Showing posts with label shoulder. Show all posts
Showing posts with label shoulder. Show all posts

Wednesday, September 28, 2011

Pop goes my shoulder...

My right shoulder dislocated. This wasn't the first time, but it was definitely the worst, thus far. It popped out while I was crutching (at PT) and I was able to reduce it immediately. However, it slid right back out and just hung at my side. I definitely think that was a sign that I need to start walking. Cam worked on some nerve release pressure points but there was no change. I talked to Dr. Shiple (he was at the Excel location today) and he reduced it--again. He told me to wear a sling, at least until my appointment next week. If it gets worse I have to see him tomorrow to check for nerve damage. It's possible I stretched a nerve when it dislocated. With EDS my nerves are already weaker than 'normal'.

I currently can't feel my shoulder and I get shooting tingling pains in my finger when I move it. I feels like my arm is no longer attached. I can't use my right arm to crutch, which complicates everything. I am not ready to move down to one crutch, but I don't really have a choice. To say it feels weak would be an understatement. It's pretty much dead...which in fact is actually a medical diagnosis--"dead arm." The term is often heard with pitchers in MLB. It is typically caused by instability--namely dislocations and/or recurrent subluxations. "Dead arm" does not go away on it's own---it requires surgery.

Good news it's that I was already planning on having surgery next summer (sad that this is actually good news) and my left shoulder was discharged from PT today!

Cam said that Thursday will be our "learn how to walk" day---that should be "fun." Both of my hips have been really painful lately. The pain in my left hip is likely due to acting as the sole weight bearing leg for awhile. My right hip pain is related to the tears I have in my rectus femoris and iliopsoas. I see Dr. Shiple next week for a dextrose epidural. If I am able to get numb, then I will try PRP for the tears. Otherwise, I am very reluctant to go ahead with PRP treatments with no local anesthetic. PRP is really my only option at this point.

I came across this excerpt from an EDS patient--I don't know the original author---very true!

"I know I look healthy, but just walking across the room feels like a marathon and going anywhere outside of my house feelings like climbing a mountain. I get tired more easily than most people."

Both of my knees have been killing me lately. I don't know if the change in weather has anything to do with it but they hurt all the time. Thankfully I have not experienced any subluxations/dislocations since receiving my new knee brace (Bledsoe 20.50). I still have not scheduled my surgeries for this December and I am getting very frustrated. I need to give my professors enough notice if I need to take any of my finals early. Fingers crossed we have the dates by the end of this week.

My kidney infection is FINALLY starting to get better. I switched antibiotics because Cipro wasn't working and I am hoping to notice more improvements soon.  I still need to have an ultrasound to make sure nothing else is going on but I expect to be kidney infection free by this weekend.

There aren't enough hours in the day for 5 classes + the homework that comes with them, physical therapy (which takes me 3+ hrs), appointments, and managing pain and dislocations. I am exhausted and in a lot of pain.

Oh, and I am sick of being brunette and have decided to go back to being a blonde!

Friday, August 5, 2011

Humpty Dumpty

I've been feeling a lot more like Humpty Dumpty these days---well really for the last 2 years but more so lately. Somedays I feel like I will never be "put back together"---and the reality is I won't ever be "healed." I have surgery to correct one joint/problem and then something else dislocates. Even the joints I have already "fixed" will need more "fixing" in the future. It's a never ending cycle of surgeries and recoveries. It's frustrating because there are so many things I want to do but find I am unable to or I just end up injuring something else.

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. 

US National TOPs Team
1999

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.

BBQ night
(yes I went dark...I am now a brunette)