Sleepless In (Enter City Here)

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.

141.-sleep-deprivation-300x224

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

PatioFence

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:

0503-figure-3

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:

PamAsleep2

Collapsed in exhaustion. Notice my glasses are still on.

There is always hope!

 

The Opioid Crisis vs. Us

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 relieversheroin, 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?

Pain

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.
Me.
Thanks for reading.
There is always hope.
* https://www.drugabuse.gov/drugs-abuse/opioids/opioid-overdose-crisis
**https://www.cihi.ca/en/opioid-crisis-having-significant-impact-on-canadas-health-care-system

An Attitude of Gratitude

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!

A Chronical of Hope…

I have been loving the experience of blogging and went into it with no expectation of making money. I wanted to write about Chronic Pain and Chronic Fatigue and Fibromyalgia and Invisible Illness. I didn’t even think it was possible to make money writing about subjects like that, but apparently, there is a way to monetize a blog to do just that. So…I’ve started a second blog.

The name of the new blog is A Chronical Of Hope – notice the play on words with Chronical, rather than the typical Chronicle? I have to tell you something funny about that. I use a free program called Grammarly for my writing online to make sure I’m spelling things correctly and using proper grammar (you’d be surprised how many times I use commas inappropriately!). When I registered the new domain name at Hover.com, there was no problem…www.achronicalofhope.com is all mine. But when I went to the hosting site Bluehost.com to actually host the domain, Grammarly corrected the word Chronical to Chronicle and I didn’t notice (I was doing this at 3am) and it totally screwed up everything. I couldn’t launch my new site for the life of me, and I couldn’t figure out why…everything was set up properly, everything was pointing in the right direction, but nothing…it would not come up online. I finally noticed the problem and a fine young man named Deepak at the Helpdesk spent 30 minutes working with me to resolve the problem – most of the time being taken because it takes time to switch things over. I had to laugh…good old Grammarly, doing its job too well!

I’m also doing something a tiny bit different in that I’m using WordPress.org, instead of WordPress.com to produce content on the new blog. All this means is that I own the content of A Chronical Of Hope – on WordPress.com, they own everything, because you are being hosted on their platform, which is why it’s free. I pay Bluehost a fee to host my new blog so I own the content. Big difference.

The main reason I’ve started the second blog though is that I plan on turning it into a monetizing blog – one where I can earn money.  I could do that with There Is Always Hope, but I would have to change-up my theme again and make a bunch of other changes to it, and I’m just not prepared to do that. I want to keep this blog for simply writing for the joy of writing. I will be marketing A Chronical Of Hope in a different way although to the same audience – those who live with Fibro and Chronic Pain and Chronic Fatigue Syndrome and Invisible Illness. I’ll be working with Affiliates such as Amazon, selling products that would appeal to people with those conditions and I will use this blog to cross-market by linking to A Chronical Of Hope when appropriate. I also have plans to sell my e-Book on the other blog as well as I wasn’t able to set it up to sell on this one.

e-Book you say? Yes, I put together an e-Book with 30 Positive Affirmations in .pdf format so you can carry positive words in your heart. If your device can open a .pdf file, you can take these words with you wherever you go and read them whenever you need them. All done up in a pretty format, I think you’ll like it. Just $3.00 and payable via PayPal. You can click here to order if you’re interested and it’s now available to order off the last post as well.

I hope you’ve been enjoying my blogging journey as much as I have been. I’ve received a lot of positive feedback on my writing and the topics I’ve chosen to write about and I hope to bring you more in the near future. Thank you for following me. I appreciate each and every one of you. Remember…

There is always hope!

 

That Which Brings Me Joy

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:

  1. Watch a sunrise or sunset
  2. Send someone you love snail mail
  3. Volunteer
  4. Get crafty
  5. Bake something
  6. Keep a journal
  7. Take a walk
  8. Do a good deed
  9. Read a novel
  10. Go to the museum
  11. Sing
  12. Take a class
  13. Enjoy a power nap
  14. Log off Facebook
  15. Practice positive affirmations
  16. Mentor someone
  17. Plant a garden
  18. Have a warm bath
  19. Go to an art gallery
  20. 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.

BrainWeasels

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!

There is always hope!

 

Feeling Crafty

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:

MultiMediaPiece

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:

OurNest

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:

BeadIdeaForFence

I’ve put cardboard behind so you can actually see the beads, but they would normally just hang through the slats

PatioFence

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!

Product Review – AloeMD

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:

  1. Go to www.aloeveritas.com/4everaloe
  2. Click on the PainSmarts tab at the top of the page
  3. Scroll down to find the link that says “Get your free sample”

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 group 4ever 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!!!

A New Piece Published!

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!

poetry

i wore my burden gently, as it burned my tender skin
i pleaded with my enemy, my heart would not give in
it wracked my body, pummelled me, i fought back with my all
the pain, it tried to kill me, but still i wouldn’t fall
i’ve always thought a traitor lived inside my skin and bone
an evil little monster never leaving me alone
each stabbing pain, each ache, each throb, each pounding in my brain
that rhythmically sends the message i’ll never be the same again
There is always hope

I Want You To Want Me

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:

  1. the state of being intimate.
  2. a close, familiar and unusually affectionate or loving personal relationship with another person or group.
  3. an act or expression serving as a token of familiarity, affection, or the like, to allow the intimacy of using first names.
  4. an amorously familiar act; liberty.
  5. 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:

  1. Go to a community play,
  2. Do an inside or outside picnic
  3. Work out together
  4. Go roller skating or ice-skating
  5. Movie marathon with ice cream sundaes
  6. Play hide and seek in a cornfield (or the woods)
  7. Go on a walk around your neighbourhood in the evening
  8. Go to estate sales together
  9. Make a romantic dinner at home
  10. Build something together
  11. Go bowling
  12. Go hiking!
  13. Find the best happy hours in town and make the appetizers your meal
  14. Have friends over and play board games
  15. Go to an antique store and talk about the past lives of old objects
  16. Get some thrift store tennis rackets and go to your city’s free courts
  17. Go to the neighbourhood pool
  18. Fly kites!
  19. Test drive an expensive car
  20. Go on a tour beer, food, etc.
  21. Find out what tours businesses in your city offer and try one out.
  22. Go thrifting or garage sale-ing together
  23. Do a breakfast date
  24. Find a free (or very cheap) class and take it together
  25. 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.
*https://www.mayoclinic.org/chronic-pain/art-20044369

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

 

 

 

Stream of Consciousness Saturday

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!

 

One Is The Loneliest Number

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

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

  1. Figuring
  2. Completing
  3. Boring
  4. Cuddling
  5. 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

The Mighty Strikes Again!

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!

Everybody’s Bill Of Rights

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*:

  1. You have the right to be fully informed about one’s medical condition;
  2. You have the right to be advised of the available treatment options;
  3. You have the right to be involved in treatment decisions;
  4. You have the right to information on the qualifications and experience of the health professionals from whom services are received;
  5. You have the right to receive considerate, compassionate and respectful public health services;
  6. You have the right to confidential communications with health professionals;
  7. You have the right to have access to and copies of personal health records and to have them corrected, if necessary;
  8. You have the right to have health records kept confidential and not used for any purpose other than public health services without written consent;
  9. 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
  10. 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**:

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. You have a right to considerate, respectful and non-discriminatory care from your doctors, health plan representatives, and other health care providers.
  6. 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.
  7. 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.
* http://publications.gc.ca/collections/Collection-R/LoPBdP/BP/prb0131-e.htm#c.%20%20Patients%E2%80%99%20txt
** https://web.archive.org/web/20050301090705/http://www.consumer.gov/qualityhealth/rights.htm

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:

  1. You have the obligation to treat your doctor and other medical personnel with respect.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.

