Attn: ShannonSparkles

Discussion in 'Fibromyalgia Main Forum' started by kholmes, May 30, 2006.

  1. kholmes

    kholmes New Member

    Hello, my newly pimpled friend.

    Guess what I just finished reading?

    Facing the Lion: Memoirs of a Young Girl in Nazi Europe.

    I had to order this through interlibrary loan, and they sent it up to Albuquerque from Prescott, Arizona. It was an amazing book. In fact, I couldn't put it down (well, except when I was too tired to hold it up; I had a heavy, hardbound copy!). What strength, faith and courage she and her family had. I can't believe they all made it through the Lion's den alive.

    Somehow I found a short article that you wrote on an ME site. Did you read the one written by the parents of the girl so sick with CFS that she is constantly in bed in her darkened room, unable to do anything whatsoever? That was unbelievable. It sounds like she is doing a little better, but not much.

    I am so glad that we have the strength to be on this site. I love reading your posts. Sorry the library sent your hold on CURIOUS INCIDENT back when your Dad was away. I think you'd really like it. I'll have to check out THE BRAVEST THING.

    Thanks for your encouragement on the scooter. I actually made it to tail end of graduation at the school where I was teaching a little over a year ago. I got to see about ten of my former students. Some of them have come over to see me periodically in this last year, which is a lot of fun for me.

    Ken

    "Never give up. Never give up. Never give up."
    --Winston Churchill, during WWII
    (too bad most speeches aren't this short and powerful).

  2. kholmes

    kholmes New Member

    (speed bump)
  3. Shannonsparkles

    Shannonsparkles New Member

    How are you doing on the scooter question?

    I got some good news today. Dad's chiropracter has offered to work on me for free. I don't know if it's free permanantly... but he seems to be in for it just because of liking my dad. I'll get my hopes up a little later. I'm too tired to think for now... [yawn]

    After my thyroid appointment, I got dad to take me straight to the Goodwill thrift store for some sorely needed clothing. I'd gained weight, and my jeans were so tight they hurt, plus I didn't have any T-shirts for this year. Can you believe it? I've gone through two Calgary winters owning only ONE sweater! Good old Red. I found two pairs of jeans and some shirts, and a little glass bear that will make a good present for someone some day. I like to buy gifts in advance, because then I'm always ready to give, plus I get to enjoy the item myself in the meantime.

    I was lucky to find an ornamental brass horn from India for $4. It works, though I can't control what sound it makes so far. ;) It's probably not meant to be played at all, but anything musical fascinates me. Once when I was stuck on the floor too weak to get up, I spied an old string of sock elastic and I played Brahm's lullabye on it by twanging it at different tensions. The springiness gave out after awhile and then it would only play one note, but it was fun while it lasted.

    I'm glad you liked Facing the Lion. It's one of the few adult books I was able to read because it's written simply. The pictures help too. Marcel Sutter should have his own monument. The pages about him were my favorite in the book.

    I did read that ME story. I'll have to read it again. I remember that it moved me very much, but I don't remember much of the story itself. (Re-reading this, I think I might be remembering the wrong story! lol) I'm surprised they took my story too. I felt like I had to put in for a good cause, and I don't remember what I wrote. When I didn't hear back from them, I figured they had rejected it. That was okay. Maybe it wasn't right for the site. I kind of hope they left my last name out though. I just don't want anybody to be able to contact me - a personal safety thing.

    I encourage all of us to share our story at the site. I think it was investinme.org, or something like that. Not many people have contributed to the site so far. It could use a hand, and the visitors can use our experiences. (Stepping down from my podium now.)

    Speaking of podiums, I am related to Winston Churchill through my mother's side, though I don't remember exactly how. Nothing direct. But we have a few writers and lumpy Churchill chins on that side, so that's something. :)

    I'm so glad you got to see some of your students! How are they doing?

    What was the name of the rafting in Tibet (?) book that you reccomended a while back? Something about Shangri La? It was on my list too, but now I can't remember it. I'm into the Oz books now, by L. Frank Baum. Just about everybody is nice in the land of Oz, so it's a good change from the usual. I'm starting to read the Redwall series too. I deffinately have a thing for juvenile lit, and not just 'cause my brain don't work so good no more.

