Update

Well, it's been awhile since my last post.  Honestly, I just haven't felt like it.  I have been distracted by a lot of things in the last couple of weeks so I haven't wanted to sit and type.  I do, however, need to give everyone an update.  A few things have happened recently.

First of all, I quit my job.  For those of you who read my previous post(s) about my problems with co-workers and my former boss, you probably think that that's why I quit.  I will say that was on my list of reasons.  However, it was at the bottom and only a small percentage of the reason.  I just felt like I couldn't do it anymore.  Some of my symptoms have been increasing recently, primarily my muscle weakness/fatigue, muscle pain, and general fatigue.  The twelve hour shifts were just too much.  I almost always felt bad by 10am, and I still had 9 hours to go.

When I started working PRN as a monitor tech, I did it thinking that it would just be temporary.  I wanted to use it as a stepping stone back to my full time career as an RN.  I had anticipated getting better over the course of the last year, not worse.  I also didn't think I would still be trying to figure out exactly what's wrong with me. 

I will have to admit that I also wanted to stay at that hospital because I, at one time, considered my emergency room co-workers to be like my second family.  I wanted to continue to work there even if I wasn't in the ER because I thought I still had the support of those people.  After many months of trying to hold on to friendships that just aren't there, I finally realized that it was time to come to my senses and move on.

So that's exactly what I'm doing; moving on.

Now on to the next order of business, and another way that I'm moving on... 

I have an appointment with Dr. John Shoffner at Medical Neurogenetics in Atlanta, Ga on December 7th.  On the following day, I have an appt. for a muscle biopsy to test for mitochondrial disease and possibly other neuromuscular genetic diseases. 

This appointment is a long time coming.  In October, I saw a neurologist at KUMed.  He finally recommended that I have a muscle biopsy.  I have done lots of research on mitochondrial diseases as well as other neuromuscular diseases.  I have wanted to get a muscle biopsy since I returned from Mayo.  After I started developing worsening muscle pain (to the point that I now take pain medicine daily for it), worsening fatigue, and had done more research I knew I needed a muscle biopsy. 

I have talked to someone who has POTS and has been diagnosed with mitochondrial disease; by Dr. Shoffner in fact.  He referred me to Dr. Shoffner and informed me that that is one of two locations in the U.S. that does fresh tissue muscle biopsies, which are the best when testing for mitochondrial disease.  Thank you, Todd, for saving me so much time and money by recommending that I go to Atlanta.  I also really appreciate being able to talk to someone who's been through all of this already.  Someone older and wiser.  ;-)

On that note, I am started to get tired of typing.  I have much more to say so I will try to post more often. 
I hope you all are well.  And thanks for reading. 



Robin