UPDATE: Hashimoto’s Thyroiditis and Fibromyalgia, 2011

Various pills

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I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses  for over four years, with three different doctors and probably over 15 drugs in some combination or other.

I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.

Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.

Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the  brown overstuffed pillow.  The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.

I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number.  I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.

It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.

I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia  know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty,  and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.

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We Didn’t Ask For This (FIBROMYALGIA)

27/365: fractured reality/grace under pain

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.

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

Fibromyalgia? Auto-Immune Disease? Chronic Pain?

Oh me, Oh my. All of the above and then some. Diagnoses dished out like those colorful candy buttons on a long roll of white paper. Whatever Dr. I see gives me another diagnosis. I’ve taken Cymbalta when the Dr. thought I had Fibromyalgia from the tender points she pushed on my body. Now, that technique is not valid for diagnosing the illness anymore.  After that I went to an auto- immune specialist for the Hashimoto’s Thyroiditis and the new inflammatory disease he discovered.”You are a very sick woman” he droned.  I’ve been on Methotrexate, I’ve had Epiglottis, twice (severe throat pain is an understatement), and I fervently pray I never, ever get it again. I’ve been on Prednisone half a dozen times, Vitamin D, Synthroid, Plaquannel, Trazadone and more….

I was put on Cellcept (“the medicine that has the least amount of side effects”) to replace the Methotrexate (that landed me in the hospital) and after a month I couldn’t stand the extreme intestinal side effects (“only 8 percent of the people get it “). Lucky me!! I wrote to my Dr. and he said “give it another month” because I don’t think he believed how bad the side effects from this drug really were. I begged for some sort of stomach aid but he refused. “Give it another month,” he intoned flatly. End of discussion.

I’ve been off Cellcept for a week and a half and I am still suffering from the same severe intestinal side effects I ‘ve been having for two months. I wrote the good Dr. and told him I was coming in (as in squeeze me in) because the side effects were so overwhelming I couldn’t leave my house. “Oh, it must have been the Cellcept” he said.  (ya think?) My bad. He took me off the offending drug and promised that in 2-3 days I would be much better and all the symptoms would disappear. It’s been 6 days and counting…..

He did prescribe medicine to mask the symptoms and  when I take the meds they work, but alas, when they wear off, it’s really bad news. I can’t live like this. He threw around words like endoscopy, I added silently colonoscopy, what else? I see a trip to my Gastroenterologist in my very near future.

It’s been three years now since I started on this bumpy ride of chronic illness and I’m not much closer to a cure (I know there is NO cure), resolution.  I swing from wanting to get off all medication and trying to find the right one (the third’s the charm, right?).  I’m waiting a few more days and then I will, once again,  attempt to repair my own physically fragile life, to ask more questions and demand answers. Nicely.

Any suggestions? Any genius Doctors?  If I was incredibly wealthy I would head to the Mayo clinic but I don’t have that kind of money. Any rich donors? (just kidding).  I will also go to the natural pharmacist and discuss with him what might help instead of all these toxic medications I’ve been on. I know though, that genius Guru Dr. has another medication in mind for me so that’s in store for me soon, but not quite yet.

I’m done, pity hour (or 15 minutes) are over. I’m not going to think about it until next week, when I CAN TRY and do something about it. Have to go now. Guess where.