Thyroid Disease: The lesser-known facts that drive us crazy!

When you mention thyroid disease to someone there are some facts that the person might already know from things they’ve heard about having an underactive (hypothyroidism) or overactive (hyperthyroidism) thyroid. However, there are some lesser-known facts that drive us crazy. Today we are sharing some of these facts with you.

Sleep Problems

Everyone knows that hypothyroidism can cause sleep cycle problems. How many nights do you lay in bed, staring at the ceiling, waiting for your body to decide that it was, indeed, going to let you go to sleep? You look at the clock and it’s almost midnight….and that’s early for you. You look again, and it’s 3 am. Yes, you dozed off for a bit, but here you are again, awake and annoyed. That’s a typical night for you. That’s a typical night for most people, but it’s even more common when your thyroid levels aren’t well-controlled, or during those lovely nights when your levels have changed and you haven’t gone to the doctor. We all understand those. Those aren’t the sleep problems I’m talking about here. That’s frustrating, but can be dealt with.

Thyroid Disease: The lesser-known facts that drive us crazy!

No….the sleep problems I’m talking about is called a hypnic (or myoclonic) jerk. You managed to get to bed at a decent hour, and you’re lying there, nice and heavy, finally embracing the black oblivion of sleep relatively easily. It’s been such a long day, and you’re exhausted. Ahhhh…. Then suddenly, WHAM!!! You better hope there’s no one lying in bed beside you or you’ve just punched them in the face. Or worse, maybe you suddenly find yourself on the floor. Maybe you got lucky and just find yourself sitting bolt-upright, a little confused and very disoriented… and THEN fall out of bed. I’ve actually woken up facing completely the wrong direction and nearly fallen out of bed just trying to lay back down. Sound familiar? 

This has happened to me SO many times, but there’s good news, and there IS relief in sight! Here’s what you can do!

  • DO try to go to bed at the same time each night.
  • DO minimize stress in the evenings. Unwind with a cup of tea or a hot bath.
  • DO develop a routine starting 30 minutes before bedtime. Put your pajamas on, read a book, brush your teeth. Every night. 
  • DO get a weighted blanket, or heavy blanket. These are readily available at many department stores or online.
  • DON’T watch television, use your tablet, etc., for 30 minutes prior to bedtime. This is the biggest mistake you can make. Television and screens stimulates the brain so your sleep cycle gets disturbed. If you MUST do something electronic, get an e-book reader. These are designed with blue-light filters and non-flickering lights. (Ironically, I’m writing this at 10:30 p.m., because I can’t sleep…)
  • DON’T drink caffeine in the evenings. I quit drinking caffeine altogether!

Eating Issues

*cough* *cough* *choke* *sputter* *cough* *cough* 

“Honey, are you okay?” Once I get done mopping up the food or water that I have subsequently sprayed across my placemat (or worse, my kid’s…), I tell him I’m fine.

This used to be a typical question during meals, and when my thyroid levels are off, it’s still a regular occurrence. I love chicken noodle soup, baked potato soup, chili, stews…. All of these are my favorite winter foods, but thyroid disease has forced me to change the way I eat. See, the thyroid drives your entire body… everything. It drives sleep cycles, hair growth, weight control… and reflexes, such as closing your trachea while food enters your esophagus. So those mixed-texture foods you love can occasionally become your worst enemy. I remember one meal that I choked on FOUR times. It involved my favorite broccoli and cheese soup, which, coincidentally, I don’t eat anymore.

Eating out now calls for careful consideration. There may be lots of food that I love, but not everything loves me at the dinner table. It’s more than just watching my caloric intake, thanks to the battle of the hypothyroid bulge.… Eating out can now be considered an adventure into finding out what new food is going to make me choke today! YIPPEE! 

Motion sickness

Roller coasters are great, and I love car trips with my family, but they make my family insane. Why? Because I always have to drive. I love driving, and traffic doesn’t bother me. I really don’t mind. But I have to drive, because it’s easier for them than having to deal with me being in bed for half a day after we reach our destination. Luckily for them, I don’t end up getting sick in the car (or at least I haven’t yet…), but I end up being nauseous and dizzy the rest of the day. I can ride in the front seat for shorter trips, but over a couple hours, I have to drive. My parents took me to dinner over the holidays…. I almost couldn’t eat because I had to sit in the back of a minivan for 20 minutes. That was just enough. Remember: Dramamine is your friend…

Thyroid disease and motion sickness.

