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.