Re: my day and comments to a couple of you = long.
- From: "Squirrely" <sqjo@xxxxxxxxx>
- Date: Thu, 2 Aug 2007 23:46:00 -0700
Oh Kelly, I just hope you heal quickly and that the antib's work and keep it
under control and you have no more problems.
You take care and don't overdo it.
--
Love and Hugs to all
Jo the squirrely one
I kind of feel I have been out of action the last week or so but just was
feeling crappy. Really sore, then Sunday felt like an infection coming
on - yup. Monday night ab cramps and then diarhea lasting 2 days. Tuesday
morning - reached for urine sample container and got sample - pure red.
Crap. More diarhea all day. So phoned gp. Said to wait until we had
results so we knew what to do. Took until today to get results so that was
good - had appointments with general practitioner on the infection and on
the continuing edema problem that prohibits shoes on feet and
rheumatologist in the afternoon - general 3 month check with list of little
things bothering me - little things that would send people with out all
this garbage to rd regularly.
Both appointments went well but it was an exhausting day. Doctor #1 -
massive urinary tract infection (lots of white blood cells indicating
infections and lots of red blood cells) duh! As if the pain and
frequency wasn't a big clue. So we (yes we - takes me to decipher all
this too because of history and meds) came to the decision that the mtx,
prednisone, rituxan and orencia was doing a major job on my immune system
and this is really just the same infection over and over with a break in
between. So now I am on 3 months of antibiotics - one that is fairly safe
and doesn't usually give yeast infections - Dr. Atkins (rd) confirmed all
this and said good! So maybe I will start to feel better for longer than
2 weeks in a row. Next doubled the water pill to get the edema down in my
feet. That is the limit it can go to but I have done all the non medical
stuff I can. So that is solved I hope.
Onto lunch and Mall. Bought a quilting book to teach children beginning
quilting for $5.99. I intent to take on 2 students when we get into our
new house - children this time which I have done before and enjoyed.
Then to RD. Agreed on morning decision. Increased my methotrexate to 10
mg (big whoop but keep in mind my major reaction was to 7.5 after 2 weeks
originially ) so maybe that will give me a edge. Decreased my lab tests
to monthly instead of weekly (thank goodness), gave me a cortisone shot in
my knee to decrease the bakers cyst so maybe that will assist my painful
knee that keeps giving out on me and won't bend without a sledge hammer
(we have been holding off on this for a year due to risk of infection
while trying orencia and then rituxan and getting my neurological stuff
under control), and finally told me it might even take 6 months for the
rituxan to work so not to be disappointed if it doesn't work right away.
That was disappointing but knew it was a possibility (had already talked
to Donna - thanks Donna - I wasn't surprised this way.). He really wants
me down on the prednisone but not going to happen until something else
kicks in. Told him this year had been hell and that without the 10 mg a
day of prednisone I would be flat down in bed. He didn't disagree at all -
told him he knew I could work hard to get it down when anything started to
work - in the meantime I do know all the risks but the risks of no range
of motion, total bedridden etc are also real - not even a risk but a
guarantee the way I am right now. At least I am getting out for a short
bit a day and managing to handle somethings.
So a long painful day filled with searching for bathrooms the whole time
thanks to the infections. And if the knee settles and the infection stays
away I might get more than 2 weeks in a row of crap! The little things
mean so much some times. We all know that.
I at least can laugh through all this. Things are okay and I am
struggling through pretty well actually but just as Kate was struggling.
And the solution was obvious once I knew the cause. After all this do I
get honorary physician status?? Thankfully I know what questions to
answer and ask when at the doctors and the solutions to propose.
So have been reading:
Duckie - so impressed. Need to know where you will be teaching and what.
I have a couple of friends that teach on quilt university and they love
it. I have taken a couple of courses there and they are great. The
needlework place sounds too tempting - I would never have any money! I
envy the grand - would love to cuddle a little one but not quite yet.
Kate - I understand - glad they solved that problem and hope the energy
comes soon.
Diane - I wish I knew the system. Tell your sister that the catheter can
stay in that long if the hygeine is incredible and she watches them.
Swabs cleaning each time the bag is changed, emptied often, always below -
gravity, gravity, gravity. It isn't ideal but.... Can she self cath in
the hospital bed safely? This situation is so cruddy. Seems like an
advocate might be needed right now - I know that Diane was getting pretty
good in rehab in getting help. Her husband did hire a private nurse for
part of the time though to keep an eye on her care and to do simple
thingsfor her. She had some similiar problems. I wish she were here -
she knew the ins and outs so well especially with her ms. I miss her so
much!
Am reading the rest. I am investing in grape skin but personally I am for
the large doses of red wine. At least it might make me so drunk the pain
of the inflammation will go down. Can I get a nobel prize for that
experiment - I will make sure I have a placebo group and a trial group -
anyone interested in joining.I am ready to be a guinea pig. Of course
might not react so well with the mtx so better not. Before any of you try
the large doses of r********** though please read the warnings and check
with your pharmacist and dr. my pharmacist would tell me not to mix it
with any of my meds - especially important if any of you are taking blood
thinners or blood pressure meds.
Anyhow should start to feel better soon and will participate again after
next week. Going away to moms on Monday to babysit and be babysat. Kyle
(my 5 year old nephew and apple of my life) and I have some books to read,
some songs to sing, a waterpark to run through (he has offered to cover my
scooter in garbage bags so it doesn't get too wet), grama's ferry to go on
( http://www.granvilleislandferries.bc.ca/), and pate and cheese to eat.
(well and I might cheat a little and drink some wine!). My mom, sister and
I have a date Monday to eat at my favorite lebanese restaurant - lots of
falafel, humous, goat cheese - getting hungry already. Home on Friday to a
lovely quiet house as Pat leaves again for the cabin on Friday morning for
the weekend. Lots of quilting time.
So take care everyone and don't forget to laugh at something today - even
if something stupid. I laughed at a couple of Kate's jokes - thanks
Kate - they cheer me up even though I often forget to tell you.
Kelly
.
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