Chronic Illness and the Holidays

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As we move into December and the start of the Festive season, it can be a time of great stress for those of us who live with Chronic Illness. I wanted to share some strategies for getting through this time of year without increasing your pain or stress levels.

Here are some of my top suggestions:

Plan In Advance

As Christmas, Hannukah and New Years get closer, it’s a good idea to start thinking about what you’ll do and where you’ll go. Are there family traditions that can be changed in regards to who hosts events? If it’s been you in the past that hosted a large group, perhaps someone else could do it this year and you could be the guest. Start to prioritize the things you most want to do (attend a Santa Claus parade, a Festival of Lights, Religious Services, visiting certain friends, etc.) and then build your schedule around that.

Keep Managing Your Chronic Illness

Once you have a schedule in place, you can start building in rest days before and after events. Don’t forget about the day of the events themselves and how you need to ration your energy to have the greatest chance of being able to participate.

Go to your scheduled doctor’s appointments and take care of yourself. It’s so tempting to cancel these things at this time of the year, but don’t. Make sure you are taking your medications as prescribed. If you have special dietary needs, keep them in mind when eating out and preparing meals. Now is not the time to go off a medically necessary diet.

Make Lists

Make lists of things you need or want to do. Prioritize those lists. Delegate and let some things go. Take advantage of online shopping to save your energy.  And don’t be a perfectionist. There’s no room for perfectionism in a chronically ill person’s life.

Pace Yourself

If you know you have a party to go to in the evening, that morning is not the time to scrub out your tub. This is another area in which I struggle. Pace yourself throughout the day and over a period of several days. If you are planning on going shopping with friends on Saturday, plan on Friday and even Thursday being light activity days.

Be Honest

If you’re going somewhere else to celebrate and you have energy limitations, let your host know that you may not be able to participate fully in the activities. If you aren’t able to host at your house like usual, ask others to chip in and host instead. Being honest with people in your life about your limitations can be helpful for avoiding hurt feelings later. Think through what you need to explain to others ahead of time to allow the events to go smoothly.

Enlist The Help Of Your Spouse Or A Friend

Enlist the help of your spouse or a good friend to be part of your team during the holiday festivities. This should be someone who knows you well and will be able to read your responses to situations. This person will help you feel safe in the situations you’re entering and will watch for any indication that you aren’t feeling well.

My husband Ray, serves in this role for me. Another friend or family member could also do this. Basically, Ray notices when I’m getting worn down and my health is going downhill. He’s particularly aware of my flagging energy, and will often ask me how I’m doing to gauge whether it’s time to leave. I also know I can tell him I’m ready to go and he’ll take me home immediately if I need to leave.

Be Okay With Your Plans Changing

This one is a big part of normal life with chronic illness. Flexibility is important because things can change on a moments notice when health issues are a concern.  Even if you have everything planned and scheduled, do yourself a favor and release expectations. If you are religious, prayerfully plan your schedule but then hold those plans loosely. Ask God to cover you with perfect peace in whatever situations you may encounter with your health over the holidays.

Ask For Help

Ask for specific things. I don’t like to depend on anyone for help, but if it means making the holidays more manageable, I think it’s worth it. Sometimes, people will offer to help, but they don’t say what they are willing to do. Having a list ready with ideas of what others can do for you will come in handy when people make those kinds of offers. Do you need help with laundry? Running errands? Housework? How about help with wrapping gifts? Think about all of your regular and holiday tasks and delegate some of them to family members and willing friends.

Connect With Others

Try to make time with friends you might not otherwise get to see, even if it’s just for a short while. Have a quick get together at a coffee shop, chat with a girlfriend about a sappy Christmas movie you’ve both watched. Make an effort each day to reach out to someone. Text, Facebook, instant message, make a phone call. You don’t have to carry on an hour-long conversation, just a brief connection can be enough.

Find “Me” Time

Build in some time just for yourself during the holidays to read, craft, rest or do whatever else will help to give you some “me” time. It’s important to recharge your batteries. If being surrounded by people is what energizes you, then do that…it’s all about what makes you feel good.

Make Time For Your Spouse Or Significant Other

It’s so important to carve out time for the two of you. With all the busyness going on around you,  communicating can sometimes take a backseat, especially if you aren’t feeling so well. Be honest about how you are feeling and ask for help when you need it. Try to sneak in a few inexpensive “dates.” Drive around and look at the Christmas lights, stop for some hot chocolate, attend a Christmas program together. Just enjoy each others company.

Laugh As Much As You Can

This one is one of my favorite pieces of advice. Laugh. Just do it. I’ve found that no matter how horrible I feel, laughter can be a source of medicine for me. Laughing helps lift my spirit and makes me feel more alive. Try to enjoy yourself while you celebrate the holidays, and be sure to include laughter in your days!

Remember The Reason For The Season

It’s so easy to get caught up in the baking, partying, shopping, decorating, etc., but that’s not really what it’s all about. If you are a religious person, keep attending church services and go to the special holiday programs. Listen to religious Christmas songs along with the pop tunes. If you aren’t particularly religious or are a nonbeliever, meditate, attend holiday community events, and enjoy finding ways to nurture your own spiritual side.

