First post - You might want to refill your coffee
John
I have been reading ( lurking sounds too sinister for my taste ) this
group for some time now, and I now feel that I am ready to tell everyone my
story. It is mostly because of the replies that Wes got to his message
about his kidneys. After I read them I knew for sure that everyone here is
pulling for everyone else, and who better to tell the story to, than people
that are going through the same thing. I must warn everyone up front that I
have been known to rant, and offer opinions in terms that would best be
described as blunt, so maybe everyone should buy some ear plugs before they
read this post. LOL.
A little background:
My name is John ( I omitted my last name purely for privacy issues. You
never know who is reading newsgroups) I am a 35 yr. old WM. I am 6' 5",
and depending on what stage of a flare I am in, between 230 and 290 lbs. I
live in ( are ya ready for this? ) Utopia, Ontario. It is about 85 Km.
north of Toronto. I was diagnosed w/SLE in July of this year, after a 4 yr.
on and off game of hide and seek, with " The Patient One" I prefer to think
of SLE that way, as it forces me to be more patient with everything in my
life. I feel that if I can be more patient than the Lupus then, I will win
this game in the end. In Oct. ( after many months of waiting for a biopsy,
more on OHIP in future posts) I was diagnosed w/ Stage 2 Class V Membranous
Glomerulonephritis. I have run the gamut of symptoms over the years, except
surprisingly, no facial rash. The only other one that I haven't experienced
is CNS involvement, and I can't say that for sure, because of the peripheral
neuropathy that I still experience. So, you name it I've pretty much
experienced it too. The meds I am on are as follows: 50mg prednisone, 200
mg Acebutolol, 12.5mg Warfarin, 60mg Celexa ( 3rd gen.SSRI ), 30 mg
Amyltriptylene ( 2nd gen. SSRI ) 15 mg. Temazepam, 2mg Lorazepam, and as
much marijuana as required to get me to sleep. As you can see I am taking
quite a few meds to counter the Prednisone.
A pleasant interlude, before the storm of self pity:
Now being Canadian and all, I must ( apparently this is a requirement of
being Canadian ) start off by talking about ( NO, I DO NOT PRONOUNCE IT
ABOOT ) the weather. We got 15 cm. ( 6 in.) of snow last night, the kind
that is wet and sticky, so all the trees are covered in snow right now.
It's really quite beautiful, just like you would see in a stereotypical
picture of winter. It's a wonderful way to start off the morning. Looking
out the window and sipping my coffee ( I know, I know caffeine leeches
calcium, but I'm not giving up everything, besides decaf is worse for you,
http://www.arthritis.ca/ click on the post about the Lupus antibody
research, it's on that page ) is a terrific way to start the day!
The chronology of a STORM:
4 years ago ( in March ) I started to have intense abdominal pain every
time I ate. Along with that came constipation the likes of which I have
never experienced before, or since. Eventually the only thing that I could
eat consistently was rice. At the same time the lymphnodes in my neck
enlarged, to the point where everyone thought I was a football player. I
went to my family doctor, and the chase began. Abdominal ultrasound showed
enlarged lymphnodes, off to the hospital for abdominal CT scan. The results
were confirmed, enlarged nodes throughout my abdomen. That coupled with the
nodes in my neck, and by this time edema in my legs, we decide to do a
lymphnode biopsy ( left neck ). After waiting for 4 weeks for the
procedure, we finally get it done, and the results are caseating granulomas
in the nodes. Time to freak out! As near as everyone can tell GP,
Internal Med guy, ENT surgeon, the only things that cause this are:
AIDS,Cancer and TB. PANIC,PANIC!! So, we start to rule them out one by
one. AIDS screen: Neg. Bone marrow aspirate ( not recommended ) for
Lymphoma: Neg. TB skin test: Neg. During all of this time I have been
consistently losing about 5 lbs. a week. My girlfriend of 9 yrs. is looking
at the bright side "You look great!". I have to admit I was kind of happy
about shedding some weight, but I can think of infinitely better ways of
doing it! So, now it is July and my Internal Med. doc is convinced that I
have TB so, we start on the TB regimen ( extremely not recommended ). Those
meds are absolutely the worst combo I have ever had the misfortune of
experiencing ( and ungodly expensive too). They made me feel so bad that I
had do discontinue ( AMA ) them after about 3 weeks. I couldn't believe
that I could feel worse than I had previously. It is decided to do another
lymphnode biopsy, but curiously the nodes in my neck have been reducing, so,
we have to get some from my groin ( YIKES ). While waiting for the
procedure, I have stopped losing weight, and I am able to eat a more varied
diet ( there are only so many ways you can cook rice ) with less discomfort.
Excellent, things are looking up! Results of the biopsy show the same
general inflammation, with caseating granulomas. Not so excellent, but I am
starting to feel better all the time. It is now late August, and I am
getting tired of being poked and prodded, so that coupled with the fact that
I really am starting to feel better, I decide ( notice, not we ) to stop
seeing any more doctors, and see how it plays out. Apparently I am
superhuman, I am fixing myself! It's October now and it's my birthday so, I
take a huge chance and order a 32oz. steak at my favourite ( real English
sp. LOL ) restaurant. I have been waiting for this since about April! Ah,
bliss! It's a giant love fest! My girlfriend loves me, I love me, even the
dog loves me ( even if it is only because the bone from my steak was so
big )! We're off to the races, whatever it was, I beat it! I am
indestructible!
Next March:
Why are my fingers turning white?! Oh, oh, the abdominal pain is coming
back! Here we go again. Armed with the newly discovered knowledge that,
yes indeed, I am indestructible, I decide to do nothing. BRILLIANT PLAN!!
