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Thread: Disibility Placard and Appointment

  1. #1
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    Default Disibility Placard and Appointment

    So I got my disibility stuff for my car in the mail today after lots of fun because my doctor obviously didnt know what she was supposed to be filling out. So now I've registered with disibility services at school and have the handicap parking thing soo thats all good. Im trying to get all set up for school this week. I only have like a week or so left before classes. I got a book today at Borders at their going out of business sale (booooo) thats about women and different autoimmune diseases. I think its pretty informative so far just looking through it.

    I have a question btw, do any of you have a problem with your fingers pruning like crazy from like washing your hands or taking a shower? I told my doctor and she kind of laughed like she'd never had someone complain about that before. It makes my hands feel weird and feel kinda stuck. And my doc finally said I definately have some autonomic issues, but said "you've probably had some underlying autonomic problem since you were little" but isn't it more likely some of my first lupus symptoms were the autonomic ones? Seems likely to me. And if I have another "underlying" disease why isn't she doing anything for that? and she's always talking about how I have vascular problems but doesnt really say what. And this last time I went I felt like she was talking more to the doctor she had with her, because Childrens is a teaching hospital, than she was with me. My mom kind of agreed. She also basically completely dismissed my recent stomach problems. I told her everything from the past two months. She mentioned tests and stuff and was like but we've done that before right and I was like no we havent and then she just dropped it. So I have no idea if she was planning on doing those tests and was just stupid and forgot she mentioned them. At the end of my appointment I asked again what to do for my stomach and she said to keep taking prilosec and tums.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    while it is awesome that you finally got your disability stuff, it kinda sucks that your doctor was acting like that :/ Well, kind of really sucks. Her brushing you off must be irritating as heck... I hope your next appointment goes better than that one, for sure!!!

    Good luck with college! You must be excited

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    The autonomic stuff is REALLY tough. We have been trying to get my daughter's autonomic symptoms figured out and it's like banging our heads against the wall. No one wants to deal with it in Colorado. We've been told that there are only a handful of places in the country that it is being diagnosed and treated. If you find some help, I'd sure love to hear about it. The jerk of neurologist my daughter saw the other day said that Mayo Clinic is the place to go, but they don't participate in our insurace.

    Can you self-refer to a gastroenterologist, or ask the doctor you saw to refer you to someone at the Childrens hospital? My daughter has similar problems and was diagnosed with eosinophilic esophagitis and impared GI motility. The GI doc is having her mix steroids (the kind you run through a nebulizer for asthma) with chocolate syrup and swallow that twice a day. The steroids coat the esophagus and help with the inflammation. Isn't nearly as tasty as it sounds, though LOL.

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    Hey Ritz,
    You are going to LOVE having that disability placard. It will help you so much to park close to the building on those days that you barely have enough energy to drag yourself to class.
    I agree with Gizmo - go see a gastroenterologist - they understand more about the stomach issues.
    Enjoy college - I hope you have great classes.
    Hugs,
    Marla

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    Anybody have that pruning problem? Its driving me crazy because it comes when it shouldnt and lasts longer than it should. I dont know how it works with going to see other docs at Childrens or if they'd even be the right people to see right now. The test she mentioned when I said I WAS having problems with swallowing and really bad reflex but its gotten somewhat better was a swallowing test of some sort but she dropped it even though I said we'd never done it. Im still trying to get my Italian class =/ they were all filled up when I got to register. BUT that wont happen again because Im now in a group of students who get prioty registration over everyone else because of disibility services WOOO
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Disability services can be great. You might be able to get a scribe, or copies of class notes from the professors, or a voice to text computer system through them as well, if writing is a problem.

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    Quote Originally Posted by ritzbit View Post
    Anybody have that pruning problem? Its driving me crazy because it comes when it shouldnt and lasts longer than it should. I dont know how it works with going to see other docs at Childrens or if they'd even be the right people to see right now. The test she mentioned when I said I WAS having problems with swallowing and really bad reflex but its gotten somewhat better was a swallowing test of some sort but she dropped it even though I said we'd never done it. Im still trying to get my Italian class =/ they were all filled up when I got to register. BUT that wont happen again because Im now in a group of students who get prioty registration over everyone else because of disibility services WOOO
    Hi Ritz, good to see you. It's been a long time. I'm sorry to find out your doctor is still lacking in both bedside manner and thoroughness. My hands do the same thing if I forget to wear my gloves, which I often do. But sometimes it happens just after a shower. I mentioned it to my rheumy and she thinks it's connected to Sjogren's Syndrome, which most Lupies also have. As for your tummy issues, have you tried those aloe vera juices? They make a lot of those that taste so good now. Maybe that will help? If that doesn't resolve soon maybe you should see a really good GI?

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    Hey Abbasgirl,
    Good to see you again! How have you been?
    Hugs,
    Marla

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    I was wondering Sjogrens too. I havent been officially diagnosed with it but Im pretty sure me and my rheum both know I have it. If so its been acting up lately. I keep waking up with crust and gunk all dried up around my eyes and my mouth. Its annoying if nothing else. So if this finger thing was related I wouldnt be very surprised. I have tried a few things lately but nothing seems to be helping much. What worries me is that my grandpa said I dont wanna worry you or anything but it sounds like pancreatitis. But my grandma had that so I guess he sees pancrease problems just like I see lupus problems, you know what I mean? I was just hoping she would look into it more.

    SIDE NOTE: Did you guys know that you can get a medical alert sticker put on your license? I just found that out last week and need to get my license sooo thats on my to-do list.
    "A bad cold wouldn't be so annoying if it weren't for the advice of our friends."~ Kin Hubbard

    Diagnosed: SLE, Raynauds, InterstitialLung Disease, GERD, Myositis, Vasculitis, Possible Sjogrens.
    Medications: 400mg Plaquenil, 2000mg Cellcept, 10mg Norvasc, Nitroglycerin Patch, 20mg Prilosec, 10mg Flexeril, 4mg Medrol, 81mg Asprin.

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    Quote Originally Posted by magistramarla View Post
    Hey Abbasgirl,
    Good to see you again! How have you been?
    Hugs,
    Marla
    It's good to see you too Marla! Life is much better these days! *hugs*

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