Wednesday, November 16, 2011

The Dilemma

I spent yesterday morning scrubbing tape residue off my body with rubbing alcohol, being tender around the spots where the tape had ripped my skin when it came off.

The area where the central line went in is itching ferociously which is good; it's healing. This is (was) my central line. Her name is Terri. She needed a name because it was like having an alien in my chest. An alien who made me cough whenever I breathed too deeply and who poked me in the lung on the way in.
My hair has to wait to get washed because my shoulders hurt too badly and I'm just too damn tired to go through the ordeal of wash and condition and de-tangle and deep condition and rinse and de-tangle and leave-in condition then twist and pin.

Everything hurts. I lost much of my muscle with that ten pounds and now my joints are all over the place. I even made an appointment with pain management–reluctantly.The last time I went I got a prescription, but as I turned to leave, my doctor said, "remember you can't smoke any weed with this prescription." It was beyond insulting.

As far as my nausea goes, it's still here and Zofran only takes the edge off. The strange thing is that it goes almost totally away when I'm not physically active, and surges back when I am. The more active I am, the worse it is (has anyone dealt with this before? Does anyone know why this is?) This means that the doctors can't observe it while I am in the hospital, which is really, really frustrating.

It's like a part-time gastroparesis or something. When I went Christmas shopping with my mother in Columbus we walked for hours, and I was popping Zofran all the way, even though I hadn't had anything to drink besides coffee. I couldn't eat at all that day and at one point it got so bad I just went to car and lay down in the back seat. Yet the next day, I was able to eat almost normally.

So I need...what? A neurologist specializing in migraine? Or a GI doctor specializing in motility disorder? And do I go with the hospital system that has the better and more experienced doctors, but only so-so hospital care (where they play keep-away with my pain medication every single time.) Do I go with the system where the doctor aren't experts but the hospital care is great and the doctors and nurses are always willing to listen to my explanation of EDS?

I'm tempted to go with the latter. My horrific experiences in bad hospitals in Chicago and Cleveland left me with PTSD, nightmares and flashbacks brought on by something as innocuous as seeing a medical drama on TV. Just being in a hospital is in itself a highly traumatic experience and I don't want to make it worse by adding doctors and nurses who are being sly by keeping my pain medicine away from me while at the same time acting as if they've done nothing wrong.

This sucks. I haven't been this sick in awhile....


Em said...

so sorry your going through this yvette. its of no comfort, yet unknowing drs are much the same over here. go with your instinct, making decisions like this are tough. keep us updated. really hope your health improves soon.

oh and the nausea i experience this too. if im laying down i seem to be less inflicted, yet being upright seems to set the nausea off. have no idea why. something to do with the pots and blood maybe. take care. x

Yvette said...

Em, I think I will. My family wants me to see the better doctors, but I'm not sure at all.

Shoshana said...

Yvette, I see a motility specialist in Cincinnati, where I live. If you ever wanted to make a trip down here, you would have a place to stay with me. I get worse nausea when I move around, too. It is almost like motion sickness. Unfortunately, I don't have much advice for you about how to get rid of it. I do understand the PTSD stuff - I am that way when someone talks about placing an IV instead of using my vascular access port.


Yvette said...

Shoshana, it's constantly at the back of my mind, going to Cincinnati. For now I'm too emotionally and financially drained to pull it off though. Maybe later in the year, if this stuff insists on not going away, or God forbid, gets worse. Thank you so much for opening your home to me; I don't know anyone in the area and I'd definitely take you up on it.