my day and comments to a couple of you = long.

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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