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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Pop Cop: Jay Leno, I Used To Like You

Jay Leno was the man of the people. Down to earth.  Affable. A big lug.  Liked cars. Big, expensive cars. Tons of cars.  I used to trust Jay Leno but with all the press about him and Conan, I don’t anymore.  I thought Jay Leno’s interview with Oprah would somehow, some way, redeem him in my eyes and in the eyes of others.  She skewered him, lightly, with the gentle grace that only Oprah could pull off. Like a James Frey redo.  She asked questions in a fair, even way but somehow he couldn’t quite get his act together. He whined, he expressed NO remorse about Conan and said he never talked to Conan personally nor does he plan too.  He could have somehow come out of this mess a little less dirty, a little less oily but he didn’t.  The Oprah interview showed him as a cold-hearted celebrity, needing fame more than friendship; greed over greatness.

He COULD have stepped down and made way for Conan. I was never a big Conan fan to begin with but after this brouhaha he started looking a lot better. I watched Conan O’ Brien for the first time in my life; it was humbling. The show  portrayed Jay Leno as the rottweiler and Conan as the poor, abused, puppy. When I watched Conan I felt sad; when I watched Jay I felt angry. Here’s the reason why, according to Jay Leno “ratings” are what counts, according to Conan, life is about way more than that. I agree with Conan, there’s more to life than ratings. There’s kindness and doing the right thing.

Kudos to Jimmy Kimmel for appearing on Leno and “sucker-punching” Leno. Kimmel was straight and to the point and actually said to Jay Leno (and I am paraphrasing) what many of us were feeling. “You had your chance, you had the show for 16 years, it’s just you and Mavis and a lot of cars, you have 18 billion dollars. Conan and I are family guys, we have families. Leave us alone.” Those remarks made a direct hit to our hearts and seemed to bounce off Leno like a boomerang.

After that Jay Leno should have stopped, checked his incredibly large ego at the door and said good-bye to NBC and The Tonight Show. He should have left graciously instead of greedily. He wouldn’t give a little bit and I don’t think he’s the nice guy that he used to appear to be.

Have you learned nothing about the world? How many more billions will make you happier?  Doing the right thing may be very different than doing things for ratings. There’s kindness, there’s being a good man, and then, there’s karma.

I’ll stay with Letterman, who even if he is acerbic, is smart, quick and honest. Jay, I used to like you but I don’t anymore. If I could predict I would say that a lot of people are with me on this. Even when you go back to NBC to the time-slot of your choice, it may feel very, very different  and you deserve whatever you get. And then some.