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.

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.

For updates you can follow Meg's Shoulder & Scapular Journey on Facebook

Took this picture at Piney Lake in Colorado last year. 

Wednesday, February 25, 2015

2015 A Humbling Surgery

WARNING TO THE SQUEAMISH TYPES: FRESH INCISION PICS BELOW. I'LL POST A WARNING WHEN YOU GET CLOSER TO THEM

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.
http://www.slideshare.net/TheSlaps/dr-b-ch-11lecturepresentation

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
http://www.cedars-sinai.edu/Patients/Programs-and-Services/Spine-Center/The-Patient-Guide/Anatomy-of-the-Spine/Vertebrae-of-the-Spine.aspx

The pinkish color is the spinous process and is where the Achilles tendon
 allograft was anchored
WARNING: BELOW THIS 1ST PICTURE IS INCISION PICTURE
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
https://www.pinterest.com/pin/415105290628623439/

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 Shoulder & Scapular 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.
http://www.pinterest.com/pin/362047257519360343/
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.
http://www.strapya-world.com/products/68910.html
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 Shoulder & Scapular Journey My family will be posting updates there.  
My neighbor posted this quote yesterday and I found it very fitting

Tuesday, December 23, 2014

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...