Monday, June 11, 2012


Over at my other blog, I often discuss the importance of having, and our happiness with Sweetie's own Lyme literate doctor (LLMD).

Well, I personally wish that I could find a primary care doctor for myself who was spina bifida literate!

Now, as a person, I'm really happy with my current primary care doctor. He's a good guy. But I don't believe he has a terribly extensive grasp on what it means to deal with a patient with spina bifida. Nor do any of his colleagues, I think.

And I don't even go to the doctor terribly often. But when I do, I'd really appreciate it if the medical professional I am dealing with had a better understanding of what I go through, or how I manage my life on a daily basis as a person with spina bifida.

Over the past decade plus I've been:

* sent to the hospital for possible meningitis, when in fact I just had mono.

* told over the phone that there appears to be no reason I need a have a handicapped placard for my car

* had multiple UTI's, usually in groupings (many in a row, then a long clear patch of time, then many in a row, etc....). The nurses and doctors always being extra careful with me about how I will provide a urine sample for them (answer: give me the dang cup and tell me where the bathroom is. No biggie. Geesh!)

Currently I'm in a "frequent UTI" phase. (Sorry if this is TMI about my UTIs). I'm on the same antibiotics I've been prescribed for the same thing within the last few months. It's always worked before. But now? Not so much. I'm not feeling like the infection is being resolved this time.

Hmmm.... You think maybe I may have become resistant to the same antibiotic over and over? That's what I think. I also think a quick call into the doctor to report this, and ask for a switch to a different antibiotic should be all that needs to happen. But, no. It's not that simple. Of course, it can't be that simple. They want me to come into the office again, for an exam. Because the antibiotic they gave me should be able to tackle the bacteria, they say. And it's not. So they need me to come in. Ugh!

I don't know. It just seems to me that a doctor more knowledgeable about spina bifida - and the frequency with which SB patients can and do get UTIs - would be more reasonable about trusting what the SB patient is feeling and agree to just switch the medicine. Simple as that. I swear that's happened for me before in my life. Just give me the right medicine! Really, it's not that far fetched to see how I may now be resistant to this antibiotic I've had over and over again in recent months.

And anyway, I do think, little by little, I am feeling better. Saturday was not good. Sunday, a bit better. Today, better still. And I'm just about half way through my prescribed meds. Maybe it's just taking a bit more time this time around. I don't know.

At any rate... we'll see in the morning how I feel. I really don't want to go in for this exam, nor do I want to rack up my medical bill anymore than it already is (can anyone say Most Awful Insurance Coverage Ever?!) But, on the other hand, it may be good to go in, and get this dealt with appropriately. Ask some questions, get some complaints off my chest. Figure out, in the grander scheme of things, what may be going on.

I'm just saying... it sure would be nice if the doctors I deal with most often had a better, more rounded understanding of the birth defect I live with everyday.

1 comment:

Mossy said...

Even when I was a teen, most kids with spina bifida died young because of the associated problems with hydrocephalus. You're probably of the first generation that's able to be fully functioning in adulthood, due to shunts.

I suggest you contact Children's, specifically the Spina Bifida Clinic. They will continue to treat anyone, whom they've seen as a child with a chronic problem, and should be able to offer some advise.