Rusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson) (07/11/90)
Index Number: 9093
Is there anyone with Lupus in this echo?
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13.2!Rusty.Ferguson
Internet: Rusty.Ferguson@p2.f13.n123.z1.fidonet.orgNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/18/90)
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*
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgAdrienne.Barhydt@p0.f14.n105.z1.fidonet.org (Adrienne Barhydt) (07/18/90)
Index Number: 9225
> He said one word to me "LUPUS" and walked out the door...At that
> moment though I was devestated, I've never felt that alone.
^^^^^
I'm sorry to change the topic but you said something that really
hit home for me and I really feel the need to talk about it. I
have MS, was diagnosed 7 years ago, and I'll never forget the
moment when the neurologist said your probably have MS. I had no
idea what that meant but I knew it wasn't good. But the most
incredible thing was the aloneness that I felt then.
Jumping 7 years into the future, that's now, I am doing pretty
poorly. I saw my neurolgist last week (a different one) because
the treatment she prescribed to stabilize my condition is not
working. She recommended some real heavy duty drugs and I am
thoroughly freaked out and scared. And again, I got that
incredible aloneness, just like I did on hearing the diagnosis.
There is just nothing like that feeling. I have been alone and
lonely but it's just nothing like this aloneness.
What more can I say?
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!105!14.0!Adrienne.Barhydt
Internet: Adrienne.Barhydt@p0.f14.n105.z1.fidonet.orgPatricia.Ferguson@f13.n123.z1.fidonet.org (Patricia Ferguson) (07/18/90)
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.
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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) (07/19/90)
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*
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Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.org
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgsommers@pilot.njin.net (Mamaliz @ The Soup Kitchen) (07/20/90)
Index Number: 9345 (I do not have Lupus. I have a chronic disease that often mimics Lupus, and is also treated with steroids and handwaving). I am beginning to believe that rheumatologists are just around to make work for psychiatrists. >From Nadine > 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. > > 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 > When I moved to Va I found a rheumatologist. I didn't need one in NJ, my various doctors were cooperating and interested in treating rare illness. My new doctor and my old doctor concured that I needed a specialist in this new state. I have been sick for over 13 years now. We have a pretty good handle on what is wrong with me and how to treat it. The new rheumatologist (highly recommended) treated me like a hypochondriac. He asked me if I was a professional sick person. My roommate was with me, he wanted her to confirm what I said. He asked me how I felt that being sick had cost me my marriage (my husband really appreciated that one when he got home). I have copies of all the current research on my illness, he asked me if I was treating myself. It was a nightmare of a doctor's appointment. I came home screaching and crying, and immedietly called my old doctor (who knows nobody in VA) and asked what I should do. He said I should find a new doctor immediately. A week later the rheumatologist went to a convention and discovered that everything I told him was accurate. He tried to get NIH interested in me (the syndrome is too rare) and tried to find a doctor in the area who knew about the syndrome. He came up with one plastic surgeon. He called me up, apologized, gave me the name of the plastic surgeon, changed my prednisone dosage and asked for the medical literature on my case. I will probably be seeing him again soon. It can get better. I have stopped betting on it. Don't let them treat you like a victim. TELL THEM YOU EXPECTED TO BE TREATED LIKE A HUMAN. lizzy -- lizzy sommers@njin.pilot.net
Nadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/21/90)
Index Number: 9356
In a message to Nadine Thomas <13 Jul 90 16:30:00> Rusty Ferguson wrote:
RF> after he was out of my sight. I'll ask the primary care doc. He
RF> will answer a question if you narrow it down enough.
RF> After they did the first set of blood test, before I knew they
RF> suspected Lupus I called back to ask how the blood test were. The
RF> answer: "ok." This is the same one that showed the positive ANA and
RF> four other important result out of range. Many others on the line.
RF> From now on, I'll ask what is the ANA, the GAMA, and is anything
RF> out of normal ranges. >grin< Later....
