Help Wanted: Celebrity Spokesperson – Fibromyalgia

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.

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9 And A Half Minutes, Episode 1

"one second" exhibition

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Tick Tock, Tick Tock. Welcome to another edition of 9 and a half minutes. A place where I mention the things that annoy me. First up: SPAM. If you are going to send out this trash can’t you make the effort to spell “dear” CORRECTLY? It’s always misspelled and it’s in all  lower case letters :”hello deaer.” This bugs me. Not to mention that I get hundreds of junk mail every day and yes, I do, have a SPAM filter.  I am OCD about the amount the junk mail that I get so I need to check it and delete it frequently. It’s supposed to automatically delete in one month but that never happens. Every day I get the following suggestions: “buy drugs, enlargge your penis, veagra for womens, congradulations deaer, autimatic lottery winner”….just stop sending us this junk. Here’s my suggestion: ” go away, get losted, please, hun.”

Another thing that’s irritating is the call you get on a Sunday night from your favorite hairdresser, the one you found after years and years of searching. The one you trust implicitly. You finally find her and sure enough, one day you get “the call.” You know what it’s about, the minute you get the message “It’s Linda, from Tresses” on the phone. Deep in our hearts, women everywhere  know that the only reason your hairdresser is calling you at home at night is because she has fled her old job, stolen your chart and is working somewhere else. My dilemna: I love the way she does my hair but she has joined a salon that I fervently despise. It’s not the end of the world and yes, a mere annoyance but these things add up.

It has been a horrific couple of years and many of us are suffering the consequences of a bad economy. The idea of a vacation used to give me something to dream about, to look forward to. Key word: USED TO, past tense.  Even though it may not be financially feasible, it was something to dream and fantasize about.  Thinking about flying someplace warm in the middle of winter or early spring used to make me so happy, an inside secret I tucked away in my heart. Now? Thinking about flying makes me anxious, another mood elevator crashes to the ground (no pun intended.) With the media screaming about terror alerts and bomb threats, who wants to fly now?  Flying used to be fun, an exciting adventure. Now, you wait in very long lines, several times over, experience huge delays, body checks, shoe checks and most importantly, basic primal fear, anxiety and paranoia. I’d have to think it over for a long time before I would fly again and then, I would literally have to be sedated. Where’s the joy in that?

What is there to look forward to now? The economy stinks, the unemployment rate is ridiculously high and everyone seems to have less money or no money at all (with the exception of perhaps the super-rich which is even more annoying.)  The world, as we know it now, is a scary place. I know things take time but even I am losing patience. The country needs some good news, some great news. We need something, anything to feel good about our lives; I don’t care what it is. Give us a glimmer of hope, a tidbit, a really solid fantasy.

It’s the first week in November and we had sleet, snow and a power outage for six hours the other day. At this point, I’d even welcome some global warming: as in the warming up the country variety. If you hadn’t guessed it before the other thing I despise with a passion is winter. I would love to sleep straight through to spring. It’s cold and dark, scary and we all get sick; especially for those of us with chronic illnesses and pain. I know life is not perfect, believe me, I know. I also know you’re not supposed to “sweat the small stuff.” But, when the BIG stuff is all bad, the little stuff just adds an additional amount of worry and annoyance;  it makes us cranky. Very cranky. I’m not Andy Rooney, I’m just little ol’ me but I’m seriously pissed off. Join me next week for another edition.

What Is Not There

The Lower Manhattan skyline shortly before 9/1...

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I was thrilled to be going with my family and in-laws on a 5 day cruise to Bermuda, courtesy of my very generous in-laws. It brought back all sorts of memories that I hadn’t thought about for many, many years.  I remember that 12 years ago my parents treated my sister’s family and my family for a cruise to Bermuda. It was a family vacation complete with my parents, my sister’s family and us, and most importantly “the cousins.” Four little fresh faces, all shiny with excitement, a boy and a girl for both my sister and I: 5, 7, 8, and 10 who love and adore each other. After that trip, they would always be connected and they still are very much so today.

I have a photo that I cherish of my sister and I that shows our happy faces and wind-swept hair. Our brown hair blends together and although we look completely different, this photo just smiled “sisters” and love.

I remember 12 years ago we were all on deck as the boat pulled away from the dock.  There was yelling and whistling and waving, and total excitement; sometimes I wish life could have stopped at that joyous moment but we go on anyway as time wills us, forces us to do.

Twelve years later, my husband’s parents (who felt sorry for us) treated the four of us and them to a 5 day treasure of a vacation, again to Bermuda.  What a difference time makes and it passes so quickly you barely have a moment to stop and think. This time, when we pulled away from the dock, I went outside to look and cheer, and I couldn’t. I didn’t even think of this as a factor when I went outside but as soon as the boat started moving, I felt sad. It was so emotionally charged for me that it was surprising to me and so unsettling.  I couldn’t speak, couldn’t even cry, I just felt numb yet able to feel this horrible and powerful feeling of complete sadness. I went inside as fast as I could, not walking, not skipping but running as fast as my aching body let me. The skyline looked empty with the devastation of the twin towers. How could I enjoy the view when the twin towers were not there?   They were in the background of our first trip; there was nothing now.

