Thursday, June 12, 2014

Radio silence....

It's been 2 months since my last post.....one would like to think that means that I'm doing well, but it's more like I don't have anything horrifically tragic to report, which I guess is good, but sad that my scale of life is "okay to horrifically tragic".

I think my job will be the death of me.  I'm a busy that I can't understand, describe, or get a handle of.  I don't have time to notice the nuances of my health that I once did, and for a person with a chronic illness, nuances are important.  They can help me identify triggers that make me feel bad, or help me notice things that make me feel good.  Now there's just.....no feeling.

A few weeks ago, I noticed that I was having a noticeable difficulty catching my breath.  It felt like I was walking up multiple flights of stairs, when in fact I was only walking from my car to my desk (a trivial distance, really).  I called my PCP to set up an appointment, as I was due for a thyroid check anyway, and ended up describing my symptoms to a nurse, who then told me to go to urgent care.  So I went to urgent care, and that's always a process.  People like me walk into places like that, and you can see the look on their faces when they see my labs.  It's like they're shocked that I'm still breathing.  Whenever checking in at any new place now, my line is, "I'm the healthiest sick person you'll ever meet".  They laugh, thinking I'm a nut job, and then they'll do labs.

Long story short, I ended up getting referred to the emergency room from urgent care, where I spent 6 hours essentially being ignored.  And get this....it's all because the urgent care's stat lab for potassium measured me at 2.9 and yet a couple of hours later, it measured 3.4 without any intervention.  So what that means is that the lab's measuring equipment is off.  And I got to spend 6 hours in an emergency room (out of network, by the way), only to drink a hideous orange liquid containing a boost of potassium and be on my merry way.

And yet, miracle of all miracles, I still have the exact same symptoms (sarcasm, my friends).  I can do a yoga class one morning, and yet the next day become winded walking.  It's unpredictable, insidious, and just plain awful.  And I guess I'm just supposed to "be okay" with it.   To feel "lucky that it isn't worse".

Screw that.  (I have harsher words, but that'll suffice for now).

Here's a great little ditty that I discovered last week.  I go to a medical building that contains my lab, my primary care doctor and my urgent care.  My PCP and the urgent care is an in-network provider, but the lab isn't.

They're in the same building.

They're all under Park Nicollet.

But CIGNA is a bloodsucking insurance company, so there's that.

My husband started the donation testing process and even that isn't going as I had thought.  Does anyone at the U of M give a shit?  I'm thinking no.  He's sent in blood work, I've done bloodworm, he did a saliva follow-up because time had expired.  And yet, here we are....3 weeks later, and no contact.  What the hell?  I mean......LIVING ORGAN DONOR WANTING TO DONATE ORGAN HERE!!!  WHAT THE HELL DO I HAVE TO DO?????



This would be my surrender flag.  


Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...