 

Creature Comforts

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.

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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.

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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.

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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

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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.

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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.

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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.

 

 

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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.

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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!

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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!

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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.

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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!

Some Body To Love

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!  220px-Breathe-face-smile.svg

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.

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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).

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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:

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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.

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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!!!

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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

Controversial Debate

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.

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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-1TNF-alphaLPS, 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.

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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:

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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.

Let’s Make One Thing Clear…

Welcome!

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.

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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!

What It Memes To Have Chronic Pain

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.

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Until next time…

there is always hope

Wishing While I (Don’t) Work

It’s Monday, and I wish I was at work.

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 and torturous 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. 

At least I would. 

Remember…there is always hope. 

Explaining Exhaustion & Pain

Welcome!

Have you ever felt tired? So tired you could barely move?  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 uncertainUsed 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 has 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:

  1. Sleep in a quiet dark room with a slightly cooler temperature than normal. Wear a sleep mask if necessary.
  2. 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.
  3. Set a regular bedtime and wake up time. Establishing a schedule can help the body recognize good sleep habits.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.).
  9. 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.
  10. 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. At 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. Perhaps there are items from this post that will help, such as pillows or a special scent. The key is, whatever you do, do it with consistency. None of us wants to feel quanked.

Remember…there is always hope

Something Different…

And now for something completely different!

Every now and then, I like to put something on this blog that is seemingly unrelated to Chronic Pain, Fibromyalgia and/or Invisible Health. I like to change it up a little as you might remember from Fun and Games.

Today, I’m sharing something that again has been floating around the Internet forever. I’ve changed it to encompass my Children, not just my daughter as the original version goes. I’m proud of both of my kids. They’ve each gone through some difficult circumstances in their lives and come out the other side better people. I’d like to think that advice like this might account for some of it.

Here we go:

❤️❤️❤️❤️  RULES TO TEACH MY CHILDREN ❤️❤️❤️❤️

1. Make your bed every day, even if it’s right before you get in it.

2. You don’t have to wear underwear… if you’re in an accident they’ll just cut your clothes off anyway.

3. Travel light through life. Keep only what you need.

4. It’s okay to cry when you’re hurt. It’s also okay to smash (some) things; but, wash your face, clean your mess, and get up off the floor when you’re done. You don’t belong down there.

5. If you’re going to curse, be clever. If you’re going to curse in public, know your audience.

6. Seek out the people and places that resonate with your soul.

7. Just because you can, doesn’t mean you should.

8. 5-second rule. It’s just dirt. There are worse things in a fast food cheeseburger.

9. You are a woman, you do not NEED a man. Or Vice Versa

10. Happiness is not a permanent state. Wholeness is. Don’t confuse these.

11. If you’re staying more than one night, unpack your bag.

12. Never lose your fierce spirit.

13. Be less sugar, more spice, and only as nice as you’re able to without compromising yourself.

14. Can’t is a cop-out.

15. Hold your heroes to a high standard. Then, be your own hero.

16. If you can’t smile with your eyes, don’t smile. Insincerity is nothing to aspire to.

17. Never lie to yourself.

18. HER – your body, your rules. HIM – re-read that.

19. If you have an opinion, you better know why.

20. Practice your passions.

21. Ask for what you want. The worst thing they can say is no.

22. Wish on stars and dandelions, then get to work to make them happen.

23. Stay as sweet as you are.

24. Fall in love often. Particularly with ideas, art, music, literature, food and far-off places.

25. Fall hard and forever in love with nothing but yourself.

26. Say Please, Thank You, and Pardon Me, whenever the situation warrants it.

27. Reserve “I’m sorry” for when you truly are.

28. Naps are for grown-ups, too.

29. Question everything, except your own intuition.

30. You have enough. You are enough.

31. You are amazing! Don’t let anyone ever make you feel you are not. If someone does….walk away. You deserve better.

32. No matter where you are, you can always come home.

33. Be happy and remember your roots; family is EVERYTHING.

34. Say what you mean and mean what you say.

35. No one will ever love you more than I do.

36. Be kind; treat others how you would like them to treat you.

37. If in doubt, remember whose Daughter/Son you are and straighten your crown, and own it like a boss!

Share your thoughts in the comments…is this advice you would give to your children? What is the best advice you have given to them? What was the best advice you ever received from your parents, or the people who raised you?

Do you think any of these pieces of advice DO relate to having an Invisible Illness? If so, which one(s)?

The reason I ask is that I think ALL of these questions could apply to someone with Chronic Pain. For example, #1 – isn’t it nicer to sleep in a bed that’s fresh and cool and made, with the sheets and blankets “just so”? And #6 – we all know that stress increases our pain levels, so by seeking out people and places that resonate with our souls, we are filling ourselves with the kind of peace that can end up helping us heal.

Let’s look at #14 – Can’t is a cop-out. I’m sure we’ve all said we “can’t” do something. Is that really true, or are we saying we can’t because it’s too painful or too overwhelming? Well, can we try something different then, or break the task into smaller pieces? Can we ask for help? Are we automatically saying the word we can’t, without even trying first? Sometimes we do the “kneejerk” reaction, without even stopping to think if something is possible. If we give it a try we might come to realize that not only is it possible, it’s actually quite enjoyable and beneficial at the same time.

For #25, Fall hard and forever in love with nothing but yourself – well, that seems a little narcissistic but if you don’t love yourself first, can you be capable of loving anything else? I believe there has to be a level of self-love in a person in order for them to love other people. You have to know what love is, in order to give love away. And I truly believe that love is for giving away to others!!

And for #37 – well, I think that says a lot too. On your highest pain days, when all seems lost and you don’t think you can go on, sometimes you’re going to have to remember your roots, straighten your crown and own your life like a BOSS! No one knows you better than you and these are the times you have to pamper yourself like never before. Pull out all the stops on your comfort item list and do whatever it takes to feel better.

Go through the list above and see if you make Chronic Pain and Invisible Illness positives from the rest of the numbers. I was able to and even if you’re not a naturally positive person, I think it can be done.

Remember…

There is always hope!

Chronic Pain Comforts

Welcome back!

When you live with Chronic Pain, whether it’s from Fibromyalgia, Osteoarthritis, Migraines or any other Invisible Illness, you want to find as many ways to be as comfortable as possible. You may or may not be taking pain medications, so sometimes the things on this list are the only things you rely on to get relief. You can find lists like these all over the internet, but I’m going to share my favourite ideas here. I won’t give you product names as there are far too many to mention and everyone has their favourite brands. I don’t tend to use all of these products myself, but many people do. If it works for you, great! If it doesn’t, don’t worry about it…move on and try something else.

Some of these things are for use at home, some are for taking with you when you’re out and some can be used in both locations. I like to have doubles of things such as Wet Wipes. They’re refreshing on the go or at home when bathing is a challenge and you need a quick clean up.

In no particular order:

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Heating Pad: Many people find using a source of heat to be extremely comforting. Just remember to take safety precautions with your skin, and never use a deep heating rub with a heating pad at the same time, or you’re asking to be burned.

