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.
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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Saturday, May 16, 2015

2015 A Special Kind of Strength

You know when you have certain medical tests done, or sometimes before being wheeled back to the operating room for surgery, patients sometimes choose to have a shot of medication to help them relax and block out their memory? It's very strange, isn't it? To think you were awake, followed orders, and had conversations with people, yet you have no recollection of it ever happening; it's a hard concept to grasp that something like that can actually happen. It's like you've lost time that you can never get back. Now imagine your life is like that for almost two months. After I had the scapular stabilization with allograft and scapular muscle reattachment surgery in January, my doctors really medicated me because the surgical pain was horrendous on my left side, neck was killing, and my right side kept subluxating, locking, and doing a bunch of other weird, painful stuff. Due to all of the medication my memories are few and far between. I don't remember staying in the hotel in Minnesota (MN) or getting home from MN. There are pictures I don't remember taking, text messages I don't remember sending, conversations I don't recall having, and I only have vague memories of writing my last blog post. My family repeatedly told me it's a gift that I don't remember those first several weeks because it wasn't pretty. When I hear this it scares me and makes me sad. It tells me how bad of shape I really was in. Out of 24 surgeries, this was the one and only time I ever had this happen to me.
Feb. 7, 2015
Let's not kid ourselves- not a flattering picture
Heat on my right so my shoulder unlocks, ice on
the surgical left side, and neck brace to try to get some traction
I look at it and I don't recognize this person. It
may be because I zoomed in and my eyes have
no spark.
April 11, 2015
With my niece Lizzy, and dog Daisy. You'd be amazed
how much good getting fresh air does for you. Take
advantage of it even if it's for 10-15 minutes. 
Fortunately the end of March/beginning of April was when I started feeling more like myself in my head and the pain was finally coming to a point of almost being somewhat "tolerable". I thought the day would never come. I'm so happy it did because I felt like I had no fight and couldn't keep living like this. The mountains seemed to be getting taller instead of smaller. I didn't know how to cope with all of the issues at hand, and all the other issues that still needed to be fixed. To those that are feeling like they are in a similar position, it WILL get better. I'm always telling myself: baby steps. I try not to look too far out because I will get more stressed out, and more overwhelmed than I already am. I try to focus on the task at hand. What might be a small accomplishment to someone else could be a huge accomplishment for you so try to be happy with those victories made. Not everybody is going to understand how hard things can be, or understand the big celebration in the "small" victories. It's okay if they don't. All that matters is that you took a step in the right direction. Examples of some of my "small" victories recently: getting showered and not feeling like I'm going to die afterwards, maneuvering around easier, getting dressed with little help, eating in a restaurant, and staying awake in the day. I was so happy the day I could finally walk from my bed to the bathroom standing up straight instead of looking like the Hunchback of Notre Dame. Like I said, it doesn't seem like an accomplishment worth getting all gung ho over, but those are all big victories in my world. I'm sure there are many people out there who get what I'm saying. It takes a special kind of strength to get through challenging times, that will never be developed in a weight room.


One of my fellow shoulder buddy friends mailed me this bracelet a few weeks ago.
I wear it 24/7 because it's my daily reminder. It says 'believe' on the outside
 and on the inside it says, "be strong, be fierce, be amazing, be you"
Needless to say, writing hasn't been at the top of my list. Sometimes I wish people could understand through words just how much time, help, effort, and creative thinking goes into getting the most simple tasks done each and every day. Having traveled the medical journey that I have, it has really opened my eyes to how hard and tedious it is when you have some impairment. It is something I never really thought of before my life changed. People need to realize not all disabilities are visible! You'd be amazed how unaccessible the world is for people that have physical limitations. Accomplishing tasks within your own home is already a challenge but when you step outside your front door, there are a whole new set of hurdles to try to overcome. The list is long but my top two hurdles are 1.) not all doors are handicap accessible. When you can't push or pull that's a huge problem. To be completely honest, I have doctors offices that do not have a button to open the door. How is that even possible? 2.) Pretty much all stores like to hang or put things up "high." When all of your arm motion only comes from your elbows that doesn't leave you with much to work with. Since I can not reach, push, or pull at all I always need to have somebody with me to assist and act as my arms. All I can say is it is a learning process trying to figure out how to get things done and feel like you still have some independence.

