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.

You can "LIKE" and FOLLOW on Facebook for CURRENT UPDATES at Meg's EDS Medical Journey

Took this picture at Piney Lake in Colorado last year. 

Dance in the Rain

November 2012

Pain! Lots and lots of pain! That was my word of the day for several weeks/months. The anterior capsulolabral reconstruction w/ allograft shoulder stabilization surgery did not go anything like my previous shoulder surgery recoveries. At my post-op appointment I learned I had diffuse grade 2 and grade 3 osteoarthritis on my glenoid (socket) and humeral head (ball). The arthritis occurred in 8 months. During my surgery in March of 2012 I had one spot of moderate chondromalacia which is softening of the cartilage. Now I had diffuse arthritis throughout the shoulder. Even knowing there was arthritis in my shoulder something just didn't seem right. I couldn't pinpoint what it was exactly; I just know I've never hurt that bad in my life.  I kept telling my family over and over again to get the graft out of my shoulder because I thought it was maybe that causing the pain (I know now it was NEVER the graft). I had pain that was radiating over the right side of my neck along with this constant sharp/stabbing pain over the front of the shoulder area that just wouldn't go away. I took the pain medication and muscle relaxants as prescribed and it didn't touch this sharp pain. I slept a ton in the day and very little at night. I iced a ton and I cried a ton. The pain just wouldn't subside. 

Incision 3 days post-op

During this time I also had my calculus class to attend too. After every surgery I only give myself 2 weeks off. This time though I only let myself miss a little over a week. Thanksgiving break was about to happen and I knew I just needed get through a couple days and then I could rest. My class was in the morning. The car ride was brutal. I was so pale and looked awful. I made it to class and sat in my seat which was in the front row in the corner. My teacher walked in and spotted me and kept his eye on me the whole time. By the time break came I couldn't even hold myself up. I rested my head on my left hand and existed. When class started back up I slouched in my seat and just stared at the white board trying to understand whatever was being taught. My neighbor offered to take the notes for me. I took him up on that offer. I didn't feel like writing left handed anymore (I'm right handed). The following week after Thanksgiving we had an exam. During Thanksgiving break I tried to study but I wasn't retaining any information because I couldn't concentrate. When I took the test I did absolutely awful on it. Before the test I was earning an A and after that exam I dropped to a low B. I was freaking out because there were two more exams and then the final exam to still get through. I decided to just withdraw from the class because I didn't want to bring down my GPA and the demands were just more than my body could tolerate at that time.

Thanksgiving dinner with my grandpa, sister, nieces, dad and mom (she's taking the picture)
I'm the one in the pink doing the famous fake smile :)

November 26, 2012 with my niece Emily.

December was less stressful than November because I didn't have to worry about class but it was still a really rough month. I was not used to feeling the way I did a month out from surgery. My energy level was really, really low but since it was Christmas time I wanted to try to enjoy the Christmas festivities too. If I knew I was going out and about at some point in the day for a couple hours I made sure to rest and not do a lot beforehand to conserve my energy. To this day I do this because sometimes things aren't ideal and you just have do the best you can with the body you have to deal with. In mid December we went to my cousin's house for the King family Christmas party. It does the mind and body a lot of good to just get a change of scenery sometimes. It's also a good distraction. We knew before we even left our house to go to the party that there was no way that I was going to last the entire evening; however, I knew there would be a comfortable couch to sit on so really there was no reason why I couldn't go. Personally, I would rather go for a couple hours and try to have a little fun instead of not going at all. 

Incision almost 1 month post-op

I hung out with this little cutie who is my cousin at the Christmas party.
If you ever need a smile just go hang out with a baby. 

The following week my sister was going to take my nieces to the Brookfield Zoo so I decided to go with. There are wheelchair rentals and lots of benches in between to sit down. We went shortly before it started to get dark because the zoo decorates with Christmas lights. It was a very enjoyable time and it wasn't freezing. I'm positive we will be going there again this year. It has kind of turned into a Christmas time tradition for us.

My nieces and I sitting on the Christmas sleigh

I felt like a big puffy marshmallow between my hoody, winter coat, and brace.
I stayed warm though!