Ice Packs: In much the same way as using heat, ice packs can be a lifesaver for pain. Some people with chronic pain use both at the same time…heat in one area and ice in another. Experiment with what works for you.

Eye Mask: When you’re having trouble sleeping, this can be quite soothing, especially if you prefer to sleep in complete darkness. It’s also helpful for Fibro induced migraines.

Ear Plugs: Again, super helpful to block out distractions to help you sleep better and to aid when Fibro migraines strike.

Epsom Salts: Soaking in a hot Epsom Salt bath is one of the best things you can do to soothe aching joints and muscles. There has been an explosion in Flotation Therapy lately in cities all over North America. People spend up to 90 minutes at a time in skin temperature Epsom Salt flotation therapy tanks, literally soaking up the benefits of this mineral. The ratio of Epsom salt to water in most tanks is such that many are more buoyant than the Dead Sea!

Magnesium Rub or Gel: Another essential mineral needed by the body, most of us are deficient. Using a good rub or gel can help alleviate pain. Ask your doctor if a supplement of Magnesium is right for you as well.

Pillows: Pillows for sleeping, pillows for propping, pillows for wedging, body pillows…wherever you need some extra support, finding the right pillow can be crucial to your comfort. Firm, medium or soft; feather or foam, whatever your preference is, you’re going for comfort, so let your body be the guide here.

Shower chair: If bathing is uncomfortable for you, but showing tires you out, consider getting a shower chair. They come in many sizes and shapes and can be found in lightweight, portable designs.

Kindle or e-reader: Take your entertainment with you or leave it at home, but always have your favourite books at your fingertips with an e-reader. There are many services that let you download books for free including your local library.

Body Lotion: Your favourite scent can help keep you smiling.

Magic bag/wheat pillow: These are the type of bag you can either microwave or freeze and use for spots on your body for various aches and pains

Scented candle: Some people find having scented candles burning helps them to relax. Try different scents according to the seasons or just choose your favourites.

Mints or Gum: If you tend towards having a dry mouth, you might want to keep mints or gum handy, or hard candies to suck on. I personally like Tic Tacs as they are small, come in lots of assorted flavours and are easy to pack in even the smallest of purses.

Colouring book: Currently one of the fastest growing trends to help relax you, there is an endless array of styles and designs to choose from. I have several on the go at any time, and use both pencil crayons and felt markers to colour mine. Jenny Lawson’s last book is part story/part colouring epic.

Herbal Tea: Even if you’re not normally a tea drinker, a good herbal tea at night (decaffeinated of course) can be a wonderful way to unwind before falling asleep. Many delicious flavours are there to choose from; I personally like fruity flavours the best.

Water to stay hydrated: Whether you use a water bottle or fancy decanter, having cold fresh water is essential in maintaining optimal good health for any condition. Make sure you keep it fresh by changing drinking the contents often.

Chocolate: Definitely an indulgence but if you’re not a fan of chocolate, at least keep a favourite snack nearby as a treat.

Fan: A small portable fan or a hand fan can help if you have trouble regulating your body temperature.

TENS Machine: Many people swear that using a TENS Machine helps with pain. I personally haven’t found relief with one, but everyone is different. Find out if you can rent one through a Medical Supply Store first before buying a unit, so you know if it will help you or not.

Portable Cane: A foldable cane can be super handy for around the house or outside if you find that sometimes you’re unsteady on your feet. They come in various colours and patterns so you won’t be stuck with “just” basic black if you want something to stand out with.

Essential Oils: These oils have long been thought to have medicinal purposes and many people swear by their properties. There are several good companies that market these and many more little independent companies to check out. Some carry a full range of products designed to use as a set and some carry individual offerings. Find what works for you.

Wet Wipes: The portable bath! When you need to freshen up but you’re just not feeling well enough for a proper bath or shower, wet wipes are the miracle bath.

Dry Shampoo: Like the above, dry shampoo is a spray/shake in, brush out helper for clean fresh hair without having to go through the full and proper wash and dry.

Favourite Pet or Stuffie: Everyone needs someone to cuddle!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

So there you have it, my list of essential comfort items when you need a little pick me up. Are there things you can think of that you would use? Share them in the comments so we can add them to our own lists.

Thanks for reading and remember…

there is always hope

 

 

On Being BiPolar…

Hello again!

When I posted about the various conditions that I live with, I deliberately left out mentioning Bipolar Disorder. I decided that because it was such a huge part of my life, it needed a post of its own. And guess what…here it is!

I was first diagnosed as having Bipolar Disorder just a couple of years ago when I was 54, but the reality is I’ve probably been Bipolar since I first entered puberty at the age of 13. Up until that point, I was a fairly quiet girl who loved nothing more than grabbing an apple and a book and climbing the neighbours’ maple tree to read for hours.  I could easily go through a book a day and would stay up there until my mom called me down for dinner. Once I turned 13 though and my period started, that initial surge of hormones did something major and destructive to my body and I swear that’s when I experienced the onset of my Bipolar Disorder. I went from nice girl to rage monster in 0.2 seconds flat. I become a mouthy little bitch who ditched her books for boys, smoking and drinking and fell in with a group at Junior High that was definitely the wrong crowd. I lost my virginity just before turning 14 (at the drive-in watching Star Wars) and started to do drugs like pot and hash. I also began disappearing from home for days at a time, staying with friends after partying much to the dismay of my family.

I was fearless during this time. It certainly never occurred to me that any harm would come to me. I did what I wanted when I wanted, and if my Dad tried to discipline me, I just didn’t go home. My poor sister would often be sent to go looking for me, a task she obviously resented (and that I wasn’t aware of until we were grown-ups), but I was only found when I wanted to be found. I was still in school and managed to stay in classes until I finished Grade 11. Then I made the decision to hitchhike to the United States for some adventure, which led to me meeting the man who would become the father of my two children. I had many adventures during my time in the States, and most of it was likely fueled by my Bipolar state. There were a lot of crashes too, and I can remember times where I would be in desperate tears wondering what was wrong with me. Why was I acting like a cheap prostitute half the time and a modern-day adventuress the other? My impulsiveness was out of control and even today, it still is.

I came back to Canada from the States when I was 20 and the mom to my son Troy after discovering I was pregnant when he was 6 months old. The dad left us and after staying with a friend in Bellingham, WA for a few weeks, I realized that my best option was to come back home. Shirley, my friend in Bellingham had already done so much to try and help me, but I couldn’t keep taking advantage of that friendship. Her brother even offered to marry me to keep me in the country so Troy could claim his America birthright (Troy was born in Sacramento, CA on January 30, 1982), but as flattered as I was, I decided it was easier to move back to my own home country. Despite everything I had put him through, my Dad came down to help me bring my few meagre belongings back and to meet his grandson for the first time. I found a place to live in Surrey, BC, went on Social Assistance for a period of time and then gave birth to my daughter Ashley on May 1st of 1983.

Time passed, I met a man, married him after a few years of living together, divorced after 3 years, had one more long-term relationship and then finally met Ray. We went through a lot of ups and downs in our relationship, partly because of my having kids and he was a bachelor, and partly because of my undiagnosed Bipolar Disorder. He even insisted we go for counselling at one point when things were really bad for us, which definitely helped us, but it didn’t change the fact that I still had incredible highs and lows in life and I never knew which version of me we were going to get.

