A New Year..A New Body

The New Year is fast approaching so I thought I'd reflect on this past year and what it has meant! 2010 has been a life-changing year!

-It meant taking the year off from college in order to have (3) surgeries and recover.

-It meant discovering that I have Ehlers Danlos Syndrome and the realization that it is incurable.

-It meant painful PT sessions with Cam, with the goal of being pain-free by the years end!

-It meant falling over a dog gate..thank you gymnastics for the coordination!

-It meant having over 200+ injections in my knee/hip/shoulder.

-It meant many MRIs and x-rays and crossing fingers that nothing else was torn or out of place!

-It meant many trips to Boston to see surgeons and specialists..never leaving the hospital without the understanding that I needed another surgery!

-It meant waking up every morning with one question..."Which/what joint(s) am I going to have to deal with today?"

-It meant not being able to walk (unaided) for 8+ months!

-It meant experiencing the worst migraine headache times a million and not being able to lift my head off the bed for a week!

-It meant a lot of painful times, but a lot of joyous times as well.

-It meant finding a fantastic support group (Hip Chicks) with wonderful women who understand what it's like to live in chronic pain from disabling hip conditions!

-It meant a trip to Florida to see the Rascal Flatts concert with my best friends!!

-It meant reconnecting with an old friend, who would prove to be very supportive through this whole process.

-It meant a trip to the Poconos to relax and have a "mini vacation."

-It meant welcoming 2 beautiful puppies into our family--Mick and Roo!

-It meant deciding to "conquer" EDS rather than use the diagnosis as a shield.

-It meant learning more about myself and what I am capable of.

-It meant understanding what the power of positive thinking can do to your overall outlook when things aren't going your way.

-It meant having a sense of humor about my situation and learning that laughter is a very powerful tool in the process of recovery!

-It meant realizing that even though my own situation is not ideal, there's always someone else who is worse off--God Bless them!

-It meant helping others who are struggling or need advice.

-It meant realizing that I am so fortunate to have a fantastic support system-my family, my friends, Dr. Shiple, Cam and everyone at Excel, my surgeons in Boston, and of course all of my Hip Chicks...Thank you!

..but most importantly

-It meant truly "Living" with Ehlers Danlos Syndrome--something that will remain true for the rest of my life..because that's how I choose to live!

I may not be free of pain just yet, but it is a goal I have set for myself for 2011! So here's to taking a positive step in that direction...one (very small) step at a time ; )! Overall, I hope that 2011 will be a healthier and happier year for everyone!

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Torn again!

I had an appointment with Dr. Shiple on Tuesday for injections (60) and an ultrasound to check the surgery site and some other areas on my knee that have been swollen and painful. The injections are the same ones I had before surgery that didn't work. The hope is that now that the injury (torn MPFL ligament) is fixed, my nerves will respond well to the injections! Too soon to tell just yet! The ultrasound was interesting. Good news is the surgery site (cadaver tendon and screws) look great with no damage. However, it wasn't the most comfortable ultrasound--the sound waves were bouncing off of my screws and causing shockwave-like pains in my knee! The bad news is that the pain in the front of my knee that radiates down my shin is actually a torn patellar tendon--the tendon in the front of the knee that stops the patella from sliding up into the thigh. Thankfully it isn't completely torn and the rehab is very similar to what I am already doing--therapy and immobilization. However, I seem to notice the pain more now and will have to tell my surgeon next time we talk! I have also been seeing my chiropractor several times a week. My back was completely out of alignment and I was experiencing major muscle spasms. The treatments seem to work for a couple of days and then I slowly shift out of alignment again. Hopefully we can get ahead of it!

My family from Alabama is here! I am very excited to see them as we don't get to spend time together very often. They will be here for a couple of days and we have some exciting things planned. On New Years Day we have a family reunion. I can't wait to see everyone together!

I am still waiting to hear back from Boston. I expect that my shoulder surgeon has received my operative note! I hope to hear back next week to schedule my surgeries!

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WELCOME BACK!

I LIFTED MY LEG ALL BY MYSELF TODAY! WELCOME BACK QUAD...IT'S ABOUT TIME!

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The Plan-Part 1

We had a very proactive morning. I just got back to the hotel! I was able to see both my hip/knee surgeon and my new shoulder surgeon (thank you to my amazing primary surgeon for bending over backwards..AGAIN..to accommodate us). Every time I visit Children's I have a positive experience and it just reinforces how fortunate I am to have a great team of surgeons and specialists working on my case.

Knee Update-

My surgeon was shocked at how dead my quad is and if it's still not firing in a couple of months we will have to come up with a plan. He said my thigh looks like an astronaut. My knee still won't bend to 90 degrees so I will have to work hard in therapy to reach that flexion goal. PT emphasis will be on quad strength and range of motion (ROM). He was happy with the position and tracking of the kneecap and once I regain quad strength I can start learning how to walk without the brace. Overall the post-op appointment for my knee went well. The surgery was successful in holding my kneecap in place and not allowing it to dislocate laterally (to the outside).

