Tuesday, October 28, 2008

bladders and brains

today i had to have a cystoscopy...i was terrified since this was my first "major" medical procedure since the MRI that seems to have tipped off the maelstrom of masto symptoms. the idea of having a procedure that could set me off was frightening.

i took some premeds (50mg benadryl, 1mg ketotifen, 150mg of zantac, 2ml of gastrocrom) over the course of the 90 minutes prior to the visit. i was terrified. this was exacerbated by the fact that my husband had to drop me off at the hospital and park a few blocks away, so i was waiting by myself. then when i saw the nurse, she immediately got my protocol wrong, wanting to clean me off with an iodine based cleanser, using latex gloves, wanting to give me a opiate topical ointment...i started getting even more nervous because all of those things were iffy for me with the masto. He came in and explained to her that I was very sensitive, and we needed to use a different protocol and everything was somewhat better. i was still terrified. i hadn't felt my meds kick in (usually they knock me out).

my urologist was very considerate, telling me that I didn't need to have the test if I wasn't ready since there as the potential for my stress to cause problems. he was so nice, the nurse was so nice, and i was so terribly scared. then they allowed my husband in the room so we could discuss whether or not to postpone the procedure...they didn't put any pressure on me, they didn't seem frustrated that i might back out...it was so nice.

i was about 5 seconds away from backing out. the idea of shocking again was leaving me petrified. but then i realized that if i was scared today, i'd be scared next week (unless i possibly threw some steroids on top of my protocol) or the week after, so i should just suck it up and get the procedure done.

so i did. it was not that bad, especially since i had to have it done without any sort of anesthetic. my doctor was fantastic, explaining every step of the procedure to me as it went along, and then it was over...i'm not going to lie, it was painful when he used the second scope, but nowhere near as bad as i anticipated. thankfully my bladder looks perfect, no mast cells, no cysts, no cancer cells, nothing. so chances are the blood was either a uti or just something that happens. i had no white blood cells in my culture today, which leans away from infection, so that was comforting.

I was really proud of myself for going through with it. i had every opportunity to walk away from this mega scary experience, and i didn't. everyone told me it would be ok to postpone the cystoscopy for a week or two...but i didn't. i gritted my teeth and went through with it.


things are still a little off. i think sometimes i am verging on hypochondria, since i read or hear things and decide that it must be something that's going to get me too...i don't know if it's the result of years of misdiagnoses or getting slammed with a really rare disease, but i am always waiting for that proverbial shoe to drop...lately i've become fascinated with chiari malformations, and am convinced that that is something i need to have looked at. this isn't entirely baseless, since i've had abnormal MRI's for the past 4 years or so, but i'm not really experiencing any of the main symptoms (like headaches) but because i have a sore neck, i've decided that that must be the next thing to happen to me. that and the fatigue and sleep issues just has me concerned...unrelated to my latest medical fascination I have an appointment to see a neurologist, so that works out well. hopefully i am in fact a hypochondriac, as I really don't want to deal wit another disease. of course i can feel myself being hyper-vigilant now, so whenever i get any headache or neck ache i just decide that that's it, my brain is slowly working its way into my spinal column.

i need a new hobby.

Wednesday, October 22, 2008

i hate thinking of pithy titles

the quagmire that is masto-med continues. I hate to say it, but there is a huge part of me that is incensed by what continues to go on because it is in many ways cruel and repetitive and drawn out (and I only know a sliver of the details being somewhat of a newcomer) but another part of me is almost amused at how bizarre things are getting.

At one point the focus was all about one person being a mean big jerk (i've been chastised for my language so I'm trying to clean it up for the kids) and then suddenly everyone started being big mean jerks and now we all suck* for various reasons (seriously, this is the cliffs notes version because I am trying really hard not to play politics because I don't know the whole story, I don't read a lot of listmail because a portion of it does not pertain to me. People I like are getting into fights, and I know that I do not like that...especially in scenarios where I like all parties involved (which again is why I am giving the goofy, inaccurate cliffs notes version of the whole debacle.)

what I want to know is, seriously, where the %$#% is our moderator? did he just jump off a cliff? is he going all nero and playing the violin while masto rome burns?

Anyway, list drama is getting tired.

And oh,hey, speaking of tired, that is pretty much my constant state lately! I am unsure if it is depression (i am dubious on that since I have experienced depression, and my depressions are extremely dark) and have had all sorts of medicinal advice thrown at me. Doxepin, Adderral, Ritalin, supplements...it's a nightmare to navigate it all. I know my attention span is shut and I like sleeping a lot.

I also dislike my psychiatrist, which is good since he isn't returning my calls anyway...so I have an appointment next week to see a new psychiatrist to discuss my mental health medical options. Doxepin supposedly has worked wonders for some masto patients as it has antihistamine elements to it. So I think I might try that along with Asprin therapy and see where I end up. If that doesn't work, then I will look at stimulants, but that's sort of like throwing paint over a crack in the wall...the crack is still there, and might get worse, it's just hidden. I'd like to get to the root cause of things if possible. Somehow I am guessing that that is a sentiment shared by oh, 100% of the masto community, or any chronic illness community.

in other news, Mastocytosis got thrown out as a differential diagnosis on House this evening. Of course it was the worst-case-scenario-the-patient-will-die-in-days differential, but it's neat (i guess) that it still made it out there. I'm honestly surprised that it hasn't gotten it's own episode as I know my diagnostic process was intense, i got tested for MS, lupus, hiv, aids, hepatitis (which was discriminatory really, since the only "symptom" i had for hepatitis was the fact I am tattooed), tertiary syphilis (what?!?), severe anxiety disorders, and i forget what else. tons of things...it was ridiculous.