    Bambi, by Felix Salten, is a very good read. One whole chapter is two leaves talking together in Autumn. In the book, you'll get to meet - truly - Bambi's little brother Gobo. I wouldn't call it a kid's book. It's a gracefully written fantasy that makes a nest in the chest of anyone reading it. :) I think you might like it if you get to read it some day. There's a sequel too, called Bambi's Children, in which on of Bambi's fawns is caged and tamed until he starts to forget who he is.

    I've got some insomnia going on for now. It's from the thyroid appointment and shopping. If I go to far, I either crash or get insomnia or both. This morning I watched Kung Fu: The Legend Continues, and Caine character knocked a bad guy out just by touching him. Now if only Caine was real and lived in Calgary and took Alberta health insurance! I'd have him over every night! :D

    I'm eagerly awaiting some scooter tales, O Adventuresome One.
    (((drive carefully))) Shannon
  4. kholmes

    kholmes New Member

    And I thought your last name was really "Sparkles" all this time!

    The story on the InvestinMe site that I was thinking about was Suzy's. I sure hope she is doing better. I always hope the same, of course, for you!

    Congrats on the free chiropractic sessions! I hope that makes a difference. Good for you for the clothes shopping, too. Were you able to walk around in the store, or were you wheeled? After a year of wearing jeans, t-shirts, sweatshirts, it feels funny to put on a nice shirt, dress shoes, and a pair of Dockers. It makes me feel like I'm a real person! But like you, I don't think I can make it to church yet.

    The book you're thinking of was called THE LAST RIVER: THE TRAGIC RACE FOR SHANGRI-LA. It's about the rivalry among explorers, rafters, spiritual seekers, and adventurers, often with enormous egos, to explore the Tsangpo River in Tibet, which flows through the deepest gorge in the world down into India. For some reason, though my body is so limited, I'm still really into the explorer, mountaineering, expedition lit. thing.

    The Scooter search continues! My insurance company probably won't cover the cost (where is Kung Fu Caine when I need him?), but there is an office called Assisted Living here in Albuquerque that will put me on a waiting list for a scooter for several months, and will probably pay for a scooter for me! They've already given me a free used wheelchair. If they pay for the scooter (the lightweight type I'm looking at runs between $700 and $1500; they cost an arm and a leg!), I'll make a big donation to them. I wonder if there is something comparable to Assisted Living in Calgary.

    Somewhere I remember you saying your mother passed away. How old were you when you lost her, if you don't mind me asking? My mother died when I was 14. I wonder sometimes if the stress over losing her weakened my immune system a bit in my high school years.

    Hey, I had an idea. Do you want to write a short story together? You could start it by writing an opening paragraph, post it here, then I could write the next paragraph, then back to you, then back to me, etc... until we come to an ending. It's kind of a fun writing exercise, even if turns out to be absolutely awful.

    Ken




    [This Message was Edited on 06/01/2006]
    [This Message was Edited on 06/01/2006]
  5. Shannonsparkles

    Shannonsparkles New Member

    You even look a bit like Sherlock Holmes in profile. :)

    In my early teens I made up my mind to read all the Sherlock Holmes stories and novels, and I really did it, in only three months. I read the last story just five minutes before crossing the US border back into Canada on holiday. I was so sad that the adventures were over that I felt like crying. I was told to "look happy", which I promptly did, so that the border gaurd wouldn't see anything suspicious.

    My real last name is so unusual that you could never guess it. In elementary school, the teachers frequently spelled it wrong. I am the only young woman of my family name in all of Canada.

    I walked in the thrift store. I couldn't have done it otherwise. There's a life-or-death kind of energy that I sometimes can tap into for things like having a bath. I KNEW I needed those jeans.

    Outside the store, I said to Dad, "Time me. Ten minutes and I'm out." Ten minutes is the maximum time I can normally stand up in a day. I was already into my life-or-death-use-only energy supply from having to sit up in the wheelchair so long for the appointment.

    I swept in there like a tornado. I grabbed two pairs of jeans off the rack after barely looking at them, and to my surprise, both pairs fit. It was a Twilight Zone moment. "How many minutes left?" I asked Dad. There were four.

