update-questions-long

[Guest guest]

Hey guys,

This has been a hard week on me. I just wanted to ask some stuff and let yall

know how I'm doing. I'm having a hard time typing but have alot to say so

think I will try. On Monday I had an EGD with esophogeal dilatation. They gave

me

propafol and fentanyl. (I cant take benzos like valium, ativan, and also

versed cuz they provoke my seizures). I haven't really had probs with the

propafol

and fentanyl combo till my muscle biopsy but then it only caused my SAT rates

to drop into the 80's and my heart rate go up really quickly. That only

happened the first 10 mins of coming out of the anesthesia then I was fine. This

was in December. Then I used the same combo for the urology tests they did in

February- I was fine cept again my SAT rates dropped but not as much. This time

though- less than a min coming out of the anesthesia I had 2 grand mal

seizures first one lasted about 5 mins the other one less. I had an aura before

them

right when i was waking up so was able to warn them. They didnt know how to

treat me so just doubled up on my seizure meds that day. They kept me a few

hours longer than they first planned but didnt admit me. I got extra fluids too.

I

feel like I've been postictal ever since- I've had a migraine off and on

since then, some mild stroke like symptoms, have been very ataxic these past few

days along with worsened exercize intolerance. My gi and breathing probs seem

to be worse too. Not sure if I contribute that to the rest or the dialation of

my esophogus causing the reflux to come up more. The dr also said that Im

having severe esophogeal spasms that he could see on the EGD, errosion at the

bottom of my esophogus and of course undigested food showing my gastroparesis

has

gotten worse. I see him monday to find out what he wants to do now. He did

mention that since I'm keeping my weight up that a feeding tube probably isnt

necessary- I dont know how I'm keeping my weight up though- I cant eat much and

I

think it might be from bloating from the bowel dysmotility and also I have

edema right now. I actually had gained 10 lbs recently, then I lose it again,

goes back and forth. My abdominal pain has grown to its worse also- I just feel

really awful. Then on Friday I learned that social security denied both my SSI

and SSD claims. I had already fallen into a depression cuz of the events

earlier this week and how I was feeling. Plus they are still worried my mom

might

have cancer and it seems that its gonna be hard to figure out if she does or

not- thats another story. Then other than you guys and my mom- I have 3 close

friends- my ex fiance, my best friend (both live in town) and a guy friend that

lives an hour away. My ex fiance isnt much help anymore- hes got his own GF

now and works 2 jobs, he never calls me, I was doing the calling, so i stopped

finally. Now my best friend has stopped talking to me because of lies that

were told to her about some stuff I said. She is now saying that karma is

getting

me- I dont know if I should talk with her anymore. Shes been under alot of

stress but so have i. Then the only other person I really talk with is my friend

who lives an hour away- I talk with him once a week and see him maybe once a

month. Hes become busier with his own life though at least he seems to still

care. The other people that are in my life are aquantances- friends of my best

friend, seems they dont care enough to call though. I feel so alone. Other

than you guys, its seems I only have my mom and friend that is out of town. Im

starting to feel like a burden to my mom also- shes been talking about how she

wishes so much that I dont have mito and is hoping the muscle biopsy is

negative. Even if it is, doesnt mean i dont have mito. and then that would mean

we

still dont know the cause of everything. I think my mom wants to go into

denial- she seems so overstressed. And she is really stressed (as am I) about

disability- I lose my PPO insurance in 3 months- we dont know what I will do w/o

that if I dont get disability. There are some alternatives, but just as long and

stressful of a process. I feel just way too overwhelmed with all this. Then my

local neuro giving up on me, I no longer really have a neuro- just my

geneticists in DC that I'm finding impossible to contact- like my mom said, i

feel i

have no one to go to for medical help really. Most the drs I see know nothing

or little bout mito and just treat me for symptoms. I wish I could find

someone that would help me more. I dont know what id do w/o you guys. I wish I

could

be more active here because when i was in the past, i felt so good that i was

helping others, now i feel so useless. I know im not, but its hard to think

that way- everything going wrong and all. Im hoping to get my biopsy and other

results from shoffner in the next few wks- I think if that doesnt point to

something, that will just knock me down as far as I can go. I had my next few

months planned out- getting disability, moving out of my parents house, going

back to school, working PT and now it just seems so out of reach. I know I do

have it alot better than some, but i guess ive just held this in so long, its

making it that much worse. thank you alll for letting me vent.....The 2

questions

i had were just about what anesthesia I should look into and any other

suggestions on help with disability? ty again. I'm praying for each of you

daily.

take care,

Adrienne