I was thinking about how we don't have a ramp in front of the house, just one in the garage, so I haven't been out with the kids for their bike rides or walks in almost two years. We go other places than outside our front door when I want to go.
I did burn a bridge with my former internist this week and let him know some of how he made me feel and the consequences of that, sending him the documentation I sent to the neurologist. Predictably, we got the letter of doom today. That's okay. I feel better for expressing myself. I waited one year too long to do it, while still under his care and repeatedly enduring the same criticism for being sick. When a patient runs through four rounds of antibiotics for the same infection and a doctor is both unconcerned and blames the patient for it (his other women patients but not men patients also report blame), I'd say that another doctor is a better choice. I haven't been able to bring myself to go back to him for anything after he called the gallbladder problem a cardiology problem and refused to help. That was over six months ago. Still, missed diagnoses are one thing--people are human. The blame for what was absolutely beyond my control was the problem. I mean, blaming patients for getting respiratory illness and pneumonia? I avoid people who are sick! I hate being sick, hate it.
Why did I accept and internalize what he said rather than finding someone else? I guess anyone new is an unknown. I found my new rheumatologist from others who work with him, and he's just not like that. He's empathetic and good at what he does. My gyn isn't like that; my urologist talks fast but isn't like that. I always wonder when the other shoe will drop with a doctor. I liked my internist for a long time and recommended him to others even after he said this to me, telling me I was making myself sick, bringing it on myself, and that if I were more positive and more spiritual or something I would get well. Add that to a number of bad decisions after that based on such beliefs, and it was borderline malpractice.
And thus Frida attempts to enter a new mindset. From emails, insurance records, and my calendar, plus my memory of course, I was able to reconstruct a chronology of my symptoms with more detail than I'd imagined I could do. Who knows, maybe I can turn it into an essay someday, or a few of them, like Laura Hillenbrand's about her chronic fatigue.
My high fever is back with unremitting, severe bone pain in multiple places, feels like I have a stress fracture in my femur (I've had them) as the only symptom, while I am on day 8 of an antibiotic. I have a feeling I may need antibiotics for a long time. What am I doing blogging? There's nothing else to do except circle the house in pain, which I am doing a lot on foot, briefly pausing to rest on a chair or the bed, despite the extra pain from that, because I cannot bear being still (well, I am now for a while). Yet I can't *do* anything while walking around. I stop to do the dishes and start circling slowly again because I can't stand to do anything. It hurts too much to do something focused. I can't shower. I can't concentrate on paperwork. I haven't been able to sleep except in brief snatches the past few days. I can't follow movies, though the documentary on bears was interesting. When I'm sitting I want my hip and leg in one position.
I am bored out of my skull and sick of this. I am sick of being sick. I keep circling back to this post to add more. My mind is going, Dave. Daisy, Daisy, give me some pain relief, true, something something something about a scooter built for two.
Ableds are mean. I need crip friends right now. One relative regaled me with a story of someone with MS who will be at her house this weekend, who has a "positive attitude" about it and "you'd never guess she has MS" since she enrolled in a clinical trial for a couple of years and now shows no signs of it. She keeps asking me if I don't need to exercise more (hell, I'd like to, I'd love to) and telling me I need to "fight it with all the strength I've got." Conversely, I've learned fighting things with all the strength I've got makes me very, very ill. I can do it when I have to do something. Pacing works a lot better, and rest when I'm in acute pain. I am tired of her criticism. When I was in the midst of acute pneumonia, she told me to exercise more--she had acute pneumonia a few weeks before herself (I probably caught it from her), and she couldn't exercise then! I am dreading this weekend, having to deal with the MS patient who has the "good attitude" and cured herself through positive thinking and who just "goes and goes" and has a lot of energy and loves to cook and blah blah blah. Good for her, that really is great. But she's not sick right now, okay? I am. I am increasingly realizing that she is thinking of someone who is more disabled as having a negative attitude, while she sees people who are capable of doing more as "fighting it" and "having a good attitude." My husband's had a couple of talks with her already but I think needs to have a very long one.