Are You Even Aware, Do You Care? (ChronicBabe Blog Carnival)

woman

Image by Alessandro Vannucci via Flickr

Dear Doctors,

Fibromyalgia Awareness Day is May 12, but I bet mostly people who suffer from this debilitating illness know that.  There are people, fellow doctors even, who still think this is all in our heads. That IS the most insulting thing of all. Do you think we would choose this way of life? On purpose? Do you think that we would want to feel pain in every muscle and joint in our bodies for the fun of it? Maybe we just want attention, is that what you think? Do you know that I was diagnosed with two chronic illnesses within a matter of months and that menopause was the catalyst? Did you know that it was menopause that turned my body inside out and sideways, plumped up my lower belly and shattered my metabolism?  Do you know I eat less than the average child but I don’t lose weight and walking around the block twice is considered a work out?

I am going tomorrow to my third Rheumatologist to see what he has to say. He’s local, convenient and since I have had such different points of view from previous doctors I’d like to add yet another opinion to my massively, confused, Fibro Fog memory. That is if I can remember what we talk about which is as likely to happen as Christmas in July. I will try though, I will write things down, I will do intensive listening. I want to hear what you have to say. I wonder if you realize that a Fibromyalgia patient making an appointment to see you is not simple at all? It isn’t, we have to get there too and that is always a work in progress.

Did you know I saw a famous Rheumatologist for years, only to find out later, that the strong, immunosuppressant medications he prescribed could have destroyed me? That the medications he prescribed for me in his fancy office with his “Best Doctor Awards” on his walls, are only supposed to be used to protect a vital, organ? I didn’t know that either until another Doctor, actually two, told me.

Awareness is not just acknowledging a disease or many diseases; it is also imperative to take the accompanying emotional distress that it brings too. It’s no longer just me, it’s me and my shadow. We bring baggage, physical and emotional because many of us have dealt with this elusive, enigma of a disease for many years. Please, bear with us.

Even if you mean the best, you might not want to say “I know how you feel” because unless you are a patient, you don’t.  You can’t walk in my aching shoes, the soles of my feet are rigid, hurt and are on fire, right to the top of my head that aches at times with horrendous headaches, pounding me like turbulent waves on stoic rocks.  Are you aware, Doctors, that when some of  you treat us chronic patients like drug seeking  heroin addicts you demean us? You take away any sense of self-respect that we once had in the past? We know you try to help us but please understand how we feel. We feel pain, we just want some relief, once in a while when we need it the most. Try and understand that, we’re not looking for a quick high or to be comatose on life-altering drugs. We just want to be able to breathe without pain for a short time, ONLY, when we need it the most.

I’ll leave you with one thought. We know you try to help make us feel better. Just remember a moment of compassion, a light hand on our shoulder, an extra second of your smile means a lot, especially when we feel we have so little. If your son or daughter had the same disease and our same symptoms, would you treat him or her any differently? If you have to think about it, please consider treating us, like you would them.

Thank you very much for your time.

How I Stay Healthy??????

Considered a father of Western medicine, Hippo...

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Give Us A Break……

There’s a fundamental mistake here: you are assuming I am healthy and I’m not. Along with thousands upon thousands of other patients I have a chronic pain disease and an auto-immune disease (not to mention others: IBS, narrow angled glaucoma, interstitial cystitis, painful and swollen joints, flare ups and….oh, is that too much? Because I could continue and I could also go blind instantly but that’s another post altogether.

First off, I am really not complaining just commenting and venting. “It is what it is” and it could be a lot worse: pain is not life threatening so I am grateful for that. TRULY. However, Fibromyalgia and other chronic pain disorders ARE extremely painful (and no it is NOT in our minds.) That is totally insulting. Also, there is little to relieve the pain, at best, and certainly no cure. Live with it? Not comforting. If this affected more men than women you bet there would be more research and no tiptoeing around about pain medication. The latest information frenzy that has all chronic pain patients up in arms (and my mother who saw a show on TV!) is that doctors and the media now are becoming increasingly hysterical about dispensing pain medication to THOSE OF US WHO ARE IN PAIN.

To me, it’s idiotic. I have a Doctor who writes prescriptions for Vicodin like they are gummy bears, lots of gummy bears, but when I tell him I have taken one and it doesn’t seem to help the pain, he insists it’s the only pain reliever he can dispense. Does that make any sense to you? Because, Vicodin itself is highly addictive and he writes prescriptions for them all the time YET he won’t write a prescription for half the amount for something different, like, I don’t know, Tylenol with Codeine? What am I missing here? A different class of pain killers? I am not swallowing pain killers for a high, I have tried Vicodin (one pill) on two separate occasions when I was in dire pain. It. Did. Not. Work.

I’m beginning to feel like the chronic pain community should an old-fashioned revolution. All the patients talk about it but I don’t think all of us have spoken directly to the doctors about it. I have but it does no good. Do you know why other patients are reluctant to be honest and I don’t blame them? Because we have to deal with the raised eyebrow, and the ‘are you a junkie quizzical smirk.’ I want to find a Doctor that HAS Fibromyalgia and see what they say!!

Do you think if we have addictive personalities we will misuse codeine and not Vicodin? I KNOW I don’t have an addictive personality, believe me I would have had plenty of opportunities to have one but it’s just not something I would do, want to do or will ever do. Shouldn’t doctors be able to differentiate patients from junkies?

Think about the Hippocratic (Hypocritical?) Oath that says: “First, Do No Harm.” You are causing harm refusing to treat illnesses that are incredibly painful. How about a different warning label? USE ONLY WHEN IN DIRE PAIN. That works! I don’t know anyone personally who would abuse it but I am sure there is a percentage of people who would abuse anything. Don’t punish us, for them. I certainly wouldn’t want to take anything every day if I didn’t need it. My doctor had me on two different medications to prevent pain that didn’t work and I ASKED if I could stop them, he hesitated and I then convinced him and stopped. I WANTED to use as little medication as possible. Frustrating.

In terms of exercise I walk slowly to try to get exercise and if I had the extra thousands of dollars I would probably buy a membership for a gym that has an indoor pool so I could swim but that’s money a lot of us don’t have lying around. My special diet? I usually eat healthy meals, chicken,veggies, salad, pasta, red meat a couple of times every month or two. However, my special chronic pain diet, for comfort since there is no pain relief usually involves Cadbury Creme Eggs, Yodels and Egg Salad Sandwiches. Sometimes comfort, even though it is not a pain reliever, might just make you feel a little bit better emotionally since no one is trying to help us physically.

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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.