Notes to EDS Patients having this surgery

 Here are a few things to know ahead of time:

1) you will have to go off of your NSAID or Celebrex for 3 months postop. I had zero idea how much my daily Celebrex was helping until I did not have it. Every joint hurts.  Especially those more prone to dislocation. 
2) You will have really shitty days post op (especially immediately postop) but I had way more weeping days from pain prior to the surgery.  (It was daily hell) BUT I think what I am learning now at one month as I ebb off the anti inflammatories that all of those previous joint issues are clearly present.
3) ALso; I need to let people know, because I am pretty positive overall and that I tend to be hopeful, that this is NOT how I am EVERY DAY.  I am no fakey “all is well when it is clearly NOT”  type person. Over the years with EDS I have been in despair many times. BUT  I am lucky that I have excellent support systems and so many lovely people in my life, and those that will help me get through the hard times.  For example today there was a new set of rain squalls therefore more joint pain, my ankle had gone out of alignment in the night so I could barely limp to the bathroom, and two of my ribs went out so that I could barely breathe without hitching each breath. I have many muscle spasms behind my ears and down from my neck into my shoulders, back and chest. Phil had to try to push my ribs back in with all our usual procedures and our little balls and my roller.  But this day has sucked bad.   I could barely walk .3 miles b/c my neck and shoulders were so painful as I tried to walk.  
It will be better tomorrow I am sure, but just so you EDS patients know, I am not a high bar of perfection to try to reach ok? Days can be so bad and often my main strategy is to try to sit back and hope tomorrow or the next day might relieve the current status….OR I can get an appointment with a PT, massage therapist, or chiropractor.  
Ok? Just so you know I am making progress but it is not a straight line going up to a new level of nirvana! 

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