Remember….There Is Always Hope

Let’s Find Out If Fibromyalgia Is Real.

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 IS REAL.

Here are just some of the MANY symptoms that people with Fibro have reported experiencing:

Fibromyalgia-Signs-Causes-and-Treatment

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.

Research has now shown that Fibromyalgia is NOT an inflammatory condition like so many doctors first thought. 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. This causes widespread pain throughout the body that can be felt in many different ways, and these include the various symptoms shown in the chart above.

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!

Living Well With Fibromyalgia

How do you Live Well with Fibromyalgia? When your body hurts all the time because of this painful condition, it’s hard to remember to do things like exercise and eat well, but these are critical components of staying well. First off, let’s look at what Fibromyalgia is.

Fibromyalgia is a condition that causes pain, fatigue, and tender points around the body. It can be hard to diagnose because many of its symptoms are similar to those of other conditions. It can also be hard to treat. That’s why it’s important to see a doctor who has experience treating Fibromyalgia. Medications are available to help alleviate some of the pain you might be experiencing, but there is no cure for the condition and a lot of what makes you feel better will come from the things you do for yourself.

 

symptoms-fibromyalgia-600
And what are those things? To start with, eat a well-balanced diet, make sure you’re drinking enough water to stay hydrated and try to do some gentle exercise every day.

Diet:

1. Aim for a well-rounded diet

Eating a balanced diet is a good idea for anyone, regardless of whether you have fibromyalgia. That diet should include fresh fruits and vegetables, whole grains, healthy fats, low-fat dairy, and lean protein, such as chicken or fish. Avoid unhealthy foods, including anything processed or fried, and excessive amounts of saturated fats. Also, limit the amount of salt and sugar in your diet.

2. Eat for energy

Fibromyalgia can make you feel tired and worn out. Eating certain foods can give you more energy. Avoid sweets, which will only give you a quick sugar boost. Your body will burn right through them, and then you’ll crash. Instead, eat foods that will give you more energy to get through your day. Combine protein or fats with carbohydrates to slow down their absorption. Choose fresh, whole foods high in fibre and low in added sugars, such as:

  • almonds, walnuts and other nuts and seeds
  • broccoli
  • beans
  • tofu
  • steel cut oatmeal
  • dark leafy greens
  • avocado
3. Go Vegetarian or Vegan

A few studies have looked at how eating certain diets affect fibromyalgia. There’s evidence from studies done that eating a vegetarian or vegan diet, which is high in plant antioxidants, might offer some symptom relief.

4. Maintain a healthy weight

Another benefit of eating a healthy diet is that it can help keep your weight under control.  People who had been on a weight loss program had less pain and depression, fewer tender points, and they slept better after taking off a few pounds. Studies suggest that weight loss can be an important part of fibromyalgia treatment.

 

Here are some of the best foods to eat for people with Fibromyalgia:

FOODS HIGH IN ANTIOXIDANTS:

  • Kidney beans
  • Dark chocolate
  • Pecans
  • Artichokes (boiled)
  • Cilantro
  • Berries (blueberries, cranberries, blackberries)

FOODS HIGH IN AMINO ACIDS:

  • Red meat: lean cuts of beef or pork
  • Poultry: chicken or turkey breast
  • Fish: halibut, tuna or salmon fillet
  • Dairy: non- and low-fat cheese, low-fat yogurt
  • Plant-based proteins: quinoa, tofu, soybeans

FOODS CONTAINING COENZYME Q10:

  • Organ meats (heart, liver, kidney)
  • Beef
  • Soy oil
  • Sardines and mackerel 
  • Peanuts

FRUITS WITH LOW GLYCEMIC INDEX:

  • Apples
  • Berries
  • Cantaloupe
  • Peaches
  • Citrus

All of these foods are great for the body whether you have Fibro or not so why not incorporate them into your diet and see the difference they can make. The healthier you are, the better able you are to fight Fibromyalgia or any other auto-immune disorder you might have.

Exercise:

Will exercise make you hurt more? Some muscle soreness is common after exercising in the beginning. But ultimately exercise should relieve fibromyalgia pain, not aggravate it. Try these tips: Start off small and build slowly. Massage or apply heat to sore muscles before exercise and apply cold after.

1. Keep it simple, doing activities such as walking, Aquafit (easy on the joints and muscles), or bicycling (stationary is fine).

2. Use light weights if you can to keep your muscles toned and at the very least, make sure to stretch several times a day.

3. There’s nothing worse for a Fibro body than to sit or lay down all day because your muscles stiffen up even more than usual and it takes even more effort to relax and loosen them. Do some simple stretches 3-4 times a day and work to expand on them as you get stronger.

So there you have it, some simple tips for Diet and Exercise that should help everybody but especially those with Fibromyalgia. Let me know your thoughts in the comments.

There Is Always Hope

 

Exercising With Fibromyalgia

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I belong to a Facebook group called the Fibro Blogger Directory and we’ve been challenged to send in and answer questions relating to Fibromyalgia in the month of November. One of the members asked this question:

Can you please help explain how I can get started with exercising – I want to but can’t get up off the lounge most days and can’t even do all my housework.

