Tuesday, January 12, 2016

2015 Cautiously Optimistic

"Cautiously Optimistic" It's a little phrase that my dad coined for me one day that I've been running around saying for the past couple years. During physical therapy in Colorado I would get told every now and then that I should be more excited over a milestone being met. My response was always along the lines, "I am VERY excited but I don't want to get too far ahead of myself because I have a track record". (I guess it also doesn't help that I'm the type of person who contains their excitement within.) But to be honest, I don't have a very good track record with these shoulders/shoulder blades of mine staying good for any length of time; because of this, it is very hard to have things going really well where you start thinking of things you might be able to do in X amount of months (ex: drive, school, work) and then one day your body rebels and there is a major setback which nine times out of ten has resulted in surgery. This has happened way too many times and it's a hard bullet to bite. So 'Cautiously Optimistic' is the way I have been approaching things. I am hopeful things will get better. I just don't want to get too far ahead of myself; loss is hard when things don't go according to plan.
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To briefly recap, January 28, 2015 I had surgery in Minnesota by Dr. E to reattach four of my muscles that had detached. Dr. E also stabilized my scapula by using an Achilles tendon allograft (cadaver tissue) and attaching it to multiple spinous processes (back of vertebrae). This was my only option to stabilize my scapula since I wasn't a candidate for a scapular fusion due to my shoulder joint being unstable. I am so grateful that I ended up in Dr. E's care. He's an out of the box thinker and without him I don't know what we would have done for my scapula. Signing consent for this surgery was taking a leap of faith. This surgery had never been done on anyone before and I was giving consent to be the first. Before surgery we knew if someone took their thumb to shove my scapula in towards my spine and held it in this very specific position I gained a lot of motion and my strength improved. The stabilization aspect of the surgery with the graft was to essentially act as somebody's thumb. Knowing this, we were all very hopeful that this surgery would prove to be very beneficial and help restore some function.

Post-op January 28, 2015
It was the hardest recovery process I had ever been through. That recovery
was the first time I ever thought I can't do this and wanted to give up.
Let me tell you, that's an awful feeling. 

It's ridiculously hard when you're in the middle of all the chaos and can't see the light at the end of the tunnel. When you do see improvements though, I can't begin to tell you how exciting that is.

Pictures pretty much sum things up. The surgery has helped a ton.
In all of these pictures I have my elbow bent and I'm pushing the wall. 

On May 20, 2015 my mom and I started the drive out west to beautiful Colorado so I could begin the rehabilitation process with my team of physical therapists for my left scapula. In Fall 2014 they're the ones who figured out how to hold my scapula and I was excited to start working with them again. During one of the many hours in the car with my mom, I remember telling her at one point that I hope we get to meet/communicate with more people. One of the things we've learned over the past several years of traveling is if you talk to anybody long enough, and people are honest/open up to you, you will see that everybody has some sort of obstacle in life that they're trying to overcome.

For the past three years we have always stopped at this tiny restaurant right over the Colorado border called Lucy's; we stumbled upon it accidentally in 2013. Now it has become our go to place for breakfast before we start the drive to Denver. For the past three years we have had the same exact waitress. This year we got to talking and the next thing I knew I was writing down Ehlers-Danlos Syndrome and Marfan's Syndrome on a napkin. It turns out our waitress's son was being evaluated for a suspected connective tissue disorder. It was a small world kind of moment. When our waitress told us what connective tissue disorder her son's doctors were looking into, both my mom and I said, "We know exactly what that is." The look on her face was shock. I am one of those people who believes that there is reason why certain people come into your life; whether it be for 5 minutes or 100 years. Our waitress looked at us and said we're the only ones that she has talked to that has an understanding of what she and her son are going though. There's a lot of times when dealing with these medical things that you feel completely alone and like nobody understands. Speaking for myself, it is an amazing feeling when you DO find somebody that has an understanding of what you're going through.


It wasn't too colorful on May 22nd. It was cold, gray, and rainy but I was
so relieved to be back in Colorado because my body feels so much better
in their climate. 
Where we go for breakfast
When we arrived in Denver the gray clouds were there too making the mountains really difficult to see. I'll admit I was really bummed because I always look forward to watching the sunset behind the Rockies while eating a piece of pie from down the street. I won't complain though. Out of all of our trips to Colorado this was the first time we didn't see the sunset. The next day we drove to our final destination; Vail, CO. Now, what kind of road trip would it be if my mom and I didn't encounter any snow? That's right! It wouldn't be one. Good thing it decided to snow. It made our road trip complete.
Fortunately the snow didn't last the entire drive to Vail. It is very pretty though.

