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.

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The Sad Mom

wept

Image by the|G|™ via Flickr

I’m cold, terribly cold and I am not even outside in the twenty inches of snow we have. I’m in my bed with four comforters, a heating pad for my neck and shoulders and my feet are still freezing. I need to find those fuzzy socks that help tame the frozen beasts that are my irregular toes.

I’ve had Fibromyalgia for about five years now. In all this time I have tried many different medications and I have seen two or three Rheumatologists.  Still, no relief.  I am taking Savella and I am on the maximum dose and I swear it did work  for a while but now…..nothing. Does this happen with Fibromyalgia? I also keep getting new symptoms like my hands  and elbows and legs cramping in the middle of the night, symptoms that I was unfamiliar with but are now constant. I don’t understand this illness; perhaps nobody does.

Does Fibromyalgia encompass every symptom that has ever been heard of? Is it progressive? Why do I have more symptoms now than I did five years ago? I don’t know what to do. I don’t know which doctor to trust, if any. I also have an auto-immune disease called Hashimoto’s Thyroiditis which complicates my overall condition. I’m not feeling too lucky today; I’m just feeling sad, with no hope.

I have read countless books and articles, each one of them bringing a little piece to the puzzle but none of them fitting together to make a full-fledged picture. Ask ten doctors advice, you get ten different opinions. If you are lucky to get a doctor that doesn’t roll their eyes in disbelief, you consider that a win.

I would be open to new kinds of treatment , massage? acupuncture? diet? but I am not sure where to start. Not only do I not know where to start, I can’t pay for it even if I did.  Everyone “means well” and adds their opinion:  my mother says I should “just get out of bed and exercise more” when she doesn’t realize that getting out of bed is in itself is a painful exercise. My husband thinks I should go back on auto-immune drugs but I’m the one getting all the side effects and chemicals. Nothing seems to work. Nothing.

The only people who understand me are the people I meet in Fibromyalgia/Chronic illness chat rooms. I fantasize of a cure, an Oprah A-Ha moment but know that is unrealistic. I don’t like being the mom that has to be dropped off at the door of college presentations for my son and daughter, so I can sit down. I don’t like being the mom that sleeps a lot, when I can, and groans walking up and down our staircase.

I could easily start weeping but stopping would be that much harder.

Gray

Tropical Depression One upon being declared

Image via Wikipedia

In my 200th post (ok, I missed it, it’s really 201) I look back at who I was when I began, and who I am now. Many things have changed, many have stayed the same.I ‘ve always blogged about different things: pain, joy, food, celebrities, loss, egg salad, Food Network, chocolate and people. I blog about whatever I want and I don’t hold back; today my life feels gray and dark and tumultous.

The first bog I posted was tentative and scared; the name of my blog itself (hibernationnow)speaks volumes. I was a frightened and sick bear cub that wanted to burrow under blankets and hide, away from people, from symptoms, from pain, from life. I’d had enough of various illnesses and I just couldn’t deal with it anymore. Since writing had  been a passion in high school, I decided to take a chance and try once more, I decided to blog on-line. For me, it was a very bold  first step; I hadn’t written anything substantive for more than 35 years. I started with one post, here I am today. When I don’t write in a while, like now, trouble is brewing.

Having  chronic pain  is not an easy thing to deal with because it in itself is so unforgiving.  I have to consciously say out loud  ” this is not my fault. ” I have also learned from my blogger friends that “pain is pain” and that I can’t compare my pain to others nor should I diminish it. I give this group of women in the chronic pain world a lot of credit, they will hold you when you need it and tell you the truth when you deserve it. From them I learned that my pain is no greater or no lesser than anyone else’s pain. I hurt, therefore I am.  I am now owning my pain.  These women in the chronic pain community have given me support, information and emotional good cheer. We keep each other afloat and when one of us is down, the others rally around with gentle hugs. If the world could be run by this group there would be no war.

In the past year there’s been hospitalization,  various autoimmune drugs (and their evil side effects)  asthma, broken ankles, fibromyalgia and a thyroid with the beat of a listless, dull, old  gray-blue pidgeon. I was so nervous about my last routine round of blood tests that I had a full-fledged anxiety attack and needed to take a Xanax  but alas I was too far gone and it didn’t help.

For the past three or four days I’ve had excruciating pain in the small of my back and in my legs. Sitting, standing, sleeping or walking, this is a whole new arena of pain that I have never experienced. What is wrong with me? Why is this happening? What’s the matter with me?  In this tumbled world of chronic illness I don’t know where this particular pain is from. Is it a side effect from the medicine? Is it a pinched nerve? Is it something new and horrible?  Inside, you groan, “oh no, not again….” and still it continues. I am feeling depressed and ill at ease; I am now a stranger in my body and also, my mind.

My husband of 22 years has been unemployed for more than a year now. I’ve handled it well until recently but I think I am at a breaking point. We have a son who is a senior in high school and a daughter who is a junior in high school. The stakes are high at the moment, there seems to be a new challenge every day. There is chaos on top of chaos.  I’m trying hard to hold on but I can feel myself slipping. Perhaps my new pain is telling me to breathe, to slow down, to let the stress go. I’m trying.

I am in the eye of the storm and the world is whirling around me and I am stuck in the middle, unable to move, wanting to scream out but being incapable of screaming. There are so many things to do and so many emotions that it feels overwhelming.    I am stuck in pain, in conflict, in existence; I need to breathe, to find time to breathe and sit with music as my therapy and Advil by my side. Soon, I will ask for help.