I fell down the stairs last week. My knee buckled, gave out and I slipped. This happened 6 days after I stepped in a hole. I am becoming more and more concerned with my left knee and it's inability to function and support me. It hurts all the time and gives out whenever it feels like it. I imagine this is in part due to lack of muscle strength and control--but it's getting very frustrating. Thankfully (and surprisingly) no complete dislocations with the fall--I just subluxated my right kneecap. However, I did hear a "pop" in my right hip and definitely over extended it (not to mention landed on it). My groin pain has been horrible ever since. I am hoping it is just my iliopsoas, which is an annoying problem to deal with...but something that IS manageable. I am, however, concerned that I aggravated the labral tear in my right hip. I will discuss my concerns with my hip surgeons at my post-op appointments in 2 weeks and see what they think.
Recap: I have a labral tear and FAI in my right hip that was noted on an MRI last year. Due to my EDS, my PAO surgeon decided it was best to keep my hip capsule closed (if possible) and not repair the tear--less is more with my body. Re-positioning the socket with the PAO surgery takes the uneven load off of the labrum and typically prevents the need for a scope. (In order to repair the labrum and FAI, the surgeon needs to open the hip capsule. This creates instability--something I can seriously do without).
I have been very frustrated and over-whelmed lately. I have been in therapy for 2 consistent years--the only breaks I have had are for surgery. I feel like I have made zero progress because everything (except my shoulder) hurts all the time. Joints I have been working on for 2 years are still painful. It's just very stressful.
I have so many overlapping problems that it's hard to see the light at the end of the tunnel. I just want so badly to not have this body. I want to go back to my "glory" days of gymnastics, when my body was "unbreakable"---I had the strongest muscles and was so physically fit that my joints just stayed in place. I was able to experience being an athlete (and a talented one at that). I trained everyday for hours. I want to feel that accomplished again. I miss the intense training, and learning new skills. I miss competing. It was my life, it defined me...and slowly EDS took that away.
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| US National TOPs Team 1999 |
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| US National TOPs Team 2000 |
Now I don't even know what it's like to live without pain. Unfortunately I can't change my body and how it has altered my life, so I just have to accept it and make the best of it. I ask you God to give me strength...
God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.
Living one day at a time,
Enjoying one moment at a time,
Accepting hardships as the pathway to peace,
Taking, as He did, this sinful world
as it is, not as I would have it,
Trusting that He will make all things right
if I surrender to His will;
That I may be reasonably happy in this life,
and supremely happy with Him;
Forever in the next.
Amen
My left (operative) shoulder is doing well. I have almost no pain with everyday activities and have a functioning ROM. My surgeon's orders are to take PT very slowly and progress only as noted in the script. My exercises in PT seem very easy to me but I guess that's my sign of some progress.
We head to Boston in 2 weeks to move Shane into college and see all of my surgeons. I am hoping to schedule my right ankle surgery and discuss the procedure with my surgeon. I also need to address my right knee subluxations and instability. Hopefully I haven't reached the surgery stage yet. I will also be meeting with a spine specialist at Mass General. We have a lot to discuss in regards to my spine and SI instability, and chronic back pain. I have been in a tremendous amount of pain in my back and would really like some answers and relief.
I haven't reported on my CRPS nerve pain in awhile. This is because it hasn't been a problem for several months now. Occasionally I have a flare and hypersensitivity, but it's short lived. I can touch my leg without pain and have not had any swelling or discoloration. I am still taking 1800mg of Neurontin a day. I do not feel comfortable weening off just yet because I still experience the occasional flare. CRPS also has a mind of it's own and sometimes all it takes is an injury or trauma to the leg for it to start back up again. I will meet with my pain doctor sometime this fall/winter to discuss the next steps.
I am currently taking heart rate medication (Verapamil) to control arrhythmias. The medication seems to be helping as I am no longer waking up in the middle of the night to my heart pounding out of my chest. I had an echo last week to see if I have any structural problems with my heart. I will discuss the results with my Cardiologist at the end of August and post an update at that time.
On Wednesday I had a BBQ with two of my (newly engaged) best friends--Jamie and Andy! It's always great to spend time with them. We talked for hours, listened to country music, and went in the hot tub. It was an awesome night.
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| BBQ night (yes I went dark...I am now a brunette) |
Hey. I just read your post and I will be praying for you. I hope that you get some answers at your next set of appointments. I slightly understand you missing the ability to challenge your body and master new skills. Although I am only dealing with hip problems, I was a competitive figure skater and was training at the national level until I my hips started acting up. I too miss the ability to do things, pushing your body to you don't know if you can continue on, but you do. Ahh, the good ol' days. Now I limp around. Anywho, just wanted to say that I'll be praying for you and hope that things start to look up for you. Sincerely, HC
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