From Fleur in Pasadena

Let’s start by talking about something called “Fear of Pain”

If you’ve ever attended a Pain Management course, one of the first things they talk about is the mechanism of Pain – and the fear that comes with having pain. We’re afraid that pain is our body telling us that something is wrong and more pain means more is wrong. That’s not always the case though and the trick is determining what is “bad” pain and what is “good” pain. Exercise is generally considered to be “good” pain because it’s not causing further harm to your body. Your mind needs to be convinced that what you are feeling isn’t more harm, but simply a response to the muscles and tendons being used in a way that you’re not used to. No actual damage is being done, so while you may need to start slow, exercise is encouraged when you have Fibromyalgia. In fact, the worse thing you can do is to remain sedentary as that causes your muscles to atrophy.

There are simple moves you can do to get started on an exercise program at home that will be easy on your joints yet still give you a workout. As always, make sure you get your Doctor’s approval first.

Start with simple Stretches:

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Move on to Squats, Wall Push Ups and Bicep Curls (with or without light weights)

squat1003-wall-pushup-1441032989Bicep-Curl

Finish off with walking, swimming, Aquafit, or Bicycling. Even walking one block a day is a good start – add an extra block as you grown stronger, or an extra lap in the pool. The goal is to move just a little bit each day (i.e.: do 1 squat a day for a week then try 2 the next week).

Nordic Pole walking is extremely popular and works your upper and lower body while giving you stability while you walk:

NordicPoleWalking

The added benefit is the more you do, the more you’re capable of at home. Doing the dishes, sweeping the floor, folding laundry – they all count as movement and exercise as well. I’m not saying you need to run a marathon or do everything at once, but start slow, and realize that yes, you might feel a bit more pain in the beginning, but it’s simply your body getting used to something it hasn’t experienced for awhile. Give it time to adjust and you’ll see a difference before you know it. It takes 21 days to make a habit so give yourself 3 weeks before you “give up”. I’m willing to bet that if you’re honest with yourself and you don’t cheat, you’ll notice a positive change at the end.

There is always hope.

Turning Shame to Victory

I should on myself today.

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As a person living with Chronic Pain from Fibromyalgia and a host of other conditions, I tend to live with a lot of shame. I blame myself for not being able to keep up with the chores around the house that I should be able to do. I blame myself for not being able to work as an Administrative Specialist, a job I adored. I had a pity party about a lot of things as I stared at the dust on the TV stand. That’s right…I should upon myself today. I do it often. Too often.

Most people with Chronic Pain do the same thing. When we lose the ability to stay on top of the chores we used to do easily before, we start to feel guilty and ashamed. Dishes pile up, laundry goes unwashed, showering and personal grooming falls by the wayside and moving from bed to couch often becomes our biggest accomplishment. It’s not that we want to feel this way, but pain and the side effects of medication often make us this way. Most of the medications we are given include fatigue as one of the side effects. Others include weight gain, which can slow us down tremendously, nausea, constipation and/or diarrhea, dizziness, and other unpleasant things.

And that brings up another issue. All of these side effects do little to help us feel pretty. In addition to feeling pain and fatigue, we’re often left carrying extra weight so now we feel even less attractive than before. It’s a “damned if you do, damned if you don’t” situation.

So how do we get over “shoulding” on ourselves. We feel like we should be able to keep up with the chores around the house, while we’re still taking care of making dinner and watching the kids and staying on top of their activities and doing everything else expected of us, plus making sure our spouse’s needs are met.

What happens when you live with a spouse who expects you to manage everything exactly like you did before you became sick? A spouse who doesn’t believe that you’re really ill and who thinks it’s all in your head? What if you live without a spouse – if you’re a single parent with no support? Who takes care of you?

In order to find victory in the midst of this shame, try answering some of these questions*, being as honest as you can.

  • What three words/phrases best describe you in a POSITIVE way? Don’t settle for neutral or slightly positive words to describe yourself. Be bold.
  • What do you do best? Everyone has unique talents and abilities — find yours by taking an accurate inventory of your life.
  • What is your biggest accomplishment in the last year? If fibro and depression have been a longstanding part of your life, you likely feel that the last year has been void of any accomplishments. Look deeper — achievements come in all shapes and sizes. Depression works to minimize your triumphs, but shedding light on them magnifies their impact.
  • What are three successes in your life? When you look at your lifetime successes, you begin to see how effective and valuable you can be. You understand your value and build your self-esteem.
  • What are you working on? Having goals and direction in life limits depression. Completing those goals adds another accomplishment to your list and boosts esteem.

Fibromyalgia may change many things in our lives, so it’s important that we remember to find the positives and celebrate them. No more shoulding on ourselves!

So, I’ve decided to give up the guilt about what I’m NOT able to do around the house. I’ve even found new hobbies and activities that I’m passionate about and that I’m actually good at! I’ve become a volunteer for an organization in BC, my home province in Canada, that uses Patient Partners to work with Health Care organizations to help make real change in how health care is delivered. The Patient Voices Network has given me opportunties to speak in front of large crowds, attend educational events and become part of several committees. I’m careful to choose to become engaged according to how I’m feeling and I don’t take on engagements that require weekly participation. Most of what I do involves 3-4 hours of my time per month which is manageable. Twice I’ve had to regretfully pull out of engagements that became too involved for me to manage. Even at the last conference I attended which lasted for 3 days, I was able to build rest time into the daily schedules. I wouldn’t have been able to manage otherwise.

