On Looking At My Calendar For Next Week

This week I have 3 medical appointments, or 3 “heavy” appointments as I refer to them.  I looked at my planner and realized this upcoming week is one I have dreaded for a while.

I have appointments with:  my neurosurgeon to check the neck CT angiogram; my neurologist to check the abnormal EEG; and my endocrinologist (who, among other things, needs to check my Vitamin D levels and quit messing with them.  Personally, I want my Vitamin D level to be as high as possible!)  This is life with Cowden’s Syndrome.  There are so many emotions tied with the neuro appointments.  Fear, loss, weakness, etc.  The endocrinologist appointment doesn’t evoke so many raw emotions from me,  just more exhaustion than anything else.  This thyroid, endocrine nightmare is never-ending and seems to always be changing!

I will write about this; however, I realized how many others things I need to write about.  Not to complain, just to document living my life with 2 rare diseases:

  1. Meeting my new-friend-who-is-living-with-Cowden-Syndrome-also-that-lives-relatively-close-to-me for lunch a few months ago and going to the wrong Thai restaurant  🙂
  2. The day of the first CT angiogram and EEG appointments (They were back to back.  Not fun.)
  3. The appointments I had the last month with both neuro docs.  How I felt doing the neuro tests in the exam room; deep, heavy, emotions from the core of my being
  4. Received a compliment from a colleague about how I am “meant to be a teacher”
  5. Almost religiously that I watch “Big Bang Theory” before I go to bed
  6. I sleep with an Ellen eye mask
  7. At lunch today with my nephews and mom we each got a straw that had our favorite color (yellow, blue, and green)
  8. The huge privacy breach I witnessed at one of my doctor appointments last week.  THIS ONE FOR SURE will be written about!

So, life is what happens when I am trying to keep up an active blog.  The above things are very important to me and they need to be written.  The “heavy” things need to be written so that I can leave them here and then go on about my life.   Writing is therapy and there is a reason why I still write.  I may not know that reason for many, many years, but I do know my voice has meaning.   Thank you to all of you who are with me.


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