Monday, November 29, 2010


There are two different kinds of pain.  Emotional pain and physical pain.  I have had no shortage of either in the last year.  Recently, my physical pain has been getting a lot worse. 

I have been in pain since all of this started.  In fact, it all started with a headache.  A headache that got more severe and more frequent, nonstop in fact, as time went on.  I still have headaches.  Fortunately, or unfortunately, I have gotten used to them.  Even though I still have a headache almost 24/7, I have been able to keep them to a tolerable level most of the time.

Last November, I started experiencing muscle pain and tenderness.  It started in my upper legs and butt (glutes).  Ever since then, it has progressively gotten worse.  I never thought I would be the person who had to take pain medicine daily.  Well, I'm that person.  The pain in my hips (I say hips because it's easier than saying upper legs, butt, and lower back), has gotten to the point where I am limping around half the day.  As the day goes on, the pain gets worse.  Over the last month or more I have really noticed the pain getting worse and worse.  As if the fatigue, shortness of breath, and every other symptom wasn't bad enough!

In addition to the pain caused by my dysautonomia/POTS or whatever chronic illness I have, I have also had to deal with the pain of an ovarian cyst.  A few months ago I was having sharp pain in my lower right abdomen.  It would come and go but I also had a constant dull ache in addition to the intermittent sharp pains.  I had an ultrasound and it showed that I had an ovarian cyst.  I went on birth control pills to try to get rid of it and luckily it went away without surgery.  Unfortunately, it was causing me a lot of discomfort while waiting for it to go away. 

Well, guess what!  I am almost certain I have another one.  Same side.  Same pain.  But this time it's been worse.  I have been in tears today because of the pain in my abdomen and lower back.  The pain meds I've been taking for my chronic muscle pain have not been helping the pain in my abdomen. Lucky me!

As if I needed something else!  I got in with my ob/gyn tomorrow and I will see what she says. 

I will say that I had a few things on my mind that were getting to me today.  Since my pain got so bad this evening, I haven't given one thought about any of those things.
And with that, I will leave you with a quote...

"The only antidote to mental suffering is physical pain. " - Karl Marx

But not always.

Tuesday, November 23, 2010


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.