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Home > Archive > Lupus Support > October 2004 > Yes, I'm still alive!
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Yes, I'm still alive!
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| Michael Roeper 2004-10-23, 7:10 pm |
| It's been so long since I gave evryone an update. I got a little paranoid
when I realized that everything I post was archived for everyone to look up
later. One of those feak things I guess.
I've been on Prednisone for almost 2 years and Cytoxan (chemo) now for 6
months. There is some discussion that they want to send me to the University
of Colorado (at Denver). I guess that's the lung disease capital of the US
or something. They still don't know what causes the flare-ups in my lungs
but the last months have seen fewer flares that cause hospitalization (only
once this year so fay) so that's been a good thing. The Doc's admit that I'm
just an experiment and I'm sure they're trying the best they can. They're
now calling it a rare form of "vasculitis" where I actually (I think) bleed
into my lungs. This is scary as I take a lot of anti-coagulants for my
pulmonary embolism history. Scares me anyway.
I managed to re-do my yard this summer. All new lawns, sprinkler systems and
large brick planters. It turned out quite well, actually, but I;ve now ended
up with more lawn than I can really handle. It takes almost an hour to cut
the grass and it really wears me out. I bought a special backpack that I can
carry my oxygen cylinders with me when I cut the grass. I actually look like
a scuba diver out there on the front lawn, lol.
Still, other than that I mostly spend my time on the couch. I still struggle
with feeling totally useless because I'm not working. I don' think I've ever
really gotten used to the fact that I'm actually sick.
The puppy is doing fine. I don't know what I'd do without her. Someone to
talk to without getting a lot of arguement back! She was actually the reson
for the yard redesign. I needed more space for her to run around. Finishing
the fencing that the previouse owners had started now allows me to leave he
back door open and she can come and go as she pleases and I don't have to
worry about her safety.
So. Overall I'm doing prety good with the heslth stuff, kind of lonesome
without much to do and kind of scared about what comes next. I've been lucky
that I've had a pretty good income since this all began 3 years ago but whe
I got my Social Security disability in Fbruary (and Medicare at the same
time) I lost my state Medicaide and thus lost my prescription coverage (I
may have told you all about this before. My memory is quite shot.) Aas a
result I now get $1,200 a month SS but lost my prescription coverage which
was paying for about $4,000 in med's a month. So I;ve gotten involved woth
the Patients Assstance Programs (PAP) with the drug companies and, other
than a mess of paperwork, I'm getting most of my med's now for free.
Thank God for that.
So that's what's happin with me. I'll try and check in a bitmore often. I
lurk regularly but writing this stuff takes a lot of energy that most of the
time i don't have.
Cheers!
Michael Roeper
Portland, Oregon
| |
|
| Michael Roeper wrote:
> It's been so long since I gave evryone an update. I got a little paranoid
> when I realized that everything I post was archived for everyone to look up
> later. One of those feak things I guess.
>
> I've been on Prednisone for almost 2 years and Cytoxan (chemo) now for 6
> months. There is some discussion that they want to send me to the University
> of Colorado (at Denver). I guess that's the lung disease capital of the US
> or something. They still don't know what causes the flare-ups in my lungs
> but the last months have seen fewer flares that cause hospitalization (only
> once this year so fay) so that's been a good thing. The Doc's admit that I'm
> just an experiment and I'm sure they're trying the best they can. They're
> now calling it a rare form of "vasculitis" where I actually (I think) bleed
> into my lungs. This is scary as I take a lot of anti-coagulants for my
> pulmonary embolism history. Scares me anyway.
>
> I managed to re-do my yard this summer. All new lawns, sprinkler systems and
> large brick planters. It turned out quite well, actually, but I;ve now ended
> up with more lawn than I can really handle. It takes almost an hour to cut
> the grass and it really wears me out. I bought a special backpack that I can
> carry my oxygen cylinders with me when I cut the grass. I actually look like
> a scuba diver out there on the front lawn, lol.
>
> Still, other than that I mostly spend my time on the couch. I still struggle
> with feeling totally useless because I'm not working. I don' think I've ever
> really gotten used to the fact that I'm actually sick.
>
> The puppy is doing fine. I don't know what I'd do without her. Someone to
> talk to without getting a lot of arguement back! She was actually the reson
> for the yard redesign. I needed more space for her to run around. Finishing
> the fencing that the previouse owners had started now allows me to leave he
> back door open and she can come and go as she pleases and I don't have to
> worry about her safety.
>
> So. Overall I'm doing prety good with the heslth stuff, kind of lonesome
> without much to do and kind of scared about what comes next. I've been lucky
> that I've had a pretty good income since this all began 3 years ago but whe
> I got my Social Security disability in Fbruary (and Medicare at the same
> time) I lost my state Medicaide and thus lost my prescription coverage (I
> may have told you all about this before. My memory is quite shot.) Aas a
> result I now get $1,200 a month SS but lost my prescription coverage which
> was paying for about $4,000 in med's a month. So I;ve gotten involved woth
> the Patients Assstance Programs (PAP) with the drug companies and, other
> than a mess of paperwork, I'm getting most of my med's now for free.
