Sunday, July 1, 2007

Kryptonite

   

Yeah.  Not enough Spoons, dammit.  Not enough.

I haven't had the Orencia IV medication for my Rheumatoid Arthritis for almost 3 months.  I did raise the dosage on my weekly Methotrexate medication, as a precaution. 

I have not felt any better or any worse, without it.  Sad commentary... or good one... I am not sure.  It just is what it is.

The flare that I was having, when I was dealing with all the numbness, tingling, burning and weakness on my left side is over.  By the end of April, when they were finally testing me for everything, it was gone!

Interestingly enough, when I am now having episodes of numbness etc., it is now popping up on the right side.  It hasn't happened but a few times, but it has definitely switched sides.  Bizarre.

So, let's recap.  Everything that sent me for further testing has disappeared.  It was never determined what was causing it.  It probably was the Lupus, it may be Multiple Sclerosis, no one is sure. 

An 'incidental' finding, during the testing, is a brain tumor that cannot be operated on, may or may not grow, but for now, is not causing any of the symptoms I was experiencing. 

I was thinking about switching to a highly recommended rheumatologist in NJ, who trained at HSS (#2 in the country in rheumatology), but he is no longer taking my health insurance.  I need to either find someone else or get back to my rheumy in the city, because I have not had blood work done since April. 

I will be having a closed MRI, under sedation, at the end of November.  It will be used to recheck the MS situation as well as the brain tumor.

Meanwhile, I am basically back to normal trying to juggle these unpredictable diseases, my family, the house, the pets, and obligations.

A recent survey/meme asked 'Where do you see yourself in 10 years?'  I could not even fathom a guess.  I do know that I have been trying to push myself much harder than before. 

The brain thingy has had a certain effect that way.  I feel as if, even more than ever, I need to do as much as I can NOW.

But, my body doesn't always want to cooperate and give me all the spoons I want! 

Friday was the sleepover.  Pumpkin and Pixie were as good as gold!  They ate like lumberjacks, candy, slurpees, chips, bagel bites and pierogis!  They went up to bed at 11pm and even though I still heard a small giggle around 1am, they were very quiet, and very well behaved! 

Saturday am we met up with Bob and Ilene and we all went to IHOP for breakfast!  It was yummy!  Then, off to the pool for a day in the sun.  Pumpkin went out to dinner with grandma and grandpa, and the boys, hubby and myself grabbed a bite.  Then, we went to drive gold balls! 

I only drove maybe 5-6, that was enough for me, but Hubby and the boys did a hundred or so between them!  They really had fun doing it, too!

Last night, I was so tired I went to bed right at 11pm when the kids went to sleep.  I still tossed and turned though, and I am fighting off a cold, so the throat tickle was annoying.

Today, I just hit the wall.  No spoons left.  :( 

I didn't have any reserve to push myself further than a jammie day in the house.

Tomorrow, the week starts anew. 

Hopefully, there will be lots of spoons at my disposal!  I am planning on needing them.  The heat has broken a bit, hopefully, that will help.

be well,
Dawn

19 comments:

toonguykc said...

Yes...the new week is starting, but at least there is a holiday to break it up!  Rest and be well, buddy!

Russ

nightmaremom said...

The week will improve :)  Feel better and get the much needed rest.
d

attitudeslc said...

I love you!  You seem like a most amazing person!  You can make people laugh even though you are going through quite an ordeal!  I had to wonder,

did you name the kid after the cat or the cat after the kid!  LOL

(P.S.  I know the real reason for the kid code names)

God Bless and you will be in my prayers, really!  

Fondly
Rosemary

tlgf1968 said...

i love the graphic! seems all the "extra" spoons in the world must've been taken up and shipped somewhere.  maybe congress is going to use them to fund its next c-o-l pay raise (?).  i've been horrific abt reading journals lately and didn't know abt the tumor.  shame on me and shame on it for picking you to grow in!  ((( big, gentle hugs!!! )))  should we shove a lemon up its butt? :)  all my love, tracey

erarein63 said...

Oh pooh on everything, and most importantly the "brain thingy"!  Pop on over to my Monday page.  I've got something that will sure to make you feel better.  And I had you in mind when I posted...De ;)

http://journals.aol.com/erarein63/DesThoughts/entries/2007/07/02/monday---adversity-and-the-jesus-painting/1137

astoriasand said...

I do hope you get all this sorted as soon as possible to do with your health.It is so sad when one is in constant pain.I had to laugh at the little giggle around 1am.Brough back many memories of when i was a girl and we used to giggle most of th enight.LOL!!I am sure they enjoyed themselves.LOL.Hope your cold feels better today and everything else.Prayers being said for you.Try have a lovely MOnday.Take Care God Bless KATH
astoriasand http://journals.aol.co.uk/astoriasand/MYSIMPLERHYMES

eml625 said...

You sure have a lot to deal with. I am sorry some days are tougher than others.
Be well,
Ellen

deshelestraci said...

I wish I could send you some spoons.  
Traci

jckfrstross said...

enjoy your week:)

Deb

chat2missie said...

Sometimes, a jammies day is good for the body and soul.  Sort of jump starts you the next day.  Hope your feeling better.
Missie

mztishgray0726 said...

I will say what you always say to me.  Take care of yourself please.  You can't really be there for everyone else if you are not taking care of yourself.  I pushed myself extremely this weekend.  I have no spoons left either and a bad attitude that I am trying to get rid of.  Please be well.  http://journals.aol.com/mztishgray0726/all-things-are-possible-2/ Tish G.

klconard1 said...

Will you be starting the Orencia again?
loving you
karyl

ktkamanski said...

It's the not knowing that seems to take it's toll. I hope the new week greets you with some comfort! Have a Happy Monday! Take care of you and yours!
Katie
http://journals.aol.com/ktkamanski/AlwaysBelieve/

tenyearnap said...

The "Spoons" story really puts thing sin perspective. Thanks for sharing it....and for giving some of your spoons to keeping this journal. --Cin

cherry2sweet2eat said...

aww sorry your going through this.

pharmolo said...

Not a nice position to be in, Dawn - but at least things are sort of tolerable

swmpgrly said...

all I can say is WOW I dont know if I would be as brave as you are. I guess if you need to be strong you find the strength somewhere.

lurkynat said...

hugs Dawn adn ahng in there!
love,natalie

sangrialel said...

I would need sedation for a closed MRI also.  I am horribly clausterphopic.  Linda