Extreme Sports? Bring it on! (NOT!)

Inês, a Girl walking in the beach. Porto Covo,...

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You Jump, I’ll Watch
Extreme sport? Ha Ha Ha Ha Ha. You have got to be kidding me. I tremble at the word “extreme.” Sure, some of you will write about hiking mountains, and bungee jumping, massive triathalons and motorcycle marathons…..but for me? I’d be happy if I could walk every day at a consistent (medium) speed. Right now, with Fibromyalgia, I can’t even count on a slow, measured walk, twice a week, because of joint and muscle pain. I have no interest in “extreme sports” but to be honest, I never did and never will. I never was a big risk taker and the adrenaline I would get from fear alone is enough to make me pee in my pants. When I was much younger I once thought about sky diving or “parachute jumping” where you are shoved out of an airplane with some cord to pull so that the parachute opens. The trouble with me is, when I am stressed I forget things. Forgetting to pull that cord for that parachute? Not a wise choice. I’m staying home.

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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.

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.