No need to beat yourself up... just make a list of specific
questions and present them one at a time to doc and if you are not
satisfied repeat the question till you get an answer - even if it
is a definate `I don't know'.
Speak to either your primary doc or the lab and request a copy of
the tests with the results and norms or a blank form with the norms
listed so you can follow along. You are entitled to copies of all
your records if you so request (but that can get very expensive).
My primary doc sends me the results in the mail and lists the
actual numbers along with his own remarks.
I had a thing on my leg that was like a hole that kept filling with
gunk and I would squeeze it to get it cleaned out. It would get
very sore so finally I told him about it and he removed it and had
it biopsied (he cut out a piece just bigger then the hole so it
would (hopefully) heal in properly. When the results *finally*
came back he sent the familiar taped closed card that said
"basically it was a BIG blackhead on your leg". (GRIN)
Communication lines had to be worked on and I had to express my
needs to him before we could get a smooth flow. He stated back
what he felt he could and could not do and we discussed the
`groundrules'. Kinda like a marriage only without the ceremony and
the sex.(giggle)
Nadine
Alias: Fido Bandido
*NUMERO UNO ON FIDONET MOST WANTED LIST*
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/21/90)
Index Number: 9357
In a message to Nadine Thomas <13 Jul 90 17:02:00> Rusty Ferguson wrote:
RF> I really think I am able to control my sugar problems, whatever they
RF> may be via the diet I'm own and do follow.
Good. Now try to not put on too much weight. Sometimes we don't
realize how much exercise we eliminate when we are sick. Even
though you are walking there are areas (it would me my guess) that
you have cut back on. This is self protection so don't think you
MUST keep increasing energy output if you are feeling worse. You
need to balance your day and rest when your body tells you to. It
is common to overdue the day after not feeling well and having not
fulfilled your `chores'. Try to stay out of that trap. Chores will
get done even if it takes a few days to do them. I have found that
many things can be done from home via the phone, mail, or friends.
I have learned that it is okay to say `no' and even change my mind
if I had originally said `yes'. It gets easier each time you do
it.
RF> Everything went okay at the eye doc and he gave his okay for
RF> Plaquniel (sp). So unless the swelling goes down and stays down I
RF> will get Plaquniel and a diagnosis. That is strange when you think
RF> about it. If the eye doc had said no way you can't go on it, then I
RF> don't have Lupus and if he since he said yes, in six more weeks I'll
RF> most likely be official. >grin<
I know the feeling. It feels good to have the diagnosis and get on
with life. That does not mean I am happy I have what I have but at
least I know what can and can't be done and I can get into a sort
of routine. Sounds like you are doing great!
Nadine
Alias: Fido Bandido
*NUMERO UNO ON FIDONET MOST WANTED LIST*
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgRusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson) (07/24/90)
Index Number: 9448
NT>No need to beat yourself up... just make a list of specific
NT>questions and present them one at a time to doc and if you
I did make a list. >gag< I remembered but some how he side stepped
everything! But I have some good news. I've been telling Patricia for the
last few days, "I think I'm going into remission." I'm feeling better. Got
back my latest blood test, NOTHING out of range and negative ANA. Hmm,
"inactive lupus" has gone into remission? >grin< Only problem is I don't
feel that much better, in fact, I got some sun Sunday and think I may have
flared it back up. I know really stupid. But now the docs will never
believe me. But the rash on my face was really bad yesterday and I almost
made quite a scene at work. I got dizzy and nearly passed out. This dizzy
spell lasted for about 30 seconds and continued even after I stopped
walking. I started looking for help as I thought I was going down and then
it just went away. That and hearing a telephone ring that didn't ring, I
was a foot away from concerns me just a bit. Keeping in mind the "I have
no reason to believe you have anything other than Bell's Palasy" "diagnoses"
I got several years ago. >grin< I recently learned of some things I've
done in the last few months that are rather alarming to say the least. They
are bad enough in themselves but I don't remember doing them and I did it
in front of my children. I'm trying to get up enough nerve to tell the doc
but I'm having trouble with that.