That being said, I don’t want anyone to think that I’m underestimating how awfully painful it is to be forced to change yourself or how hard it is to find new passions to give you a sense of purpose. These are not simple to apply or instant fixes. Please don’t think I’m minimizing the pain of the loss. I want you to know that I think you’re incredible because of the fact that you’ve survived those things and have continued moving forward, no matter how slow. That is victory!

Even when you’re sick and you haven’t found new activities or even if you can’t get out of bed, what I just said about you being incredible is still true. You’ve survived so much and you’re still here fighting! I mention finding new things to do as a way to better self-esteem because I know it’s something helpful when possible, but there are so many things I feel are more important and that have been more fulfilling for me.

Being sick has forced me to learn a lot of lessons that other people might not ever learn – lessons about patience, how to deal with pain and difficulties with grace, good humour and empathy. I’ve learned that the little things are often the big things in life.

All That Matters

It’s the Little Things That Matter
They’re the things that mean a lot
They’re the things that I can count on
When I’m giving things a thought

Oh there’s lots of big grand gestures
That are meant to mean big things
But in the end, they aren’t the ones
That tug at my heartstrings

I prefer the smaller hidden ones
The things that seem quite shy
The little acts that are given out
Not meant to catch your eye

It’s the little things that matter
That make a quiet sound
I love them best from all the rest
They make the world go round

Also, I think I understand more about pain and can truly empathize with others who are hurting. I feel like I can truly help people because of the pain I’ve experienced. I don’t know about you, but I think that’s pretty darn cool. And I feel like it takes immense strength to not only survive chronic illness, but to continue appreciating life and showing love to others when in constant pain. It’s also taken strength to rebuild myself and my self-esteem. I have to give myself credit for that. And finally, as much as I wish I was healthy, I fight for my life every day and I’ve won every single time. If that’s not victory then I don’t know what is! And the last thing I know is that if I’m capable of all this…you are too.

There is always hope

 

 

 

* https://fibromyalgia.newlifeoutlook.com/self-esteem-fibromyalgia/

Interview October – Frank

Today on our very last Interview October, we’re meeting Frank Rivera. Here is his story:

Frank’s Bio…  

Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, was a Global Genes RARE Foundation Alliance Member and was an Advocate, an ambassador for The EveryLife Foundation and a Working Group Member. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raise awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. In 2017 Frank was named Brookhaven advocate of the year. Frank also is an advocate for “Right to Try” even being interviewed by NBC Nightly News this year.

Chronic illness(es)/disabilities I have… 

Sarcoidosis, Sjogren’s Syndrome, and Parkinson’s and IBS

My symptoms/condition began… 

I was misdiagnosed in 2004, with Lung Cancer. I went through 4 years of chemotherapy and radiation while living in Florida. After the 4 years, I was told I was in remission. In 2011 after moving back to New York, I had problems with my IBS. While in the ER room they took a CT scan of my stomach and part of my lungs were shown in the CT Scan. They found more masses in my lungs. They took a biopsy and said I had Sarcoidosis. I ended going to Mt. Sinai Hospital to their Sarcoidosis clinic in Manhattan. They got my past tests from the hospital in Florida and found out that I had Sarcoidosis the whole time.

The hardest part of living with my illness/disabilities is… 

The pain and that they all are invisible illnesses. People look at me and they say well you look fine. But they don’t know what my insides feel and look like. Sarcoidosis has taken over 90% of my body. The only place I don’t have it is in my liver and kidneys.

A typical day for me involves… 

Everyday I never know how I am going to feel. So there is no real routine. I am on permanent disability. The only thing I do every day I wake up unless I can’t get out of bed is make sure both my wife and daughter have what they need for work and school respectively. I make them their lunch as well as breakfast. After that, I am too tired so I take a nap. Then since I run a non-profit organization I check my emails to see if anyone needs help. If not most of the days I rest. This disease has taken the energy out of me. In April I was downgraded from chronically ill to terminally ill. I used to travel to raise awareness for Sarcoidosis and Rare Diseases. I no longer travel far due to my body not being able to handle the travel and the long days in meetings

The one thing I cannot live without is… 

It may sound funny, but the one thing I need every day is my one cup of coffee every morning.

Being ill/disabled has taught me… 

To value life. It has told me to not sweat the small stuff. I have learned that living each day as the best you can. I also have learned you can’t please everyone so you need to please yourself first or you won’t be able to please others.

What advice would I give someone recently diagnosed… 

Be your own best advocate! Be involved. Learn about the disease

My support system is…

I would not be anywhere without my wife Diana and my daughter Savannah who is 15 going on 30. They have been there for me physically, emotionally and most important mentally. 3 years ago I thought about committing suicide due to the pain. I would have done it if it wasn’t for my wife and daughter. I ended up putting myself in a 72-hour hospital watch for suicide prevention.

If I had one day symptom/disability-free I would… 

I would go away with my family to the beach. That is my favourite place but now since I have Sarcoidosis I haven’t been able to go that much at all.

