Last Wednesday evening I wasn’t feeling great, thought I was just tired from working hard for several days. As I got ready to go to bed though, I noticed that the tiny aches I had all day were now accompanied by the feeling of a fever. I checked, and sure enough, it was 99.7 degrees. I’m usually below the normal 98.6, so this was confirmation that something was awry. I had no other symptoms though. Only the oncoming chills and other joys of fever. My mother, in her infinite wisdom, suggested it was probably a urinary tract infection. My own brain was burning up and could not process such a simple cause of fever. I grabbed some Tylenol and was on my way to shivering under my hugging covers. It was the first of a few nights plagued by fever dreams.
The next morning was no better, temp up to 101. But, no doctor’s appointments available until Friday at 10:45. A little backstory on the doctors. When we moved here in 1995, we used a family practice nearby and saw Dr. C. In 2002, that practice stopped taking the insurance we used. We found another family doctor, Dr. R, not far from Dr. C’s practice. Things went relatively well until Dr. R retired and moved away in January. Sometime before that, Dr. C joined Dr. R’s practice, so we planned to see Dr. C again after Dr. R retired. Bing, bang, boom. Another doc, Dr. E. R. did join the practice when Dr. R retired, so there are two docs still in the practice. Got it? Good. Well, Dr. C had no appointments for Friday, and Dr. E.R. was out of town, BUT she had a fill-in doc for her, so I would see her. Not a real problem, since I had not met Dr. E. R. either because I had only planned to go to Dr. C, but new doctors are really annoying for veteran crips, gimps, and/or generally unwell folks. At least they are for me, and I’ll bet I’m not alone.
So, why are new docs so annoying for us veteran gimps? Well, let me use Friday’s appointment as an shining example. First the computers were down. Where are we anymore without computers? Apparently far from knowledgeable about how to interact with patients. More about that in a moment. I gave my urine sample to the nurse and she got my info. My 102.5 fever from 7:15am was down to 97.9 by the time of my appointment. Got to love the Tylenol. No major symptoms otherwise, at least none that I was able to sense given that most of my sensation stops just below my chest. If there is pain, it’s got to be big time.
Fill-in doc comes in. She’s shorter, tiny, maybe 40s, Middle Eastern. She scans the room to decide whether my mom or I am am the patient. I say I’m Laura and she proceeds to squint her eyes at the paper where my last name is scribbled so that she cannot read it. She asks my mom to read it and we realize her confusion and tell her our last name. Whew, good to go. She introduced herself, I think, but I still can’t remember her name. We’ll call her Nervous Nellie. With the computers still down, she knows nothing about me, but mainly asks about my symptoms – if I have any pain, headaches, etc. I explain that I would not likely feel any pain in my back, etc., but that I have not had any headaches. She notices that my fever has gone down. Yes, I took the miracle drug, Tylenol. Ah, she acknowledges. She finally states that the sample does show bacteria, an infection. Nervous Nellie is tentative. She wonders why I have an infection. How do I catheterize? I inform her that I do intermittent catheterizations, that about 12 years ago I had surgery that enlarged and rerouted my bladder and that I cath through a small opening, or stoma, just below my navel. Nellie says, “Oh, so you don’t wear a bag or anything?” Nope, sure don’t. Then she asks if I use sterile catheters. Yep, sure do. I’ve been catheterizing for almost 20 years, I keep things very clean, but almost 20 years of cathing will invite a few critters now and again. It’s par for the crip course, and common knowledge among the medical crowd I might add. Now, my super duper bladder surgery is not that common in the medical crowd, but it has made my life so much better and has cut way down on infections. I can catheterize independently while in my chair and you can imagine the freedom that affords.
Nellie then suggests that maybe I should cath more frequently. Eh, maybe. I’m so vigilant about my care, people. Really. I’m one of those people who actually drinks the requisite number of glasses of water EVERY SINGLE DAY. It’s sickening to be around me sometimes. Well, I keep myself company pretty well, but ya know. So, I kindly agree that maybe an extra cath would help. She wants to palpate around my bladder. Sure, why not? She touches me more gently than any doc has probably ever done, just barely palpates, all confused by a scar here or there and I explain. She never actually felt anything more than the surface skin. I know palpating and this was not it. She was so scared. Poor thing. I really was nice, I promise. After twenty years of folks poking and prodding me, I almost have a welcome sign printed on my forehead: “Come on down, you’re the next contestant on ‘Check out Laura’s Bod!’” Truly, very little is sacred, you get used to it.
Then we talk about the antibiotic. There are three antibiotics I’d prefer not to take because my stomach hates them and then I hate life. I tell her and we agree on a different one. Then I update my medications. Now, I am only on five medications regularly and one of them is temporary. But I hate listing them to some docs. They judge, I know they do. I love my regular docs. They know me and they know why I do what I do and when and how and any other combination. They know I am intelligent, capable, responsible, and truly do what’s best for me as much as possible. They know disability and they know me. They know that disability and I make a good match. Disability and I are friends; we have an intimate bond and we work together and against each other, depending on the year, month, week, day, and sometimes minute. It’s life. People, even docs, who really know me know this. Strangers have no conception of how this could work.
Finally, we recap. Plenty of fluids, more frequent caths, Tylenol for a day or two more only, call if it doesn’t get better. Cool. She’s written the prescription and we are ready to get going. Then, BAM. She says, “What’s your history? Was it an accident?” Seriously, people. I think I should write a grant application for a public service announcement on how to ask crips why we’re crips. If even doctors can’t figure it out, we have some work to do. I tell her, “no, it was transverse myelitis.” She says, “Oh,” or something like that. She appeared to know what transverse myelitis (TM) is, and I did not explain. I used to have to explain to medical professionals. Now more of them know TM. But here’s the deal, good people. I know I present as someone who has a spinal cord injury (SCI). TM and SCIs are similar in their outcomes. But of all people medical professionals should not assume I have an SCI. They know there are any number of reasons people can be wheelchair users. But that handy dandy computer wasn’t working. I was all charmed out by this point. Had she asked for my history at the beginning of the exam, I would have been in a better frame of mind about the whole thing, but I was ready to go home and feel better (or cath a few more times), not satisfy her curiosity.
I am indeed feeling better now and have had a fun story to tell. But I get tired of explaining sometimes, especially when I’m sick. Meet me halfway. Assume I have knowledge about my body. I have a degree in human services and one in sociology and then I’ve got a Ph.D. in being Laura Overstreet. Meet me there and we will get along. Even if you don’t know any of that, assume that I’m competent about myself until I prove otherwise. I promise your patients will love you more.
Two important points. First, I was interviewed for New Mobility magazine’s cover story on the 20th anniversary of the Americans with Disabilities Act (ADA). Check it out here! Second, I’m taking a short blog hiatus to prepare for the class I’m teaching starting next month. Talk to ya soon!