Just like the year before, all the symptoms present themselves in the same
order, and almost exactly along the same timeline, except for the white
fingers ( this is a new twist ). Weight goes down, patience level goes
down, grumpiness level goes way up! Curiously immediately after having made
the exceptionally myopic decision about not seeking any medical help, my
girlfriend starts to look at me in a new way ( not as smart as she thought,
with a death wish perhaps?). Oh yeah, I should mention that we work
together in a business that her father owns. It's small, but we're good at
it, and I love being able to see her whenever I want. She's getting tired
of my short temper ( lack of sleep ), and my reduced capacity to work is
affecting our customer relations. "Be patient", I plead. "It will be over
soon". Apparently it wasn't soon enough, she moves out, but we continue to
work together. After a couple of months of intense relationship work, and
steadily improving symptoms, we get it together, and things continue on as
before. YEAH! I have my love back, and I am getting better on my own, to
boot. Maybe I really am superhuman.
The following March ( curious )
Now, to put this in context, in our business, we start to get busy in
February, and it continues to build until about the 3rd week of October,
when the bottom drops out, and then we can catch up on all the paperwork and
things that we couldn't get done earlier.
Here comes the gut pain again! Now, comes the second worst decision of my
life ( the worst one is a story for a different day ), I choose not to say
anything about it! When pressed on why I am not eating very much, I just
say that I am trying to lose weight. This time though there are no swollen
nodes in my neck to give it away, so I just bide my time, and wait it out.
I should have filmed my life, because it was just a rerun from last year,
then I could have just fast forwarded to the end. Same s---, different
year! The difference this time is, I didn't start to feel better, and
things with my girlfriend are staying rocky. She knows something's up, but
getting me to talk about it is like pulling teeth. Fast forward past the
minutiae of our lives, to the salient point.
May 8:
She moves out. Oh, oh, it looks like it's permanent this time!! Yet,
instead of seeking medical attention, I choose to continue to work, and try
to salvage our relationship. Fast forward again.
2nd week of June:
What is this rash on my leg? Must have stepped in some Poison Ivy,
there's some out behind the house. So, after a week of topical creams and,
everything else I could think of, with no result, I decide to go to the
doctor. Oh yeah, did I mention that during this time I was popping about
4000mg of Ibuprofen to try an control the pain in my joints ( everywhere,
except my back. Sound familiar? ). Doctor orders some blood tests, and
sends me home with some samples of Vioxx. 2 days later I get a phone call
at work, from my GP's office, "You need to come in right now". Off to the
doctors office I go ( more than slightly concerned ). " You have to go to
the hospital right now, I have already talked to an Oncologist there and
they are expecting you", WTF? (expletive deleted) Why? "Your platelet
level is 4, and your other counts are all over the place" This is all
quoted verbatim because I will never forget that day! So, not knowing
anything about blood I ask what my platelet level should be, "under 160 is
low, you're lucky that you're not haemorrhaging right now" So, I get a lift
from my girlfriend ( not ex yet ) to the hospital. "Why do you need to go
to the hospital?". "There's something wrong with my blood". I didn't want
to say any more than that, because I didn't want her to freak out about the
Oncologist, and I was having a tough enough time keeping myself under
control. I get to meet Dr. Janet McKinnon ( if anyone in the Bradford,
Newmarket area needs a Cancer doc, she's it! ). They draw blood to confirm
the results from the previous test, and my platelets level has miraculously
risen to 6!! WOO HOO!! ( sarcasm intended ) I am admitted ( grudgingly,
hey, don't forget I am indestructible! ) to the hospital to begin the poking
and prodding anew, except after having heard my history there seems to be a
gleam of insight, in her eyes.
Hospital stay from Heaven & Hell:
In the beginning God created John, and he was mediocre. On the first day
I spike a fever of 40.7 ( for all you Yanks that's about 105 ) but, I really
don't feel that bad. "It's because you're delirious from the fever", they
say. Needless to say ( being the know it all I am ) I tell them that
whenever I am in pain I always feel hot. And believe you me, I was in pain!
Lots of blood draws later ( why do they always have to do it so early in the
morning? ), and the dreaded cold baths, and showers, and ice packs we all
conclude that maybe there is no infection. Ha!, I told them there was no
infection, and I was right! I am brilliant as well!! Now, it's 3 days
later, and after playing the game of "Guess what your temperature is now?",
( and actually getting good at it ) it's time to do the real
tests. Head, neck, chest, abdominal CT, results: "You have "itis" of
everything". If she hadn't been smiling when she said it, I would have
completely freaked out. "I am going to have a Rheumatologist take a look at
you". Ok, I haven't seen one of those yet, "Arthritis is way better than
Cancer", is a really good place to start rationalizing. Introduce Dr.
Edward Ng Tung Hing ( same recommendation as Dr. McKinnon ). More blood
tests, I haven't yet had 12 separate samples taken, nor have I had to do a
24 hr. urine collection. "Maybe this is not as good as I thought".
An aside about the staff on West 1A at Southlake Regional Medical Centre:
They are all angels sent straight from Heaven. Now, I have been known to
have a dry wit, and some people say that it is just a little too droll, but
I like it, and apparently so do they. I don't know if it was because I was
the only patient who was ambulatory ( with the help of Percoset )on that
whole floor, or if it was the completely useless, but distracting arguments
that I would start among the staff, ( the best one was, whether a pumpkin
was a fruit or a vegetable ) but they seemed to take a liking to me. Thank
God!! They let me use their computers to surf the net, they brought all
kinds of junk food to work, and let me share it with them ( oh yeah, did I
mention that when I had my fever I lost 20# in 3 days! ), and never gave me
a hard time when I asked for more pain meds. I didn't like it when they
made fun of my underwear though! ( I was having another bone marrow aspirate
at the time, no fair!! ) So, if any of you ladies are reading this, I know
that I thanked you profusely when I left, and I still come and visit you
but, THANK YOU! again for everything you did for me.