Fast forward to now. I finally received a proper diagnosis at the age of 54 and what a relief that was – to finally have a name for what I was going through. It took some time to realize that I had had this going back to my early teens but there’s no denying it, not when I compare then to now and the symptoms I experience. My highs and lows mirror what I went through as a teenager, except now I’m on medication to help regulate those mood swings. Dr Leong put me on a medication called Seroquel which helped immediately – what a relief! Once I had some clarity back in my life, it was easy to see what I had been missing and what I had been doing. It was embarrassing as well. I could remember some of the highs and the impulsive behaviours – like shopping. I would shop online at 2am for things I really didn’t need but wanted nonetheless. It’s not that we couldn’t afford it, but it was all just frivolous stuff… jewellery, clothing, things like that. I mean, where do I go that I need to dress up? How many dresses does one lady actually need to own? Plenty according to me! And I’d conveniently “forget” to enter these transactions in our budgeting tracker so I could pretend I hadn’t spent any money.

If you’ve read my other posts, you’ll know that after a long period of being on the Seroquel with no problems, I began to have hallucinations while taking it that were directly related to the drug. I would hear music playing when no one else would hear anything. It was very distinctive and alternated between classical, jazz and country (which I don’t like). There wasn’t any singing, just music but after a while, I started hearing voices too. I was seen by a Psychiatrist to ensure I wasn’t developing Schizophrenia, but once given the all clear on that, my doctor decided to do an EEG and MRI, to make sure we hadn’t missed anything, like a brain tumour or scar tissue in the brain. I posted about that here and I haven’t heard back regarding the MRI – possibly because there’s nothing to mention, and possibly because Dr Leong just moved to a new practice and I haven’t heard from him yet. He is keeping me on as a patient, so that’s good news and he’ll keep Ray too since his new office is in Mill Bay which is about a 30-minute drive away from Langford and Ray will need to take time off work to drive me there. Transit is not an option.

At any rate, as I’ve mentioned, we had to stop the Seroquel and I started a new medication called Abilify. I have been SO happy with this new drug. I’ve regained some of my energy, I’ve found my interest in doing things around the house again, such as housekeeping and crafting and things like that. Look at what I made the other day:

IMG_0470

Our Nest

This is a multi-media art piece I worked on for a week, just a bit at a time. Sorry, it’s a bit glare-y, it’s framed with glass on top. This is the first thing I’ve worked on in over 2 years so you can tell how long the Seroquel dampened my emotions and interests and how the Abilify brought back ME!

I hate the fact it’s taking drugs to make me feel things again but I’d rather be on medication than not. I don’t like bouncing between raging and being depressed. Or being manically high and overly cheerful and then crashing and sleeping for days on end.  My insomnia is already bad, and I’ve gone up to 8 days without sleep. At least with Abilify, my sleep patterns are closer to normal than they’ve ever been (but still pretty wonky!).

No, it’s not easy to have a Bipolar Disorder, but it’s a part of me for life and I’ve finally learned to accept it. Acceptance is the hardest thing but without it, there is nothing but stress. By realizing this is a part of me, the same way I have silver in my hair, or I have the ability to sing, it normalizes the disorder and makes it more natural. I go a long way in making others feel comfortable with who I am as a total person as well. I don’t want people to see parts of me, like the Manic part and the Depressed part. I want them to see the whole me and that includes all the parts, good and bad, high and low. Its taken a long time, but I’m finally there. It took the proper diagnosis and the proper medication, but the real me is finally back again.

It’s about time.

There is always hope.

Good Advice…

I want to share with you some valuable advice from another Pain Warrior. This is a person who lives with Chronic Pain from Fibromyalgia and his name is  Tom Seaman from The Mighty.  He just shared these thoughts recently and they struck such a chord with me that I had to share them with you.

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I used to blame myself for having Fibromyalgia and Chronic Pain and not being able to do things like everyone else. I figured there must have been something I had done in my past to cause it. I was a pretty rebellious teenager and did a lot of heavy partying, including drinking and drugs. I was in a very abusive relationship with my first “love”, the man who became the father of my two children. I have no doubt these things may have contributed to the stresses in my life, along with a huge and ugly surge of hormones when I started my period at the age of 13 (and turned from a normal young girl into a rage monster…no lie, you can ask my sister!).

As other stresses entered my life, my Chronic Pain got worse. So did my Osteoarthritis and my Chronic Fatigue. I was a single parent for a period of time and worried about my kids being on their own so much while I commuted three hours a day and worked at a job I loved. There were other relationships including a marriage that didn’t work out before I finally met my (now) husband Ray who is the finest man I could have ever hoped for. All of it took a toll on my health though, and I believe that a surgery I had in 2004 was the catalyst for my real downfall.

I had been suffering from severe Gastric Reflux Disease…GERD. I thought it was normal to eat a handful of Tums at a time and so had done nothing about my heartburn until Ray convinced me to talk to my doctor. She sent me for tests that showed I had a very severe form of GERD and recommended that I see a surgeon to have a surgery called a Nissen Fundoplication. It was named after the doctor who invented it, and basically what they do is take the top of the stomach and wrap it around the bottom of the esophagus, effectively preventing anything from backing up into the esophagus again. This means no more acid reflux and no more heartburn. It also means you lose your ability to vomit, so if you ever come down with the flu or become pregnant, you are in huge trouble. If you are dry heaving or attempting to vomit, the strain on the Fundoplication can stretch it enough that it loosens so you do bring up the contents of the stomach, and need to have the surgery redone. In my case, I need to go to the hospital and have an NG tube placed down my nose and into my stomach to empty the contents…a procedure I’ve had done 3 times now, so I’m a pro at swallowing the NG tube now.

I went ahead and had the surgery, and for what it was done for, it worked extremely well. I’ve had no problems with heartburn except a very rare exception every now and then. Unfortunately, I suffered nerve damage in my sternum area where an incision was made to hold one of the instruments in the surgery and which caused me tremendous pain for many months afterwards. I was drugged up on morphine pills (plus pills for nausea and itching) for so long that my friends could barely recognize who I was. It got to the point that I had to be hospitalized to wean off the morphine because I was hallucinating that I could hear a band playing, and I kept looking behind my computer to try and find them. The doctors were at the point they were going to crack open my chest to try and find the problem when the Thoracic Surgeon suggested trying Gabapentin for nerve damage and it worked. Unfortunately, that 11 months of pain and misery put me into such a Fibro flare that I don’t think I’ve ever properly recovered from it.

I went into quite a depressive spiral during that time. I was off work for months…I tried to go back but had to take more time off. I missed working…it’s always been my passion and to not be there with my team was hard. I was missing church and my Lifegroup, and missing my friends and times of social gatherings…I was just miserable. Eventually, I got better – well enough to go back to work, etc. but I’ve never felt 100% again. A year later, my body decided to go rogue on me and I ended up in 2006/2007 having 3 separate surgeries in a 6 month period of time; my left ovary burst, my gallbladder gave out and then my right ovary burst, putting me into surgical menopause (I’d had my uterus out at age 28). That in itself was traumatizing, so again, my Fibromyalgia kicked into high gear and I was flaring badly. I had one more surgery in 2007 that actually had to be cancelled while I was on the operating table as the Anesthesiologist couldn’t find a vein for the IV. I have tiny crappy veins and I’d been left waiting all day without liquid. No wonder.