The following week was Christmas and in the blink of an eye 2012 was over. It was a roller coaster of a year. There were a lot of highs with that feeling of hope that I had my last surgery for hopefully a long time back in March and I could start planning for future. Then there was the major low of waking up with my shoulder unstable again and being back in surgery out of state in Colorado 8 months later. Soon enough physical therapy would begin and the crazy "impossible" medical journey would continue into 2013. There would be a surgery, four medical trips to Colorado, one medical trip to Kentucky, and one medical trip to Ohio. I guess the one plus of having really, really, rare complex shoulder injuries is you get to travel. Over the years I have certainly made my way across the United States seeing some of the top shoulder specialists in the country that I've been referred to.

http://www.pinterest.com/pin/496944140105510320/ 

Scapular Pain Validation

August 2007

Words can't explain how happy I was to be home and out of the pain program; even though I met other patients that were great, I couldn't wait to get out of there. I was around the people that loved me the most...my family. They all believed me and knew that there was a problem. At home though, the mind games started to get a hold of me. I would think, "Maybe the pain clinic was right and there is nothing wrong with my shoulder blades. Maybe I am stuck like this and have to learn to accept the condition of my shoulders. Maybe this is all in my head and I am overreacting." When these thoughts would enter my mind, I would have to prove to myself that there was still a problem and that I wasn't crazy. I would try doing the various exercises that the pain clinic had me do or I would  try getting dressed the way normal people do. The way I got dressed was bending over at the waist and keeping my arms close to my side in order to get a shirt on. It's like I needed to feel the sharp pains in my scapulas to prove to myself there was still a problem. From hearing the staff at the pain clinic in Minnesota telling me over and over again, that there is nothing wrong with my shoulder blades instilled so much self-doubt. I went into the clinic with confidence and walked out without the confidence I once had in myself and knowing what I was feeling.

The orthopedic Dr. S from Minnesota gave me two suggestions for treatment. The first, wait 3 years for technology to advance or two, go to Kentucky to see Dr. B the "Scapular Guru". Waiting 3 years was NOT an option. On the other hand though, I did not want to go to Kentucky either. The pain clinic caused me to be fearful of new doctors because I was afraid they too would tell me there is nothing wrong with me, or they would yank my arms above my head, or they would disregard everything I was saying. We already had an appointment set to see Dr. B at the end of August 2007 but my parents brought me to see Dr. K first who fixed my knee and hips to see what his opinion was.

When I saw Dr. K, I asked him if he would do surgery. I was in so much pain and so limited in my motion that I wanted somebody qualified that I trusted to do surgery and look. At the appointment with Dr. K I made it very clear that I didn't want to go see Dr. B. I asked him if he could just do surgery and cut over my shoulder blades where I was having the pain. I already knew the answer was going to be no, but I knew something was wrong and at this point Dr. K was the only doctor that I trusted. Dr. K looked at my parents and said, "She doesn't want to go to KY." My mom said, "I don't care. We were given two options. Either wait 3 years or go to Kentucky." Dr. K then looked at me, and said, "Would you please go to Kentucky to see this one doctor." I huffed and said, "Fine."

When you live with pain and limitations of your body, sometimes it is just so hard to be reasonable and cooperative. You can't always wrap your head around what is best for you. I had just finished seeing more doctors in a month than I had seen my whole life. I came out of Minnesota more fragile than I went in, and the idea of seeing another doctor was just horrifying to me.

So here we go. Time for a 9 hour drive to Lexington, Kentucky with my parents...

August 24, 2007: If I had to put a number on my nerves the day I saw Dr. B on a scale from 1-10, 1 being no nerves, 10 being a lot, I was an easy 20. I was terrified. My heart was racing and I felt like I was going to cry any minute. The nurse called my name and my parents and I walked back and waited in the exam room. I sat in the chair next to my mom and couldn't stop fidgeting. There was a knock on the door. In my head I'm thinking, "Oh no, it's time. Here comes the "Scapular Guru"." I nudged my mom with my knee and whispered, "Here we go, here comes Dr. Arrogant." Then I was thrown for a loop. Dr. B walked in and said, "Howdy, howdy ho. I'm Dr. B. How are ya'll doing?" I looked at my mom with wide eyes because here was this super-specialist recommended by Dr. S in Minnesota and he was so friendly and nice. I was expecting, a very arrogant person. What a nice surprise!

