Back to School...

...back to school, to prove to dad that I'm not a fool.

Lately, I have been really overwhelmed and stressed with everything in my life. On top of the recent setback with my hips, and ongoing pain and dislocations in my knees, I am starting back at school this week for the first time in a year and a half (*for those of you who don't know--I took a year and a half off of school for various surgeries*). While I am mentally ready to get back into the swing of things and have a structured schedule, I am not physically ready...at all. It's frustrating that I am still not physically stable or mobile after spending the last 2 years stabilizing joints--oh, the joys of EDS. I have, however, run out of time and can no longer withdraw or take a leave of absence. I think the fact that I no longer have a safety net (leave of absence, withdrawal), is what's making this semester seem even more overwhelming. I have been "stuck" in the same routine/schedule for the last 2 years--surgery, recovery, PT, Boston, repeat--a schedule no one wants--but one I have become accustomed to. While I am glad my next two surgeries aren't for another 4 months, I am concerned about my physical capabilities on a college campus. The commute is about an hour each way and I will be a full time student---taking 5 classes. I am also worried about recovering from 2 major reconstructive surgeries this December, knowing that I will also be a full time student in the spring.  It's a lot less stressful and reassuring when you don't have a time restriction for recovery. Thankfully, I don't have to worry about that for a couple of months.

Due to Hurricane Irene and the flooding and power outages experienced in our area, the first day of classes was cancelled and moved to Tuesday. I don't have any classes on Tuesday, so my first day of school is Wednesday. I have PT three times this week, as usual, and will schedule Hivamat as well. My hip and knee pain have been getting worse. If I don't notice any improvements or changes in the next few weeks, I will e-mail my surgeons to see what the next step is. We will also be contacting Boston soon to schedule my right knee and ankle surgeries for December (after finals). It's going to be a long and tiring week...and I only have 3 days of classes. I am, however, very excited to see Shane this weekend in Rhode Island. My mom and I are traveling to Bryant to see his first games of the season!

I will be meeting with the disabilities director of Saint Joe's this week to discuss my limitations and see what accommodations can be made. The good news is, my classes are only in 2 buildings--which are located next to each other. I can park right outside of the buildings in the handicap spot. That will be a HUGE help.

Tomorrow I will be meeting one of Dr. Shiple's EDS patients for lunch! I am excited to finally meet her and get to know her story. I just hope I can get around the major flooding.

On Friday I picked up my new knee brace--Bledsoe 20.50! So far I love it--as much as you can actually love a brace. It's not as bulky as the previous braces and doesn't cover my skin/knee with fabric. It also helps the kneecap track correctly when going through flexion.

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Faith

Heavenly Father

Walk through my house, and take away all my worries and any illnesses, and please watch over and heal my family and friends. Bring quiet where there is chaos; bring light where there is darkness and put love in our hearts.

Amen

****

So very powerful. For those of you who are struggling--whether it be emotionally or physically--don't forget about the power of prayer, faith, and God. Reach out, pray, and ask for guidance and help! If you don't believe in God and/or you don't believe in prayer...believe in the power of positive [[healing]] energy. Substitute the word "prayer" with "thoughts." You are allowed to ask for assistance and guidance. It does not make you a weaker person. I think it makes you stronger. Releasing anger, stress, and anxiety and allowing someone else to take some of the power and control takes courage and strength!

Today I spoke with a very close friend. Someone who has known me my entire life, and someone I have always been able to talk to. I opened up about my overwhelming stress and pain. She reminded me that I am not alone. I have an amazing support system with my family and friends, doctors/surgeons, therapists, but of course...and perhaps most importantly---God. We talked about faith, prayer, God, and stories about God's presence in our lives. I am a faithful and positive person. I try to see the bright side in situations. Positive energy and faith helps me accept EDS and the impact it has had on my life. I have my moments of self-pity...wishing I didn't have EDS and everything that comes with it. But I don't live everyday like that. 

During my phone conversation I had a God moment. I received an e-mail from someone who is also struggling with EDS--someone I have never met. She told me she prays for me every night and thanked me for my blog. I received this e-mail in the middle of talking about God and prayer. For me that showed God's presence in my life. He reminded me that He is listening and that I am surrounded by loving and caring people. I am not isolated or alone. It truly means a lot to know that there are other people praying for me...and I will absolutely include them in my prayers as well. 