As far as that tall mountain goes, it's still pretty darn high. At my recent appointment April 27th in Minnesota Dr. E told me we have a very long ways to go before things will get better. To catch you up to speed, I saw Dr. E at the end of March for my 8 week post-op visit. At that time he extended my time in the brace for my left scapula at least another month. Besides not feeling ready to ditch the brace, Dr. E said with the EDS (Ehlers-Danlos Syndrome) he wants at least 3 months full-time immobilization to make sure my tissue has time to heal. After arriving home the symptoms in my neck and upper thoracic spine (upper back) were getting much worse. I waited two weeks to see if those symptoms would calm down but they didn't. I emailed Dr. E to see if he could order a cervicothoracic brace so I could see if that would help. Unfortunately the brace only helped for 90 minutes day one and I haven't been able to wear it since. It seems something is getting compressed when I am in that position therefore, aggravating my symptoms.
April 14, 2015
April 27th we were back in Minnesota meeting with Dr. E to evaluate my left scapula again. Dr. E said he was going to leave it up to me if I want to wear the brace or not. He took my brace off to see if I could move it at all and at this point it does not. This is no surprise and not abnormal. He told me I am allowed to start physical therapy and he would recommend I go back to my physical therapists in Colorado. The big questions is how long will I need physical therapy? How many times a week? There's no way to answer that question because there's no protocol in place because nobody has ever had this surgery before. We will be developing a protocol as we plug along. Dr. E said we need to progress very, very slow so we can see how my body will respond. It will be a mix of regular physical therapy and aquatherapy.
Dr. E and me
At my appt we also discussed my neck and right shoulder issues. This was when the blindside happened. Dr. E asked if I could go to Michigan to see a specialist for my neck that is innovative and likes complex cases. My response, "Yea, I guess. I haven't been to Michigan to see a doctor yet." Little did we know I would be in Michigan exactly one week later. So May 5th I saw three spine doctors. All three said I'm an enigma. Structurally the bones are fine and there's no pressure on my spinal cord which is good but there are several other problems oing on. 1. Possible compression of the nerves leaving the spine 2. Huge soft tissue problem (muscles, tendons, ligaments, nerves) 3. Possible brachial pleuxs problem (bundle of nerves serving the shoulder) 4. Huge scapulothoracic joint problem 5. the biomechanics between my neck, thoracic spine, right shoulder, and right scapula are somewhere far out in left field. They would recommend seeing strictly a neurosurgeon and not anymore spine orthopedics because a neurosurgeon deals more with the nerves leaving the spine. They also said to continue seeing Dr. E because he's the top mind in the world with all of the biomechanical issues I have. Before continuing to pursue the neck/R they think I need to rehabilitate my left scapula first. I completely agree because 1. I'm still in the brace the majority of the day 2. I need time to land and not be traveling every couple weeks 3. physical therapy will be able to take video of my weird neck/right symptoms and email them to Dr. E.
A much needed "not allowed to think medical day" in Michigan at Bald
Mountain State Park. It is so important to try to get a break from the medical
nonsense and just have a nice, relaxing day. 
What's next: more travel of course! In the past 4 weeks we will have traveled to Minnesota then back home to Illinois. Then to Michigan and back home to Illinos. Now we head to Colorado where we will be for a couple months. My mom and I will be leaving for Colorado on May 20th so I can do physical therapy. We'll arrive to our destination May 23rd. Day one of physical therapy is May 25th. Hopefully once therapy gets going I'll be able to ditch the shoulder brace for good. I have been in it since January 28th. I am very much looking forward to start physical therapy.

To anyone that has arm problems, look into getting a dragon software. It is so much easier to talk out loud and have it type for you.

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Took this picture at Piney Lake in Colorado last year. 

Wednesday, February 25, 2015

2015 A Humbling Surgery


Before writing about where I left off with going back to Colorado for physical therapy in 2013, I want to write one more current post so you all know I'm alive and made it out of surgery on January 28th okay. The photo below is the last outing with my nieces and one nephew to see Disney's Frozen on Ice five days before surgery.
Below is how I ended up decorating my brace. I really love the encouraging words on the straps. I painted on HOPE, STRENGTH, BELIEVE, DREAM, LAUGHThey're daily reminders. I think of it like putting on my straps of armor. Then of course I have some Chicago Blackhawks hockey pride!

