Monday, November 24, 2008

A few things

Life has been pretty busy and/or insane since my last few posts. The most noteworthy is that our car had a tree fall on it...This is good and bad. See, I don't drive. Not because of my illness, not for lack of wanting to, but more because up until recently it was never necessary. I grew up in a suburb of NYC where there was decent public transportation, and pretty much everything I wanted to do took place in the city anyway where there was no need. I was going to get my license before I moved to Boston, but that summer my mother had two brain aneurysms, so the summer that was intended for license acquisition turned into the summer spent in the neuro-icu. Once I moved to Boston, I was living in Beacon Hill and there was absolutely no reason to drive since a) I was in college and living on campus and b) everything was in walking distance.

Since then I've moved a little outside the city (I live outside of Cambridge now) and getting around on the MBTA holds less and less appeal. It can take around 1+ hour to get to a doctor appointment, a lot of places I want to visit are outside the city, I don't like being exposed to so many germs, and the MBTA has been sucking.

So how does this relate to our car getting hit by a tree as a good thing? I've been taking driving lessons, however the aforementioned car is a standard. Now, I can handle learning how to drive in a fairly metropolitan and congested area, and I can handle learning how to drive a standard, but the two at the same time? Not a good idea. So I've been learning to drive on an automatic, and while our poor crushed car is waiting to be fixed, the replacement car is also an automatic. So I can get in all my three point turns, parallel parking and backing up that I need to before my driver's exam (which, ideally, will happen either before the end of the year or my birthday in January).

I really think that driving will give me back a lot of the independence that I lost when I got sick. I think it will be a good thing.

In other news, I explained everything to my psychologist re: what happened with the psych evaluation and my psychiatrist, and she strongly recommends that I get a new psychiatrist, which I agree with strongly. In addition she feels that the psych evaluation was completely off, as she's been seeing me for a year now and has never seen any evidence of a somatoform disorder...In her opinion, the psychiatrist that was doing the evaluation probably based the bulk of the evaluation on my MMPI score, and apparently there is controversy regarding the MMPI and illness and "fake bad" results. She feels that while the test results might show that the taker (being me) showed evidence of a somatoform disorder, the reviewer wasn't taking into account that the person taking the test had a disease that mimicked the bulk of symptoms that someone with a somatoform disorder would have. I mean, hell, if an alarming percentage of people taking the test who were institutionalized came back as "malingering" it totally makes sense that a person taking it with a chronic physical illness might come back as having a somatic disorder. While this won't necessarily help with the disability case, I do at least feel vindicated.

It's difficult to explain. Post diagnosis I am extremely aware of my body and any errant aches or pains I may have, because honestly it scares me. It scares me that some organ might be affected or that I have something else arbitrary happening that might warrant a diagnostic test that is high risk (like say, a CT-Scan with contrast) but in reality I need to accept that a) life is unpredictable and that I can't wait for some other shoe to drop and b) there will come a time where I have to go outside my "safety zone" and that my stressing over it is not making things is probably making them worse. To interact with me on a daily basis, you'd be able to tell I am somewhat limited (mostly in terms of my intolerance to extreme cold and my strict diet) but it is not the definition of who I am...and that's the important thing.


Anonymous said...

I think that I have mastocytosis. I have been sick for a year and a half and been to at least 30 doctor appointments. I've seen an ENT, pulmonologist and a GI doctor. My family dr gave up on me and told me to move on with my life. I just came across masto and my symptoms seem to fit really well. I mentioned masto to my GI doctor and he told me to stay off the computor. Is there a specialist or a test that I could ask for? I need help. I think I hate my life right now but I don't want to give up.

Bridget said...

Anonymous - You would want to see an immunologist about this...If they feel you fit the criteria for masto they will do a blood serum tryptase test and a 24 hour urine histamine...from there they should be able to tell if your body is releasing an overabundance of histamines. In addition, if you have skin lesions that look like urticarea pigmentosa, they will do a skin biopsy.

For me, I have systemic masto + urticarea so I had all three tests done. In addition, it's common to have a bone marrow biopsy done, though i haven't had that because my tryptase and urine histamines were so high that it made the test redundant in my doctors eyes.

if you go to and contact one of the mods, they may be able to help you find a doctor in your area who is more familiar with masto, since most are not.