Skin problems

Dry, itchy, flaky…. and spotted! No, I’m not talking about your dalmation. I can’t tell you how many times my best friend has looked at me and said, “You have something on your… oh, never mind. It’s just your skin.” After dinner, my husband will tell me to wipe my face because I have a stain by my mouth. No, that’s just one of the fun parts of my thyroid. I have one dark spot on either side of mouth, just below the corners. It’s not a stain, and I didn’t forget to wipe my mouth. If I was a guy, I could hide it easily with a goatee… but alas, I am not. Makeup might hide it for a while, but thanks to my unpredictable skin (another fun symptom), it also breaks me out. Ugh.

You Are NOT Alone!

The news isn’t all bad, even though it’s been all doom and gloom until now. Admit it… a grown woman rolling out of bed (and her teenager asking if anyone else felt the mid-night earthquake) is relatively funny, as long as it’s not you. The fact is until I met someone else who was open and honest about their hypothyroidism, I honestly thought that my problems with motion sickness, eating, and sleep was just normal changes in my body due to ageing.

Looking back, I can mark the exact time when my thyroid went wrong. It started when I was in high school, and somehow got missed during my first pregnancy. I thought that the fact that motion simulators suddenly made me queasy was just the fact that I wasn’t a teenager anymore. It wasn’t until I finally met someone who struggled with the same issues, who also had hypothyroidism, that I put two and two together. Now that I know these are all due to my thyroid, it gives me some idea of when my thyroid levels are all out of whack so that I can go see my doctor for a blood test. I hate getting stuck with needles, but I hate falling out of bed at 41 years old even more.

About The Author

Image of Writer Bethany Orr Standing next to a sports car.

Bethany Orr is a cellist, avid car enthusiast, and mom of two, currently residing in Fall Branch, Tennessee. She is a full-time parent who was diagnosed with autoimmune hypothyroidism in April, 2004. She also writes a blog geared to inspiring adult beginner musicians.

Out of Breath: Am I Having Anxiety or a Heart Attack?

Sometimes, it can be a struggle to get a proper diagnosis when something is not right in your body, Today, I’d like to tell you the story about when I was having breathing problems as a teenager. I was misdiagnosed as having anxiety but in reality, I was actually having a much more serious issue. The following is the story of how I was finally diagnosed with a thyroid disorder.

Growing Pains? But I’m not Growing Anymore!

My symptoms started when I was around 14 years old. I was living in Holland at the time and sitting my Dutch class when, out and out of the blue, I got shooting pains in my upper arms and across my chest. These pains were so intense that I got out of my chair in the middle of class. I went to the doctor where they did a lot of tests. They checked my muscles, joints, and blood and nothing showed up so they told me it was probably just growing pains. This didn’t really make sense to me at the time and at my age, but I just listened to the doctor and went on my way.

I’m Calm, Really

Over the next couple of years, my symptoms started to change and still seemed very strange to me. By the time I was 16, I started to constantly experience shortness of breath. I felt like I couldn’t take a deep breath in. Once again, I went to the doctor and they started checking my oxygen levels. My oxygen levels were fine, so they decided it must be all in my head, like I was having anxiety. By the time I was almost 18, the doctor sent me to breathing therapy because he thought I was having panic attacks.

I didn’t feel like I was having panic attacks. To me, it was something that just happened and would subside just as suddenly as it came. I just felt like I couldn’t breathe properly. Around this time, I would also have strange dreams in which I was choking or like I was drowning underwater. After what was probably just a few minutes, I would wake up and take a deep breath. My body just felt like it was under so much stress, but when I would explain this to the doctor, it would be dismissed as anxiety.

breathe, anxiety, thyroid, Hashimoto's, Graves' disease, breathing problems

Breathe in….Breathe out….

The doctor sent me to therapy to learn breathing exercises to help me cope with this so-called anxiety.  I learned to ground myself and to take very controlled breaths in through my nose and out through my mouth and how to do these breathing exercises when I’m  in situations when I feel stressed or need to calm down. Funny enough, this helped me about 15 years later when I was pregnant and found myself in a scary situation, but did nothing to help my current health difficulties as these were not, in fact, panic attacks.  