Front of brace

Back of brace

January 27th
It was the day before surgery with Dr. E. I had an appointment with Dr. E. It was a chance for me to ask any questions I had and to go over any concerns before surgery the following day. Thank God for that appointment because the procedure completely changed by the time I left. When Dr. E walked in and asked if I was ready for surgery he could tell that I was hesitant by the way I said yes. I told him I didn't think putting the allograft (cadaver) tendon in by itself would work as efficiently without repairing the muscles that are detached too. He smiled and said I'm thinking too much. My response was I'm ALWAYS thinking and my brain NEVER shuts off. I then proceeded to explain when previous doctors fixed one thing at a time it didn't work and I was back in surgery 2-3 months later. I didn't want to be in that cycle again. After listening to my explanation, Dr E agreed to open my incision top to bottom and fix the muscle detachments. Dr. E then said, "There, now no more concerns!" and I said, "Actually there's one more thing; you still haven't gotten my arm up over my head like the doctor and therapists in Colorado did." At that, Dr. E said, "Let's work on this. Stand up and tell me what you want me to do." After some directing and explaining Dr. E finally held my scapula in the correct position and my arm went over my head!! YAY! Good thing I spoke up, because this completely changed how surgery proceeded.
This was my view from my hotel bed...the hospital. It beats looking at a dumpster 
January 28, 2015 (Weird fun fact- this was my first surgery EVER in the month of January. Now all months have been covered except August. Know that's NOT a goal I'm trying to reach) )

I was up early in the morning day of surgery because I didn't sleep very well. I showered and did my tradition of painting my toenails. I had to be at the hospital at noon so beforehand I watched the movies; Mean Girls and Patch Adams...nothing like complete polar opposites. Mom, Dad, and I did lots of waiting at the hospital because we were there at noon and I didn't get wheeled back to the operating room until after 6!! So what do you do when you're bored? Play cards and take pictures. Man was I hungry!!!
Dad and I
Mom and I 
It was unbelievably hard to get comfortable while waiting to get wheeled back.
When I saw this picture I really noticed how odd my neck looks
The medical team finally arrived with my chariot aka the gurney. We put my shoulder brace and neck brace on it so it wouldn't be forgotten. I hugged and said to my parents the same thing I always do before being wheeled to surgery, "I love you and I'll see you afterwards". This was the 24th time I've said this to them. I can only imagine what it must be like from their perspective watching me be wheeled off for the 24th time. I know NONE of us ever saw this many surgeries coming the first time I had ankle surgery. We've never said it's easy but I am blessed with one strong, stubborn, family who fights till the end.

Just when I was about to be put to sleep, Dr. E walked into the operating room. He said, "Did you see my disco ball hanging?" I shook my head no and he said, "TAKE THE MASK OFF! DON'T PUT HER TO SLEEP YET!" A few second later he had this disco ball in his hands that he was twirling. I started laughing! He then said, "THERE, NOW YOU CAN BE PUT TO SLEEP LAUGHING AND KNOWING I'M NOT A LIAR" He also reassured me I will be positioned exactly how I wanted to protect my neck, R shoulder and other joints in general due to Ehlers-Danlos Syndrome (EDS). Nurse Stacey rubbed my left forearm while saying everything will be okay. Next thing I know I was waking up in recovery.

I remember someone holding my hand. It wasn't my parents, or a nurse. I honestly thought it was Dr. E. He was asking me what I did back in the O.R because everybody liked me a lot and had nothing but good things to say. My mouth was so dry so I just did the "I don't know" motion with my hand. He laughed and said they all loved me and kept talking about me. He then let go of my hand and the pain just started increasing. I remember saying my scapula, my spine, and my neck are killing me. That person that I thought was Dr. E was in fact him. He grabbed my hand, squeezed it again and told me I know you hurt, I'm sorry. There was lots wrong." Dr. E is the most compassionate doctor I have ever met. He is truly amazing.

