to gothbubbles

Discussion in 'Fibromyalgia Main Forum' started by Shannonsparkles, Oct 29, 2006.

  1. Shannonsparkles

    Shannonsparkles New Member

    Glad you got your profile filled out. We're only a year apart, and we look alike! Weird. lol

    Glad you are able to work, walk a bit, and conserve funds. Do you still live with your mom?

    You're a good writer. :) What sort of writing do you like to do?

    Do you know anyone else in your area who has CFS? When did you start to notice you were getting sick? It's true, NO ONE would make this DD up.

    Hope I didn't ask too many questions. Have a good week. May be a while before I can reply.

    (( )) you Canadian doppleganger, Shannon

  2. Gothbubbles

    Gothbubbles New Member

    We really look alike? Wow! That's amazing. you should post your picture in your profile so we can confuse the board members lol.

    Yeah, I work 8 hours a week, it gets me out into the world. And I have understanding bosses who don't give me crap when I call in sick. I also do once a month at a videogame magazine.

    I was living with a boyfriend, and when that went sour I moved back in with my mom and dad. They were being unbearable and I couldn't stand the threats of violence and so I left. I was homeless for about a year before getting section 8 housing subsidy, which has been a lifesaver. I live ON MY OWN, which is good and bad.

    It's great because I get a lot of privacy, and I feel big, and grownup, and human. It's bad because I haven't cleaned since I moved in last february. (It's very messy!). I have friends who come and do my dishes a couple times a week, and help me out with cooking and shopping. I live on the bus route, which did me no good for years because I got so confused and the system caused me to end up the wrong places, or not get where I needed to be. I started training myself to take the bus a few months ago, and I started with one bus route. And now I take the bus to get around just about everywhere. I get free bus passes from my Voc Rehab counselor.

    I conserve funds like a depression-area grandmother (nothing in the mattress, though)! I live on about $4000-$5000 a year, and I'm able to do that because of section 8, foodstamps, smart spending and DISCIPLINE. I'm always looking for clever new ways to save a couple bucks, and though I don't really have any savings, I can maintain what I've got.

    Thank you for saying I'm a good writer! I wrote published articles in newspapers and magazines since I was 16 years old (And well at that time). I work part-part-part time at a videogame magazine called Computer Games Magazine, and also it's spin-off quarterly magazine called Massive Magazine (which is all about mmorpgs). I'm their editor, and sometimes-writer. I just finished a feature for Massive about free mmos. It'd be neat if I could get more writing work, but honestly? I don't think I could handle it. I usually write an article a month or less. Not a big deal thing.

    Yes! I know a couple people here who have cfs, including the president of the vermont cfids association. I don't remember how I met him, though lol. Stupid memory. He wrote a good book about his experience with CFS called "we're not in kansas anymore". His website is www.monkeyswithwings.com
    He's done some good lobbying and we recently got a bill signed into law that requires doctors to read a special CFS medical pamphlet so they won't keep treating patients like nutjobs. I can't remember who the other person is right now, but I'm sure I know someone else with cfs.

    I got sick acutely, so it wasn't hard to notice. I was watching something about mary, and I was feeling pretty dizzy and loopy. I had to go to the bathroom, and at the time I was not able to walk due to another (Stupid) condition. So my friends used to carry me to the bathroom (Which was upstairs). I passed out and they almost dropped me as they were carrying me up the stairs. I woke up in a bed and was like "i have to pee!" lol. I have never ever returned to normal since that moment. That was 6 1/2 years ago, and I was 18.

    If you're wondering about my legs, here's what happened. I used to be a runner (I sound like an old lady!) a long time ago, and I started having pain in my knees. I saw a doctor about it and she diagnosed it "Chondromalacia Patella" (a common disorder that causes knee pain). So I treated it as such, did physical therapy, it wasn't a serious disorder. I continued running every day.