Time for you to be my support group here and tell me this is normal, but if
it is not tell me that too. When I heard that the ANA was now negative, I
was mad and then depressed. It has left, without a diagnoses but for how
long has it left. If only I had a diagnoses so I could feel like I belong
someplace. I do still have some joint swelling and pains here there but I
do feel better. The fatigue has been gone for a week or so now, well, it's
back just a bit now but not like it was. I had six weeks that it took so
much effort to do anything, and then I almost passed out yesterday. My
skin had stopped burning, but after my picnic it is now back.
I think I've found one common thread that so ALMOST all Lupians go through.
So often I read of people with the disease that had this period of intense
frustration while awaiting a diagnoses.
NT>that can get very expensive). My primary doc sends me the
Yea, they want $10.00 a copy! I only pay five for the visit!
NT>properly. When the results *finally* came back he sent the
NT>familiar taped closed card that said
NT>"basically it was a BIG blackhead on your leg". (GRIN)
I get those, been a while since one got bad. Last time it was VERY bad.
Ran a fever with it and the pain was horrible. But I don't know if these
are a part of the disease or not. Maybe blocked pores from swelling.
NT>- even if it is a definate `I don't know'.
I have a lot of respect for that answer. I've only heard a doc say it
twice!
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13.2!Rusty.Ferguson
Internet: Rusty.Ferguson@p2.f13.n123.z1.fidonet.orgRusty.Ferguson@p2.f13.n123.z1.fidonet.org (Rusty Ferguson) (07/24/90)
Index Number: 9450
FW>with the
FW>patient and tell them the truth. Myself, I'd rather know the
FW>worst so
Well, I think the doc has a fine line to walk here. I once heard a doc say
that he often didn't tell a patient every thing the first time. He went on
to say, that he had found that the patient will ask more specific questions
when they are ready for the truth. Okay, I can go along with that, but once
the questions get on track and persistant they need to talk. Since I'm use
an HMO I don't have the freedom to pick the Drs. I want too. I would likely
make some major changes if I did. On the other hand, I'm getting good
medical care so I don't know what is the best way to go. I am getting the
best care that I ever have with this HMO.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!123!13.2!Rusty.Ferguson
Internet: Rusty.Ferguson@p2.f13.n123.z1.fidonet.orgNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/24/90)
Index Number: 9463
In a message to Nadine Thomas <17 Jul 90 21:00:00> Rusty Ferguson wrote:
RF> everything! But I have some good news. I've been telling Patricia
RF> for the last few days, "I think I'm going into remission." I'm
RF> feeling better. Got back my latest blood test, NOTHING out of range
RF> and negative ANA. Hmm, "inactive lupus" has gone into remission?
You can be active with negative ANA. This is a rough area to touch
on. You can have good days and not be in remission. I'm not
telling you that you are not or that you are just that you need to
proceed with caution.
RF> scene at work. I got dizzy and nearly passed out. This dizzy spell
You NEED to talk with the doctor!
>>grin< I recently learned of some things I've done in the last few
RF> months that are rather alarming to say the least. They are bad
RF> enough in themselves but I don't remember doing them and I did it in
RF> front of my children. I'm trying to get up enough nerve to tell the
RF> doc but I'm having trouble with that.
Who are you hurting by not telling the doc? It is important to
tell the doc ALL the symptoms you are experiencing.... It's not
fair to give them only a few symptoms and expect them to diagnose
you. I don't know what it is so I don't know the hesitation.
RF> Time for you to be my support group here and tell me this is normal,
RF> but if it is not tell me that too. When I heard that the ANA was
RF> now negative, I was mad and then depressed. It has left, without a
RF> diagnoses but for how long has it left. If only I had a diagnoses
RF> so I could feel like I belong someplace. I do still have some joint
I'll be a part of your support group and I won't lie to you......I
have not experienced those symptoms and, ofthe people I do know, I
do not know if any of them have experienced them either. I
understand the wanting a diagnosis so you could feel like you
belong - this is normal.
