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Medical Forum / Diseases and Disorders / Lupus / May 2004

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"Flaring again...."

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Michael Roeper - 10 May 2004 12:50 GMT
I hope today find's "Lupies" everywhere better than the day before! It feels
like a hard road some days. I'm afraid I'm not quite over the last flair
that put me in ICU for 4 days, the hospital fo 8 and I'm already having
another one. It started Friday night and I'm definately there again.

Sharon is on me to go to the hospital again but I hate going there (they
tend to keep me....). My oxygen saturations levels are real bad again and my
legs are so swollen holding water that I can hardley walk. Has anyone ever
held so much fluid that they could push their finger into their stomach and
have it leave an indentation? Man, I've never seen it like this. I'm eating
those little water pills like candy but I can' see where whey're doin much
good. But then, I might be a real mess without them too. The swelling is
making by legs numb.

I'm seeing the Rheum. specialist this afternoon, the 1st of the "second
opinion" Doc's that we lined up months ago. I figure he can tell me if I
need to go to the hospital.....

I'm really getting tired of this folks and am having a real hard time being
positive and upbeat. I'm discouraged as these past 3 flares have been so bad
compared to previous episodes. My lungs are full of fluid and I'm coughing
without any relief.

Wow. This is pretty gross stuff, Huh?

I was readying that post of Lee-Thompson (My dad's name was Lee
Thompson.....long story) about going thru Euorpe! Man, I'd give anything to
do that! I've given serious thought to riding the Orient Epress before I
kick the bucket some day. It's Paris to Istanbul in 5 days and costs around
$6,000 (if I remember correctly). That doesn't included any of the expenses
to Paris and back (to Portland,Oregon) though. I even bought a video on eBay
of the trip. It was a lot of eating (I like that part!!) and a lot of
drinking (that part I don't do). Still , it looked like great fun. I don't
know how I could do something like that with needing oxygen 24/7 tho...

I rode the Rocky Mountaineer train from Calgary, Alberta to Vancouver, BC in
Canada a 3 or 4 years ago for a newspaper article I was writing. It was a
2-day trip in the dead of winter and I loved every minute of it. Made some
great new friends too but I wasn't sick then and being sick makes travel a
nightmare. It's the oxygen thing that messes it up for me.

I just went up to visit my uncle for 3 days and I had to take 18 cylinders
of air PLUS my concentrator too. With all that, Mugsey and the luggage we
were full, then the car broke down on the way home and my son had to come
and get me. Everything went wrong on that trip that could have gone wrong, I
guess but I was sure glad I went.

I wanted to finish the Orient Express trip  with a few weeks in India (I've
always wanted to go there too). I can afford the travel but I guess it's no
longer practical for me to go those kind of distances anymore.

Anyway, wish me luck at the doctors today. It's at the Medical School and I
don't know the tunnels and caticombs around there as well as I do at the
other hospital's. I'm taking the scooter and a good book to read as the
school always have a pretty long wait that goes along with it. Mayvbe I can
start finding the tunnel system there.There's no way I could walk that
campus today so I have to take the scooter. I jsut hope I can find a
handicapped parking space that's not miles and miles away. I actually have
to take my records up ther this morning then go back at 1:30 for my
appointment.

See you all later!

Michael
Shelagh - 10 May 2004 20:23 GMT
Good luck Michael!
I wish you well with your 2nd opinion today and really hope that
you can treat yourself at home with this flare up and fluid
retention... but if the doc say you should be in hospital for it
do go okay? Sometimes the best meds are by IV and they can clear
up things 10x better than oral meds so it would be worth the week
or so in hospital to get you back to feeling good and back to
your 'support group' and family here... can you post while in
hospital?
Anyhow I am sending you well wishes for all that!
I too would love to do some travelling before kicking the bucket
but for me it is highly unlikely just because flying alone sets
off a flare .... I don't know why as I don't have a fear of it so
there isn't any 'stress' that I am aware of but I always get sick
after a flight and stay that way for a few days.... even visiting
my daughter involves an initial flare up... such a pain in the
*ss is our illness... wouldn't it be nice to just be free of it
for one good holiday somewhere special.... I would settle for a
week away pain free and energy to burn !!
LOL! wishful thinking or what.... but what would we have if not
for our dreams?
Good luck Michael and be sure to update us on your progress with
this new flare!
Hugs from Shelagh

