Wednesday, December 17, 2014

Uh-oh...POP!

January 2013

A turn of events was soon to happen at the end of the month and I would be heading back to the wonderful state of Colorado for medical reasons (hopefully one day it will be for going on vacation). I was still in the shoulder brace from surgery on November 9, 2012 and physical therapy was soon to start. My doctor and physical therapist in Colorado extended the time they wanted me in the brace; usually you'd wear the brace for 6 weeks but I had to wear the brace full time for 10-11 weeks and then I was allowed to slowly wean from there. Since my prior history with shoulder surgeries doesn't have a good track record my medical team really wanted to make sure my tissue had time to heal. At this point in time I was still labeled as "collagen deficient" because the possibility of having a connective tissue disorder was supposedly ruled out in 2007. Dr. M suspected there was something more going on though so he implemented more precautions for after surgery. Normally with all the prior shoulder surgeries I couldn't wait to get out of the brace; however, this time was different. I physically couldn't get myself out of the brace.

When physical therapy started it was excruciatingly slow and painful. Red flags were going off in my head because I had never experienced this before. My Illinois physical therapist tried doing passive range of motion and he could barely move my arm without me having this insanely sharp/stabbing pain over the front of my shoulder; interestingly enough it's the same exact pain that I still have to this day. We tried reclining me in various positions on the table to see if that helped and there was no luck. My shoulder was so weak and killed. The weight of my arm was too heavy so I stayed in the brace whenever I was out and about; at home I just propped with pillows. As much as I love my physical therapist I dreaded going to therapy because it never ended well for me. Every time I left I would get in the car and cry from the pain. When I would get home I would put more ice on and go lay down. As the weeks went on there were tiny improvements but nothing to jump up and down about. I could go a little longer without the brace on but my gut still kept saying there's a problem.

When I woke up on Thursday January 31, 2013 I thought it was going to be just like any other ordinary day. Little did I know that evening I would be on an airplane flying to Colorado. I went to physical therapy in the morning and things were going as well as can be. We tried working on flexion (moving arm in front of you) with my elbow bent. We did active assisted motion (me moving my arm with the help of my therapist). Whenever we work on any sort of motion my physical therapist always has at least one hand on my shoulder to help give it stability. There was sharp pain every time we moved my arm but at this point my mindset was it's going to hurt no matter what. When we tried to move my arm forward all of a sudden there was a loud, audible POP! I felt my arm slowly drop down by my side with pain, my physical therapist's eyes were wide, and I started to cry. I knew something bad had happened because I am not one to cry in the middle of physical therapy. My physical therapist walked away for a couple minutes so I could compose myself. When he came back I told him to continue. I needed to know if it was the type of pop that would provide relief or if it was the type of pop where something bad had happened. Unfortunately it was the the type of pop that something bad had happened. I was concerned. It killed to move my arm and it felt like an anchor had popped. It was the same exact sensation that I had in the past when I've had anchors pop on me.

Fast forward a few hours and the next thing you know I'm on an airplane heading to Colorado. We had called Dr. M's office after my physical therapy appointment and there was concern something may have happened to the graft so they ordered an MRI and I would see Dr. M the following day. Shortly before we hopped in the car to head to the airport the staff in Colorado had called to tell us that Dr. M had something come up and wouldn't be able to see me. We already had bought our airline tickets so we were heading there no matter what. We decided I would be evaluated my his fellow instead. The following day was February 1st. My mom drove from Denver to Vail. As luck would have it, it decided to snow. Mountain driving is very, very different than driving in Illinois.

It's pretty with the snow
The yellow sign on the right says "Avalanche Area". It's a sign that
you will NEVER see in Illinois.
After my MRI I had my appointment with the fellow. My MRI didn't show anything too concerning. I told the fellow that it felt like an anchor had popped and I was told it would have shown on MRI. I disagreed because I've had an anchor pop twice in this shoulder and it never showed on MRI. The fellow tried to examine my shoulder and the same sharp pain kept reoccurring. He tried telling me he thinks I'm hurting because I'm guarding. I completely disagreed. As we were leaving my mom called my Illinois physical therapist and had the fellow speak with him. After talking to my Illinois physical therapist the fellow told me that he wasn't sure what was wrong with my shoulder and he was going to call Dr. M. I received a phone call and Dr. M was going to come back to the clinic to see me later that day.
Taking a break before heading to see Dr. M 
At the appointment with Dr. M he made a point of telling me that he came back just to see me. I was greatly appreciative and it was so nice of him. Dr. M gave me a shot of cortisone in the shoulder. At this point there was no definitive course of treatment. It was more wait and see what happens over the coming weeks. If I wasn't doing better in 3 weeks Dr. M said he might do an arthroscopy to look inside the shoulder joint to see what's going on.

