Thursday, May 19, 2016

Making the mistake of waking up

Yesterday was Shelbie's transfusion and things went alright.  It is becoming an annoying thing, sort of, and my house is turning into a clinic I feel.

I made the mistake of actually waking up yesterday AND getting out of bed.  About 3 am, I was in the most impressive, achy pain from my shoulder down to my ankles. I woke myself up with my own moans of pain. I was so tired, I tried to ignore it until 6 and then got up. I could hardly walk.  My hips and knees were creating so much pain for me.  It took me twice as long to get showered and dressed and by 8 am I thought I might rather die.

I put on my big girl panties and downed a handful of vitamins including my new favorite, Vitamin Ibuprofen then attempted to not let anyone know I was miserable.  That plan worked out pretty good until about 4 when the nurse left and by 6:30 I caved and went to my neighborhood urgent care.

At first the doctor thought it was bursitis in my knee but then he started asking probing questions to which I had to fess up to. I've had to start wrapping my thumb joints again because of extreme pain, my shoulder has lost a lot of motion, I feel sick every day, I've been dizzy and had a little blackout or two over the past two weeks and the list goes on..." are having a lupus attack!" He said.

Of can't just be bursitis...well it is but brought on by Lupus.  Blah.  So, he gave me a steroid shot in my knee joint which now feels like I have a gravel pit in place of cartilage and I am suppose to stay off it until Monday. He wants me to start on the Lupus meds but I am stubborn.  If things are not remarkably better by next week, I may consent to a week or two of steroids because I am truly miserable and that would be my last resort.  I sure hope the prescription comes with a white coat with extra long sleeves and silver buckles because that is what becomes of me on steroids.

I love these pictures....This is totally me..."NO, We're fine.  Never been better!  Living the great American Dream! Thanks for asking!"  Bigggg, glowing smile. 
The weird thing is...I feel like I have lost all strength in my legs.  Like I'm trying to walk in 8" Stilettos across an ice rink so there is something funky going on neurologically. Anyways...trying not to alarm my people.

In other news, we did our DNA testing last night for NIH, as well.  Interesting. Sam had to fill out a stack of papers since he's a Kidadult now.  He came to the question where they wanted to know if he wanted to be notified of any problems they find in his Genes.  He asked me what to put and I told him it was up to him.  He struggled and struggled. What a tough thing.  I was pained just watching him go through that decision.  He finally decided that he would like to know.  In my paperwork, I told NIH I didn't want to know.  Sam was bugged by that..."What if they find something they can fix? Don't you want to feel better?" He asked.

It's a probing question that does not have an easy answer.

And, before the fun ended, Shelbie had a rough reaction to her IgG today.  We debated for 20 minutes about making an ER run but she fell asleep and I hoped for the best.  We made it without a trip.

I hope our specimen's travel safely back to Bethesda.  Along with our packet, they let us know that they may want to fly us out there and spend a week as lab rats.  Awesome fun. I hope I get signed up for a sleeping experiment.  A new drug that allows you to stop breathing for a week or so and then come back 15 years younger, rich, married, and living somewhere on a beach selling kites and eating pineapple.

It sounds a little like a witness protection plan but let's be honest.  I need some protection from what I have witnessed living this life of mine!  It's about time.  Seriously, the urgent care doc said I need to get my stress under control, it's after me!  And killing me!



  1. I love the picture! I'm so sorry about the flare... I wish I had a better comment than that. Lupus sucks..Long ago I gave up saying that "sucks" is a bad word..well being sick sucks, so it is a bad word for yucky things in life like being sick, being divorced, being the one who looks at your kids who are sick, and no band-aid in the world is big enough to fix this one. Just know that if I ever win the lottery..(Yes I do play when it gets big, because hey, what if I did win.. I would have so much fun giving it away...haha) you will be set for life!

  2. Taunya! Funny, I will start praying you win the lottery!! LOL Thank you!

  3. Yes you deserve a wonderful vacation! I hope she wins the lottery! Take care of yourself because you're the only one who can! Love ya!

  4. I hope you are feeling better soon. Pain is a horrible thing. I'm glad you have such a marvelous imagination.