Sunday, March 19, 2017

More questions, but we are getting there...

Thought I would post a quick update of my appointment with the specialist at the teaching hospital in a nearby state that I have sought medical care from.

Last Friday was my follow up, and I ended up spending over 3 hours in the G&I clinic.  So, what we know at this point from all the invasive and intensive testing I have had performed is as follows:

  • Part of my issues came from birth.  I was born with them since I have had severe GI issues my entire life that were never caught or addressed.  
  • Part of my issues come from the surgery to save my life in 2013.  Could not be helped with the damage the tumor did.  I am very lucky to not have a permanent colostomy or ileostomy.  
  • Crohn's is looking more and more unlikely.  
  • They are now chasing down a definitive confirmation of a diagnosis of EDS (Ehlers-Danlos Syndrome) or MS since something definitely major/autoimmune is happening.  I had a crapload of labs done, and a cancer panel is being run as part of the search to determine the autoimmune issue.  
  • The fact that I have Raynauld's and other smaller autoimmune issues point to a larger one.  Lupus has been ruled out previously, but they are testing for it again.  
  • They are already starting the process for me to see the EDS specialist, not a fellow, so I am on the list.  Seems they think this is it and is more than just stretchy skin and joint hypermobility with me.  
  • The ovary issue is still in play.  There remains a grapefruit or a bit larger pocket of fluid in scar tissue that has now been there since whatever ruptured on my sole remaining ovary last May.  I am being referred back to Gyn to develop a plan to have it potentially removed via a cannula.  (OUCH) and to determine that happens next with the Lone Ranger (ovary).  
Getting older is not quite the trip into hilarity I thought it would be, and quite bluntly, I am the age my father was when he passed away, and I realize how truly young that is.  If this is the price I pay to have survived 2013, I accept it. I remain firm in my belief that life is meant to be lived a full volume.  The bloating that I experience (losing and gaining as much as 13 pounds in a day) and the exhaustion may be what I deal with from here on out.  I will work to continue to be the healthiest person I can be.  I will be thoughtful (but not obsessive) about what I put in my body, and I will continue my fitness goal.  I plan on a 26.2 mile race this year, and possibly, a 50K shortly after.  I have an obstacle race scheduled for July, and I will take no prisoners.

Nothing will get in my way.  Not even me.  I have resumed crosstraining more as I got into the bad habit of 'just running'.  I am in pretty good shape, but I can do better.  Been eating more sugar and junk than I should, and have lapsed into eating animal based products from time to time.  Animal protein seems to not be my friend with whatever is happening.  Nor is sugar.  Everything in moderation... even moderation... to paraphrase Julia Child.  

The biggest thing I have to get in balance is work- life balance.  That is my addiction... My coping mechanism.  I will beat this too.  I do not want to die in harness a workaholic.  Small steps.

Hope everyone is having a great weekend.  I am planning a long run and a bit of lifting, then I sadly have to have my face shoved in my computer for most of the remainder of the day.  Looking forward to vacation this fall. 

Thank you for reading!


  1. In this season of rebirth and renewal, I'm sending you healing thoughts.

  2. Replies
    1. Thank you so much! Hanging in there! How are things with you?

  3. Hoping everything is well with you, Lisabeth.

    1. Thank you ! Busy time and a bit rough health wise, but overall doing well. Just continuing to plod along to an answer, I hope! Thank you so much!!!