A Forwarded Message from Dawn in California

[Guest guest]

Hello my friends and to the many new people whom I haven't met. I wanted to

Thank Connie, Suzanne, (in Ohio) and Robin (peanuts) for your lovely

cards, and Robins continuous support, calls, gifts ect... over the last few

weeks, and Haydee's calls checking on me and those who have written me. I

have been one sick " puppy " these last weeks. I have spent a lot! Of time on

my Oxygen tank, had lost my voice almost completely, and lost most of my

swallowing abilities, but continue to eat and maintain my weight despite it.

I cannot yawn, and have Pharyngeal and glosspharyngal dysfunction (Throat,

voice and esophagus.) I had an Endopscopy done last week to see if I had

blockage of the esophagus, I was actually praying this was the cause for my

lack of air, but it was found to be a motor(neurological) dysfunction like

the swallowing. I had SEVERE speech problems, extremely slurred, then

hoarseness, I went thourhg this last summer and was scheduled for another

surgery, then it went away, this time it came back and didn't go away. I

fortunately haven't aspirated, the only thing they saw on my chest x ray was

my scoliosis, and an answer finally to my hip popping out whit horrible pain

(it showed my left hip is several! inches shorted now than my right) from the

SC, as well as my chestwall and ribcage, but overall the SC degree only

appears about 25 degrees, keeping in mind I developed it AFTER my first

surgery at 37, 2 years ago. I will always have permeant damage to entire

left side from SM. and will always be disabled, which I can live with, but

now my hands (both) which already have tremors are going numb, I am a

professional pianist so this is not! A good thing. I have sever nastygmus

and partial blindness ever day. Last weekend I had a whopper! Seizure for 2

hours and was unable to speak, face contorted and tongue went flying, my

family was here and we just waited it out, that's the worst one I've ever had

'I have Petit Mal seizures, which YES I developed from the ACM. I have yet

another new Neurologist whom I like, and my next surgery is scheduled for May

24th in Colorado at Swedish, then I will most likely be transferred to Craig

Rehab hospital their, with all the Quads and Paraplegics, I was one of them

last time and wheelchair bound, but am praying this time, I will leave In my

chair (I own my own) but will walk quicker than last (Took me 2 years to

learn to walk again the right way, well obviously crooked from the SC but at

least 90% walking and only 10% chair. I was hoping I could donate my chair

to the hospital someday, since they helped me their so much, maybe next year.

I haven't read to much on here, felt upset, jealous, when reading about

people riding bikes, doing things, swimming etc, I can never ever do those

things again, no matter how hard I try or how much rehab I do, I really

never thought I would be so disabled at 39, my kids are freaked out about

this surgery coming, now we are here with no support at all, my husband

travels (to keep his job)! We go to the beach every week and I love that. I

just wish I knew someone here who was disabled to, so we could do things

together at our own pace. I cant even walk my 4 year old down the block

anymore, I spend most my time at home or at the doctors. Next week I will

have more MRI's, Entire brain again, and entire spine, just to make sure my

SM hasn't ruptured, I don't know if they will shunt me this time or not, but

if it saves my life then so be it because I've had it! with these illnesses,

I'm so disgusted by the fact that 3 years ago I was just sitting there

performing on the " Steinway Piano " smiling, then lost control of my hands,

lost my vision, then lost it all in the blink of an eye, right in front of an

Audience " nonetheless " and all because of a skull crushing me, I got

Syringomeylia, I got Scoliosis, I got RSD, I got Epilepsy, I'm pretty peeved,

but am a survivor so will do what is necessary to live, because I do still

like life, and my kids and husband need me. Ive just started working last

week on " producing a film " as well as doing the score for it " it will be a

documentary " to submit to the LA film Institute, hoping some of the contacts

I made here years ago, will throw in a few bucks for the production, will let

you know after my recovery more about it " , I wasn't going to start it till

after surgery, but I'm the kind of person who needs a goal in front of me,

outside of the sickness " and this way I will know my focus when I am healing,

my family, and my work!

Well, I'll let you all know what my new MRI's say about his beat up body next

week. Better go polish up my purple wheelchair, think it needs a Jet

propeller though, " never have been one to muddle

along!!!!!!!!ZOOMMMMMMMMMMMMMMMMMMMMM

Love, Dawn in San Diego

ACM/SM/SC/RSD/Epilepsy

------------------------------------------------------------------------