PDA

View Full Version : Disibility Placard and Appointment



ritzbit
08-12-2011, 07:48 PM
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.

Elo
08-12-2011, 08:10 PM
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 :)

Gizmo
08-12-2011, 08:47 PM
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.

magistramarla
08-12-2011, 09:20 PM
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

ritzbit
08-13-2011, 05:52 AM
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

Gizmo
08-13-2011, 08:48 AM
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.

abbasgirl
08-13-2011, 03:28 PM
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?

magistramarla
08-13-2011, 08:56 PM
Hey Abbasgirl,
Good to see you again! How have you been?
Hugs,
Marla

ritzbit
08-14-2011, 09:19 AM
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.

abbasgirl
08-15-2011, 01:43 PM
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*

abbasgirl
08-15-2011, 02:08 PM
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.

That sounds like sjogren's...but lupus is such a sneaky wolf! There are many things it could be. And it could have something to do with how some meds have a drying effect. I've got a great rheumy, thanks to Mountaindreamer, and she's been treating Lupus patients for many many years. Her opinion is that 80% of us or more have Sjogren's too.

Do your eyes ever feel sore, gritty, or sting... or do you ever feel pain under your chin or in your cheeks, where the salivary glands are? A dentist can help check for Sjogren's with the way it affects the salivary glands. And a good eye doc could help diagnose for Sjogren's. And by good, I mean good. I saw different eye docs over the years and they either wouldn't even bother checking or were using the wrong tests for diagnosis, or I should say tests that weren't very reliable according to my eye doctor. By the time I found the one I'm seeing now, my eyes are so damaged and it's taking a long time to heal.

As for your skin, especially your hands, I can't sing enough praises about Nivea products. I've tried many but I love nivea the most! But there are times that it gets so bad that I'll bust open some vitamin e and put it on like lotion, and wear gloves ...and the next day, what a difference. Really speeds the healing! That wrinkling can get so bad it's more than uncomfortable. The skin could split. Do you take folic acid? That helps with the skin, nails, and hair. I started taking it in June and starting to see the difference.

I had no idea you can get a sticker on a license! Thanks for that info.

ritzbit
08-16-2011, 08:53 AM
My hands arent DRY though. They just shrivel up, and now the skin is starting to...rip? I guess thats the best word for it. I have all these tears on my fingers that look like paper cuts, but they arent. I showed them to my mom and her first thought was to freak and think that they were the beginning of ulcers but I know those all to well and thats not what these are. I dont know what to think of it. Its annoying me if nothing else, because its not painful or anything. But with all the strange problems going on with my hands its making them hard to use. I cant even wash my hair or wash my hands comfortably because my hair and towels feel so rough against my completely pruned hands. Thats another thing its not just my finger tips like Im used to when being in the pool for awhile. Its my WHOLE HAND everytime it gets wet. Its just weird and annoying and I dont know how to make it better.

steve.b
08-16-2011, 08:15 PM
ritz, i have the same problem.
i was told it is the skin drying out.
try hand moisturiser, and wear gloves over the moisturiser.
i believe doing it while you sleep would be the most convenient.

it should clear in about 2 or 3 days.

abbasgirl
08-18-2011, 09:24 PM
My hands arent DRY though. They just shrivel up, and now the skin is starting to...rip? I guess thats the best word for it. I have all these tears on my fingers that look like paper cuts, but they arent. I showed them to my mom and her first thought was to freak and think that they were the beginning of ulcers but I know those all to well and thats not what these are. I dont know what to think of it. Its annoying me if nothing else, because its not painful or anything. But with all the strange problems going on with my hands its making them hard to use. I cant even wash my hair or wash my hands comfortably because my hair and towels feel so rough against my completely pruned hands. Thats another thing its not just my finger tips like Im used to when being in the pool for awhile. Its my WHOLE HAND everytime it gets wet. Its just weird and annoying and I dont know how to make it better.

How about microfiber towels? Oh how I hate microfiber. I can't stand to touch microfiber. It makes me feel like I must have invisible velcro against my skin. I hate that feeling almost as much as I do nails across a chalk board. Trust me, your hands are dry and need to be pampered. You just can't see it but oh it's there alright. Baby those hands for a while and see if you notice any difference. Like Steve suggested, wear gloves over moisturized hands at bedtime. Use the good stuff too, a really good brand name. And make sure you're getting enough water to drink.

MOMWLUPUS
08-25-2011, 05:47 PM
Well I have a question, I have had SLE for 5 years now without a break I always go in seems like every 3-4 mos at least to get a steroid shot, anyway, since starting Methotrexate over a year ago it has been all I can do keep up for 2-3 days after I take my meds it's makes me so weak I come home from work directly go to bed. My trochanteric bursitis is always inflamed which I've also had numerous cortisone shots in my hip due to this, right now it's so inflammed I can barely walk, so between that and my methotrexate I'm thinkin about askin my rheumie for a handicapped license, what do you guys think? I guess I just feel so guilty for asking ya know.

Gizmo
08-25-2011, 09:20 PM
My attitude is that if parking closer means you will be able to take care of yourself longer, then you should have the placard. One of my daughter's teachers in high school used to brag that she had one because she was under 5 feet tall - then she would wear 3" heels! We have a wheelchair accessible van and would have to load and unload on the street because that crazy woman took the van accessible slot every damn day.

Sorry, off topic. Maybe you would feel more comfortable asking for the placard if you think about it as preserving your hip joint for as long as possible. Every step you don't take saves wear and tear on that joint. Have you talked with your doc about the weakness? Us lupies do have a few more options these days. Maybe even get a second opinion if your regular doctor won't talk about different drugs for lupus.

steve.b
08-26-2011, 03:50 AM
hi mum with lupus,

welcome to our cyber family.
it is my belief, that if you need a parking placard, get one.
anything to make life more bearable.

as others have said on this site, think of it as a vip permit.
you are important enough to have a permit.

ritzbit
08-26-2011, 05:36 AM
I just started college this week. I have bad knees. Now they aren't always bad and sore but walking around campus with a backpack full of a huge binder, books, and a laptop, KILLS my knees. I use it everyday even if my knees arent already hurting because I guarentee they will be by the time Im walking back to my car. They are very helpful I would say get one.

leaann
08-26-2011, 05:50 AM
I just got my handicap parking permit, The first few days I was mad about it but now I realize that I really needed it. My daughter told me to look at it as if I were queen of the town now which I thought was cool. By all means go get one, even though it takes some getting use to, it will well be worth it and you will see that.