Life With Fibromyalgia And Hashimotos Thyroiditis 12.20.2014




I really had no plans to write this but I noticed a few people were reading an update of mine from 2011 on this very topic and I just couldn’t let that happen. Believe me, not much has changed but I thought I owed it to you to at least change the date and update you with my thoughts.Hashimotos Thyroiditis is an autoimmune disease of the thyroid. Many people have this condition in conjunction with other illnesses.

Having Fibro and Hashimoto still sucks. Big time.

No surprise there, right fellow sufferers? My number one complaint is not having any energy and if one more person tries to tell me to exercise more (including my new Rheumatologist) I will want to slap them silly. I should have stayed with my old Rheumatologist,  he loved me best but I just couldn’t go see him in the city anymore. I didn’t have the energy to take

 

trains and buses and taxis and walk up two flights of stairs and down two flights of stairs. It’s not as if I dropped him, he was so sweet and understanding, Fibromyalgia did.

I now see a not so nurturing Rheumatologist in town and her motto is basically “Get over yourself and exercise.” She must know my mother.

I KNOW exercise is good for me, for us, but it sounds better than it is. Fibro Flare, really? I hope you have more discipline than I do because I need tips on how to haul my hurting rear out of my bed and on to the treadmill.

Anyone?

I KNOW it is not good for us but I COULD stay in bed 24/7 because of the exhaustion. Couldn’t you?

View image | gettyimages.com

I’m on Savella twice a day, I was given a choice between Savella and (Fibro Fog, can’t remember the other one’s name but it is widely used and known to put on weight) so I chose Savella. It helps. Is it a cure, ha ha ha. NO. There is no cure, as we all know.

I’m now considering myself LUCKY that I got these illnesses when I was 50 when I hear stories of young when who get these illnesses in their twenties. I feel for you young ladies, I truly do.

What’s the worst part (parts) of Fibro for me? No memory and no energy!

No memory. None, Nada, Zilch. It scares me to pieces. It really does. I go upstairs to get a sweater and as soon as I go up a short set of stairs I am turning around in one room and then another NOT KNOWING why I came upstairs.

View image | gettyimages.com

Yes, it freaks me out. Anyone else have this too? I need reassurance.

That, and having no energy except for one or two errands ( if I am lucky) every day or every other day. Buy the way, between hearing loss and forgetting I have young adult children (especially my daughter) who still makes me feel like dog shit when I don’t remember what she told me. “I TOLD you that…” and she may be referring to a year ago or two weeks.

I feel bad about myself as it is, but wow, I feel worse after one of those angry, “how stupid ARE YOU? looks.”

Researchers say they made a discovery about nerve pain, but to tell you the truth, it’s just words on a page. There has been no further development to HELP US. If you have found something, please let me know.

As for now, do the best you can, give each other support, I’m here, lots of Fibro Friendly people are on-line. Some of my best friends started with a now defunct Fibromyalgia group but we have stayed friends, close friends. (There is no image for a group of people in pain and smiling, I tried.)

I wish you all good health, good luck and better things to come in 2015.

With love and empathy,

Always.

 

Free Write Friday- Kellie Elmore

Rhythm, a sequence in time repeated, featured in dance: an early moving picture demonstrates the waltz. (Photo credit: Wikipedia)

They tell me it was a memory I never had, but of course, I am not convinced they are telling me the truth. I am so sure I remember reaching my long, skinny fingers and stroking the soft texture of the speckled leaves on the ground. Wasn’t it just yesterday that the leaves had been vibrant dancers in, yellow, red and orange, pirouetting for us from the upper limbs of the trees, beckoning us to admire them? Our group of friends sat on the dry ground in a circle and we clapped our hands heartily for their lovely show and whistled our love and appreciation. What a lovely dance they put on for us! We talked about it at dinner at the Inn, all of us feeling so lucky to have seen the beauty of art and nature coexisting. We felt blessed.

When we awoke the next morning, after inhaling strong cups of coffee and eating our sugar dusted, apple-cider doughnuts, we headed back eagerly for the early show of the dancing leaves yet something felt different to everyone. We all felt unsettled, out-of-place. It seemed that overnight, all the glorious leaves had slid to the floor, wet, subdued, stepped on, laying on the ground, curled up and crumpled, dead, on a pile of the old, worn, rusty bridge that should have been torn down forty years ago. The bridge had no use anymore except for photographic opportunities, no cars could travel on it, people felt unsteady walking on it. It was unsafe.

