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.


Kim said...

Good for you to get that over with!!! and no bad came out of it!!! I understand what you say. I know it's hard! It is very scary when even Doctors don't know what to do with us. When i was really ill after a flight my husband begged me to go to the hospital, but I was afraid they wouldn't know what to do with me. So, I doubled all my meds, per my family doctor....and came out of "it".

Anonymous said...

make sure you get a Chiari specialist . they are all over the US.A neurosurgeon not a neurologist. www.asap.org

Anonymous said...

we all tend to think that we are hypochondriacs in the beginning. it sounds crazy that we are actually relieved to find out that we do indeed have something really wrohg with us. but then to find out that it is so unusual and hardly anyone knows what to do to help us. been through all that too girl. it sounds like you have atleast found a doc that will listen to ya . that is half the battle. once we start naming all of our symptoms ,we get looked at like we are crazy or drug seekers. hang in there after a few more years of it you will know better how to treat your symptoms than your docs. if the docs would listen to us they would save themselves alot of time and us alot of pain and heartache.

Bridget said...

anonymous #1, hopefully i will not need a chiari specialist...i don't really think it's a concern so much as a paranoia, something i'm trying to address...but yeah, if it comes down to it i'll obviously weigh my options very heavily. thankfully living in boston gives me a lot of great resources when it comes to medical professionals

Bridget said...


usually i try to do that too, i don't like hospitals or ers, and try to manage my symptoms with my meds as much as possible...it just gets too daunting after a while

Bridget said...


oh the diagnostic process was insane and took years...i had been tested for every autoimmune disease possible, felt like my life was turning into a really bad episode of House...it was ridiculous. I am very happy with my PCP and Mast Cell specialist, so that helps a lot. I think it will just take some time to figure out what meds work the best for me in what combination...i'm still trying to get to that place.

Anonymous said...

darn, my ipad just ate my comment...suffice to say, we have trouble with sleep because histamine levels are supposedly higher at night. also, i had terrible neck pain before i went on vitamin d3 (not d2). i've read that we can be especially d-deficient, but most people are anyway. i'm new to your blog and enjoying it.

Anonymous said...

btw, after i posted that last comment, i found this for you - skip to the discussion and you'll find why we have trouble with sleep at night and are so unbelievably tired during the day: