Debra and her son, Jeremy, both have FM.  Debra also has CFIDS.  They've just joined this group and have some questions.  Please help them out if you can.

There is more info about Debra and Jeremy below.  Please note that below the numbers refer to the questions listed at the very bottom of this email.
 
"Does anyone know of resources for people that have FM and sleep apnea (or in Jeremy's case migraines)?  We're applying for Disability for Jeremy to ensure that he doesn't have a lapse in his medical coverage - does anyone have a recommendation for which choices to make, i.e. we have Kaiser now for us & we're wondering whether to stay with them or try something else?"
 
To Debra and Jeremy - I can't say I know of anything specifically for FM and sleep apnea, but a lot of people I've met at support groups have gone to the sleep clinic at Stanford. 
 
Is Jeremy applying for SSDI, SSI, or private disability?  I've met a lot of folks at support groups who have Kaiser, and they often complain about the lack of compassion they receive.  (But this often the case outside of Kaiser too.)

Welcome to the group.  I hope you find the information and support you're looking for.

Sharon

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Date: Fri, 1 Aug 2008 14:20:06 -0700
From: dgkks@...
Subject: Re: File - Subscription Request Questions
To: CEFSFB-owner@yahoogroups.com

1. & 2., 5., 6. & 7.)
My name is Debra Grace Khattab, age 46, female, white, poly/bisexual; my son's name is Jeremy Siegel, age: turns 17 in September, male, white, undecided
3.) Conditions
DGK - Fibromyalgia for ~11 yrs, Chronic Fatigue Syndrome & Irritable Bowel Syndrome/Candida for ~ 21 yrs., Sleep Apnea recently diagnosed & severe Gyn problems for ~10 yrs.
JS - Fibromyalgia (currently being confirmed), Migraines & nervous system problems/pain since infancy, Sleep Apnea for ~ 4 yrs., Irritable Bowel Syndrome, Sensory Integration Dysfunction & Learning Disabilities caused by short term memory loss due to chronic pain
8.) Berkeley
9.) Health up and down for both of us, we're applying for disability for both of us as unpredictable illnesses & bouts of pain leave DGK unable to work & JS struggling and behind in his homeschooling.  My husband does most of the cooking & cleaning but he doesn't drive so DGK drives to medical appts. & homeschools both JS and his brother.
10.) Does anyone know of resources for people that have FM and sleep apnea (or in Jeremy's case migraines)?  We're applying for Disability for Jeremy to ensure that he doesn't have a lapse in his medical coverage - does anyone have a recommendation for which choices to make, i.e. we have Kaiser now for us & we're wondering whether to stay with them or try something else?
11.) Both Debra & Jeremy write, Debra is a published poet & working on writing science fiction, fantasy, horror & children's fiction as well as the occasional folksong and she has developed websites and calendars/email newsletters for poets, homeschoolers & more; Jeremy has written & performed poetry (he helped cohost our poetry reading in Berkeley for four years) & is working on some fiction.  Our family is into Science Fiction, Fantasy, Horror, Comic books/Graphic Novels, Anime, Manga, etc. helping run a small monthly club called MGI and going to local conventions throughout the year, Jeremy is also into boffers or foam weapon LARPs (live action role playing) as well as cosplay costumes.  We also run a board game night in Oakland and have a large zoo of animals as part of our homeschooling.

CEFSFB Moderator <CEFSFB-owner@yahoogroups.com> wrote:

Thanks for your interest in the group. I'd like to introduce you to the list and make sure that you're not a spammer. Please answer the following questions. The ones w/ stars are mandatory. All of your answers, except the first one, will be forwarded to the group. Feel free to use a pseudonym to protect your anonymity.

*How did you come to learn about this group?

*1) Name
*2) Age
*3) What medical conditions do you have, or think you may have?
*4)Are you the friend or family of someone w/ one of these illnesses?
*5) Male/female
6) Ethnicity
7) Sexual orientation/Gender Identity (I ask this question bc/ many gay, lesbian, and transgendered people w/ these illnesses have expressed that they feel more comfortable in groups like this, if they know that there are others like them in it. I am a lesbian.)
*8) Town or City you live in
9) Level of functionality - i.e. homebound - unable to cook or clean for self, able to get out a few days in a week, work part-time, work full-time
*10) Questions you have for the group i.e. "does anyone have a good rheumatologists who knows how to treat FM," "does anyone have a good Kaiser doctor," "would anyone like a walking buddy," "would anyone like a phone buddy"
11) Interests you have that have nothing to do w/ your illness(es)
12) Anything else you want to say about yourself.

We appreciate the interest of healthcare providers, but they are not allowed to join this list unless they have one of these illnesses and are joining for personal reasons. But we are glad to forward your info to the group. If you would like to make your services known to the people on the list, email your info to CEFSFB-owner@yahoogroups.com, and it will be forwarded to the group. You may do this once a year.

Sharon
Group list owner

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