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Earthquake

Today was a little like an earthquake with the news I received...

I saw Dr. Shiple today to discuss my trip to Boston and to have an ultrasound of my groin (psoas and rectus femoris), and right knee (MPFL). Strangely enough all three have something in common--a diagnosis I am way too familiar with. They are all torn. I have a large tear in both my rectus femoris and psoas, and my MPFL ligament has torn away from my kneecap. Unfortunately I don't have many options for the rectus femoris and psoas tears. I will continue with therapy and hopefully my hip returns to a functioning state soon. As for my knee, the ultrasound helped confirm that I should in fact go ahead with knee surgery this December. 

During this appointment we also felt a tremor from the east coast earthquake. As Dr. Shiple pointed out, this would happen during MY appointment. 

Tomorrow is a busy day! I have Hivamat, PT and a Cardiologist appointment. Hopefully no more earthquakes (literally and figuratively). 

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Bahstun

This week was very busy. I had four appointments and we moved Shane into his dorm (he has pre-season for soccer). I am really going to miss him. He's my best friend and it's going to be so weird without him at home. However, I am very happy for him and I know he will do great this semester--academically and athletically. We are traveling to Bryant in 2 weeks for the first games of the season. I can't wait to wear my "Bryant Soccer" t-shirt!

On to the appointments...

This week I received both good and bad news. I saw all of my surgeons and a back specialist. I have several updates so bear with me...

Shoulder Post-Op:
I saw my shoulder surgeon for my 3 month shoulder post-op. He was very happy with my ROM (or lack of in some directions) at this point. I need to continue with physical therapy to strengthen the muscles and work on some more range of motion. We have been very cautious with therapy exercises because my surgeon made a point to say that we need to progress slowly.

Ankle Surgery Discussion:
I also discussed ankle surgery in more detail with my ankle surgeon. He explained what he wants to do and what the recovery will be like. He believes the best option is the Chrisman Snook procedure--a procedure that he really only performs on EDS patients. With this surgery he will create a  tunnel in the fibula and weave a cadaver tendon through it. Then he will screw it to the Talus and Calcaneus bones. The cadaver tendon will essentially replace my useless ATFL (anterior tibiofibular ligament) and CFL (calcaneofibular ligament). I will spend 2 weeks in a soft cast, 4 weeks in a hard cast, and 4-6 weeks in a walking boot. Physical therapy will follow and will be extensive. If you are interested in learning more, I found a case study article-- click here (it is a .pdf--if you have trouble opening .pdf files please e-mail me with the elephant button and I can e-mail the article to you).

Visual of Chrisman Snook 

*We are hoping to schedule for December 16th.

Knee Evaluations/Follow-ups:
I saw my surgeon for my knees. Thankfully my left knee is stable enough to stop wearing the knee brace...for now. However, he explained that because my "Q angle" is still off, I may require an Osteotomy (Tibial Tubercle Transfer surgery) at some point. He anticipates at some point it will stretch back out and I will experience subluxations/dislocations. Now the question is when...

As for the right knee--it's a mess. It's very loose and subluxates frequently. My "Q angle" and "J-curve" are pretty far off the normal range. I have EDS laxity and malalignment in the leg working against my kneecap. Both surgeons feel my best option is an MPFL reconstruction with a TTT Osteotomy (as mentioned above). My hip/knee surgeon wants me to have the surgery a week after (or before) my ankle surgery in December. He is going to check with my ankle surgeon to see if it's reasonable. Having them a week apart means one recovery verses two and it will make it easier for my shoulders. They ordered me a new brace for my knee--Bledsoe 20.50! I should have it by the end of next week.

My new knee brace
Bledsoe 20.50

RPAO/Hip Post-Op:
My PAO surgeon said that my left hip joint space is a little more narrow than my earlier x-rays. It wasn't a huge difference but something that worried him a bit. We will continue to watch it closely and I will have x-rays this spring. Hopefully it doesn't change in 6 months because a PAO is supposed to PREVENT cartilage deterioration--at least for many years.