So, my poor body went through the wringer during that period between 2006-early 2008 and I blamed myself so much. I don’t know why, there was nothing I could have done to prevent anything, but still…it just seemed like I was constantly ill or recuperating and I was never able to go out with Ray when he wanted to. All I wanted to do was sleep or rest and I felt like the worst wife in the world. All the chores were left for him, I had no energy to do anything…and yet he never once complained. He truly is the most remarkable man, and I know God picked him especially for me. Ray takes the best care of me and I am so grateful.

When I read the words that Tom Seaman posted, I was reminded of all of this all over again. It’s easy to get into a “blaming yourself” mindset but nothing we’ve done is our fault. Fibro picks its own victims (ooh, I hate that word) and we have to live with the consequences. I know we all try our best to live with it and make the most of life, but we have a tendency to try and fault ourselves I think. We feel guilty that we can’t be there for our families, our friends, our employers, our volunteer work. We drop hobbies and things we enjoy because we just don’t have the energy to do them anymore. We see others picking up the slack for us, and there can be a sense of shame. And often, we retreat because depression kicks us hard.

Today, I say NO MORE!  We have been dealt an ugly hand, but IT IS NOT OUR FAULT. If you are feeling these feelings of guilt, shame, anger, depression or other negatives, STOP. Nothing you have done has caused your Fibro. If you are living with Chronic Pain or Chronic Fatigue, accept it. It is what it is. You can’t change it so you have to accept it. The only other alternative is to wallow in misery and I don’t think that’s an acceptable alternative…and neither do you, honestly. Take Tom’s words to heart, and my words too…

THERE IS ALWAYS HOPE!!!!

Lamenting The Love Of The Bath

One of the curses of having Fibromyalgia is something called “allodynia”.
 
Allodynia (Ancient Greek άλλος állos “other” and οδύνη odúnē “pain”) refers to central pain sensitization (increased response of neurons) following normally non-painful, often repetitive, stimulation. Allodynia can lead to the triggering of a pain response from stimuli which do not normally provoke pain.
 
Why am I telling you this? Well, I used to be a bather, rather than a showerer because it had become too exhausting to “stand” in the shower and even if I used a tub chair, I hated having the water hit me. It was painful and to try and explain to people that having a shower hurt me was also painful. Seriously, how can a shower “hurt”? Well, the same way an electrical shock can hurt. For most people, it’s nothing…a tiny nuisance. For me, it’s an actual pain that shoots out of my finger like a firecracker has hit me. My husband Ray couldn’t understand this for the longest time, but once he received some type of electrical shock, I said to him “that’s what static electricity feels like to me” and he finally got it.
 
Back to the shower though. The water hitting me felt like a million shocks on my body, but bathing was also impossible. It had become far too difficult to get out of the tub in a bathing position even with grab bars, so showers became the norm. When they happened.
 
I have extreme difficulty lifting my arms above my head so washing my hair is a task. I’ve finally taken to doing it in the bathroom sink. Even though I still have to bend, I can stop and stretch a bit without water hitting me. And while in the shower, I use a long-handled scrub brush for legs and feet and I prefer it when hubby has to come and scrub my back for me – I can barely reach it with the brush (I NEVER shower when I’m alone at home).
As for shaving my legs…well, let’s just say that the sasquatch look is quite popular here and I wear a lot of long dresses.
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Thank God Hubby doesn’t care – and he really doesn’t. He cares about my health and how to best help me, and that’s all that matters. I did recently buy a cheap men’s 3 head electric razor for my legs which makes a huge difference. I like the convenience of it – I can use it quickly if I’m going out and need bare legs and it charges quickly as well.
 
I have to be honest though, I really miss having a luxurious bath.
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Oh, what I would give to be able to enjoy the showering/bathing experience of the past!! The soaps and lotions and bath bombs and pouffes and the like. Now, I just desperately want to get in, get clean and get out so I can collapse naked on the bed to let my heartbeat slow down and to let my shaky limbs start feeling strong (haha) again. I lay there hoping my temperature will start to regulate itself and then go from overheated to the perfect temperature, to throwing the blanket over chilled me in the space of 30 seconds.
 
Yes…I wish that I could enjoy the simple pleasure of a shower or bath, but the best I can do is to try not to put it off for too long like 5 days. Or 7. Or 10. And I also need to start buying stock in dry shampoo and baby wipes. Enough said!
Remember…there is always hope!

Fun and Games

Things have been a little too serious here lately, so it’s time for something fun.

Grab a pen or pencil and ask your children these questions about you. I’ve received a reply back from my son Troy (age 36) and I’m waiting for my daughter Ashley to do hers (age 35) so you can have your adult kids do it too. Their answers may surprise you!!!

WITHOUT ANY prompting, ask your child(ren) these questions and write down EXACTLY what they say. It is a great way to find out what they really think. If you decide to post to Facebook, etc., make sure you put your Child’s age down. The little kids’ answers are always so funny!

Child’s age:

1. What is something mom/dad always says to you?

2. What makes mom/dad happy?

3. What makes mom/dad sad?

4. How does your mom/dad make you laugh?

5. What was your mom/dad like as a child?

6. How old is your mom/dad?

7. How tall is your mom/dad?

8. What is her/his favorite thing to do?

9. What does she/he do when you’re not here?

10. If she/he became famous, what will it be for?

11. What is your mom/dad really good at?

12. What is your mom/dad not really good at?

13. What does your mom/dad do for a job?

14. What is your mom’s/dad’s favorite food?

15. What makes her/him proud of you?

16. If she/he were a character, who would it be?

17. What do you and your mom/dad do together?

18. How are you and your mom/dad the same?

19. How are you and mom/dad different?

20. How do you know mom/dad loves you?

21. What does your mom/dad like most about dad/mom?

22. Where is your mom’s/dad’s favourite place to go?

23. How old was mom/dad when you were born?

24. What is mom’s/dad’s favourite thing to say?

Have fun with this and remember…

There is always hope!

Conditionally Speaking…

Welcome back!

I’ve talked specifically about a few of the conditions I live with, but I thought today I’d give you an overview of the 13 different health issues that make up who I am. Some are serious, some are just an inconvenience, but all of them are a part of me. Here’s the list:

  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Fibromyalgia / Myofascial Pain
  • Osteoarthritis (in all my major joints)
  • Forestier’s Disease (aka D.I.S.H.)
  • Type 2 Diabetes (on insulin)
  • Trigeminal Neuralgia
  • Bipolar Disorder
  • Gastroparesis
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain
  • High Cholesterol
  • Brachydactyly Type E
  • Raynaud’s Disease
  • Hypothyroidism
  • Vulvar Intraepithelial Neoplasia 3 (VIN 3) – now healed

So I’ve talked about my Chronic Pain from Fibromyalgia and Osteoarthritis, and when I say I have arthritis in all my major joints, I’m serious. I have it in my shoulders, elbows, wrists and fingers, my cervical, thoracic and lumbar spine, left hip (right hip has been replaced), knees, ankles and toes. Some areas like my left hip and right knee are quite serious and will need replacing, but the rest I’ll have to live with. Meanwhile, my thoracic spine has a different type of bone condition called Forestier’s Disease or D.I.S.H., which stands for Diffuse (Widespread) Idiopathic (Of Unknown Cause) Skeletal (Referring to the Skeleton) Hyperostosis (Excessive Growth of Bone). It forms in the shape of a bone spur, but instead of a normal spur that could be removed, it looks more like melted candle wax on the spine, so nothing can be done about it. I also have regular bone spurs on my right hand – I had one removed from inside my pointer finger as it grew through a tendon, and there is a second one on the outside of my middle finger growing through the knuckle. Both have been very painful and interfere(d) with typing and writing. Of course, I have weird fingers anyway…which leads to another thing on my list.