By the time I was around 19, I was going from hospital to hospital and having test after test, but no one could figure out what was wrong with me. Each test would come back negative, and that was just about the worst thing someone could tell me. According to them, I was  the picture of perfect health.  That really upset me because I knew something was wrong. I know it sounds crazy because to most people, a negative test result would be a good thing, but I knew something was wrong with me so it actually made me quite upset.

A Lead in the Right Direction

When I was 19, they did another comprehensive blood test to really try and figure out what was wrong with me. As a result, my doctor discovered that I had something wrong with my thyroid and referred me to the hospital to have an ultrasound to try and figure out what’s really happening. I called the hospital to make an appointment for the test and to see a specialist, but I was told the first appointment wouldn’t be for four months. The lady who was scheduling asked me if it was an emergency, and my doctor didn’t say it was, so I said no, as my doctor didn’t say it was, and waited the four months until it was time for my appointment.

At this time, I was 19, living independently from my family in another city, and working part-time in a butcher shop. When I was at work one day, people started looking at me really strangely and asking me what was wrong with my neck. I looked in the mirror and it looked like I swallowed an inflatable, donut-shaped life preserver! It looked like a cartoon! My neck was swollen really badly, but even though it looked and felt strange, it didn’t hurt at all. My hands started shaking, but at only 19, I still didn’t know that anything was really wrong.

I went to the doctor, but figured I would probably be okay since I’m already on the waiting list to go to the hospital. It didn’t occur to me at the time that I should call the doctor and tell them what my symptoms are. My neck was huge, but at that point, I didn’t even know where my thyroid is or what symptoms to watch out for. Back then, the Internet wasn’t really available like it is now. I did do some research in the library, but still didn’t think it was a big deal, and by this point, my hospital appointment was only three weeks away, so I thought I could wait. By this point, my hands were trembling so badly that it became a game to see if when I ate something like soup, anything would be left on the spoon by the time it reached my mouth.

As Serious as a Heart Attack

The day came that I had my appointment and I was sitting in the waiting room with one of my friends. The doctors kept coming in calling the names of each patient as it was his/her turn to come back. Finally, I was called by a doctor that was old and cranky to say the least. He called out my name and I got up. He has never seen me before and knows nothing about me. He just knows I’ve been referred and he needs to have a look at me. The doctor looked at me and said that he hoped I had been sent there urgently. I’m like, “What?!” He asked how long I had been on the waiting list. I told him I had been waiting four months. He was shocked and said that I need to be seen by cardiology urgently. Once again, I was shocked! I asked, “What? Where are we going?” He said that he needed to make sure my heart would last the day. “WHAT!?!?”

heart, breathing problems, thyroid, hashimoto's, Grave's, hypothyroid, hyperthyroid

There I am, walking with this doctor, and we’re going past all these elderly people waiting in line. There was a lady who was probably 80 years old sitting with an IV running, and yet I was the urgent one! First, I went to cardiology, where they stuck all these things all over my body to test my heart to make sure I was fine. I’m like, Oh My Gosh! Again, I’m 19, so my friend, who was maybe 21 at the time, and I were laughing and giggling throughout. We would laugh and make jokes to ease the tension, but all the movement was impacting the test, so soon enough, the technician peered through the curtain and told us to stop so he could get an accurate reading of my heart rate. We calmed down so he could check my heart rate. It was not very good, but it was good enough to allow me to go to my consultation.

By this point, I was freaked out. I just wanted to know what was happening to me. I had the consultation, during which he ran bloodwork and tests to make sure I was okay because he was scared that I was going to have a heart attack. Again, I was 19 and had been having these symptoms for three years. I told him about my shortness of breath, that I had to go to breathing therapy, and because of it, I can calm myself down when I get tense, but I still couldn’t breathe normally.

The doctor said that the reason I couldn’t breathe was because my heart was in such distress that I couldn’t get enough oxygen. I just freaked out! I could not believe what he was telling me. Long story short, I had to go into the hospital every four days for a whole bunch of different tests and it turns out that I had Grave’s Disease, which I later found out is an autoimmune disease of the thyroid.