Hello Michael,
I'm so glad to hear from you. I wondered how you were doing.
I'm sorry about how the meds worked out but pleased that you've found an
alternate way around it.
I've got twice as much lawn as house space and I discovered that it will still
be there the next day.
So I (mentally) have it in 7 area and I do the longest first and stop when I run
out of steam and do the rest another day.
Either way, winter is coming so you should have a bit of a break there.
Good to hear from you,
J
| |
|
| Hi Michael,
I just wanted to say that it was good to hear from you. I have been
wondering how you are doing. Stop by as often as you can.
BJ-Sk. Canada
"Michael Roeper" <roeper@comcast.net> wrote in message
news:A7yed.413882$mD.337670@attbi_s02...
> It's been so long since I gave evryone an update. I got a little paranoid
> when I realized that everything I post was archived for everyone to look
up
> later. One of those feak things I guess.
>
> I've been on Prednisone for almost 2 years and Cytoxan (chemo) now for 6
> months. There is some discussion that they want to send me to the
University
> of Colorado (at Denver). I guess that's the lung disease capital of the US
> or something. They still don't know what causes the flare-ups in my lungs
> but the last months have seen fewer flares that cause hospitalization
(only
> once this year so fay) so that's been a good thing. The Doc's admit that
I'm
> just an experiment and I'm sure they're trying the best they can. They're
> now calling it a rare form of "vasculitis" where I actually (I think)
bleed
> into my lungs. This is scary as I take a lot of anti-coagulants for my
> pulmonary embolism history. Scares me anyway.
>
> I managed to re-do my yard this summer. All new lawns, sprinkler systems
and
> large brick planters. It turned out quite well, actually, but I;ve now
ended
> up with more lawn than I can really handle. It takes almost an hour to cut
> the grass and it really wears me out. I bought a special backpack that I
can
> carry my oxygen cylinders with me when I cut the grass. I actually look
like
> a scuba diver out there on the front lawn, lol.
>
> Still, other than that I mostly spend my time on the couch. I still
struggle
> with feeling totally useless because I'm not working. I don' think I've
ever
> really gotten used to the fact that I'm actually sick.
>
> The puppy is doing fine. I don't know what I'd do without her. Someone to
> talk to without getting a lot of arguement back! She was actually the
reson
> for the yard redesign. I needed more space for her to run around.
Finishing
> the fencing that the previouse owners had started now allows me to leave
he
> back door open and she can come and go as she pleases and I don't have to
> worry about her safety.
>
> So. Overall I'm doing prety good with the heslth stuff, kind of lonesome
> without much to do and kind of scared about what comes next. I've been
lucky
> that I've had a pretty good income since this all began 3 years ago but
whe
> I got my Social Security disability in Fbruary (and Medicare at the same
> time) I lost my state Medicaide and thus lost my prescription coverage (I
> may have told you all about this before. My memory is quite shot.) Aas a
> result I now get $1,200 a month SS but lost my prescription coverage which
> was paying for about $4,000 in med's a month. So I;ve gotten involved woth
> the Patients Assstance Programs (PAP) with the drug companies and, other
> than a mess of paperwork, I'm getting most of my med's now for free.
>
> Thank God for that.
>
> So that's what's happin with me. I'll try and check in a bitmore often. I
> lurk regularly but writing this stuff takes a lot of energy that most of
the
> time i don't have.
>
> Cheers!
>
> Michael Roeper
> Portland, Oregon
>
>
| |
| Shelagh 2004-10-27, 7:11 pm |
| Hi Michael
Good to see you are finally ready for an update to the group.
I enjoyed your emails the past while; thanks so much for taking the time and
energy to write, I know you tire out easily, as do I!
Hope you will feel better soon and that your health takes a turn for the
better and that your energy and zest for life can be on an equal
footing..... glad you are able to enjoy your pup, she is probably a
wonderful friend at this point; beyond the needy puppy stage and yet still
playful and full of fun!
Sending you well wishes and hugs!
from Shelagh
"Michael Roeper" wrote in message
>It's been so long since I gave evryone an update. I got a little >paranoid
>when I realized that everything I post was archived for >everyone to look
>up later.
>One of those feak things I guess.
>I've been on Prednisone for almost 2 years and Cytoxan (chemo) >now for 6
>months. There is some discussion that they want to send >me to the
>University of Colorado (at Denver). I guess that's the >lung disease
>capital of the US or something. They still don't know >what causes the
>flare-ups in my lungs but the last months have seen >fewer flares that
>cause hospitalization (only once this year so fay) >so that's been a good
>thing.