Brachydactyly.  Pronounced Brackee Dack Til ee, there are several types of this disorder and I have Type E.  It’s described as such, from Wikipedia:

Brachydactyly (Greek βραχύς = “short” plus δάκτυλος = “finger”), is a medical term which literally means “shortness of the fingers and toes” (digits). The shortness is relative to the length of other long bones and other parts of the body. Brachydactyly is an inherited, usually dominant trait. It most often occurs as an isolated dysmelia, but can also occur with other anomalies as part of many congenital syndromes.

Brachydactyly.svg

I was born missing the bone as shown in Type E, but it wasn’t apparent until I was about 5 or 6 years old and the ring fingers on both hands stopped “growing”. Each one is about a half inch longer than my pinkie, and that’s it. When I make a fist, there is no knuckle formation either.  You can see the flatness in the photo beside my hand.

PamFingers2  PamKnuckles

People always think my ring finger is swollen, but it’s actually the extra skin that would have covered the finger if it had grown to full length. My feet are the same way as well:

PamToes1

I can’t actually bend any of my toes individually – if I try to bend them, they all bend at the same time.  The second and third toe are mildly webbed on each foot and then you can see how severely affected the “ring toe” is affected. That’s because of the missing bone in the foot, just like the ring finger. The pinkie toe is basically normal. Each foot is the same.

Now because this is a genetic condition, I was quite interested to see if my kids or grandkids would have the same thing, but no…I’m the only one who has presented with it. I was adopted at birth and always wondered if anyone in my birth family had it too. I was able to find my birth mom approximately 15 years ago, and again, I am the only one on her side of the family with this condition. She doesn’t know about my birth Father’s side, but I believe I may have tracked down a family member for him and I’m just waiting to see if she contacts me. His name is Arvay Bernath and he was born and raised in Nanoose Bay, BC on Vancouver Island. He dated my mom Bonnie Rebecca Anderson from Parksville, BC on the Island and they were engaged when she became pregnant with me. Her dad didn’t approve and so they broke up and I was put up for adoption. Arvay appears to have passed away in 1997, but from information, I found on MyHeritage.com there is a relative named Lily Bernath who started a search page. I left her my contact info, but she hadn’t been on the page since 2017, so who knows if she’ll get my info or not. At any rate, he or his family may or may not have Brachydactyly too, or I could just be an anomaly.

So, what else is on that list. Ah yes, the ever lovely Gastroparesis, which means (again according to Wikipedia):

Gastroparesis (GP also called delayed gastric emptying) is a medical condition consisting of a paresis (partial paralysis) of the stomach, resulting in food remaining in the stomach for an abnormally long time. Normally, the stomach contracts to move food down into the small intestine for additional digestion. The vagus nerve controls these contractions. Gastroparesis may occur when the vagus nerve is damaged and the muscles of the stomach and intestines do not properly function. Food then moves slowly or stops moving through the digestive tract.

Now, the way they determine if you have this or not is through something called a motility test. In my case, they wanted me off ALL of my meds first to make sure they weren’t contributing to the problem, so for 2 days prior to my test I had to quit my medications cold turkey. That included my meds for Fibromyalgia, my anti-psychotics AND my opioid narcotic for pain. Do you have any idea what going through withdrawal is like? It was horrendous. I had the shakes, the runs, I couldn’t eat or sleep, and for those 2 days, I alternated between thinking I was dying and wanting to die.

On the day of the test, I went to the hospital to where the Nuclear testing is done. I knew that I was going to be eating an egg sandwich with a radioactive tracer in it and that tracer would be monitored through a series of special x-rays, but I explained to the nurse that everything I ate was immediately running right through me like water. She was so sweet…she “reserved” me a private bathroom, brought me my sandwich and told me to eat as much as I could while I sat there. Talk about embarrassing!!! It’s embarrassing writing about it!!! But, I managed just over 3/4’s of it, which she said was enough. She brought me into the x-ray room where there was a gurney to lay on, and then gave me a warm blanket. The first pictures were taken every 2 minutes, so I just sat. Then they took them every 5 minutes apart, then 10 minutes apart, then 15, then 30 and finally 2 pictures 1 hour apart each. In between, I slept on the gurney, and my nurse brought me as many warm blankets as I wanted. She also brought me a cold wet face cloth for my forehead. When it was all over, I gave her a big hug and thanked her for being so kind. Then I took my medications asap!!!!

The tests showed that I have a moderate degree of low motility so my food sits in my stomach for a long period of time before moving on to the intestines. This explains why I always look bloated and pregnant. There are medications that can be taken, but I’ve asked Dr. Leong if we can just hold off and wait on that for now. This is more of an inconvenience than anything right now, and I just don’t want any more drugs in my system than I absolutely need. If the problem becomes hugely bothersome, we’ll revisit it, but in the meantime, I’ll just try to watch what I eat, drink more water and try and exercise a bit more.

Which leads to Hypothyroidism. For a long time, I assumed that Chronic Fatigue Syndrome was the only reason for my constant exhaustion, as my Thyroid numbers always came back normal on blood tests done every three months. One day though, my thyroid went rogue and those numbers were crazy. I had been especially tired…like dragging my ass tired, needed toothpicks to keep my eyes open tired

DraggingMyButt

Oohhh, that is NOT a good look on me!!! Dr. Leong put me on meds and I could feel a difference in a very short period of time. On my next 3 month course of blood work, everything was back to normal, so now I take Synthroid on a daily basis for the rest of my life, to ensure I have a properly working system. So glad that was an easy fix!!

The other few things on the list are all fairly minor. I have had a number of pelvic surgeries over the years, so there is a lot of internal scar tissue left over that has attached itself to things like my bladder and bowel, etc. There are occasions when I move a certain way, and those adhesions stretch very painfully – it feels like velcro being ripped apart except it’s my body doing the ripping. It takes my breath away sometimes, it’s so painful, but it only lasts for a minute or two, then it’s gone. The High Cholesterol is managed easily with medication (too much ice cream!). The Reynauds is something that happens when my fingers and toes are exposed to the cold…they go bone white and lose sensation, so I have to be careful when getting things from the freezer or being in cooler windy weather, etc.

And finally, the Vulvar Intraepithelial Neoplasia 3 (VIN 3) which is now healed…well, we talked about that in the post entitled I’ve Got The Lady Garden Blues. 

So there you have it. Thirteen separate conditions with one healed and Chronic Pain is a part of 7 of them. It’s a tough road to walk, I have to be honest. I live with pain 24/7 and have for almost 30 years now. I’m going to do a separate blog post about my Fibromyalgia because that’s been my predominant pain for so many years, but suffice to say that you have to be mighty strong to live like this, to get through the day to day of actually living in pain. I know some people who just couldn’t. They tried so, so hard, but in the end, their pain was too much for them, and they took their own lives.

I’m a huge advocate for assisted suicide for people who live with severe, unretractable pain. We take better care of our pets when they are hurting than we do our humans, and I think that is just plain wrong. I believe every human has the right to choose to die with dignity and I wish our Government would get on board with this. I know things are happening, and we’re getting closer, but it’s not well within reach for everyone.

