Path: utzoo!utgpu!news-server.csri.toronto.edu!cs.utexas.edu!yale!bunker!hcap!hnews!360!1.59!Nadine.Thomas From: Nadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) Newsgroups: misc.handicap Subject: Lupus Message-ID: <12827@bunker.UUCP> Date: 17 Jul 90 19:45:08 GMT Sender: wtm@bunker.UUCP Reply-To: Nadine.Thomas@p59.f1.n360.z1.fidonet.org Distribution: misc Organization: FidoNet node 1:360/1.59 - Augusta Forum, North Augusta SC Lines: 131 Approved: wtm@bunker.UUCP Index Number: 9224 I wanted to quote your message but I would have had to quote the whole thing so I will just try to answer as best I can. I am doing fair right now - that is better then I have been so there is some improvement. A few minor setbacks but that's expected I guess. Not being `official' is like living in a constant state of limbo - it is not that we want to have something wrong but that we want to have a label for it so we can let out a big breath and get on with living (sound like it fits?) First, rheumatologists are the ones who are `supposed' to know all about lupus (hahahaha). Yes, your internist can be VERY off base and out of touch with lupus. I do not have the butterfly rash at all but I burn very badly and I don't even have to be exposed to the sun - I burn through clothes. Yes, you do have to be very careful with sunlight AND many have problems with flourescent lights too. Docs, will try and screw your head a bit more loose then it is now over this. They hesitate (and I don't know why) to diagnose Lupus - it is weird but a fact - meanwhile our frustration level is out of sight and depression at an all time low and then we are told that we need to keep busy and not think about it so we wouldn't be depressed etc. It is always a kick when we are hurting and the doc says "it's not active" yep I know that one too. I also have the nodules. Do your best to stay off the Steroids - I have developed diabetes from them and I was in a life threatening situation not over the past almost 2 years. They are trying to wean me off them and I won't get into that story this time. Keep on them to do kidney function tests (blood) - don't just let them do the care planning- you insist on being an active participant in your own case management. I went into docs a couple of weeks ago and told them what needed to be done and they listened to me for a change because I went in assertive and not in the victim stance of whimpering and putting them in the god status. Plaquanil has been known to help some people - I could not take it cause the first pill I took I felt like a caged animal - I could not sit still, I paced the house, I was soooooo agitated. Polyarthritis is one of the catch-alls used when they don't know and `THEY' want to put a label on it - it helps their tender ego's. Depression is the other catch-all they will use - B*LL SH*T - Don't let the jerks get to you. We know when we are depressed and when we are not. Don't try to compare yourself with your sister - you can both have the same thing but react differently to it. No hints - you need to ask doc straight out if you are diabetic or if there are unusual signs that there is something wrong with your pancreas - you could be on the verge of getting diabetes and your sugars are bouncing all over the place - if there is ANY question at all about your sugar levels then request that you be set up to test your own blood sugar levels at home. I don't like the idea that your swelling is so severe that your hands become numb - you need to agressively address that with the docs. As far as your internist telling you you don't have to worry about light - he is full of the bull I mentioned earlier. Yes, he can and is out in left field someplace. The rheumatologist - too bad he is so hung up on his own self-importance - he might have become a great doc. Bedside manner is VERY important - you may need to tell him that part of what you need is for him to sit with you and help you to become part of your own health management by explaining the terms he so casually tosses out and then tells you it is really complex etc. Glad you were persistant with him. I had a doc once who even brought me published articles to read so I COULD be a part of my own care management. Yes, the worst part of all this is feeling alone. I would suggest that you find the number and location of the Lupus foundation nearest you so you can get `official' information and not some of the garbage in the medical journals. Also, they have support groups that can be a big help to you. The one here has video tapes and books to borrow too. RF> to know so much. I have not had the chance to talk to anyone else RF> with this condition. I guess mostly I would like to tell you what RF> I've gone through up to this point and see if it fits in. Mostly RF> I'm frustrated. I know something is going on and if it was inactive RF> I find it hard to believe my mouth would be raw and my skin would RF> always burns as it does now. I'm here and I'm listening. I do understand and I have been through it all too. Yep, it all fits and is normal. You are not making it up, you are not causing anything to happen, it is not all in your head. RF> Is this a good place to do that? Do you have access to netmail? RF> That would be a better place, as I don't know if these kinds of RF> messages are wanted here. Strange as it seems even to me, I want RF> to be made official but based on what I've read that is compeletly RF> normal. Did you go through this? Have others you've known? Does RF> it take a trip to the emergency room to get someones attention? This is a good place to talk -I can RECEIVE netmail but not send it. There is only ONE person who is complaining about these `kinds' of messages and no one is paying attention to him anyway so post ahead. One thing I have found here is that I can gain a lot from reading what others are going through - like learning I am not unique, I am not alone, there are people who actually understand even if they have not been through the exact same things etc. I have gotten lots of support when I have needed it most and I have been able to turn around and pass it on to others who need it too. Yes, wanting a label is normal. Yes, I went through it too. Yes, others I know have also gone through it. Sometimes ER trips help and sometimes not but it seems that if you tell them you have lupus you will get faster service. Be real careful of narcotics too - they can get you into a cycle that can be difficult to get out of. Also, it will be rough when you might need them for surgery or something like that and your threshhold for the meds is too high. If you are really too uncomfortable posting here I can get my address to you and we can exchange tape letters. I will leave this up to you to let me know what you are feeling. RF> Aren't you glad I deleted the long message. >grin< No. I like reading.[grin back to you]. Nadine Alias: Fido Bandido *NUMERO UNO ON FIDONET MOST WANTED LIST* -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.org