Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!usc!snorkelwacker!mintaka!yale!bunker!hcap!hnews!123!13!Patricia.Ferguson From: Patricia.Ferguson@f13.n123.z1.fidonet.org (Patricia Ferguson) Newsgroups: misc.handicap Subject: Lupus Message-ID: <12830@bunker.UUCP> Date: 17 Jul 90 19:45:52 GMT Sender: wtm@bunker.UUCP Reply-To: Patricia.Ferguson@f13.n123.z1.fidonet.org Distribution: misc Organization: FidoNet node 1:123/13 - The NiteMare BBS, Memphis TN Lines: 110 Approved: wtm@bunker.UUCP Index Number: 9227 NT> time. Keep on them to do kidney function tests (blood) - Nadine, what sort of blood test would they do and what kind of results would they look for. We have Rusty's blood test, one from March and another from May, so we can compare a little. But we really dont know what to look for or really even what to ask at this point. Any suggestions? NT> Lupus - it is weird but a fact - meanwhile our frustration NT> level is out of sight and depression at an all time low and NT> then we are told that we need to keep busy and not think NT> about it so we wouldn't be depressed etc. Gee, that sounds rather hard to do doesn't it but the doctors seem to think that they know "whats best" sometimes without asking the patient how they really feel. Assumption of real depression and not the actual pain and frustration of a "disease" type of depression seems to be rather common I've learned. NT> It is always a kick when we are hurting and the doc says NT> "it's not active" yep I know that one too. I also have the Active or inactive, that is the question!! Now how do you tell the difference yourself, and not according the the doctors? Any hints? NT> developed diabetes from them and I was in a life threatening NT> situation not over the past almost 2 years. They are trying NT> to wean me off them and I won't get into that story this I wish you good luck on getting off the steroids. My grandmother had rheumatoid arthrits (and I cant help but wonder about lupus too, since she also had many, many other problems and a sister with diagnosed lupus) and she became "hooked" on Percodans for the pain. It took a long time to wean her of them but they did it! Hope it doesnt cause to much discomfort. NT> being an active participant in your own case management. I Unfortunately, with an HMO plan such as ours, his time is very limited. But we have contacted the Arthritis, lupus and etc local foundations. We have received a lot of good information. Just seems like we have a "thirst" for more though. They do have a local support type group here but unfortunately we cant afford the babysitter right now. But I'm going to continue to try and arrange to be able to go somehow. NT> Plaquanil has been known to help some people - I could not NT> take it cause the first pill I took I felt like a caged NT> animal - I could not sit still, I paced the house, I was NT> soooooo agitated. Polyarthritis is one of the catch-alls I'm hoping he doesnt have to go on Plaquanil. Sometimes the side affects of these medications seem to do more damage than good. NT> at all about your sugar levels then request that you be set NT> up to test your own blood sugar levels at home. I don't like We have tested it occasionally with urine test strips at home but not any blood tests at home. He did have a glucose tolerance test at the docs but they didnt seem very "impressed" at the time. NT> once who even brought me published articles to read so I Any suggested reading material? NT> video tapes and books to borrow too. I havent thought of that. Maybe I need to check into that also. I'm about to exhaust the public library! Any suggestions here? NT> I'm here and I'm listening. I do understand and I have been NT> through it all too. Yep, it all fits and is normal. You I'm so glad you are here for Rusty and I to talk with. It is really giving him problems on not knowing for sure what is happening. And it is not doing me a bit of good watching him and worrying about it also. Seems like when he hurts I feel as though I hurt too. I know I cant relate as well to his problem as perhaps you can. I appreciate your input to both of us. NT> him anyway so post ahead. One thing I have found here is NT> that I can gain a lot from reading what others are going NT> through - like learning I am not unique, I am not alone, NT> there are people who actually understand even if they have NT> not been through the exact same things etc. NT> I have gotten lots of support when I have needed it most and NT> I have been able to turn around and pass it on to others who NT> need it too. Support is obviously a big key. Thanks again for listening and relating to the issue so well. NT> Yes, others I know have also gone through it. Sometimes ER NT> trips help and sometimes not but it seems that if you tell NT> them you have lupus you will get faster service. Be real We haven't had to hit the ER yet. I hope we dont have to but I guess we have to face it that it could happen. Thats another thing I worry about. How do I know when to take him. He has so much going on now, its scary. NT> RF> Aren't you glad I deleted the long message. >grin< NT> No. I like reading.[grin back to you]. And he thought he left long messages, huh?! (grin) Thanks again and hope you are feeling better each day. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13!Patricia.Ferguson Internet: Patricia.Ferguson@f13.n123.z1.fidonet.org