One positive of having a chronic illness/disability is…

There are actually two positive things that have come from having these diseases. The first is the friends I have met that have the same diseases as I do. They understand what I am going through and I can talk to them about it. The most important positive for me is I knew I was strong, but I never knew how strong I was until I have been with this disease. I have fought through things I never would have thought I could. My motto is ” I have Sarcoidosis and Parkinson’s but THEY don’t have me!”

My links are:

www.sarcoidosisofli.org

https://wordpress.com/view/lifeasararepatient.blog

 

Interview October – Maya

Today on Interview October, we’re meeting Maya Northen Augelli . Let’s get to know her better:

MayaNorthenAugelli

Introduce yourself and tell us a bit about you…  

My name is Maya and I’m from Philadelphia, where I live with my husband and our dog. I run a travel planning company, and also work with a local consulting company. I became a mental health and chronic illness advocate in 2009, after being diagnosed with a relatively rare mood cycling disorder. When I’m not working or advocating, you can often find me traveling, hiking or otherwise enjoying nature, reading, writing, or doing yoga – in fact, I’m just starting Yoga Teacher Training this fall!

Chronic illness(es)/disabilities I have… 

I have Rapid Cycling Cyclothymia, a rare mood cycling disorder that’s similar to, but technically “less mild” (in quotes because it definitely doesn’t feel mild at times) to Bipolar Disorder. I also struggle with anxiety as part of this disorder, though not technically diagnosed with a separate anxiety disorder. In addition to my mental health condition, I  battle IBS and Migraines

My symptoms/condition began… 

I am told I was most likely born with cyclothymia. I started exhibiting symptoms of hypomania as early as two years old, though of course they didn’t know what it was at the time. Symptoms progressively increased in frequency and intensity through my teen and early adult years. I was finally diagnosed just shy of my 30th birthday. The migraines I have been getting since I was a teenager – tough to really say when they started, but I can definitively say I can’t really recall a time when I wasn’t prone to migraines. They’re not continual, but I have consistently gotten them at least a few times a month since I was a teen. The IBS symptoms began around the age of 23, and I was diagnosed shortly thereafter.

My diagnosis process was… 

I’ll speak mainly about my cyclothymia diagnosis process here, as they others were pretty straight forward – went to the Dr, was referred to a specialist, had a couple of tests (colonoscopy/upper & lower GI tests for the IBS) and was diagnosed.

The cyclothymia diagnosis was trickier. I’d been seeing therapists on and off since college. I had only found one I’d really trusted, but long story short, at the time my symptoms weren’t as prominent, and I was more seeing her post-divorce than for my specific mental health symptoms. In the summer of 2009, my GP put me on a low dose of antidepressants, which at first helped, but soon made me feel worse. In August 2009, I was hospitalized for two days with what I thought were non-stop anxiety attacks. The hospital increased my depression medication, and I felt worse. When I got out of the hospital, I went to the one therapist I’d trusted from past years, and we began working through things – including the fact that the medication was making me worse. I even brought my mom to a session, in which she described the symptoms I’d exhibited as a very young child (since I couldn’t quite as accurately describe them, having been a toddler when they started). It was during these visits that I was finally diagnosed with rapid cycling cyclothymia. My therapist explained that the antidepressants made me worse because I cycle so rapidly that basically, by the time the medication that’s supposed to “lift” my mood (for lack of a better phrase) hits my system, I’ve already cycled up, and the effect is compounded. So in essence, the antidepressants were putting me in almost continual hypomania (what I had thought were anxiety attacks). She subsequently brought me down off the antidepressants and we began mood stabilizers.

The hardest part of living with my illness/disabilities is… 

It’s two fold for me. One is the feeling of lack of control over my brain. I feel like I often can’t trust my own mind – because I cycle so quickly, literally every day is a complete surprise. I never know how I’ll wake up feeling (depressed, hypomanic, anxious, none of the above), and how often it’ll change each day. Not being able to trust my own brain, or feeling like I can’t, massively affects my self-esteem and often makes me feel hopeless and worthless.

The second is the stigma. The fact that people think you can just smile, change your attitude, be more grateful, look on the bright side, or choose to not feel this way is awful. When this happens, not only do I feel hopeless and worthless, I’m being told it’s my own fault, and shamed for how I’m feeling.

A typical day for me involves… 

I have a full time job, so on weekdays, my day of course involves that. But in terms of illness and coping strategies, I get up early to exercise most weekdays before work – it helps my mood, and it helps me to keep a consistent schedule. I spend time writing each morning – mostly journaling. This helps me brain dump, more or less, so that I can try to sort through the mish-mosh of feelings, emotions, thoughts all going through my brain. Without this outlet, it feels like non-stop stimulation inside of my brain, before even getting much input from the “outside” world, and it makes concentration and focus extremely difficult. Most evenings after dinner, I try to meditate, and/or do some yoga. It’s a wind down for my day, and helps settle my brain, so that I can hopefully get some sleep. If it’s not a work day, I try to spend as much time in the sunshine and fresh air as I can – especially in nature. I’ve been slacking in that lately, and really need to get back into it.

