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.