After a long few days of travel we were very much looking forward to getting settled into our condo. We brought some of our belongings in and went back to the car to get some more when all of a sudden my mom shut the door without grabbing the keys. Our keys to get into the condo were on the kitchen table, and you guessed it...we were locked out!! As our luck would have it, this incident occurred on a Sunday when nobody is in the office. As we stared at each other horrified at the fact we just locked ourselves outside there was nothing we could do besides laugh. This was not part of the plan. Fortunately another guest walked out of their condo and let us use their phone because our cellphones were conveniently sitting next to the keys on the kitchen table. We got to talking to Everett and his family and learned they're from Kansas. Everett's daughter was doing physical therapy for her hip. We exchanged numbers and would possibly see them again in a few weeks when they came back for a follow-up appointment.

May 25, 2015: THE BIG DAY!! It was day one of physical therapy. I was so happy to see everybody at the clinic. With as often as I had been at the clinic over the past few years, the staff have become friends. When my physical therapist D came to the lobby to get me I made sure to point out the Blackhawk logo I had painted on my brace (sadly, he's not a Blackhawks fan). When we got back by a table he had me take my brace off. There were two noticeable things with the brace off 1.) my scapula sat in a MUCH better position compared to before surgery and 2.) my muscles had atrophied a ton. There was a big indent from the strap right over my biceps muscle. D had me lay on my back and he took my arm to slowly move it. I didn't say it, but I was so scared to have him move my arm; it was the first time my arm was being moved in four months. As scared as I was, there was instant relief when I immediately noticed a positive change from the surgery. I could lay flat on my back without needing an inner tube over my scapula to disperse the pressure, AND my scapula didn't protrude into the table!
Picture from a few months before surgery
showing all the propping over my back
that was needed just to lay back. The blue is
the inner tube. 

The mentality going into physical therapy was very different this time around.  When I got the okay from Dr. E to begin pt I asked him what I should expect. He honestly looked at me and said, "Well...I don't know since nobody has ever had this procedure done before so you need to go slow. Your therapists will be writing the protocol. Listen to your body and give your physical therapist feedback." Not having any sort of timeline to gauge where I should be in the rehab process was a good thing for me. There was no comparing my progress to anyone else. I didn't have over the top expectations when I started pt; my main goal was to be able to raise my left arm close to shoulder level, have enough motion to do functional daily tasks, and have less pain than I did in the Fall. That was it. Anything more than that was the cherry on top.

In order to rehab my left scapula/shoulder I was doing pt four times a week, two times a day, and on my days off I was going in the pool. Dr. E and my therapists said it was really important to do aqua-therapy to try to teach my arm how to move again. The pool would be beneficial because it would take some of the weight off my arm. It was incredibly difficult to retrain my arm to move like a "normal" person and resist the urge to move the way I've taught myself with altered body mechanics. To put it in perspective the last time my left arm had moved somewhat normal was in 2006. Some, but definitely not all of the things we worked on during the first month of therapy consisted of a lot of hands on work trying to retrain my arm, and retrain my brain that it's okay for my arm to move. I had to spend a lot of time walking just to practice getting my arm to sway so it didn't just hang at my side.  We worked on teaching me to reach for objects that were directly in front of me. For quite awhile my pt had to have their hands on my shoulder/scapula to help guide the movement because I didn't know how since in my world I don't reach for things. I bend my elbow and I lean forward with my torso to "reach". This was no longer allowed and was the hardest habit to break. We worked on a lot of neuromuscular control. We did a lot of exercises with my eyes closed to work on my proprioception (your ability to know where a body part is in relation to space. Ex: when your eyes are closed you know if your arm is at your side or above your head). We worked on getting all of my muscles to activate as one cohesive group vs. my muscles activating in a different sporadic order every single time. I can't tell you the number times I would say, "This feels so weird!" or, "There is such a disconnect; I can see you moving my arm in the reflection and my arm isn't supposed to move like that." or, "Are you sure this is ok?" or one of my favorites, "This is what a "normal" person moves like?!? Normal people move weird. My way feels better...(to which they reply, "Your way is anything but normal".) All I can say is, do not take those simple movements for granted. They're a pain in the butt to relearn once you've forgotten how.

June 15, 2015 in the water I could abduct my arm to almost shoulder level.
I couldn't move it like this out of the water yet but it was a huge
baby step that we were all very excited about.
You have no idea how weird it was seeing this picture for the first time
because there was a disconnect knowing that was my arm
that high.