Dr. B sat down and we chatted about my history. He made me feel very comfortable with him. I actually had trust in this doctor. It was now time for the part I was dreading most...the shoulder blade exam. Dr. B had me stand up with my back facing him. He asked me to show him how much motion I had. While I moved my arms his attention was strictly on my shoulder blades. He pushed in certain spots to determine where I was having the most pain but he never once yanked my arms over my head. After a 5 minute examination, Dr. B said I could sit back down. He looked at my parents and I, and said, "I know what's wrong; the muscles are detached from both of your shoulder blades." My parents and I sat there shocked. I was stunned and I know my eyes opened up wide. This moment was very emotional for both my parents and myself. You might think that we would be sad to hear that I needed not one, but two surgeries, but really we felt so much relief in knowing that there was damage because it validated everything I was telling the medical professionals in Minnesota over the past month. Dr. B informed us that scapular muscle detachment injuries do not show up on imaging. This explained why all of my MRI, CT, EMG and a bunch of other tests all came back normal. The main thought going through my head was, "Thank God I listened to my body and refused to play volleyball at the pain clinic. All those doctors, nurses, and physical therapists at the pain clinic that told me there is nothing wrong with my shoulder blades were just proven wrong."

Before I could even have surgery to reattach the muscles to my scapula, Dr. B said I needed to go for massage therapy. This was because the muscles throughout my upper back and neck were so extremely tight that if he were to do the surgery immediately, it wouldn't work because the tissue wasn't pliable. His biggest concern was that if the muscles weren't relaxed and he did surgery, the tight muscles would contract causing the work he did to retear. That issue would be addressed when we got back to IL. We stayed a few extra days in Kentucky to have some fun. Over the years, one of our philosophies has been to incorporate fun on the days that there are doctor appointments, or tests, or you get bad news. If we didn't incorporate fun, I don't know how we would have gotten through all these years.

The best, most supportive parents I could have ever asked for.

Having fun at the Kentucky Horse Park after seeing Dr. B

At Keeneland Horse Track. It was such a HOT

day; there was zero shade and it was 90 degrees out.
Too bad we didn't win any money at the track.

I was so humiliated taking this picture. There is a

busy street like 10 feet away from where I was

standing and my mom insisted on me taking a picture

with "Big Boy" because it would make a good memory.

She was right.

After returning home from Kentucky, I made an appointment with an advisor at a community college to see if it was too late to sign up for classes. The classes that I needed were already filled so I took fall semester 2007 off from school. That same week, massage therapy started. I went 3 times a week for 2 months; it was anything but relaxing. The therapist had to massage the muscles that were detached as well as the surrounding muscles. It was terrible, awful, pain. Sessions were only about 15-20 minutes but they seemed so much longer than that. Trying to lay still so the therapist could do his job was so hard to do. I laid there face down quietly, with tears coming out of my eyes. It was such a long 2 months. However, all the pain and agony was worth it in the end. When I followed up with Dr. B 6 weeks later, I got the thumbs up to schedule surgery.

You still have to have fun even when you hurt. My favorite

 holiday is Halloween so I dressed up as Cinderella and my niece

was Alice from Alice and Wonderland. 

November 6, 2007 I had left scapular muscle reattachment surgery. 3 sets of drill holes were made into my scapula and Dr. B used sutures to reattach my lower trapezius muscle and rhomboids. You wake up feeling like you were hit by a truck. My parents and I lived in a hotel for a week so I could recover and get over the hump. After a week, it was time for the 9 hour drive home. It was the longest car ride ever. You hurt from the surgery, you're nauseous from the pain and on top of it, the roads are bumpy because there is road construction.

The muscle detachment. That white part is my scapula.

You shouldn't be able to see that.

After surgery. Yay! You can't see my scapula anymore.

I wore a sling for about 6 weeks. During those 6 weeks, you keep plugging along and take it day by day even though it's hard. There is a light at the end of the tunnel; sometimes you have to go through standardized protocal in order to get where you need to be. In my case, I had to go through the pain program to get back to orthopedics, to get the name of the super-specialist. Imagine if I hadn't listened to my body and listened to the pain clinic. You should read the blog "Come on Mom, Let's Go Have a Little Fun" because now you know what damage there was within both of my shoulder blades. When you read it, you will see that it wasn't a matter of a lack of effort or trying to be difficult, uncooperative or disruptive. I repeatedly told them there was something seriously wrong. I physically couldn't do the motions or exercises they wanted me to perform...they just didn't want to listen.



 Less than 3 months after being dismissed from the pain clinic
 I had surgery. You can see there is something obviously
 wrong on my right side ("chicken wing"). My left side looked
 worse than my right side before surgery. The pain clinic saw it.
They still said, "Nothing is wrong."