    I had no shirts for this year, so that was the next thing. In minutes, I had about ten shirts dangling on my aching arm. But someone was in the changeroom for a very very long time, and then there was the time it took to try them all on, the time to wait in line...

    I really was in desperate straits for clothes. People sometimes see me doing "normal" things, and assume I can't be all that sick. I remind them about an ordinary mother lifting a Buick off her trapped child. I tell them that that's the kind of strength it takes me to walk or use the phone.

    Sorry about the long waitlist for your scooter. Will you get flame decals, or something sporty? ;) I hope Assisted Living will cover it. I'm glad you're on the list. Several months seems like a long time, but it will pass, and you'll be ready. Good for you! :)

    I'm trying an unusual strategy to find a new GP (one who believes I am sick and might possibly be able to do something). I called a compounding pharmcy and asked who prescribes dessicated thyroid. Not many docs use it, just the more progressive ones. I also got the names and numbers of docs who attended a recent CFS conference. There were six names altogether. One has a waitlist of a year (I'm on the waitlist! smile), the other isn't covered by insurance, and I have four yet to hear from.

    The struggle for a new doc, along with the tough week following the appointment with a throid specialist who didn't seem to know about thyroids, has made me aware of my limitations. Hopefully the rosy haze of memory loss will close over me soon so things can get back to normal.

    I worry about the chiropractic appointment, because it will mean breaking up my sleep again and having to sit up for an hour in the van, and having to bathe again so soon. I am motivated to try everything to improve my health, but I wonder if this will put more strain on me. I feel like I'm gambling.

    I would love to try writing stories. Good idea, K. I used to do that with my aunts and grandma through e-mail, where we would each take a turn. I eventually stopped because everybody in the story was always getting killed or going dramatically insane (not boring, day-to-day insane, like the rest of us - wink) and it got too stressful for me. I did write one happy ending for them though.

    Your idea, so your turn first, if you don't mind. :) This sounds like a lot of fun! Just put my username in the thread title so I can spot it. :) Looking forward.

    Kh, I cried when I read about your mom dying. The gentler people seem to be the ones who have lived through h***. I'm so sorry that this happened to you too. ((( )))

    Not to offend, but if you start a thread about parent loss, you will get lots of responses from people who have more to give than I. I want to listen, but it brings up a lot for me. It's hard for me to talk about too. My mom died when I was 7.
    ((hugs)) Shannon




    [This Message was Edited on 06/02/2006]
  6. kholmes

    kholmes New Member

    (That's a Navajo name; I figured that might be it)

    Sounds like you're being aggressive about finding a good doctor. The chiropractic treatment might be more trouble than its worth, then?

    I can't believe you read the entire Sherlock Holmes oeuvre. I love setting goals for myself like that. I put a Holmes anthology on hold at the library a while back, to revisit a few stories that I had read as a kid, but it was way too big and heavy for me to carry home! "The Speckled Band" was always my favorite.

    Your shopping trip sounds like quite the excursion. I hope it didn't make you worse. Bathing is still difficult for me, too. I use a blue REI camp chair and a nozzle attachment, so I can sit in the shower. My shower curtain has a map of the world on it, so I can study geography while shampooing. Showering while standing up is still too strenuous, and just getting up from a bath leaves me feeling shaky. Could just be deconditiong, but I think there is more to it than that.

    Sorry to bring up a sensitive area with the loss of your mother. I was thinking about doing a post on parental loss, but I might wait a bit. Do you think it would be a good idea to post a question about this?

    Hmm...scooter design. In my pre-CFS life, used to ride motorcycles, so I want a 750 cc scooter, in two-tone midnight blue, with disk brakes and fuel injection, leather saddle bags, and a windshield for cross-country travel. Maybe I'll get a helmet with the American flag on it, like Peter Fonda's in EASY RIDER. I wonder if I could ride it to a Hell's Angels rally? Or better yet, maybe I can be the first person to ride an electric scooter from Banff to Jasper.

    So you want me to start the story, eh? Ok, I'll have to think about an opening...

