So Frustrated

Hey, y’all.

I really have no words for how frustrated I am with all this health stuff.

The new rheumatologist was a nightmare.  I went in with 13 years worth of lab work / history.  I mean I didn’t take in 1000’s of pages or anything but I had a very well compiled stack of labs that show the progress of my Lupus from the beginning.  Before she would even address the stuff I went in for (the bruising and a headache issue) she wanted to run baseline stuff that’s been well established for 13 YEARS.  It was crazy.  I mean really lady, I’m clearly bleeding and you’re worried about baseline stuff?

I haven’t written about the headache here yet but she was equally dismissive about it and instead told me to see an neurologist.  The one good thing she did do was actually have her staff set up that appointment and he was able to see me the very next day.

Good thing too because it turns out I have some small peripheral blood clots around the temple area of my head.  It’s scary…I mean obviously any clotting is scary…but it’s not the ‘get to the ER right this second’ kinda scary.

I had my PT / INR done and it has now spiked to a dangerous level and will now have to see specialist number 3 this week…a cardiologist…on Friday to try to figure out what is going on.

A little bit of potential good news…if you can call it that…is that I think I might have an idea of what the bruising is.  One of the best people I’ve ever known in my life 🙂 is a nurse at a major hospital and she showed my bruise pics to a vascular surgeon at her hospital and he told her it looks and sounds like something called Bateman’s Purpura.  Vessel inflammation and damage from blood thinners which is also triggered by steroids.  I’ve been on blood thinners for 14 years and on and off high dose steroids all year long.  There’s nothing you can do about it.  You just have to wait it out til it heals.  I’m currently weaning off steroids so hopefully that will help some but there’s nothing I can do about the blood thinner.  Gotta take it.

So anyway…that’s where things stand now.

Some food  pics…

Chowder / Cheddar Bays / Crawfish.  Yum.

Gruyere / Parm / Potato Gratin.  Was just playing around with this one and tested it out on a single potato.  Will definitely work on this again and share when I get it where I want it.  It was good but needs…something.

Gotta take Papa B to the Dr tomorrow.  Then Friday is my appointment with the cardiologist.

Hopefully next time we meet I’ll have some better news.  🙂