RF> not like it was. I had six weeks that it took so much effort to do
RF> anything, and then I almost passed out yesterday. My skin had
RF> stopped burning, but after my picnic it is now back.
Rusty, you have got to stay out of the sun (which includes the
shade because of reflection). This is an example of what I have
mentioned. You MUST use a sun block whenever you are going out -
even to just get in the car and go someplace etc. Apply it 20
minutes before going out so it can be working when you go out.
Your body can't scream any louder then it is - listen to it.
RF> I think I've found one common thread that so ALMOST all Lupians go
RF> through. So often I read of people with the disease that had this
RF> period of intense frustration while awaiting a diagnoses.
Yep.
Take care.
Nadine
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/24/90)
Index Number: 9464
In a message to Nadine Thomas <17 Jul 90 21:10:00> Rusty Ferguson wrote:
RF> do walk when I feel like it, and had gotten back into it. But now
RF> for the first time in two weeks my skin burns again. But I do feel
RF> better but not great. Will I ever feel great again?
If you really take care of yourself why not? I know a woman who has had lupus over 20 years and she does pretty much everything she wants to BUT that is because she has and still does take care of herself and keep in fine tune with her body needs.
RF> have gotten behind in keeping up with tracking the finances, but
RF> they get paid via checkfree on automode. But reconciling the bank
RF> account seems to fall way behind now. Oh did I tell you I'm an
RF> accountant? >grin<
Ha.... my ex is/was an accountant - before we married and I took over the checking and statements, he used to throw the statements into a draw, unopened, and after about a year switch banks after approximating fees etc.
That was his way of balancing his check book.
RF> That I have a problem with, once I tell someone I'm going to do
RF> something I have a hard time backing down. Now I just don't make
RF> promises. I planned a board party not long ago that I did cancel at
RF> the last minute though. Just no way I could have done it.
Sounds like you are learning. I tell people (and stick to it) (when I am in a flare) that I am working on a day to day basis and I cannot make decisions about a certain day until it arrives and then I stillmay have tochange my decision.
RF> Yea, but now I'm in remission. How could something inactive go into
RF> remission? >grin< Like I said I had been feeling better, but not
RF> as well as I should. My friends have been saying my message seem to
RF> indicate that I'm getting back to normal. It appears I was not
RF> making a lot of sense in some of them a month or so ago.
I am concerned that you are so wanting a remission that youare gonna crash land if that is not what is happening.
Your confusion is normal -wanting it to not be and yet knowing SOMETHING is going on (and not wanting it to be).
Nadine
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/24/90)
Index Number: 9465
In a message to Nadine Thomas <17 Jul 90 21:53:00> Patricia Ferguson wrote:
PF> Do blood tests tend to be more accurate than urine tests?
When it comes to blood sugars ABSOLUTELY.
PF> I seem to remember reading where you have started going to support
PF> groups recently. How's that going?
Not been able to go. I talk with about 3 members on the phone once in a while.
PF> It is called Mainstay. I realize that possible "chronically ill"
PF> sounds a little harsh but the feelings that are being shared in this
PF> book are so familiar at times.
Lupus IS a chronic illness - it is not harsh, it just is. Maybe
you just need some time to get used to it and that's okay. I try to
not whitewash what is happening cause it is easier to deal with
facing the facts then to deal with cute labels and then having to
face the real stuff anyway.
PF> You have patience of gold! And a heart to match!
(BLUSH) Thank you.