"Michael Roeper"  wrote in message
> I hope today find's "Lupies" everywhere better than the day
before! >It feels like a hard road some days. I'm afraid I'm not
quite over the last >flair that put me in ICU for 4 days, the
hospital fo 8 and I'm already having
> another one. It started Friday night and I'm definately there again.
> Sharon is on me to go to the hospital again but I hate going there (they
> tend to keep me....). My oxygen saturations levels are real bad
again and my legs are so swollen holding water that I can hardley
walk. Has >anyone ever held so much fluid that they could push
their finger into their stomach and have it leave an indentation?
Man, I've never seen it like this. I'm eating
> those little water pills like candy but I can' see where whey're doin much
> good. But then, I might be a real mess without them too. The swelling is
[quoted text clipped - 12 lines]
> kick the bucket some day. It's Paris to Istanbul in 5 days and costs around
> $6,000 (if I remember correctly). That doesn't included any of
the >expenses to Paris and back (to Portland,Oregon) though. I
even bought a video on eBay
> of the trip. It was a lot of eating (I like that part!!) and a lot of
> drinking (that part I don't do). Still , it looked like great fun. I don't
> know how I could do something like that with needing oxygen 24/7 tho...
> I rode the Rocky Mountaineer train from Calgary, Alberta to
Vancouver, BC >in Canada a 3 or 4 years ago for a newspaper
article I was writing. It was >a  2-day trip in the dead of
winter and I loved every minute of it. Made some
> great new friends too but I wasn't sick then and being sick makes travel a
> nightmare. It's the oxygen thing that messes it up for me.
> I just went up to visit my uncle for 3 days and I had to take 18 cylinders
> of air PLUS my concentrator too. With all that, Mugsey and the luggage we
> were full, then the car broke down on the way home and my son had to come
> and get me. Everything went wrong on that trip that could have
gone wrong, I guess but I was sure glad I went. I wanted to
finish the Orient >Express trip  with a few weeks in India (I've
always wanted to go there too). I can afford the travel but I
guess >it's no longer practical for me to go those kind of
distances anymore.
> Anyway, wish me luck at the doctors today. It's at the Medical School and I
> don't know the tunnels and caticombs around there as well as I
do >at the other hospital's. I'm taking the scooter and a good
book to read as the
> school always have a pretty long wait that goes along with it. Mayvbe I can
> start finding the tunnel system there.There's no way I could walk that
[quoted text clipped - 4 lines]
> See you all later!
> Michael
Lee Thompson-Herbert - 11 May 2004 01:02 GMT
>I too would love to do some travelling before kicking the bucket
>but for me it is highly unlikely just because flying alone sets
[quoted text clipped - 5 lines]
>for one good holiday somewhere special.... I would settle for a
>week away pain free and energy to burn !!

Travelling is just plain stressful.  Remember, I essentially cheated by
getting pumped up on prednisone before I left and keeping the dose high
the whole trip.  Not everyone's doctor would allow that.  And I've been
relatively stable for the last year or so since I've been on Enbrel, or
I would not have been okay to go either.  I treated this trip as potentially
my one and only chance to go to Europe and badgered the hell out of my doctors
to get all my symptoms at least managed before I left.  Next week is the round
of "I told you so" appointments where they get to see how much damage I did
myself on the trip. ;}

I'd love to go to Sidmouth, the really big festival, next year but there
are no guarantees at all.  What I have done is proven that I _can_ manage
such a trip without putting myself in the hospital afterwards.  But there's
no telling what will happen in the next year.  If I end up in a powerchair
between now and then because my shoulder has gone, that'll almost certainly
nix any chance of going.  Or if I have one of those downhill slides that come
at unpredictable times.  So I grabbed my one chance and took it.

I hope the rest of you manage to get that fortuitous combination of timing,
money, and just plain good luck at least once as well.

Signature

Lee M.Thompson-Herbert        lee@retro.com         KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

Michael Roeper - 11 May 2004 04:34 GMT
Now yuu have me really thinking. I have a new "power chair." It' a scooter,
really but is convertable to the shorter power chair just by replacing the
front end. I wouyld think travel would be much easier with some kind of
"power" set-up but you sound like it wouldn't be. I'm able, by the way, to
still walk around and load and unload the scooter from my van using a Bruno
crane designed for that purpose that I bought.

I would think the power chairs and scooters would be ideal for travel
anyway???

Michael Roeper
Poertland, Oregon
Lee Thompson-Herbert - 11 May 2004 08:40 GMT
>Now yuu have me really thinking. I have a new "power chair." It' a scooter,
>really but is convertable to the shorter power chair just by replacing the
[quoted text clipped - 5 lines]
>I would think the power chairs and scooters would be ideal for travel
>anyway???