There sure was a lot wrong with my left scapula (shoulder blade). I stayed in the hospital 4 or 5 days. The scapaulathoracic articulation was unstable (scapula joint). We knew I had muscles detached but we didn't know which ones or how many. One muscle had detached for the first time ever; my levator scapulae. Two other muscles had re-detached from my scapula; rhomboid major and rhomboid minor. There was also a mass that had just detached and stretched from my scapula; not sure which muscle that is. So there were at least 3-4 muscles detached. Now it was time to do the original procedure; stabilize my scapula. To do this an Achilles Tendon allograft was attached to my scapula and anchored to my spinous processes. Dr. E said it's basically a fusion only without plates and screws. A I read through the surgical report so many pieces fell together as to why I've been killing with pain for 3 years just on this left scapula alone.

The rectangles give an idea of where the muscle detachments were.
The line on a diagonal represents the allograft. I don't know if this is
100% correct positioning but it gives you a general idea. This diagram
is on the right side but the work on me was on the left side

The pinkish color is the spinous process and is where the Achilles tendon
 allograft was anchored
Below is what I looked like when I got wheeled to my hospital room. I don't care how medicated you are but those bumps coming out of elevators ALWAYS kill. You can think of them like hospital speed bumps.
Immediately after surgery.
Definitely not the most comfortable sleeping position.
This visually explains why it kills to put pressure on my back and stand vertical.
It was nice not having staples this time around. That cord is a tube
that is attached to a drain to collect excess fluid.
Do the best you can. That's all you can do. 
This surgery has been extremely humbling for me. It has been by far the hardest recovery. I'm one month out from surgery today and the amount of pain and help that still exists is mind boggling for me. This was my 19th shoulder surgery and I thought the pain couldn't get that much worse; considering I've had other really big surgeries. My gosh was I wrong!! This one takes the cake. Maybe it would be easier if I had one semi-decent arm but having both arms out of commission requires help with so many things.

The last time I needed this much help was when I was a small child. In the hospital I was humiliated when I had to brush my teeth while sitting in a chair and had to spit into the cup the nurse was holding because I couldn't bend forward. I was humiliated being checked for bed sores because I was pretty much stuck on my back. The nurses had to sponge bathe me. They had to put my medicine in my mouth and give me my drinks along with a million other things to help me.

Nurse helping me clean my hair
One of my nurses
One of my other nurses 
Its been humbling with my family too. My family has to get me dressed. Since the motion in my right arm is so limited my family feeds me like a baby and puts my pills in my mouth because I can't reach my mouth. Straws are in all my drinks so my family can help me. We now have a wheelchair because I can't walk far due to all the repair work in my upper back I can't stand too straight; EDS is flaring up my knees and hips due to the lack of exercise I have to wear braces for my knees. Then there's the neck brace I have to wear which means lots of stares with all the bracing.

My sister doing my hair
My 9 year old niece feeding me
This has been a humbling experience but if it weren't for the nurses and my family I would be completely helpless. All you nurses and family deserve a million thank yous!! I don't care how much pain I'm in, but I ALWAYS make sure to say thank you. You're the ones helping me get through this after all! Let's not forget all the text messages, emails, phone calls, and sent gifts from friends/family; including people I don't know and have never met. Your support does more than you realize

Feel Better card from my niece and cuddles from my dog 
My first outing was 4 days ago. It was so hard but
so well worth it. Baby steps

Thank you so much to those that have been 'liking' directly on my blog post and re-sharing it. It has been so much fun watching my numbers rise, make new friends, and hear other peoples stories. Please feel free to leave comments directly on this blog post page.  

If you want to follow current updates, go onto Facebook and directly "Like" Meg's EDS Medical Journey By directly liking this page you will be helping raise awareness about a connective tissue disorder that I have called Ehlers-Danlos Syndrome as well as raise awareness about rare shoulder and scapular injuries.

For more info on Ehlers-Danlos Syndrome Google The Ehlers-Danlos National Foundation 

Wednesday, January 21, 2015

2015: Let the "Fun" Begin

I've been contemplating on what I should write and I've decided to write a current update because I'm having surgery next week and writing is a coping tool for me; I know I'll "feel better" once I get it off my chest.

Warning to the squeamish types: there are 2 pictures near the end that might not be your cup of tea. It's NOT blood & guts; just a scapula shifted out of position. I'll post another warning when you  get closer to it. 

