Where's a rainy day when I need it?

(image courtesy of http://rosymairim777.deviantart.com/art/Stick-Figure-Animation-Jump-Off-a-Cliff-358390289)


Today has been emotionally challenging for me.  I'm just not "in it to win it" today, if you know what I mean.  Ever have those days where everything feels like a battle?   Yup...had one of those today.

I don't know what triggered it.  I had a horrific nightmare last night (and I'm not one prone to those) but I couldn't get back to sleep (probably added to the overall misery of my day).  I had to go into the office, and while I may have been there physically, my mind was a gazillion miles away.  When I finally got home this afternoon I went straight upstairs and got in bed.  I laid there for 3 hours listening to an audiobook.  Who does that?

This chick does, apparently.

I crawled out of my own ass long enough to eat dinner and pick up Izzy at gymnastics.  I swung by CVS pharmacy to pick up 2 meds that I had needed refilled, and it wasn't until I arrived home that I noticed the note on the bag that said, "COUNSEL - NEW DRUG".  Uhhhh...what?  Eventually arrived at the discovery that my own doctor sent in a new prescription for the wrong form of the drug (powdered drink instead of tablets.....and the powdered drink is HORRENDOUS).  People would probably be surprised at the number of mistakes that happen when you have this many meds to manage.  Today was not the day for this.  I know it'll get fixed tomorrow, but now I'm stuck with 60 of these packets of shit "fruit-flavored" potassium that I had to pay for and it's highly irritating to me today.

I shall now put my jammies on and crawl back into my cave.  Hopefully I can sleep the grump off.

Why must some things be so hard? : FSGS Sucks

I tried to fill my tacrolimus prescription yesterday.  It's 5mg  2x/day, which equals 300 pills.  My insurance will only fill 180.  My doctor, a very busy doctor at Mayo Clinic, has to provide Cigna with a pre-authorization.  Seriously.  This is my life.  And now I'm going to spend a week of time I don't have sorting it all out.

I also spoke with some doctor at Mayo today about my last tacrolimus lab results.  My regular doctor and the fellow doctor from the last time are both out of the office, but she wanted to make sure that I got a follow-up, which was nice.  My trough levels were at 5.1mg 2 weeks ago, and we're looking for around 7.  This makes me assume that Dr. Fervenza is going to want to up my dosage, and it's around my current dosage that the headaches begin.  I've had one nearly ever day since last week, and I have zero quality of life when they hit.  Hell, I just wanna whole up in my bedroom in the quiet darkness, yet I have a JOB and a DAUGHTER and a HUSBAND and a HOME and a LIFE that I want to lead.

I know we're going to disagree about what the next steps are, but I hope we figure it out TOGETHER.  The doctor that I spoke with (who shall remain nameless because I just didn't bother recording it in my brain) mentioned cyclosporine, and I was like, "Are you KIDDING ME?"  She asked if I'd taken it, and I told her that I had in 2009 with no success.  I already know that I'm not doing it again.  I'll try a new drug, but not one that I previously took for the required amount of time with zero success.  I know what the side effects are, and unless there's some new study or data available, I have zero faith that it will work differently the 2nd time around.  This is where doctors and patients sometimes lose their way, willing to bang their head on concrete if they thought it might save their kidneys.  I'm not that patient.  I'm going to make sure they hear me loud and clear when I discuss my quality of life, because that's ALL I have right now, and I'm not willing to give that up when I know there's a better future that I should expect.

Started Acthar : FSGS Sucks

I started the Acthar Gel treatment last night (as I wrote about in my previous post), and I wanted to share...

THIS VIAL costs $31,000.  Holy.  Shit.

The necessary supplies, including alcohol swabs (granted, we forgot to wash our hands, but details :)

This is the band-aid that Izzy gave to me after my shot.  I feel bad because I screamed when Joacim injected it (does not feel good, but not NEARLY as bad as the Humira).  Anyway, she came out an asked Joacim, "What are you doing to my mommy????"  Cute, adorable, and I hate that she has to see this.

I don't notice anything unusual today, except (and this is gonna be too much TMI) but my urine smells "different" than normal.  And the tremors from the Prograf have started.  I forgot how much I hated it...I can barely read my own handwriting today.  THANK GOD FOR KEYBOARDS!!!  At least it doesn't affect my typing skills :)

Keep your fingers, toes and eyes crossed for me people!!!!!