Opening Up Part 1

Greg and I are away for a few days for our 16^th anniversary without the kids.  It has given me some much needed time to think, pray and process all that life has thrown our way recently.  One of the things I have done is read over some of my old journaling, including our blog.  The blog that I have not written on in over 3 years.  Yes, I started it to keep friends and family updated on our adoption.  So it makes sense that it went dormant.  But there were many times that I wanted to write and couldn’t.  Life has just been to busy.  There is so much to say, where would I even start.  And I feel awkward because what I want to write about isn’t about adoption or Compassion.  It’s about me.  How narcissistic is that?!

Those who know me know that I’ll tell you anything that is going on with me in person.  But putting it on face book or blogs just feels weird too me.  However, writing has always been therapeutic for me.  (Didn’t say I was good at it, just said it was therapeutic.)  And I am encouraged to speak out because awareness needs to be raised for what I and my family are going through.

Life has changed in so many ways.  For starters, my babies aren’t babies anymore (sob).  So our days are no longer filled with swinging in the backyard and playing on the floor.  We homeschool.  For many reasons it is just the best fit for our family currently.  Secondly, one of my kids has a multitude of health issues.  Between work, homeschool, therapies and doctor appointments I had a completely full plate.  But I was so confident and joyous.  God had worked so mightily. (He’d even saved me from melanoma.  But that’s another story.)  As I’d written on this blog before we fully planned to adopt again.  I had big plans for what I was going to do with my life.  Yes, I had even blogged about God’s plan always being best, but I still had MY plan.

And then dysautonomia struck.  Don’t know what that is?  How about this, POTS (Postural Orthostatic Tachycardia Syndrome).  Still nothing?  Don’t feel bad.  Spell check doesn’t even recognize it.  I’d say about 90-95% of the people in the medical community that I have talked to have never even heard of it.  I’m a PT and Greg is a PA and you could include us in that statistic until I was diagnosed.  We were clueless as to what it was. 

Dysautonomia just means malfunction of the autonomic nervous system.  The ANS controls pretty much everything you don’t think about, your organs, heart rate, blood pressure etc…  POTS is due to dysautonomia.  Quality of life with POTS is compared to living with Congestive Heart Failure or COPD.  In my case they believe that my blood vessels do not constrict when I stand like they do in normal people.  So my blood actually follows the law of gravity dropping into the lower half of my body.  When I stand up my heart rate goes from 60 (being paced by my pacemaker that I have thanks to dysautonomia) to anywhere from 120 to 165 beats per minute.  It does this in an effort to get the blood back to my heart and brain. It takes 3 times the amount of energy for someone with POTS to stand as it does for a healthy person.  This causes a lot of crazy symptoms.

• Dizziness
• Fatigue
• Migraines
• Ringing in ears
• Light, noise and motion intolerance
• Nausea
• Right sided weakness
• Imbalance
• Slurred speech
• Pain in legs, back and neck
• Blurred vision
• Numbness, tingling, cramping of hands, feet, legs, and arms
• Inability to sweat, causing inability to regulate your own body temperature
• Sick sinus syndrome requiring the need for a pacemaker

It was quite a process to find out what I had.  So many doctors.  So many tests.  No one really knew.  They thought I might have Meniere’s Disease, MS, ALS, strokes.  They threw out a lot of scary stuff that fortunately I did not have, but I have the symptoms.  The most insulting was a neurologist who didn’t have a clue, so he told me that I just needed to learn to deal with my anxiety.  When I told him I had no history of anxiety, he said it didn’t matter, that sometimes anxiety presents suddenly and causes stroke like symptoms.

So my point is that the medical field, and the public in general needs to be made aware.  Fortunately I did eventually get referred to a doctor who is very knowledgeable about POTS and he has been my lifesaver.  Thank you God!  I would not be functioning right now if not for the right diagnosis and the right treatment.  I know a lot of medical people, so please, take some time to research it.  It’s not that rare, it’s just rarely diagnosed!   Here is a good link to get you started.  http://dinet.org/index.php/information-resources/pots-place/pots-overview

I will write more soon about how POTS effects our daily lives.