Not the places I went.  Remember, I took my 20-pound, folding, ultralight
manual wheelchair.  There were places we could not get into without folding
the wheelchair up to get it inside, either because of narrow doorways or
hallways.  We also encountered an awful lot of places where there were no
ramps, only steps.  With a 20-pound chair, you can get someone to lift it
up the 4-5 steps into a building.  Not gonna happen with a 100-pound or more
powered scooter or a 300 pound powerchair (most powerchairs have a lot more
electronics and beefier motors and batteries, as well as different seating).
And trying to get a non-folding wheelchair into a taxi cab is...interesting.

And keep in mind that even in the US, a lot of places don't have curbcuts
at intersections.  That's gotta suck in a powerchair where you can't just
wheelie your way over the curb.  Some powerchairs aren't particularly stable
and you risk toppling over if you try and ride over a curb.  If you don't just
manage to high-center yourself and get stuck like some hapless four-wheeler. ;}
With my custom-built titanium chair, I was able to bounce over curbs if I
really had to (at least if they weren't too high), and because I was travelling
with a group of people we could always have me hobble up a couple steps while
someone lifted the chair up for me.  You'd need a portable ramp and a pit crew
to do that with a powerchair.

The majority of powerchairs I saw in England were folding chairs with power
add-ons, probably because so very few buildings are truly accessable and
the train system is only about halfway there.  There are 5 or 6 different
train companies, and each of their trains have different dimensions and
configurations.  The Virgin turbotrains were really the only ones I could
just roll up onto and into my assigned spot.  The rest all had significant
problems of one sort or another.

I'm not even supposed to be lifting my featherweight chair right now, so
someone else has to load it into the car for me.  When we priced out the
Bruno lift for my car, it'd cost something like $1000 with installation,
which I can't afford right now.  Might have to do it *anyway* at this rate,
but insurance doesn't cover any of this stuff.  Didn't cover the wheelchair
either, since I can still hobble around some.  However, if I end up needing
shoulder surgery, that'll probably push me over the edge to being disabled
"enough" to qualify for coverage for a powerchair.  Then I'd only have to
pay for the new vehicle and modifications to it (groan).  

Luckily, we're only going to have to do very, very minor modifications
to the new house.  One threshold runner inside the house between tile and
wooden floors, a bannister on the front porch, and a ramp.  The rest is
already good, which is why we wanted *this* house.  When we looked at houses,
I made sure to take the wheelchair and see if I could actually get from room
to room.  And (gasp) I can even get into the bathroom in this place.  At least
the one in the master bedroom.  The extra bath has a door that's a little too
narrow, but that can eventually be fixed.  We've established that I _can_ get
the walker in there, so it's still an improvement over our current hovel,
where the only support I can use in the bathroom is my cane (wanna take any
guesses why I've fallen so many times in there?).

If you really want to seriously consider the pros and cons of travelling
with a wheelchair, you might want to start snurfling around at the
Wheelchair Junkies site and discussion boards.  You might like reading there
anyway, now that you have a new ride.  Among other things, the folks there
come up with some pretty clever ideas on how to deal with day to day life
in a wheelchair.  I found the place when I first started doing serious
research on buying a custom-built wheelchair to replace the loaner I'd been
using.  The guy who runs the site works for Pride/Jazzy and is a gimp himself,
so he knows his stuff.  And everybody should check out the Idiot Zone just
for the humor value.  He demonstrates photographically all the things one
specifically should NEVER EVER do in a powerchair.
http://www.wheelchairjunkie.com/

Signature

Lee M.Thompson-Herbert        lee@retro.com         KoX 1995, SP4
Head Muso, White Rats Morris, Faultline Morris
See my CafePress Shops: http://www.retro.com/employees/lee/CafePress.html
"A head-on collision between Morticia Adams and Martha Stewart"

BJ - 11 May 2004 16:25 GMT
Hi Michael,
I am a little late on this one, but I do wish you luck. I hope you bounce
back quickly from this one. Gad, you have been sick so often. I want you to
be well.
BJ-Sk. Canada
> I hope today find's "Lupies" everywhere better than the day before! It feels
> like a hard road some days. I'm afraid I'm not quite over the last flair
[quoted text clipped - 60 lines]
>
> Michael
Shytownkat03 - 24 May 2004 05:34 GMT
Hi Michael,

