Tuesday, June 25, 2013

Another Day, Another Doctor.

It's always a pleasure, going to the rheumatologist. And by "pleasure," of course, I mean "pain in the @$$." The biggest complaint the rheumatologists had was that they didn't like all the antidepressants my psychiatrist has given me. Because, you know, there might be side-effects or something. Assuring them that my psychiatrist is eminently well-qualified to figure such things out himself had little effect. Sigh. So, as usual, following one doctor's orders got me in trouble with another doctor. Same old, same old.

Since I am a researcher, I always say yes when they ask me to participate in studies. That being said, emailing me four hours before the appointment to say, "Oh, by the way, can you come in earlier to donate 6 tubes of blood for X study" is not very polite. Seriously people, you couldn't have asked me, oh, say...yesterday?? I have a hard time believing you didn't know about your blood-collection deadline yesterday. But, you know, whatever.

Since I am a "Skinny white woman," and have been on IV steroids, I get to go have my very first Dexa bone scan to make sure that, at my young age, I do not have osteoporosis. Why my race has anything to do with my bone density I don't know. But, whatever.

Additionally, since my short-term memory is practically non-existent, I *also* get to go in for a 4-5 hour long memory test so that they say I have no memory. Fun times at Johns Hopkins.

I finally remembered (by writing it down) to ask how lupus causes gastroparesis. Turns out it's a relatively rare manifestation of the disease in which the autonomic nerves (i.e., the nerves that do things automatically...things like heartbeat (mine is screwed up), blood pressure, (also screwed up) and stomach function). Apparently my brilliant immune system has decided to attack such nerves. Lovely.

The only "good" thing that came of the appointment is that I was given permission to start exercising again. Apparently I can "just ignore the joint pain" because exercise will not make the arthritis worse. So I guess that's nice; I no longer have to be a couch potato...if I ever get the energy to get off the *#$! couch.

Fun times, my friends, fun times.

P.S. You know you've been to the laboratory too many times when you sit down and say, "No, I don't faint when my blood is drawn, no, I'm not on blood-thinners, and no, I am not allergic to anything you are about to use," before the phlebotomist has time to ask any questions.

7 comments:

  1. Thin white women statistically have a higher risk of osteoporosis than others do, I have been told.

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  2. If you don't like going to the doctor so much, then why do you say yes to participate in research studies? Just say no...the money sure isn't worth it, I know, I've done them too. Maybe they did call you to ask you to come earlier the day before, but given your memory issues you may have forgotten? Just a thought..LOL. I forget entire conversations which really get me into trouble with my wife. Hard to be a guy with Lupus. I know exactly what you mean about the exercise stuff. I say I'm tired and hurt, they say to exercise, I say I'm too tired and I hurt, they say I wouldn't be so tired and in so much pain if I would exercise more, I say but I'm too tired to exer....you get the idea. This my friend is why they call it "Practicing" medicine. Be strong and be blessed Sam.

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  3. Try water exercise, it takes the strain off the joints but gets you in motion. It was my rehab from back surgery many years ago, and my ongoing means of staying mobile after being re-injured. There are all types of programs, something somewhere ought to be a good fit. Good luck!

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  4. It sounds like the problem is not 'going to the doctor' so much as 'breaking in new doctor.' You have to explain to them that if there were a simple solution to your health problems, you would already have used it.

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    1. I'm going to start bringing a baseball bat to appointments.

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  5. Hi. I'm a lupus patient with gastroparesis AND I'm a former patient of a certain lupus guru at JH. I'd love to talk to you about your (our) experiences there... and beyond. Reach me on my blog at www.nascentniknud.com or by email at theblandau (at) gmail (dot) com.

    Honestly. Some of your experiences (particularly at JH) are exactly like mine. And btw, all that calcium they've got you on is the WORST for gastroparesis.

    Meanwhile, don't sweat the dexa scan. It takes about 1 minute and is 100% non-invasive or painful. Keep fighting the good fight!

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    1. Eek. Sorry, I just sent you an email. I didn't see this comment! The DEXA scan was painless, but showed osteopenia. Boo.

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