Back to the hospital:
It's about day 5 or 6 now, and the results from all the bloodwork are not
back yet. Apparently they only do the specific Lupus tests at one lab in a
very large hospital in Toronto, and there was some problem with the
equipment ( another strike against publicly funded health care ). So, it is
decided that another lymphnode biopsy should be done. Irony of all ironies
occurs, the ENT that did my original biopsy is in a room right down the hall
from me, being treated for some form of Cancer ( I never did get it out of
anybody ). I am not liking the way things are progressing, there are just
too many little complications happening, to give me a good feeling about
what is going on with my health. So, we set up the procedure with my ENT's
partner, only problem is he can't do it for a week. No problem, I'll just
go home and come back in a week. Nope, they're not done fixing what I came
in for in the first place, which was the low platelet count. So, after
getting topped up with Immunoglobulin and platelets, I figure it's time to
go, right? Nope, the bloodwork finally comes back, "You have Lupus, and
it's affecting your kidneys". FREAK OUT!! Now, I have to admit that during
this whole time, my girlfriend was a real trooper. She came everyday after
work to visit, never complained about the increased work load, because I
wasn't there, she even brought our dog in to visit with me ( the other
patients always looked forward to their visits as well, that dog is
great!! )and for that I am grateful. Fast forward a couple of weeks.
July:
I am out of the hospital, and feeling weak but, much better. It's time to
start fixing my relationship, and getting back to work. Humour of all
humours, 3 hrs. a day and, I am wiped out. Even on 60 of Prednisone, I have
to leave at noon everyday. Things do not bode well for the future. I have
to choose where I am going to fight my battle, so of course, I choose to
save my relationship ( IDIOT ). I start working longer hours, even though I
feel like dying at the end of the day. I start seeing a therapist, I am
trying everything I can to save my relationship, the net effect of which was
to make myself sicker. Here comes the big choice, "Who comes first? Me or
her?" I choose her.
August - Civic Holiday weekend:
My left leg blows up like a balloon the Thursday before the long weekend.
That's pretty typical for me, because I have yet to not visit a hospital on
a long weekend since May. I am diagnosed with a DVT just below the knee.
Below the knee is no problem they say, I start on Warfarin 5mg a day. I go
back the following Tuesday for a follow up ultrasound, and the clot has
moved. It's 4 cm. above my knee now. Start autoinjecting Innohep at home,
( it's kind of cool making smiley faces around your belly button from the
injection bruises ) and increase the warfarin to 7.5. My INR hasn't budged
in over a week, up to 10mg we go. Still no movement. Start another round
of Innohep, ( yep, more smiley faces ) INR goes to 1.6. Up to 12.5mg we go,
which is where we sit today. Blah, blah, blah, yada, yada, yada.
August 26:
"I don't think it's going to work out between us any longer", she says.
Holy crap!! What next!? "We've grown to far apart". No problem I figure.
I need the time to worry about getting better anyway ( I'm so tough ).
Besides, she doesn't really want to end it, she's just confused right now.
Off to work I go, fully intending to make everything right with the world.
My bi-weekly INRs show no change, and my ANA is down to +640 from +1280 so,
I figure things are well in hand. I won't bore everyone with the details of
my efforts to save my relationship, besides I am not too proud of some of
the things that I did. Maybe on a different day.
September 20:
"I'm seeing someone else" That was bad enough, but when she told me that
it was someone whom I considered a close friend of mine, I went ballistic.
In all the time that we were together, 12 yrs. by this time, I have never
entertained the thought of physically striking her, but, this time I did.
That was scary! So, being the petulant child that I was, I called her every
name in the book, maligned his genetic lineage, and generally made my
displeasure abundantly clear. I blamed everyone and everything, and went on
a self pity crusade of epic proportions. The following day I quit work, and
left with some more choice words. It's interesting how, with time and,
seemingly, only with time, we can look at something so painful with a sense
of detachment. The Celexa doesn't hurt either. LOL. I thought for sure
that, this part of the story would garner more of my attention. Maybe I
will look at this a little closer or, maybe not. Fast forward to kidney
biopsy time.
October 22:
I chose to leave out the various, and sundry presentations of the Lupus
during the previous month because, I know for sure that they were only
brought on by the increased stress level in my life. Enter Dr. Esther Szaky
( I have been truly blessed with some really first rate, caring medical
providers ) I checked in to York Central hospital for my biopsy. I tried
everything to get those nurses on my side, but to no avail. Until, when
they were trying to start my IV ( I bet I forgot to mention that, since my
initial release from the hospital, my head had been stuck in my
refrigerator, and I had gained 50 lbs. ) I said that I had turned into Bib
the Michelin Man, because I was so full of water and fat. Well, apparently
self deprecation works better the closer to the big city you get. So, with
the nurses firmly on my side, and the biopsy under my belt, ( everything is
easy after an aspirate ) I get Dr. Szaky to boot me out after only 1 day.
Sweet!! Now comes the waiting game again. A couple of weeks, and follow up
appointments later, come the results. Stage 2 Class V blah, blah blah. Oh,
the arrogance of the young of mind! "It's bad, but not life threatening,
yet". "You show no signs of cresenting". She explains the damage to me in
great detail, but I'm not really listening. I stopped hearing her when she
said "not life threatening", notice the lack of "yet". Great I won't have
to go on Cyclophosphamide, I've been doing tons of reading since July. I
can do low dose Prednisone and Imuran, lose all this water, and not have to
worry about all the side effects of the Cyclo, or high dose Prednisone.