You and I, darling, had danced beneath those breathtaking leaves, we waltzed over and over again but you said you could NOT remember that. Well, I remembered it, with perfect clarity of young love, breathtaking beauty, birds sweetly chirping their melodious songs, and our picnic lunch. We waltzed underneath the bright sun, many years ago. I don’t know why you don’t remember it because it is so clear in my mind and SO IMPORTANT. I don’t understand, it meant so much to us then. Please try to remember, at least something, of that magical day, for me, sweetheart, for me. You look blankly at me or am I looking blankly at you? I don’t remember much of anything at all anymore. I was young once, that I know but weren’t you too?

How (NOT?) to Remember Names

Image via Wikipedia

Names? NO. Faces? ALWAYS.

No tricks, no memory, just really good and prompt improvisation. I have met many people and I used to have a very good memory and would remember someones name immediately and forever. Not Any More. Whether it is age, Fibromyalgia fog, hormones or any combination, it is really hard for me to remember someone’s name (unless they have made a really, special impression on me.)

When my son was little and I got introduced to a team of little guys “Hey, Buddy” worked well. “Sometimes “Hon or Sweetie” came in handy for my daughter’s little girlfriends. But now? I can meet you, shake your hand AND repeat your name out loud and there’s a good chance that in two seconds I will have forgotten it.

The only thing that makes me feel better is that I will always remember your face. Always. Even if I have not seen you in 35 years. My husband still cannot believe that we went to a bakery when we lived in Massachusetts, walked in and I said “Nora?” The woman turned around, she seemed a little flustered, but sure enough she had been my teenage friend in seventh grade back in New York. It had been about 35 years since I had last seen her; at a sleepover birthday party in her parents’ apartment.

So, before you get insulted that I do not remember your name, rest assured when I see you 20 years in the future, in a different state or country, I will know that I know you, by your unique, impressionable, face.

One Year Ago Today

Image via Wikipedia

Seriously? No clue. What were YOU doing on this day a year ago. Right, You have no idea. My point, exactly.

Help Wanted: Celebrity Spokesperson – Fibromyalgia

Those of us who suffer from Fibromyalgia (FM) get a lot of grief. Not just chronic pain, of which we get a lot, but grief, from uninformed people.  I have Fibromyalgia and Hashimoto’s  Thyroiditis, an autoimmune disease also known as Connective Tissue Disorder.  I, like so many other  Fibromyalgia patients also suffer from Fibromyalgia Fog, better known to the in-crowd as Fibro Fog. We begin a sentence and then forget what we want to say. We go from room to room looking for…..what? We forgot.  We start again. My children roll their eyes when they claim “I just told you that story” because they have and it sounds new to me. They could probably tell me the same story tomorrow and who knows if I will recognize the story or shake my head in new wonder. My sister sometimes complains that “you told me that.” I’m sorry, I believe you.” It may be hard for you to keep quiet once in a while and just let it slide but it is also hard not to take it personally and get your feelings hurt too. It’s not something we have control over, like muscle pain or stiff joints.

Apparently “Doctors” agree we “feel the pain” but the cause itself has people stressing out and arguing. Isn’t it just a total bitch that there are still people out there that think we are all whiney, crazy, uninformed, stressed out crybabies with the need to please?  Of course, they point out, we are mostly all women, not all, but mostly. Ignorant Doctors: be skeptical if you want to but stop judging us and read the NEW research, all of it.

I was diagnosed nearly five years ago. After a routine check-up  by my internist, that had my thyroid levels completely out of whack and my massive Vitamin D deficiency, she shrugged her shoulders. “I feel like I have the flu, without the fever” I would cry but she didn’t listen to me. My internist examined me and told me “there was nothing she could do,” and she clicked her designer high-heeled shoes and tap-tap-tap, left the room abruptly. She left me alone, sobbing on the exam table, unable to get up.

Since then I have seen Rheumatologists who do believe that Fibromyalgia is a real disease and that it is indeed painful. I now go to a Rheumatologist who is even “Fibro Approved” which means he is known for his sensitivity to both our illness and our feelings.  The very fact that he is kind and soft-spoken is a pleasure, he even returns calls promptly and is not overly aggressive to try new things, but is patient to see how I am reacting to one drug, perhaps changing the dosage, not the drug.  My Rheumatologist before him answered by-email only and said sternly “Fibromyalgia is a lazy diagnosis” and barked at me to start taking strong immunosuppressant drugs, one after another. Each drug had horrific side effects that left me unable to leave my house for two months.