It also reminded me in a painful way that my dad was not with us; he passed away 9 years ago but the pain felt fresh and raw  and stabbed me at different moments, like it did years ago. Time does not change that type of pain, it hides, it tries to fool you, but once someone dies that is special to you, life as you have known it, is gone forever.

It’s been a long year, of unemployment for my husband and the pain of Fibromyalgia and Hashimoto’s Thyroiditis for me. Add narrow angled glaucoma, TMJ, chronic pain, and a connected tissue disorder and other unresolved medical problems and that has been my life for the last, long, 4 years.

Back home now, we are enmeshed in back to school errands. Our son is a Senior in HS this year, our daughter is a Junior in HS. Next year there will be another change, that will be wonderful and heartbreaking and empowering and positive. Our son will leave for college, our daughter a year after. I am cherishing every moment that we spend together but I know that there will not be enough time for me. This vacation created new memories for the four of us, ordering room service, having dinner together every night, laughing. These are the memories I will cling to, in my heart, forever. Time goes by and I with it, looking forward, looking back, trying to ride the waves as they rise and fall, rise and fall.

A Warm Welcome For New Chronic Pain Members

Strelitzia reginae, also known as Bird of Para...

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Dear New Chronic Pain Member,

I won’t say “Congratulations” for being in this particular club, a club that we all wish we were not in. Life works in very strange ways. There are some things we can’t possibly understand and there are some things we just have to accept; chronic pain/illness falls into that category. Whatever you have gone through there’s a pretty good chance we’ve  all been there and back. At least, you have found the most supportive bunch of people I’ve ever known. Even though what we have in common isn’t exactly our love for food (well, that too) it’s nice to surround yourselves with people who truly understand. Trust me, it helps.

Yesterday I dragged my aching bones and stiff joints up the four stairs for a consultation with a different Rheumatologist/Fibromyalgia doctor, even four steps felt like a lot and the rail  on the wall  called my name; I let it. Unlike my old doctor this new human being seemed attentive and concerned, he didn’t smirk once, didn’t put me down at all. He even talked to me (and not to my husband which used to happen all of the time.) Most of all, this guy  seemed to care. He interrupted my exam to talk to a suffering patient and while I don’t think that’s good form, listening to his soothing voice and gentility made it alright with me. It made me feel that I could call him for questions or concerns, not just send him e-mails like the old dude.

For a patient with a chronic illness or multiple chronic illnesses, a good rapport with a doctor is imperative. Go to a doctor that will give you the gift of hope. I’ve been around the block a few times here, actually 4 years worth so please listen so if I can shield you from the mistakes I have made, please let me.

This is my story, while going through menopause at age 50, my body basically fell apart. I developed an underactive thyroid, aches and pains, high cholesterol and a kangaroo stomach pouch, as I’ve said before “without a joey.” After many mistrials with many doctors, four years later I am here.  My old rhuematologist used to growl and say “Fibromyalgia is a lazy diagnosis.” What was that supposed to mean? Did that mean I didn’t have it because I certainly felt like I did. Those of us who have chronic pain know it; we feel it, eat it, and breathe it. We live with it day by day, aching night by night. There is no question in our minds but a big question mark still for some doctors, the wrong doctors. If your Doctor does not nod his/her head appreciatively or with empathy, do me a favor, walk out.

Fibromyalgia get’s a bad reputation and while it cannot be cured hopefully it can be helped. I had at least 14 out of the 17 pressure points and I was still on a lot of medication. I like that this Dr. took me off things that he thought I didn’t need. NOTE to fellow sufferers: If you have Fibromyalgia or any chronic pain illness and high cholesterol like me, ask your Doctor about side effects from certain drugs. Four years into this I just learned (from my mother)  Zocor or generic Simvastatin causes muscle aches and fatigue. Ask your own physician or call my mom if you want.

I also have an auto-immune illness of my thyroid, called Hashimoto’s Thyroiditis. What this means is basically my thyroid cells attack each other and this illness too brings pain and fatigue as well. Also, something called connective tissue disorder as well as others:  TMJ, IBS, Interstial Cystitis, bouts of anxiety etc.

I have no illusions that I will be “cured.” There is NO cure for my illnesses.  I am thankful I have friends who understand how I feel. Fellow sufferers who know what it means when I have a flare up  when the humidity is high and I am like a limp, achey, dishrag, basically hung out to dry. I’ve found that people without the disease don’t know how to handle “us.”  “Get more exercise” says my mother. “Go to a nutritionist”says my sister.  They mean well, they just don’t get it and how could they? We live in a different world.

The image of myself that I used to have was of a helpless kitty, crying and lost. Now, it is a beautiful, graceful flower,  purple and orange and called a Bird of Paradise. It looks like a bird‘s open beak, colorful, strong with its head, firmly, bravely, looking up. I pray it lasts.