POTS, EDS and miserable while standing in line, and all that stuff ...

[Guest guest]

Hi all,

So, what is the best thing to tell folks as to why I < > walk, but not

far. Not to mention being told I < > walk but should NOT walk. I also

cannot sit in one position too long. Standing drops my BP after a time. My

hypertension/kidney doctor said I had POTs. But, then in my case, the BP spikes

right

back up due to my one floating kidney [nephroptosis], kinked one ureter and

other newly found GI problems. So, I go out and hope my speech [transient

aphasia] and memory stays with me. Usually, standing for long in their offices,

waiting to be served ... I am at my worse. Finally, when it IS my term I get

" brainfog, " -- from the drop or spike. I have a letter documenting this to show

to

people :-(. <<< Is this when I go into my Autonomic Dysfunction and EDS

speech or give out a flyer about me>>> :<. Okay, so I am a wee bit depressed

tonight.

My latest misery is trying to explain why I don't frequently visit Bill in

the hospital. They must think I am the worlds meanest wife. If I still drove it

would not be such grief. I feel that my medical conditions are such a

" mouthful " and usually even the medical staff are not helpful or nothing about

EDS.

They are like, what does being flexible have to do with my BP. [they said I have

stretchy, blood vessels]. If Medical folk do listen they like to tell me to

check myself into the ER.

Well, it is 6:09 PM. I just burst out in a drenching sweat and knew to check

my BP. I had been standing typing this email and ready to leave the house. My

BP is 180/160/99. With this I am supposed to be comfortable walking to the

hospital ... or taking the taxi, same difference. Well, this is me. It is 6:11

PM

and the BP has dropped to 108/96/81. I hate me sometimes.

Well, so I do not worry everyone. My BP is what it is for me and I have been

living with it my whole life.

GOOD NEWS: I am in countdown, my BIG SPECIALIST APPOINTMENT FOR " whatever it

is I have :-D " is on April 2nd 2004. Five days to go before I freak out a new

doctor :-). Arrrrr. I feel better just typing that. Well, one more BP check

and I am off to the hospital to see the hubby. I am back to normal ... I guess.

Whoops, the BP at 6:14 PM is 217/200/168. Oh Boy.

I am in tears. Just for a moment. Tears of frustration, NOT pain. My body

doesn't understand pain. Something must be hurting me to spike the BP that high.

Maybe I got Foot pain or a too tight belt on. Maybe my ureter is kinked, again

due to my standing. And, with this BP I am going to the hospital to visit?

Gosh Gee. My EDS GP agreed that taking BP meds makes my BP worse. He mentioned I

respond with atypical reaction. I did take all my BP meds, as normal for an

excursion. Well, it is now 6:16 PM and I am back to 112/88/79. And, this is

what I live with, everyday, 24/7. Sorry for the mini-vent.

Hmmmmm, that 217/200/168 scares me. My highest HR is 280. I do NOT need to be

walking anywhere, or going out alone anywhere! The above was my test of

standing at my PC for a while. To me ... well this is why I do not go out.

Finally,

my GP has seen me at 280/150 in his office and got use to that. The ER has

seen me at 249/130 and were told to ignore that. Not what my plan is. I want to

be " fixed " ... just a little, not ogled as the amazing BP freak. Caro.