A “Grave” Answer

At the time, I was told I had this condition, Graves Disease, but the doctor really didn’t tell me much about it. He said it should go away on its own in about a year and a half, so we just needed to focus on getting through the next year and a half. Knowing what I know now, I would have questioned this, but at that point, I was still only 19 and didn’t know much about the thyroid. I was told I just needed to take a some pills for my heart and some for my thyroid and additional pills to counteract the effects of those pills, about 13 pills in all. I also had to go into the hospital for tests every four days for the first six months of my treatment.

Pills, medications, Graves' disease, Hashimoto's, pregnancy, hypothyroidism, hyperthyroidism

I had treatment for about a year and a half. My Graves was under control and I thought I was cured, as this is what the doctor told me. I was taken off all the medicine but warned that in about 20 years, I would have the opposite problem: my thyroid would go too slow instead of too fast like it had worked previously.

The doctor explained that with Graves Disease, your thyroid works too fast. Your thyroid is like the motor of your body. When things like your digestion goes too fast or you feel anxious and jittery, or you have a fast heart rate, you’re hyperthyroid. That’s what had caused all of my weird symptoms. The doctor told me I was cured after taking all the medicines.

My Graves Disease was gone, but in about 20 years, my thyroid will to be too slow, or hypothyroid, but that’s about it. He said I would have to take a pill for it for the rest my life, but that’s about it. That didn’t sound so bad, so I just signed the papers and left the hospital. No more tests, no more pills, no more anything. I was finally free to go enjoy my life. I was cured! Or so I thought….

Pregnant! But Something Wasn’t Right…..

Seven years later, I got pregnant. I had a pregnancy from hell. I didn’t know what was going on. I had bad moods all the time. I was so tired that I couldn’t stay awake for more than 3 or 4 hours per day. It was really extreme. They thought I had postpartum depression 6 months after I gave birth to my daughter. Years later, I found out that I actually have Hashimoto’s Disease, which is an autoimmune disease of the thyroid, but now the thyroid goes too slow. The doctors gave me a pill and said to take this pill every morning when I woke up and I’ll be fine. I had to test my thyroid every year.

The numbers looked okay, but I still wasn’t feeling well. Long story short, when I was researching Hashimoto’s, I figured out it’s not just hypothyroidism, or when your thyroid goes too slow, it’s an autoimmune condition. I also figured out that Graves was an autoimmune disease of the thyroid, which I never knew before. Apparently, I had an autoimmune disease of the thyroid, but it was just in remission. I wasn’t cured at all, and the doctor failed to tell me about it because I’m sure that he knew. Since I was 19, he thought he could just keep it light and simple, and just tell me I was cured. You can read more about my pregnancy here.

Pregnancy, Postpartum Depression, Hashimoto's Disease, Thyroid, Grave's Disease

Always Trust Your Instincts!

They lesson I learned and that I hope to convey to others who are teenagers or young adults is that teenagers can remember. I remember every single thing that this doctor told me. If he would have told me that I had an autoimmune disease of the thyroid, I would have done things differently while I was pregnant. I would have pressed for a test of my thyroid. I would have told them that I had a thyroid issue when I was about 19, but I’m cured. Instead, no one ever tested me. No one looked for anything while I was was pregnant, and I think a lot of my cascading downhill health could have been prevented if I would have been presented with the right information when I was a teenager and having all these problems.

Teenagers know when something is wrong with their body. They’re not just being lazy. They’re not just having panic attacks. They’re not just making it up. If they are really suffering from issues or having symptom for years at a time, it’s real, and you just have to search until you find it. If you have a problem with your health, be your own advocate. Don’t give up. Even when the doctor told me I was having panic attacks, I still didn’t believe it. I complied with the doctors and went to the breathing therapy, but I never ever gave up. It didn’t matter how young I was. It didn’t matter that nobody believed me. I just kept going. I got my diagnosis and in the end, I got my treatment.

What You Need To Know About Pre-Employment Drug Testing

Drug Test - Failed

I recently had to undergo drug testing at my place of employment and I didn’t pass. To tell the story correctly though, I need to take you back in time about 20 years. 