So yeah. I need more energy as this fatigue is killing me. I'm finally starting to shake the side effects of the Cipro (thank goodness) so I've been walking again...but I want to run.

*me for language. however i was complimented on my writing style when i'm not being all sweartastic. so that was nice.

Monday, October 20, 2008


Tonight/This morning seems to be pissed off insomniac masto sufferers attacking each other on the list. It's like Lord of the Flies only we're probably all too sick to kill boars or lob boulders at each other, which honestly, is a good thing. I should spend time going to look for the conch instead of posting here I think.

Not too much to report here. Still feeling the side effects from the Cipro. I am apparently (according to my PCP) no longer allowed to take anything from the quinolone family. Every since I took it I've felt like my legs were going to pop. First it was my calves, then it moved to my knees, and now it is sort of alternating between knees and ankles, which is all sorts of not awesome since that is where the tendons go.

So yeah. I've been laying ridiculously, boringly low and it is incredibly frustrating. Tonight I finally resumed walking at a veeeeeery slow pace (I have a treadmill) with no ill effects, so we will see how that goes. It feels like a damned if you do/if you don't situation, since walking is good for the heart and bones, and could result in a messed up tendon. But it's possible doing nothing could result in tendon damage too.

In other news, 2 things

1) going to see a urologist on Thursday to figure out why I was urinating blood. The cipro seems to have wiped it out, though my husband has something similar to a uti which he possibly passed to me. Ethan had Epididymitis which is treated with an entirely different class of antibiotic, being Doxycycline (which he wrote me a script for too, even though I never saw him). Since I am only now getting out of Cipro hell, I am not too psyched to take another antibiotic, especially one recommend by a doctor sight unseen. My symptoms seem to have abated for the most part (lots and lots of water and unsweetened cranberry juice) so I'm in no rush to take more antibiotics. When I lived overseas people were honestly shocked at how often Americans took antibiotics, and I can't blame them. I feel like I am recovering more from the Cipro than the "whatever caused me to urinate blood" thing.

2) I am seriously considering Doxepin. I've been on the fence about it for a while because two common side effects are massive weight gain and tremors. I don't want to be overweight (again) and trembling (or going psychotic, but that's a rare side effect). Not that I'm thrilled with my appearance, as I'd like to lose like 5lbs or so, but obviously superficial reasons are not enough to avoid taking a drug. It's just that my energy levels have been terrible lately and getting lower and lower. I also want off the Klonopin (which was prescribed for me back when some dumbass ER doctor decided I was having panic attacks instead of anaphylaxis...and it's a drug one needs to taper off of slowly. The Doxepin would help with that tremendously, though truth be told I've been trying to wean myself off without the Doxepin to mixed results. I've had flushing episodes again, which stopped with the Klonopin.

So yeah, not too sure what to do.

So that's the state of the Bridget.

Monday, October 13, 2008


Sometimes it feels like one thing piled on top of another.

So last week I had noticeable blood in my urine. I immediately went to my PCP to have some tests run...obviously there was blood in my urine, and we're still waiting for the stupid cultures to get back, but all signs pointed to a UTI, so it seemed prudent to get me on antibiotics ASAP to clear it up before it got to my kidneys.

I went on Cipro for 3 days (500mg 2x a day) and the blood cleared up over the weekend. Since today was a holiday I was unable to go to my Dr.s's office to do another urine sample to see if in fact everything is ok, no blood in the urine, etc.

In the interim I have developed these massive muscle aches, especially in my calves and quads. Of course Cipro can cause all sorts of muscle and tendon problems so now I'm all sorts of terrified. I stopped the Cipro at 1am on Sunday, so I'm hoping this is just some residual nonsense that will right itself quickly. Of course, when I was trying to poke around online for some information regarding Cipro/muscle pain I was greeted by a ton of sites claiming Cipro ruined their lives, calls for class action lawsuits, calls for the product to be taken off the market...really heartening stuff to say the least.

The worst was today though, during a driving lesson, my right leg cramped up so badly I had to stop. In addition to that, the pain/anxiety about the pain set off a minor mast cell storm/degranulation/whatever and I began experiencing a lot of GI pain. Obviously those of you with masto know what the unpleasant outcome of that was. I've felt out of sorts all day since it happened. To be honest, this was my first driving lesson after the accident so I was starting off nervous to begin with...the leg cramping and thoughts of black box labels just exacerbated everything.


Hopefully tomorrow I can get in touch with my PCP to see if this leg stuff is normal, what I can do to prevent further injury, and find out what the hell was up with the possible UTI.

In the future I don't think I'll take cipro again unless it is totally necessary. I've just read too many horror stories, have felt terrible since taking it, and am concerned about the long term side effects. In general I am very leery of all medication, but this seems somewhat valid.

In other news, this week my partner is traveling to Minnesota for the annual TMS conference. I will not be joining them since a) I don't like flying b) I don't feel well c) I don't want to go to Minnesota. Hopefully they will come back with some excellent information.