Thursday, July 2, 2009

Ramps and Bridges

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.


Katja said...

Do you really have to see the good attitude MS woman? Do you really have to talk to your mother-in-law?

I'm so sorry to hear about your pain and illness. I really think the only thing to do is relax into it, not fight it - you already know that doesn't work.

FridaWrites said...

I don't have to, but I'd like to spend time with the kids over there on the holiday. Before I got my scooter I didn't go over there much because I was in too much pain by the end of the week--it was a nice break sometimes. I got really upset rather than just ignoring her a few weeks ago, when she said multiple things that just bit.

The good attitude MS woman is probably a lovely person and probably understands from her own personal experience that one does what one can while one can--she doesn't necessarily share these beliefs herself. I just feel like I'm being compared to a sibling who achieves more. When I'm in remission, I do a whole lot too.

Thanks for listening--your words really mean a lot. Yep, relaxing into it makes it go away faster and leads to faster recovery.

yanub said...

Frida, I'm sorry to have been such a poor correspondent lately.

I think we women are socially conditioned to accept any failures as our personal fault. We get that whole stupid Eve story rammed down our throats when we are still in diapers (and if it wasn't Eve, then they'd be hauling out Pandora or some other woman as the root of all trouble) and are expected to shoulder guilt for the many things which are just plain suck but no one's fault. This is how a doctor can justify giving substandard, even abusive, care to female patients. And even other women are just as bad, if not worse, in inflicting magical thinking upon people with disabilities.

I'm glad you are fighting for yourself. And that your husband is on your side. Now, if your husband could maybe scrounge up some lumber so you can get out of the house?

FridaWrites said...

Yanub, it's okay! I know other people still have busy lives way beyond the web.

I think you're right about the way some doctors approach women. When I was younger, I would change away from a doctor like this, male or female, after one appointment. I guess it was more difficult to do with a doctor I'd been going to almost a decade.

I'm sure my husband would do so--it's just been hard for him to take care of the necessities in the past couple of years, and a lot gets left undone. He could use occasional help from others a little more--he rarely gets a break.

Elizabeth McClung said...

I hope that the fever has broken and if not that you are still sane, and if not, that it breaks. (I don't know how we go on, but we do, which surprises me always).

Thank you for blogging, thank you for writing this down. I am sorry about the mother in law, and the positive attitidue MS person as while subjected to it often I had never made the connection that the weaker I get, the less caring I must be - yet this is how I am treated, I could not figure why the worse the condition, the more paperwork, or the more even the agencies blame you for not calling the able bodied, for not following up on everything when you are at your worse, not going to two new GP interviews a day, spending the other hours calling around for specialists and new GP's and of course spending hours reading research for cures because you are in agony or fatigued or in so much pain that thinking a full sentence is absurd.

I am always puzzled at what these specialist think - I mean if I trained that long to do my job and I was crap at it and got people documenting how crap I was at it, that would bother me - how do they have the endurance to do all the training if they are so apathetic and uncaring? It is a puzzlement (I refer to your internist). Are you sure we do not share specialists?

It is not your fault. I am not going to say you are inspirational because I'll let the AB do that - but damn it - you are still going, you are tired, you are fatigued, but you are still going and I know how much grit your teeth and try to stay sane that takes. I don't know how else to encourage or honor you. Will think on it.

FridaWrites said...

Elizabeth, thank *you.* The fever's gone away, thank goodness, and the joint pain is better--not great but I'm just inside the tolerable range.

You are very right--the medical demands and administrative demands increase so much the more sick we are. I've been told to go to the urgent care or the ER once and did not have the energy to go--I improved rather than got worse, but at a certain point others have to make decisions or help out. We just can't or can only do so much, and that's all there is to it, though the paperwork doesn't stop.

Maybe we do share specialists--I remember you liked yours at first too, and that he was helpful at first, or appeared to be.

I think PWDs have earned the right to use the term "inspired" every time they like--they know the history of the term and don't just bandy it about. "Inspiro" means "to breathe," and you certainly keep me going; I hope I do with you as well.