Pre-Employment Drug Test - Failed
Drug Results – Failed

I was married at the time, and my husband found a job he really wanted.  He was offered the position contingent on his passing a drug screen.  Long story short, he failed the drug screen.  He blew his stack, threw his tantrum, SWORE he had been clean for the test, and claimed that there was NO way he could have failed the drug test.  Unfortunately, I knew he would go off and see his cousin quite often during the week, and that they both “partied” REAL hard during his visits.  So, when he swore he was clean for the test, I was busy rolling my eyes, thinking about his cousin and him, and basically blew him off.  I was extremely sceptical, to put it bluntly.  

Failing The Test

Now, fast forward almost 20 years, I’m in a similar situation.  I failed a pre-employment drug screen. I have been diagnosed with Sjogren’s Syndrome, Antiphospholipid Antibodies (try saying THAT one 3 times fast!), Hypothyroidism, Vitamin D Deficiency, Fibromyalgia, and finally, Sleep Apnea.  I was on Fluoxitine, Ranitidine, AND Loratidine, all of which could possibly test positive for Amphetimine.  I was also on Tramadol, which could have tested positive for Opiates. 

Of course, the first thing I say is that my doctor either knows about everything I take or has been the one who prescribed it to me.  My boss, being a very understanding guy, tells me that if I can figure out what medicine it is, and if I can do without it a few days, he would get me another drug test, but I would have to pay for it.

I didn’t know any better, but I suspected it was my anti-depressant, so I went for 5 days without it.  BAD move!!  I redid the drug screen and failed once again.  I was fired that day.  I almost had a nervous breakdown to go along with it (no antidepressants and all).  I went back to the testing laboratory.  They got permission from my now-previous employer to give me copies of both test results, then the manager of the lab took pity on me and explained how drug testing works.

Lab Testing for Pre-Employment Drug Screening
Lab testing for Pre-Employment Drug Screening

The Drug Testing Process

• First, the sample is taken and tested.  

• The results are then sent back to the prospective employer, and, if the employee fails the drug test, the lab asks the employer if they want to confirm the results.  

• When the lab asks if the company wants to confirm, it does NOT mean do the same test a second time on the same urine.  It means they want to put the sample through a Gas Chromatograph/ Mass Spectrometer, so that they can identify the exact chemical compound that is causing the enzymes to react, to see whether or not it is a compound that is legal or not.  

• The company will encourage you to “clean up”, drink lots of fluids, and try to pass a NEW test, rather than confirm the results.

• What the company wants you to do is take a wild guess on what MAY be affecting your drug screen, and then get you off of it so you MIGHT pass the drug screen.  The lab will be doing the exact same test on different urine, expecting different results.  

• If you guess wrong, you will STILL test positive for whatever it was, you will STILL lose your job, and you will have ZERO recourse because you used your second shot on a re-test, rather than a confirmation.

I found this out several days later, after discovering this handy guide to drug testing.  It told me everything I needed to know about what COULD have shown up on my drug test.

So, the moral of the story is, if you KNOW you aren’t doing anything illegal, go for the confirmation rather than the retest, EVERY TIME.

Pamela K. Oakes is 48 years old and has suffered from Fibromyalgia for about 5 years.  She lives in Louisiana with her three dogs.  She has a vested interest in helping people in similar situations to her own, and seeks to educate people about her illness and how best to deal with it.

Changing Lifestyles with Chronic Pain

Kathy Marie

By Kathy Marie

Kathy Marie

If you would have told me 8 years ago that my life would take a drastic turn and if I were to look ahead I would see me in the state I am now, I would have told you that there’s no way I would allow this kind of struggle to go on day in, day out until it became as natural as breathing. I would have told you that I would never be able to survive the level of pain, confinement, fear and change that being chronically ill brought with it. Basically, I would have said that I couldn’t handle living in that way; the struggle would be too great. Too difficult. Too costly.

Eight years ago, I was a full-time member of the working class, I was active and fit, I was a “get out there and live” kind of woman. On any given weekday you could find me loving my job (I was a legal assistant for a local real estate attorney) and juggling household chores with the dexterity of a gifted circus act. I lived in a split level home so I was always scooting up and down the stairs with ease- sometimes skipping steps in my race to get to where I was going.