During this time, I had started to get my career path in order. I was
studying to write my MCSE certification exams, with the thought in mind
that, eventually I was going to be a CCIE ( Cisco Certified Internetworking
Expert ) the Holy Grail of computer networking. I was bound and determined
to show my ex what a huge mistake she had made, and to keep living in MY
HOUSE, maybe more on that issue later, or maybe not. Everything was moving
along quite nicely, I had started to analyse my life in excruciating detail,
and I was seeing for the first time the mistakes I had made, and was closing
in on why I had made them ( thank you Shelagh ). Most times it takes
something huge to make you really see yourself.
November 30:
"What do you mean I'm going to have to do IV Cyclo?", "I thought that the
damage wasn't that severe". Exactly what I didn't need to hear. I had been
hoping beyond hope that I wouldn't have to go the Cyclo route. Apparently,
I wasn't handling the stress in my life well enough up to that point,
because my urine protein levels were still climbing, even though my ANA was
down to +320. I was up to 8gm/24hrs. Time to re-evaluate my life again.
If I have another flare of the severity of this last one, it might damage my
kidneys to the point of no return. How am I, the master of guilt, self
flagellation, and stress going to prevent that from happening? Well, first
off, there is no way that I am going to be able to do a job with the salary
( and commensurate stress level ) required to keep MY HOUSE. Just like
that. As easy as that, the single hardest decision I had ever had to make,
in my whole life, was made. It was amazingly easy! What a relief! I knew
as soon as I made it, that it was the right decision. I could just feel it.
I can't explain to you what this place means to me. When we bought it, it
was just a shell. For the next year or so, myself, my brother and my ex,
worked on this place, building our dream house. I had no intention of ever
leaving this place. Besides, you just can't beat the look on people's faces,
when you say you live in Utopia. Alas, as with my ex, it is not to be.
December 1
Screw it! I'm taking the month off from worrying! Just concentrate on
getting better.
December 15
I am starting to get the hang of it now. Even when all I was doing was
running from appointment to appointment, I still had a schedule. Now with
everything on hold until I start the chemo in January, and no appointments
before then, I have a lot of free time. Sometimes I get up with a plan in
mind, and sometimes not. Like today, I had no intention of writing this
autobiography for people that I don't even know. Now, that I have almost
finished it ( yeah? ) I feel like I have accomplished something of more
importance than say, shovelling my driveway. This introspection stuff is
pretty scary. Who wants to see themselves as they really are?
So, here I sit, 6 hours after starting this post, broken hearted ( yes,
still ), still sick, swollen up like Bib, unemployed, and on the verge of
insolvency, but I don't really care. IT IS JUST TOO NICE OUTSIDE, TO BE
SAD!!
Thanks for reading all the way through this post. I hope that I haven't
offended anyone with it's length, or breadth of topics. I still can't
decide whether or not I'm actually going to post it. My first reaction is
that it is just self indulgent, sympathy seeking. But, on second thought, I
feel better having written everything down for all to see. Humility, is a
good leveller. I welcome all replies, good or bad.
Thanks for your time,
John
It may be, that my life's sole purpose is to serve as a warning to others.
Tina
wow great summary of events.. and a great attitude you have, Im Tina,I mostly
lurk also because I hate to post as I cant spell & my grammor bites as you may
find ( & others already know.. haha) .. wow.. sorry to hear of your long
battles, most here can relate to your feelings & those situations you wrote of
in your life.. Hang in there & I hope you stay and post more.
anyways I wanted to just say Hi...Hi John.
Hugs, Tina
(oh and you must remove my dirtysox to reply to me byE- mail)
BJ
I would first like to welcome you. I was a "reader' for a long time too. I
was reluctant to talk to other people about my problems, even in this way. I
finally decided to post and found it helped to become involved. I tend not
to share a lot of the day to day things with my family. I don't want to drag
them down. Actually, I go to great lengths sometimes to cover up. They are
very supportive, so I am lucky. I am Canadian too. I grew up in Toronto. I
know the type of heavy, wet snow of which you speak. I now live near Regina.
I have never met anyone who had a lower platelet count than I. My count was
6. It took a very long time for me to get a diagnosis. I do not have a
facial rash either. I have CNS involvement. I also have pernicious anemia,
and a WBC of 2.3. I am on 150 Imuran and am supposed to be on 10mgs pred. I
was on 60mgs, had the IVIV, IV pred, and a number of asst drugs. I have a
lot of joint involvement. My skin has also changed dramatically. I have
several types of antibodies between the dermis and epidermis. I lost a good
deal of my hair during my last flares. I have been reasonably stable for the
last nine months. I try to keep a happy attitude. I am lucky there too, as a
tend to be an optimist. I am not saying that I like what I see in the
mirror, or that I like my situation. I do think I have gained compassion for
other people and I take pleasure in accomplishing small task: or in things
like snow on the trees. I am glad that you have joined us and shared your
story. Wes will be pleased to see another man on board. He is out numbered
by the girls here. Please don't just read. Talk to us about anything. We all
alternate between venting and helping. Once again, welcome.
Regards,
BJ
"John" <john...@hotmail.com> wrote in message
news:7nOS7.46848$%26.49...@news20.bellglobal.com...
BJ
I just wanted to add a couple of things to my earlier reply. My mind kicks
in slowly I'm afraid. I had a lymph node biopsy( from the groin area), bone
marrow asprirations(ouch), and I have veins that hide and blow as soon as
the IV line is attached. I do not have kidney involvement. I don't recall if
I mentioned that or not. I was happy on Thursday because I saw my
hematologist and I did not need a bone marrow done this time. Little
victories mean a lot. Talk to you later. I will probably remember something
else.
