I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:
Can you please help explain how I can get started with exercising – I want to but can’t get up off the lounge most days and can’t even do all my housework.
From Fleur in Pasadena
Let’s start by talking about something called “Fear of Pain”
If you’ve ever attended a Pain Management course, one of the first things they talk about is the mechanism of Pain – and the fear that comes with having pain. We’re afraid that pain is our body telling us that something is wrong and more pain means more is wrong. That’s not always the case though and the trick is determining what is “bad” pain and what is “good” pain. Exercise is generally considered to be “good” pain because it’s not causing further harm to your body. Your mind needs to be convinced that what you are feeling isn’t more harm, but simply a response to the muscles and tendons being used in a way that you’re not used to. No actual damage is being done, so while you may need to start slow, exercise is encouraged when you have Fibromyalgia. In fact, the worse thing you can do is to remain sedentary as that causes your muscles to atrophy.
There are simple moves you can do to get started on an exercise program at home that will be easy on your joints yet still give you a workout. As always, make sure you get your Doctor’s approval first.
Start with simple Stretches:
Move on to Squats, Wall Push Ups and Bicep Curls (with or without light weights)
Finish off with walking, swimming, Aquafit, or Bicycling. Even walking one block a day is a good start – add an extra block as you grown stronger, or an extra lap in the pool. The goal is to move just a little bit each day (i.e.: do 1 squat a day for a week then try 2 the next week).
Nordic Pole walking is extremely popular and works your upper and lower body while giving you stability while you walk:
The added benefit is the more you do, the more you’re capable of at home. Doing the dishes, sweeping the floor, folding laundry – they all count as movement and exercise as well. I’m not saying you need to run a marathon or do everything at once, but start slow, and realize that yes, you might feel a bit more pain in the beginning, but it’s simply your body getting used to something it hasn’t experienced for awhile. Give it time to adjust and you’ll see a difference before you know it. It takes 21 days to make a habit so give yourself 3 weeks before you “give up”. I’m willing to bet that if you’re honest with yourself and you don’t cheat, you’ll notice a positive change at the end.
As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.
Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.
And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.
So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.
What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?
In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.
What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.
Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!
So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.
That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!
Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.
Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.
All That Matters
It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought
Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings
I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye
It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round
Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.
I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. I wanted to share this question and then answer it:
What is a typical day like in your life?
From Pamela in Langford, BC Canada
It’s 2:30 in the morning and the house is quiet. I’m sitting in my recliner with Dorie, my cat on my lap, and the TV on the CatTV channel on YouTube. I went to bed at midnight but I only managed a couple of hours of sleep before I woke up, so here I am again, back on the computer in a quiet dark house. The only sound I hear is snoring – from both husband and cat, and I shake my head, not quite laughing as I listen to them both. I wish it was me, but once again, this means Wakefulness has won this battle and persists in keeping me away from Dreamland. I hurt all over, every muscle is aching and Painsomnia wins again.
So starts a typical day in my life. I live with the Chronic Pain of Fibromyalgia, osteoarthritis and several other conditions and it’s often the painsomnia from these conditions the keeps me awake at night. At this point, I’ll probably just stay awake until Ray wakes up in the morning at 4:30. There’s no sense trying to sleep now because I’m too awake. So I do what I always do; I surf the Internet, I go on Facebook and I write; either on my blog or for one of the various articles I’ll be submitting to other publications. I often find it easiest to write in the middle of the night; my thoughts flow freely and things come to the surface that are easier to write about, whether they be memories or new subject matter.
At 4:30am the alarm in our bedroom goes off and Ray wakes up. I head to the kitchen and put the dishes away from last night and make a cup of coffee for myself before heading back to my recliner while he finishes showering. I stay here until he leaves for work, so I’m out of the way. He finishes his shower and comes to kiss me good morning, then makes his breakfast while I stay out of the way. I am busy updating my Facebook page and morning Devotionals. We exchange kisses and he heads out, and then I force myself up from the comfort of my recliner. I have some cereal or yogurt for breakfast and enjoy another cup of coffee before I get serious about doing some work. Much of my day is spent on the computer generally taking care of blogging, moderating a forum I belong to, checking my email and visiting Facebook. No real change from the wee hours of the night!
At 7am, I take my first dose of medications for the day. Every hour, I make myself get up and do some stretching. My body screams back in pain, but if I don’t do this my muscles will atrophy. I also try to get one major chore done around the house, whether that be sweeping the floors, scrubbing the bathroom, vacuuming, etc.
Lately, I’ve been dealing with back pain and spasms in my SI Joint on the left side and an area around the left facet joint in my lower back. The pain has lasted for 2 weeks and I’m off to see my Pain Specialist on the day of writing this (Oct. 22nd) as well as my family doctor, plus I’m meeting a friend for lunch. It’s a much busier day than usual. Normally I would eat lunch around noon, and then check the mail at 2pm – the highlight of my day!
While most days are spent at home, I do have doctor appointments on a fairly regular basis. I also have work that I do for my volunteer positions, including conference calls that happen in person and online. As part of my health journey, I go for regular massages as well, and there will probably be some physiotherapy appointments coming up too so my calendar will start getting busier. My rule of thumb is to keep an open day after every day that has something planned so I can rest, otherwise, I become too fatigued to manage.
At 3pm, my alarm goes off to take my afternoon medication.
I often lay down for a nap at this point and can usually sleep for about an hour. When I wake up, I’ll read for a while, or watch something on Netflix, and if I have the energy, I’ll start prepping dinner. We do a lot of prepared food in our house as I don’t always have the energy to do a lot of cooking. M&M Food Stores get a lot of business from us! Tonight though it will be leftover Chinese food, so no worries about having to cook! I’ll get back on the computer until Ray is home, and then we’ll sit down for dinner and talk about our days.
The evening is quiet. Ray plays a game on his computer and I continue to work on blog posts and hang out on Facebook, etc. or read a book or magazine. Dorie, our cat curls up with me and it’s a comfortable place to be. I take my evening medications at 7pm and by 8:30pm, Ray is heading to bed. I’m tired, but I know I’m not ready to sleep, so I tuck him in with a goodnight kiss and head back to my recliner. I’ll do up the dinner dishes shortly and then spend the rest of the evening on the computer, chatting with friends, reading magazines, and unwinding. I take my final medications at 11pm and turn off the computer. Sometimes I read, and sometimes I just listen to relaxing music until midnight. That’s the end of the day for me. I crawl into bed, my body aching all over, and pray that sleep will come. I drift off, finally and start dreaming…
It’s 2:30 in the morning and the house is quiet. I’ve just woken up…and there will be no more sleep tonight.
I’m so tired, I’m repeating a post from the past!!!
Have you ever felt exhausted? So exhausted you could barely move? The kind of exhausted that leaves you feeling almost helpless? Guess what…I have a new word for you!!!
Actually, I think there are many people in my life who this word could apply to…the warriors who struggle along every day despite the illnesses that try to hold them back. My friends and fellow Warriors…you are simply Quanked!!!!!!
Taken from Grandiloquent Words:
Quanked
(KWANK’d)
Adjective:
-Overpowered by fatigue.
-To have the strength reduced or exhausted, as by labour or exertion; become fatigued; be sleepy. Origin uncertain Used in a sentence:
“After sprunting all weekend, then frooncing to get my chores done, I’m well quanked.”Quanked is a condition in which one’s energy and vitality have been consumed. One who is quanked has used up his or her bodily or mental resources, usually because of arduous or long-sustained effort. To feel quanked at the end of the day; quanked after a hard run; feeling rather quanked; quanked by a long vigil.-See forswunke
Now, in all seriousness, I think the word is an excellent one to describe how it feels to be exhausted when you live with an Invisible Illness. It’s beyond any type of tiredness you’ve ever felt before. It’s sleeping for 12 hours and waking up just as tired as you were before you fell asleep. It’s like climbing a mountain when all you did was go up one flight of stairs. When sleeping on the couch is easier than trying to get up to go to bed.
Now add in being in pain constantly and what do you get? You get you. You get me. You get people like us, who have been living in varying stages of agony for varying periods of time. I’ve talked with several friends who live with Fibromyalgia, Chronic Pain and Chronic Fatigue plus various other Invisible Illnesses and they’ve described their fatigue and pain like this:
It’s like swimming through concrete while being on fire at the same time (this was mine).
It’s like constantly having a “pins and needles” sensation that never goes away
I feel like I’m being randomly stabbed by a crazed maniac, but that crazed maniac is inside my body and I can’t stop it.
There are parts of my body that are numb and parts of my body that are burning and other parts of my body are throbbing and it all happens at the same time.
My brain is foggy and I can’t remember things like I used to. I hurt everywhere all the time and I’m always tired, no matter how much sleep I get. I don’t like this me that I am anymore.
I feel like I’ve been in a war, but you can’t see my wounds
Do you remember when you were young and you could stay up for hours and hours at night and never feel old? Yeah, well I can’t do that anymore. I’m lucky if I can stay up past 7pm and I don’t even have kids. I’m too tired and achy and sore.
There are ways you can try to improve your sleep with Fibro and Chronic Pain and the key is consistency:
Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
Power down the electronics (TV, computer, Smartphone, etc.) one hour before bedtime. The light from your bedside clock is also enough to disrupt your sleep, so check and see if there is a dim light setting, or face the clock away from you at night.
Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
Consider downloading and listening to “sleep music”. There are many recordings that are free, including delta wave music which works with your brainwaves to help lull you into a natural sleep. A “white noise” machine may do the trick for you. These can be found in almost any electronics store and come with various sounds and settings, designed to help your body relax and let go.
Limit Alcohol before bed. You know you’ve read this before but for good reason. Alcohol may make you “feel” tired but actually will wake you up more often.
Eat a healthy snack 45 minutes before bed. This would be something with protein in it like half a turkey sandwich, a small bowl of whole-grain low-sugar cereal, milk or yogurt or a banana. Eating like this before bed helps stave off the “midnight munchies” where you wake up starving in the wee hours of the night.
Get some exercise! Regular exercise like walking or swimming can help the body to rest well in the evening. Start slow and build up over time. Work with a personal trainer if possible who can help you set up a routine tailored to your specific needs and abilities.
Check with your Doctor to ensure there are no other underlying health issues that could be causing your fatigue (i.e.: thyroid issues, anemia, etc.).
Don’t just lay there – get up! If you haven’t been able to fall asleep within 20 minutes, get up and leave the bedroom. Read or do something that doesn’t involve your TV or computer/Smartphone until you feel sleepy and then try again. The bedroom should be for sleep and sex only. The longer you lay awake in bed for, the more used to being awake in bed your body becomes. You need to break that cycle so getting out of bed and moving to a different room is the smart choice.
Medications should be the last resort but are available to help if needed. Talk to your doctor or pharmacist for information about over the counter medications to try first.
If you tend to be a worrier at night, with a million things running through your head, allow yourself 10 minutes of this. Set an alarm and let your thoughts go wild. At the end of those 10 minutes, it’s time to stop. It takes practice but it gives you the opportunity to get all those worries out without mulling them over for hours. This isn’t the time for solutions, just the time to acknowledge that they’re there. In the end, say something like “I’m glad I had this time to worry about everything, but now I’m going to sleep on them. I’ll deal with them in the morning”. It tells your brain you’ve acknowledged the worries, and you’ll do something about them later. And off to sleep you go.
Another way to sleep better at night is to be organized during the day. The less you leave to chance during the daytime, the less you need to stress at night. “Did I sign Johnny’s papers for camp?” “Where did I put the chequebook?” “When is the next Book Club meeting?” Whether you use your smartphone, an organizer or the calendar at home, by having a regular system for keeping track of appointments, meetings and paperwork, you’ll stress less knowing you have it all in one place and you’ll sleep better at night.
Sleeping better isn’t always about being in less pain. It’s about doing all the things you can to make your environment as sleep-conducive as possible which may result in less pain. Removing as much stress as possible from your sleeping area is one of the biggest and best things you can do, so try and think of all the things that will make your bedroom area the most comfortable it can be. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.
I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:
Do you have spiritual beliefs that help you cope with living in this hell?
Before I answer, let me ask you a question. If you live with Fibromyalgia, Chronic Pain or an Invisible Illness, has someone ever said to you “I’ll pray for you” or “You’re in my prayers”? What does that mean to you? Do you have Spiritual Beliefs that make those prayers easy to accept? Do you believe in a Higher Power? In God? Or do you believe that when we die, that’s it…there is nothing afterwards. No afterlife, no Heaven or Hell, no God of any type?
I am a Christ Follower. I call myself that because too many things have been done by “Christians” in the name of Christ that taint the Holy name, and I refuse to be associated with them. I’d rather try to live my life the way Christ modelled it, and so being a Christ Follower is a much better way of describing my religious leanings. I believe that He is the only way to Eternal Life and I believe in Heaven and Hell. I don’t talk about this often and almost never in public, but when I say I’ll be praying for you, trust me…I WILL be praying for you.
I also believe that everyone has a right to their own beliefs, and I will never push my beliefs on anyone else. If you want to talk about God with me, I’m happy to do so, but I won’t raise the subject first. It’s not that I’m shy or embarrassed about God, but more that I’m respectful of others, and I prefer to wait to discuss religion until the subject is brought up by others first.
So, in regards to the question that was asked, yes, I have a God who loves me dearly and who has a plan for my life. Right now, that plan includes Chronic Pain and Chronic Fatigue from the many conditions I live with. Have I ever asked God for healing? Yes, I did once. I prayed:
“God, if it be Your will, please remove all sickness from my body and return me to good health. If you leave my body the way it is Lord, then please give me the right attitude to learn to live with the pain and fatigue that I experience. Please help me learn to not complain because I know that there are so many other people out there that are worse off than me. Give me an attitude of grace, help me to be humble, let me have patience and let me always be of help to others so I’m not always focused on me. I know I can be selfish and self-centred so please help me to change that part of me, God. Make me a better person than I am today. Help me in my relationship with my husband because I know this is going to make things tough for us. Thank you God for everything you’ve done for me, let me always be grateful to you. Amen”
God’s plan for me was obviously not to heal me, and in fact, my health has become worse in the 5 years since I said that prayer. Am I bitter? Not at all. None of us has ever been promised anything. Why shouldn’t I have health problems? Why not me? What have I done to make me so special so as to avoid bad things?? Nothing. I’m just as susceptible as anyone else, and I know that. And I think that’s where acceptance comes in. I’ve accepted that this is what my life is. I probably will not be healed on this side of Heaven, and that’s okay. I DO know that I’ll be renewed IN Heaven according to my beliefs and that’s a comfort to me. I can put up with what happens in my life because I know the promise I have for Eternal Life in my future.
And that is how I cope. I cope because, for me, I can see beyond what happens to me on Earth. My spiritual side believes in Life after Death, and in an Eternal Heaven, where my body will be renewed. There will be no pain and no sorrow and I will be free of everything that troubles me in my Earthly life. There won’t be any more Chronic Pain or Chronic Fatigue, my body will finally be free of all restrictions and for that, I can withstand whatever it is that I have to go through while I live my life here.
What about people who don’t have a Spiritual belief system? What about the people who don’t believe in an Afterlife, a Heaven or Garden of Eden? What happens to them? Well, according to MY beliefs, anyone who doesn’t accept Christ as their Savior goes to Hell. According to THEM, they likely believe that nothing happens when they die; that there is nothing after death. We could delve into a huge discussion of Theology now, but my point is, without some type of Spiritual belief, what in the world are you living for??
My Spiritual beliefs are what keep me going. That promise of Eternal life is what I cling to when I have days of intractable pain. When I think I can’t possibly handle another new condition or illness and God decides otherwise, I have no choice but to hold on to the hope of Heaven
One of my favourite Bible verses comes from Jeremiah 29:11 (King James Version)
For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.
That is exactly what my Spiritual beliefs do…they give me hope and a future, knowing that something better is coming. It’s also the reason why my blog is named There Is Always Hope. I believe it to be true, both here on Earth and onward in Heaven.
I hope you, the reader, have a Belief system too. It may not be the same as mine, but I hope you have something to believe in. Something that helps you get through whatever life throws at you. Something to cling to in the dark hours.
What do YOU believe in? What ARE your hopes when all seems hopeless? How DO you manage in times of trouble and crisis?
Research has shown that pain is influenced by emotional and social factors. This needs to be addressed along with the physical causes of pain. Chronic stress is one factor that contributes to chronic pain. The good news is that you can get natural pain relief by making relaxation exercises a part of your pain-management plan.
To understand how natural pain relief works, it’s important to understand how stress affects your body. Our body has a natural “fight or flight” response when it comes to stress and pain and stress have a similar effect on the body: your heart rate and blood pressure rise, breathing becomes fast and shallow, and your muscles tighten.
With chronic stress, the nervous system keeps the body on constant alert. This takes a big toll on your system. Levels of stress hormones increase, and muscles remain in a nearly constant state of tension.
Chronic stress hurts.
Relaxation calms the mind and helps the body unwind. It is particularly important for people who live with pain. Pain increases muscle tension which in turn, creates more pain. When muscles are tense, they tighten and increase pressure on our nerves and other tissues which can make the pain worse. Relaxation can help break the pain-tension cycle. There are many forms of relaxation techniques so it should be easy to find one that works best for you.
The easiest one to begin with is deep breathing. Shallow, rapid chest breathing results from tension. Deep breathing from the diaphragm helps relax you. To begin, find a warm quiet place, where you won’t be disturbed. Once this technique is learnt, you can use it in almost any situation you find yourself.
Deep breathing
Make yourself comfortable
Loosen any tight clothing
Begin by listening to your breathing as it is
Breathe through your nose whenever possible (use your mouth only if your nose is blocked)
Put your hands over your stomach area and feel them rise and fall.
Imagine you are breathing into your hands. Relax your stomach muscles. Take deep, slow breaths. Remember to breathe at your own pace
As you breathe in, imagine you are breathing in peace. As you breathe out, imagine you are blowing away tension.
Foursquare Breathing
Inhale to a count of four, hold for a count of four, exhale to a count of four, then hold again to a count of four
Breathe deeply, so that your stomach rises and falls with each breath
Repeat for ten cycles
Progressive Muscle Relaxation
Tense and relax each muscle in turn unless it hurts, in which case, leave that one out.
Sit or lie down quietly in a comfortable position
Close your eyes and take slow, deep breaths. Breathe easily and naturally
Slowly tense each muscle in your body. Begin with your right hand. Squeeze your right hand into a tight fist. Feel the tension in your right hand. Hold this position for a few seconds. Now release the tension slowly. As the tension disappears, your hand feels relaxed.
Repeat this for your left hand.
Arms – tense both arms. Make your arms rigid and tense. Hold and release
Shoulders – lift your shoulders. Hold and release. Hunch your shoulders to touch your ears. Hold and release.
Toes – curl your toes up. Hold and release.
Feet – pull your toes up towards your face. Feel the muscles working in your shins. Hold and release. Then point your toes away from your face. Feel the muscles tensing in your calves. Hold and release.
Legs – clench your thighs. Hold and release. Clench both buttocks. Hold and release.
Eyebrows – raise your eyebrows as high as they can go. Hold and release.
Frown – pull your eyebrows together. Scrunch up your whole face. Hold and release.
Eyes – screw up your eyes tightly. Hold and release
Jaw – Open your mouth wide. Hold and release
Now your muscles are relaxed. You feel calm and still
Relaxation exercises calm your mind, reduce stress hormones in your blood, relax your muscles, and elevate your sense of well-being. Using them regularly can lead to long-term changes in your body to counteract the harmful effects of stress.
Today on our very last Interview October, we’re meeting Frank Rivera. Here is his story:
Frank’s Bio…
Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, was a Global Genes RARE Foundation Alliance Member and was an Advocate, an ambassador for The EveryLife Foundation and a Working Group Member. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raise awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank was named Brookhaven advocate of the year. Frank also is an advocate for “Right to Try” even being interviewed by NBC Nightly News this year.
Chronic illness(es)/disabilities I have…
Sarcoidosis, Sjogren’s Syndrome, and Parkinson’s and IBS
My symptoms/condition began…
I was misdiagnosed in 2004, with Lung Cancer. I went through 4 years of chemotherapy and radiation while living in Florida. After the 4 years, I was told I was in remission. In 2011 after moving back to New York, I had problems with my IBS. While in the ER room they took a CT scan of my stomach and part of my lungs were shown in the CT Scan. They found more masses in my lungs. They took a biopsy and said I had Sarcoidosis. I ended going to Mt. Sinai Hospital to their Sarcoidosis clinic in Manhattan. They got my past tests from the hospital in Florida and found out that I had Sarcoidosis the whole time.
The hardest part of living with my illness/disabilities is…
The pain and that they all are invisible illnesses. People look at me and they say well you look fine. But they don’t know what my insides feel and look like. Sarcoidosis has taken over 90% of my body. The only place I don’t have it is in my liver and kidneys.
A typical day for me involves…
Everyday I never know how I am going to feel. So there is no real routine. I am on permanent disability. The only thing I do every day I wake up unless I can’t get out of bed is make sure both my wife and daughter have what they need for work and school respectively. I make them their lunch as well as breakfast. After that, I am too tired so I take a nap. Then since I run a non-profit organization I check my emails to see if anyone needs help. If not most of the days I rest. This disease has taken the energy out of me. In April I was downgraded from chronically ill to terminally ill. I used to travel to raise awareness for Sarcoidosis and Rare Diseases. I no longer travel far due to my body not being able to handle the travel and the long days in meetings
The one thing I cannot live without is…
It may sound funny, but the one thing I need every day is my one cup of coffee every morning.
Being ill/disabled has taught me…
To value life. It has told me to not sweat the small stuff. I have learned that living each day as the best you can. I also have learned you can’t please everyone so you need to please yourself first or you won’t be able to please others.
What advice would I give someone recently diagnosed…
Be your own best advocate! Be involved. Learn about the disease
My support system is…
I would not be anywhere without my wife Diana and my daughter Savannah who is 15 going on 30. They have been there for me physically, emotionally and most important mentally. 3 years ago I thought about committing suicide due to the pain. I would have done it if it wasn’t for my wife and daughter. I ended up putting myself in a 72-hour hospital watch for suicide prevention.
If I had one day symptom/disability-free I would…
I would go away with my family to the beach. That is my favourite place but now since I have Sarcoidosis I haven’t been able to go that much at all.
One positive of having a chronic illness/disability is…
There are actually two positive things that have come from having these diseases. The first is the friends I have met that have the same diseases as I do. They understand what I am going through and I can talk to them about it. The most important positive for me is I knew I was strong, but I never knew how strong I was until I have been with this disease. I have fought through things I never would have thought I could. My motto is ” I have Sarcoidosis and Parkinson’s but THEY don’t have me!”