Thanks for indulging me and letting me share more about me with you. If you have any questions or comments, please feel free to leave them here. And remember…

There is always hope!

Talkin’ Bout My Ment-al Illness

Did you automatically sing that title as “talking bout my Generation”?  That’s what I was aiming for!

I want to talk about Mental Illness today and the meds I take. I’m not ashamed to say I have Bipolar Disorder but I know there is a huge stigma around having a mental illness and talking about it. There are far too many people who grew up believing you should keep things like that hush hush because it would ruin your reputation, and that of your family if you said anything. People were put away in homes and hospitals who were severely mentally ill, or stories were told about “crazy Aunt Gladys” or “weird Uncle Marvin” and you knew you weren’t supposed to either hear them or repeat them.

Things are changing thank God, and I’ve never been afraid to just come out and say “I am Bipolar” in conversation. It’s a part of me, so why would I hide it? It was actually a relief to finally have a diagnosis because then I knew what those manic highs and depressing lows were all about. Do I like the highs and lows? Sometimes. They can be exciting, and energizing and fun. They can also be ugly and messy and scary. But the overall thing about having BD is that it’s uniquely a part of me. Take it away, and I would be so different. Less courageous. Less outgoing. Less interesting. Less, less, less….

One difficult thing about having a mental illness is the issue of being on medications. What you’re trying to do is balance the chemicals in your brain called Serotonins. Finding the right balance is a tricky business and can sometimes take years. I know people who have been on up to 17 different medications at various times, just trying to find the right combo that works for them. I’ve been lucky in that I was put on Seroquel when I was first diagnosed and it worked well for me for a long time.

It wasn’t until late 2016 when I started experiencing the auditory hallucinations  – I could hear music when others couldn’t, and I knew something was going on. I saw a Psychiatrist to rule out any new mental illnesses, and then Dr. Leong recommended the MRI and EEG I’ve talked about in earlier posts. We also decided to switch the Seroquel to something new and that’s when I started taking the Abilify.

I was nervous about taking it at first because of the list of side effects. I am bolding the ones I’ve experienced so far:

Common Abilify side effects may include:
  • weight gain;
  • blurred vision;
  • nausea, vomiting, changes in appetiteconstipation;
  • drooling (mild, at night);
  • a headache, dizzinessdrowsiness, feeling tired;
  • anxiety, feeling restless;
  • sleep problems (insomnia);
  • cold symptoms such as stuffy nose, sneezing, sore throat.

Now, why can’t Drug Manufacturers automatically make a drug with weight LOSS as a side effect??  Why is weight GAIN always the big one listed (haha). Seriously…what are they putting in there…hot dogs?? Milkshakes?  Okay, I’d take it in milkshake form (I LOVE milkshakes!), but I just don’t understand this. It must be a filler of some kind. Then there’s drooling. What the hell kind of side effect is that??? DROOLING??? Who thinks these things up?

~~~~~~~~~~~~~~~~

“Hey Ron”

“Yeah Charlie?”

“Do ya think we should make people drool with this one?”

“Oh yeah…we haven’t added that one in a long time. I bet people miss that side effect…yeah, let’s add it”.

~~~~~~~~~~~~~~~~~

*snork*   Right!  Okay, so now, I’m fat and drooling. How else can we make this attractive? Oh, I know…let’s make me constipated too! And then we’ll make me super tired, but add in insomnia, so I can’t sleep!! Mwaaaahaaahaaahaaahaaaaa

WitchesBrew1

Yeah…that’s about what it feels like. Seriously, I don’t understand why half these side effects are considered acceptable, but we go ahead and take them, because the side effects are worth the overall benefit of the drug itself. And what benefit am I getting from the Abilify? Well for one thing. I have energy again. And an interest in life. I’m not spending 90% of my day sleeping. I’m doing the household chores again. I’m getting together with friends again – socializing. I’m still in chronic pain, but my brain is in such a better place that I’m managing my pain better. Could I go back to work in this condition? No,  not a chance. My pain and fatigue still wipe me out, and I can only manage small chunks of all of these things, broken up throughout the day, but the fact is, I am able to do them again.

I don’t know how long it went on for, but most of my days on Seroquel were spent either in bed sleeping or in my recliner, playing on the computer. I would aimlessly shift between Facebook and a select few other websites I frequent, like Pinterest, some contest sites and game sites where I enjoy solitaire or various slot machines (not for real money). I still do that now, but it’s in between all the other things I’ve found interest in again. I also tend to do a lot of online shopping. Too much, and this can be part of my mania cycle of BD as well. My husband never says anything as long as I record my transactions in our financial system. But I’m doing other things like crafting again, and I’m making cards again for birthdays and stuff, and I want to learn to crochet again (I was just starting to learn and then boom!, totally lost interest when I started having trouble with the Seroquel and didn’t KNOW I was having trouble with it).

Now, here is the list of SEVERE side effects of Abilify. Again, I am bolding the ones I’ve experienced so far:

Call your doctor at once if you have:

  • severe agitation, distress, or restless feeling;
  • twitching or uncontrollable movements of your eyes, lips, tongue, face, arms, or legs (very rare and only for a moment);
  • mask-like appearance of the face, trouble swallowing, problems with speech;
  • seizure (convulsions);
  • thoughts about suicide or hurting yourself;
  • severe nervous system reaction–very stiff (rigid) muscles, high fever, sweating, confusion, fast or uneven heartbeats, tremors, feeling like you might pass out;
  • low blood cell counts–sudden weakness or ill feeling, fever, chills, sore throat, swollen gums, painful mouth sores (I get inflamed tastebuds), red or swollen gums, skin sores, cold or flu symptoms, cough, trouble breathing; or
  • high blood sugar–increased thirst, increased urination, hunger, dry mouth, fruity breath odor, drowsiness, dry skin, weight loss    **oh LOOK! There’s my weight loss, but look what I have to go through to get it!! 😦

Because I have Type 2 Diabetes, I have to be extra careful in taking this medication. I need to check my blood on a more frequent basis, to make sure I’m maintaining optimum blood sugar levels at all times. I currently inject 14 units of insulin at night only and have done so for about 3 years now. If I notice that my sugars are going quite high on this med, we may have to change that up, and that will be hard for me. I like the benefits of this drug, and I’m not sure I want to start experimenting with other medications.

So…what about you dear reader. Do you have a mental illness? Do you talk about it if you do? Why or why not? Do you know other people who experience prejudice because of a mental illness? How are they treated differently? Do you stand up for them? Advocate for them?

It’s a scary world out there for people with mental illnesses. We never know for sure who our allies are or where we can feel safe talking about our lives and what we experience until we start talking to others. I make myself a safe haven. I talk about my mental illness so others know they can be safe and vulnerable around me. If you need someone to talk to, contact me.  Anything said to me stays private, even from my husband. If you’re on Facebook, look me up. Same with Messenger. Just put the words There Is Always Hope in the subject line, so I’ll know it’s not spam.

If you have anything you’d like to share here, please feel free to add a comment. I do moderate them, but only for spam…everything else gets posted. Thanks for reading and remember…

there is always hope

 

Furiously Happy – A Tribute

I’m doing a tribute today to an amazing woman named Jenny Lawson. You may have heard of her. She’s an incredible writer and the author of the books “Let’s Pretend This Never Happened”, “Furiously Happy” & “You Are Here”.