J Wootton
> [lots snipped]
> So, here I sit, 6 hours after starting this post, broken hearted ( yes,
> still ), still sick, swollen up like Bib, unemployed, and on the verge of
> insolvency, but I don't really care. IT IS JUST TOO NICE OUTSIDE, TO BE
> SAD!!
>
> Thanks for reading all the way through this post. I hope that I haven't
> offended anyone with it's length, or breadth of topics. I still can't
> decide whether or not I'm actually going to post it. My first reaction is
> that it is just self indulgent, sympathy seeking. But, on second thought, I
> feel better having written everything down for all to see. Humility, is a
> good leveller. I welcome all replies, good or bad.
>
Hello John,
I'm so glad you are here, for Wes, the other males who've recently posted and/or
might be reading and even me. My bro has Lupus but not as severe as any of you
yet. His ANA has been 1280 for quite some time now.
I worry about him, he's in BC, I'm in London, Ont. We grew up in La Belle
Province. He lives off the grid on a mountain. Solar panels combined with
(backup system) car batteries for electrical. Septic system. Horse, cat, dog.
He collects water in barrels but buys water from the gov't (the other side of
the mountain). A very long piping system from the top of the mountain down to
his "cabin" brings him fresh spring water. A wood-burning stove heats his cabin
and his modified water heater. He's built at least two houses in his life. He
has sleep apnea so goes to bed looking like an astronaut ;-) He's fighting to
hang on to a stressful 3-day job..the rest of the week he crashes. He was
educated as a math and science teacher..he's brilliant but had to give that up
years ago. I think that perhaps the Lupus was affecting him long before he even
suspected. Thank goodness for now his kidneys are fine.
I can honestly say I've never read such a long post that could make me laugh,
chuckle and cry, all at the same time.
My american lupie friend says that I say "aboot", I don't. yes, we had snow
here but it melted. After I shovelled off the car, I shovelled the ice from
inside my freezer.. (never mind, boring).
Just wondering if you could clarify. What exactly is causing the abdo pains? the
Glomerulonephritis? (hoping not pancreatic involvement like Wes)
Why were your fingers turning white? Raynauds?
Don't give up, miracles happen. Maybe you'll find a new way of earning a living
(at home?) and still be able to rebuild some of what seems slipping away. For
instance, is there any way that you could share house living/expenses with
someone else? Maybe you can still work on your CCIE ?
Glad you're here. Hope you'll keep posting.
J
PS Utopia is wherever you are (with your positive attitude).
J Rogow
John <john...@hotmail.com> wrote in message
news:7nOS7.46848$%26.49...@news20.bellglobal.com...
> Good Morning everyone;
Good morning, John!
Sorry you have had to go through so much, but glad you found us.
We've all been there/done that to one extent or other, so we understand.
Feel free to vent, heaven knows we all need to at times.
Judith, fellow Octoberite in SoCal
J Rogow
Please post a photo of the snow.
Judith, missing snow in SoCal
John
good to know that you try to be optimistic most of the time. I must admit,
that is not my strongest suit. Never the less, I work at it everyday. It's
amazing how, when we're forced to notice, the smallest things seem so much
more important. I can't help it anymore, I have to ask: What was chemo
like? I know that's vague but, I have no idea of what to expect, and I
would like to be a little prepared. Thanks again for your detailed reply.
Later
John
BJ <Ba...@sk.nojunk.ca> wrote in message
news:QyQS7.1550$tlDf.6...@tomcat.sk.sympatico.ca...
John
too! Grammar, and spelling? Pshaw. That's why they invented spell chequers
write?
Later
John
Tina <broken...@cs.comdirtysox> wrote in message
news:20011215160939...@mb-ci.news.cs.com...
John
be welcomed to the group.
Later
John
J Rogow <JRo...@ridgenet.net> wrote in message
news:9vh5rf$3m$1...@delphi.ridgenet.net...
Barbara Petty
Welcome!! Altho I am sorry that it took a diagnosis to lead you to this
group, I am glad that you found your way here.
This may be a small group, but it is full of caring and loving people.
Most of us here have never met any of the others face-to-face....but we
open our hearts to each other, share our worries and problems,ask
questions, and tell on ourselves sharing the funny things we do or say
when we are having "brain farts"LOL ( yes, John that is a medical
term...so I can say it in mixed company . It is when we have CNS
involvement)
Hope you decide to hang around here with us...Seems like you'll fit
right in with the rest of us....post often.
Please know that you will be in our thoughts and prayers.
barbtoo
east tennessee
BJ
have Shepherds. We had a lot of friendly competition going on when we were
in obedience trials together.
Hope you have a good night.
BJnews:CmUS7.43740$eF1.4...@news20.bellglobal.com...
> The reason for my rant, and my missing baby. I have better ones of the
> snow, nothing from today though. I wish I did, it was just gorgeous here
> all day. Enjoy.
>
> How come you're missing the snow? Where did you grow up? You can have it
> all as far as I'm concerned.
> One non-snow loving Canuck> news:9vh5va$3t$1...@delphi.ridgenet.net...
J Wootton
my place/web page)
By afternoon, it had just about all melted.
http://www.trygve.com/first_snow_2000.html
We were blessed this year. The branches and trees weren't damaged
because the leaves had already fallen. (the weight of an earlier heavy
snow can cause serious damage).
Can we send you all ours? (after Christmas).
J
wards
I have had a 3 and a half year battle with Lupus SLE Lupus CNS and now
Polymyositis and Diabetes typo. 2 and a few other complications mostly side
effects as you have most likely read.