Today on Interview October, we’re meeting Maya Northen Augelli . Let’s get to know her better:
Introduce yourself and tell us a bit about you…
My name is Maya and I’m from Philadelphia, where I live with my husband and our dog. I run a travel planning company, and also work with a local consulting company. I became a mental health and chronic illness advocate in 2009, after being diagnosed with a relatively rare mood cycling disorder. When I’m not working or advocating, you can often find me traveling, hiking or otherwise enjoying nature, reading, writing, or doing yoga – in fact, I’m just starting Yoga Teacher Training this fall!
Chronic illness(es)/disabilities I have…
I have Rapid Cycling Cyclothymia, a rare mood cycling disorder that’s similar to, but technically “less mild” (in quotes because it definitely doesn’t feel mild at times) to Bipolar Disorder. I also struggle with anxiety as part of this disorder, though not technically diagnosed with a separate anxiety disorder. In addition to my mental health condition, I battle IBS and Migraines
My symptoms/condition began…
I am told I was most likely born with cyclothymia. I started exhibiting symptoms of hypomania as early as two years old, though of course they didn’t know what it was at the time. Symptoms progressively increased in frequency and intensity through my teen and early adult years. I was finally diagnosed just shy of my 30th birthday. The migraines I have been getting since I was a teenager – tough to really say when they started, but I can definitively say I can’t really recall a time when I wasn’t prone to migraines. They’re not continual, but I have consistently gotten them at least a few times a month since I was a teen. The IBS symptoms began around the age of 23, and I was diagnosed shortly thereafter.
My diagnosis process was…
I’ll speak mainly about my cyclothymia diagnosis process here, as they others were pretty straight forward – went to the Dr, was referred to a specialist, had a couple of tests (colonoscopy/upper & lower GI tests for the IBS) and was diagnosed.
The cyclothymia diagnosis was trickier. I’d been seeing therapists on and off since college. I had only found one I’d really trusted, but long story short, at the time my symptoms weren’t as prominent, and I was more seeing her post-divorce than for my specific mental health symptoms. In the summer of 2009, my GP put me on a low dose of antidepressants, which at first helped, but soon made me feel worse. In August 2009, I was hospitalized for two days with what I thought were non-stop anxiety attacks. The hospital increased my depression medication, and I felt worse. When I got out of the hospital, I went to the one therapist I’d trusted from past years, and we began working through things – including the fact that the medication was making me worse. I even brought my mom to a session, in which she described the symptoms I’d exhibited as a very young child (since I couldn’t quite as accurately describe them, having been a toddler when they started). It was during these visits that I was finally diagnosed with rapid cycling cyclothymia. My therapist explained that the antidepressants made me worse because I cycle so rapidly that basically, by the time the medication that’s supposed to “lift” my mood (for lack of a better phrase) hits my system, I’ve already cycled up, and the effect is compounded. So in essence, the antidepressants were putting me in almost continual hypomania (what I had thought were anxiety attacks). She subsequently brought me down off the antidepressants and we began mood stabilizers.
The hardest part of living with my illness/disabilities is…
It’s two fold for me. One is the feeling of lack of control over my brain. I feel like I often can’t trust my own mind – because I cycle so quickly, literally every day is a complete surprise. I never know how I’ll wake up feeling (depressed, hypomanic, anxious, none of the above), and how often it’ll change each day. Not being able to trust my own brain, or feeling like I can’t, massively affects my self-esteem and often makes me feel hopeless and worthless.
The second is the stigma. The fact that people think you can just smile, change your attitude, be more grateful, look on the bright side, or choose to not feel this way is awful. When this happens, not only do I feel hopeless and worthless, I’m being told it’s my own fault, and shamed for how I’m feeling.
A typical day for me involves…
I have a full time job, so on weekdays, my day of course involves that. But in terms of illness and coping strategies, I get up early to exercise most weekdays before work – it helps my mood, and it helps me to keep a consistent schedule. I spend time writing each morning – mostly journaling. This helps me brain dump, more or less, so that I can try to sort through the mish-mosh of feelings, emotions, thoughts all going through my brain. Without this outlet, it feels like non-stop stimulation inside of my brain, before even getting much input from the “outside” world, and it makes concentration and focus extremely difficult. Most evenings after dinner, I try to meditate, and/or do some yoga. It’s a wind down for my day, and helps settle my brain, so that I can hopefully get some sleep. If it’s not a work day, I try to spend as much time in the sunshine and fresh air as I can – especially in nature. I’ve been slacking in that lately, and really need to get back into it.
The one thing I cannot live without is…
My loved ones. They’re my rocks. But if I had to choose an actual thing… I’d be tempted to say my medication, but I’ve had to go temporarily off of it for personal reasons, so technically, I’m living without it for the moment. So, I’d probably have to say my journal. Writing is my solace. My journal will “listen” to my thoughts and emotions and feelings with no judgement, and it lets me get it “out of my head” without having to actually direct it at anyone, which is huge in helping my relationships with loved ones and friends (note: I’m far from perfect in this regard, but it helps). I work through so much in the pages of my journal, and I can’t imagine not having that outlet on a daily basis.
Being ill/disabled has taught me…
That I am not alone, and that so many people struggle with their mental health. You hear the statistics, that one in five Americans have a mental health condition, but when you begin talking about your illness and advocating, and you have people you would never have thought coming to you and saying, “Thank you so much for speaking out, I struggle too,” it really hits home. That “one in five” goes from being a statistic to something tangible that you can feel in daily life. My illness has also given me a purpose. In my adult life, I feel I’ve floundered a bit in really finding where I feel I belong. But utilizing my illness to help others has, from the very start, always felt 100 percent like it’s my purpose and a path that I have to follow. It feels such a natural part of my life, almost an extension of myself, when so little else does sometimes.
What advice would I give someone recently diagnosed…
I have so much to say here, but I’ll try to condense it! First, I would tell them to learn everything they can about their illness (from credible sources of course), and that when they’re ready, finding support with others who have the same/similar illness – whether they find this in an official group or among friends or on social media/online – can make a world of difference. I’d also remind them how often depression and anxiety lie, and that there may be days that their illness wants them to believe every terrible thing about themselves, but that these aren’t true, no matter how convincing the lies sound. I’d want them to know that there’s hope, there are others who “get it” and are here to help, and that they are not alone. Finally, I’d tell them to make sure that they have a healthcare team that they trust, and just as importantly, that trusts them. We know our bodies and our brains better than anyone else because we have lived with them our entire lives, and it’s important that our health professionals understand this – we deserve that respect as patients, to have our voices heard and not to be discounted.
My support system is…
My husband, my family, my friends, my therapist, my social media/online spoonie family.
If I had one day symptom/disability-free I would…
Live as fully as I could – do activities I love to do, with people I care about, and try my hardest not to, as so often happens, let the anxiety of “Ok, I feel good now, but when is the proverbial other shoe going to drop” creep in. Afterall, if I let it creep in, I’d cease to be symptom free!
One positive of having a chronic illness/disability is…
For myself, I’d say that it’s helped me to be more understanding and empathetic. Because I know I’m often struggling with a lot that others can’t see, I try to also remember this when the situation is reversed, and I try to put myself in their shoes before passing judgement. For instance, if someone’s speaking to me badly, I try to ask myself “what might they be going through that I can’t see that’s causing them to act this way?”.
In addition, as mentioned above, it’s given me a purpose and direction. Without my illnesses, I wouldn’t be an advocate, I wouldn’t be involved in so many various organizations and causes, and I wouldn’t have met so many amazing people through these.
Interview October is almost over, but we have another guest to meet – Jan Collins
Introduce yourself and tell us a bit about you…
I am Janet but prefer Jan and I am 60 years young. Recently divorced after 37 years of marriage I have 2 children, Zoe 35 and Nathan 26. Zoe has my only granddaughter Amerthyst who will be 7 in November and she is the light of my life
Chronic illness(es)/disabilities I have…
I have among other things chronic brittle asthma, COPD, type 2 diabetes, osteoarthritis and the onset of osteoporosis in my left hip. For 15 years I was on steroids for my asthma which has caused me all sorts of digestive problems. I am pleased to say that I have recently come off the steroids and have already lost over a stone (14lbs) in weight
My symptoms/condition began…
I have had asthma all my life, when I was 4 my parents were told it was infantile asthma and I would grow out of it. In the interim, I have had bad spells and good spells. About 16 or 17 years ago I collapsed at home and if it hadn’t been for my then 9 year old son who didn’t panic but kept his calm I could have died. For the next 6 months or more I was in and out of A and E, my mum and husband were on the phone every day trying to get me to see a specialist. We were told that as mine was asthma, not lung cancer I didn’t have priority. When I did see the specialist he put me on steroids and boy did that open a can of worms. Every time they found something else wrong it was due to the steroids. I put on loads of weight and lost all my self-esteem.
The hardest part of living with my illness/disabilities is…
The worst point was being diagnosed with diabetes 3 years ago which restricted my already limited diet even more. My ex also has diabetes and could eat almost anything without it causing any problems. I quickly learnt I couldn’t and was put on insulin developed fat growths on my arm and in my eye and had problems with my feet. It was so frustrating, I lost my self-confidence and my controlling ex basically persuaded me I couldn’t do anything so I became housebound except when he took me out. Then he walked out, my son helped me do a food diary to work out what I could or couldn’t eat, yes it was limiting but at least I knew where I stood. I discovered an inner strength and regained some of my self-confidence. A haircut and losing weight with people telling me how good I looked did a lot for my self-esteem as well.
A typical day for me involves…
At the moment a typical day for me starts when my alarm goes off at 5am. This gives me three-quarter’s of an hour to get up and get dressed before I wake my son. After the first of many cups of tea the dog and I go for an OK let’s get our bodies moving walk, we both suffer from arthritis. This is the first of at least 3 walks we do. Then it’s medicine time which can take up to an hour. 2 mornings a week the community transport bus picks me up from home and takes me into town (I can no longer drive due to my eye problems). My daughter comes over once a week and we go out for a coffee. Afternoons are given over to crafting and studying, I am doing an O. U. English literature and creative writing degree. After a late tea and my second lot of insulin and, my 3rd lots of nebules I do my son’s lunch box for the next day before sitting down for the evening. I usually catch up on social media and deal with anything that has cropped up, write to my numerous pen pals or read. Every day my intention is to be in bed by 10 but it rarely happens. For one thing, my evening routine of medicines, putting cream on my feet etc takes over an hour.
Being ill/disabled has taught me…
Over the years I have adapted my lifestyle to suit my needs but despite what it sounds like my health doesn’t dominate my life I always say I am not disabled just less enabled in some fields but have learnt so many new things to more than compensate for those things. People feel sorry for me but I can’t understand why I have so much going for me and have learnt so much. These days I can’t imagine living without my health issues but that aside my Jack Russell Terrier Herbie is my lifeline, he is company, he gives me a reason to get up and walk him and thus exercise. As a result of watching my diet changes and walking Herbie, I have lost over a stone (14lbs) in weight. I am still overweight but every bit helps.
What advice would I give someone recently diagnosed…
Pace yourself, set targets for yourself but don’t knock yourself up if you don’t achieve them.
One positive of having a chronic illness/disability is…
Being disabled has taught me so much it is difficult to remember them all. Tolerance, patience, understanding, empathy, compassion, I have become a better listener and learnt many new skills all as a direct result of my health problems
To quote 2 sayings my grandad used to say
” count your blessings one by one every day.” These might be anything from the love of your family and friends, sunny days or just the fact that you are still breathing.
” Smile and the world smiles with you, cry and you cry alone”. People get fed up with you if you are always moaning.
Other than that I am a member of Disability Matters and I am an ambassador for the online group Carenity.com specialising in Respiratory Diseases, Chronic Pain, Depression and Diabetes.
Interview October continues with another wonderful guest…let’s meet Beth Crutcher
Introduce yourself and tell us a bit about you…
My name is Beth…I am a 52 yo, Married, mother of 2, Full time Registered Dental Assistant. I’ve been in the same dental office since 1995.
Chronic illness(es)/disabilities I have…
I have Chronic Congestive Heart Failure, My Ejection Fraction, or how the blood pumps through the heart currently sits at 35- 40%, normal is 55-70%. I also have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Mixed Connective Tissue Disorder.
My symptoms/condition began…
My symptoms first began with the birth of my first child in 1988, I was 21 years old and had an uneventful pregnancy, but soon after the birth of my daughter I noticed I could not take in a deep breath, and felt a heaviness on my chest. Since I had just had an emergency c-section, doctors overlooked any concerns as normal pregnancy symptoms. When I persisted they finally saw me and realized I was in distress as my oxygen levels were in the 70’s. I was sent to the ER and treated for pulmonary embolism, pneumonia, asthma, and even anxiety. I was away from my newborn for two weeks and discharged without a proper diagnosis. That of which I would not get until the birth of my second daughter 13 years later in 2001 and in post-pregnancy had shortness of breath, and swelling, and could not lie flat. after two weeks of medical professionals saying it was normal..an ER Cardiologist gave me a diagnosis of PeriPartum Cardiomyopathy. Pregnancy-induced heart failure,
My Ejection Fraction was at 10% and I may get better with medications, or I may need a heart transplant. I have been on an up and down EF rollercoaster of treatments and medications and am currently stable with an EF of 35-40%. Still very symptomatic and having other symptoms of extreme fatigue, lightheadedness, brain fog, excessive heart palpitations, exercise intolerance, nausea, severe headaches, aura migraines, joint pain , stomach pain, sun/heat exposure intolerance, dizziness, high and low blood pressure readings led to having a positive tilt table test and a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), an autonomic dysfunction, Dysautonomia. and blood work revealed a high ANA reading which gave me a diagnosis of Mixed Connective Tissue Disease, an autoimmune disorder. All aspects of each illness has its challenges and it is often hard to balance one against the other.
The hardest part of living with my illness/disabilities is…
An unpleasant aspect of HF and POTS and MCTD, for me, is doing a task that involves squatting down (rather than bending from the waist, which makes me feel faint on standing upright). Getting something from the bottom of the shelf, or reaching and stretching in a continuous motion, walking up a flight of stairs, as well as taking the elevator leaves me very short of breath, or dizzy. I ask why this happens and they said it’s a bit like standing on a garden hose – squatting down like that with an inefficient heart restricts the return of blood to the right side of the heart through the vena cava, consequently there is less to go to the lungs for oxygen before being pumped around the body by the dysfunctional left side of the heart. I also don’t like the pain in my joints, it can make the smallest of tasks unbearable.
A typical day for me involves…
First getting out of bed in the morning is slow moving. I have learned to move carefully. I only have so much energy to use in a day. Monday-Friday I work full time in a busy dental office. I have learned my limits and go through life accordingly. When I’m in a flare-up, I rest. I do activities/ family functions when I feel up to it, when I feel I can’t… I don’t.
The one thing I cannot live without is…
My Husband and children and soon to be granddaughter!
Being ill/disabled has taught me…
You know who your real friends are. The ones that understand you may not be capable of doing what you once did, but support you when you can or can’t.
What advice would I give someone recently diagnosed…
Trust yourself. Keep telling yourself, You’re not unreliable, Your health is. It’s not your fault
My support system is…
My family and friends and work family. And social media groups.
If I had one day symptom/disability-free I would…
I would with all my loved ones around me, run down the beach, climb a mountain to look at the view down below. And just take in the sunshine and eat whatever I want!!!
One positive of having a chronic illness/disability is…
The connections I have made through social media and becoming an advocate for PPCM with SavetheMommies.com. My Heartsisters are like my family.
My name is Maria Thomas, and I’m a writer, editor, content creator and book nerd. Seven years ago I launched my blog, My Life as a Puddle, where I’m creating hyperhidrosis hope and awareness one drop at a time.
Chronic illness(es)/disabilities I have…
Hyperhidrosis (excessive uncontrollable sweating), ulcerative colitis and Hashimoto’s thyroiditis
My symptoms/condition began…
Hyperhidrosis- age 7
UC – age 33
Hashimoto’s – age 36, and I found out by accident after some bloodwork!
My diagnosis process was…
A long time coming for my Hh. I found the term in a Google search but didn’t get a proper diagnosis until age 21.
UC – the perfect storm. I was going through a divorce, selling the first home I ever owned, and moving into a tiny little apartment. It was a trifecta of stressful events and my body decided to respond with blood in my stool and a frequent need to go.
The hardest part of living with my illness/disabilities is…
Hh – Getting people to understand that I am not sweating because I am nervous. I’m nervous BECAUSE I’m sweating. There’s a difference. It’s also hard for people to understand how much my life and choices are affected by my sweating. It’s not “just a little sweat.” I try not to let it rule my life but sometimes it does.
UC – having a chronic autoimmune condition makes me tired sometimes, and more prone to GI pain and distress. I’m not high maintenance, but I’ve really had to overhaul the way I eat, which can make it difficult to eat out sometimes. I now follow a Paleo nutrition plan, which is hard when you live in a state known for its craft beer, which is unfortunately loaded with gluten.
I also have to stab myself every other week with a biologic injectable medication. Try that with sweaty hands!
A typical day for me involves…
Turning my desk fan on and off at least 25 times a day while at work, then coming home and changing my sweaty clothes and socks if necessary. If I’ve worn sandals, I’ll usually wash my feet since they’ve developed a coating from sweating.
UC-wise I never know when I’ll experience symptoms. I’m in remission now, but occasionally I’ll have gurgling sounds and stabbing pains in my lower abdomen.
Hashimoto’s-wise, sometimes I feel so lethargic it’s like i haven’t slept in days. Other days I feel like I could run a marathon.
The one thing I cannot live without is…
My books, my husband, and my Pug named Maya
Being ill/disabled has taught me…
To listen to my body and take care of it. I was hospitalized once because of my ulcerative colitis. It was scary and miserable and terribly isolating. It also taught me to be my own best health advocate. I had nurses trying to feed me grains and gluten and dairy. Not once did my GI doctor at the time say gee, you might want to avoid all that stuff. I had to seek out a functional medicine doctor to learn all of that and switch to a Paleo diet.
What advice would I give someone recently diagnosed…
Do your research! Read the medical literature, read books, and absolutely go see a functional medicine Doctor who treats the whole body as a system and doesn’t just prescribe medications to cover up symptoms.
My support system is…
My husband and my family
If I had one day symptom/disability-free I would…
Go on a public speaking tour and wear high heels without no-show socks or absorbent insoles because I wouldn’t be worried about sweating all over everything ! Then I’d do a meet and greet and shake everyone’s hand.
One positive of having a chronic illness/disability is…
I get to choose how I respond to my life, which is why I choose to make my sweaty mess my message. You can either rise up or stay below. All it takes is one different choice.
Let’s meet Roger Potter, our next guest on Interview October. Here he is:
Introduce yourself and tell us a bit about you…
My name is Roger Potter, a young strong Senior who is one of the original blue babies of the 1940’s, born also with congenital heart disease and one of the pioneering babies that had open heart surgery in 1952. I am also one of 20 co-authors of a up coming book called Cardiac Athletes vol 2.
Chronic illness(es)/disabilities I have…
I was born a Blue Baby – this means that you’re born with a pale bluish color to your skin which means that you are still mixing oxygen and blood when you’re not supposed to be which indicates you also have congenital heart disease.
My symptoms/condition began…
My symptoms began at birth and the diagnosis was at 6 months of age.
The hardest part of living with my illness/disabilities is…
The hardest part as a child was not being able to keep up with the other kids and getting tired very fast. Now as an adult, it’s accepting the fact that there are things I can’t do or doing them differently.
A typical day for me involves…
Being active, living as full a life as I can and getting in the gym on a regular basis, for this condition is not going to stop me – I will capitalize on it.
One thing I can’t live without is…
The one thing I can’t live without is activity and going to the gym for this malady will not defeat me.
Being ill/disabled has taught me…
Feeling or being disabled has taught me how to live boldly and be able to conquer that which I can and let others do that which I can’t.
What advice would I give someone recently diagnosed…
I would tell those that are recently diagnosed to find out all that you can about what you have and talk with your Doctor at great lengths about exactly what you have then find out what your restrictions are like I did – and then find out if there is a way that you can accomplish at least some of your goals safely.
My support system is…
My support system is in part myself, for I seek to challenge myself on a safe basis and with Facebook Cardiac Athletes when I can motivate those that are going through problems that I had many years ago.
If I had one day symptom/disability-free I would…
If I had one day free of all and knew that it wouldn’t bother me, I would max the day out. One positive of having a disability is knowing you’re a survivor and in an exclusive club and being able to do things that you weren’t supposed to be able to do.
Our Interview October series continues with our next guest, Jenni Lock. Let’s meet her now:
Introduce yourself and tell us a bit about you…
My name is Jenni Lock. I’m 43 years old and hail from Ohio. I created Jenni’s Guts blog in 2008 and write about my journey with intestinal nonsense and other health issues. My sense of humor and sarcasm are all part of my charm. I have a deep love for animals, learning about everything, socializing from a far, and my beautiful daughter.
Chronic illness(es)/disabilities I have…
Crohn’s disease, Irritable Bowel Syndrome, Bile Acid Malabsorption, chronic nausea and diarrhea mainly. However, I also suffer from Fibromyalgia, Anxiety, Depression, Insomnia and struggle with a touch of PTSD.
My symptoms/condition began…
I started having health problems in roughly 1990, though I wasn’t officially diagnosed with Crohn’s until 1995. Everything else wrong with me just snowballed over the years after that.
My diagnosis process was…
Difficult. I suffered from a lot of stomach pain, back pain, joint pain and lost about 15 pounds due to running to the restroom about 15-20 times a day. My family doctor told me I was depressed and needed Prozac. That didn’t help so I went to a specialist. The specialist told me I had Irritable Bowel Syndrome and needed to eat more fiber and scheduled me for a sigmoidoscopy, but everything came back normal so I was, again, told to eat more fiber and decrease my stress. I quickly found out fiber made things worse and I continued to get sicker and sicker. I went to a different specialist who did many more tests but everything came back normal except for one blood test. It showed an inflammation/infection rate of seven times the normal rate. I exhausted all the testing options so I was scheduled for surgery to figure out what was happening inside me. During surgery they found I had about 3 1/2 feet of severely inflamed small intestine and the final diagnosis was Crohn’s disease. The whole diagnosis process took about 2 years.
The hardest part of living with my illness/disabilities is…
My inability to do things with my family and friends because of being tied to a restroom and not feeling well enough. Especially not being able to travel and go to fun events. I’m not able to do a lot of things with my daughter because of this and it is really hard for me to continually have to say, “No, I’m sorry but I’m too sick” or “I can’t because of the bathroom situation.”
A typical day for me involves…
After an exhausting night of not sleeping well, or even at all, the mornings are usually met with many trips to the restroom which continues throughout the day but most of the time tapers off at least a little throughout the day. I watch a lot of movies and television, read and research, or put on music and draw. I’m unable to work so I mainly just try to keep myself from going stir crazy.
The one thing I cannot live without is…
Laughter.
Being ill/disabled has taught me…
I can be a person with a disability (or many actually) but it doesn’t define who I am. I’m so much more than just someone with medical problems. And it has taken struggling with so many things wrong with me to actually figure that out.
