Today was one of those days where you have to decide if its worth it to get out of bed….Despite having a body that felt like it was made of glass shards and a horrible headache, I managed. I got up and took what Im gonna call a shower and drove to work.

And, even tho I cant say that I was as productive as Id like to be, I did manage to complete a few important tasks. Go me, right?

Then, the hammer fell.

Today I met with my rheumatologist and nephrologist to discuss the infusion treatment plan. However, my original treatment plan is moot for the time being. I will not be beginning the Benylsta treatments on Monday. Due to a horribly high WBC, I will be starting the immuno-suppressent therapy instead.

The norm for WBC is between 6000 and 10000 and mine is 35000. Thats the highest its ever been. When I was first diagnosed, they thought I had leukemia because my WBC was so high. And this? No wonder I feel like crap.

I have to say, I feel defeated. Ive been listening to my doctors. Ive completely changed my diet. No salt, no protein….no fun. Ive increased my potassium intake. Ive drank enough orange juice to drown a small cow. All this and my labwork shows NO improvement.


Granted, Im not spilling as much protein, but my potassium went even lower. Seriously?

And to boot, I got a steroid shot. Yes, SHOT. And it totally hurt.

 I spent about 20 minutes sitting in that parking lot crying my eyes out. How can I do all that Ive done so far, and NOT have any improvement? My body is betraying me and I cant even put into words how it feels right now.