Thursday, January 27, 2011

The Final Countdown

I have made myself some coffee and I have artificial energy, so now is the time to type away.

You may or may not have noticed the countdown on the right side of the page.  That is the countdown to my follow up appointment with the physician in Atlanta.  At that appointment I will receive the results of my muscle biopsy and blood work.  This is a big deal for me.  I have been waiting a long time for this.  I have a lot of hope that I will finally receive an accurate diagnosis on March 1st.  In addition to a diagnosis I will find out, therefore, the prognosis, treatment, etc. 

This is the first time that I have been hopeful that I will finally find out exactly what is going on with my body.  I left Mayo last spring with a diagnosis of POTS.  I didn't, however, feel that that was the end.  I have just known that something else, in addition to POTS, is wrong.  The treatment the doctors as mayo gave me has not worked and their prognosis of when I would get better has been proven wrong.  That has reinforced my thoughts that something else is wrong.  I am confident that I will get a definitive diagnosis at my appt. on March 1st. 

Having a definitive diagnosis means a lot to me.  Even if there is no cure or even a reliable treatment, I will be so happy to know what exactly I'm dealing with.  I can, therefore, do research myself on treatments, raise awareness of whatever rare disease I may be dealing with, and/or work on fund-raising for such disease to help find a cure.  These are all important to me.  I am a fighter, but right now I don't know what I'm fighting for (other than the general idea of being healthy) or against.

Last weekend I really enjoyed a weekend away from home with some girlfriends.  I invited my good friends as well as a couple of new friends down to the Lake of the Ozarks for the weekend.  Yes, I know there's snow on the ground and it's freezing outside.  However, we had a blast.  We just stayed inside all weekend playing games, reading, drinking, smoking (if you are the long arm of the law, we were smoking cigarettes, of course) , and laughing.  It was so nice to get away from home, away from the kids, and spend a little time with all of my friends.  I would've really liked to get away from the one thing that causes me so much stress, my illness.  But, alas, (yes, I said alas) that is not possible. 

The one thing I hated about the weekend... KU lost to Texas!  Their first loss of the season and it had to be when I was watching it with a bunch of crappy ass MU fans.  At least I had two of my fellow KU alumni there.  But listening to the others was excruciating.  Maybe that's why my head hurt so bad on Sunday.  And just because I feel like it...  
Take that!

Because I can't take a vacation from my illness, I was miserable on Sunday and Monday.  I was in tears both days because my pain and muscle weakness were so awful.  However, it was worth it.  I only wish I could laugh that much more often.

My problem now is that I don't have anything to keep my mind off of the countdown to March 1st and/or Spring.  If I'm having a good day, it's not so bad.  However, on Monday, when I was in bed all day in excruciating head and leg pain, I didn't think there was any way in hell I could wait until March 1st. 

On another note, I absolutely HATE winter!  I hate that it's cloudy all the time.  I hate the cold.  I hate having to get bundled up just to walk out the front door for two seconds.  I hate having to drive in snow and ice.  So, what I'm trying to say is that I'm not very fond of winter.  I almost always have problems with depression in late Jan. and early Feb.  So, since I have problems emotionally dealing with my illness, and it's late Jan., almost early Feb., someone please make sure there aren't any sharp knives in my house.  (Okay, that was a joke.  No one call the police to have them take me away in a straight jacket.  I am not really going to harm myself.  I might harm my pre-teen, but not myself.)

I think I'm going to add another countdown to my blog.  A countdown to Spring.  I would add a countdown to my sanity, but I don't know if that's possible (my sanity, that is).

I have plenty more to discuss, but I will save until next time.  I don't want to bore you all too much. 

Gotta love the hair!!!  Now that's hot!


Bibliotekaren said...


I've lurked around here a bit. Am coming out to wish you the absolute best with your follow-up appointment.

I've been on a three and a half year diagnostic journey for a syndrome with some similarities to yours. Many labels have been bandied about -- MS spectrum, autoimmune labels of connective tissue disease or lupus-like illness with neuro aspects, CFS, anxious woman, etc. None of them really fit. As an aside, one of my docs refers to my Mayo trip as the "Mayo debacle."

Am anxiously awaiting to hear if I'm accepted for an appointment with a neurometabolic / mitochondrial specialist in Texas. That's been a long process that started in July when I first suggested him to my Primary.

I completely get the importance of a diagnosis for so many reasons. Although the MS Neuro I saw in said I shouldn't try -- science had not caught up with folks like me. But for all the reasons you listed, I will continue. Especially as my condition changes and progresses. Not sure if you've seen the Dr. Pam Johnson video from UMDF. I find it quite powerful.

Again, hope you get some answers.


Robin said...


Thank you for reading and for your supportive comment. I am so sorry you are having to go through this very frustrating journey. I have only been searching for a diagnosis for about a year and a half so I can't imagine the frustration of still not having a definitive diagnosis.
The doctor I'm seeing in Atlanta is also a neurometabolic / mito specialist (in case you hadn't read that in a previous post). He was excellent. Let me know if you need his contact info.

I agree that you should definitely continue trying to get a diagnosis. The doctor that told you not to try is an idiot, as well as the doctor who gave you the diagnosis of "anxious woman".

Thank you for sharing that video. She is actually from the Kansas City area like myself. I completely agree with the statement she made about how frustrating it would be for someone without any medical knowledge to go through this. I am not a physician, but my knowledge and connections as a RN has definitely helped.
I wish you the best and hope you get answers soon.


Bibliotekaren said...


I actually was following your blog because you were seeing Dr. Schoffner. He was on the list of mito docs that my Primary and I went over. I think his web site made her eyes spin back in her head!

If someone would have told me a story similar to my journey prior to me going through it, I would have arrogantly thought that I could do better. I'm logically detailed in follow-through, persistent and have a degree in OT -- so some A&P. But alas, not so. Of course, the craniotomy in the middle of the journey definitely complicated things.

In any case I'm counting down the days with you and looking forward to you getting a diagnosis too!

Glad to have "met" you. Take good care.