What advice would I give someone recently diagnosed…
This diagnosis isn’t the end of you. Study and learn as much as you can about your illness from every source you can get your hands on (except WebMD!!). You have an inner strength that you never knew you had so use it to fight for proper health care and proper treatments and don’t ever, EVER settle for less – not from your doctors, healthcare professionals, or anyone else. You’re worth it!
My support system is…
My family and friends. And a furry little friend or two always make things better! (Shoutout to all the pets I have had along the way – I miss you guys!)
If I had one day symptom/disability-free I would…
Grab my daughter, get in the car and just drive. We would go to all the places she always wanted to go and do all the things she wanted to do that I couldn’t because traveling, for me, is so difficult.
One positive of having a chronic illness/disability is…
All the communities out there that have allowed me the opportunity to meet people and learn about their stories. I’m so fortunate that my blog has reached so many people and we all get to help each other cope. I think it is so important to have a community of people who understand, even if they are hundreds of miles away from you and you never physically meet each other.
We continue our Interview October series with a guest I think you’ll enjoy. Let’s meet Derek Canas…
Introduce yourself and tell us a bit about you…
My name is Derek most people call me D-REK I’ll explain that later. I’m 33 years old, and survivor of a congenital heart defect and open heart surgery. At sixteen years of age, I was diagnosed with Aids.
Chronic illness(es)/disabilities I have…
Congenital Heart Defect called Transposition of the Great Arteries/ HIV/Aids
My symptoms/condition began…
Symptoms of heart condition diagnosed at 3 months of age. Open heart surgery to correct it happened right after in 1985. I required 15 blood transfusions during surgery and recovery. During surgery, the SA node was damaged requiring a pacemaker to correct. After a 3 month recovery, I made it home but life began to show another hidden monster. I wasn’t growing at a normal rate.
My diagnosis process was…
Heart was at 3 months HIV/Aids wasn’t discovered until the age of 16.
The hardest part of living with my illness/disabilities is…
The Stigma surrounding HIV/Aids It makes relationships and friendships very difficult.
A typical day for me involves…
Spending the day taking care of my two dogs and doing online advocacy from my website
The one thing I cannot live without is…
Music I’m a DJ that’s were the D-REK name came from. So music has helped me through difficult times and made some great memories working in nightclubs
Being ill/disabled has taught me…
I’m so much stronger than I ever could have imagined. I’ve been underestimated most of my life but I’ve always fought through whatever has tried to stop me.
What advice would I give someone recently diagnosed…
Keep your head up things do get better. Don’t let the words in your medical records consume you. You can still chase your dreams and live a very full life.
My support system is…
Family they are great always keeping me laughing and having fun. I’ve been in some very scary situations over the years and we always found a way to find the funny moments.
If I had one day symptom/disability-free I would…
Probably run wild. Life has tried to slow me down for a reason. I like work and if I could I’d go nonstop
One positive of having a chronic illness/disability is…
You learn the value of your health and how quickly it can fade away. You set boundaries and spend more time with those you truly care about. Little moments become something very valuable
Who Was I Kidding?
I’m mad. I’m mad at my body, I’m mad at the way I’ve been let down, and I’m mad that I’ve lost my freedom, once again. What am I talking about?
Singing
For those who don’t know, I used to sing in a women’s barbershop chorus as well as in a quartet. I love to sing but I haven’t done it since 2007. Recently, I heard about an opportunity to join a group called the South Island Care Choir, made up of Doctors, Nurses, other Health Care practitioners and Patient Partners from Patient Voices Network, the group I volunteer with. I immediately jumped in and said YES!! I would love to join this group, not even thinking how unrealistic this might be for me healthwise.
Well, I’ve just made the unfortunate realization that it’s not going to be feasible for me to do this, and I am totally pissed. The main reason why I won’t be able to sing? My stupid left foot and it’s stupid Haglund’s Deformity that we’ve just confirmed. I literally can’t walk on this foot for more than 10 minutes without being in agony, let alone stand on it for 90 minutes to sing. I would have to walk to the bus stop there and back to where we would rehearse, and I am NOT paying the $50 it would cost for a taxi each way. Even using my walker or my crutches wouldn’t make a big difference…I would still have to be on my feet to sing properly and I just can’t manage it right not. Plus, the only way that this Haglund’s Deformity can be managed is with surgery. I’ve already tried the other measures to treat it…ice, elevation, anti-inflammatories, rest…everything.
I am so mad at myself for getting my hopes up and then realizing that this just isn’t going to work. I wanted so badly to be able to sing again because I miss it so much…the camaraderie of being in a group environment, creating harmony together, performing for people…just everything. Singing in the past brought me so much joy…I really wanted to re-create those feelings again. Unfortunately, if I’m totally honest with myself, I would end up being in too much pain and too tired to really enjoy myself and now is just not a good time to do this.
I’m going to send a note to the director and ask if it’s okay to put this off until the Spring and then perhaps re-join at that time. Hopefully my foot will be dealt with by then and I’ll be recovered from surgery and no longer in pain. My regular pain I can manage, but if I can’t stand on my own two feet with just my cane, then there’s no sense in pretending. I don’t want special accommodations, I just want to be like everyone else on the risers; a regular singer.
From my Sweet Adeline Barbershop days – the link below is my quartet Quintessence singing Marshmallow World. It’s from the Christmas CD “Jingle Belles” that my chorus Rhythm Of The Rockies put out, I believe in 2004. This was when I was living in Calgary where I was a founding member of the chorus.
In 2005, Quintessence competed in Sweet Adelines Region 26 (the All Canadian Region!) composed of choruses and quartets in BC, Alberta and Saskatchewan. Every year there would be Regional Competitions held to pick winners to go to International Competitions. Out of 16 Quartets, we placed 10th overall in the competition and we won Novice Quartet of the Year which was a real honour – the best of all the new quartets!! One of my favourite memories was when we entered the theatre after coming off stage, people were applauding as they did for all the competitors, and the reigning Quartet Champions stood and applauded for us – again, as they did for each quartet, but it made me feel so special, like our quartet was so amazing. I’ve never forgotten that feeling, something likely so insignificant to them, but has had a lasting impact on me all these years later.
And that was another reason I wanted to sing. I wanted to be able to influence other singers who maybe were in a choir for the first time. I wanted to be able to encourage and inspire someone who was trying something new for the very first time. But no…my stoopid body refuses to cooperate and so once again, that freedom to do what I want when I want is gone.
Anyway, I hope you enjoy our version of Marshmallow World. I realize it’s not Christmas yet, but the weather is changing and some people Edmonton have already had snow so it’s not totally inappropriate either. Marshmallow World
And as for me, like I said, I guess I’ll revisit singing in the Spring and see how things are at that point. Hopefully I’ll be in a better place physically to be able to sing without pain and I’ll enjoy the experience even more.
there is always hope
It’s a frustrating thing when the medications you’ve come to rely on suddenly decide to stop working. Pain meds no longer manage your pain, and brain meds no longer manage your brain. It’s no fun to find yourself in this situation, but for People with Chronic Pain (PwCP), it happens all the time.
There are only 3 medications that are specifically prescribed for Fibromyalgia: Lyrica, Savella and Cymbalta. Lyrica, in particular, is known for weight gain as a side effect and when I first started taking it, years back, I gained 30lbs in 2 months time. I’m a short girl (5’2″) but I have a large frame, so I didn’t want to gain anything…I’m already stocky. I told my doctor that I couldn’t handle being so heavy (I think I went up to 160lbs), so she took me off the Lyrica and put me on the Cymbalta instead. I lost some of the weight and for a long time, seemed stable at 140lbs which I was okay with. I was still working out at the time and had a muscular body thanks to my trainer and her torture sessions every week (hi Terrianne…love you!).
Fast forward 10 years and I’m still on the Cymbalta, but I don’t think it’s as effective as it used to be. The problem is, science hasn’t kept up and there is nothing newer to try. Even though I continue to take my daily doses on schedule, I find that I develop brain zaps in between and my Fibro pain seems to have increased over the years as well. Part of it might just be from ageing, and part might be from my Osteoarthritis getting worse as well. I’ve also noticed that since I had my right hip replaced and I developed this Haglund’s Deformity in my left foot, my legs are constantly achier than they’ve ever been. I’ve always put that down to walking with a different gait, but I wonder if that’s my Fibro flaring up as well.
The other medication that has been difficult to regulate is what I take for my Bipolar Disorder. I was on Seroquel for a couple of years with good success, until I started having auditory hallucinations. I would be hearing music where other people heard nothing. It took a long time before we determined it was my medication causing the problem, including a visit to a Psychiatrist to determine that I didn’t have Schizophrenia. Once we realized the Seroquel was the problem, we switched to a new drug called Abilify. That worked great for the first several months, providing me with energy that I hadn’t had before and a whole fresh outlook on life.
Unfortunately, it also brought some side effects like shaking hands and trembling tongue and brain zaps – those internal lightening-fast buzzes in the head. We cut the dosage in half and then in half again, but to lose the side effects meant to lose the benefits as well. I see my doctor again soon and I think we’re going to have to try something new. The problem is, everything new is in the same general category as what I’m currently taking, so not sure what type of success we’ll have.
Speaking of seeing my doctor, I have to say that my new doctor is lovely. Dr Penny Wilson is from Australia and is in Canada for a year at least (with the promise that if she decides to go back to Australia at the end of the year, my care will be taken over by another doctor in the practice so I won’t be left stranded). She prefers to be called Penny rather than Dr and she’s simply delightful to talk to. She’s matter of fact and down to earth, and genuinely wants to see me as healthy as possible, so on my last visit there, to get the results of blood work and to get a prescription refill on my opioid medication, she decided she wanted me to book another appointment asap for what she called a Complex Care Review. As she said, “if anyone is complex, it’s you”. How true!
Basically, this appointment will be a chance to sit down for 30 minutes to go through EVERYTHING that I’m experiencing healthwise so we can triage what’s important, what can wait, what Dr Winston, my Pain Doctor, is dealing with, and what needs to be sent off to other doctors. For instance, I’ve had ongoing pelvic pain, likely due to a build-up of scar tissue/adhesions from several previous abdominal surgeries. I do know that when I had each of my ovaries removed, there was scar tissue attaching my bladder to my bowel. When I move certain ways, it feels like my insides are ripping apart, like velcro being torn open and it’s crazy painful. This is something I haven’t dealt with yet, because there have been too many other things wrong with my body. Penny will likely refer me to either the Gynocologist or to a General Surgeon to have a laparoscopic procedure done to see if they can remove some of the adhesions so that pain can be eliminated. Yes, a surgical procedure will cause more adhesions, but if they can get rid of 90% and have only 10% more grow, then those are good odds for me.
It feels weird to be looking forward to a Dr appointment, but I think this will be one of the most beneficial ones I’ve had in ages. I’m also taking in all my medications, so we can do a review and see if there’s anything I can stop or any dosage changes I need to incorporate. Yes, Penny is very thorough and for that, I’m very grateful. I have a feeling that when the appointment on the 27th is over, I’ll no longer have medication frustrations. What an answer to prayer!!
there is always hope!
This past summer, I wrote a post called That Which Brings Me Joy in which I talked about my hummingbirds and provided a list of things to do which could bring some joy into your life.
My hummingbirds continue to bring me much happiness. I bought a different feeder for them which the wasps that plagued me can’t get into, and I also bought a wasp trap which I’ve baited with a double concentrate of sugar water. The birds are happy, the wasps not so much, but there aren’t as many of them now with the weather cooling off as we head into fall.
I wanted to continue my list of things that might bring happiness into your lives, so here goes. I hope there are no repeats!!
Write a thank-you note to yourself (on your best stationery, of course).
Venture outside for a five-minute walk.
Indulge in a delicious piece of chocolate (or a fresh colourful smoothie).
Find a piece of jewelry you haven’t worn in a while – feels just like vintage shopping!
Pick fresh flowers or send yourself a little bouquet of favourite flowers.
Visit a funny blog, watch a movie, or spend time with someone who makes you laugh.
Find serenity at a favourite local spot (ex. a park, a lake, a coffee shop, a little nook in your house or office).
Bake a favourite treat with a family member or friend — or bake alone and surprise someone special with yummy treats.
Discover an uplifting and fun song – something new.
Slow down and enjoy a long brunch.
Try a new fitness class.
Indulge in watching tv or reading a magazine – guilt free!
Declare a vacation day – write it BIG on your calendar so you get to anticipate this upcoming personal time (a vacation day can fall on the weekend).
Do a good deed — help someone else find joy.
Treat yourself to a favourite cup of coffee or tea – enjoy the flavours and activate your senses.
Be goofy! Dance around your room to your favorite music.
Get rid of two items in your physical environment that make you feel negative.
Bite into a piece of fresh fruit.
Wear a color that makes you feel confident and joyful!
Write down three things that you are grateful for.
Call a supportive friend – or reconnect with someone you haven’t spoken to in a while.
Start a book that you’ve been meaning to read.
Browse books at your local bookstore.
Learn something new (ex. a new hobby or craft).
Write a thoughtful comment on a personal blog you read (comments mean the world to me – hint hint!).
Create a list of 10 things you love about your significant other – surprise him/her with the list.
Write a hope noteand leave it for someone to find.
Connect with your fellow tweeters. Send a tweet with a joyful message.
Create a list of 10 things that make you happy – your own personal “joy” list.
I hope you enjoy this list and make good use of it. If you have other ideas or suggestions, leave them in the comments. Thanks, and remember…
There is always hope
TRIGGER WARNING – I AM TALKING ABOUT SUICIDE
I have a poem I want to share because I wanted to reflect on the growing number of suicides that are happening in the Chronic Pain world. People with Chronic Pain (PwCP) are not getting adequate treatment and are suffering desperately, leading many to take illicit drugs off the street, which can lead to drug overdoses, or to just outright commit suicide, because their pain has become too much for them to manage.
Marijuana is becoming legal on October 17th in Canada and medicinal marijuana has been available for some time. There are several states in the US where cannabis is legal as well. Many patients find that this is a great treatment for their pain, but for those that don’t even have this option, what is left for them? Inadequate treatment plans, mismanagement of their conditions and a crackdown on necessary treatment with opioid medications because of fears of addiction. It is medically impossible to become addicted to an opioid when you’re body actually needs it. Addiction happens when you no longer NEED the drug, but you continue taking it because your body develops a craving for it.
Data indicates that from the approximately 36,000 suicides that happen in America every year, 10-15% of those are from PwCP*. That’s a powerful statistic and one that really caught my eye.
If you are living with Chronic Pain or know someone who is, and are having a hard time coping, please don’t keep it to yourself. Ask for help. Let someone know you are struggling. There is NO SHAME in admitting you are having dark thoughts or in a depressive state. I have gone through depression and so has my husband. Because of my Bipolar Disorder, I have to be on medication 24/7 or I will disappear into Manic/Depressive cycles that cause great despair in my life. The manic phases are sheer chaos and the depressive phases are dark and very scary and I have come very close to not wanting to live in those moments. It’s only because I have a great husband and a great doctor that I am still here, alive and kicking and cheering on the people like me, who live with chronic illness and mental illness and are doing life every day and surviving.
TRIGGER WARNING – this poem is about suicide
It’s hard to continue to fight and stay strong
It’s scary in dark places, where you linger so long
It’s cold and its brutal and you’ve given up hope
When you find yourself at the end of the rope
Too many times, you have been to this place
Too many times, with the tears on your face
Begging for mercy, all the words that you’ve said
And this time you’ll be using the gun at your head
You’re too tired to listen to the love all around
The words smash together til they make no more sound
It all has no meaning to you anymore
As the drugs take effect while you crash to the floor
How can I reach you, to show that I care?
How can I save you, how do I dare?
I’ll risk our whole friendship to do the right thing
While you stand on the bridge and go for a fling
In hindsight, it seems like your problems were small
You just couldn’t see it, so big was the wall
The gap that you’ve left can never be filled
The sorrow I feel will never be stilled
And those left behind will be mourning in pain
If only we had time just to talk to you again
We’d try harder to reach you, to bring back the light
We’d do everything different, we’d not stop the fight
Until we had you back safely, on this side of grave
Oh the things we would do, if you we could save.
There is always hope
I’ve been wrestling with my emotions lately and wasn’t sure if I was even going to post about them. I’ve gone from feeling quite happy about how things are going in my life to outright despair over situations I have no control over. Because I am a Christ Follower, I do pray, but there are so many times I wish I could do more for the people in my life that are suffering. It’s especially hard when my own life is going so well.
Physically, I am doing better than I have been in a really long time. My Fibromyalgia pain has been well controlled lately, without any major flare-ups, my right knee has been doing well since the Synvisc injection finally kicked in, and although the Botox didn’t work for my Trigeminal Neuralgia (I had several flare-ups after it was done), I haven’t had a major problem in the last two months. The only real problem I’m having right now is with my left foot, and what I thought was a problem with my Achilles Tendon. Overall though, my energy has been good and since my dose of Abilify was cut in half, the shaking hands and the tongue tremors and brain zaps seem to have eased up as well. My Bipolar Disorder has been well controlled and other than the fact my insomnia continues to cause major problems and I still average 2-3 hours of sleep at night, overall, I can’t really complain. I feel about as good physically as I have in the last few years and this is a real blessing.
What does have me troubled is that I have several friends who are going through really difficult times right now. One has a daughter in her 20’s with cancer, one has a young daughter with digestive issues and one has a husband with cancer. It’s hard to be so close to people emotionally and yet not able to do anything for them to help them in these battles. So, I’ve done the only thing I know how to do. I’ve sent them each a cow.
A cow named Courage.
Let me explain. I love cows…I always have. I collect them…stuff ones and china ones and figurines and you name it. I have a small collection now, but once upon a time, I had over 400 cow-related items. Now I just keep it to the figurines and stuffies, and Christmas tree ornaments. Courage the Cow was born when my very dear friend Kevin was diagnosed with Lymphoma several years ago. I sent him a stuffed cow from my personal collection to help him through his battle and now Kevin is cancer free. When I heard about my friends and the battles they were going through, I thought that perhaps a Courage Cow of their own might be a good idea. So, that’s what I’ve done. I have taken stuffed cows from my personal collection and sent them on, with a note indicating that Courage is especially talented at eating cancer cells.
Courage also brings great comfort to young children with tummy troubles – that is another speciality of his. I’ve boxed up each of these cows and sent them off and so far, two people have received theirs. The young lady with cancer has had many cuddles with her Courage Cow and has said she already feels better. She will be undergoing a third Chemotherapy treatment soon. My small friend with the digestive problems loves her Courage Cow and wouldn’t put him down. She even made room on her bed for him and apparently that was QUITE the big deal as she’s very particular about who sleeps with her. She will be going to Boston Children’s Hospital in October for a complete digestive workup to see why her bowels don’t work properly and why eating is such a problem for her. She’s 5 years old and has had problems all her young life, so hopefully, Courage will be a comfort for her. As for the final recipient, I’m waiting to hear if Courage has been delivered yet or not…I expect any day now. He discovered he had Stage 4 prostate cancer out of the blue after having no previous symptoms at all.
I’m very thankful that despite my chronic illnesses, I’m healthy in the sense that I need no ongoing treatments such as chemo, or IViG, etc. Sure, I live with ongoing daily pain and I take a bunch of medications to manage my conditions, but overall, I’m healthy for a “sick” person. I just hope and pray it stays like that. I know that I have some surgeries in my future to expect, as my left hip needs to be replaced, and a possible surgery on my left foot where I thought my Achilles Tendon was injured. Instead, it turns out I have something else, called a Haglund’s Deformity. I’ll be seeing an Orthopedic Surgeon in the near future to discuss that further. Still, I can’t complain healthwise (well, I could, but no one would listen!). I know too many people who have things far worse than me. And for them, I listen, encourage and send out cows. And I try to remind them that even in the worst of times…
There is always hope
ps: As a reminder, if anyone is interested in taking the course 31 Days of Expressive Writing for Chronic Pain and Illness that I recently completed, I have become an Affiliate and will earn a small commission if you purchase the course through this link.
The price for this course is only $39.00. There are other courses available through Esther’s site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa. Thanks very much…if you do sign up, I hope you find the course as helpful as I did.
I have just been through the very painful experience of having a computer crash and losing all my data. My backup system failed and I estimated that I lost 2 years worth of work and files, including photos that I can’t replace and documents that I have been working on for quite some time.
I try to “write ahead” when it comes to posts for the blog, so I’ve probably lost about 10 posts as well. I usually write in Mac’s program Pages, and then transfer them over to WordPress afterwards, mostly because I have more editing options in Pages. I don’t know if I’ll do that in the future. And because of the brain fog that goes along with having Fibromyalgia, I can’t remember most of the contents of them, so can’t just recreate them again. Frustrating doesn’t even begin to explain how I feel right now.
The whole thing started when I realized I had accidentally deleted a folder into the trash, and that I had emptied the trash. I went online and found instructions for retrieving said folder. Now, I use a MacBook Pro, so sometimes these tasks are a lot easier than when you use a Windows-based computer. I also was still in a drugged up mode after having had a dental procedure done the day before. These two things should not go hand in hand, but I thought I could at least follow the instructions without too much difficulty since I knew I had a backup. I managed to get to my Disk Utilities section of the computer but as I attempted to retrieve the folder from the trash, it would appear that I wiped out my entire hard drive instead.
It was the drugs. I think I probably had a moment or two where I drifted off to sleep and did some other stuff that I shouldn’t have done. All I know is that I had no folder and no hard drive in less than a minute. Wisely, I turned off the computer, panicked appropriately, and had my husband call a computer guy when he got home, so we could take it in and have it repaired. I wasn’t too worried, as I knew the computer could have the OS installed again, and I had the backup files at home.
So, that’s what happened. Off went my little MacBook Pro on Saturday morning, we had a busy weekend going for a motorcycle ride, then heading to Vancouver on Sunday for a short visit with our daughter Ashley and to meet her boyfriend David for the first time. It was a long wet trip so we had to take the truck, but both times on the ferry, I was able to stand outside and enjoy the view…including a gorgeous rainbow on the return. Then on Monday, I had a dreaded dentist appointment, but Ray was able to pick up my computer for me…with the hard drive freshly reinstalled. They weren’t able to retrieve any of my files for me so I knew I’d be busy getting everything put back.
And then the pain and frustration hit. My back up drive wasn’t working. Despite diligent use, the last backup information captured was in June of 2016. I lost 2 years worth of everything. Documents, photos, files, information – you name it, I lost it. I was absolutely devastated. Some stuff was totally irrelevant but some stuff was hard to swallow that it was gone. I have no idea why the drive didn’t work – it’s a simple external drive and I swap out my hard drive to the external drive once a month. It always appeared to be reading the documents fine but apparently, that wasn’t the case. I also didn’t have Apple’s built-in Time Machine turned on in the past, so I’ve made sure that’s on now. All in all, everything I can do to back up my computer is now in place, along with a monthly calendar reminder to back up to the external drive and to check it to make sure it works!!!