The one thing I cannot live without is… 

My loved ones. They’re my rocks. But if I had to choose an actual thing… I’d be tempted to say my medication, but I’ve had to go temporarily off of it for personal reasons, so technically, I’m living without it for the moment.  So, I’d probably have to say my journal. Writing is my solace. My journal will “listen” to my thoughts and emotions and feelings with no judgement, and it lets me get it “out of my head” without having to actually direct it at anyone, which is huge in helping my relationships with loved ones and friends (note: I’m far from perfect in this regard, but it helps). I work through so much in the pages of my journal, and I can’t imagine not having that outlet on a daily basis.

Being ill/disabled has taught me… 

That I am not alone, and that so many people struggle with their mental health. You hear the statistics, that one in five Americans have a mental health condition, but when you begin talking about your illness and advocating, and you have people you would never have thought coming to you and saying, “Thank you so much for speaking out, I struggle too,” it really hits home. That “one in five” goes from being a statistic to something tangible that you can feel in daily life.  My illness has also given me a purpose. In my adult life, I feel I’ve floundered a bit in really finding where I feel I belong. But utilizing my illness to help others has, from the very start, always felt 100 percent like it’s my purpose and a path that I have to follow. It feels such a natural part of my life, almost an extension of myself, when so little else does sometimes.

What advice would I give someone recently diagnosed… 

I have so much to say here, but I’ll try to condense it!  First, I would tell them to learn everything they can about their illness (from credible sources of course), and that when they’re ready, finding support with others who have the same/similar illness  – whether they find this in an official group or among friends or on social media/online – can make a world of difference. I’d also remind them how often depression and anxiety lie, and that there may be days that their illness wants them to believe every terrible thing about themselves, but that these aren’t true, no matter how convincing the lies sound.  I’d want them to know that there’s hope, there are others who “get it” and are here to help, and that they are not alone. Finally, I’d tell them to make sure that they have a healthcare team that they trust, and just as importantly, that trusts them. We know our bodies and our brains better than anyone else because we have lived with them our entire lives, and it’s important that our health professionals understand this – we deserve that respect as patients, to have our voices heard and not to be discounted.

My support system is…

My husband, my family, my friends, my therapist, my social media/online spoonie family.

If I had one day symptom/disability-free I would… 

Live as fully as I could – do activities I love to do, with people I care about, and try my hardest not to, as so often happens, let the anxiety of “Ok, I feel good now, but when is the proverbial other shoe going to drop”  creep in. Afterall, if I let it creep in, I’d cease to be symptom free!

One positive of having a chronic illness/disability is…

For myself, I’d say that it’s helped me to be more understanding and empathetic. Because I know I’m often struggling with a lot that others can’t see, I try to also remember this when the situation is reversed, and I try to put myself in their shoes before passing judgement. For instance, if someone’s speaking to me badly, I try to ask myself “what might they be going through that I can’t see that’s causing them to act this way?”.

In addition, as mentioned above, it’s given me a purpose and direction. Without my illnesses, I wouldn’t be an advocate, I wouldn’t be involved in so many various organizations and causes, and I wouldn’t have met so many amazing people through these.

My links are:

https://spreadhopeproject.com
www.liliesandelephants.blogspot.com
Twitter: @mayanorthen
Instagram: @myohmy23

Interview October – Jan

Interview October is almost over, but we have another guest to meet – Jan Collins

JanCollins

Introduce yourself and tell us a bit about you…  

I am Janet but prefer Jan and I am 60 years young. Recently divorced after 37 years of marriage I have 2 children, Zoe 35 and Nathan 26. Zoe has my only granddaughter Amerthyst who will be 7 in November and she is the light of my life

Chronic illness(es)/disabilities I have… 

I have among other things chronic brittle asthma, COPD, type 2 diabetes, osteoarthritis and the onset of osteoporosis in my left hip. For 15 years I was on steroids for my asthma which has caused me all sorts of digestive problems. I am pleased to say that I have recently come off the steroids and have already lost over a stone (14lbs) in weight

My symptoms/condition began… 

I have had asthma all my life, when I was 4 my parents were told it was infantile asthma and I would grow out of it. In the interim, I have had bad spells and good spells. About 16 or 17 years ago I collapsed at home and if it hadn’t been for my then 9 year old son who didn’t panic but kept his calm I could have died. For the next 6 months or more I was in and out of A and E, my mum and husband were on the phone every day trying to get me to see a specialist. We were told that as mine was asthma, not lung cancer I didn’t have priority. When I did see the specialist he put me on steroids and boy did that open a can of worms. Every time they found something else wrong it was due to the steroids. I put on loads of weight and lost all my self-esteem.

The hardest part of living with my illness/disabilities is… 

The worst point was being diagnosed with diabetes 3 years ago which restricted my already limited diet even more. My ex also has diabetes and could eat almost anything without it causing any problems. I quickly learnt I couldn’t and was put on insulin developed fat growths on my arm and in my eye and had problems with my feet. It was so frustrating, I lost my self-confidence and my controlling ex basically persuaded me I couldn’t do anything so I became housebound except when he took me out. Then he walked out, my son helped me do a food diary to work out what I could or couldn’t eat, yes it was limiting but at least I knew where I stood. I discovered an inner strength and regained some of my self-confidence. A haircut and losing weight with people telling me how good I looked did a lot for my self-esteem as well.

