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: <12890@bunker.UUCP> Date: 18 Jul 90 20:54:06 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: 157 Approved: wtm@bunker.UUCP Index Number: 9283 In a message to Nadine Thomas <07 Jul 90 17:15:00> Patricia Ferguson wrote: PF> March and another from May, so we can compare a little. But we PF> really dont know what to look for or really even what to ask at this PF> point. Any suggestions? Since you have an HMO then you have a primary physician. He is going to have to be your link to the `god's gift to us all' specialists and the tests. Hee hee - seriously, he is the one you will need to establish a good working relationship with. He is the one you will want to request 40 minute clinic visits to so you can sit down and ask him these same questions. You need to tell him you need information so you can both be a part of the care planning. I only see the specialists when I absolutely have to (yuck) - seeing them is like having to take um, er, ah, vitamins! (giggle) PF> to think that they know "whats best" sometimes without asking the PF> patient how they really feel. Assumption of real depression and not PF> the actual pain and frustration of a "disease" type of depression PF> seems to be rather common I've learned. Yep. PF> Active or inactive, that is the question!! PF> Now how do you tell the difference yourself, and not according the PF> the doctors? Any hints? Pretty simple, if I am hurting it is active. If I am fatigued and *I KNOW* it is not depression it is active. etc. I got to know my body - my problem was not letting them tell me it was all in my head and believing them. I took a stand a few months ago after I had attended my *first* lupus support group (I had my head buried for several years until about a year ago). I had received many pamphlets and armed with that information, what I was feeling, and what I heard I suggested to my primary doc that the lupus was active - he said he didn't think so and I told him what I was using for criteria. Had appointment with him 3 days later and he told me that he did some research and reading and agreed with me (takes a good doc to back off of a stand). So what I am saying is Rusty needs to trust himself and trust his body. PF> diagnosed lupus) and she became "hooked" on Percodans for the pain. PF> It took a long time to wean her of them but they did it! Hope it PF> doesnt cause to much discomfort. That is another part of the problem - In the docs wanting to be able to do SOMETHING they will GLADLY hand out scripts for percodan etc. cause then they don't feel helpless. After all we put them on a pedestal and they have to live up to the reputation and expectations. So, we need to realize their limitations to begin with. All narcotics and pain meds need to be last resort meds.... I know and your sister knows. This is because we have a chronic pain condition. Once started on the pain meds your threshold for the meds increases (then you need more and more to do the same job). Trust me on this one. Use tylenol, aspirin, ibuprofin, any over the counter type stuff like that - AS DIRECTED. Get into meditation, biofeedback, relaxation. I had a special visualization tape made for me by a therapist and I use it EVERYDAY. I have yet to listen to it in its entirety because I fall asleep every time. (grin) Can't be more relaxed then that! >PF> Unfortunately, with an HMO plan such as ours, his time is very PF> limited. But we have contacted the Arthritis, lupus and etc local PF> foundations. We have received a lot of good information. Just PF> seems like we have a "thirst" for more though. They do have a local PF> support type group here but unfortunately we cant afford the PF> babysitter right now. But I'm going to continue to try and arrange PF> to be able to go somehow. How about each of you alternating going - one who goes takes notes or asks if recording the meeting is possible. The one at home gets a FULL report afterwards. Or, arrange with a friend on the barter plan for them to watch kid(s) and you will either watch theirs in exchange or maybe cook one meal and have them over. There is always a way. PF> I'm hoping he doesnt have to go on Plaquanil. Sometimes the side PF> affects of these medications seem to do more damage than good. You don't know - he may get LOTS of relief from it so hold off on the judgement. If he has side affects then he stops the meds (with doc being notified first - some meds need to be weaned or they can do great harm). PF> We have tested it occasionally with urine test strips at home but PF> not any blood tests at home. He did have a glucose tolerance test PF> at the docs but they didnt seem very "impressed" at the time. I *never* spill into my urine - no matter how high I have been. If you know of someone who is in the support groups or that you know personally that has a blood test monitor, Rusty may want to work out a schedule each day or they may loan it to him, to test his sugar levels and work up a chart. If this is possible then I can give you an idea of how many times etc. PF> I'm about to exhaust the public library! Any suggestions here? No suggestions - I am still trying to get myself to borrow them (blush). PF> I'm so glad you are here for Rusty and I to talk with. It is really PF> giving him problems on not knowing for sure what is happening. And PF> it is not doing me a bit of good watching him and worrying about it PF> also. Seems like when he hurts I feel as though I hurt too. I know PF> I cant relate as well to his problem as perhaps you can. I PF> appreciate your input to both of us. One thing that is necessary is to have as normal a life as possible. You need time away from Rusty and the kids, he needs time away from you and the kids, and the kids need time away from the both of you. Since you have an HMO you may want to look into what type of counseling they have available and if they have one who specializes in counseling for the disabled and their families. My guess is that you are going on burn-out pace and that can be dangerous to you as well as your relationship. Hopefully you are both discussing your fears and not keeping them from each other so that you`won't worry' your partner. This is very involved and outside help can be real helpful right now in setting up your communication groundrules and allowing a bridge to talk to each other without fear of the other one falling apart or being absolutely devastated etc. You don't have to relate to his problems but you sure do need to relate to your own and not keep putting your needs aside - it will catch up with both of you. PF> Support is obviously a big key. Thanks again for listening and PF> relating to the issue so well. Your welcome - thank you - it helps me too to hear from both of you. PF> We haven't had to hit the ER yet. I hope we dont have to but I PF> guess we have to face it that it could happen. Thats another thing PF> I worry about. How do I know when to take him. He has so much going PF> on now, its scary. How do you know when to take the kid to the ER? Trust your and Rusty's instincts. Running high fever, extreme pain, etc. You will know. PF> And he thought he left long messages, huh?! (grin) Thanks again and PF> hope you are feeling better each day. Take care and look forward to another message from 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 -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.org