 

She writes about her own struggles with depression and man, can she write!!! Her sense of humour is incredibly warped and twisted (just the way I like it), she blogs as The Bloggess (thebloggess.com) and there are several Facebook fan groups as well, one of which I belong to. We are her Tribe. We get her. We understand what she goes through and experiences, and even if some of us don’t live with depression, most of us know someone who does. For me, it’s my husband.

I wrote this piece one day when I was feeling overwhelmingly happy that I had found this particular Tribe to call my own. Here goes:

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I live with several health issues that leave me in constant chronic pain: Fibromyalgia, Osteoarthritis in all my major joints, Myofascial Pain, Chronic Fatigue Syndrome, Forestier’s Disease, Trigeminal Neuralgia, Diabetes Type 2 (on insulin) and Bipolar Disorder. I had Total Hip Replacement on Feb. 7/17 (with my left hip needing to be done as well and possible knee surgery on my right knee later on) and am having a good recovery. I am still in pain, and always will be.

I used to think that my “furiously happy” would come when I no longer lived in pain. Its only been in the last year or so that I’ve come to realize that will never happen. I will NEVER be without pain…that’s just the nature of my body. And when I realized that there would always be the pain, I thought at first “then I will never truly be happy”. I have an amazing husband, whom I love beyond measure. I have 2 grown up kids that I still worry about and three grandsons that I never get to see because of distance. We keep in touch though with social media, and that’s a good thing, but it’s far from being furiously happy.

Because of my health, I had to give up a career that I adored…Admin Support at the Executive level as well as being a Certified Event Planner. I loved my job with every fibre of my being, but came to a point where I physically couldn’t manage it any longer, and with my chronic fatigue, would never be able to manage again. Everything in my life seemed to be about loss…losing a job, losing my hobbies, losing professional relationships, losing friendships, losing mobility, losing at life.

Hubby and I decided in 2013 to make a move to Vancouver Island from Calgary after the weather in Calgary became too much for my body to handle…too cold, too much snow, too long of winters, too icy…too, too, too. We moved here without a job for Ray or even knowing what our apartment looked like – we rented it sight unseen. Slowly, we started making Victoria our home – walking by the ocean, going for coffee or dinner at various places. I soon realized how much I loved it here, even though there were really no friends to share it with (two couples and one girlfriend and that was all that I knew – and even then we rarely saw each other).

One day, I found the Jenny Lawson book Furiously Happy. I have never laughed so hard in my life. I gave the book to Hubby to read and HE has never laughed so much…and he’s not one to show much emotion ever, good or bad. But he laughed and often. From there, I found her website and her other book and then all of sudden, there was THIS group. People like me. People who were struggling and depressed and suffering mentally and physically and I thought to myself “God, thank you for bringing me home”. Because I realized quickly that I seemed to be good at encouraging other people in their struggles, so I didn’t have to think about mine. I could offer advice or words of comfort, or just the right kitten picture and something would change for the good in that other life. And MY life felt better because of it.

And then I knew, the way that I became Furiously Happy was by being myself and sharing my life with those of you here who needed what I had to offer…a shoulder to cry on, a hug, some understanding, appreciation…whatever you want to call it. I became Furiously Happy because OF Furiously Happy. And now I have my Hubby and my family and my friends and my volunteering AND MY TRIBE!!

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Now, the reason I’m giving a shout out to Jenny today is that she has been undergoing a new treatment for her depression called Transcranial magnetic stimulation (TMS).  It’s described like this: (TMS) is a noninvasive procedure that uses magnetic fields to stimulate nerve cells in the brain to improve symptoms of depression. TMS is typically used when other depression treatments haven’t been effective.

Jenny started treatment 2 weeks ago…and people…IT’S WORKING!!!!!

I want you to go to her blog and read all about it. If you know anyone who is experiencing major depression in their lives and no other treatment has worked, then this MIGHT be an answer for them too. I admire this woman so much, and I’m so delighted that this is working for her, I simply had to share. Please go check it out, buy her books (you will laugh, trust me) and find your tribe if you haven’t already.

If you live with Chronic Pain, Chronic Fatigue, Fibromyalgia, or Invisible Illness of any kind, you can’t go through it alone. You need to find a support group. If you look me up on Facebook, I can introduce you to the Fibro group I belong to. We support everyone who is in pain. And if you’re a fan of Jenny Lawson and want to join the group on Facebook I belong to, use the contact page on the blog here, and let me know. And remember…

there is always hope

Something Strange in the Neighbourhood

I don’t know what is going on with my posts and why the spacing is a problem now.

If you notice anything weird in my posts, where the paragraphs aren’t separated properly or things like that, just let me know. On my computer, I see a problem, yet when I go into WordPress, everything looks fine, even when I switch over to HTML. And even if I refresh my page using CTRL + C, I still see the spacing problem between paragraphs.

I’m writing this post in HTML to see if it makes a difference and I’m putting a picture of these guys in it to see if adding a photo changes anything:

ghostbusters-36

It shouldn’t cause a problem, but hey…it’s me and my page and just like my body…who knows what could be going on. Maybe it’s a ghost and maybe I was meant to write this ghost post.

and wow…two posts in a single day from me, both of them barely worth reading. I’ll try and work on my content for you. I’m sure I can do better. I’ll blame it on Dorie, my cat. She’s laying so close to my arm, I can barely type never mind think. Don’t believe me?

DorieandPam''sArm

Remember…there is always hope!

ps: it looks like I need to write in HTML all the time…it worked just fine!

😉

Ranting and Swearing…Grrr!

Back in my post of Two Months Later…and counting, I mentioned I was having problems with my Achilles Tendon. Well, I finally made an appointment with a Physiotherapist to have it looked at, as the pain and tenderness has been increasing. And what did I find out? It’s not just tendonitis in the Achilles Tendon, oh no….I have to have Bursitis on top of it, AND it’s most likely there are tears in the tendon itself.
Fuck
Rod is the therapist I’m seeing, and he gave me all the information to explain his findings. He could tell via massaging the tendon and my reaction to the pain that it spread beyond the tendon and into the bursa as well. He did 20 minutes of acupuncture with 4 needles (what is it with me and needles???) and will do that for a few weeks, plus he showed me some stretches like calf raises and modified lunges he wants me to do, to stretch the tendon out. If I want a permanent solution though, he said it’s most likely that I’d need surgery to repair the tendon. Otherwise, the only other option is to just put up with the pain.
Like, I don’t already live with enough pain? UGH! Here Pam…have another heaping helping. Go on…there’s plenty more where that came from apparently. Plus I haven’t even dealt with my shoulder yet -I think I’ve torn the Rotator Cuff. I have an appointment in August to see Dr. Winston, my Pain Doctor, about that on a more official basis. I mentioned the pain last time I was there (for the Synvisc and Botox), as I couldn’t even put my right arm behind my back, and I still can’t. I can’t raise it above my head or beyond straight to the side – it just won’t move any further. And yes, there is pain. And numbness.
Who does this??? Who has a body like this, that just falls apart for no apparent reason???
I’m done. I am simply done. I am worn out physically and I’m sick and tired of things breaking down in my body. I’m scared to ask “what’s next” because there’s going to be a “what’s next” and I’m not sure I’m prepared to deal with it.
Oh yeah – I have my Brain MRI on Friday, June 22nd at 6pm.
Great.

There is always hope!