4th of July & CRPS

I was off today from my pain program. I have a worse pain level today, the leg increase is from the run..but not positive why my shoulder is above it's base line pain. :/ luckily i'm starting to feel a little more in control of it and know it'll pass. Now i just have to figure out how to keep getting better so my form of pacing will actually match the college life i want to live.

 I had some fun, had some descent pain but the family was pretty good about distracting me. Unfortunately the 104 degree weather was not helping distract me at all. But we were able to get fun in, just felt bad bc i was lagging down everyone having to stop for breaks etc..

Ace (Siobhan) and i did get to go spend some of our gift cards at the gap here, that was fun bc we could actually buy stuff hahah. Then we went to the black hawks store..Of course! HAWK PRIDE.

We came back for a break, i lied down and did some exercises. then we had subway here at the Mcdonald kitchen and then headed out for a boat tour. It was soo darn hot but the boat tour was cool. we were able to see the city from a different view. Check out Dans pictures on fb when he puts them on. They are epic..or at least the view was, hopefully the camera caught it!

NOW I WOULD like to DESCRIBE to everyone more about my nerve condition, Complex Regional PAin Syndrome, i avoided talking about it because it is one of the most mysterious diseases and..lets be honest i just used to not want to talk about it.


CRPS or RSD is a when your nerves go haywire and send pain signals constantly to the brain. Now this is because my SNS is on high alert so it percieves every little thing as a threat to the body. I used to cry in car rides beacuse of the bumps, touch still hurts but has gotten much better I used to not be able to put my foot on the ground without crying and severe pain for the rest of the day. There is no cure for CRPS but they are working on being able to make patients life's better and sometimes remission :)


They don't know what exactly causes CRPS but it does often occur after an injury, mine was shin splints. Symtoms include burning, swelling, contraction of blood vessels, changes in the color of skin, stiff joints, and clearly the pain. The pain is always there for me but we have gotten to the point where the physical signs are not present 24/7  anymore. With this I constantly have pain, I have a base line pain level every day and every moment and then it can be worse some days or a bit better.  We are currently working on how to almost retrain the brain to ignore those pain signals send, as well as how to avoid/bring down flare ups and to increase mobility/function.  Now that is a super short summary there, so if you have questions feel free to ask. And if you don't know my personal story don't be shy to talk about it.


Y'all are wonderful!! Have a wonderful 4th where ever you are.
Peace, E or (Erie for Vonny)