>The Doc's admit that I'm just an experiment and I'm sure they're >trying
>the best they can. They're now calling it a rare form of >"vasculitis"
>where I actually (I think) bleed into my lungs. This is >scary as I take a
>lot of anti-coagulants for my pulmonary embolism >history. Scares me
>anyway. I managed to re-do my yard this >summer. All new lawns, sprinkler
>systems and large brick planters. >It turned out quite well, actually, but
>I;ve now ended up with more >lawn than I can really handle. It takes almost
>an hour to cut the >grass and it really wears me out. I bought a special
>backpack that I >can carry my oxygen cylinders with me when I cut the
>grass. I >actually look like a scuba diver out there on the front lawn,
>lol. Still, >other than that I mostly spend my time on the couch. I still
>?>struggle with feeling totally useless because I'm not working. I don'
>The puppy is doing fine. I don't know what I'd do without her. >Someone to
>talk to without getting a lot of arguement back! She >was actually the
>reason for the yard redesign. I needed more space >for her to run around.
>Finishing the fencing that the previouse owners had started now >allows me
>to leave the back door open and she can come and go >as she pleases and I
>don't have to worry about her safety.
>So. Overall I'm doing prety good with the heslth stuff, kind of >lonesome
>without much to do and kind of scared about what >comes next. I've been
>lucky that I've had a pretty good income >since this all began 3 years ago
>but when I got my Social Security >disability in Fbruary (and Medicare at
>the same time) I lost my >state Medicaide and thus lost my prescription
>coverage (I may >have told you all about this before. My memory is quite
>shot.)
>As a result I now get $1,200 a month SS but lost my prescription >coverage
>which was paying for about $4,000 in med's a month.
>So I;ve gotten involved woth the Patients Assstance Programs >(PAP) with
>the drug companies and, other than a mess of >paperwork, I'm getting most
>of my med's now for free.
>Thank God for that.
>So that's what's happin with me. I'll try and check in a bitmore >often. I
>lurk regularly but writing this stuff takes a lot of energy that >most of
>the time i don't have.
>Cheers!
>Michael Roeper
>Portland, Oregon
| |
|
| Hi Michael,
I do not know you and you do not know me so thought I would trim the fuzz by
saying hello.
Hello.
Well, it is nice to be an experiment as that beats being the lab mouse, i
think.
Yep, that is a bummer getting the disability from having the medicaid
coverage. I have heard a lot of people who did not know about the Patient's
Assistance Program so nice to hear you are getting a better price now on
your scripts - free is good. : )
I am on Methotrexate for the Lupus. I actually have what is called, Mixed
Connective Tissue Disease though which is generally an overlap of Lupus,
Scleroderma and Polymyositis. Sometimes RA also. My main issue is Lupus
and RA but I have a vast collection of autoimmune diseases at this point.
I do not take Prednisone except for burst doses. Pred has done enough damage
to me as it stands. Diverticulosis and Osteoporosis to name a couple. This
was just from my taking burst doses. Can understand why they have you on it
for the embolism. I had a scare over a year or two ago and had the most
severe pain in my leg. They eventually tested me for DVT but that was 6
hours after the worst was wearing off. Maybe it moved on with no problem...
who knows. Worries me too. Especially because around 3 weeks ago, the pain
began to return. I took a couple muscle relaxants and went to bed.
Fortunately, has not been back since. Felt like Freddy Kruger eatting my
thigh bone from the inside out.
But like you, I still manage to do quite a bit. Am slow as all heck and
often am distracted from doing projects, but oh well.
I just started on the oxygen at night... night only. Am on the machine that
makes oxygen. I have not joined the big leagues of toting the tanks. Good
idea about the back pack though.
I have a friend who has vasculitis... she has been doing the IV prednisone
as it has got quite bad this past year. I have heard about the rare lung
form and sorry to hear you are having troubles with this.
I had someone give me a Jack Russell Terror when I was very sick. Dogs are
amazing creatures. What kind of dog owns you? Mine has helped me through a
couple rough times.
How young are you anyways? Have heard that often times the males cases of
Lupus are not as severe. Guess you are trying to make a liar out of the
medical community. How long has it been that you were diagnosed?
I do a lot of gardening stuff to... especially when the Florida sun becomes
less challanging.
Oh well, my rheumy appt is today so guess I better getting cracking!
Hope this finds you pain free and having a super happy day!
Always,
cloud
"Michael Roeper" <roeper@comcast.net> wrote in message
news:A7yed.413882$mD.337670@attbi_s02...
> It's been so long since I gave evryone an update. I got a little paranoid
> when I realized that everything I post was archived for everyone to look
> up
> later. One of those feak things I guess.
>
<snipped for brevity>
| |
|
| Hi cloud,
<snip>
I had someone give me a Jack Russell Terror when I was very sick.
<snip>
I bet your buddy is pretty good most times. Must have been a bad boy when
you wrote this though. Funny!!!!
Dawn
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