One of the ways I worked on practicing reaching on my own without it feeling like exercise was doing jigsaw puzzles over the months to come. It's one of those activities where you start reaching without thinking about it which is exactly what I needed. Another activity I did was coloring in coloring books with a lot of detailed patterns. This helped with fine motor control, helping me practice having my arm up on a table, and of course more reaching when grabbing a different color. I'm right hand dominant so there was an added challenge of learning all of this with my non-dominant left arm.
All four of these puzzles were 1,000 pieces which meant ample opportunity for me to practice moving my arm. 

As honest and descriptive as I try to be there is no way to truly describe what all this therapy looks like day to day. Pictures with a beautiful landscape can be misconstrued as being on a vacation when the fact of the matter is nothing could be further from the truth. I'm fortunate to be in an absolutely gorgeous area while working my butt off. One of the things that I discovered with retraining my muscles and learning these motions is that there is a tremendous amount of brain fatigue that occurs because you're forming new neural pathways. I can't begin to tell you the number of times that I would come back from pt and tell my mom my brain is so tired and I literally couldn't think straight. Every day I had to lay down basically to reboot my system. Fortunately there were lounge chairs so I was able to lay outside. I would bring my pillows, prop, and get some fresh air. All that nature soothes your soul.

In between pt sessions and on my days off depending on how I was feeling, my mom and I would go for a drive to look at the mountains. Some days we would just walk ten minutes from where we were staying to picnic next to the creek and eat lunch. Other days we sat out in the courtyard and played a lot of Scrabble, cards, Yahtzee, and colored. We enjoyed being in the courtyard because we interacted with people; some of whom were doing pt. There was Tim with his parents, Peter and his mom, Firefighter Joe. It's nice talking to the other pt patients because you all have an understanding to an extent of what the other is going through. 

June 10, 2015 A funny coincidence occurred. A friend that I met in 2007 when I was in Minnesota happened to be in Vail for the weekend. The last time we saw each other was in 2007. It's kind of funny that we each live in different states, and end up meeting for lunch in a state that neither of us live in. It's funny sometimes how things work out. 



June 15, 2015 not only was it a big day because I was able to move my arm to almost shoulder height in the pool as the picture above shows, but also the Chicago Blackhawks won the Stanley Cup. When they won the Stanley Cup in 2013 I was in Colorado too so maybe it's a sign that I need to stay in Colorado...just a thought.   
Being excited that the Hawks won the Stanley Cup would be an understatement
This picture was taken at the Continental Divide. It's gorgeous up there.
June 25, 2015: my birthday!
I had physical therapy that day. The clinic was packed in the morning because the doctor's were doing their rounds for the post-op patients. I ended up getting a table in the back room and sat there by myself for quite a while. I never go in the back room because there isn't as much activity going on and there usually isn't anybody to talk too. Eventually another patient named Matt was brought back. He was there for his knee and was going to be leaving CO that afternoon to fly back home. It is pretty amazing how many people from all over the world come to this clinic for pt. If it weren't for needing the pt I would have never met any of these individuals and made some friendships along the way. I'm very thankful for technology. It makes staying in touch with everybody much easier. When my other therapist, T, came by me so we could start my session, he asked me what was new. I told him I'm officially another year older so he wished me a happy birthday.

When I went back to the clinic for my afternoon session, word had gotten around that it was my birthday. I found a table and T had me on my back and was working on my left arm. My other therapist D walk past the table I was at and went into his office. When he came out, he looked over at T and said, "Is it done?" T said, "Yea, it's in the back." Next thing ya know, D comes walking around on my right side and he and T say, "HAPPY BIRTHDAY!!!" D set a silver platter filled with a variety of cupcakes with "Happy Birthday Megan" on my stomach. I was shocked and said, "Ohhh my gosh! You guys got completely got me!" D and T proceeded to joke around and tell me that we should make reaching for a cupcake and bringing it to my mouth to eat as part of my exercises (reaching and bringing a cup or food to my mouth is actually part of my daily exercises so it was actually very fitting). D set the platter on a stool next to me and those cupcakes were my motivation; work hard and get a cupcake afterwards. I asked where all the cupcakes came from and who cut out all the letters and they told me everyone at the front desk was scrambling cutting out letters, and some stopped at the store to get the cupcakes. It was very much a team effort and I can not thank them enough for making my birthday special. It really meant a lot since all of my family/friends were back home in Illinois. Before I left I told my therapists to give the cupcakes to other patients and therapists because there was absolutely no way I could eat all of them.


The first month of pt was very difficult but also very encouraging. The months that followed brought a lot of "firsts"...
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