Folks, check your computers and make sure you’ve backed up your data!! Use my experience as a lesson and don’t let this happen to you.
I’m back up and running now but it’s definitely been a frustrating week. I hope you never have to go through this experience yourselves. I certainly have everything set up properly to prevent it from happening again. And on I blog.
There is always hope!
I am pleased to share a post by a Guest Blogger today by the name of Mary Gutierrez
Mary just published the following article and I thought it was important enough to feature here:
Mental Health Advocates Share How To Prevent Suicide in 60 Seconds
What would you say if you had 60 seconds to talk a stranger out of taking his or her life?
Image from Pixabay
I was flipping through my new SoulPancake book when this question jumped off the page.
What would you say if you had 60 seconds to talk a stranger out of taking his or her life?
I froze and my mind went blank. This can happen in my lifetime and I didn’t know what I would say.
So for this National Suicide Awareness Week, I’ve asked some mental health advocates to answer this question.
I hope you will never need the suggested responses and tips below. But if it happens, may they help you save a life.
Here’s What They Shared
“The pain you are feeling must feel overwhelming but If you live another day I will show you that life can be better than what you are living.” — Saaim Ali
“I can’t promise you it gets better. I won’t tell you sunny platitudes or promise you rainbows.
What I will do is ask you stay, because you’ll never know what’s ahead if you don’t.
I will do my best to help you look for the rainbows and walk in the rain with you until you can, because I’ve been there, too.” — Selena Marie Wilson
“What you’re considering doing is a permanent solution to a temporary problem. Whatever it is — I promise to help you to resolve it — but we can’t do that if you’re dead.” — Kathy Reagan Young
“ I have been where you are. I know it feels like there is no other way out, but there is hope. People care, I care. Take my hand, I will walk with you through this. Your loved one will be lost without you. One step at a time, one minute at a time. We can do this together. You are not alone.” — Crystal Fretz
“I’ve been there, and I just want you to know that even though it doesn’t seem like it right now, at this very moment, there is hope. You are loved. If you can’t think of a single person who loves you, know that God loves you. I love you because you are a beautiful creation of God. I’ll go with you to find help. I’ll stay with you until you feel safe. You are not alone.” (coupled with questions about the person and things they like/dislike, points we may have in common, and non-threatening body language — adopt the same gestures they use, sit and or stand in the same posture — mirror them so that they can feel the empathy and love). — Anita Ojeda
“There’s a whole bright, beautiful world that needs your spirit in it. It feels dark, lonely, and hopeless right now, but it’s not. There’s help for you, there are people who care about you, and you are so, so much more valuable than you realize. Let’s talk about what resources are available and which one you think will work for you, and I’ll help you make the call if you want. You’re not alone. I’m here to help you. It will get better.” — Olivia Sod
“Trust me I understand how you feel, I’ve been there myself. But hang in there. Sometimes it doesn’t make any sense, but just hang on. Hang on. Hang onto life.” — Sheryl
“A lot of times, people who commit suicide believe the people in their lives would be better off without them, so I’d tell them they wouldn’t and I know. My brother committed suicide and it was the worst thing I have ever experienced. I’d tell them there would be way more people than they realized that would be impacted by this choice and there were more people that cared about them and wanted to help than they realized.” — Rosanne
“As worthless and hopeless and terrible and dark as you feel, this isn’t the end of your story. You can have light and hope and worth and joy. Don’t make a permanent choice that will affect your family and friends long after you’re gone. They need you, whether you think they do or not. You need them, too. Cling to the life God’s given you, even if you have to hold on by your fingernails and it feels too hard. This isn’t the end of your story.” — Anna Huckabee
“Keep them talking basically. When it came down to it and my friend threatened to jump off a multi-storey car park, I told him that if needed I was going to rugby tackle him and sit on him until the police arrived and could restrain him properly (they were already on the way anyway). Probably not the most official way to deal with it but while doing it, it kept him focused on me and talking to me rather than the other things that were going on. My friend has since been diagnosed with a version of Bipolar rather than depression. Unfortunately, it took a number of years to get past the diagnosis of depression or stress.” — Hannah
“What can I do to help you? (And I would start to tell them about my mother and ex-boyfriend and how they took their own life and that it’s okay to ask for help.) Everyone needs some kind of help throughout life. Just let me try to help you.” — Chasa Fulkerson
“The pain you feel right now? If you allow it to end your life, the same pain will attack your family and closest friends because they will miss you. After you are gone, the pain will be allowed to grow bigger and bigger! Let’s fight this together now and end the pain, but keep your life. You DON’T want to suffer through all this darkness for nothing, do you? Because on the other side of this darkness, this grief, this pain is something worth living for joy and hope. Let’s find some of that for you! I have a list of great resources!” — Chris Moss
“Listen, I’ve been there too. Right where you are. 10 years ago. So much can change in the next year for you. Don’t convince yourself that there’s no hope. That’s a lie from the pit. You have a gift and worth and value, and the devil is trying to keep you from giving it to the world. God cares about you and loves you, and has plans for you for a purpose and good. It doesn’t matter what you’ve been through or done, there is hope for a happy and joyful life! Come with me. Please let me tell you my story.” — Abby Karbon
“This may be hard to hear right now but you are worth so much, just by being the only you in the world. You will be making a decision that you can not take back while going through emotions that will very well pass, even if it takes a little work. You are not alone, even if you feel like it. There are millions of people who feel just like you. Talk to me. I’m here to listen. I’ll never shut you down. You can trust me. I know what it’s like to feel like the world would be better off without you. Don’t listen to those negative thoughts. You are worthy and you will get through this.” — Cortney Kaczmarek
“You are needed. You are necessary. You are loved.” — Barbara Moore
“That life will be good again soon and that it’s an illness causing all the pain. They can get better and they can enjoy life once more they just need some help.” — Hazel Jackson
“Hey there, I know you don’t know me but I’m here and I care. Please just come, talk to me, let’s get a coffee and restart. You won’t be able to take this back. I get it but I also just want to know your story, I don’t want this to be an end to our conversation. All the things you are feeling must be overwhelming so let’s just calm down and breathe. We can talk when you’re ready.” — Emerson
“Being on the other end of it, I was told ‘it’s not worth it. This will pass and I will stay by your side and be there always.’ And that person to this day is still always by my side making sure I’m okay. And this was a few years ago. — Hailey Giambelluca
“You are loved. You are taking an easy way out, but what about the ones that love you? What about the ones that fight for/with you? We would be slowly dying inside if you were not here!” — Angel
“I can’t tell you what to do but I see you and I care. You’ll leave a hole in the universe that no one else can fill. This world is more meaningful with you in it. Please sit with me and tell me where it hurts. I’m listening.” — Emma Frances
“There is help out there. This solution you are considering is permanent. There is no coming back. You may feel you’ve tried everything, but there are specialists that can ease your suffering. There are many options available to you, and I will help you each step of the way. The symptom of suicidal ideation leads you to believe there’s no other hope. I can attest as someone who’s been in your shoes there is. And I’m glad I didn’t make that permanent choice. So please come with me and we can find help right now.” — Ben Barrett
“Give me your hand. Come closer. *if okay I’d give them a hug* I truly do understand this feels like the only way — I’ve had the same thoughts and experienced it with a loved one. I’m not going to tell you the usual things …the things you know. Just, remember that there is hope. I’ll come with you. I’ll help however I can, even if it’s just to listen…I will not judge you for your experience is yours and must be heard. Give me your hand.” — Eleanor Catalina Stevens
“Up close it’s hard to see a way out or the greater plan, but everything always works out in the end. So many people find times in their lives hard, but keep going and when you look back, you will see that it was all part of a greater plan.” — Laura P
“Let’s get you help! Who knows, you can overcome your depression and help others who are struggling, one thing is certain we need people who understand us, come with me, we’ll get you help, we’ll keep trying until you find a therapist you are satisfied with.” (this is just a note that I will help him/her get the help they need even though I don’t know them and they don’t know me). — Jazz Williams
“Things do get better. There are brighter days ahead but you have to stay here to see them. The world needs what you have.” — Wrae Sanders
“It’s okay to not be okay. And it gets better. Just stay. Use your voice to breathe life into a conversation that must be had. You are worth more than making a permanent decision based on a temporary emotion or thought. You are loved, and you can rise up once again.” — Maria Thomas
“You matter. You have people who care for you and will miss you. Your death will not relieve anyone else of a burden or make someone else’s life easier. Hold my hand. I am here for you and the journey ahead. It will get better.” — Teresa Colón
“Choosing to live, even though you are in deep pain, is courageous. That choice will help you take a step out of the darkness and into the light. That choice will prove to the world that you are stronger than your pain. That choice will prove to your pain that you are ready to fight back. That choice will begin your path to the help and support you need. I am here, talking to you, which proves to you that I care. I want to help you. And I will lead you to another person who will help you. And that person will lead you to another person who will help you. And another. And another. That path of people will be there for you as long as you need them. That path of people who care about you will lead you to safety, kindness, strength, and love. Take my hand right now, and let me help you start that path toward love.” — Kate Johnston
“Life is full of challenges, but that’s what teaches us to appreciate the good stuff. Today might be a challenge, but we’ll figure out a way to make tomorrow better. You matter in this world, and you are loved.” — Christalle Bodiford
“Think of those who love you and how it will destroy them to see you go my friend come with me to a better life.” — Robin Tomlin
“I would say that this is a very permanent decision for a temporary problem and ask them to talk to me, no matter how long it takes until they realize that someone cares. I would also tell them that there is always hope, that things can get better and that I will support them in getting the help they need to find their happy again.” — Pamela Jessen
“The Universe Thought You Were A Good Idea! So Hold On Tight And Stay, The Sun Is Coming For You! You Are Loved And You Are Needed In This World!” — Kristal @ The Fibromyalgia Pain Chronicles
“I know you think this is the only way to make the pain end. I don’t think you want to die. I think you’re just tired of living I’ve been there. I UNDERSTAND. I think you want to end the pain and suffering. I understand. But, don’t make a lifetime decision on today’s emotions. Emotions are fleeting. You might feel worthless. I bet you think you’re a burden or nobody will notice you’re gone. I would. I noticed one of my best friends every day is gone. I will be here for you. Keep talking to me. I will talk to you as long as you need to talk. I will be here for as long if you need me to be. We will get you through this together. The world needs your story to continue. You are destined for greatness.” — Jamie
“I would answer that ‘Hi this is Roger’ and if they said ‘I want to kill myself’ I would ask why and let them answer — then depending on what they said and how they said it — I would either ask them a few more questions or engage in a conversation letting them know that I was there and would listen and that I wanted to help — then let God be the Guiding Force while letting them know that I cared and they were precious and worthwhile.” — Roger Potter
Your Turn
How about you? What would you say if you had 60 seconds to talk a stranger out of taking his or her life? Let us know in the comments below.
If you liked this post, you might also like the Spoonie Secrets series. It’s a safe space for people with chronic illness where they can share their deepest and darkest secrets anonymously. Check out the first issue here.
https://medium.com/@mary_gutierrez/mental-health-advocates-share-how-to-prevent-suicide-in-60-seconds-94ac2f0c97ce
What a powerful post, Mary!!! Thank you for allowing me to share it on my blog. As I always say:
There Is Always Hope.
My daughter Ashley is a groom to thoroughbred racehorses at the Hastings Park racetrack in Vancouver, BC. She has been doing this for over 23 years now, since she was a teenager and loves every minute she spends in the barn with every horse she interacts with. She grooms the horses in her care, takes them out to the paddock on race days, and picks them up again after the race to walk them and cool them down before preparing them for the night. She’s never once not picked up a horse after a race. Until Friday, August. 24th.
The horse she groomed that night was Ceder Chines, a beautiful Bay gelding. It was the 4th race with a field of 6 and everyone got off to a good start. Cedar Chines was running in 3rd place as they were coming off the far turn and heading towards the backstretch when he suddenly stumbled in distress. The jockey, David Lopez quickly pulled him up and out of the race and held him steady until the horse could be taken by wagon off the track – it appeared that a knee injury had occurred and Ashley was unable to walk her horse off the track that night. X-rays were done and it showed that the knee was literally shattered. After discussion with the owners and trainer, Cedar Chines was humanely put down the next morning, as there was no way to recover from such a devastating injury.
Ashley was inconsolable. She’s never lost a horse before and even though these aren’t horses she owns, she treats every horse she grooms like they belong to her. She loves them all with the deepest love in her heart and gives 100% of her best self to them when she’s taking care of them. The thing was, she couldn’t just give in to her grief, as she still had another horse to prepare for the paddock for the ninth race. Can you imagine what that’s like, knowing one horse you love has broken down and yet still having to send another horse out on the track to race. All you want them to do is come home safe – at that point, you don’t even care if they win.
Living with chronic pain is similar in a lot of ways to horse racing. Waking up every day is a gamble as you don’t know what the day is going to bring. You can start out feeling pretty good, and then all of a sudden “wham!”…you’re in the middle of a Fibromyalgia flare-up, or suddenly it’s a Migraine starting, or your Trigeminal Neuralgia triggers, or your MS relapses. You simply have no way of knowing when any of these events are going to happen. Or, maybe you wake up feeling kinda crummy, but as the day goes by, you start to feel better as you take care of yourself. With the proper grooming – a good breakfast, a shower that doesn’t hurt for a change, clothing that feels good on the skin, a walk that doesn’t exhaust you – and suddenly, you’re feeling like a winner!!
At the end of the day, you just want to come home safe. Whether you ‘re still working while living with Chronic Pain, or you’ve had to give up work and other activities, the ultimate goal is to live as pain-free as possible. You resort to your comfort measures and other tricks like meditation music to help bring down stress levels, you do what you can to get a good sleep and you just hope and pray you wake up in the morning feeling good. Less pain, refreshed and ready to face the world, like a champion racehorse might feel.
And like a racehorse needs a good groom to take care of them, we have our support systems too. Sometimes it’s a spouse, sometimes it’s a hired caregiver – whoever it is, we depend on them for a little or a lot of our care. If a groom is sloppy with a horse, for example, not wrapping the ankle bandages properly, then the horse has no chance of winning. If we or our caregivers aren’t doing the right things for our health (proper nutrition, exercise, etc), then we have no chance of improving in the larger sense with our pain management.
I wish that it was easier to live with Chronic Pain. I wish I could wake up, eat some breakfast and go for a walk and all would be well, but it’s just not that easy. Life as a race horse sounds much easier in many ways, but when you see how fragile the ending can be, you realize that the horses have it just as tough as we do. I think I’ll stick to being human, and deal with my issues one day at a time, just as I always have.
There is always hope.
I recently had the opportunity to take part in a course called 31 Days of Expressive Writing for Chronic Illness and Pain by Esther Smith at who runs the Life In Slow Motion blog. This course normally retails for $39.00, but was provided to me for free in exchange for my review which follows below.
I loved it!
The course is designed with several chapters, each one giving you the opportunity to journal about various aspects regarding pain. It starts out with Your Story and asks the first question:
What are the biggest challenges you have faced over the past months and years of living with chronic illness/pain?
You are given time to journal the answer and then asked a series of further questions to help you dig deeper into the answers you’ve provided. Other chapters include:
Grief – you are asked to journal about the 5 stages of grief
Faith – How has your faith changed over the years?
Relationships – You have several journal options to choose from here
Strength, Joy & Hope – a running log of 4 different categories over a week
Finally, you set your Goals for the future by journalling through the various prompts that are provided and then setting SMART Goals for the future.
This course can be done quickly, but I highly recommend you take the time to move at a slower and more thoughtful pace. This is an opportunity to really dig deep into the soul to find answers buried deep. This is your personal journal that you are welcome to share, or to be kept private, so be your authentic self when you write and don’t hold back.
For me, this course really helped clarify how I look at my chronic pain and the words I’ve used to describe it in the past. The course was a challenge at times, but a good one in that the prompts make you go deep. Because the writing is just for you, there is a basic honesty that is drawn out knowing that no one else is going to read it unless you choose to share it. You can’t lie to yourself so you might as well put that raw truth down on paper. It provides a sense of ownership when you see the words in front of you.
The course was well laid out, easy to understand and while it does draw some content from Scripture, I think it would appeal to both a secular audience as well as a Christian audience.
I highly recommend this course for anyone who lives with chronic pain and is trying to find a way to express themselves and what they are feeling in a more clear and concise manner. By finding my voice, I felt like I was better able to manage my pain, so Esther, thank you so much for helping me find the words I was looking for.
If you are interested in taking this course, I have recently become an Affiliate and will earn a small commission if you purchase the course through this link.
The price, as mentioned at the beginning of the post is $39.00. There are other courses available through this site, including What Really Helps People With Chronic Pain for only $99.00, and Pacing For Chronic Pain, priced at just $69.00. To sign up for these courses, please make sure you use my Referral Number 19f3aa
I am delighted to endorse these three courses for anyone living with Chronic Pain. The information has been thoroughly researched and collated by Esther Smith, who has an MA in Professional Counseling and a certificate in Biblical Counseling through the Christian Counseling and Educational Foundation. She is licensed as a clinical counselor in the state of Maryland, and provides a variety of resources for people impacted by chronic pain.
Reviewed with honesty and full disclosure on September 4th, 2018.
Pamela Jessen
There Is Always Hope
cc: Esther Smith, Life in Slow Motion
Hi, how are you? How are you doing? How are you feeling these days? Oh boy…do you ever get those loaded questions? I do and as much as I appreciate that people care and want to know how I am, I also wonder if these are “polite” questions, or do these people genuinely want to know how I am. It’s so hard to know how to answer. So, generally, I respond with, “I’m doing okay thanks”. But what if I told the truth? The truth is, I’m struggling right now. I’m struggling physically with pain and exhaustion and I’m struggling with my blogging and I’m struggling with feeling lonely and housebound, but I’m pretty sure no one really wants to hear about all that when they ask me how I’m doing so I don’t tell them. But I’m going to tell you. I’m averaging about 2-3 hours of sleep a night right now. I manage about 45-60 minutes at a time and then I wake up. I feel like I’ve slept for hours, but I look at the clock and barely any time has passed at all. I’ve always struggled with insomnia and I’m going to be trying some new meditation music, but it’s frustrating to not be able to get decent rest. It doesn’t allow my body to heal, which contributes to my overall pain. As I type this, I can feel my hands and legs and feet throbbing with pain. It’s almost like a drumbeat – thump THUMP thump thump, thump THUMP thump thump, thump THUMP thump thump, over and over again. My legs muscles feel tight and almost crampy and my fingers and toes feel swollen. My back is tight and tense and I can also feel the tension in my jaw and neck. My vision is blurry and I can feel the spot just under my cheekbone where my Trigeminal Neuralgia flares up – it’s gently pulsing, almost like it’s teasing me. Now, I don’t tell you this to ask for sympathy. It’s just stating the facts. The same as I’m struggling right now to come up with various subject matter to blog about. With two blogs on the go now, I’m working at how to monetize one of them, and keep this one for posting on. I’m taking some courses about how to make money blogging and I’ve signed up to review a couple of courses as well. In the midst of that, I’m also taking a general writing course, plus I’ve applied for a new volunteer position – another committee that I’d like to be a part of. I’ll be back to work on one of my current committee assignments soon, which I’ll write about, but it still leaves me struggling with core subjects to blog about. It’s not for a lack of writing prompts, that’s for sure. Generally, what happens is I get an idea in the wee hours of the morning and then I write like crazy and bang out a post in about 30 minutes. It happens when I write poetry too. It just comes to me, I don’t plan it. When I wrote Wistful Thinking, I literally had the idea and the concept and completed poem done in 10 minutes. The other issue is that I’m housebound for the most part. It’s because I don’t do enough to get out and about, because of pain and exhaustion (and because I’m busy blogging). Well, no more excuses for that. I just bought a new walker/rollator to get me out moving again. She’s a pretty silver/blue Xpresso and I’ve named her Bluebird: Isn’t she lovely!! So much nicer than my old one, as there are no exposed cables, the basket is deeper, the seat is thicker and so is the backrest, and the wheels are designed to go over gravel and other rough surfaces. The handle area is large and smooth and she rolls beautifully, plus it’s still a one-handed close…I just pull up on the handle in the middle of the seat and voila! she folds sideways, so easy to transport when needed on the bus!! Hopefully, this will be the incentive to get me out and about more often…there is a gorgeous lake just 15 minutes from my house with a perfect walking path around it and I’m making it my goal to get down there at least once a week. I also plan on getting back in the pool, and Bluebird will be great for walking to the bus and back. I’ll be speaking with my new doctor in the next week about taking an Aqua Therapy course at our local Pool and Fitness Centre. It’s a specialized one-on-one program for People with Chronic Pain, working with a registered Kinesiologist to help with rehabilitation in the pool, so it’s easy on the joints and muscles. By getting my doctor’s approval, there’s a good chance I can have the costs paid by my Long Term Disability provider. I’m excited about it and even though I have to take a bus to get there, it’s only a 20-minute ride. I’m sure there’s parking available for Bluebird as I’m not the only one who takes these types of classes. I’ve also been trying to be more physical at home, and not just sitting in my recliner all day (although it is rather molded to my butt shape). I’ve been doing wall push-ups and bicep curls and was trying to do squats as well, but those became too painful for my knees and ankles. I’m going to start doing planks to see if those work and maybe some gentle lunges with no bouncing. Everything hurts my joints so much, but I need to become more flexible. I think my Achilles Tendon is ultimately going to need surgery as it’s responded to nothing else we’ve tried – no physio, no stretching, no taping. I’m not sure what else is left, but I see Dr Winston soon, my Physiatrist and we’ll talk about options. It’s slowing me down and affecting how I walk and causing my left hip to have even more pain than necessary, which is going to increase the time before needing a hip replacement on that side as well. I’ve also developed some painful Neuropathy in the left foot, on the top and into the big toe, that might be related to my Type 2 Diabetes, so more to talk to my new doctor about. This just came on in the last few days, while on the motorcycle trip. Mentally, I’m worried because I think I’m going to have to come off the drug I take for my Bipolar Disorder and it’s the med that has given me all the energy I’ve had lately, Abilify. It’s causing me some major side effects; brain zaps, tongue trembling, handshaking, vision blurring and an uncomfortable amount of weight gain. I’m only 5’2″ tall, so any weight gain over 145lbs is too much and I’m up to 160lbs. It’s the brain zaps that are the worst though…I can actually feel them…they’re like an electric shock in the brain, but in high speed, and you can both feel them and hear them – a lightning bolt that goes right through the head from one side to the other. If I had to describe them based on something we physically have, I’d say it’s like one of those electronic fly killers that buzzes when it kills a fly…same sound, that bzz-zap! Annoying!!! There are good things happening in my life though. Ever since we bought our new motorcycle, I’ve been able to get out for more and longer rides with my husband Ray, which is a real treat for me. Our new bike is a 2007 Yamaha Venture and more of a cruiser than the sports bike we had before, a Kawasaki Concours. The Venture is super comfortable for me and I’ve been able to go for longer rides each time we’ve been out, including a very recent Grand Adventure! Ray and I took the bike and went to Mt. Vernon, Washington to visit an online friend of mine named Maura so I could hang out with her and binge watch the second season of This Is Us, a tv show that I started watching on Netflix, but is no longer being carried there. Maura is a huge fan as well, so I spent 2 days with her watching the show while Ray went off exploring on the bike, then we hung out with her and her hubby Paul for dinner the first night (and with their daughter Anna – their son Matthew was out), and on the second night, we took them out for dinner at a local pub. On Saturday morning, Ray and I left at 5am to head for home, taking the I-5 freeway to the Blaine border crossing and then the Tsawwassen ferry home to get back to our cat Dorie at just after 9am. Altogether, I’d say I spent 2 hours in the saddle but every second was great!! I know I can go for longer now and be comfortable. I can get on and off the bike easily, and it just feels good to ride. As an added bonus, I have a new leather jacket and gloves! Ray bought them for me on Saturday, August 25th here at a leather shop close to home. I really wanted pink, but decided this black jacket was too sexy to pass up! It has just enough detail on it to make it look sharp without being tacky. The leather is buttery soft with black stitching up the sides on the back, and on the back of the arms from the wrists to the elbows. Ray will have to put a new snap in at the wrists to make them tighter (I have short arms and tiny wrists) but it fits beautifully everywhere else and I’m delighted to have it. I also bought proper bike gloves – I got gauntlets, the kind that goes over the jacket sleeves to protect me from bees flying into my sleeves, etc.