On any given weekend, you could find me out on nature, didn’t matter the climate- hiking, jogging, walking trails, sledding, snowshoeing, tennis, biking… you name it, I did it all- and never even had one thought of  “What would my life be like if I couldn’t do these things?” And probably the reason I never thought that was because there was no reason to- I was healthy. Cinderella sang it best (now I’m showing my age, lol) and it’s very true- you don’t know what ya got, til’ it’s gone.

A lot has changed in eight years. And I’m still trying to cope with how drastically it has.

On any given weekday these days- you can find me in bed. Propped up with pillows, stinking of menthol, meds within easy reach, surrounded by books, coloring pencils and adult coloring pages, my journal and the laptop I’m currently typing on. I am most often in pajamas or lounging/yoga pants. Not because I’m too lazy to change- I often change a few times a day- but because it’s the only clothing that doesn’t hurt my sensitive skin. My typical morning begins with slow and painful steps to the bathroom, which is less than 10 feet away. Every single muscle and joint hurting and sore and aching. Always.

The rest of the day is spent by measuring time against what I’m capable of doing. For example- a typical dish-washing episode can be an all day process because I have to stop frequently to get off my feet. The pressure on my back and hips makes it impossible to stand for longer than just a few minutes before I need to grab a seat and ease the pain. If I have more than just a few dishes… well let’s just say I am perpetually washing dishes.

If I have dusting, vacumming or any other chore on the list, it gets broken up by frequent breaks. I actually have to plan to clean my bathroom, because it takes everything in me and I know that once I start, I have to keep at it until it’s done. Kneeling and stretching to scrub a tub is akin to being mauled by an angry bear.

And I know that sounds exaggerated, b/c how would I know what that feels like- but when your muscles feel shredded and your body feels like it was repeatedly slammed against a hard surface…you get the drift.

My weekends are nothing like they used to be. Whereas before I would be out and about and experiencing the joy of being active, now I am consistently handing my husband a grocery list and apologizing for not being able to go. We live in a 3rd floor walk up apartment, and those stairs may as well be a mountain. My husband gets all the recognition he deserves for “getting” why I can’t go along with him, but I know it must get annoying to constantly be the one taking care of business.

Some days I am driven to frustrated and helpless tears because of how cut off from the rest of the world I feel. While I know that it is not my fault that I am chronically ill, I often push myself past my coping ability simply because I can’t stand feeling idle. I’m at the stage where I have accepted that I will always be in some type of measurable pain for the rest of life. The acceptance itself was a long and drawn-out battle, and some days, even though I have accepted it- I still shake my fist and rail against the injustice of it all.

Do I feel sorry for myself? Yes. Sometimes. I think anyone who suffers from Chronic Pain has moments where we are self-contained and all we can think about is the unfairness of it all. I also think that is completely normal. Our lives have been thrown into a blender and the resulting mix looks like nothing we’ve ever seen before.

Stuck in bed? What the hell is that?

But lately I’ve been trying hard to look in-between the difficult moments to find the sweet ones- and stop beating myself up for the fact that I am changed. I am not the active and fit suburban soccer Mom I used to be. And that’s okay. I still have the same heart. The same soul. They may be a little worse for the wear but they still function. I can still love. And admire. And respect. And enjoy. And count blessings. I don’t need perfect health to appreciate the good things in life. In fact, had it not been for some of the more difficult aspects of being chronically ill, I don’t know if I ever would have paused to ponder the notion that life can be appreciated in all manner of ways. I’ve learned a lot about myself on this CP journey. I am blessed in so many different ways and I hope I never lose sight of that.

Eight years ago I would have said I couldn’t survive living the kind of life I lead now. Now I see how incredibly blessed I am and I end every day by thanking God for another day to live, to experience, to love, to laugh, to exist. Even in this broken down body- I exist. And I hope I never lose sight of how precious that blessing is.


Kathy Marie is a happily married 43 yr old Mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”

A Spoonie Story: Kathy Marie

Kathy Marie

I just decided to leave yet another “support” group for chronic pain… because all too often there is a subtle, and sometimes not so subtle- tendency to try to one-up another in terms of pain. “Oh I have EDS- you don’t know pain until you know EDS pain” “Well, I have CRPS, you don’t know pain until you know CRPS pain” “I have Fibro- and that trumps EDS and CRPS- I’m in pain 24/7” “Well I’m in pain 25/8- beat that” and on and on. Gawrsh it’s so tiring and annoying!

