Re: Sleep-NOT!!!!!

[Guest guest]

Group,

Well, I don't sleep very well these days either. I wake up several times

during the night & have to go to the pottie, (not diarrhea). It's a vicious

cycle. If I don't eat the spells at nite are much less, but how long can a

person not eat.

I have had some really interesting new symptoms lately. On Saturday nite

the 11th of September, I started having this jiggling sensation in my head.

It was just like my brain was jiggling around. I was afraid to go to bed.

Scared that I might seize or something in the night. It was pretty weird &

scarey too. I have had this sensation constantly for over 2 weeks now. I'm

sure it won't be long now. I guess I should get my affairs in order here.

That is how I plan to spend this weekend. Writing letters of to all my dear

friends & family, to be sent later when things aren't so good anymore. I am

also making a video tape to give to each of my children. Hopefully to

provide comfort to them when I am no longer here. If these items aren't read

or viewed for many years-that would be great-but not likely. I keep looking

for an answer to my situation-but it isn't very encouraging. Orphan

conditions & their outcomes are not well documented. So, I don't even know

what to expect next or how much time there is left. Hopefully years.

I do get so very much from this list & am grateful for the support & comfort

that it has given me this past year. Thanks to you all !!!

Multi-system involvement of this eosinophilic condition gives no promises.

I'm just fearful to go to sleep & not wake up, as the spells tend to be worse

at night. I'm also worried about something bad happening at work. I'm not

sure I want a huge scene like that to happen & also not sure if my co-workers

would have a clue what to do for me. I did type up a note card-on hot pink

paper & put it by my phone at my desk. It contains pertinent info on my

condition, including do's & don'ts. It may make the difference for me with

regards to how medical professionals treat me in a really bad spell situation.

I wish you all well & much betters days ahead!!!!

Take Care U,

in Iowa

(Camp878904)