Here are a few pictures. I’ve also included a picture of yours truly with my hubby Ray, as we were coming home from our trip. It was taken on the ferry from Tsawwassen, BC to Victoria. I’m still keeping busy with my volunteer work and have applied to sit on a new committee for Island Health’s Laboratory Services Quality Council. I access Lab Services every three months for blood work, so thought it might be fitting to be a part of their quality control council. I’m also waiting to hear back on a couple of other opportunities I had my name in for so it could be an exciting fall! So there you have it…a bit more about me and what’s been going on in my life and how I’ve been truthfully feeling. The next time someone asks you “how are you doing”, how will you answer them? With a short predictable answer? Or will you tell the truth? There is always hope
Getting to know all about me!!!
It occurred to me that I’ve written a lot about my illnesses, etc. but I haven’t told you a lot about me, the person, so I thought I’d change that today. One of my favourite bloggers sent out a post with some questions on it that was a great start, so here we go: What is your favourite summer holiday destination?
Hubby and I tend to stick around the home during the summer, but because we have a new motorcycle, we are exploring a lot more on the bike! I can’t go super far because I tire out fairly quickly but we’ve gone as far as Mill Bay and round-trip home on the Mill Bay/Brentwood Bay ferry, and then on other trips, out to Sooke and Metchosin. We just took a road trip from August 22-25th, going to Mt. Vernon, WA to meet an online friend in person for the first time! Maura and I binge-watched the second season of This Is Us since I can’t get it in Canada, and Ray explored the roads on the bike and then we all got together for dinner in the evening with Maura’s husband Paul joining us. We had a great time! On Friday, the 24th, Maura and I met up with another online friend of mine whom I’ve met before and had lunch. It was nice to introduce Megan and Maura and I think that will be another friendship that will blossom. Ray and I returned home on Saturday and I’m sure the cat missed us – she wouldn’t leave our laps for the rest of the day!
A favourite childhood memory of summer?
Every summer my family would go to Powell River, BC and spend at least 2 weeks at my Aunt & Uncle’s cabin on Powell Lake. No electricity, no washroom (just the outhouse) but more fun than I can possibly remember. Swimming, boating, water-skiing, skinny-dipping, hanging out with my best summer friend Tina…those were always the best 2 weeks of my life. Which do you prefer ice cream or frozen yogurt?
Absolutely ice cream!!!! I love plain vanilla because I can dress it up in so many ways – with peaches or berries, or chocolate fudge and marshmallows, and I especially love it with chocolate pudding on top! What is your go-to dinner on a hot summer evening? Feel free to share the recipe!!
Easy Ranch potato salad. Boil potatoes, let cool. Cut into cubes, add chopped celery, cooked bacon bits and ranch dressing. Mix well, add chopped green onion and chill until serving. What is your favourite BBQ food!
Pork chops, potato and corn on the cob, all cooked in a foil pack.
Ingredients
½ cup barbecue sauce
¼ cup honey
2 teaspoons ground cumin
4 pork boneless rib or loin chops, 3/4 to 1 inch thick (1 1/4 pounds)
2 large ears corn, each cut into 6 pieces
1 cup baby-cut carrots, cut lengthwise in half
2 cups (from a 1-pound 4-ounce bag) refrigerated cooked new potato wedges
1 teaspoon salt
Steps Heat coals or gas grill for direct heat. Spray half of one side of four 18×12-inch sheets of heavy-duty aluminium foil with cooking spray.
Mix barbecue sauce, honey and cumin in small bowl. Place 1 pork chop, 3 pieces corn, 1/4 cup carrots and 1/2 cup potato wedges on centre of each sprayed foil sheet; sprinkle with 1/4 teaspoon salt. Spoon 3 tablespoons sauce mixture over pork and vegetables on each sheet.
Fold foil over pork and vegetables so edges meet. Seal edges, making tight 1/2-inch fold; fold again. Allow space on sides for circulation and expansion.
Grill packets 4 to 6 inches from medium heat 15 to 20 minutes, turning once, until pork is slightly pink in centre. Place packets on plates. Cut large X across top of each packet; fold back foil. A song or songs that take you back to an amazing summer.
Mine are all movie soundtracks, so I’ll go with the Star Wars soundtrack. Any summer with Star Wars is a good summer. How do you beat the heat in the summer?
I’m usually indoors with my fan blowing and a nice cold drink of flavoured water. Do you prefer swimming in the ocean or a pool?
I live within walking distance of a wonderful lake with a great beach, so I’ll say the lake first, then the ocean. I only like the pool for doing Aquafit. I’m not far from the ocean so prefer to do my walking there, on the beach with the water lapping at my toes. What is your preferred summer vacation? Travel with family? Solo? Or Friends?
If I was travelling, it would be with Hubby only. We’ve done a couple of cruises and would like to do an Alaskan cruise next. I would love to do a World cruise if money were no object!
So, flip-flops or bare feet?
Neither! I can’t wear flip-flops and my feet are too sensitive to go barefoot so sandals it is! Sundresses or Shorts?
I’m totally a sundress girl! I wear dresses all year long, even in winter. I prefer them over pants any time of the year. Fun Summertime Activity?
As per the above photo, I love to go visit the goats at the Beacon Hill Children’s Farm in Victoria. There are always baby goats there and as you can see, all the goats love to rub their heads on my bright pink crutches and scratch where their horns used to be!!
The Stream of Consciousness word for this past Saturday is Notice.
I have noticed an influx of hummingbirds in our area lately, so I recently put a hummingbird feeder in our backyard. We live in a complex of 12 townhouse units, all single level, and ours backs on to a small greenbelt. Almost all of the neighbours have feeders as the trees here are filled with hummers – I’ve seen upwards of 20 of them flitting around at any given time.
After putting up my feeder, I also noticed we had a huge problem with wasps. The first feeder type I had, the wasps were able to get into the nectar, so I swapped it out for a better design. On this one, the wasps can’t get to the delicious goodies within, but they still try, and it was keeping the hummingbirds away, so I purchased a wasp trap and hung that nearby, filling it with a combination of sugar water and two drops of detergent. It was quickly found and became very attractive to the wasps, and the hummers were able to enjoy their own feeder again without any problems.
Unfortunately, there were so many wasps we realized there must be a nest nearby. My hubby took a look around and sure enough, we found a nest in the outside dryer vent. He did give it a good spray with wasp killer, as much as I hate we had to do that but there were just too many of them to leave it alone. Our neighbours next door, Gail and David have a nest somewhere too, and so we are considering calling in Pest Control. Gail hates to kill anything and said that she had a wasp trap once, but it took too long for the wasps to die and she felt she was torturing them, so she took it down. Mine was also getting a lot of ants, but once I oiled the string on it, they stopped climbing down.
So, I’ve just cleaned out the old wasp trap and there were probably 20 dead ones in there plus a couple of live ones. I dumped them down the kitchen sink and used hot water on the live ones to flush them out and down the drain as well. I’ve never been stung before, but they don’t scare me. I cleaned out the trap, re-baited it and hung it back outside and from where I am sitting, I can see it’s already caught two more. The hummers probably won’t be back until later this evening when it cools off again, but they’ll be happy to know they won’t be bothered. I’m hoping I’ll get multiples at the feeder – it’s designed to hold 4 birds at a time. I promised my dear friend Charlotte I would send her a picture of the birds feeding but so far it’s only been one bird at a time, and they choose the back of the feeder where I can’t see them to take a picture. Typical!!
I love watching how delicate the birds are, but how aggressive they become when they feed…their lunging beaks almost attacking the yellow bulb of the feeder as they hover in mid air, sipping and thrusting and sipping and thrusting. I have a “birds eye” view of the action and they are such a marvel to watch, with their jewel colour bodies flashing in the sun. Here in our area (Victoria, BC) we mostly get Rufous and Anna’s Hummingbirds,
Yet as delicate as they may appear, they are a hardy species, with the Rufous variety here during the spring and summer, and then spending their winters on the U.S. Gulf coast and Mexico. Although an unusual sight fifteen years ago, Anna’s are now winter regulars at many Victoria feeders. Anna’s are with us year round and we notice their presence at feeders is more obvious because their numbers are increasing locally. Both types are entertaining, and I get such joy watching them.
I strongly advise anyone to research the type of birds you get in your area, and then to put up a bird feeder, especially if you get hummingbirds. Making the nectar is as easy as making sugar water for them, and they are so fun and a real joy to watch.
There is always hope.
Every now and then, I need to indulge my pain days with something designed to make me feel better and sometimes, that’s food. I want to share a recipe with you today that gets great reviews whenever I make it. I baked an extra one of these Cherry Cakes and gave it to a dear friend, who shared it with her co-workers and they all raved about it!!
I hope you enjoy it as much as I do!!
Cherry Vanilla Cake
Ingredients:
6 tablespoons (85 grams) unsalted butter, at room temperature, plus extra for pie plate
1 1/2 cups (188 grams) all-purpose flour
1 1/2 teaspoons baking powder
1/2 teaspoon table salt
1 cup (200 grams) plus 2 tablespoons (25 grams) granulated sugar
1 large egg
1/2 cup (118 ml) milk
1 teaspoon (5 ml) vanilla extract
1 pound (450 grams) cherries, pitted and halved
Process:
Preheat oven to 350°F (180°C).
Butter a 10-inch pie pan or 9-inch deep-dish pie pan (what I used).
Whisk flour, baking powder and salt together in a small bowl. In a larger bowl, beat butter and 1 cup sugar until pale and fluffy with an electric mixer, about 3 minutes. Mix in egg, milk and vanilla until just combined. Add dry mixture gradually, mixing until just smooth. Pour into prepared pie plate. Arrange cherries, cut side down, on top of batter, as closely as possible in a single layer (though I had to overlap a few to get them all in). Sprinkle remaining 2 tablespoons sugar over cherries.
Bake cake for 10 minutes then reduce oven temperature to 325°F and bake cake until golden brown and a tester come out free of wet batter, about 50 minutes to 60 minutes. (Gooey cherries on the tester are a given.) Let cool in pan on a rack. Cut into wedges. Serve with fresh whipped cream or ice cream.
Cake can be stored at room temperature for up to 2 days, loosely covered, but good luck with that. This cake also freezes well. Store in an airtight container and bring to room temperature before eating.
Note: I like to heat my slice of cake before adding whipped cream or ice cream. Fifteen to twenty seconds in the microwave is usually sufficient. Enjoy!!
There is always hope!
courage is not just the roar of a lion
but sometimes a kitten who’s found his meow
courage is often the strength of a person with pain who has learned
that forever starts now
courage is knowing that waking means facing a day
where it hurts just to breathe in the air
and everything aches from the tip of your toes
to your legs and your arms and the ends of your hair
but still you get up (or not, it’s okay if you have to
stay in the bed, no one will mind) because courage is knowing that
that’s what you do and you face the day head on, and see what you find
you take nothing for granted and are silently grateful for every
blessing that passes your way
because courage is not just the roar of a lion
but the strength of a pain warrior who faces each day
I’m taking part in another Blog challenge. This one is a #BlogBattle and involves the use of the word Moon:
The moon makes me wistful, it’s so far away yet it’s filled with the dreams and the hopes of the men
and the women who knew that one day, they would walk on it’s surface, they just didn’t know when
And all those years ago now from when it first happened, we haven’t been back and I worry about why
Does the moon feel left out? Does it ever feel lonely? I wonder if Moons even know how to cry?
It probably thought we were first of the many who would come to pay homage and visit and stay
But after the hoopla and the sciencing was over, we all said goodbye and we rocketed away
Now the Moon overlooks us, and I overlook it and I’m wistfully thinking I’d like to go there
What a joy it would be just to soar in the sky and perhaps see my home as I fly through the air
Imagine my new home where my body could be free of the earthly restrictions I currently feel
My pain would be less as I soar spaceless and free, now that sounds to me like one heck of a deal!
Alas, I don’t think that dream is likely to come true, but I can sure be inspired when I look at the Moon
And one never knows as our science evolves, perhaps someday I might get there, sooner than soon. 🙂
there is always hope
~ Pamela ~
I’m awake. Again.
I went to bed around 9:50pm feeling pleasantly tired. I was yawning after a long day and having been up since 4:30 am. I followed my nightly routine, got into bed, got comfy and drifted off to sleep.
When I woke up to pee, it was no big deal…I’m not a great sleeper and I figured this was my usual “90 minutes later” wake up call.
I’d slept for 72 minutes. I think that’s a record for shortest time at night. And the worst part was I was wide awake. Like…wide awake. There was no chance I was going back to sleep.
I hate having insomnia. I don’t know if it’s Fibromyalgia induced, or if it’s because of my sleep apnea or if it’s because of the medications I take, but I haven’t slept for more than 2-3 hours a night in over 5 years now. And once I wake up at 4am-ish, that’s it, I’m up for the day. I get the house ready for the day before my hubby gets up for work – the blinds open, the kettle ready, last nights dishes put away, the cat fed…those sorts of things. I make a coffee, come sit in my recliner and then hubby is up and I’m out of his way while he starts his morning routine. It works for us, and nobody gets hurt! Once he leaves for work, I have my breakfast and then I look at the long day ahead of me and figure out what I’m going to do to fill it.
Do I go back to bed after that? No, because as tired as I am, the best I’ll do is sleep for an hour and what’s the point? If I’m going to nap, I’d rather try to save it for later in the day, when there’s a chance I might sleep longer. That’s my hope anyways, Besides, if I sleep in the morning, I might miss the hummingbirds who come to the feeder on my back deck
Sleep, or the lack of it, is a major side effect of having Fibromyalgia. Statistics show that people who have Fibro never make it into the deep REM sleep the way they need to so they miss the restorative sleep phase so necessary to feel rested:
It’s no wonder I can never feel rested! I never get to the restorative stage! I also know I have sleep apnea. I have a CPAP machine and I have tried so many times to use it but I just can’t get used to the mask. I’ve tried a few different ones too, including over the face, and the current choice of the nasal style, but the longest I’ve lasted with wearing them is 4 hours before I wake up ripping them off of me. The worst part is that I am a side sleeper and trying to keep the damn things in place while on your side is next to impossible. Okay, maybe I’m just complaining because I don’t want to use the machine…how incredibly unsexy is that thing! but Hubby should be using one too and he refuses so part of the problem is also resentment.
So, after waking up after my glorious 72 minutes of sleep, and in the interest of good sleep habits I got up. At least I know better than to lay in bed, just hoping I’ll fall back asleep again. Here are some of those good sleep habits I’ve learned about over time:
Keep a consistent sleep schedule. Get up at the same time every day, even on weekends or during vacations (hello 4am!)
Set a bedtime that is early enough for you to get at least 7 hours of sleep (does 5pm count?).
Don’t go to bed unless you are sleepy (I could be there 24 hours a day)
If you don’t fall asleep after 20 minutes, get out of bed (but I’m sleeping!)
Establish a relaxing bedtime routine (I do this part well)
Use your bed only for sleep and sex (well, the sex part at least works)
Make your bedroom quiet and relaxing. Keep the room at a comfortable, cool temperature (no problem here)
Limit exposure to bright light in the evenings (no problem here either)
Turn off electronic devices at least 30 minutes before bedtime. (oops, big problem here!!!)
Don’t eat a large meal before bedtime. If you are hungry at night, eat a light, healthy snack. (I’m okay with this one)
Exercise regularly and maintain a healthy diet. (I do okay with this too)
Avoid consuming caffeine in the late afternoon or evening. (I sometimes mess up with chocolate)
Avoid consuming alcohol before bedtime. (I don’t drink)
Reduce your fluid intake before bedtime. (usually not a problem)
One thing I have been trying lately is listening to sleep meditation music. There are some really relaxing ones out there that work on the Delta Waves of the brain and you can also find good Apps for your phone. I have an iPhone and one app in particular that is receiving great reviews is CALM by Apple. The other is Spotify which has wonderful playlists of calming music already set up or you can create your own from the many tracks available. I love listening to sounds…the rain falling, trains in the distance, things like that, so I love that option with Spotify. YouTube also has many videos of sleep meditations and if you use a YouTube to MP3 converter, you can also download these to listen to on your phone, whether it’s an iPhone or Android.
Hopefully some of these suggestions will be helpful. I don’t want to be sleepless in any city, anymore. I have slept, it’s happened a few times…I’d just like it to be more:
Collapsed in exhaustion. Notice my glasses are still on.
There is an Opioid Crisis in North America and it’s affecting two factions of people – the ones who take and use opioids illegally and the ones who use and take opioids legally as prescribed by their doctors. I want to focus on the second group because we’re not being given our due in the news. First though, let’s look at some numbers.
*Every day, more than 115 people in the United States die after overdosing on opioids.1 The misuse of an addiction to opioids—including prescription pain relievers, heroin, and synthetic opioids such as fentanyl—is a serious national crisis that affects public health as well as social and economic welfare. The Centers for Disease Control and Prevention estimates that the total “economic burden” of prescription opioid misuse alone in the United States is $78.5 billion a year, including the costs of healthcare, lost productivity, addiction treatment, and criminal justice involvement.2
**Canada isn’t far behind. “This is a major public health crisis in Canada,” says Dr. Theresa Tam, Canada’s chief public health officer. “Tragically, in 2016, there were more than 2,800 apparent opioid-related deaths in Canada, which is greater than the number of Canadians who died at the height of the HIV epidemic in 1995.” New data from the Public Health Agency of Canada (PHAC) shows that from January to March 2017, there were at least 602 apparent opioid-related deaths across the country; it is expected that this count will rise as additional data becomes available.
Pressure is being put on physicians in both countries to stop prescribing opioid medications or to cut down on the number of prescriptions they write, and many are complying. So where does that leave us, the People with Chronic Pain (PwCP) who depend on opioid medication to manage their pain in order to have any semblance of quality of life?
Physicians and Pain Doctors are now more likely to offer Pain Management Programs and techniques in place of opioids. These programs use a combination of non-opioid medications such as over-the-counter or prescription ibuprofen (Motrin), acetaminophen (Tylenol), aspirin (Bayer) and steroids, plus various therapies, including:
Physical therapy – A physical therapist or physician who specializes in physical medicine and rehabilitation may be able to create an exercise program that helps you improve your ability to function and decreases your pain. Whirlpools, ultrasound and deep-muscle massages may also help.
Acupuncture – You may find relief from acupuncture, in which very thin needles are inserted at different places in your skin to interrupt pain signals.
Massage Therapy – can help to relax the muscles that may be causing you pain
Injections or nerve blocks – If you are having a muscle spasm or nerve pain, injections with local anaesthetics or other medications can help short-circuit your pain.
Biofeedback – where you learn to control involuntary functions such as your heart rate.
Surgery – When other treatments aren’t effective, surgery can be performed to correct abnormalities in your body that may be responsible for your pain.
Cognitive Behaviour Therapy (CBT) – can change the thoughts, emotions, and behaviours related to pain, improve coping strategies, and put the discomfort in a better context
Are these programs helpful? Do they work? Do they relieve pain? Well, from my own personal experience, the answer is no, they don’t take your pain away. They do give you the tools to manage your pain more effectively as long as you employ the tools on a daily basis, but when your entire body is wracked with a deep aching, burning sensation that NEVER GOES AWAY, it’s almost impossible to manage that. When my legs feel like bricks and my arms are burning like fire and I can’t move my shoulder to brush my hair and my knee is collapsing when I walk and my spine feels like it’s going to collapse any second from now from the intensity of the stabbing I feel…it’s hard to be motivated that today is going to be a good day.
Now, I have to be honest and admit that I am still taking opioid medication. I have been, for the last 10 years. I have weaned down my dosage, but I still take it. Right now, I take a Slow Release dosage of OxyNeo (Oxycodone) in a dosage of 30mg, 3 times a day. Each dose is to last me 8 hours. Does it work? Somewhat…it keeps my pain at a 4-5 on the pain scale which I can manage with other techniques. If I didn’t have the medication, I would be at a steady 8 on the scale, all the time. Now, what would happen if my Doctor decided to stop my drugs? I would be hard pressed to manage without them, especially after so many years of taking them. Am I an addict? No, I’m not and here’s why. When you have legitimate pain, it’s impossible to become addicted to a pain medication. It’s when you take a medication that you don’t need that you become addicted to it.
I want to share a conversation I had in a chat with a couple of friends who’ve allowed me to share their thoughts and first names. Read what happened to Lindsay and our replies:
What Lindsay said:
I just had a run in with a pharmacist yesterday. I suffer from interstitial cystitis, endometriosis, chronic ovarian cysts, degenerative disc disease, fibromyalgia and arthritis. Since January I’ve had 9 kidney infections, one or two a month. I have an appointment with an infectious disease specialist at the end of this month, and I have my normal team of Drs and specialists that I already see along with my pain management dr. Well every time I have a kidney infection it causes my IC to flare and my pain because so out of control that I end up in the ER, so my PM gives me extra pain meds to help me get through the infection. Well my normal pharmacy had a pharmacist who’s been snippy with me before and when I handed her the extra script, she blew up on me. She said pain meds don’t help with my kind of pain, it’s only a bandage treatment, I shouldn’t be allowed to take pain meds this long, my regular pain meds should be enough, I’ll OD, my dr is an idiot, I’m not really in that much pain and she wrote a bunch of notes on my account barring me from ever getting extra meds again, including for surgeries etc. I started crying, she used an aggressive tone and lectured me in front of a line of other patients and threatened not to fill my prescription, then did after slamming her hands down and furiously writing on my prescription paper then on my account about how I’m not allowed to do this anymore. I was so so embarrassed and now I’m terrified to have anymore prescriptions or anymore acute pain issues. I hate that this is my life now. I didn’t ask for this!
