Patricia.Ferguson@f13.n123.z1.fidonet.org (Patricia Ferguson) (07/18/90)
Index Number: 9228
MR> experience, but if anyone has problems dealing with or
MR> living with muscular diseases, I may be able to share some
MR> experiences and helful hints/ideas !
Thank you so much for offering! I've been reading this for a little while
and didnt really know where or when to jump in to ask a few serious
questions. I need to know a little about the musculo-skeletal problems with
systemic lupus erythamatoses (SP?). I have so many thoughts running through
my head about what must be going on inside of someone with this type problem
but I know that unless I experience it myself I will not fully understand
them. Since I dont have the disease but a loved one does, I want to try
and understand as much as I can about what is going on and I hope that by
talking with others that have similar problems that I might be able to. I
dont want to appear insensitive to anyone and I dont really know the "right"
questions to ask. If it is not too painful, I would appreciate someone
sharing random experiences and helpful hints or ideas with me.
Everyone here seems to be well adjusted to their individual situations,
whatever they may be, and I must say that I have a tremendous respect for
all here. Thanks in advance, just for allowing me to observe and ask a few
questions.
Patricia
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13!Patricia.Ferguson
Internet: Patricia.Ferguson@f13.n123.z1.fidonet.orgNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/21/90)
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