comments for a few, advocacy, dr gropman, apology, etc

September 28, 2004

hi guys,

I just wanted to appologize kinda (though I know thats what this group is here

for) for such a long post- i just read it and boy, it was way way too long, my

last one! I was way too sleep deprived (got like 6 hrs of sleep in the last week

until last night) and dehydrated and this crash, my OCD got alot worse and i get

into this all or nothing state of mind where i have to be so detailed about

everything. my mom said that i was writing loads and loads of to do lists each

day that made little sense sometimes and questions for my drs, etc. i even

emailed a long email to this dr who another dr recommended to me- a neuro that

is supposed to be good for mito in my area. if i had any change in seeing her,

geez, who knows now lol. im just sorry i wish i could of just given yall less to

read. its just been a hectic month with a crash of the seizures and

dysautonomia/dehydration mainly. I'm so glad to be getting the PICC line put in

tomorrow and then the broviac in a few wks for fluids and probably carnitor and

some meds too. They are also putting in what is called a loop monitor which is

to see if any of my seizures are due to cardiac arrythmias, or something with

the dysautonomia. I finally got 20 hrs of sleep last night!

Anyways, i just skimmed through some of the posts and i hate to see that so many

others are dealing with similar issues with drs, family, etc. we do need more

family and medical related advocacy- its too researched based and yes, we do

need that but we need all of it and it needs to be more equalized i think. I

just feel like i finally realize how some people feel like in crashes, i used to

feel like i was doing badly before, now i wish i could only go back to that. i

wish everyone in the hospital or in crashes or those not getting the med help

they could, could get more help- i wish i had the strength to advocate more.

maybe someday soon i will since i do have some better drs and some better

treatment coming it seems. just know that you all are in my prayers and thoughts

daily. also- someone mentioned dr gropman- i see her and she is a good dr, but

im not sure if she is worth going to if you are going to travel a long way, i

see her only because shes 20 miles away from me. she only wants to see me every

6 months and she did put me on the cocktail and she did find me drs at the

hospital she works at that she knew of but she expected me to find some others

that she couldnt find, she does work with them some but her case load now is

pretty high and she does want me to have an internist now to help her it seems,

if you want to know more, id be glad to talk about it, she has helped me alot

though and id be lost w/o her. anyways, im exausted and got to do a few more

things before tomorrow- and this is getting long again but did have to make a

few comments about some posts etc. take care everyone, at least we do have each

other!

Adrienne

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