What I said:
It’s been said to me by my Doctor that it’s impossible to become an addict to opioids when you actually, truly need them. I don’t get high, and I function completely normally. I could be tested by the police and while the drug would show in my system, I wouldn’t show as impaired. It’s the people who abuse the drug and who take it in a manner it’s not meant to be taken in that ruin it for the rest of us. I would have reported your pharmacist to her association. That was uncalled for and completely unprofessional. She can NOT refuse you unless she refuses to serve you completely. Can you transfer to a different pharmacy for the future? Honestly, if she had done that to me, I would have raked her over the coals….no one, and I mean NO ONE talks to me like that. EVER. I live in Canada and we are facing our own Opioid Crisis here as well. The College of Physicians and Surgeons is cracking down on Doctors who over prescribe or who prescribe too high of a dosage of narcotics to patients. I have been on Oxycodone for almost 10 years now, going from a dose of Slow Release OxyNeo 90mg 3 times a day to 30mgs 3 times a day. plus other meds I take for Fibro, Osteoarthritis, D.I.S.H., Trigeminal Neuralgia, Bipolar Disorder, Diabetes Type 2 and Hypothyroidism, amongst other issues. Three of my drugs clash and shouldn’t be taken together, but I have no choice. I hope you’re able to find a pharmacy that treats you with respect and dignity just like you deserve. Before you give them your business, shop around and ask them what their policy is for opioid customers. Tell them of the experience you had and ask them how they treat that type of situation. Good luck to you and I wish you better, pain-free days ahead. oxoxo
what Angela said:
I fight this as well and also have issues with my body metabolizing my meds too quickly. The dosages i am on would probably put someone into an overdose but unless you know what i am on, you’d never know i was on anything. Trying to advocate for myself constantly is a huge struggle and mentally draining. The thing is, i am also a nurse and still trying to remain independent through the 9 surgeries ive had in the last 5 years alone. Not only is it a struggle to advocate for myself but i also advocate for my patients the best i can as well. I am constantly fearful that i am going to be cut off from my meds and end up in a pain crisis, in massive withdrawal and become completely unable to support myself. I am also a single mom, so losing my income is a big deal. I am so sick of taking heat because of people who abuse the system. Of every person i know who has chronic pain and take medication, none take them incorrectly, nor do they get high from them. Even if i do take more than usual, i just get sick so if my pain is out of control, i really have to weigh that consequence. I am now in dread because i have to see a new pain management PA next month and my surgeon is moving. Just this thought is really stressing me out.
These are the things we have to deal with as PwCP. It’s not just the doctors we fight with about our medications – it’s the pharmacists as well.
Yes, my friends, there IS a crisis regarding opioid medication and it’s affecting the people who need the drugs the most. The patients. The people with chronic pain. Us.
One Liner Wednesday comes from Linda G. Hill at her blog, and from this post: One Liner Wednesday
so, I thought I’d give it a go:
Cat Nap
there is always hope!
Are you grateful for your life? Are you grateful for the things you’ve been given? Are you grateful for Chronic Pain and Chronic Fatigue? What about your other Invisible Illnesses? For Fibromyalgia? I am, and let me explain why.
I have had my Invisible Illnesses for over half my life now, and they have been a predominant part of my life since 2004 when I went into a major flare that I’ve never recovered from. That was the year I had stomach surgery for severe Gastric Reflux disease – a procedure called a Nissen Fundoplication. The surgery itself was successful, but I suffered nerve damage in the sternum area from where an instrument being used was pressed too hard against a nerve for an extended period of time, causing it to be pinched for over an hour. This caused me excruciating pain that didn’t resolve for almost a year and had me addicted to morphine pills to the point that I was hallucinating. In fact, at one point, the general surgeon called in a Thoracic surgeon, who was going to crack open my sternum to try and fix whatever the problem was – a drastic solution indeed.
I’m grateful this didn’t happen and the Thoracic surgeon had the sense to suggest a drug called Gabapentin for nerve damage which is what he suspected was the problem, and he was right.
I spent almost a year in a hunched over position, trying to “contain” the pain, it was so bad. I ended up having to go for physical therapy and massage in order to loosen up my muscles to where I could stand in a straightened up position again.
I’m grateful for the therapists that helped me.
I’m grateful there are medical teams in place when we need emergency surgery, such as when a cyst I didn’t even know I had on my ovary burst, causing me horrid pain. It needed immediate removal and there was a team to do that. Just like there was a team to remove my gallbladder and my other ovary when it went rogue as well.
And I’m grateful for my three doctors who have worked with me and my overall health issues over the last five years, Dr Leong, Dr Winston and Dr Burnett, my orthopedic surgeon who did my hip replacement.
Okay, you say…it’s easy to be grateful to the people who help us, but how can you be grateful for having Chronic Pain and Fibromyalgia and all the other stuff. Well, I’ll tell you.
When you have Invisible Illness, you tend to miss out on a lot of life. You may have to give up your job or volunteer activities, your hobbies and family life. You end up losing a lot more than you seem to have left. But what having a Chronic illness does is force you to dig deep to FIND what you’re grateful for. I made a list:
Sunrises and sunsets
Quiet mornings after a good sleep
A perfect cup of coffee
A day where the kids get along and no one is fighting
A day where the cat or dog doesn’t barf all over the place
Feeling energetic enough to accomplish a few things on the “to do” list
Feeling rested
Feeling less pain than normal
Being able to go for a coffee date with a girlfriend or two
Having dinner with your family together instead of needing to lay down
Date night with your spouse
Watching a movie together instead of early to bed
Having a bath or shower
Having enough food on the table and money in the bank
Laughter
A sense of safety and security
A roof over your head
Feeling loved
Having a close friend you can confide in
Books to read and art to admire
Social media like Facebook and Pinterest
Ice cream or a favourite treat
Family and friends to share memories with
Vacations
I could go on and on…the point is, there is so much to be grateful for, but when you live with Chronic Pain and Chronic Fatigue and Invisible Illness, it’s easy to get stuck wallowing in the negatives, to the point you forget to stop and remember to be grateful. Take a moment now to list a few things that you’re grateful for and make it a habit each day to say thank you. An Attitude of Gratitude is easy to cultivate, but like a good garden, you need to tend to it every day.
Remember…
there is always hope!
Joy is an interesting concept. It can happen because of tiny little things or we experience it because of huge and delightful things. I’ve been tackling a lot of serious subjects lately, so today, I thought I’d talk about joy, and how being happy and thankful can be possible when you live with Chronic Pain and Invisible Illness.
I have a hummingbird feeder that I recently added to my backyard. Apparently, I also have a wasp nest nearby. Right after adding the hummingbird feeder, a swarm of wasps took it over, preventing these tiny birds from having a chance to use their new feeding station. I was mad. This was NOT why I had put the feeder out, so I started brainstorming ideas about how I was going to correct the situation. I went online and one of the ideas was to put out a food source for the wasps and then to move it away from the feeder a little bit each day until it was far enough that the birds would feel safe to eat again. That was all well and good, but it didn’t get rid of the wasps, it just relocated them further down my patio. I wasn’t sure where the nest was, and I wanted the wee pesties to go away completely.
Still, I put out a dish with a super concentrated nectar for them and sure enough, they started leaving the hummingbird feeder alone and going to their own dish. Some of them drowned but what mostly happened is that a bigger swarm of wasps showed up, now that they had a food source. Even more frustrated, I bought a wasp trap and hung it near the bird feeder, hoping to confuse the little buggers and trick them into dying. Oh yes…I can be very mean when I need to be! And yes, this too worked…but obviously the nest was nearby because even more wasps showed up!! So, where is the joy in all this? Well, I watched as the wasp trap did its job…many of the new swarm were attracted to the extra sweet nectar and flew into the trap, but then found themselves unable to get out again. I watched in joy as they struggled to figure out what to do, eventually getting tired and dropping to the bottom where they drowned in the treasure that had called to them in the first place. And my hummingbirds were able to enjoy the feeder that was meant for them in peace.
Not only that but Ray was able to find the nest and give it a good spray with wasp killer, so hopefully, we’ve eradicated them and won’t have to deal with their swarming any longer. Another cause for Joy.
The hummingbirds make me happy. Their energy and the buzz their wings make when they’re at the feeder brings a smile to my face every time. The colours they wear on their jewel-toned bodies flash in the sun, and each one brings a bright start to my day. In the same way, a good cup of coffee and a cuddle with my cat Dorie starts the morning off right, even if I haven’t had much sleep at all.
I think that often, people with Chronic Pain forget that it’s okay to feel joy. We’ve been so used to feeling the negative emotions that come with being in pain all the time that we forget there are positives in our lives as well. When you hurt, your focus is on the hurting. There is often desperation around pain because it’s never-ending. We can have a tendency to catastrophize it with phrases like “I’ll never get better” or “this is the worse pain I’ve ever had” yet when good things happen, we don’t do the same thing: “this is the happiest I’ve ever been” or “I’ve never been so happy”. It’s almost like we’re afraid to accept the joy in our lives for fear it’s going to go away and we’ll never experience it again. The thing is, we make our own joy, or we find our own joy…nobody does it for us. So, if you want joy…you have to look for it. Think about it for a minute…what are some things that might bring joy into your life? Here’s a list of 20 items that might get you started:
Watch a sunrise or sunset
Send someone you love snail mail
Volunteer
Get crafty
Bake something
Keep a journal
Take a walk
Do a good deed
Read a novel
Go to the museum
Sing
Take a class
Enjoy a power nap
Log off Facebook
Practice positive affirmations
Mentor someone
Plant a garden
Have a warm bath
Go to an art gallery
Give more compliments
Most of these ideas cost nothing but reap huge benefits in the joy department, and you deserve them! Not only that, but the more joy you bring into your life the more you fire up the endorphins that release the body’s natural painkillers, so you’re physically doing good to your body as well as mentally doing good to your body. That’s a 2 for 1 special you won’t find in any store!!
You are worth every joy possible. With everything your body goes through on a daily basis, it’s natural to feel beat up and unworthy of happiness. Those are your brain weasels talking. Brain weasels are the voices of depression that come with chronic pain and those weasels lie to you all the time.
They don’t want you to be happy so they’ll tell you all sorts of lies to try and convince you that you don’t deserve joy in your life, but THEY ARE WRONG. You have every right to be as happy and joyful as the next person. So take a chance on happiness EVERY chance you get and see if it doesn’t start your day off on a better note. And tell those brain weasels they can go the same way as the wasps!
I mostly write about Fibromyalgia, Chronic Pain, Chronic Fatigue and Invisible Illness, but I do occasionally deviate from these subjects to talk about other things. Today I wanted to share with you some of the crafty stuff I like to work on.
One of the first things I started on quite some time ago was this:
The colour is done in chalk and the leaves are from cut out paper. The lamb is a pin that I found in a box of jewelry. It’s not finished yet, as I’m not sure what I want to do with the rest of it. Maybe something to break up the horizon, or some tiny flowers. I just feel like it’s incomplete somehow so I’ve put it aside until I figure out what to do next. If you have any ideas, leave them in the comments for me.
Other projects I’ve been working on included this mixed piece:
It’s a wall hanging with beads and buttons and 3D butterflies and moss grass etc. Mostly I did it to play around with texture. It hangs in the Craft Room/Sewing Room and while it’s pretty simplistic, it was a start.
I’ve also done some very basic flower arranging:
The thing that I seem to be into the most right now is beading. I have been creating hanging beads for outside, including these:
They hang on the beam along the sidewalk by our parking space and serve no purpose except to look pretty. I’m also creating hanging beads that will go in front of the slats of our fence on our back patio, for the same reason:
I’ve put cardboard behind so you can actually see the beads, but they would normally just hang through the slats
I think when it’s done it will look really pretty. I’m going to put a bell on each one so it acts like a wind chime as well. The bell will go where the middle slat is. The ones I showed you are hanging in our front patio and I might make more for there as well. Depend on how many beads I have and how tired I get of stringing them! LOL!
I’m not really very crafty. I have to follow instructions pretty closely in order to do things, but this is pretty easy stuff. I’m hoping the shiny beads will attract more hummingbirds as well…I get a few to my feeder and we have tons of birds around here, so we’ll see. Maybe I’ll scare them all away!!
If you are a crafter, what type of things do you like to do? Leave me a comment to share your favourites and maybe I’ll learn something new!
There is always hope!
I recently had the opportunity to try a product called AloeMD for my Fibromyalgia pain after hearing about it from another blogger. I would like to tell you about the product and give you a review on my experience with using it. I am not being compensated financially for this review, but I did receive a free 3-Day supply of the product to use in order to write the review. These are my own comments and do not reflect the opinions of anyone else.
What Is AloeMD? This is the product information taken from the AloeMD website:
AloeMD is a patented true aloe-based, tissue compatible formulation composed of natural anti-inflammatory botanicals, integrated with smart delivery technology that transports potent actives where needed most – providing intense relief, supporting cell regeneration and advancing continual repair.
Reduces pain quickly and effectively
Defends and strengthens the protective barrier around the cells
Optimizes body’s own ability to reinforce health
Instant and long-term benefits
Soothes chronic inflammation
Absorbs and penetrates where needed most
Promotes long-term healthy cellular function
Improves quality of life
I decided to use this on my right shoulder which has been causing me pain for quite some time as well as some limits in range of motion. I haven’t been able to lift my arm all the way to the top of my head, and I can’t move it to behind my back.
The 7ml sample package contains enough cream for approximately 3 days, the test period. To use, you simply massage a dime size amount of the cream into the affected area until it’s absorbed into the skin. I liked the fact that the cream didn’t feel greasy at all, and there was no unpleasant odor. It quickly disappeared into the shoulder area and within just a few minutes, maybe 7 or 8 minutes total, my shoulder felt better – less painful and easier to move. As time went on, that feeling of relief improved to the point that I was actually able to lift my arm to almost a full overhead position. I was absolutely amazed!!! I didn’t think I’d be able to do that! Unfortunately, I was NOT able to move the arm behind my back at all, but I thought perhaps as I keep using AloeMD, it will loosen up.
I used the product consistently 3-4 times a day over the three days, but was unable to get any better results than what I achieved on that first day. I wasn’t able to get my arm any further overhead and I never was able to move the arm behind my back. My pain definitely did feel less but without gaining any extra movement, I was a bit disappointed overall.
Deborah, who provided me with the sample, had generously sent me extras because I have so many areas of pain. I also tried the AloeMD on my left Achilles Tendon which has been exquisitely tender for months now. Unfortunately, the AloeMD didn’t work on this area at all, and I didn’t receive any pain relief here.
So, my overall results were good, but not excellent. Would I recommend the product? Yes, I would. I think that there are many people who would benefit greatly from using AloeMD. I just didn’t happen to be one of them, and there are some people like me who may have too many things wrong in their bodies for AloeMD to be able to handle.
Don’t let my results stop you though. I strongly recommend you at least try it, because you have nothing at all to lose. The sample is free and the pain relief I did get was amazing, so that’s worth it for anyone!!Follow these instructions to get your free sample:
Click on the PainSmarts tab at the top of the page
Scroll down to find the link that says “Get your free sample”
To request your Free Sample, please use Control Number R1776
If you’d like to buy AloeMD and also check out the many other exciting products that AloeVeritas carries,visit the store. You can also join the facebook group4ever Aloe to learn more about the product, see video testimonials from people who have tried it and learn about the science behind the pain relief. It’s Worth It!!!
Wow!
I’ve just had a new piece of writing published on the Pain News Network as a guest columnist. I wanted to write about how we grieve when we lose so much of our lives to a diagnosis of Fibromyalgia, Osteoarthritis, MS, Ehler-Danlos, Lupus and other Invisible Illnesses.
Now, I saw information about the Pain News Network on the blog of someone I follow. I looked them up and saw that they accept articles from guest writers. I contacted the Editor to see what the requirements were and he told me that basically anything to do with real life and pain, as long as it hadn’t been previously published. So I sat down, thought for a few minutes and literally banged this out. He thought it was good enough and voíla, it was done!
Here is the link, and I would love your thoughts about it in the comments below. I guess I’ll have to update my “I’ve been published” section…this is my first publication outside of The Mighty!!!
I’m so excited and I’m really damn proud of myself!
https://www.painnewsnetwork.org/stories/2018/8/8/grieving-a-former-life
There is always hope!
I’m tackling a tough topic again today – intimacy when you live with Chronic Pain. If you remember the Cheap Trick song, it’s been on my mind lately:
I want you to want me.
I need you to need me.
I’d love you to love me.
I’m beggin’ you to beg me.
I want you to want me.
I need you to need me.
I’d love you to love me.
How do you enjoy an active and healthy love life when you’re in pain all the time. How do you appease your partner, who may not understand what it’s like to be in pain 24/7. Even when you’ve explained it a million different ways, when it comes to talking about sex, and how painful it can be, it’s not an easy conversation, no matter how long you’ve been a couple. And your sexual orientation makes no difference either.
Intimacy is the fuel that keeps a good relationship running. It encompasses so much more than just sex. Think about the different ways it’s defined in the Thesaurus:
the state of being intimate.
a close, familiar and unusually affectionate or loving personal relationship with another person or group.
an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
an amorously familiar act; liberty.
sexual intercourse.
Intimacy is also about being close emotionally. When was the last time you went on a date? When was the last time you actually sat and talked to each other ABOUT each other? Not about work or the kids, but about the two of you and how you’re doing. What’s new, what’s real, what you love about each other? When was the last time you looked into each other’s eyes and said “I love you” and really meant it?
If you haven’t dated for a while, maybe it’s time you did. Here are 25 easy date ideas that might get you started in the right direction:
Go to a community play,
Do an inside or outside picnic
Work out together
Go roller skating or ice-skating
Movie marathon with ice cream sundaes
Play hide and seek in a cornfield (or the woods)
Go on a walk around your neighbourhood in the evening
Go to estate sales together
Make a romantic dinner at home
Build something together
Go bowling
Go hiking!
Find the best happy hours in town and make the appetizers your meal
Have friends over and play board games
Go to an antique store and talk about the past lives of old objects
Get some thrift store tennis rackets and go to your city’s free courts
Go to the neighbourhood pool
Fly kites!
Test drive an expensive car
Go on a tour beer, food, etc.
Find out what tours businesses in your city offer and try one out.
Go thrifting or garage sale-ing together
Do a breakfast date
Find a free (or very cheap) class and take it together
Go to the animal shelter and pet the animals
So once you’ve reconnected and you’re ready for sex again, the Mayo Clinic offers these suggestions when you have a partner who lives with Chronic Pain*
Sexual intercourse is just one way to satisfy your need for human closeness. Intimacy can be expressed in many different ways.
Touch. Exploring your partner’s body through touch is an exciting way to express your sexual feelings. This can include holding hands, cuddling, fondling, stroking, massaging and kissing. Touch in any form increases feelings of intimacy.
Self-stimulation. Masturbation is a normal and healthy way to fulfil your sexual needs. One partner may use masturbation during mutual sexual activity if the other partner is unable to be very active.
Oral sex. It can be an alternative or supplement to traditional intercourse.
Different positions. Lie side by side, kneel or sit. Look in your library or bookstore for a guide that describes and illustrates different ways to have intercourse. If you’re embarrassed to get this kind of book locally, try an online book retailer.
Vibrators and lubricants. A vibrator can add pleasure without physical exertion. If lack of natural lubrication is a problem, over-the-counter lubricants can prevent pain from vaginal dryness.
The key factors to intimacy are trust, respect and honesty. You need to be able to trust your partner won’t push you into something you’re not physically able to do and will respect your limits. There needs to be honesty between the two of you and with yourselves as well. Don’t use your Chronic Pain as an excuse to get out of sex if it really isn’t a problem…that’s not fair to your partner. If you’re avoiding sex for another reason, then be honest. If you’re mad at your partner for something they’ve done, then say so. Tell them what and why and talk it out.
Don’t use your health to avoid other issues, because you’re simply breaking the trust and respect factors when you do that. You already have enough physical pain in your life – don’t add mental pain as well. Intimacy is too valuable a commodity to just throw away. Keep working on it and before you know it, you’ll be building and rebuilding the relationship of your dreams. And that’s no Cheap Trick!
There is always hope
Welcome!
I’m taking part in a new thing, from the blog of author Linda G. Hill. Every Friday, she provides a word to get Bloggers writing, and I found out about it from my friend and fellow blogger Amelia at youcanalwaysstartnow .
Today’s word is “call“. The idea behind this stream of consciousness writing is that you write without thinking about a subject using whatever word or phrase is given and you can only edit for spelling errors. So, here goes.
After posting about One Being the Loneliest Number, I had to admit to myself that I have been very lonely lately. I don’t have many friends on the Island and those that I do have are busy people and not easily accessible when it comes to getting together. This week is especially bad as Ray is away on a bike trip with the guys and won’t be back until next week on either Tuesday or Wednesday. That’s only 5 days but it’s 5 long days for me. I miss him even though we don’t do a lot together when he is here because he goes to bed so early because of his long days at work.
Anyways, so I was feeling particularly lonely tonight so I went to my favourite online Facebook group and I posted about it. This group is a group of fans of Jenny Lawson’s, the author of Let’s Pretend This Never Happened and Furiously Happy, as well as her book/colouring book You Are Here. And what I posted was my address and that I would love postcards and notes and cards to cheer me up. And people responded!!! I have a number of online friends from this group whom I dearly love and they were all so sweet…they’ll be writing to me soon. And other people who I don’t know well in the group said the same thing!! Plus I got three wonderful emails after leaving my email address for one person who is on bed-rest in the hospital awaiting the birth of her son, and those made me cry, and I just feel so loved and a whole lot less lonely in this big ole world!!
and all it took was for me to put a call out into the world to say I’m lonely.
If you’d like to take part in Stream of Consciousness Saturday, here are the rules from Linda Hill (all references to “I” belong to her)
1. Your post must be stream of consciousness writing, meaning no editing (typos can be fixed), and minimal planning on what you’re going to write.
2. Your post can be as long or as short as you want it to be. One sentence – one thousand words. Fact, fiction, poetry – it doesn’t matter. Just let the words carry you along until you’re ready to stop.
3. I will post the prompt here on my blog every Friday, along with a reminder for you to join in. The prompt will be one random thing, but it will not be a subject. For instance, I will not say “Write about dogs”; the prompt will be more like, “Make your first sentence a question,” “Begin with the word ‘The,’” or will simply be a single word to get you started.
4. Ping back! It’s important, so that I and other people can come and read your post! For example, in your post you can write “This post is part of SoCS:” and then copy and paste the URL found in your address bar at the top of this post into yours. Your link will show up in my comments for everyone to see. The most recent pingbacks will be found at the top. NOTE: Pingbacks only work from WordPress sites. If you’re self-hosted or are participating from another host, such as Blogger, please leave a link to your post in the comments below.
