Well yall, things have been going pretty good for me I guess. Unless you
consider the medical stuff that's going on then it would be hard to see the
good in it all unless you looked at it a little differently.

I've (finally) hired a combo housekeeper/gardener/personal assistant this
past week. Will work about 16 hours a week, I think. That way I can discard,
for at least a while, the idea of moving out of my neat house (that I
really, really like) and into that condo I was thinking about. I was feeling
so bad that things weren't getting done and had visions of the place "going
to weeds.' Now I can rest a little easier. My medical condition has worsened
quite a bit in just the past 6 to 8 weeks. Now I can go back to having a
little fun with life and leave some of the driving to someone else for a
change.

The new, old VW bus (I don't remember if the group heard abouth this fiasco
yet) is now up and running like a top (well, an occassionally wobbly top). I
bought it cause I ALWAYS WANTED A VW BUS. Well, now I got one! A 1972 model
that's really in pretty good condition overall. I'll post a picture of the
bus, as well as some others too now that I  have a new digital cam (that's
REALLY NEAT!!!) If someone gives me the picture site address and paswords
(again) that is. I keep forgeting them! Anyway, I had a bunch of work done
on the bus then finally took that little vacation up to my Uncle's in
Wenatchee, Washington, I hadn't been up there in a year and a half and just
really wanted to go and see if I could stand the trip (I couldn't). It's 400
miles each way and I guess I can't take the drive any more. The van broke
down halfway home and I had to call my son to come get me, Mugsey, 20 oxygen
cylinders, blah, blah, blah.

Still, I had a real good visit. They love me so much up there and the whole
town (well, at least 10  or 11 of them) roll out the red carpet for me and
treat me like a king. Felt good even though I pretty muich slept the whole
time I was there I was so eshausted. In the future I'm just going to have to
take the train or fly and I'll have a much better time of it, I think. But
the bus is fixed now and I' having a great time driving it.

I FINALLY got my Social Security disability approved and should start
getting my benefiits this summer. Including the retroactive dough that will
help a lot with my future security. It's going to be thousands of dollars
and, so far anyway, I've  managed to posture myself so that I don't have to
spend any of it when it finally does arrive. Just tuk it aside for a rainy
day (although it does rain a lot here in Oregon.....).

I will upgrade my furnace, insulation, water heater and also install central
air conditioning when I do finally get the dough because I can see a 3 year
payback, especially with all the manufacturer rebates and tax credits that
will come with it. I don't have air cond. here and, with all the Prednisone,
I sure could use it. I will but all the components on eBay for about 40
cents on teh dollar and a friend of mine is qualified to install all of it
so I'll save a ton of money and feed mu eBay addiction at the same time!
Doesn't get any bette than that!!

I'm now in the middle of the biggest flare of my Lupus since the begining of
time. Spent 4 days in intensive care last week then 4 or 5 days, I think, up
on the "hack-n-cough" ward (they put all the pulmonary stuff in the same
wing.) Coughing up blood and running really low oxygen sats. These "flares"
used to run 3 or 4 days then sorta be over but this one is going on 2 weeks
now. They usually put me on 5 liters per minute (LPM) of 02 and up my
"liquid Prednisone" Solumedral (sp) up to about 80 mgs/day IV. This time I
was on this new technology that pumped 30 LPM of oxygen into me and they had
the Solumedral up to ove 240mgs/day. I am now out of the hospital and am
back on 80 mg Pred. and that chemo drug "Cytoxan" which they had been
talking about for 2 months. The Cytoxan is so scarry with it's side effects
and they had been waiting for some second opinions but this flare was so
serious that they didn't want to wait. I'm now on 5 to 6 LPM of oxygen all
the time whereas I was usually on about 2 LPM before this flare. They don't
know if I'll get back to that 2 LPM level again or not. Not a lot is known
about lung involvement with Lupus. They're still playing around with my
diagnosis again, wanting to call it some form of Vasculitis now instead of
Lupus. They are prety honest about saying that what's wrong with me is so
complicated and "rare" that they really don't know how to treat it. At least
they stayed with the Lupus diagnosis long enough for the SS disability to go
through.

(Grace, it sounds like you're having some lung stuff too. Man, if we could
hug it away you'd be squeezed absolutely flat by us all, I'm sure. You've
been through so much I don't know how you do it but somehow you sure do. I
try and remember how lucky I am when I think of all that you've been
through. I don't recall you ever being the sniveling, whiner that I am most
of the time! A night does not go by without me thinking of you and without
your being in my prayers!)

Does/has anyone else taken Cytoxan and has nausea been a part of it? Will I
lose weight too? They can bring the Pred. dose down pretty fast with the
Cytoxan which is what they are doing now. I'll be at 10 mg Pred within the
next 2 to 3 weeks and really hope to lose some weight. I've become absolutly
huge, gaining over 20 lbs alone in the past 2 weeks. I'm now up to over 260
LBS!! My weight before Pred was 190 so you can see where I'd like to get a
little "thinner." Right now I'm eperiencing a lot of bruising too and, for
the first time in months, holding a huge about of water in my feet and legs.
It actually looks like someone had been beating on the tops of my feet with
a hammer they're so bruised up!

That's enough of the ugly stuff, OK?

I'm so lucky that so many other things are going  my way ast the same time
this other stuff is happening. I've been real fortunate that I haven't had
to worry about money and/or insurance stuff to although I'm now getting
ready to go on medicare. Having my wife dump me when I got sick turned out
to be the best thing that ever happened to me. Can you imagine being "cared
for" by someone that shallow when things get going a little tough? I've
become pretty self reliant and I have both my grown sons Dennis (30)and Ryan
(27) who I've become a lot closer to as well as their mother (1st ex-wife)
who goes to my Doctor appointments with me and does the internet research
when they come up with something new. My brain has become absolutely dead
when it comes to remembering things so I've got her to kep me up-to-date.
There are times that I actually call her up several times in the same week
asking what th Doctor said about something, over and over again. She's real
patient with me. She's also taught me to ask her about things before I get
upset or angry about thing and let my "Prednisone mouth" get me into
trouble. The neighbor has been parking his car a certain way out front
(we're in a cul-de-sac with limited parking) and it's been really making me
angry. Instead of telling him what to do with his car I went to Sharon and
asked, "is it reasonable that I be so mad about this neighbors new parking
habits." She said no, it was the "Prednisone  talking" anf to just ignore
the whole thing. Whew. I could have gotten in a lot of trouble over that!

So life is going pretty good if you hang out with the right folks, people
that want nothing but the best for you and are willing to tolerate the fact
that you're sick and need a little extra TLC. And, with my "little family,"
I'm sure getting a lot of it. I know that makes me really, really lucky and
I count my blessings every day for them being in my life. They drive me nuts
(the oldest boy makes me homicidal just about all the time) but I'm sure
glad he's there.

Not much else to tell. I'm actually trying to get a bit more involved in the
NG again after being away for a while. I've been really, really overdoing
things physically and therre's a movement underfoot to try and get me to
slow down some. Getting  back "re-involved" here might help me do just that.

Thanks everyone for still being here. I do hope that you are all doing well
and that I'm wlecome back. I'll try and be a better group member. I can't
keep up the pace anymore and need to stop and keep up with some old friends
here!

Sorry this is so long. Maybe if I post a little more often you won't have to
wade through so much of my "crap" to find out what's going on with Michael!!

Blessings all around!

Michael