Over the weekend I read a well-written article in Health magazine by a woman suffering from an autoimmune disease. What I particularly liked was her thoughts on the inner-frustration, the fact that unlike other patients of well-known illnesses like cancer, you don’t have something growing inside of you to be angry about, to blame, to focus on; the thing attacking your body is you. It’s your own body that’s harming you and hurting you and slowly killing you in some form or the other and for the most part no one knows why or how to stop it. You have no one to blame but yourself and you don’t even get a ribbon or a badge or a parade or a march. In fact, most of the time, you’ll struggle to find a doctor who’ll give you the right diagnosis, if you find one that believes you at all — like a flashback to the days when PMS was all in our “pretty little heads” and the doctor would pat us on the head and smile patronizingly.
O.K. Maybe some of that was my thoughts, but it was inspired by the article.
I’m feeling a mood drop today. I was already kind of down when I got up this morning. I’ve reached a point now where I’m always in pain and it’s just not tolerable. Nothing over-the-counter works. Just getting out of bed and getting on with my day is enough to trigger the pain and I refuse to wallow around all day in bed and not get anything done. I know that way just leads to a messy house, smelly litter boxes, and deeper depression. I even insist on getting up on the weekends and showering and dressing and all that crap. But the pain is always there and it gets worse depending on what chores I do. Even driving to work is a killer on my arms and hands and even my legs.
I’m still struggling to sleep at night. Of course, I want to sleep from 10pm to 3am and 6am to 9:30am. This really isn’t an acceptable sleep schedule and it leaves me feeling unrefreshed, tired, fatigued and sleepy.
I saw the Rheumatologist this morning and what a waste of time that was. Really I almost started crying in his office. Basically he told me that he’s not going to give me anything for the pain. He said the only real way to treat fibromyalgia is to get the depression and the sleep disorder into check; he said if he gave me anything for the pain, I’d just build up a tolerance for it, so there’s no point to that, but if I’m less depressed and well-rested, the pain will be reduced. So he’s sending notes to my GP and psychiatrist. Whoopie.
Then on top of that, it turns out that my insurance hadn’t pre-approved the visit, which the office neglected to tell me before my arrival, which they set up, not me. So now, I have to get my GP’s office to get a referral for the visit I’ve already gone to that I didn’t want to go to which was a waste of my time to go to anyway.
Now this afternoon, I have an appointment with the GP to discuss the fact that the ambien doesn’t appear to be helping me stay asleep. When I made the appointment, I told her nurse I also wanted to discuss pain management but the nurse kept trying to wiggle out of that. Somehow, I don’t think we’ll be discussing anything stronger than Tylenol either.
I really don’t want to come off sounding like a whiner. I don’t think I am a whiner. I think I put up with a lot of pain before I actually complain about it. I think I have to be suffering pretty badly before I mention it. Once I’d had a migraine for a month and felt like my brain was oozing out of my ears and still wasn’t going to go to the ER when one of my co-workers forced me to go — it turned out my blood pressure was 163/108. So when people ask me the question, “how’s the pain compared to your worse pain ever?”, that’s what I have to compare it to…and only because I can’t remember what it felt like to break my arm when I was a toddler.
Here’s the thing, over the last two weeks, 95% of the time, what I’ve been thinking about is the pain. I think that’s the more important question. Is it affecting my life? Yes. Am I still pushing forward? Yes. But I have to. My Dad’s cousin once asked me how I manage to go to work when I have such bad migraines all the time — I go to work with migraines so bad that I’m throwing up in my trash can, but my parents taught me that you don’t call in sick unless you’re dying — and I told him that I have to because no one else is paying the bills. I don’t live with my parents or a husband or anyone else who’s going to take care of the bills if I don’t get paid. The electric company isn’t going to care if I have chronic migraines or IgAN or fibromyaglia and can’t pay my light bill. Dinner doesn’t magically get made nor do the groceries get magically shopped for; in fact, there’s no food delivery in my town, not even pizza. If I don’t go to work, then I don’t get a paycheck, and if I don’t do the errands and chores, then it doesn’t get done. So, despite the pain, I have to do it.
On a scale of 1 to 10, 10 being the worse pain I’ve ever felt, it has to be a 9 or 10 before something gets done and it’s usually a 7 or 8 before I feel so bad that I need to ask a doctor for help. Just once, I’d like to be able to translate that to the person asking the question, because obviously my tolerance for pain and their tolerance for pain aren’t the same. Just once I’d like them to feel what I’m feeling and know what I’ve endured, because I don’t think they understand. In fact, I think doctors and nurses today have very little understanding or compassion for pain. I think they’re numb to it.
And today I just feel incredibly trapped. I don’t think I can stand this if this is my life for another 50 years. This isn’t the kind of pain I want to “suck up” and live with for the rest of my life. I thought my life was barely tolerable when it was just going to be tediously boring for 50 years, but 26 million agonizingly painful minutes is just too long and too depressing to think about.
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Wow, that’s some powerful stuff. I’m not sure what to say. You sound like a very brave and strong woman, and I’m so sorry that you’re forced to go through so much pain. I hope that Pugly and the bunch are taking care of you!