Thursday, May 16, 2013

Ooops... so it's been 8 months.

So apparently building a home takes up a lot of your time...
It has been a whopping 8 months since I let anyone know how I was doing and I thought it was about time!  Thank you for all of you who have been so sweet to check in on me. 

First off, the house is done and we're moved in!  YeeHaw!  Holy hell was that a production, but we made it, and we're here and loving our new home.  I'll love it even more in a month or so when the yard and landscaping are complete.

I have also since started an in-home part-time job that I love.  The Crafty Collaborative is going great and growing fast!  Rosie is terrific, and we're in the process of searching for a new pup to join our family.  Life has been good.

Not so good though, is how I have been feeling.  Although I tough it out as much as I can, I have been feeling generally pretty crappy since about this time last year. 

Most of this, I believe is due to my fibro, which is commonly aggravated by stress (good or bad), however in more recent months I have been experiencing more weakness in my upper arms.  I have also noticed a couple more Gottron's Papules on my hands, as well as shortness of breath.  This makes me more concerned about where my DM is at, so I have been working super closely with my Rheumatologist to monitor blood work and keep an eye on signs and symptoms.

My regular doctor and I have increased my Neurontin dosage to 300 mg, 3 times a day to attempt to control the fibro symptoms.  I also am working on turning Jay Leno off after the monologue.  Now that is a toughie.  And most definitely after Jimmy Fallon's monologue... Oy vey.

Recent lab work:
No liver, kidney or blood cell count abnormalities.  Muscle enzymes show the normal CK, normal aldolase and a mildly elevated LDH. 
  • CK - A common inflammatory marker for myositis or other muscular skeletal diseases.  Normal is good!
  • Aldolase - Aldolase is an enzyme that is found throughout the body. It is particularly found in large amounts in muscle tissue.  When the muscle tissue is damaged, the cells break open releasing this enzyme into the blood stream.  So, a normal Aldolase count is good!
  • LDH - This test is typically used as a measure of tissue damage in an individual.  Although still elevated, my current LDH is the lowest that it has been since February of 2012.  That's good news!
Next check-up is in July.  We'll decide at that time if a new MRI or other testing is needed depending on how I'm feeling. 

In the meantime, I will be plenty to keep me busy including my new role as a Moderator for the patient support community called Ben's Friends.  I am part of both the Myositis and Fibromyalgia groups and have become a Moderator for the former. 

Although I'm not always feeling super awesome about the changes in my own health, Ben's Friends has certainly changed the relationship that I have with my disease and I feel strongly about the power in connecting with those who face similar challenges.  Sometimes just knowing that you're not alone is the best medicine. 

Just joining the group and seeing that there were other members in it was a huge sense of relief to me.  Increasing my contribution to Ben's Friends is a way to return the favor.

Patients and their friends and families are all welcome, so if you have an interest in connecting with those who may be facing similar challenges with their health, or have similar questions and concerns please join and spread the word!

Thank you for checking in on me! 

I'll try an update before another 8 months has passed.  How's that for commitment?! 

All my best,



  1. wow Maren, thanks so much for the kind words on Ben's Friends. I'm the co-founder. I actually reblogged your post here:

    also, in your post where you talk about Myositis and Fibro, if you can link to the actual networks address (for example: - this will help people find the networks through Google :()

    1. Done and done! Thanks for the note Scott, and for sharing my post on the Ben's Friends blog!
      Also - nice job on your goodcausetv interview! Lots of great info!
      Thank you for all that you do!