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

Tags: lupus, rheumatoid arthritis, spoons, brain tumor, kids, energy