    I went to college and on campus everything is a hill or a stair! It was starting to cause my knees to be really painful and difficult. I went to health services and they told me to continue my exersizes, and keep walking. So I did. After another week of this my knees were so painful I couldn't bend them. I went to health services again, and noticed how hard it was to bend my knees. They're morons, so they told me "Your knees are stiff because you aren't walking on them enough" I was like "You retards! I got this way from walking on them like you said I should"

    Well, long story short, I'm really flexible, and it turns out that flexible people sometimes have fragile tendons and a greater range of motion in their joints. you can imagine what this turns into with hills and stairs. It was so bad I was stuck in a wheelchair for about 4 months or so, and I walked with a cane for more than a year.

    I hope I didn't bore you! Please tell me your story, and what you're doing now. I'm really curious. Young people like us getting sick is so weird, since we end up with an odd perception of life, and never really get to become adults. And in other ways, we skip the whole adult phase and become elderly, haha.
  3. mrdad

    mrdad New Member

    I'm MRDAD (JOE) and I have a Post set up to "speak" with
    My friend Shannon and happened to notice this. Don't mean
    to intrude but want you to know that she will most likely
    be along to respond. I'm waiting on my Post to hear from
    her also.

    Sounds as if you've had an awlful tough time for a long
    time. From what I read, I have a tremendous admiration
    for your resilence and accomplishment! Do apply for that
    Soc. Sec. as it can be of a great help to you in so many
    ways. www.disabilitysecrets.com has a lot of useful info.
    as well as other sites. Peeps on the Board will be happy
    to help anyway they can as many have had a great deal of
    experience with it!

    Have a great day and keep up the Good Fight!
    Joe
    P.S. Was that your Pic on the Post or that of Shannon?
    Now I'm really confused![This Message was Edited on 11/01/2006]
  4. Gothbubbles

    Gothbubbles New Member

    Thank you for your kind words! I don't think I've been through anything worse than other people on here, and probably you and shannon.

    A lot of people with CFS are probably homeless or worse (i hear suicide rate is high).

    I have applied and my first appeal is in the works. I made a big mistake in how I reported income, and I made it to stage 5 (IE they considered me disabled, but they said i made too much). With the mistake corrected I'm hopeful they'll approve me.

    The pic on my profile is me, though shannon says she's a spitting image.
  5. Gothbubbles

    Gothbubbles New Member

    bump for shannon
  6. Gothbubbles

    Gothbubbles New Member

    Bump for shannon
  7. Shannonsparkles

    Shannonsparkles New Member

    Thanks for being so patient. I'm not much for computer usage (or remembering to check my messages - or remembering that I wrote something) a lot of the time. Mrdad likes to remind me, thank goodness!

    So you're on your own! I'm living with my dad. I'd be in some kind of nursing home otherwise, and that wouldn't be nearly as quiet or chemical-free. I spend the day on the couch. I've got four recorders (those flute things from elementary school) stuffed between the couch cushions, a pocket sized 1950s school dictionary, a word origins dictionary, a journal/sketchbook, a stash of too-tired-to-get-up food, and at least 40 library books within arms reach. It's tidier than it sounds. :) I can also reach my pill bottles, the TV remote and a large jug of water. I've got a heater set up, and I wear flannel pajamas and a thick wool blanket over everything. So stretches the domain of the Mighty Shannon. ;) I can look out the window too, but that takes some turning around so I mostly save it for special occasions, like Garbage Day.

    My story... I was a child till the age of seven. Then I grew up. I became the stand-in mommy in charge of my four year old brothers and the emotional crutch of my dad. (The babysitters were inconsistant and irresponsible. I ended up doing their job - and raising myself.) It was very bleak and depressing. Mom died suddenly from an irregular heartbeat caused by a prescription med.

    I got headaches and other minor illness things before she died. My illness was progressive. I scraped through high school, graduating with the minimum number of credits. I had to choose easy classes and a free block, and I missed a lot of days. Weekends and time after school were for lying down in a stupor. I continued to get sicker after graduation.

    I think I would have gotten this disease whether or not I had the stress going on. All my relatives are seriously diseased in one way or another. Also, I was exposed to a lot of arsenic and other metals in the town's water supply, and contracted lyme disease from local ticks... and that's just the factors we know about. I got every virus every time. Migranes, poor sleep. I was never well, but I used to be more mobile, anyway.

    Sorry I can't write more for now. Too tired.

    Talk to you again. Tell me more about yourself. :) Have you seen the new chit chat board here?
    (( )) Shannon