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.

Advertisements

The Fabulous Fibro Spa and Resort

HibernationNow and Phylor’s Blog present: How a spa would be designed and managed by fibrologists:

Dear Guest:

Welcome to the Fabulous Fibromyalgia Spa and Resort! Whether you are staying in the main building or one of our cottages (the Pain Villa, the Fibro Fireplace, the Befuddled Bedroom, or the Nerve Damage Madness), you will find that we are equipped to handle any situation that may arise. While we don’t leave a chocolate on your pillow, you will find 2 Advils or Aleves and specially designed heating pads specifically for those tender 17 points. We know there are days when you don’t move around all that much, so rather than steps or long walkways, you will find escalators similar to those used a airports. Please hold on to the sides as we know that some of you may have balance issues.

You can check in at whatever pace feels comfortable to you. As memory problems can be an issue, you will be given several key cards (room number stickers available upon request) in case you should misplace one or lock yourself out of your rooms. At 4pm and again at 9 pm, our special welcome cocktail, the Fibro Fizz will be delivered to your room.

Each suite or cottage contains a memory foam king-sized bed, a large bathroom with tub and Jacuzzi. We have an array of unscented toiletry items available upon request at check in or with reservation. Beside your bed, you will find a white noise machine with peaceful sounds such as waves lapping the shore, rain-gentling falling, and other soothing sounds from nature. At your writing desk, you will find a supply of post-it notes in different colo(u)rs and patterns, pens, and stationary for making notes. There is high-speed wifi, HD cable, and a list of more than 200 movies on demand at no extra cost. You can search the movie database by genre, stars, director, screen writer. We are always open to suggestions for additions to our list that can be made available within 24 hours. Providing these in-room movies has been a big hit with our guests. If you don’t feel up to going to one of our many social areas, you can relax in the comfort of your own space and refresh your memory by re-watching classics, give your mind, rather than your body,  a workout with the action pictures (yes, some folks do move that fast), and since laughter is great medicine, our list of comedies is extensive.

For an additional $50 a night you can upgrade to one of our luxuriously padded rooms, conveniently located next to one of the dining areas. With walk-in bathtub, Epsom salts on demand, and doubly padded walls and floors, these rooms appeal to the fall and/or trip crowd.

Every hour is medication cocktail hour at the indoor and outdoor pools. Our staff will gladly prepare whatever combination of medicines, vitamins, and supplements suits your personal needs. Some of our more popular concoctions are the Savella Sling with just a hint of Tramadol,  the Lyrica Laser prepared with or without Xanax, the Gabapenten Gobbler, best served with a dash of morphine and the Oxycontin Overboard that contains over 7 medications, and 10 supplements.

Our dining facilities that include a formal dining room, casual café, and coffee bar are open 24/7 for your convenience. Our chefs have created a luscious array of soft foods for people with TMJ. You can choose from menu items, or request the kitchen make something special for you. Room service is also available 24/7. There is no need to get out of bed, the restaurant has a key and tipping will be added at the end

Our spa has all the latest in massage and relaxing techniques including hot stone therapy, therapeutic massage, breathing and relaxing exercises. We are always happy to deal with your bunions, your broken toes, your mangled feet. Included in your package are several free extras we call our Fibro Fix-up: a manicure and pedicure, hair cut, tricks to hide those dark circles from sleepless nights, and the opportunity to consult with one of our Fibro Fashionistas for the latest in lounging and sleeping wear. Our full Fibromassage offers gentle touching of those inflamed areas all over your body. We especially cater to the 17 point system of pain centers. Our staff has won over 25 first place ribbons at the Annual Feeling Fibro Massage and Comfort Olympics.

A recently added feature is our Fibro Fitness team. These well-trained and dedicated Fibro-Fit individuals wheel the exercise equipment to your room, carefully encase you into the fat-melting machine of your choice, and the machine does the rest. For those of you who don’t need to shed a pound or two, we have a special cheesecake and ice cream diet to ensure you get those needed extra calories. You can have these special meals delivered to the privacy of your own room, or you can join others on the thin side of healthy Fibro-Fattening Bistro.

One of our more popular features is the Xanax Room. Open 24/7, you can order the strength of Xanax you need to let those feelings of panic and anxiety just slip away. And the price is right: free Xanax! Adjacent to the Xanax Room, the Ambien Pre-bedRoom prepares you for a cozy, sleep-ful night. There are teas, comforting lavender and other scented oils and candles, and helpful staff members who will accompany you back to your room, and tuck you in for that nice, long sleep you have been looking forward to.

We have a fleet of electric scooters should you feel like a leisurely ride along one of our specially designed walkways that sweep themselves clean, so there is nothing along the route to jar your bones. We pride ourselves on our gardens, including the Zen garden should you feel the need to meditate outdoors, and a complete herbal garden for creating our special teas such as:

Morning Eye Opener, Afternoon Nap, Evening Relaxation, and Bedtime Comforter.

We have hotel hosts and hostesses posted every two feet so that when you lose your way because of Fibro fog and get lost, someone is always there to turn you around and point you in the right direction.

This is only a small sample of the information will find among the pages of your welcome kit. Please feel free to ask questions as many times as you need to while acquainting yourself with our facilities. Our aim is to give you as much pain-free, fibro fog-free time with us as possible. You are free to participate in any of our organized activities such as Bend and Stretch or Sitting in a Chair yoga classes, make use of our arts and craft room, or, simply lay back in the gentle hug of your bed, and let us do all the work for you.

Thank you for visiting the Fabulous Fibro Spa, we hope to see you again soon.

hibernationnow.wordpress.com and phylorsblog.wordpress.com

for Chronic Babes Blog Carnival