Thursday, January 31, 2008

I hate catheters and Sjogren's sucks

Lots of selfish worrying right now. Tuesday I have to get a CMG (urine volumetry), which involves drinking 20 ounces an hour before peeing into a special device and then having your bladder pumped full of liquid until it (in my case) leaks. The alternative is to get a myelogram (dye into spine) to see if my herniation is pressing on the spine more. The gyn said she can tell from this test whether the problem is neurological or not. If it is neurological, fun and games involving spinal fluid and dye and needles (nightmarish to me). If not, she recommends having my bladder tacked up during the recommended ablation or hysterectomy. It's apparently not stress incontinence and happens when I'm just sitting or conversing, fortunately not in large quantity. It's been happening the past six weeks or more. Thank goodness I saw her before the spine doctor since her tests are less expensive and less invasive.

I'm not sure I can make it with 20 ounces of fluid in me for an hour (seriously, drinking too much water is bad if I'm away from home, and I go to the restroom often already), and how I'll make the drive home without stopping every two minutes. And catheters=torture. I don't like being messed with, don't like medical instruments or tools or whatever poked in me, I feel nervous and upset already. She, by the way, the gynecologist, is way better than the urologist who recommended this umm, a year and a half ago on a second office visit, along with cystoscopy (though for infections, not leakage). When I arrived, the nurse told me that's why I was having done; uhh, no, not without advance notice. That's not right and they could have told me at the last visit. Plus it was really bad timing. The current gyn. says the urologist should have it done if she thinks it's a piece of cake, that from her own experience it's not, and that I shouldn't plan to do anything else that evening. The only time I've been able to deal with a catheter was after my son was born, when I was physically unable to urinate and felt like I'd explode. Then the catheter was a relief--no one was pumping liquids into me.

I've started having hemorrhagic periods again, thus the recommended endometrial ablation or hysterectomy, though hysterectomy worries me since that will increase bone loss. I have a script for the pill (3 months, no period) if the next one's as bad, so that I can get through the next few months. One thing I've found is that NSAIDS increase the frequency (as in every two weeks) and amount of my periods--nonsensical, but true. Maybe getting off them will work some wonder cure, but I caved yesterday and took two after three weeks without because I was working too slow and could not function.

I can't deal with this and all the orthopedic/rheumatologic issues at the same time--I have to work triage with myself.

And...I could stand in front of the mirror all day putting eye drops in my eyes. The eye doctor says I'm not producing tears, gave me a list of dramatic measures to take to avoid damage. It also gets difficult and awkward to present info when your lips stick to your teeth from lack of saliva. I feel dessicated. I hope much of this is from dry winter air and not Sjogren's, as the rheumatologist and eye doctor suggested (which goes along with the other medical problems I have). I really didn't want to deal with that, too. We keep the humidifier running, and I'm boiling pots of water.

The PT yesterday was very understanding how little I've been keeping up with exercises the past week and a half due to other medical issues and still working on minivan (today!), lift, scooter, insurance, doctor, accessibility issues, etc. That surprised me--I'm used to being lectured by medical professionals.


Wheelchair Dancer said...

aiii, I can't believe I'm committing this to the internet.

On bladder issues: So, I'm a dinner in NYC in a new restaurant with a crip friend. It's her hood. Suddenly, I'm caught with the urge to pee. For a second or two, I wonder if I should sit on it... But no. There's no mercy here. I've gotta go. And now it's bloody urgent. I excuse myself to go to the bathroom.

I get there. The restroom is inaccessible. Completely inaccessible. And I just freak in the middle of the restaurant. My friend who is also a wheelie recommends that I go to the Starbucks a block and half down the road. I run. I mean, I really run. I leave my coat, my gloves, my purse and run.

When I'm done (fortunately, it's not out of order), I emerge to find my friend outside with my coat, purse, and gloves (it's starting to snow). We look at each other. She laughs and describes the surprised look on the hostess's face as I whip through the restaurant. She helps me gather up my dignity. We go back and get dessert.

Crip friends get bladders.


FridaWrites said...

I know, I could hardly believe I wrote about it, too. I appreciate your empathy/sharing.

Bladder problems probably affect a lot of people. Honestly, I wouldn't have even said anything at any doctor's office if I had not been asked, though I knew I should. It's embarrassing.

One of my friends used to have a lot of trouble because her paid attendant didn't show up on time, which left her in a puddle.