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.

http://vi.sualize.us/whenever_find_yourself_doubting_how_far_you_can_go_quote_picture_GQS1.html

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. 

Trust Your Gut

February 2013

The weeks to come after arriving home from Colorado were filled with much activity. As expected there was a lot of physical therapy trying to rehabilitate this right shoulder but there was also a lot of apprehension. The cortisone injection Dr. M gave me February 1st wasn't providing a lot of relief. I had to force myself to ditch the shoulder brace when it was almost March. I was still getting the sharp pain and couldn't move my arm more than a couple inches; however, I figured I would "get used to it" like I have with other pains in my body. Dr. M said if things weren't improving in physical therapy after 3 weeks the next step would be doing an arthroscopic surgery to take a look in my shoulder to see what was going on. Instead of doing 3 weeks of physical therapy I ended up doing 9 weeks. At 9 weeks my motion wasn't improving and I was still having a lot of issues. I contacted my medical team in Colorado and the plan was to have me come out in April for 2 weeks to meet with physical therapy and with Dr. M.

The pictures below are from March 6, 2013. Almost four months after surgery and that's the amount of motion I had with the "help" of the cortisone. 

I could/still can only move my arm this far

To this day, I can only raise my arm this high before I get the sharp/stabbing pain

I took the semester off from school because I had a ton of rehabilitation ahead of me
The lack of motion makes it really hard to do basic functional tasks...

As if dealing with the right side isn't enough, the left side has a whole list of problems too

Even though it was really, really difficult with all of the medical stuff going on, there were other things happening in my life to look forward too. It's these things that basically help give me the motivation to keep plugging along one day at a time. Once again, you have to incorporate happy things into your life. For me the happy/fun things are the reminders that there is more than just medical stuff in my life.

On March 9th my mom and I took my nieces to see their first professional soccer game. We had gotten them tickets as a Christmas gift and it was a much anticipated event. Both of my nieces played soccer, and before I became injured I was a soccer player; needless to say my mom had a lot of practice cheering us on (my dad too for that matter). We had a lot of fun at the game.

My mom and I. We made it to the stadium!

Waiting for the game to start with my nieces. 

A surprise visit from the mascot Sparky

March 22, 2013 was such an AWESOME day. My nephew Justin was born! Now I have two nieces and two nephews. I can't believe he is going to be two years old in just a few short months already. They sure don't stay little long and time sure does fly by!

My nephew Justin who is such a sweetie. If you have arm/shoulder issues
prop with pillows if you have too to make holding something easier 

In April my mom and I flew back to Colorado to follow-up with my medical team. Our initial plan was to meet with the physical therapy team for one week and then the following week meet with Dr. M. April 8, 2013 was day one of physical therapy. I told my physical therapist I will try to do whatever he wanted because I wanted him to see that there is something wrong. After my first appointment he was not pleased with my range of motion 5 months out from surgery. I tried doing various shoulder exercises and there was sharp pain and my arm wouldn't really move. The only good news was I did have a little strength which showed my arm had potential. During my second physical therapy appointment that day, my shoulder shifted forward twice and my physical therapist had to manipulate it back into place. Later that day I received a call from the clinic that my appointment with Dr. M had been moved up to the very next day.

April 9, 2013: I met with Dr. M and he reviewed the MRI images of my right shoulder that were done before the appointment. Again, nothing really showed but something was obviously wrong. Dr. M decided surgery was necessary. I asked when he thought I would be having the surgery and his response was, "Tomorrow." Talk about a quick change in plans!

April 10, 2013: Surprise surgery day. This was not on my list of "Things to do" for this week at all. During surgery a loose suture anchor was found. I had been saying since January when the pop in my shoulder happened that it felt like an anchor had popped because it was similar sensation to the two previous times. I was told it would have shown on MRI...it didn't. Good thing I was adamant that was something was wrong, and I trusted my gut. Surgery also revealed there was tearing of the allograft, type I SLAP tear (partial tear and degeneration of the labrum (cartilage)), and the arthritis had progressed further in areas. In November 2012 I had diffuse grade 2 and grade 3 arthritis on my humeral head and glenoid. Five months later I had diffuse grade 3 and grade 4 arthritis (there are 4 stages of arthritis with stage 4 being the most severe. There is loss of joint space and you're bone on bone...just what every 23 year old wants to hear..not). I also had evidence of adhesive capsulitis which is commonly referred to as frozen shoulder. During surgery they did manual manipulation, extensive glenohumeral debridement (cleaning out of the shoulder joint), subacromial decompression, subcoracoid decompression, subcoracoid bursectomy, as well as multiple deep tissue biopsies. It was the first shoulder surgery that I ever had that didn't involve a big open incision; it was done strictly arthroscopically (tiny incisions looking in the joint with a camera). Honestly, recovery was not hard at all. In comparison to my previous surgeries it was a piece of cake. It didn't even feel like I had surgery even though Dr. M said he did a lot of work in my shoulder. From a pain perspective my left side hurt a ton more than my right (surgical side)...for the time being.

Waiting to be wheeled back to the operating room

Pictures of the inside of my R shoulder joint

Physical therapy started the very next day after surgery. I went two times a day for the next week and a half while I was in Colorado. While we were there, 16 inches of snow occurred in one day! It was so pretty. We didn't have to drive anywhere in the snow so we enjoyed it even more.

Very pretty, isn't it? 

Fortunately with this surgery I didn't need to wear the brace long. It was worn
on an "as needed" basis. We went for a short walk to the creek so I just stuck
my hand in my jacket pocket to act as my "brace".

Sure enough this trip to Colorado had come to an end and we were back home in Illinois. We were home in Illinois just long enough to pack and turn around to head back to Colorado and stay for a little over two months to do a ton of physical therapy and see if we can get these arms functional. Who knew those next 2+ months was only the beginning of figuring out the "beast" that lives in my shoulders...

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