If I could, I would only go to a Rheumatologist who actually HAS Fibromyalgia, for the very same reason I always chose a woman to be my Gynecologist and Obstetrician. It’s nice to have familiarity, empathy and understanding. Imagine this, if all the men who worked in the financial area were stricken with Fibromyalgia, a fairly debilitating disease, would it be a more credible illness to the naysayers?  Wouldn’t there be a sudden outcry for immediate research, more funding demanded, results and ultimately a complete cure? Would you still be saying that they were overstressed worry-warts? I think not. If male business executives got Fibromyalgia, stocks for Savella, Cymbalta and Lyrica would go through the roof. Why are there still people thinking that men are more credible than women? Look at all the research for heart disease for men and very little, if any, for women? Women get heart attacks too and the symptoms are very different but we don’t hear a lot about that either.

I don’t wish this illness on an enemy much less a friend or someone I admire greatly. I just would feel so much better if we had a  famous spokesperson with Fibromyalgia to champion our cause. I mean that sincerely. Is there any celebrity in the world that has the same symptoms and wants to represent us? You would help hundreds of thousands of people all over the world.  Believe me, I LOVE and admire Oprah and don’t wish Fibromyalgia on her but IF she did have it, (or any high-profile celebrity: Ellen Degeneres, Dr. Oz, Meredith Viera, Barbara Walters, David Letterman, Conan O’Brien…) wouldn’t the world sit up and listen more carefully and intensify the search for a cure?  Try calling Oprah a whining crybaby. You couldn’t and you wouldn’t even dare. Maybe there will be a time when someone champions our cause, our invisible illness. In the meantime, wouldn’t it be something if we heard: “Next On Oprah, My Struggle With Fibromyalgia.” Maybe then we would get the understanding, empathy and research we so desperately need.

We Didn’t Ask For This (FIBROMYALGIA)

As a Fibromyalgia patient I need to explain a few things that the general public doesn’t understand. Actually, there are things that WE don’t understand but we are clear on one thing. This is NOT in our heads. Whatever crack pot thought that one up was clearly not a pain sufferer. We didn’t ask for this disease that makes us  live in a state of chronic pain.  Believe me, no person would want this every single day of their lives, no person would choose this.  We live our lives on the edge of our seats for two reasons: 1) because sitting one place for more than three minutes will hurt and 2) we can’t make plans ahead of time because we don’t know how we will feel on any given day.  People ask me to do things and I always use the same line: “Let me see how I feel.” Of course I have said it over and over again but people who are not patients tend to forget.

Which reminds me: forgetting things, we start to speak and stop, we go upstairs to get something and then not remember what we are looking for.  No, we are not feeble-minded, nor are we crazy, old, senile or menopausal. (Ok, we could be a mixture of things) There is something called FIBRO FOG which makes us forget, makes us as cloudy as fog rolling in to San Francisco. It is not our fault. Do you think I like looking like an absolute fool? Don’t you think it stings when my children say “I just told you that”or “Mom, I’ve told you that story 100 times.” I’m sure you did but “Fibro-Haze” got to me once again. I honestly don’t remember the last time I had a totally lucid conversation. I seem to drift half-way through. My husband recommended that I take stimulants, the pills given to people with ADHD. Thanks, but I’m on a lot of medications (that don’t help) as it is. Please don’t play doctor, you can’t imagine how many people do that to us. We know you mean well, it just doesn’t help.

If patients, had wanted this stubborn illness our homes would be filled with Fibro-Friendly items. We would all have an in-house masseuse. The refrigerator would be filled with our favorite soft foods,  soup, pasta, cheesecake with an apricot glaze, soft and chewy brownies that won’t activate our TMJ. We would all have extra-king size beds so we don’t have to bump into our partners in the middle of the night. Hair stylists would fluff out our thinning hair to make us feel better about ourselves. Our bedrooms would be equipped with huge 3D, High Definition television sets, the exact height that is comfortable for us so we don’t strain our already tense and knotted necks and shoulders. All houses would come with nurses and aides, to drive us, do the laundry, cook dinner and attend to our every need.  Our medicine cabinets would be filled with newly invented “Miracle-Meds”, an innovative medication that actually helps and relieves all of the pain. Not cocktails of useless pills that don’t do anything except make our stomachs, and IBS,  feel all sorts of crazy weird.

Chronic pain, with no relief is horrible. Please don’t talk to us like we are  psychologically challenged. There is nothing wrong with us except that we hurt. We hurt constantly with no relief. We have pain that is relentless, pain that is constant, pain that we have no choice but to accept it in our daily lives. We also don’t want your sympathy, but we would love your understanding.