A typical day for me involves… 

At the moment a typical day for me starts when my alarm goes off at 5am. This gives me three-quarter’s of an hour to get up and get dressed before I wake my son. After the first of many cups of tea the dog and I go for an OK let’s get our bodies moving walk, we both suffer from arthritis. This is the first of at least 3 walks we do. Then it’s medicine time which can take up to an hour. 2 mornings a week the community transport bus picks me up from home and takes me into town (I can no longer drive due to my eye problems). My daughter comes over once a week and we go out for a coffee. Afternoons are given over to crafting and studying, I am doing an O. U. English literature and creative writing degree. After a late tea and my second lot of insulin and, my 3rd lots of nebules I do my son’s lunch box for the next day before sitting down for the evening. I usually catch up on social media and deal with anything that has cropped up, write to my numerous pen pals or read. Every day my intention is to be in bed by 10 but it rarely happens. For one thing, my evening routine of medicines, putting cream on my feet etc takes over an hour.

Being ill/disabled has taught me… 

Over the years I have adapted my lifestyle to suit my needs but despite what it sounds like my health doesn’t dominate my life I always say I am not disabled just less enabled in some fields but have learnt so many new things to more than compensate for those things. People feel sorry for me but I can’t understand why I have so much going for me and have learnt so much. These days I can’t imagine living without my health issues but that aside my Jack Russell Terrier Herbie is my lifeline, he is company, he gives me a reason to get up and walk him and thus exercise. As a result of watching my diet changes and walking Herbie, I have lost over a stone (14lbs) in weight. I am still overweight but every bit helps.

What advice would I give someone recently diagnosed… 

Pace yourself, set targets for yourself but don’t knock yourself up if you don’t achieve them.

One positive of having a chronic illness/disability is…

Being disabled has taught me so much it is difficult to remember them all. Tolerance, patience, understanding, empathy, compassion, I have become a better listener and learnt many new skills all as a direct result of my health problems

 To quote 2 sayings my grandad used to say

” count your blessings one by one every day.” These might be anything from the love of your family and friends, sunny days or just the fact that you are still breathing.

” Smile and the world smiles with you, cry and you cry alone”. People get fed up with you if you are always moaning.

Life is for living, enjoy.

My links are:

collinsjan20@gmail.com and people can private message me anytime.

Other than that I am a member of Disability Matters and I am an ambassador for the online group Carenity.com specialising in Respiratory Diseases, Chronic Pain, Depression and Diabetes.

Interview October – Beth

Interview October continues with another wonderful guest…let’s meet Beth Crutcher

BethCrutcher

Introduce yourself and tell us a bit about you…  

My name is Beth…I am a 52 yo, Married, mother of 2, Full time Registered Dental Assistant. I’ve been in the same dental office since 1995.

Chronic illness(es)/disabilities I have… 

I have Chronic Congestive Heart Failure, My Ejection Fraction, or how the blood pumps through the heart currently sits at 35- 40%, normal is 55-70%. I also have been diagnosed with Postural Orthostatic Tachycardia Syndrome and Mixed Connective Tissue Disorder.

My symptoms/condition began… 

My symptoms first began with the birth of my first child in 1988, I was 21 years old and had an uneventful pregnancy, but soon after the birth of my daughter I noticed I could not take in a deep breath, and felt a heaviness on my chest. Since I had just had an emergency c-section, doctors overlooked any concerns as normal pregnancy symptoms. When I persisted they finally saw me and realized I was in distress as my oxygen levels were in the 70’s. I was sent to the ER and treated for pulmonary embolism, pneumonia, asthma, and even anxiety. I was away from my newborn for two weeks and discharged without a proper diagnosis. That of which I would not get until the birth of my second daughter 13 years later in 2001 and in post-pregnancy had shortness of breath, and swelling, and could not lie flat. after two weeks of medical professionals saying it was normal..an ER Cardiologist gave me a diagnosis of PeriPartum Cardiomyopathy. Pregnancy-induced heart failure,

My Ejection Fraction was at 10%  and I may get better with medications, or I may need a heart transplant.  I have been on an up and down EF rollercoaster of treatments and medications and am currently stable with an EF of 35-40%.  Still very symptomatic and having other symptoms of  extreme fatigue, lightheadedness, brain fog,  excessive heart palpitations, exercise intolerance, nausea, severe headaches, aura migraines, joint pain , stomach pain, sun/heat exposure intolerance, dizziness, high and low blood pressure readings led to having a positive tilt table test and a diagnosis of Postural Orthostatic Tachycardia Syndrome (POTS), an autonomic dysfunction, Dysautonomia. and blood work revealed a high ANA reading which gave me a diagnosis of Mixed Connective Tissue Disease, an autoimmune disorder.  All aspects of each illness has its challenges and it is often hard to balance one against the other.