The right hip (joint wise) looks good and he was happy with the coverage. The bones are completely healed. I will post the x-rays soon. He believes my groin pain is either the psoas or rectus femoris. I will continue PT with Cam for strength and gait training.

Unfortunately the appointment with the back specialist did not work out so we will try to see someone at Children's instead--hopefully during our next visit.

The Children's Hospital of Boston is starting a formal Ehlers Danlos Syndrome center/program. It will be a multidisciplinary program with many different types of specialists. There will be several geneticists, orthopedic surgeons/sports medicine doctors (my primary surgeon is one of the orthopedic surgeons in the program) anesthesiologists, rheumatologists, physical therapists and several other specialties. This is important for me because now all of my specialists will be in one hospital, working together. Because EDS is a whole body disorder it's important to take everything into account when making medical decisions.

I see Dr. Shiple next week and I have a lot to talk to him about. I am hoping to also have an ultrasound of my right MPFL and right rectus femoris and psoas. I will also see Cam for PT.

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EDS Video link

Here is the link to my EDS video---click here

I hope you find it interesting and informational. Please feel free to e-mail me (e-mail button on left hand side of blog) suggestions and/or comments.

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Thumbs Down!

I dislocated my thumb today--using my cane. Seeing as my cane is an important accessory these days, I had to braceit for the time being. This isn't the first time it's dislocated. It usually pops out when I am holding something too heavy. I have no idea what the next step is...nor do I really care at this point. I have way more debilitating problems right now and it's not really a HUGE deal. I probably won't do anything for awhile. Eventually I may have to look into a thumb ring for EDS.....maybe.

If I end up needing a thumb ring it looks like this:

SIRIS Spiral Splint
Silver Ring Splint

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Peaks and Valleys

This week has been difficult for me physically and emotionally. Physically I have been in a lot of pain that seems to be getting worse. Therapy was difficult because of my hip and knees and I really didn't feel like I accomplished anything. My hip pain is likely my angry psoas...again. It's a difficult problem to manage (and it's very painful) but at least it's not joint pain. My knee pain is probably due to overcompensating and having a completely improper gait. My right kneecap subluxates when I don't wear the brace but thankfully, no subluxations or dislocations IN the brace. My left knee just hurts. It's getting very frustrating.

Emotionally I am exhausted. I am so overwhelmed and stressed with my compounding issues and I just desperately need a break. There's only so much that one person can handle before they explode. That's what happened this week. PT is a confusing/conflicting place for me. I love it because the people are great and very supportive--in a way an extended family because I have been in therapy (consistently) for 2 years. However, I hate it because it means more pain, frustration, and setbacks. With increased pain this week, came an increase in emotions. I cried more this week (at PT) than I have in a long time. I saw patients who I interacted with regularly (and became friendly with) being discharged and I wanted so badly for that to be me. Don't get me wrong, I am always happy for them when they "graduate", it just makes me think more about my pain, disability, and life. I just want to be able to wake up and go to bed (when I manage to fall asleep) without pain. I am tired.

During one of my breakdowns (and this was a major one at that), Cam left me with some words to think about. He has a way of knowing exactly what to say. He said that after every [mountain] peak is a valley. The peaks are my high points and progress and the valleys are my setbacks, pain and frustrations. So because I am in a valley right now, a peak must be right around the corner.

....But when do the valleys end? Will they ever end? Right now, I just don't know.

On Monday my family is heading to New England for a busy week. Shane moves into college on Tuesday. This is going to be a rough day! He's my best friend and I can't believe I have to spend the next several months at home without him. I am definitely going to miss him. At least I know I will see him every 6-8 weeks (when I have appointments).

On Tuesday and Thursday I have appointments with my surgeons. I will be seeing all of my surgeons for post-ops and evaluations. I will also be seeing a back specialist to discuss my chronic back pain and instability. I am really in need of some answers.

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EDS National Conference Presentations

For those interested, the EDS National Foundation posted many of the presentations from their annual conference (held in Baltimore, MD).

To download powerpoints and .pdf files-- click here

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EDS Video

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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)

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