I loved you post as it is my gut reaction to try to out rum theses illnesses
that have taken so much of my life. But as we know that does not always work.
But It too has taught me patience and in doing that taught me to look at the
world and listen and pay attention.
You hit on so many of my emotions and where my heart mind and soul is that I
just have to say thanks for the knowledge that there is someone out there.
My family has had alot of other unhappy things to deal with and this group has
gotten me through so much of that. I hope you will be around and post more.
As you can see it is wee hours of the morning and this last week I did a 3000
regiment of medrol IV needed as a result of meningitis/migraine side effect
from Gamma Globulin my sleep is a little sporadic to say the least.
It was nice to get up and have your post to read. I wish you all the best and
please keep in touch with us.
I believe whole heatedly that our lives are about teaching others.
A quick example if you have seen the posts of my son and future daughter in law
losing there baby and her mother being so unsupportive..... Well she told them
that Lupus is no big deal and I am just faking to get attention. That it is
never fatal and easily treated. I have never even met this woman face to face
only briefly in the phone. So you see we have alot of work to do.
Please take care and keep us" posted"
By the way I grew up a little south of Syracuse ( close to Canada) and my
birthday is Oct 17 just curious. (0: Oh and I agree I was on cytoxan for a year
not such a great thing. I have also taken plaqunil , imuran, to no avail.
Take Care John your post was much needed not in the least self indulgent
Cindy
J Wootton
> I believe whole heatedly that our lives are about teaching others.
>
> []her mother being so unsupportive..... Well she told them
> that Lupus is no big deal and I am just faking to get attention. That it is
> never fatal and easily treated. I have never even met this woman face to face
> only briefly in the phone. So you see we have alot of work to do.
Hello Cindy,
I guess ! Maybe it's time for a face-to-face, meet for tea/coffee, at which time
you could drop her off an info package about Lupus? Possibly part of the confusion
is between Lupus and Lupus SLE?
Here's one http://www.niams.nih.gov/hi/topics/lupus/shades/index.htm
25? years ago, that's what my then boss said, in relation to a lady (who had been
sick for some time, but her doctor didn't know why) who was rushed to hospital and
dx'd with Lupus. (now for lurkers, remember this was a long time ago and perhaps
weren't as good at controlling the symptoms back then). ex-boss was
stunned/shocked when after a few months in hospital, she died. She was in her
mid-30's IIRC
A friend of mine's family is on her case, even tho they previously had stated that
they understood. Guess they didn't.
Think it's time I wrote a letter to local newspaper about Invisible Disabilities
(since I see same concerns expressed about attitudes about FM, MS and a number of
other chronic illnesses). Thanks for reminding me.
Best,
J
John
necessary, you may send it to my cottage. The place needs a new roof, and
the more snow the better my chances of an insurance claim.
Thanks in advance
John
J Wootton <jwoo...@rogers.com> wrote in message
news:3C1C7A9D...@rogers.com...
John
most about this mess. I know that part of it is the Lupus, but most of it
is the meds. The memory lapses are infuriating at best, and down right
depressing at worst. I am not a big fan of membership in the cognitively
impaired club. Sometimes when all you have the energy for, is a crossword
puzzle, and you can't remember why, say, July 4th is important, it really
gets to you. But, as long as I can still make fun of it, I'm winning.
Later
John
Barbara Petty <bwp...@worldnet.att.net> wrote in message
news:XiVS7.297897$W8.10...@bgtnsc04-news.ops.worldnet.att.net...
John
that the more I closed up emotionally, about everything that was going on in
my life, the more I needed to talk about it. I am glad that everybody is so
supportive of each other here. We all know what it is like to feel like a
burden to someone else. I have read the posts about your situations as well
as your son's. I don't really know what to say that is not going to sound
like a cliché, or a platitude. I am not a very big fan of either one. Yet,
there is always truth in them somewhere. So, I will just say to you; Hang
in there, I'm pulling for you and your family. I hope you feel a bit better
today than yesterday.
As far as your future DIL's mother goes, I say forget it. I have first
hand experience with trying to get someone to understand what it is like to
have Lupus. It was a waste of time. Your time and energy is better spent
getting well. When this woman is ready to understand, she will. If she
never does, then just think about all the time and energy you would have
wasted. Spend it on yourself!
Syracuse! Now there's a city with snow! I know a few people from that
area, and I am glad I live here. LOL. ( bad experience with an old
supplier )
B'day 10-06. There seems to be lots of people with Oct. b'days here.
Must be because there's nothing to do in the winter, except the really fun
things. LOL
Later
John
wards <jcwa...@earthlink.net> wrote in message
news:3C1C823B...@earthlink.net...
John
Now, hold on for a minute. Before you do anything crazy like educate the
masses about us, I feel that we should think this all the way through. If,
everyone understood what we are going through, what would we do then? How
can we be frustrated with ignorance if there is none? What would we do with
all the extra time and energy? Get better? That seems a little selfish to
me. Besides, I kind of like being in this club. It makes me mysterious,
and a little dangerous. And we all know that women are attracted to
mysterious, dangerous men. So, if you still need to make it a mission,
please wait until I am firmly planted in a relationship based solely on
misconceptions and unrealistic expectations.
TIA
John
J Wootton <jwoo...@rogers.com> wrote in message
news:3C1C8ECC...@rogers.com...
Tina
ok is brain farts like CRS syndrum? (Can't Remember Shi*)?? I sure have that
alot..sigh
Tina
ah spell chequers..wat dat? us po folks with crappy ISP's (compuserve/aohell)
dont gotz dem...hahaha..none seriously!!
