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: This Conference Message-ID: <12968@bunker.UUCP> Date: 20 Jul 90 20:18:19 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: 59 Approved: wtm@bunker.UUCP Index Number: 9358 In a message to Nadine Thomas <13 Jul 90 20:42:00> Patricia Ferguson wrote: PF> it. Any idea what I can do (and this may be one of the impossible PF> to answer questions!) to help lessen the confusion on both his part PF> and mine? We are reading what we can on SLE. Are there any specific PF> books that might help with the day to day aspects of what is going PF> on... you know, the reality books and not the medical jargon. Well, it seems you are starting to do what is necessary - reading material from the Lupus Foundation. I would strongly recommend checking a local mental health clinic that would have sliding scale and free counseling. PF> Also, I hope I'm not getting too personal here but I was curious as PF> to how long you have had lupus, how old you are, if you have a PF> spouse or children and how you cope with family members and friends PF> asking questions. Since we have children, I worry about what to tell PF> them and when. I want to be completely honest with them, but on the PF> other hand I dont want to upset them to the point of "uncertainty". I am 42 and I have had rheumatoid arthritis for 13 years and lupus about 4 years. I am divorced, one kid (with his dad). Ex did not believe I had anything wrong and made it very difficult for me (even when I had 103.6 fever). My son was visiting me the past 3 summers - because of an incident that happened last summer I was not going to allow him to visit this summer but my health situation has been such that I would not be able to take care of him anyway (he is very active 12 year old). The past summers I just let him know that there were things I could not do and that I needed to rest a lot. There were a couple of hastles but for the most part he was okay. I am very careful to NOT put him in the `caretaker' role. He is a child and needs to do his job of being a child well. I do not lie about what is going on but I don't tell him all the details. When questions are asked I answer them to the best of my ability. I live alone (with my dog who is trained to help me). Children don't need the `brutal' truth and most don't want it - they just want to know the barest minimum and tend to get bored when anyone goes into details (of course all children are different and some may want ALL the details). You can pick and choose what you want them to know but NEVER lie to them. Certain groundrules may need to be set....if I say I am tired there will be no arguing and we are to return home or stop whatever activity we are doing. I nap each day and we need to make plans around that time. etc. PF> And I needed that pat on the back too. That was as good as a hug PF> via phone lines! (grin) Thanks again Nadine. Take care... You betcha! You take care too. 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