Nadine
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgsommers@pilot.njin.net (Mamaliz @ The Soup Kitchen) (07/25/90)
Index Number: 9484 About Mainstay: I read the founder's book. I doubt that I would be real accepting if any of my family joined. A woman with a martyr complex, allowing her husband and children to get away with ANYTHING and then griping about it. lizzy -- lizzy sommers@njin.pilot.net
Nadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (07/27/90)
Index Number: 9565
In a message to All <20 Jul 90 20:10:00> Mamaliz wrote:
Ma> (I do not have Lupus. I have a chronic disease that often mimics Lupus,
Ma> and is also treated with steroids and handwaving).
Would you mind sharing the name and more information about it?
Ma> I am beginning to believe that rheumatologists are just around
Ma> to make work for psychiatrists.
From my experiences I think they are frightened people who don't
really know what to do and try to live up to our unrealistic
expectations of them (they can heal everyone - or if not everyone
at least ME, they have just the right magic pill, they are
infallible, etc.). A few are so caught up in their own
self-importance they have no handle on reality.
Ma> I have been sick for over 13 years now. We have a pretty good
handle Ma> on what is wrong with me and how to treat it.
Yep. Most of the time I don't even call the docs cause I know what they
are gonna tell me to do and so I just do it and tell them about it next
scheduled visit.
Ma> The new rheumatologist (highly
Ma> recommended) treated me like a hypochondriac.
Ma> He asked me if I was a professional sick
Ma> person. My roommate was with me,
Ma> he wanted her to confirm what I said. He asked me how I felt that being
Ma> sick had cost me my marriage (my husband really appreciated that one
Ma> when he got home). I have copies of all
Ma> the current research on my illness,
Ma> he asked me if I was treating myself. It was a nightmare of a doctor's
Ma> appointment. I came home screaching
Ma> and crying, and immedietly called my
Ma> old doctor (who knows nobody in VA) and asked what I should do. He said
Ma> I should find a new doctor immediately.
Glad you had someone with you to validate YOU. Many times I have
walked out of some docs office wondering if I had lost my mind.
Then I got smart and took people with me when I was going to a new
doc or something different came up. If during the visit things got
emotional for me I had someone to tell me what happened cause I
would not always remember what transpired. Had a doc once
(unfortunately only temporarily) who gave me articles to read about
what the other docs thought I had so I could be knowledgeable too.
He offered to go over anything I did not understand or had
questions about and said it was important that I had a part in my
care. He was the FIRST doc to not feel threatened by patients
being informed.
Ma> A week later the rheumatologist went to a convention and discovered that
Ma> everything I told him was accurate. He tried to get NIH interested in
Ma> me (the syndrome is too rare) and tried to find a doctor in the area who
Ma> knew about the syndrome. He came up with one plastic surgeon. He
Ma> called me up, apologized, gave me the
Ma> name of the plastic surgeon, changed
Ma> my prednisone dosage and asked for the medical literature on my case. I
Ma> will probably be seeing him again soon.
Takes a good doc to put aside the old EGO and admit being wrong. Please,
let me know how the next visit goes.
How much prednisone are you on and how long are you on it?
Ma> It can get better. I have stopped betting on it. Don't let them treat
Ma> you like a victim. TELL THEM YOU EXPECTED TO BE TREATED LIKE A HUMAN.
You got that right!!!
Thanks for sharing....
Nadine
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgsommers@pilot.njin.net (Mamaliz @ The Soup Kitchen) (08/09/90)
Index Number: 9609
Nadine asks:
Would you mind sharing the name and more information about it?
I have human adjuvant disease. It is a disease caused by doctors that
becomes an auto-immune disease. In other words they know what causes
it (in spades) but have no idea how to cure it. You CANNOT catch it
and doctors now know enough that there is little chance that it will
be inflicted on many more people (at least in the US).
lizzy
--
lizzy
sommers@njin.pilot.netNadine.Thomas@p59.f1.n360.z1.fidonet.org (Nadine Thomas) (08/10/90)
Index Number: 9686
In a message to Nadine Thomas <27 Jul 90 16:45:00> Rusty Ferguson wrote:
RF> Part of it is, why should I, I don't have any thing. Is that
RF> stupid? Yes it is. I am human though and sometimes don't react as
RF> I should. I've only really done that one time. The picnic without
RF> sunscreen for example. That would not happen again. One the other
RF> hand some things seem to much. I imagine this computer monitor
RF> gives of UV light. I can't see giving up computers and I would feel
RF> like a fool in a hat. Maybe I'm a bigger one for not doing so.