Andy
<jwoo...@rogers.com> wrote
[]
>Think it's time I wrote a letter to local newspaper about Invisible Disabilities
>(since I see same concerns expressed about attitudes about FM, MS and a number
>of
>other chronic illnesses). Thanks for reminding me.
>
out hats saying "I may look OK now but it's taken four hours to achieve
it". Perhaps the answer is to put your arm in a sling, so you *look*
ill.
--
Andy [Editor, Austrian Philatelic Society]
For Austrian philately <URL:http://www.kitzbuhel.demon.co.uk/austamps>
For Lupus <URL:http://www.kitzbuhel.demon.co.uk/lupus>
For my other interests <URL:http://www.kitzbuhel.demon.co.uk>
J Rogow
Old and New England - and I think snow is beautiful . ..
I just don't care anymore to drive in, dig out, slip, fall, in it anymore.
Judith, Chocolate lab fan in SoCal
BJ <Ba...@sk.nojunk.ca> wrote in message
news:L2WS7.1582$tlDf.2...@tomcat.sk.sympatico.ca...
J Rogow
Tina <broken...@cs.comdirtysox> wrote in message
> ok is brain farts like CRS syndrum? (Can't Remember Shi*)?? I sure have
that
> alot..sigh
Also known as "cranial flatulence"
J Rogow
Judith, a "big 10-4" in SoCal" in SoCal
John <john...@hotmail.com> wrote in message
news:%61T7.269$J%2.5...@news20.bellglobal.com...
> You're welcome. I'm glad I could help. Every little bit counts. I found
> that the more I closed up emotionally, about everything that was going on
in
> my life, the more I needed to talk about it. I am glad that everybody is
so
> supportive of each other here. We all know what it is like to feel like a
> burden to someone else. I have read the posts about your situations as
well
> as your son's. I don't really know what to say that is not going to sound
> like a cliché, or a platitude. I am not a very big fan of either one.
Yet,
> there is always truth in them somewhere. So, I will just say to you; Hang
> in there, I'm pulling for you and your family. I hope you feel a bit
better
> today than yesterday.
> As far as your future DIL's mother goes, I say forget it. I have first
> hand experience with trying to get someone to understand what it is like
to
> getting well. When this woman is ready to understand, she will. If she
Jackie
> Yikes, the dreaded "brain fart". That is one of the things that bugs me
the
> most about this mess. I know that part of it is the Lupus, but most of it
> is the meds. The memory lapses are infuriating at best, and down right
> depressing at worst. I am not a big fan of membership in the cognitively
> impaired club. Sometimes when all you have the energy for, is a crossword
> puzzle, and you can't remember why, say, July 4th is important, it really
> gets to you. But, as long as I can still make fun of it, I'm winning.
> Later
> John
Hi John, Sorry that you meet the requirements for membership in this group!
But, since you do (and then some!) you could not find a better place to hang
your hat. I'm a charter member of the cognitively impaired club. I use
crosswords as my guage for the day. It'll be a good day if I can work
through a puzzle without getting frustrated. If not, watch out.
Seriously, you have yours hands full. I hope you get some real relief
soon. My lupus is very mild - I'm very fortunate. My heart goes out to
those of you who manage to smile and to help others in spite of your
circumstances - That's you: Barb, Cindy, Wes, BJ, Ruth, Tina, Janers, and so
many more - please blame the brain for those names I've missed.
Jackie
PS. Used to live in Oshawa as a youngster and loved every minute of it -
those Lake Simcoe summers! (1947 & 48) - now retired in California.
Lee Thompson-Herbert
J Wootton <jwoo...@rogers.com> wrote:
>Possibly part of the confusion
>is between Lupus and Lupus SLE?
There _isn't_ a difference. SLE is just "systemic lupus erythematosus."
Lupus is a generic term, so the real differences would be between the
different subtypes. Some people think of DLE (discoid lupus erythematosus)
when they hear "lupus." That's the skin disorder. But even it isn't
"easily treated," so I have to wonder what the hell that woman had hear/read.
All of us who have a diagnosis of "lupus" probably have SLE, though some
have secondary problems as well, such as lupus nephritis, and CNS involvement.
There aren't too many people posting in this newsgroup who _only_ have one
of the skin disorders (DLE or SCLE). Even those of us who started out with
just the skin symptoms usually didn't get a diagnosis until the ugly systemic
problems started showing up. A lot of us were told we had "sun allergy" or
"photosensitivity" until we started showing other symptoms. Actual diagnosis
of DLE (the scarring type) or SCLE (subcutaneous, causes ulcerations but no
scars) is pretty rare. It takes seeing a doctor who's really sharp to
get one of those diagnoses without other clinical manifestations.
I think the real problem is that lupus really _is_ a rare disease, and
a poorly understood one besides. Most people think that MS isn't ever
fatal, too. My father, who is pretty well educated, asked me the very
cogent question, "So after you have a flare, do you ever get any of it
back? Or is it like MS, where once you go down, you almost never get up
again?" My mother, on the other hand, was still trying to digest the idea
of "serious" and "potentially fatal." She _still_ has problems with that
sometimes. Even after the damn disease almost killed me. Some of it seems
to be a "it can't be THAT bad" mindset, but some of it is really, truly not
understanding much about biology. She's still kinda confused about the
real causes of AIDS, as well. Unfortunately, she seems to be about average
for a US citizen. Science and medicine are things that just happen, not
anything you have to read up on and understand.
Given that, are we _suprised_ that most people don't actually understand
what the doctors mean when they say that lupus is potentially deadly?
