Year 2 - Day 266 - September 24

Today is the day I affectionately refer to as "Brain Tumor Day." In reality, it's Johns Hopkins Pituitary Patient Education Day. My mother & I have come for the past 3 years. A whole bunch of different doctors in the Pituitary department (surgeons, radiologists, endocrinologists, lab people, etc) all do both formal and informal talks with the patients. You don't even have to be one of their official patients to come, AND it's free. It's held at the Hopkins Conference Center in Mount Washington and comes with a yummy lunch too. My mom's doctors at Hopkins have always impressed me, but at this thing the one guy really impresses me. Even with all the random people being seen sort of out of context, he knows personal information about all of them. In addition to having every number in every chart memorized, he knows personal things about them. For example, when my mom asked a question about something, he answered her and mentioned her rowing. (Granted, she doesn't row now since she's living in the desert, but it's impressive that he could make that connection.) Another guy asked a question about his wife, and the Dr. mentioned the girl's blood pressure numbers when answering the question.

Since the program was very similar year 1 & year 2, I chose to sit in the lobby and grade college papers today for the morning sessions. This guy was our security guard. I felt very secure, because he spent 29 minutes on Facebook and then on the hour and half hour he stood up, walked to the door, and looked left & right before sitting back down. VERY secure. ;)

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!