OK I survived and now its another 3 weeks for the results.  LOL.  I knew I would survive the test even if it makes me nervous and I'm terrified of waking with a stoma. That's always my fear when they do anything with my abdomen. I was more scared of the prep and who wouldn't be. I don't know a single person that likes being turned into an experimental new shuttle for NASA. It wasn't that bad though. They gave me something new and granted it did evacuate my entire digestive tract it seemed to be a much gentler process.

 

 I have been flaring back to back since last Friday. My youngest is also flaring. SO much so that he didn't even want his birthday cake! The fact that our abdominal flares last more than the 12 to 72 hours that a typical FMF attack lasts just compounds my thought of Behcet's.  Its time to start the symptom journals again. I know it should be at least every 4 months that I journal someone but it is just aggravating and I'm stubborn. the fact that it would just help me seems to escape my mind some days.

 

Oh... back to the biopsies. The doc says that everything she could see looks perfectly healthy. Anything she will find must be found in the biopsies because visually at lease there are no signs of Crohn's disease, ulcers, or polyps. I don't like her wishy-washy answers to questions like: how many biopsies? "several" and "more than ten" were her answers. then: You are doing the Congo Red test right? yes yes were checking everything.. which was said rather 'sick of hearing the question" rather than reassuring. So if there is no Congo test I will upset to say the very very least.

SO I saw my GI doc. I should say my new one. my last GI doc listened for about 2 min, wrote on his clip board and then walked out while I was still talking.  Anyway this one listened! Today I am just really freaking out. I can kind-of handle the embarrassing tests but the fact that she said "many biopsies" and then something about in the teens but I cant quote that word for word. you want to know the biggest fear. She finds nothing.  That is the most annoying part of having a rare genetic disease. Aside from doctors looking at you wondering what kind of bug you are. Having tests come back completely normal.  like my blood pressure. it was extremely high for 9 months and then went away for a year and now I have extremely mild high blood pressure like 120 over 80 but I will have spikes that last from 12 hours to 3 days in the range of 155/105 and then come back down to healthy normal for a few weeks before going back up to mild hypertension. and they don't know why except probably the FMF.  so now my stomach its just crazy. I don't think its FMF alone but an inflammatory complication called Behcet's Disease. researching it scares me silly. between FMF and BD i just sit and nod my head when reading research or notes from other patients.  ... ok more later this is just frustrating. 

 

 

day 4 of this Flare set... 4 days ago my left bicep froze up. That was the major complaint. Yes i had fever and all the other stuff, "D" tired...whatever. 3 days ago my left arm felt like i had been doing bicep curls the entire day before (duh I kind of was, involuntarily). and the headache set in.  It just got worse yesterday. The bicep pain was gone but that muscle just kept jumping/twitching. Joint pain all over and crankier than a beast. Couldn't type to save my life. Not that today is very much easier on the typing aspect. I keep missing keys or typing with the opposite finger. Example s for l,  k for d, u for r, n for c. And also for today my left hip is to swollen inside the socket it's trying to give out all together. Don't forget the headache.

 

I will have to complain more later. typing this much is making my limbs burn from finger tip to shoulder.

 

 

 

SO ts now later..  my hip is letting me walk but my head wont let me think long enough to DO anything! I am headed to bed early in hopes the morning will bring the end of this flare!!!