5. Read at least one other person’s blog who has linked back their post. Even better, read all of them! If you’re the first person to link back, you can check back later or go to the previous week by following my category, “Stream of Consciousness Saturday,” which you’ll find below the “Like” button on my post.
6. Copy and paste the rules (if you’d like to) in your post. The more people who join in, the more new bloggers you’ll meet and the bigger your community will get!
7. As a suggestion, tag your post “SoCS” and/or “#SoCS” for more exposure and more views.
8. Have fun!
There is always hope!
Living with Chronic pain is lonely.
I’ve been very lucky in my life with chronic pain in that I have a wonderful support team. My husband is amazing – he truly gets it and understands what I’m experiencing as he’s starting having some chronic pain issues of his own. My kids are terrific too and are my biggest cheerleaders. I’ve been blessed with amazing friends who are sympathetic to what I go through on a daily basis, and who understand when I need to cancel plans at the last minute because of my health.
But I’m lonely.
Chronic pain causes you to isolate yourself because you hurt so much all the time, you just don’t want to be around people, yet you don’t want to be alone either. You never know when a flare is going to happen, so you tend to not make plans because you don’t want to be that flake who is constantly cancelling things. I’d rather try and make spontaneous plans but it never feels spontaneous to me…it actually feels desperate. And nine times out of ten, when I do make plans, I end up cancelling them because I wake up on the day of the big event feeling horrid. It’s generally because I’m exhausted as well as being in pain, but no amount of napping is going to make me feel well enough to go out. Of course, if I didn’t have plans that day, I’d have slept just fine the night before. It seems that I’m busy sleep stressing about the date, knowing I’m going to wake up feeling crappy, and then sure enough because I’m sleep stressing…I wake up feeling crappy! And even though I have great friends, I’m sure they must get tired of me flaking off all the time too.
It’s even harder when the people in your life don’t “get it”. This quote comes from Stephanie Schwerin Uplook from a Facebook Fibro Group I belong to and is used with her permission.
This is what she had to say: Fibro sucks…having family members that don’t get it and don’t listen to one word you say when you try to explain how and what you feel. It’s not cancer, it’s not something they know anything about, it’s not terminal, it’s not that bad. You look fine…I’m really tired of being brushed off like it’s not that big of a deal. They don’t know how bad it can feel, the physical and mental toll it takes on me. No clue, no sense in trying to explain it. This last flare lasted a week and it was bad yesterday and today I’m tired and sore, I feel like my body is trying to recover from the flare, depression has kicked in. I’m wondering if this is how the rest of my life will be. You know what’s the most aggravating?? I’ve changed so much of my lifestyle to get rid of this crap and I’ve seen no change. I swim every day, I have weights for the pool, I watch what I eat, I’ve researched and researched, I walk most days, I take magnesium supplements and I’ve seen a Rheumatologist at the Mayo Clinic. Those are just a few of the things…and for everything I’ve done, it seems to be getting worse with every flare. That’s depressing. I’m 49 yrs old and to watch me get out of a sitting position after only 5 mins of sitting, you would think you were watching a 90 yr old. My husband can’t believe how quick my body locks up, even after I’ve been in the pool for an hour or how I can’t turn over in bed once I lay down. Getting up out of bed is another struggle…I’m so tired of this crap. I really don’t talk much about how and what I feel anymore with anyone. I get tired of hearing myself complain about how I feel, I’m sure they do too. I mostly have a good positive attitude and can deal with this but today, I’m tired, I’m tired of all of this.
Wow…that’s painful to read. But it happens to most of us and if you’re reading this and you have Fibro or Chronic Pain of some type, you’re probably nodding your head and recalling when this has happened to you.
Lately, most of my mornings have started off with a good cry…I’m 56 and it just hit me recently that this is NEVER GOING TO GO AWAY. No matter what I do, or how good I treat my body, this Fibro is never going to go away and in fact, will probably get worse as time goes by.
That’s a thought worth getting depressed about. How does one stay positive when that’s what you have to look forward to…nothing but more days of pain and exhaustion and the people you love not understanding you, so you continue to feel guilty about having a disease like this, like it’s your fault somehow.
All I can say for sure is that it’s NOT your fault, and you have to take as good of care of your body as possible and not let the words of others hurt you. They mean well, but they don’t understand what it’s like for us, because there is no way to make them understand. No description we give them of Fibro can possibly come close to actually living it. Just do your best to keep your spirits up, try not to blame them and do what you can to stay as healthy as possible. Find as many comfort measures as you can on the days you feel the worst and make a list of all the things that are good in your life so you can refer back to it on your really bad days. Those are the things I do. I also try to reach out to help others as it takes me out of my head and puts me into “action mode”.
So what do you do when it comes to loneliness? What do you do when you need help? My dear friend Brenda Teichroeb Heywood suggested this particular blog post today. She is a single mom of 7 children ranging in age from adult to 3 and is going through a very difficult situation right now plus getting ready to move. She had this to say: “I have always been the type of person who did not want to barge in during a sensitive time for someone. In their pain, I did not want to bulldoze my way in and then expect them to be grateful for my “help”. Yet, here I am, desperate for help in this very drowning experience and so many are sitting back and waiting for me to tell them what I want. I am just so overwhelmed, it would be better for someone to just jump in. I wonder if it would be a helpful post to write to those who live with or know people to struggle with chronic pain. Is it better to jump in and help the person? Is it better to respect space and wait?”
I responded back to her: “Sometimes the people able to help just don’t know how to. Personally, I think people stand back waiting to be asked because they don’t want to interfere with or disrupt a person’s life. They don’t want to intrude. It’s like saying “call me if you need anything”. They’re willing to help, but the onus is on you to reach out for it.”
And she replied: “It’s hard. To be so exhausted and then still do the asking. One friend has offered over and over that she’ll help me in any way. I’ve asked multiple times for help with packing and sorting and she has yet to show up. Sigh. This is not for forever, but I’m worn thin. And I think the little girl in me just wants to be rescued. Maybe what we need from others is a person by person thing or season by season.”
Isn’t that how we all feel…like we want to be rescued? Yet the only person who can truly rescue us from loneliness is ourselves. If no one knows how we’re feeling, we can’t blame them. And if no one “gets” what we’re going through, we either have to keep finding ways to explain it or realize that perhaps they just don’t want to get it. Maybe they don’t believe us, or maybe they’re too overwhelmed with what we experience. We frighten them with the intensity of our pain and fatigue and finality of this disease. They know it’s never going to end just as much as we do, but they don’t know what to do or say, so they do and say nothing. Or if they say something, it’s a joke. Or a nasty comment. Defence mechanisms come in all shapes and forms, so we can’t take it personally or we’ll go mad.
Loneliness goes hand in hand with Chronic Pain and Chronic Fatigue and all Invisible Illnesses. It’s up to us to learn how we want to manage it. Do we want to reach out to others or have them reach out to us? We need to communicate that to the people we love, so they know what the expectations are. You’d be surprised how many of your friends may be sitting there, waiting for you to call to say you’d love to get together with them – and they’ve just been waiting to hear from you to give the go ahead.
One is the loneliest number but it doesn’t have to be. Pick up the phone, send an email, say hi on Facebook…do whatever is easiest, but make a connection soon. Turn your one into two.
There is always hope.
August Link Ups for A Chronic Voice
I’m taking part in my very first Link Ups on the blog A Chronic Voice. Sheryl is the Authoress of the page and she hosts these online parties every month, providing 5 word prompts to help get us writing. We’re allowed to submit one post per month utilizing these prompts, so I thought I’d give it a go.
Prompts for the Month
Figuring
Completing
Boring
Cuddling
Chatting
1.Figuring: I spend a lot of time figuring out what I want to share with my readers when I’m writing up new blog posts. A lot of my posts have to do with my own personal health, but sometimes I switch things up and share about other things, such as our pets that bring us such comfort when we’re feeling ill, or about body image or feeling invisible. But I often wonder if that’s what my readers want, or if they want more generalized posts about Fibro and Invisible Illnesses, so I second guess myself a lot. I’m a fairly new blogger, having only seriously been at it for the last 3 months now. I think my best bet is to mix it up and include a variety of posts and see what type of comments and traffic I get and just decide from there if I’m doing the right thing.
2. Completing: When I’m in pain, I tend to start a lot of different projects to keep my mind busy, but I’m not always good about completing them. I have half done crafts all over the place – artwork I’ve started and never finished, a multi-media piece that I don’t know what to do with, beads that I want to make something with, polymer clay that I want to create with, crochet needles and yarn that I bought to teach myself how to make a scarf and a needlepoint kit of a cow, because I love cows. I need to learn how to focus on one thing at a time, complete that particular project and then move on to something new instead of having 6 different things going and none of them being worked on.
3. Boring: Being housebound because of Chronic Illness can be awfully boring sometimes. You wouldn’t think so with all the things I have that I could be doing, like all the projects I just mentioned. I could also be watching Netflix or reading a book or making a coffee date, but here’s the thing…most of the time, I hurt too much to consider doing much of anything at all. I try not to complain to anyone, least of all my husband, but most days, I start off by having a wee cry. The rest of the day is basically one long blur of bore with each day the same as the one before. I’m always up super early because I don’t sleep well, I spend a lot of time on Facebook, I work on my blog, I play a few Facebook games, I spend time with our cat Dorie, and I wait for the mail. Hubby comes home, we have dinner, he goes to bed fairly early, I do more on Facebook or my blog and finally, around midnight, I try going to sleep, just to wake up at 4am to start all over again. Boring!
4. Cuddling: I am 5’2″ tall and my husband Ray is 6’5″ tall. You wouldn’t think so, but it makes for perfect cuddling! When I hug him, my ear is right at the level of his heart and I can hear how his heartbeat quickens when we connect like that. Laying together, we fit like two perfect pieces of a jigsaw puzzle, each body part meshing with the other. We spoon together, I snuggle up to him – no matter how we cuddle together, it’s always a perfect fit.
5. Chatting: I love chatting online with people and the one thing I can honestly say about myself is that I love to help other people. I stay up to date on current affairs, but mostly, I’m a counsellor. I like to listen to people and it seems they naturally like to share their problems with me. I’ve lived an interesting life and have a lot of common sense, so I enjoy offering them good old fashioned advice like Ann Landers. That’s why I was delighted to find websites like Quora and The Mighty – they’re perfect for me. I’m able to share my knowledge and wisdom with others while learning at the same time.
So, there we have it, my first attempt at the Link Up Challenge! I hope you all enjoy the read and decide to follow me for more of my posts. Just click the little “follow me” button on the right side of the page and voila! you’re done! You’ll get an email every time I post something new.
Thanks for your ongoing support. I blog to share my thoughts, to educate the public on Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness and to give from the heart. Remember…
There is always hope
I really love The Mighty. It’s an empowering website for people with Chronic Illness to share and learn and they encourage input from people like me, who live with Invisible Illnesses. This is from their website:
The Mighty is a digital health community created to empower and connect people facing health challenges and disabilities.
We have over 1 million registered users and are adding a new one every 20 seconds.
Our stories and videos are viewed and shared more than 90 million times a month.
But those are just stats. This experience from a community member is what we’re really after:
“How is it that I read an essay on The Mighty and it is the only place in the world where I feel truly understood? Time and time again you speak to me through your contributors. I read this headline and it could have come from my very lips…I wanted to say thank you – words can never express how truly grateful I am to the author for sharing her story, for all Mighty contributors, and to The Mighty itself. You have changed my life. I have made a close friend who lives many miles away because of our shared pain. I gain insight every day and I finally, finally do not feel so alone in this world. Thank you. Bless you!”
I’ve had one story published already and now they’ve gone ahead and published a second article of mine. They took my post Some Body To Love and condensed it so it can be shared with the world. I’d love it if you’d check it out here!!
There is always hope!
Welcome back!
Did you know that as a Patient, you have a Bill of Rights, afforded to you under your Government? It’s true! There are certain obligations your government has committed to meeting when it comes to your health care and I decided it was a good time to share those with you, as well as to write-up a set of Rights that we have as Patients for our Doctors, Nurses and other Medical Professionals. Are you ready?
Canadian Patients’ Bill of Rights*:
You have the right to be fully informed about one’s medical condition;
You have the right to be advised of the available treatment options;
You have the right to be involved in treatment decisions;
You have the right to information on the qualifications and experience of the health professionals from whom services are received;
You have the right to receive considerate, compassionate and respectful public health services;
You have the right to confidential communications with health professionals;
You have the right to have access to and copies of personal health records and to have them corrected, if necessary;
You have the right to have health records kept confidential and not used for any purpose other than public health services without written consent;
You have the right to designate a person to exercise rights on the patient’s behalf if the patient is not able to do so because of a physical or mental incapacity; and
You have the right to be informed of all rights and responsibilities under the bill and under other laws of Canada or a province with respect to public health services.
American Patients’ Bill of Rights**:
You have the right to receive accurate and easily understood information about your health plan, health care professionals, and health care facilities. If you speak another language, have a physical or mental disability, or just don’t understand something, assistance will be provided so you can make informed health care decisions.
You have the right to a choice of health care providers that is sufficient to provide you with access to appropriate high-quality health care.
If you have severe pain, an injury, or sudden illness that convinces you that your health is in serious jeopardy, you have the right to receive screening and stabilization emergency services whenever and wherever needed, without prior authorization or financial penalty.
You have the right to know all your treatment options and to participate in decisions about your care. Parents, guardians, family members, or other individuals that you designate can represent you if you cannot make your own decisions.
You have a right to considerate, respectful and non-discriminatory care from your doctors, health plan representatives, and other health care providers.
You have the right to talk in confidence with health care providers and to have your health care information protected. You also have the right to review and copy your own medical record and request that your physician amend your record if it is not accurate, relevant, or complete.
You have the right to a fair, fast, and objective review of any compliant you have against your health plan, doctors, hospitals or other health care personnel. This includes complaints about waiting times, operating hours, the conduct of health care personnel, and the adequacy of health care facilities.
I’ve not done the Rights for other countries as most of my traffic comes from North America, but I’m sure a simple Google search using your country and “Patient Bill of Rights” would turn up something similar. I think this is good information for all of us to have and it’s all very reasonable.
Now the list for us as Patients:
You have the obligation to treat your doctor and other medical personnel with respect.
Be organized when you go to see your doctor – know the questions you need to ask and understand your doctor is limited to one or two concerns at a time. If you have more than that to talk about, book a double appointment. Don’t be an “oh, by the way” Patient.
If you need refills of your prescriptions, let the office know when you’re making your appointment. This way, they can schedule that into the time you spend with the Doctor.
Bring along a family member or trusted friend to help translate for you if English is not your first language. Don’t let translation issues cause your appointment to run overtime. The same goes for the hearing impaired – bring a sign language interpreter with you if needed.
Find out what the policy is for missed or cancelled appointments with your doctor. Most cancellations given within 24 hours are fine, but if you need to cancel with short notice, you may have to pay for the full cost of the appointment. Every office varies, so know in advance what your obligations are.
Be honest. Tell your doctor if you’re using recreational drugs – it can make a difference in regards to the prescriptions they need to write or tests they need to run.
Speak up if you don’t understand something the doctor says. You have a right to clear and concise information so if you’re not sure of what the doctor is saying, ask for clarification. There’s no sense going home and then having to call the doctor’s office to ask what he meant. Your time in the office is your chance to have everything explained properly. If you feel your doctor is being dismissive of your symptoms, you have the right to ask for a second opinion.
What do you think of the Patient list? Is there anything you think is wrong? Is there anything missing that should be added? Tell me in the comments below.
Remember, we have as much of an obligation to be good Patients as our Doctors and Nurses et al do to be good practitioners of medicine. It’s a two-way street and only by working together will we be able to form a Patient Centred Care Team where those practitioners are working with us in partnership for our best health.
There is always hope.
Oh, today’s post is a goody!!!
Today, I’m talking about creature comforts…and by that, I mean the pets that bring us comfort when we’re in pain, or just needing a little extra loving. This is a guest post and I’m going to be introducing you to several of my Internet friends and their furry companions.
Lets start with Catherine Taylor and her Bichon Chloe. Catherine shared this with me: Bichons in general are very loyal and Chloe and I bonded from the start. It was like she imprinted on me … she was my shadow. When she was a pup, we had her outside one day, playing in the girl’s sandbox/play centre. It had a small slide and the girls put her at the top of it and ‘encouraged’ her to slide down it. Chloe was having nothing to do with it. I went to the bottom of the slide, crouched down and called to her. She turned around and saw me and tentatively made her way to the top, looked around once and then slid down to my waiting arms. This dog trusted me 100%. I love animals and feel privileged when an animal trusts me. I believed this dog would risk her life for me, if she had to. We were friends for life.
Chloe comfy in the chair
When I developed fibromyalgia, she stayed by my side as I spent more time in bed resting. She could have stayed near the action (and food) with other members of the family downstairs, but she became a fixture, literally, at my feet and often lying over them. It was like having a weighted therapy blanket (didn’t know about those back then). She wasn’t too heavy, just the perfect amount of pressure to make me feel snug and my feet warm, which are usually cold. She’d stay for the duration while I slept. Wherever I was, she was beside me.
Chloe laying on Mommy’s legs in bed!
As anyone can tell you, it’s comforting and soothing to have the warmth and devotion of another being close by, one that doesn’t require anything from you. Studies have shown that blood pressure and heart rate decrease when petting an animal. Chloe passed away last year and I miss having her by my side.
What a sweetheart!!!
Our next guest is Elaine Zena Feather and her precious rescue baby Felix Felix is my gorgeous rescue fur baby. He’s been with me almost a year and a half and he was barely more than a kitten when arrived. My granddaughter named him Felix which is also special. We’re not sure if he had been abandoned but he was definitely very nervous. He was happy to come to me straight away and have cuddles but he kept finding little hidey holes when we first got home (including diving into my drawer under the bed and he would not come out lol. My son had to remove the drawer and coax him out. Before long he made himself right at home, stretching his long, furry body out on the carpet.
He is such a loving boy and will lie right next to me wherever I am, snuggling up and wanting lots of cuddles. He will lie on my lap and turn himself over so he’s lying in my arms. Then he’ll put his paws up to my face for me to kiss them. I cannot imagine my life without him. He follows me round like a dog and comes running when I call. He’s very vocal and “chats” away to me. He really is a comfort and is loved by all my family. He is also very good with my grandchildren especially my grandson who was totally besotted with him. He has beautifully long fur and is happy to be brushed and will even roll over for me to do both sides lol.
Felix showing off his luxurious fur
His one “downfall” is he keeps bringing me “presents” which I do my best to rescue and then release back into the wild. Unfortunately I have ended up being bitten a few times by rescued mice and boy does it hurt. I just sometimes forget because I just want to try to pick them up before they disappear somewhere in my house that I won’t be able to find them. I can’t really blame Felix though because it’s what cats do and we have amazing open fields at the back of us which is a great hunting ground. They say having an animal reduces stress and stroking them is very good to reduce blood pressure but also to keep you alive longer. I totally believe that’s true cos having my snuggles with Felix is wonderful and makes me forgive him anything……..even him waking me up at 4am to go out lol xxx
Elaine and Felix cuddling each other
I love how furry Felix is!!
Our next guest is Julie Villefana and her Old English Sheepdog Don Pedro I have been living and coping with having Fibromyalgia as well as Chronic Fatigue Syndrome for many years. At the beginning I slept a lot, as well as cried and generally felt very unhappy. My mum lived with us, so I was busy hanging out with her. She basically got me out and about as little as I did. Then about 10 years ago my mum had a stroke and was first hospitalized and then placed in a Nursing Home. I was devastated. I had lost my only friend who really understood, or at least tried to understand my new-found life. Even though I am happily married, my hubby is away a lot. So, about 8 yrs ago we decided to get an Old English Sheepdog. We named him Don Pedro and he was 8 weeks old when we brought him home.
8 weeks old
He was so small that he fit on my mum’s tray on her wheelchair! He forced me to not only have to take him out to do his business and general exercise, but also to learn to smile again. He brought and still does, bring such joy to the world! He attracts attention wherever we are. Many stop to ask questions about him, to which I have to reply, naturally. He made me happy again. Sometimes I feel that I have to dress the part to just take him outside to be seen by the world. Plus, he is such a character and certainly has a personality of his own.
Playing with his girlfriend
If it weren’t for him my life would be very much duller. He seems to have adopted my lifestyle in that he rests when I do, which is a lot. Plus he seems to sense when I am at my worse and snuggles beside me on our bed. (We actually had to get a bigger bed as he tends to jump in ours and slowly push us to the edges so that he can stretch out)! I post a lot of pictures of our Don Pedro on Facebook and Instagram, etc, because he is so photogenic and adorable to us at least.
We have been on the front page of the news twice, including even winning a Lookalike Competition! And now that we have recently moved to Victoria, he is constantly being photographed by the massive array of tourists. Yes I realize that his breed don’t live forever, and we hope that he will be with us for many more years of sheer joy, we know that he will leave us one day, where I will have to carry on as best I can, but for now I will enjoy everything that he has to offer. I thoroughly recommend an OES for anyone housebound and in constant pain as am I.
Julie and Don Pedro enjoying the snow
I can’t wait to meet Don Pedro as Julie and I are friends in real life and she just moved to my town of Victoria, BC!
And finally, there’s my pet, Dorie. What can I say about my sweet kitty? We’ve had her for 9 years now, since she was a kitten and she is definitely MY cat.
Dorie at 10 weeks old
She plays with Ray but she cuddles with me and I’m the one she curls up to at night when it’s bedtime. She sleeps tucked right up beside my tummy, as tight as she can and only moves when I need to get up to pee. She waits for me to come back and get comfy and then *boom* she’s right back in there again!
She seems to instinctively know when I’m having a bad day too. She loves to come curl up in my lap on those days, offering me comfort. On other days, when I’m blogging or otherwise occupied on the computer, she’ll stay close enough to wait to an opportunity to sneak onto my lap whenever she can!
Just waiting for her moment!
Dorie has two special toys that she considers her babies – a blue crocheted string and a small stuffed bunny. She carries Bunny and String around the house, chirping at them and leaving them in the strangest places. We’ve found them in the food bowl before, and I once found Bunny in the recycling bin and the bathtub! Our rule is that we never move them unless absolutely necessary.
Bunny and String
Here I’d only set my motorcycle helmet down for a short while but apparently it was a good home for both toys! Dorie makes me laugh with her antics and I think that’s one of the best things a pet can do for you when you live with chronic pain – laugh!
Do you have a pet that helps you feel better? Tell me about it in the comments below and if you’d like to be featured in a post like this in the future, send me your information in the Contact Me form and I’ll be in touch!
Thanks for reading!
There is always hope!
The Mighty has published my post about Being Invisible! They even fixed it up and made it better!
Read it here if you missed it the first time: My Second Publication
remember…there is always hope!
I love my body! Despite the fact it’s a piece of crap on the inside and has been for a very long time…I still love it!
