Gratitude (Chronic Babe Blog Carnival) November

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Most everyone in our caring Chronic Pain community knows that the last three months has found my family renting a small room in a small hotel having been harshly betrayed and ousted from our house by termites, carpenter ants, and completely rotted wood. Everywhere. What started as a simple kitchen renovation became the nightmare you would imagine in a horror movie. That horror show was mine. At the very same time, my husband ruptured his Achilles Tendon while running to catch a train. It’s like one of those scary novels some people read so when you are finished reading you can clap the book shut and be thankful that the book is over and you can return to your own life. Not this time.

Facing emotional, physical and possible financial ruin for the house (no, insurance did not pay a dime) I had to adjust to our new circumstances and yes, I did cry a lot. But, in order to maintain my sanity and hold it together I decided, with a lot of pushing and prodding, that I needed to focus on something, anything positive. I was grateful that we didn’t have life-threatening diseases to deal with in a hospital. Truly, I gave thanks for that every day, sometimes every hour because while the situation we were in was uncomfortable and sad and draining, no one would die because of it (although we all felt terribly violated). I felt bad for my daughter, a senior in high school, who had to room with her parents on an uncomfortable cot in the same room. I felt bad for my husband, on crutches, non weight-bearing, hobbling around the room. I even felt bad for myself who got the brunt of everyone’s dissatisfaction. I managed. I even found the strength to drive my son to his first day of college and back, all by myself; I even felt proud ( because if you knew my sense or lack of sense of direction I’m lucky to be back home now.) IF I HAD TO, I COULD DO ANYTHING; a great lesson to learn.

Of course I wept, and I was cranky and felt sorry for us but that wouldn’t do me any good for three months, nor would it help my family, especially my husband who was bed -ridden or on crutches for most of the time, unable to work. I needed to know that, despite my own intense pain and flare-ups from Fibromyalgia and an auto-immune disease (Hashimoto’s Thyroiditis) I could do what I HAD to do. I was grateful I could do it even if I paid for it later on. It didn’t matter. When my husband had to be pushed up a hill in a transport, I was the one who did it. I don’t know where I got the strength but my mind and my guts and my determination became my strength and my shaking knees and shoulders made me even more determined to get up that hill. I managed and it felt good, my husband smiled and was impressed and I was happy too. All that talk about doing things for others? It is so right on.

I was grateful that I could help my husband, he who has always, ALWAYS helped me. I wanted to show him  that I could help him too. I’m not saying it was easy, it wasn’t. But, it was well worth the effort for the internal strength I got from within. It was worth seeing the smile on his face, the kindness of strangers who helped me manage the steps. It is a person that has heart and knows kindness. I’m convinced now more than ever, you either have it or you don’t.  You don’t necessarily need to know people for a very long time to know who they are. They will show themselves to you, very quickly, just watch and listen.

That new study that showed people had their own friends and considered Facebook Friends, also friends for support and trust? I am totally grateful for all my different types of friends because they can not be grouped, in just one group. My Facebook Friends, they are a special bunch, very dear to my heart. I hope I have told them enough times that they truly believe it. Gratitude? It comes from within. I sprinkle bits of my heart in my e-mails to my Facebook friends. From mine to yours and back. I’m grateful.

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

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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.