Kathy Marie



Experiencing Pain

Pain is pain. All of us with CP conditions know pain. We know it intimately. We experience pain levels that would have “normal” people dropping to the ground in agony. And does that make us better than anyone else? Uh no- it doesn’t! I’m so tired of the constant battle to compare and be the #1 Pain Warrior. Just battling the pain alone makes me exhausted. Why should I have to “prove” my pain is “more” than anyone else’s? Frankly- I hate that ANYONE suffers from chronic pain, at any level.

I hurt. I hurt a lot. All the time. In fact, after being awake for more than 72 hours dealing with a flare, I crashed yesterday and slept 17 hours. And I’m awake now- still feeling tired. Still hurting. And that doesn’t make me better than anyone else. It’s just my reality. And I am positive that other CP sufferer’s realities are just as painful, just as tiring, just as depressing. I pray for all who hurt. And I pray that we can be more aware of one another’s battles, and just wish each other comfort. Recognize, validate, support. There’s no possible need to be “the best” at it.


Pain is Life-Changing

I’m sad that it seems that one of the constants of dealing with CP is negativity and competition. I really hope to change the stigma that is attached to CP through my writing- maybe I can’t change the worldview, but if just one person says, “Wow, I never knew pain could be so life-changing” then I have done my job.

Yes, pain IS life changing. And a good amount of that change is scary, and dark, and horrible, and maddening and lonesome. But some of that change- some of it is good. And precious. And miraculous. And life affirming. And when you think of it in those terms, it doesn’t seem quite so competitive, does it? Instead, it becomes a very personal and meaningful way to own your pain and apply what you have learned about it to other areas of your life.


How I Cope



I journal daily- sometimes poetry, but it’s mainly free-form journaling- just whatever comes to mind and let it all out; and lately I’ve been journaling ALOT about this Chronic Pain journey I have found myself on. Just the other day I leafed back to the beginning of one of my journals and I read something kind of similar to today’s frustration. That journal was 6 years old.

I have taken a huge leap of faith and begun my own blog, “Blessed- My Chronic Pain Journey” on Facebook, inspired by the Spoonies For Life Support Group that I am a part of. I’ve been writing forever, but I always poo-pooed the idea that it was ever “good enough” to publish. I posted in the Spoonies support group a shorter version of what you are reading now, about my decision to leave another Facebook support group due to the sense of one-uppery (is that even a word lol? :-p ) and competition among its members.

A fellow CP Warrior and writer, Tina Barzano, encouraged me to write an article for the SFL website… and then it was like a cosmic explosion happened and I realized that I could use all this life-changing pain for the greater good. I hope that this article and my blog inspires others as wonderfully as Spoonies For Life has inspired me. I find it amazing that at age 43 and at the most challenging time of my life, I am experiencing the joy of rebirth.

I firmly believe this all happened for a reason- my post, all the wonderful supportive comments, Tina’s gentle persuasion; I’ve been searching for some meaning to my CP journey, a reason as to why I’ve been cursed with such a life. After this experience, and the wonderful responses I received, not only do I think I found that reason- but I’ve also changed the word cursed… into blessed.


Namaste, dear ones. Thank you for inspiring my daily and hourly- and I wish you all pleasant days and peaceful nights.

I'm a Spoonie



Kathy Marie is a happily married 43 yr. old mom of 4- 3 girls and a boy- ages 16 to 26. Her hobbies include writing, reading, adult coloring pages, cooking and when health permits, hiking.

Kathy has been diagnosed with Fibro, RA, Hypothyroidism, Endometriosis, GPD (generalized panic disorder) Chronic Fatigue Syndrome and Depression.

On a typical pain day, you can find KM doin’ the housewife thing and taking frequent breaks to madly type down the thoughts that fly around her head regardless if they make sense or not. And often, they don’t. On a typical flare day, you can find KM curled in a miserable ball and repeating the phrase “This too shall pass” while she battles the twin demons of pain and panic.

All of what she deals with and experiences on those typical days becomes fodder for her blog “Blessed- My Chronic Pain Journey.”