RF> I've done EVERYTHING else they have asked.
No, it is NOT stupid - it is normal. Part of what you are going
through is the grief cycle. Denial is one of the phases. I went
through it too - the more I hurt the more I denied the more I
played softball the more I hurt the more I denied - well, you get
the idea. When I was ready to stop denying then I was able to
break the cycle. When the pain becomes greater then the fear of
change you will do something about it. Seems you have choices
Rusty - you can feel the fool or you can feel better. You're doing
okay - back off - get off your own back.
RF> I do that every day in my head. I know I've got it good. Compared
RF> to most of the people in this echo I'm barely sick I'm well aware of
RF> that. I don't feel disabled (I just don't know what other word to
RF> use). Maybe I don't belong here. I may
RF> go to read only mode for a while.
No! You don't compare yourself to others - what you have is YOURS.
It is just as important as everyone elses. When you start
comparing you will get yourself in very deep do do. Yes, you do
belong here but if what you feel comfortable doing is just reading
for a while then honor that. When I talk about a gratitude list I
talk about things like your wife and kids, a roof over your head,
food on the table, etc.
Nadine
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!360!1.59!Nadine.Thomas
Internet: Nadine.Thomas@p59.f1.n360.z1.fidonet.orgJack.Colley@f122.n249.z1.fidonet.org (Jack Colley) (08/10/90)
Index Number: 9707
My suggestion for getting on with your life in spite of having a
disability, is to forget the disability, make the best of your abilities.
I have done this for a lifetime with a birth defect, and am having a
uuseful & productive life from a wheel chair. After 44 years work with
one employer, will retire next year on full pension. [not disability
pension] Am married with one child.
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!249!122!Jack.Colley
Internet: Jack.Colley@f122.n249.z1.fidonet.orgFloria.Antin@f304.n109.z1.fidonet.org (Floria Antin) (08/14/90)
Index Number: 9833 > Disabilities take many paths. Yours is a birth defect - may I assume > you are not in chronic pain? you do not have chronic fatigue (which > will get worse if limitations are not followed)? > get on with life. My limitations are clear and so are my abilities. > The funny part is that my pain does not allow me to forget one minute > that I have disabilities. I know your post was to someone else but it I agree, that disabilties take many paths and therefore there is no one way to provide. What is necessary, needed and wanted by some people with disabilities is often something that others cannot use. Transportation for instance, while regularly scheduled public tansportation that is accessible is necessary for many, there are those in the community who need paratransit, or door to door service. Even among people with disabilkities there are diferent strokes for different folks. It's time we stopped easuring a person by the paid job he/she has and realize that everyone is a complex human being functioning on many levels and monetary renumeration dors nit measure one's worth as a valuable, caring, human being. -- Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!109!304!Floria.Antin Internet: Floria.Antin@f304.n109.z1.fidonet.org
lee%smiley@gateway.mitre.org (Anabelle Lee) (06/14/91)
Index Number: 16035 I have a friend who was recently diagnosed as having "moderate Lupus". I know very little about the disease and would like some information. Is there someone who can give me a short summary of what it is, symptoms, prognosis, diagnosis, etc. I have MS so I do know about autoimmune diseases. Also, is there an organization that provides literature on the disease, current research trends, etc. The MS society, for example, provides excellent literature. All information will be appreciated!!!!! Annabelle Regards, - Annabelle Lee, phone: (703) 883-7105 The MITRE Corporation, 7525 Colshire Drive Mc Lean, VA 22102 Mail Stop Z268 e-mail address: lee%smiley@gateway.mitre.org