    Kholmes
  7. Shannonsparkles

    Shannonsparkles New Member

    Sorry to put the ball back in your court. I couldn't think of a single thing to start a story with lastnight. I'm not much of an idea person, I suppose, and I'm (this may surprise you!) shy. I can come up with something though, I think. I might even take a crack at it today, if my brain floats back to me... yess, the braaaaiiin... [mad scientist laughter]

    So, you had a motorcycle! Dad used to ride one too. I remember we were driving the winding road to the Oregon caves one summer, and he said this would be the perfect place to have his bike back again. Did you ever see the movie (I forget the name) where an old man rode a lawnmower across several states to visit his brother? Start with the mailbox, holmsie. :)

    I'll probably do the chiro eventally. I just need to put it off. Two outings in two weeks is too much to ask. I'm going to keep resting and try to get my sleep schedule more normal. I don't know how I can manage chiro when I couldn't even keep up with the accupuncture, and accupuncture was much closer to the house. But, I'd like to do it at least once. I just need to rest first!!

    Deffinately do the thread on parent loss. There was one thread along these lines months back (the title was something like "did you take on parent roles as children?"), and it got lots of replies and seemed to be a good release for people. I'm interested in this too. It's just hard for me to talk about it still. Dad didn't validate my feelings as the time, and I feel like I'm being weak and bad if I mention that I had any problems of my own. I would like to know who has had experiences simaler to ours. The thread is a very good idea. (( ))

    I feel a bit uncomfortable about asking you personal questions, so don't anwer if it's innapropriate, but, was your dad a good guy? Did he take care of things, or did you get a lot of responsibility placed on you after your mom died? I had to take on most of the childcare for my four-year-old twin brothers after my mom died, and also, dad would unburden himself to me about his serrious problems, while discounting mine. I had to mature really fast. I feel that I haven't learned how to take care of myself, or how it is appropriate for other people to treat me. That's why this board is so good. I have never been listened to, respected or taken serriously anywhere but here.

    Okay, I'm going to shut of my inner editor and try to write a paragraph or two creatively for the story. Goodbye, shyness! ... HELLO awkwardness! ;)
    ((hugs & friendship)) Shannon
    P.S. Nope, you didn't guess my name. Maybe next time. lol
    [This Message was Edited on 06/02/2006]
  8. Shannonsparkles

    Shannonsparkles New Member

    Prepare to be baffled! lolol I'm sure you can take it wherever it needs to go next. Oh, the suspense!! Be as wacky as you like. You wouldn't believe the stuff that happened in the stories my relatives and I did. :D

    ((tc)) Shannon
  9. kholmes

    kholmes New Member

    I don't mind at all your asking about my Dad. He was supportive after my mother's death, fortunately, though he was a bit distant at times. I don't remember having many heart-to-heart talks with him in high school, but that was more due to my not wanting to deal with the loss of mother than with his reticence. But I think he did a fair job looking after my sister and me. My Dad and I would sometimes play golf together, but he would get mad when I beat him.

    My sister, who is older than me, was very rebellious, even in the seventh grade before my Mom died, and would do things like run away from home for two weeks or get kicked out of high school for smoking pot with friends behind the ice arena on campus. I guess my role of responsibility was in being a peacekeeper between my sister and my Dad. It's funny; now she has a husband and three kids and gets along with my Dad beautifully.

    I was also a bit rebellious in my teen and college years, but not to the extent that my sister was. It was more a feeling of--to paraphrase Mark Twain--"When I was eight, I thought my father was the smartest man in the world. When I was eighteen, I thought he was the dumbest man in the world. When I was twenty eight, I was amazed at how much he had learned." But he supported me in everything I wanted to do, from buying a motorcycle to going to film school after college.

    My Dad calls me several times a week now, to see how I'm doing, and we also get along very well.

    I'm sorry you had to deal with what you did in the past: too much responsibility thrust upon you, and not feeling accepted or having your feelings validated, but I'm sure glad your're finding at least some of what you need here.

    Hey, if you think of the title of the movie about the man and the epic lawnmower ride, let me know.

    Meanwhile, I'm trying to think of where to take the Bee story next...

    Ken