--
Lee M.Thompson-Herbert l...@retro.com KoX 1995, SP4
Head Muso, White Rats Morris
Member, Knights of Xenu (1995). Chaos Monger and Jill of All Trades.
"A head-on collision between Morticia Adams and Martha Stewart"
FBIWoman
complete. My first post was like that too. You'll find a good group of
people here, whether you post or not! Having this group there to "listen"
has been invaluable to me, especially when my family gets impatient with all
my medical lab tests, terms, trials and tribulations!
Susan
"John" <john...@hotmail.com> wrote in message
news:7nOS7.46848$%26.49...@news20.bellglobal.com...
> Good Morning everyone;
>
> I have been reading ( lurking sounds too sinister for my taste ) this
> group for some time now, and I now feel that I am ready to tell everyone
my
> story. It is mostly because of the replies that Wes got to his message
> about his kidneys. After I read them I knew for sure that everyone here
is
> pulling for everyone else, and who better to tell the story to, than
people
> that are going through the same thing. I must warn everyone up front that
I
> have been known to rant, and offer opinions in terms that would best be
> described as blunt, so maybe everyone should buy some ear plugs before
they
> read this post. LOL.
>
.......
>
J Wootton
I meant to write "between ??? Lupus and Lupus SLE" (???? meaning I forgot the word
Discoid)
Regards,
J
J Wootton
> ( Tongue planted firmly in cheek )
> Now, hold on for a minute. Before you do anything crazy like educate the
> masses about us, I feel that we should think this all the way through. If,
> everyone understood what we are going through, what would we do then? How
> can we be frustrated with ignorance if there is none? What would we do with
> all the extra time and energy? Get better? That seems a little selfish to
> me. Besides, I kind of like being in this club. It makes me mysterious,
> and a little dangerous. And we all know that women are attracted to
> mysterious, dangerous men. So, if you still need to make it a mission,
> please wait until I am firmly planted in a relationship based solely on
> misconceptions and unrealistic expectations.
> TIA
> John
;-)
Would it help if I told you I empathize?
When I got sick, I was told "you can't keep up, not only that but I've now
raised the bar".
The sad (or good) part is that whenever we talk/visit, we still get along
famously.
We still even tussle over control of the mouse LOL
J
J Wootton
> >
> All too true. Sometimes we think we need a large flashing neon sign on
> out hats saying "I may look OK now but it's taken four hours to achieve
> it". Perhaps the answer is to put your arm in a sling, so you *look*
> ill.
Yep, combined with that "healthy rosy cheek look", I imagine it's difficult for some
to understand Lupus.
Thanks for the links by the way. I keep having to look for "lupus in men". Now I've
saved it.
J
J Wootton
I changed my mind (about letter to newspaper). Why? because the last 3 times I
did so about health issues, I got bombarded with phone calls (both in-town and
across Canada) and I'm just not well enough to cope with that anymore. I'm in
the phonebook and the newspaper won't print an anonymous letter. People clip
articles/letters and mail them to friends/relatives.
At least two of the issues (thyroid, fibromyalgia), turned into very long calls
where my brain was picked and people were looking for resources. Enter long
explanations about how to access newsgroups.
Anyhow I e-mailed the health editor and suggested it was perhaps time for an
article on Lupus.
Also mentioned this NG. We'll see. If they do one, I'll post it here.
J
(tired in London)
Wes Johnston
Hi John!
Welcome. This is a terrific group.
Sorry it took so long to respond, but I received the diagnostic
version of a torpedo amidships last Friday. I had to take a few days
to absorb it all, and perform the necessary attitude adjustments.
Dialysis is no longer just a distant memory, but a part of my near
future.
Anyhow...I cannot give you advice about lupus. There are others here
who are far more knowledgeable than myself on the subject, yourself
included. I have not even been diagnosed as yet. My kidney problems
stem from Alport Syndrome, which has nothing to do with lupus.
What I can tell you is, that no matter how unpleasant, do the
chemotherapy. It is temporary, and it will save your kidneys. You
really, really want to do that. Renal failure is to be avoided at all
costs. But, I think you know that. You are very intelligent;
probably more so than some doctors you will come across.
I wish you nothing but the best. You seem like a great guy!
Wes
On Sat, 15 Dec 2001 15:27:33 -0500, "John" <john...@hotmail.com>
wrote:
>Good Morning everyone;
>
> I have been reading ( lurking sounds too sinister for my taste ) this
>group for some time now, and I now feel that I am ready to tell everyone my
>story. It is mostly because of the replies that Wes got to his message
>about his kidneys. After I read them I knew for sure that everyone here is
>pulling for everyone else, and who better to tell the story to, than people
>that are going through the same thing. I must warn everyone up front that I
>have been known to rant, and offer opinions in terms that would best be
>described as blunt, so maybe everyone should buy some ear plugs before they
>read this post. LOL.
>
Sherry
Great post!
Sorry that you have had to join this club but you couldn't find a better
group of people.
Being ill and accepting it isn't easy and I guess it takes a very special
person to continue to love, support, understand etc etc etc. Many of us
here are fortunate in that way others not so "lucky". I must say it sounds
more like her loss!
Just wanted to add my welcome and to let you know that we all look forward
to seeing you post more often!
Sherry
Sherry
I haven't any "info" to add but just wanted to say that I am glad to see
your post and am praying that you will find something that puts you on the
road to recovery!
Hugs,
Sherry
ruth tay
wrote:
Hi, Andy you mentioned arm in a sling. doesn't work!! I ventured out
to the market today with a brilliantly colored sling and a little old
lady slammed into me with her shopping cart and then glared at me for getting
in her way. Since I was in my usual brain fog I must have looked at her
like I was an escapee from the local asylum or the pub. ruth