Flare Ups--i'm Venting

[smiles]

I suppose most of you feel like this at one time or another. I'm going thru a phase where I really am tired of having this disease control my life. I start feeling half normal and start doing things and then I go to the bathroom or something basic like that and my body freaks out and starts shaking and having muscle contractions (I have michturition syncope). I hate it when I am out--like at church and it happens. I refuse to stay home just because my body can't control its self. I have a supportive family, a reclining w/c, and meds to take when it happens, and cell phone to call my familly from the bathroom, but it all seems so rediculous to me. Why should this happen to anyone! This happened Wed. pm at church. It takes me a day to recover from one of these. Then I'm ok for a few days. No BM problems, wallking again, talking normal, eating ok,....then whamo,...out of the blue, this stupid disease takes over my body and I'm down in bed again. Makes me just want to scream!! I will not stop my life just because my body is acting weird. I was extremely off balance that day. After stumbling around for a while I got in my w/c and even my depth perception was off. I ran into the walls twice that day in my w/c. Made a real mess. Still went to church. May be I should have stayed home cuz sometimes when one thing is off (like my balance) then other body systems tend to be off too. I don't want to be run by my body though. If I stayed home everytime something wasn't quit right I'd never go anywhere. I WANT MY LIFE BACK!!!!!!

Frustrated Smiles

[janiedelite]

Hey Smiles,

Bravo for you, pushing the limits of your body in order to do something you really enjoy. I don't have micturation syncope, but it's easy to imagine how awful it must be to feel so out-of-control unexpectedly. I hope this starts settling down for you a bit!

[sue1234]

Smiles, have you ever been checked for a pheochromocytoma of the bladder? I knew if you had one around the colon it could make you faint during a bm, so I just googled "pheochromocytoma+bladder" and saw a few articles about this happening during "micturition". One article talks about one person in particular that passes out when/after urinating. His VMA levels were high, where usually a pheo norepinephrine levels are higher. Check into it.

[smiles]

Thanks Thankful, I needed some encouragement.

Sue 1234, I will look that up now. I had tests several years ago and all they found was a sluggish colon (which means my large intestine doesn't get the message to contract so I have to take something to make my bowels move). And I also had my uritters and urethra enlarged to allow for freer flow of urine. Thanks

[Noreen]

You're one impressive lady.

I really find your fighting spirit inspirational.

Hope things improve soon.

Sending positive energy and prayers your way for a joyous weekend.

Noreen

[smiles]

Reen, you brought tears to my eyes. Thank you for your encouragement. That happens alot to me. I get frustrated or have to vent and I share my pain. Somehow it ends up encouraging someone else. I have asked God to help me continue to make a difference in others lives, which is what I did before I got sick. Somehow He continues to do that despite my current life's situation. Thanks again.

Smiles

Oh, I looked up that pheochrom..... and I don't have those symptoms. Thanks anyway.