It’s not a model’s body, not by any stretch of the imagination, but my husband still finds it attractive after 24 years together. He took this photo back in 2011 when we went on our first cruise and when I asked him if he could find it (because I wanted to show it to our daughter to prove I looked good in a two-piece back then), he looked at me almost in disbelief and said “of course I can find it”. He knew exactly where it was because it’s a favourite of his.
I was 49 when this photo was taken and I’m 56 now. I don’t look quite the same as back then but I’m working on it. I’ve had a hip replacement since this was taken plus another surgery, as well as many years of increased pain with my Fibromyalgia and other illnesses. In fact, over half of the Invisible Illnesses I live with now didn’t even exist in my body when Ray snapped this photo. But I still love my body, just the way it is right now.
I’m 5’2″ tall and I weigh about 145lbs right now. I fluctuate up to 150lbs. I have strong arms and legs, but my fingers and hands are weak. Once upon a time in 2008 in Calgary AB, I walked a Half Marathon in -23 degree temperatures (with a windchill of -30). The annual Running Room Hypothermic Half Marathon is quite famous and is now held in cities across North America. This was my very first time – I took a training program but hadn’t trained properly near race day because of my health and really, I probably shouldn’t have even done it. However, I finished in 3:30:22 and in fact it was such a good race time that Ray almost didn’t make it to the finish line in time to take photos of me crossing (it was a surprise for me). I was delighted to finish and vowed I would never do anything like that again (I got a tiny bit of frostbite under my chin which was the only area left exposed).
I love my body now, but there was a time when I mourned for the body I used to have. Back in the mid-2000’s, I used to be in great shape. I went to the gym, I had a trainer named Terrianne and I lifted weights – heavy weights. I was doing 40lb bicep curls and 80lb hip abductors and at one point, I could leg press 800lbs. Yes, you read that right…I could leg press 800lbs. I was well muscled and toned and in the best shape of my life. It was only because of 3 unexpected surgeries between 2006 and 2007 that my life derailed and I was unable to recuperate properly. In fact, I had barely done any proper training for the Hypothermic Half when the Marathon actually took place, so to finish in the time I did was a real testament to the shape I’d been in previously. We really take our bodies for granted when they’re running well, don’t we?
I still love my body! Even after everything it’s put me through with surgeries, and Fibro and Chronic Pain and Chronic Fatigue and all the other Invisible Illnesses, it’s the only body I have, so I try to stay positive and treat it well. I like to try to keep my mind sharp as well so I enjoy doing things like word search puzzles and crosswords and I’ve always enjoyed those online hidden object games. Because I don’t get out of the house a lot, I do tend to spend a lot of time on the computer, but sometimes, I’m aware of being “housebound”. It’s an awful sensation and it makes me feel like an invalid. A shut-in if you will. How about you? Do you ever feel that way?
Unfortunately, I have to use a cane for mobility purposes. I’ve had my right hip replaced and it works great, but my left hip still needs to be replaced in the near future. Additionally, my Left Achilles Tendon has been giving me problems for quite some time and even though I’ve seen a physiotherapist, he’s not been able to do much for me. We’ve tried massage and acupuncture and he feels that there’s not really much else that will help the problem, which he thinks is more with the tendon attaching at the bone. Ultrasound isn’t going to improve anything, so after 4 sessions, we’ve called it quits. The other reason for using a cane is that my right knee has problems with severe pain and an occasional buckling and collapsing problem. It’s arthritis that causes this and so I wear a knee brace and use the cane for stability.
Sometimes, when I’m out running errands, I have to use a rollator because the distance is too far for just a cane. Mine is bright orange and made by Hugo:
I call it my “Pambourghini”. Seriously though, it’s great for use around downtown Langford where I live, or when I take the bus to the doctor because it folds up with one hand and it’s easy to transport if Ray and I take the truck somewhere instead.
Here’s the thing though – I don’t want to be defined by my Chronic Pain, and just because I use a mobility device doesn’t mean I don’t want to look my best at the same time. I try to dress fashionably but I also have my own unique sense of style. I can’t wear high heels, so I tend to wear shoes that have some sparkle to them. I love long dresses for a more feminine touch, and over the course of the last three years, I’ve gone from having summer hair (practically bald) to short hair to long hair.
And when I have a chance to go out with friends or with my husband on a rare date night, I want to look good. I want to dress up and be pretty and look like every other person around me. I don’t want someone to be able to pick me out of the room and say “oh, there’s the one with chronic pain”.
But while I care very much about how I look, I’m often too tired or too sore to go anywhere and when I do go out, it’s usually a medical appointment. The last person I need to impress is my doctor. In fact, I generally want him to see me at my worst, so he knows what my day-to-day look really does look like.
In order to try to take care of myself, I’ve recently taken on a 30 Day Challenge to do 20 Squats, 20 Wall Push-ups and 20 Bicep Curls every day. I want to try and be as fit as I can in the body I have but I know I need to start slow so I don’t cause a Fibro flare-up. This was my modified answer to an invitation from a friend for a 100 Squats a Day Challenge. So far, I’m on Day 2 and I’ve done both days in good form!!! Go me! I set an alarm on my iPhone to remind me what to do and when, and I’m determined to follow through!
There was a time when I didn’t always feel this way. I felt like my body had betrayed me. It was hard to go from being so healthy to suddenly being bedridden half the time, or unable to go for a walk without using a cane. It was frightening to think that this was going to be my future, and chances were it wasn’t going to get better, only worse. And in a lot of ways, it’s been true. I’ve had to give up hobbies I loved because I don’t have the stamina to keep doing them.
When I lived in Calgary, AB, I used to sing in a women’s 4 part a cappella Barbershop Chorus called Rhythm of the Rockies, and in a quartet called Quintessence. We were part of Sweet Adelines International and our chorus would compete in Regional Competition against other choruses from BC, AB and SK – we were the All Canadian Region, Region 26! The winner of the Chorus competition would go on to International competition the following year. In 2005, Quintessence decided to compete for the first time in the Quartet competition and ended up winning Novice Quartet of the Year!! I think we placed 10th out of 16 Quartets as well. We were so proud of ourselves!!!
Quintessence Quartet: Cheryl (Baritone), Pamela (Bass), Lauri (Lead), Judith (Tenor)
Rehearsals became too much for me, when pain and fatigue took over my life. We competed one more year, in 2006 but that was my final year of singing, including in the chorus. What a huge disappointment that was for me. I had been singing in some form or fashion for most of my life. And now, that was gone. It’s even harder now that I live where I live as the very excellent Pacific Edge Chorus from Sweet Adelines rehearses just down the road from me. I would love to be a part of singing again but I just don’t think I could manage the energy required to be involved again. I have to be honest though…every Tuesday night, I’m teased by the fact there’s a rehearsal going on!!
How do you feel about your body? Do you feel like your body has betrayed you since you first developed Fibromyalgia? What has Fibro taken from you? Did you used to be involved in any crafting or hobbies that you had to give up?
Do you still like your body?
Despite everything, I still love my body. I’ve forgiven it for what its gone through. I know it’s not it’s fault, it just is what it is. Overall, on the outside, I think I’m aging well. I have no wrinkles, lots of silver in my hair which I love, and the older I get, the more content I seem to be with life in general. I’m in love with my hubby, my kids are doing well in their lives and my three grandsons are all happy and healthy. Those are the things I like to focus on, not the parts that are breaking down left, right and centre. I try to remain positive and stay joyous. Contentment IS achievable, but it takes fortitude and the right mental attitude.
If you’re struggling, I invite you to reach out. I have a wonderful little booklet with some powerful words from women I’d be happy to pass along to you, so if you’d like that, send me a message using the Contact Page. It’s about more than just body image…it’s empowering in many different ways, but all about being a strong woman. And that’s how I like to think of myself. I am a strong woman!
Our bodies are complex, but they’re all we have. Let’s all be strong and learn to love them again, just as they are.
Remember…
there is always hope
Welcome!
I want to get controversial today and I’m even going to throw in a disclaimer that this post is my PERSONAL opinion. I have no affiliation with any of the organizations mentioned within.
I was recently involved in an online Facebook discussion that got pretty heated. What was it about you ask? Well, let me ask you a question…
Is there a blood test to diagnose Fibromyalgia?
The answer is NO.
Is there a lab test to diagnose Fibromyalgia?
The answer is YES and NO. WHAT????
How can there be both? Well, I’m going to explain it to you and when I’m done, you’ll see how wording can make you believe both things. Before I do though, I’m going to give you the correct answer. As of right now, today, there is NO blood test that definitively diagnoses Fibromyalgia. Not according to the Mayo Clinic, Johns Hopkins or any other leading hospital in the United States.
First off, let’s get something clear about Fibromyalgia. Fibro is NOT an inflammatory disease. It is technically NOT an autoimmune disease. What Fibro IS, is a NERVE disease where the brain misreads the pain signals going to the body through the spinal cord.
The big test that everyone talks about when they say there’s a lab test that DOES diagnose Fibro comes from EpiGenetics. It’s called the FM/a test and it shows some promise that it could potentially diagnose Fibro. They say it does that now, but I say in the future. This article from Healthline explains it in more detail but it’s important to note that more clinical trials need to be done before we can trust this test to be the definitive lab test we’re all waiting for.
Here comes your Science lesson. This FM/a test looks for chemokines, which are a family of small cytokines, or signalling proteins secreted by cells. Some chemokines are considered pro-inflammatory These are formed under pathological conditions (on pro-inflammatory stimuli, such as IL-1, TNF-alpha, LPS, or viruses) and actively participate in the inflammatory response attracting immune cells to the site of inflammation. But as I said above, Fibromyalgia is NOT an inflammatory disease…so how is this blood test going to be useful other than by process of elimination? And by that, I mean it’s going to rule out all the other diseases that DO have inflammatory responses, such as Lupus, MS, Rheumatoid Arthritis, etc.; basically, all the auto-immune disorders, which would have already been ruled out by the doctor through a regular panel of blood work.
The way Fibromyalgia is diagnosed is by using the traditional Tender Point test. There are 18 tender points on the body of a person with Fibro:
As indicated, having 11 of the 18 Tender Points is considered a positive diagnosis. This is the ONLY way Fibro is diagnosed, after all other possible conditions have been ruled out, such as arthritis, lupus, MS, etc.
This Tender Point test has been accepted as the gold standard in the medical community for years and will continue to be utilized until the medical community itself accepts a blood test as the new standard. That may be the test from EpiGenetics or there is one being developed based on RNA, not DNA, by a company called IQuity. They call their test IsolateFibromyalgia and you can read about it in this article.
EpiGenetics has developed their test and are marketing it aggressively, but it hasn’t been endorsed by the major hospitals like the Mayo Clinic or Johns Hopkins, etc. or by doctors who treat Fibromyalgia. It’s accepted in most States, as well as in Canada and several other countries. Insurance and Medicaid will cover it in the US, but I don’t believe there is insurance coverage anywhere else, so you have to pay $1080 for the test, plus possible shipping fees to their California Laboratory and it takes a week to get results. In my opinion, that’s a lot of money for something that doesn’t have the support of the medical community.
For people with all the symptoms of Fibromyalgia, one of the most complex of the Invisible Illnesses, in my opinion, the future could be looking a whole lot brighter a whole lot sooner than we think. Instead of having to rule out multiple other conditions, a simple blood test will be able to help your doctor determine if you have Fibromyalgia, which means treatment can start sooner rather than later. Who knows…perhaps once we have a test to determine if you have Fibro, it won’t be long before we have an actual treatment for it too! One that really works, not just masks the pain or other symptoms for a short period of time.
Your best weapon against Fibromyalgia and all Invisible Illnesses is education. Stay up to date with information from trusted sources like the Mayo Clinic, Johns Hopkins and Healthline. Labs like EpiGenetics are focused on their own work and will be biased toward their own product so be aware of what they’re saying and why. They have a product to sell you and that’s their agenda – to make a profit. Keep that in mind anytime you’re researching information and ask yourself; what’s in it for them and what’s in it for me. The answer to that question can save you a lot of grief and controversy.
Remember, there is always hope.
FIBROMYALGIA IS REAL BUT YOU WILL ALWAYS FIND DOCTORS WHO DISAGREE
If you’ve been to my blog before, you know that I live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. If this is your first visit, you now know something about me. I want it made very clear that YES…Fibromyalgia DOES exist.
Walk a mile in my very painful shoes and you will know exactly how painful it is to live with Fibro. Every one of my muscles feels like it’s being dragged in concrete and every joint feels like it’s been twisted, then put into a mechanical vise and clamped as tightly as possible. I get shooting pains in parts of my body that I didn’t even know existed, for no reason at all. My arms burn and my hands and feet tingle or go numb.
The brain fog is awful…forgetting what you’re saying in the middle of a conversation is so embarrassing. I can’t remember what I ate for breakfast. I can’t remember if I ATE breakfast. I take medications that cause horrible side effects like weight gain and shaking hands and brain zaps…a sensation like an electrical shock that runs across your brain and where you can feel AND hear a literal buzz. I am constantly exhausted by the lack of sleep that comes with Fibro. It’s never refreshing and it’s never enough.
Yet, with all of this that I and my fellow Fibromites go through, there are still doctors who say “it’s all in your head” and “it doesn’t exist”. Well, tell me then…what DO I have wrong? All my tests come back negative for everything you tested me for…but I have all 18 of the 18 tender points that indicate Fibromyalgia is what I have.
Here are things I’ve had to say to friends and to DOCTORS who have questioned me about Fibro and Chronic Pain at various times over the last 10 years:
1. This is not “just in my head”. My pain is real.
2. I wish Fibro came with bruises, that way, you could see how much pain I’m feeling just so you could believe me.
3. It never goes away. My pain is always there, even when I’m acting “normal”. Don’t let my smile fool you, I am always in pain. Always.
4. There is no standard day or week or month with Fibromyalgia, It changes from hour to hour sometimes. Some days are better than others. Some days I think I want to die (this one always gets me in trouble).
5. Staying home instead of working or doing something fun isn’t all it’s cracked up to be.
6. You think I’m faking being sick, but really I’m faking being well.
7. The Brain Fog is terrifying. You try forgetting what you’re saying in the middle of a sentence and see how it makes you feel – you feel stupid and old and easy to dismiss. I lose things easily and am easily distracted. It’s so frustrating.
8. Day to day activities are exhausting. Heck, getting out of bed is exhausting.
9. Even if there were drugs that worked well, I am not a drug seeker and my history will show that. I have ONE Family Doctor and use ONE Pharmacy! I just want relief from the pain.
10. What part of “chronic condition” are you having a hard time understanding? I am not going to get better. I am going to live with this for the rest of my life. I hope to get better but it’s never going to go away. Don’t give me false hope.
11. I’m willing to try just about anything, but just because something worked for some Aunt’s friend’s cousin’s sister doesn’t mean it’s going to work for me. We’re all different and treatment isn’t a one size fits all option. But, whatever…I’m willing to listen.
12. Sometimes, I have to cancel my plans at the last minute. Sometimes, I cancel my plans with the same friend 2 or 3 times in a row. It’s not a reflection on the friend. It’s my body.
13. I wish more doctors understood Fibromyalgia and Chronic Pain and took us more seriously. Do you see me as a drug seeker too? What about when my x-rays show a body filled with arthritis? How do you deny my pain then? I just want you to help me find answers and relief.
14. Some days, even my hair hurts
15. There are days when the most I can accomplish is moving from the bed to the couch, and that’s okay. At least I did something.
16. On the days I feel good, I push myself too hard to get things done, even though I know I’m going to pay for it later. I hate being thought of as lazy. When my husband comes home, I can honestly say to him, “honey, today I cleaned up, did the dishes, vacuumed the house, did the laundry, baked cookies and scrubbed the bathroom”. And then I know I’ll be bed-bound for the rest of the week.
17. What you see on the outside doesn’t necessarily reflect how I feel on the inside.
18. My chronic fatigue is at times overwhelming and I can’t push past it. It’s exhausting to be this exhausted.
19. I wish a simple nap would help to relieve my pain, but it will not disappear if I lay down and have a rest.
20. I’m a real person with real pain. I didn’t ask for this but I’m being forced to live with it. I didn’t do anything to get this, but sometimes I feel like I’m being punished.
Oh, it can be so frustrating having an Invisible Illness like Fibro. I truly do wish there were outward signs of this illness so that people could see that you’re ill. Something like bruises or a rash, or big F’s showing up on your body would be perfect (“oh look…she has F’s all over her…poor thing, she has Fibromyalgia…go get the door for her”). I truly wouldn’t mind that if it would help a doctor believe in what I’m going through, trust me. But, as I always say…
there is always hope!
Welcome back everyone.
Sometimes, a picture really is worth a thousand words. Today’s blog post is all about memes. As in, 25 memes that capture what it’s like to live with Fibromyalgia, Chronic Pain, Chronic Fatigue Syndrome and Invisible Illness. I think they speak for themselves.
Now a lot of you are probably thinking I’m crazy, and I am. While you’re getting up early in the morning to face the rush hour commute to go to a job you may not even enjoy, I could still be snuggled in my bed, fast asleep without a care in the world, right? Well, that’s the scenario you probably have in your head, but it’s far from the truth. As a Person with Chronic Pain (PwCP), I’ve probably been awake half the night because pain wouldn’t let me sleep; every muscle feels like concrete and every joint feels like someone has twisted it, put it into a machining vise and then clamped it three times tighter than necessary.
My brain hurts too…I want to be going to work with you. I loved my job prior to going on Long Term Disability (LTD) and the jobs I held before that. I was an Administrative Specialist at several different companies, mostly supporting Retail Operations and the people who managed the work; Directors, District Managers and Store Managers. In the past, I’ve worked for Rogers and Bell and my last company was The Forzani Group, now known as FGL Sports. I supported the group that ran the former Sport Mart stores (now closed), but am still considered an employee of FGL Sports while on LTD. I receive an employee discount and recently celebrated 10 years with the company.
I worked with an amazing group of people. I loved going into my job every day, knowing it was going to be challenging and fun and never knowing exactly what the day might bring. I organized team training events for Store Managers, travel and training for the District Managers, travel for the Regional Manager Rob Hillier and kept the Director, John Hould on track for his daily activities.
Then came the days when work started to become difficult. Too difficult. I had been doing all of this under the radar of Invisible Illness, which none of them knew about but it was starting to become an issue. Things that used to come easily to me became a struggle. I was famous for remembering things without needing a list and suddenly I was carrying notebooks with me because the Brain Fog was so bad. I would stop conversations in the middle of speaking because I forgot what I was saying. My pain levels were getting higher and higher but I refused to use a cane at work for my bad hip to ease the pain as I didn’t want to be perceived as being weak or incapable of being effective (this was prior to my right hip replacement). I couldn’t concentrate during meetings and even typing became a challenge – it still is to this day.
Once all the Sport Mart stores were closed, there wasn’t really a job for me any longer, so the HR department encouraged me to go on Short Term Disability while I figured out my health issues. Short term became Long Term, and I never went back. My last day of work was in October of 2009. I started with the company in February of 2008. That’s right…I’ve been on Disability with FGL Sports for over four times longer than I worked for them. It was distressing for me to have to leave, because I loved the work and I was very good at what I did. My identity was wrapped up in my work and had been since I first started my career in 1991. When I found myself at home on leave, I didn’t know what to do with myself. I slept a lot in the beginning which was healing, but after that, I didn’t know what to do. I felt invisible, as I’ve discussed on this blog before. And being invisible can be a very painful thing. People accused me of not wanting to work, that this was an extended vacation for me, and that was really hurtful. If they could see inside me, they would know how very much I wanted to be back at my desk, with meaningful work to do. The mistake I made is that I didn’t go around complaining about my health at work, so no one knew how badly I was hurting except for a couple of select people in HR, plus my bosses John and Rob.
I’ve asked my friend Tori Martin if I could share a quote here that she recently posted on Facebook and she graciously gave me her permission. This is what she said:
“STOP suggesting that people with disabilities of ANY kind just aren’t trying hard enough.
There are VERY few people who don’t want to work and contribute in a meaningful way according to society standards. Additionally, being able to work is NOT the ultimate measure of a person’s worth. Frankly, I am much more impressed at how a person treats others than what kind of work they do.I myself am unable to work due to physical limitations and it drives me crazy sometimes. Guess what though, I still have an incredible amount to give! I contribute to society through my photography, through having a huge heart that shows so much love and concern of others, through helping others, through occasional teaching of archery which helps many find confidence and enjoyment in physical activity. I contribute by paying taxes, voting, getting involved in local groups and causes and supporting local businesses. I am NOT a waste of space. And not that it’s anyone’s business, but I worked from the age of 10 until I was 39 and was literally bed-ridden for 2 years. My dr’s have been trying to help find ways of giving me back quality of life and things are so much better than those first two years, but nowhere near where they need to be to hold down even a part-time job. Telling people with mental or physical disabilities they have no worth if they can’t work is b*llshit and needs to stop. I am disgusted to have to say this after reading comments on a friend’s post. Apparently compassion and empathy is something that some folks just don’t have.”
I think Tori really nails it with that comment. She lives with Rheumatoid Arthritis that really affects her hands and I know for a fact that she would love to be working if it were possible. Her friend John Hewak responded with this reply to her post:
“What makes it worse is that we feel the need to justify ourselves, due to both real and perceived judgement from others. People say things like “must be nice”, or “how can I get that?” Well first get f*cking sick, really sick, lose almost everything, navigate the tortuous health system, marshal up a posse of docs, specialist, therapists etc who validate you, get a lawyer, get on welfare, go through the painful application procedure and wait months to hear back while you sink into poverty. Most applicants are rejected first time . Repeat and rinse. If the institutional, bureaucratic, legal, and medical stars align, you might be accepted, in which case you get $1,000 to live on monthly., while you struggle with pain and alienation on a daily basis. Try that for a while. Wow, it’s so great not to work! Living the life of Riley.”
And finally, a third friend named John Poulson replied:
“I have found that people who give the most are the ones who have experienced hardship the most. People who have never experienced hardships have absolutely no idea or clue of what life really all about. It’s not about “things” but the experience you lend or give to others. Having compassion and showing that there are people out in the world that do care. Live; love; laugh. It’s the tears that makes one appreciate the good things in life. That’s my motto. ❤️❤️”
It’s hard to be at home when you’d rather be out earning a living. Everyone thinks we have it so great, but when you’re housebound and feeling like crap, there’s nothing fun about it at all. We tend to be forgotten by our friends and sometimes our family members as well. We don’t get to go out and do “fun” things whenever we want – our time is generally taken up with Doctor appointments or physiotherapy treatments, etc. anyway.
So, to wrap this up, don’t forget your friend or family member who lives with Chronic Pain from Invisible Illness. Call them, ask to stop by for a visit, or to take them out of the house for a bit, whether it’s for lunch, or just a drive. They will let you know what they’re up for and how much energy they have. Even if they say no and they’d rather stay home, just keep in touch. That’s all we’re asking for. And don’t assume we’re being lazy. Trust me…most of us would rather be working if it were possible.
