Day 97 - April 7

May I present a few things that I may or may not have enjoyed after my doctor's appt today.

After my surgical procedure a month ago, the urologist said I had "classic IC."  He was basing that on the way my bladder reacted to the test.  (They fill it with something to high volumes & see if it causes blisters & hemorrhaging (sp?) - simplistic terms.)  He also did a biopsy, but that was to rule out worse diseases.  Then he said "here's the meds, take them for life." 

Fast forward to today - my appt at Hopkins with the director of Women's Pelvic Health.  (Fancy title, totally not fancy guy.  He was awesome and very down to earth and spent a lot of time with us.)  He said that he could make those reactions happen to anyone while they were under (it does cause considerable pain if you do the test awake.)  He also said people like teachers & truck drivers drink less in general due to their jobs and train their bladders to be smaller and to hold smaller volumes.  So that explained that part of the test result.  He also said that he truly doesn't believe someone has IC if they don't have the go-all-the-time problem.  (Which I don't.)  He said if you're not getting up several times a night then the medicines won't help. 

So - he believes it's basically just my fibro manifesting in a different way and that being off my meds for this long made it pop up.  He also believes in the mental connection - doctor said there was something wrong with my bladder and that I should drink lots of water.  Which I did.  Which then makes me have to go more. :)  Plus, once someone tells you there is something wrong with a part of your body, you think about that part of the body more. 

He said that the 2 meds the other guy wanted to put me on do nothing to help with pain, they just help with frequency issues, which, (all together now) I don't have.  Also he told us that normal people heal (get all the way to 0 pain) from bladder surgery in 3-4 weeks and that with my fibro it'll probably take me longer just like every other injury I get.  AND...diet and meds are no big deal, I can take whatever I want and eat whatever I want as long as it doesn't get worse like it did with the margarita that one time.  He suggested avoiding alcohol & caffeine but other than that eat normal and healthy.

So what did I do?  Drank a gatorade and ate a bunch (a BUNCH) of tagalongs.  Didn't get to the sour patch kids because it was dinner time. :)  Not healthy, but normal. :)

Day 84 - March 25

Another lovely picture of art in a doctor's office!  Met with the surgeon who did my thing at the beginning of March.  He advised me to go on meds & not have kids until he knows if the meds are helping me or not.  These two particular meds take 6+ months to build up the proteins or something.  He really made me angry, because he was only thinking about one body system.  He doesn't care how it will affect my problems that my other doctors treat.  Why can't I just get all my doctors who treat various parts of my body (and perhaps a shrink to take care of me while they all yell) to sit around a table and help me make the best decisions?  It seems like every medicine that one of them wants me to take is something another one is telling me NOT to take.  (Heck, even one of the meds the urologist prescribes is on the "don't ingest this ingredient" list that he himself gave me!)  I left there very angry today, because I felt like he didn't listen to a word I said, and didn't answer any of the questions I waited 3 weeks to ask.  And because I got flustered, I didn't really realize that until he was gone. 

So for now, this is the last time I will be seeing this particular doctor.  I have an appointment with a different urologist at Hopkins in a couple weeks, and they claim that they work as a team of specialists to figure out the best solution.  Let's hope they are world famous for a reason. :) Oh, and I think I'm bringing a written paper with my questions and concerns and perhaps even my husband, so that I don't leave feeling so mad!

The good news is, I *am* having a little reduction in symptoms this week.  AND it is not snow weather.  AND we're buying a house in 4 days.  AND it's almost a really long weekend.  All of these are good things!

Day 63 - March 4

When I was waking up after my thing today, Mike tells me that I was asking lots of medical questions like my BP, o2 stats, etc., and getting mad when he didn't know. As you see, I had this nifty box over my head, so it should have been easy! Too bad I don't remember any of it. :) I should have told him to take a picture when I was actually hooked up so that the box didn't make me look dead. :)

Day 57 - February 26

Another day, another dr's visit. Today I had to re-do bloodwork because the stuff I had done a month ago "expired" as far as surgery goes. Both the doctor and the lab tech at patient first thought that was silly, too.

Meanwhile, I've been researching doctors for a second opinion, due to the prevailing symptoms having nothing to do with my suspected diagnosis and my lack of symptoms that this diagnosis usually brings.

It's been a rough work time because I'm in charge of some timely things but missing work for both medical and house reasons. This snow day without snow was well timed so that I can get stuff done.

Day 53 - February 22

 

Best. Cookie. Ever.

6 weeks ago, my little friends at school came a'knockin.  I, as always, bought a box from each girl who asked.

Fast forward to this week.  Every day, a kid brought me cookies.

Cookies that I can no longer eat!!!!!!!!

Needless to say, my husband has been a very happy man this week. :) 

Day 51 - February 20

 

We had lunch in DC today at Gordon Biersch Brewery.  I was excited to find a (not boring!) menu item that I could order without substitution.  I had a garlic white chicken pizza.  When they say garlic - they mean garlic!  There were no less than 10 whole cloves of garlic hanging out on top of the personal sized pizza.  It was tasty.  I've done a lot of menu reading and haven't found many meals that I can eat, so we've been avoiding restaurants since my diagnosis.  So kudos to you, Gordon Biersch! :)

Day 30 - january 30th

Another day, another decoration in a dr's office.  Where do you think dr's offices buy this random artwork?  Walmart?  Target?  DoctorOfficeDecorations.com?  It also amuses me that someone did the research that shows this blue green color is supposed to be calming on the patient.  I don't know if the surrounding color takes away from the poking and prodding!

After all these appointments over the last 45 days, they think they've diagnosed me with something called interstitial cystitis.  I'll let you know when I figure out the exact pronounciation.  We're just calling it IC around the house.  (And a slew of other bad words, but this is not an R rated blog.) :)  I have to have a procedure done under general anesthesia on Thursday morning, so this dr's appointment was just a regular physical to make sure I'm safe to go under.  It took about 5 minutes for him to look in my ears, nose, eyes, and throat and to listen to my lungs, heart, and abdomen.  Combined with my totally average bloodwork, I was deemed good to go. 

Happy thoughts are appreciated.  The idea of general anesthesia is good - because if a dr wants to put you to sleep to help you avoid pain, I think you should appreciate it.  But it's still scary!