I leave tomorrow to head up to Boston! My dad and I will be staying with my aunt and uncle (like always). On Monday I have my pre-op appointment with my surgeon and pain clinic appointment. I should have a better idea of what will be done during surgery and what to expect for recovery. I am also hoping to have a plan for my CRPS/RSD as the hypersensitivity and flare ups are still bad. I will post an update after my appointments.
On Thursday I have my post-op appointments with both hip surgeons! I will also discuss my right knee situation to see if we can come up with a plan on how to prevent my kneecap from dislocating and stop my fibula from slipping out of place. My mom will switch places with my dad on Thursday. Friday (May 6th) is my shoulder surgery.
I had a great week with Marena! It was a lot of fun. We went to the Disney store, got pedicures, ate at my favorite pizza place- Big Cheese, went out to dinner, watched The Lion King movies, and listened to Goodnight Moon!
Funny story: My friend Emma had her hip scope with my surgeon on Friday (she has hip instability and Ehlers Danlos Syndrome). When my hip surgeon went to check up on her she mentioned that she had been texting me earlier that day. He asked to reply and when she realized he was being serious she gave him the phone. Yes, I received a text message from my surgeon. Probably one of the funniest, most unexpected moments ever but that is why I love my team of doctors and Children's Hospital of Boston!
GO BRUINS! 7-3 victory over the Flyers!
Celtics game tomorrow!
...it'll be great to watch the Bruins and Celtics games while IN BOSTON!
hey so I have been reading your blog for a little when I was doing research for my knee. I actually have EDS and had my mpfl surgery with dr. yen because of reading your blog. I live in the Boston area. I figured I'd say something and wish you good luck with everything!
ReplyDeleteThank you Steph!
ReplyDeleteHow did your surgery go? How's the recovery?
The actual surgery went really well but now the pt is killing me lol. I'll be 5 weeks out on Tuesday and getting to 70 degrees is like torture! haha I hope your surgery goes well, I've had two shoulder surgeries and I bet you'll do fine after having so many other surgeries. good luck.
ReplyDeleteFlexion is definitely torture! I can totally relate to that! Thanks! I had shoulder surgery in 2007 and it wasn't horrible..this one will be an open procedure!
ReplyDeleteGood luck with recovery and PT!
Thanks for starting this blog. I felt all alone, (other than my mom & family having this) I call it infected because it's something NOT DESIRED, WANTED, & wouldn't wish on anyone. Unfortunately my 11 year old son has it bc I passed it to him. My maternal grandfthers side of the family had Ehlers Danlos type 2. Which is hypermobility of the joints. Interesting circus & fair stories of Houdini Acts, Woman beig stabbed in Box trick, & neat stories have been passed generation to generation. My fborite is my great grandfather preacher Paul cox that had a problem with alcohol and would travel from Athens Georgia to Atlana Georgia, dislocate himself, collect change (while dislocated), then put himself back in place & go get drunk!!! LOL you have to have a morbid sense of humor with this bc personally its a hard thing to try and do normal things & then BAM, all of this sudden you have a HOLE where there ain't supposed to be a hole!!!! So forgive me if I offended. But ppl like us are in a huge predicament because I can't work, I can't get disability, I can't get health insurance of any kind to cover it without it being a pre-existing condition. I will be 30 Jan 8th 2012 and I have severe athritis & chronic back pain. Degenerative bone disease has been the outcome for all the grandparents and mother on my side so looking forward to that (if it ain't already happening) bc I have not seen a dr in 11 yrs. My husband now doesn't understand it, or the pain, bc he was surrounded by rough tough football players & to be quite frank .... I'm a pussy when it comes to pain. He is the only thing stopping me from going to a doctor. That and $
ReplyDeleteBut thank you for making this blog and trying to strike up awareness & I'm behind u 100%!!!! will repost your May is Elhers Awareness month! I'll keep checking your blog and hope your knee is well. Thanks again ;)