As I reflect back on 2014 the first thing that comes to mind is: what a long, hard, crazy, exhausting roller-coaster year!! It was a year full of so much travel seeing physicians that I had been referred to throughout the United States. We traveled approximately 7,542 "medical" miles! These miles were divided between trips to Pennsylvania, Massachusetts, Colorado, Minnesota, and of course, Illinois. Talk about a lot of flying and driving just to see a doctor!!

When 2014 started I thought it was going to be a year of moving forward and having the surgeries that were proposed in 2013 done. Instead of moving forward though, it seemed like there was some higher power constantly putting obstacles in my path so those surgeries would not happen. At the time I was so frustrated and angry at my situation. All I wanted was to have the surgeries done so I could begin the rehabilitation process to regain some of my arm function and get my life back. When you're living with a chronic medical condition 24/7 and all the various challenges and pain that goes along with it, it's really, really hard to see how things could possibly work out because you're too close to the situation. When doctor appointments don't work out, my family and I constantly tell ourselves, "That doctor wasn't the one meant to help me." When I look back now on how all the events unfolded in 2014 I know I had somebody looking out for me the whole time. It's kind of an eerie feeling because the two big surgeries that I just wanted to get done and over with would have never worked.
Fast forward to November 2014. I had finished doing two and half months of extensive physical therapy in Colorado trying to narrow down what is wrong with my neck, upper back, both shoulder joints, and both shoulder blades. It was now time to head to the fourth state to meet with yet another doctor; this time we were off to Minnesota. I can't begin to express how scared, anxious, and nervous I was. I felt so sick the day of appointment due to the nerves.

November 17, 2014
Total game changer- Thank God for Dr. E! He has seen 6 other patients similar to me. All 6 are female, have Ehlers-Danlos Syndrome (EDS) or a cousin of EDS, are tall/thin, were once very athletic, and problems started at around age 16. It's a very difficult problem to treat and it's really hard for me to put into words what the issue is. In layman's terms, it's a very, very, rare, messed up/altered muscle activation pattern that Dr. E has only seen in this category of patients. The altered muscle activation pattern causes the scapula (shoulder blade) to "dance" because there is no stability. This causes both scapular and posterior (back) shoulder joint instability, decreased strength, and very limited motion. The first step of trying to treat this was to have botox injections into my trapezius and serratus anterior muscles. It was supposed to take about a week to kick in, would peak at around 3-4 weeks, and would take 3 months to be out of my system. As luck would have it, I reacted completely opposite of what the botox was supposed to accomplish. Things started feeling worse on day 3. Instead of relaxing my muscles it made my muscles ridiculously tight, decreased my motion even more, and skyrocketed my pain. I kept trying to tell myself it's only been X amount of days/weeks there's still a chance it will get better...time would tell. In regards to my neck, there's a major problem and I have "extreme hyperlaxity" in it. A neck brace was ordered and we're trying to see if it will stiffen up my neck. I don't think it's stiffening too much but it does help with some of my symptoms which I'll take. In regards to my right side it too has this weird muscle activation pattern, but it also has some weird nerve problem that is still being investigated.

When we arrived home from Minnesota, Thanksgiving was literally just a few short days later. It was the first time my mom and I had been home since August. It's kind of funny that the only picture that was taken of me on Thanksgiving was when I was messing around with our dog Daisy and not with anyone in my family.
I tried to get it so it looked like she had on a babushka :)
Apparently my nephew thinks my neck brace makes a good mask too :)
In December I was really not feeling well at all. Between the botox and the climate change my body was reacting negatively. My joints in my upper torso were more unstable than they were when I was in Colorado. When I was in Colorado I felt better and had even gained almost five pounds which was a very good thing. I've been trying to put more weight on. Within a few weeks of being home I lost the weight I gained, plus some. I emailed Dr. E to see when I was supposed to come back for a follow-up appointment. He said in January or February depending on how I was doing. I scheduled an appointment for January 7th. I had called mid December to see if I could get in sooner and the good news was there was a same day cancellation! But wait....the bad news....the appointment was at 4 o'clock and it was already 11:30. I didn't have enough time to get from Illinois to Minnesota. Did you really think I would get in sooner?..haha that would be too easy :) Too bad we don't have those tunnels like in Super Mario that transport you quickly from one location to another :) That could have been pretty convenient.
Me, my niece, and my dad at the holiday zoo lights.
There's no way I could walk the entire zoo with all the
upper body stuff going on so we rented a wheelchair. It's
way more enjoyable to be pushed around than to be really
stubborn and hurting a ton trying to walk.
Also, scarves work really, really well to cover up the neck brace
if you're self conscious about it!
On Christmas Eve I got the most amazing tea mug from my brother and sister-in-law. I use it just about every day and every time I do, it always makes me smile.