The hardest part of living with my illness/disabilities is… 

An unpleasant aspect of HF and POTS and MCTD, for me, is doing a task that involves squatting down (rather than bending from the waist, which makes me feel faint on standing upright). Getting something from the bottom of the shelf, or reaching and stretching in a continuous motion, walking up a flight of stairs, as well as taking the elevator leaves me very short of breath, or dizzy. I ask why this happens and they said it’s a bit like standing on a garden hose – squatting down like that with an inefficient heart restricts the return of blood to the right side of the heart through the vena cava, consequently there is less to go to the lungs for oxygen before being pumped around the body by the dysfunctional left side of the heart. I also don’t like the pain in my joints, it can make the smallest of tasks unbearable.

A typical day for me involves… 

First getting out of bed in the morning is slow moving.  I have learned to move carefully. I only have so much energy to use in a day. Monday-Friday I work full time in a busy dental office. I have learned my limits and go through life accordingly. When I’m in a flare-up, I rest. I do activities/ family functions when I feel up to it, when I feel I can’t… I don’t.

The one thing I cannot live without is… 

My Husband and children and soon to be granddaughter!

Being ill/disabled has taught me… 

You know who your real friends are. The ones that understand you may not be capable of doing what you once did, but support you when you can or can’t.

What advice would I give someone recently diagnosed… 

Trust yourself. Keep telling yourself, You’re not unreliable, Your health is. It’s not your fault

My support system is…

My family and friends and work family. And social media groups.

If I had one day symptom/disability-free I would… 

I would with all my loved ones around me, run down the beach, climb a mountain to look at the view down below. And just take in the sunshine and eat whatever I want!!!

One positive of having a chronic illness/disability is…

The connections I have made through social media and becoming an advocate for PPCM with SavetheMommies.com. My Heartsisters are like my family.

My links are:

SavetheMommies.com

Interview October – Maria

It’s time to meet our next Guest for Interview October. This is Maria Thomas

MariaThomas
photo credit: Amy Boyle Photography

Introduce yourself and tell us a bit about you…  

My name is Maria Thomas, and I’m a writer, editor, content creator and book nerd. Seven years ago I launched my blog, My Life as a Puddle, where I’m creating hyperhidrosis hope and awareness one drop at a time.

Chronic illness(es)/disabilities I have… 

Hyperhidrosis (excessive uncontrollable sweating), ulcerative colitis and Hashimoto’s thyroiditis

My symptoms/condition began… 

Hyperhidrosis- age 7

UC – age 33

Hashimoto’s – age 36, and I found out by accident after some bloodwork!

My diagnosis process was… 

A long time coming for my Hh. I found the term in a Google search but didn’t get a proper diagnosis until age 21.

UC – the perfect storm. I was going through a divorce, selling the first home I ever owned, and moving into a tiny little apartment. It was a trifecta of stressful events and my body decided to respond with blood in my stool and a frequent need to go.

The hardest part of living with my illness/disabilities is… 

Hh – Getting people to understand that I am not sweating because I am nervous. I’m nervous BECAUSE I’m sweating. There’s a difference. It’s also hard for people to understand how much my life and choices are affected by my sweating. It’s not “just a little sweat.” I try not to let it rule my life but sometimes it does.

UC – having a chronic autoimmune condition makes me tired sometimes, and more prone to GI pain and distress. I’m not high maintenance, but I’ve really had to overhaul the way I eat, which can make it difficult to eat out sometimes. I now follow a Paleo nutrition plan, which is hard when you live in a state known for its craft beer, which is unfortunately loaded with gluten.

I also have to stab myself every other week with a biologic injectable medication. Try that with sweaty hands!

A typical day for me involves… 

Turning my desk fan on and off at least 25 times a day while at work, then coming home and changing my sweaty clothes and socks if necessary. If I’ve worn sandals, I’ll usually wash my feet since they’ve developed a coating from sweating.

UC-wise I never know when I’ll experience symptoms. I’m in remission now, but occasionally I’ll have gurgling sounds and stabbing pains in my lower abdomen.

Hashimoto’s-wise, sometimes I feel so lethargic it’s like i haven’t slept in days. Other days I feel like I could run a marathon.

The one thing I cannot live without is… 

My books, my husband, and my Pug named Maya

Being ill/disabled has taught me… 

To listen to my body and take care of it. I was hospitalized once because of my ulcerative colitis. It was scary and miserable and terribly isolating. It also taught me to be my own best health advocate. I had nurses trying to feed me grains and gluten and dairy. Not once did my GI doctor at the time say gee, you might want to avoid all that stuff. I had to seek out a functional medicine doctor to learn all of that and switch to a Paleo diet.

What advice would I give someone recently diagnosed… 

Do your research! Read the medical literature, read books, and absolutely go see a functional medicine Doctor who treats the whole body as a system and doesn’t just prescribe medications to cover up symptoms.

My support system is…

My husband and my family

If I had one day symptom/disability-free I would… 

Go on a public speaking tour and wear high heels without no-show socks or absorbent insoles because I wouldn’t be worried about sweating all over everything ! Then I’d do a meet and greet and shake everyone’s hand.

One positive of having a chronic illness/disability is…

I get to choose how I respond to my life, which is why I choose to make my sweaty mess my message. You can either rise up or stay below. All it takes is one different choice.

My links are:

https://www.facebook.com/mylifeasapuddle/
https://twitter.com/MyLifeAsAPuddle
https://www.instagram.com/mylifeasapuddle/