This pretty much sums it up.  Honestly, the first thing I thought of when I watched this, was “Welcome to my world.”  Out of all the videos I have watched and things I have read, this one has rang the most true for me…And she talks about struggling with POTS as well. I love, love, love that she is working towards a marathon.  Makes me wish I could hug her.

It turns out the third time WAS the charm.  I finally had my first round of prolotherapy yesterday.  Going into it I had no clue what to expect except that people kept saying I would be in pain.  They weren’t lying. 


We got to the office and the nurse came and took my vitals.  Dr. Cantieri came in and we talked about what would happen, and he asked if I had questions.  Of course I did.  He answered everything like I will be using the Testosterone cream for probably about 8 weeks to help my body heal, I need to come back in three weeks for round 2, that I should not get discouraged if I do not feel much different after the first treatment….Dr. Cantieri explained that it is usually after the second treatment that I would be able to tell if the prolotherapy was making a difference. 

1.  Medical Stuff:
I had two sessions of PT.  
Bought special gloves to use to help put on my compression stockings.
A lot of exercises were done at home.
I rescheduled and rescheduled again prolotherapy for Monday.
I had blood work to test my potassium since Florinef can deplete potassium.  My potassium was normal but my glucose was low.

My body hurts…

and not because of prolotherapy. 

I realized I never updated my blog after having to reschedule AGAIN.  24 hours before I was supposed to have prolo, it was still blizzarding.  I looked up Mishawaka’s news channels, and the city was under a state of emergency and the whole city was asked not to drive.  Since I knew I had to give 24 hours notice for cancellations, I called and left a message asking what my options were. A little while later the lady who does the scheduling called from her home because the office was shut down and said I could come Monday at 1:00 instead.  I tried really, really, REALLY hard for Friday but no such luck.  So I will now have prolo on Monday…if the stars are aligned. 

Let me just say that I am realizing that Ehlers Danlos and POTS are such weird disorders.  There is so much inconsistency with how they affect me day to day.  Last week was such a better week for me.  I didn’t need my cervical collar as much, it felt like my meds were really doing a good job controlling the POTS, and I was able to rehab with much more stamina. Then Sunday and Monday came and POTS and EDS decided to hit me like a ton of bricks.  My joints felt so loose and I had to use my wheelchair again.  Sigh.

I keep saying I just don’t understand these disorders.  I have kept journal after journal trying to pinpoint patterns so I can try and predict good days and not so good days.  So far these are a few of the patterns I have been able to find…