My name is Tori. I'd just like to say that I totally understand. I was
diagnosed with lupus 1 yr ago and it took them about 2 yrs. to figure it out.
Well this past year it seems as though I have lived in the hopsital. I started
swelling so bad it was rediculous. I'd press my legs and they'd stay in. when I
wore shoes, it was like meat was just sitting on the top of them. It had gotten
so bad that my face would swell. I tried to sleep on my back so my face would
look even worse, but that didn't even matter because when I got up my face was
so swollen I could barely see. My room mate asked me all the time if I was ok
and people in my classes just stared at me. I hated that. Well after that went
on and got worse, I had 3 seizures back to back right before thanksgiving.  I
was in ICU for 4 days and hospital for 8. 3 of the 4 days of ICU I was in and
out of consiousness. I dont remember a single thing that happened those 3 days.
When I was in the hospital they gave me so much medicinea and shots everyday, I
blew up like a blimp. When I got out these deep insision like scars on my arms,
legs, and stomach. The doctor said they were a type of stretch marks, but they
look like burns. Now I cant wear short sleeves or shorts. Im so depressed and
it upsets my boyfriend, because I dont do any of the things I use to do and I
dont act the way I use to act. I'm just so self conscience now. I almost hate
looking in the mirror. Now I dont want to take showers together, undress, or
anything in front of him.He's starting to understand, but he's like if he
doesnt care I shouldn't. But I do and I can't help it. Before I started all the
treatments and meds, I was a size 10, now I'm n plus sizes and was in them only
a month or so after I started them. Its amazing how drastic your life can
change in a couple of months. Well it was nice responding to you. Tori
Maggie - 24 May 2004 22:34 GMT
Hi Tori!

I wanted to welcome you to ASL.  You've really had a lot to deal with &
your feelings are so very valid.  I hope you will stick around, read &
post...get it all out & feel better about yourself.  Your disease is not
you, but it can often seem like it.  

Did you see what Shelagh posted?  I am copying it to this post for you
because it's so true & although you may not feel it right now, hope will
come back to your life.  And the odd thing is that you will recognize it
sooner than you ever have in your life & you will cherish it more than
you ever thought possible.  

Find your support system & then just let yourself lean, Tori.  I hope to
see more posts from you & also want to say welcome from "our welcomer,"
BJ.  She's on vacation, but she would want to welcome you, I know.

aHug4u,
Maggie

>>>>>>Compliments of Shelagh:<<<<<<

"LUPUS is actually quite limited!

It cannot cripple LOVE,
It cannot shatter HOPE,
It cannot corrode FAITH,
It cannot destroy PEACE,
It cannot kill FRIENDSHIPS,
It cannot suppress MEMORIES,
It cannot silence COURAGE,
It cannot invade the SOUL,
It cannot conquer the SPIRIT!
So what is left ??
.. nothing that matters!"
Shelagh - 25 May 2004 18:28 GMT
Hey Maggie:
Did you check out the BB5 site yet?
Starts up Tuesday July 6, and running Tues, Thurs and Sat
eve.s..... for the summer. My summer addiction<g> as I can't go
out in the sun I tune into the web cams off and on every day for
the duration.... are you planning on watching again this year?
......... Shelagh
BTW thanks for remembering my post! I wondered if anyone had read
it... for me it is a must to remember it all in order to stay
positive... too da** many probs with lupus can get me down, if I
'let' them! I refuse, when I am strong anyhow <g>!
"Maggie" wrote in message
> >>>>>>Compliments of Shelagh:<<<<<<
>
[quoted text clipped - 11 lines]
> So what is left ??
> .. nothing that matters!"
Maggie - 25 May 2004 19:13 GMT
Hi Shelagh!

Oh, girl..I don't think I can take BB5. LOL! Survivor about did me in &
I wasn't gonna watch that one, but then they did the All-Star cast & how
could I not watch that? I'll let ya know though....it'll just depend
upon other stress factor's, I guess. lol!  I may take to fishin' with my
Catalpa worms & forget TV altogether. : )   Maggie
Beverley - 25 May 2004 04:13 GMT
Hi Tori and welcome.
Yes. it really shatters you to be that sick so fast and then to realize you
are not what you were a few months before. For starters some meds can make
you blow up like a balloon - prednisone is famous for having that effect. I
wish I could tell you that the way you look doesn't matter because all so
often it does. Even if it is just how you perceive yourself. Just remember
it's what is inside you that counts. The rest is just packaging. Just try to
remember that this will probably pass. Those red lines will vanish and the
weight will go away.

If your boyfriend cannot accept you and what is happening then get rid of
him. Better to find out now than later. Many a woman on this group can tell
you the stories of trying to live with this disease and having a husband who
did not understand or couldn't accept the problems.
(((hugs)))
Bev

> Hi Michael,
>
[quoted text clipped - 22 lines]
> a month or so after I started them. Its amazing how drastic your life can
> change in a couple of months. Well it was nice responding to you. Tori
 
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