So true haha
My favorite picture of my nephew Justin. His facial cracks me up.
January 7, 2015
We were back at Mayo in Minnesota meeting with Dr. E. I was reevaluated and the botox did in fact make me worse and he had never seen any reaction like it before. Gooooo figure! My parents and I were told I have a lot of problems and despite all the previous surgery I've had, surgery is needed. Instead of going into the surgery with the mentality of, "I'm going to fix everything" Dr. E made it very clear that he only wants to fix one problem at a time to see how I respond. During this surgery Dr. E is going to be attaching an allograft (cadaver) tendon between my scapula and my spine. We're hoping this surgery will help me just to get my arm to shoulder level. The allograft will medialize my scapula and keep it in internal rotation (basically if you were to shove my scapula in towards my spine). My biomechanics are completely screwed up and this is completely opposite of normal. Dr. E doesn't know why this is the only way I can move my arm but the point is it does move this way so we have to help my body so it can. My mom asked Dr. E, "What do we call what Meg has?" and Dr. E smiled and said, "The Megan Syndrome". I officially have my own category and I am not the same as the other 6 individuals. I'll be braced 6-8 weeks after surgery full time. The good thing is if I don't respond well to the surgery, it's easy enough to cut the allograft out with local anesthetic in the office and Dr. E has backup plans. 
My new custom brace that took almost 2 hours to make.
It's nice because there's no weight on my shoulders or neck.
My sister bought me foam so I can put it between my ribs and the brace.
My ribs don't like the pressure of the brace at all but the foam at least
gives a little bit more padding. It's pretty gross feeling my cartilage
slip over my ribs when I move.
To the squeamish types, the 2 pictures are below this paragraph...

So here we are today. In exactly one week I will finally be having my surgery on January 28th. I've tried everything under the sun for the past 2 years trying to get better conservatively and it's not working. My symptoms are getting worse, I've lost my arm motion & strength, my neck is worse, my pain is off the chart, I rely on so much help, and I've dropped 15 pounds due to the pain. I'm happy to finally have a treatment plan in the right direction. I'm not really nervous about the surgery itself. I'm more nervous about how my right side is going to react and how I'm going to get through the next few months because neither arm will be working. One will be immobilized and the other can't move at the shoulder; it's all elbow motion. I'm going to have to learn to accept a ton of help. My family is up for the challenge; wish them luck.  

This happened last week when my mom and I went
to run a couple errands. When we got home I had to
go lay down. An hour went by and I took my shirt
off to have my mom apply cream and this is what we found.
My scapula shifted waaaay out of position. No wonder I didn't feel right.
This is what happens when I try to "push" the wall.
It has been a very long week since this happened.
I've had to immobilize my arm every day. 
You might be asking how did this happen? How did I injure myself? The primary diagnosis in my chart is Ehlers-Danlos Syndrome which is causing all the laxity, which is causing all of my problems. I didn't sustain any specific injury and I don't have some amazing heroic tale to tell. It comes down to faulty tissue. The good news is I have a doctor who is totally invested in my case and has amazing communication skills. I have a doctor who believes my crazy symptoms and doesn't think this is all in my head. I have a doctor who is optimistic that he will help me get more use of my arms again; it's just going to be a long road to get to that point. I feel really good about working with Dr. E. 
The other day my nieces, nephew, sister, mom and I all made a pie. There was
a lot of love put into it and it tasted really good. We made a s'mores pie. 
I don't know how soon I'll be writing after I have my surgery. The best way to get current updates is to go onto Facebook and "Like" Meg's EDS Medical Journey My family will be posting updates there.  
My neighbor posted this quote yesterday and I found it very fitting