Shoulder Consult-

I saw my new shoulder surgeon for my shoulder consult. He did instability tests and reviewed my MRI-arthrogram. We discussed options for surgery. He is pretty sure it will be an open procedure (versus arthroscopic) as this provides more access to the joint capsule. I have a script for PT to work on strengthening the shoulder while we wait for surgery.

My hip surgeon also spoke with my PAO surgeon about having the RPAO and shoulder surgery done close together. My PAO surgeon saw no problem with this, so we are going to try to schedule for sometime in January. There are 2 options right now: 1- have both surgeries done together or 2- have the RPAO first (knowing I will be admitted for about 7 days) and then go back in to fix the shoulder.

They are all going to talk and come up with a plan. I should have a better idea of when these surgeries will take place, after the holidays!

Later today I get to meet up with one of my Hip Chick friends for some shopping and dinner : ) We are flying home tomorrow!

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Back to Boston

My mom and I are flying to Boston tomorrow. I have a post-op appointment with my surgeon for my knee and a consultation for my shoulder with another surgeon. I will update on Friday when I have a plan! I am also meeting up with one of my Hip Chick friends : )

I had my shoulder arthrogram today. It was very painful--as always! I must have explained Ehlers Danlos Syndrome 6 or 7 times to the radiologist and doctor. I have a hard time understanding how someone graduates from med school without even a basic understanding of connective tissue disorders. The doctor who performed the injection told me he was going to "numb" the area with lidocaine. I laughed and explained that I have an insensitivity to the "caine" drugs (lidocaine, novacaine, etc). He told me it would be a lot more uncomfortable (the code word for painful) without a local anesthetic and after explaining several times that it wasn't going to work I just told him he could do it anyway. Even after explaining EDS and the insensitivity he was still shocked when I could feel everything and said that he wouldn't have been able to handle it as well. Thankfully he did manage to get the needle into the joint on the first try, which is a first! My shoulder is extremely sore and lifting it is close to impossible. Hopefully it calms down for my appointment on Friday so that the surgeon can do a proper evaluation without me jumping off the table and dislocating something else.

I also realized the other day that I am going to have a very difficult time sitting in the plane. I can't bend my knee enough to sit normally, so I have to hope that it is not a full flight. Fingers crossed!

Two of my Hip Chick friends are going in for hip surgery this week--Madeline and Mary! If everyone could say a pray that they both have successful surgeries and speedy recoveries that would be great!

"Courage is not defined by those who fought and did not fall, but those who fought, fell, and rose again."

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Costa Rica

Several months ago I ran into a high school friend while shopping. We hadn't seen or spoken to each other since leaving for college, which was unfortunate. However, I believe that everything happens for a reason. We are rekindling our friendship and now we talk all the time. We also have some pretty exciting events planned for 2011. This summer we are going to the Kenny Chesney concert together, which we are both very excited for. She also invited me on a trip to Costa Rica at the end of April. It's a homestay, volunteer trip and should be a wonderful experience.

Given that I am having several surgeries this winter, I hope that I will be far enough along in my recoveries to go. Most people will probably think it's a bit risky and with EDS I would probably be "safer" at home. However, I don't see it that way. I know it will be an enriching experience that I will remember for the rest of my life. Yes, I'd probably be "safer" at home, but I don't live like that. From the moment I was officially diagnosed, I chose to conquer EDS (so to speak). I am not scared of the diagnosis and I most certainly do not live behind it. I know that I will face many challenges in my life--most likely involving more surgeries...so why stop living? I have many goals and EDS will not stop me from pursuing them, just as it will not stop me from living my life and taking a trip to Costa Rica. The trip includes some of Costa Rica's finest attractions, including- a hike through a jungle/forest, relaxing on a beach, learning about the culture and interacting with the locals (speaking in Spanish), and much much more!

Be thankful for the people in your life. We all take different paths, but no matter where we go..we take a little of each other everywhere.

Bob Marley said it best-- "Love the life you live, Live the life you love!"

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MRI Arthrogram

I heard back from Boston last week confirming that I need an MRI-Arthrogram of my left shoulder--I am interested to see how badly my labrum is torn after what I saw on the ultrasound. I have an appointment set up for Tuesday and we fly to Boston on Wednesday.

I am definitely not looking forward to the actual experience of an arthrogram, as I can't say they are comfortable. I have had 2 before--right wrist, left hip--and both times were excruciatingly painful. At least I know that I am going into my appointment with everything I need--as to not waste any time in scheduling surgery.

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Shoulder Surgeon

We heard back from Boston today. Unfortunately I will not be able to see the shoulder surgeon during my appointment with my hip surgeon on December 16th. Instead, I will see the shoulder surgeon on the 17th. Hopefully my hip surgeon will be able to stop in during that appointment. At least we are able to fit everything in during our trip.

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