After my appointment with Dr. M I met with the physical therapist to see if we should modify any of my physical therapy program at home. This was the first time that I had worked with this physical therapist; the first time I met him was in my hospital room after surgery in November. At therapy I remember going through my surgical history with him. He looked at the incisions on the front and back of my shoulder joints and I had chimed in, "Don't forget the two over my shoulder blades". The tank-top I had on covered my shoulder blades so he moved my shirt over and said, "Wow!" I laughed and said it's too bad I don't have some awesome story of how I injured them. We then proceeded to talk about all sorts of various tattoo ideas I could get so the scars were less noticeable. I still chuckle every time I think about this first visit. My therapy program didn't change too much. He wanted me to focus on isometric exercises to strengthen the shoulder with my physical therapist providing added stability with his hands which is a lot of what we were doing already. At this point he thought the issues I was having was due to muscle weakness. I thought it was contributing factor but the not the main problem. Time would tell over the coming weeks. Before I left he taped my shoulder up to see if that would provide any relief due to the added support and stability.
The tape job that the physical therapist did for me. It did help some.
I really noticed it when I had the brace off. Unfortunately I couldn't
wear the tape too long because adhesive and my skin don't mix well.
After my appointment at physical therapy it was time to drive back to Denver. We learned a very important lesson that day. When you look to the east and you can't see the mountains because it's all foggy...don't drive! It was the scariest drive ever. My mom and I didn't talk at all. It was snowing really hard. When we were in the valley the driving was okay but as soon as we went up in elevation it was sheets of snow flying across the night sky. It looked like ghosts. After a few hours in the car we finally made it to Denver and could breathe. We when we got into our hotel room we heard on the news that they had shut down Vail Pass; which is the pass my mom just finished driving.

This picture is from this year but it's the same thing that we saw in 2013.
Vail Pass was closed this time too. 
As we sat on the airplane flying back to Illinois there was a lot of thoughts going through our minds. Like always, all we could do was take things one day at a time. When we got back to Illinois physical therapy started up again for the next few weeks and the next thing we know we were flying back to Colorado...again.

http://www.pinterest.com/pin/448037862903301018/

Saturday, December 6, 2014

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/ 

Tuesday, December 2, 2014

Stability at Last!

Warning to the squeamish types, there are 2 graphic surgical pictures towards the end. I'll write another warning when you get close to them...

October 17, 2012

The flight to Denver, Colorado to go see Dr. M was surreal. So much had changed essentially overnight. It went from telling Dr. K in Illinois, "Hey, I think I need this particular surgery done" to him agreeing and telling me to go see Dr. M. Now here we are in Denver and in less than a day I will hopefully be finding out how to proceed forward.

The drive to Vail was like nothing I had seen before. I've never been on such twisty/curvy roads completely surrounded by mountains. It's definitely different compared to flat Illinois. One thing we didn't take into account at all was the altitude. That one came back to haunt us. In Illinois we live at 850 ft above sea level; Vail is at 8,150 ft above sea level. We were all sick from the altitude because we did nothing to prepare. With the way I love Colorado now you would never know that I absolutely hated it the first time I went out there.

The following day was my appointment. My parents and I looked like a bunch of zombies. The altitude really hits us. I'm sure when Dr. M walked into the room he was expecting rather happy people because my surgeons had already talked to him. Instead, Dr. M walked into a room of people that looked like the walking dead. It was awful. Looking back on this day we all laugh at it. When Dr. M tried to move  my shoulder a couple inches it started to subluxate. The amount of motion I had was essentially nothing. After the exam Dr. M started talking about various stabilization surgeries. He started saying how usually after the amount of stabilization surgeries I've had done they would normally do a shoulder fusion; at that point I interrupted him (completely out of character for me) to tell him I am not a good candidate to have a shoulder fusion due my scapular (shoulder blade) problems. He then started to mention the fusion again, and I interrupted him to which he said, "Please do not interrupt me". I apologized and he then said he wouldn't do a fusion on me because of my scapular dysfunction. So instead he suggested doing an anterior capsulolabral reconstruction with allograft; the same exact procedure I had printed off and brought to Dr. K. As a side note, I emailed Dr. M later that afternoon after my appointment to once again apologize for interrupting him. It was SO out of character. All is good; no hard feelings :)

The day after my appointment we decided to drive Independence Pass to the Continental Divide which has an elevation of 12,096 feet. It was BEAUTIFUL! It was also really, really, windy, and cold up there! The brace that goes around my waist didn't fit over my winter jacket and it was too windy/cold to not wear a coat. One of my "tricks" that I do to this day is wear shirts or jackets that have pockets on the front. That way I can stick my hand in my pocket which helps take some of the weight off the shoulder and it helps support the arm; if I don't have pockets then I will pretty much always have my arms crossed on my stomach.
My dad and I.
Independence Pass- Elevation 12,095 ft- Continental Divide
My mom and I
Me and dad
After arriving home from Colorado it was crunch time to get things done. Surgery was scheduled for November 9, 2012. I worked ahead in my calculus class to try to make it easier after surgery. We also had to throw a big birthday bash for my grandpa because he was turning 90! It was such a great day. We invited all his family and two of his longtime friends. He had no idea that all these people were coming. The look on his face was priceless. We took many pictures and have many great memories of that day. Since his birthday is in October, and he loves sports, we had a "Spooky, Sporty, Surprise 90th Birthday Party".

Part of my family :)
November 9, 2012
Next thing I knew it was surgery day. This shoulder surgery was by far the most painful surgery out of all the shoulder surgery I've ever had. Looking back I really think the awful recovery was due to the nerve problem I have because that didn't get diagnosed until March of this year. At the time I had the anterior capsulolabral reconstruction with allograft to stabilize my right shoulder we had no clue there was any sort of nerve issue going on. Logically it made sense that my shoulder barely moved because of the instability. Now I know that isn't the case because my arm motion is the same now as it was the morning of surgery two years ago; it only moves if my neck is bent way forward.

Motion morning of surgery 11/9/12

video
My motion today

2 GRAPHIC PICTURES BELOW

Even though my arm still doesn't move the way it should, I am so thankful it is at least stable. During surgery they put 4 anchors and 2 screws in to secure an allograft (cadaver) tendon in the front of my shoulder. It's the only surgery that has lasted longer than 4 months on me. I am over two years out from this surgery and it is still pretty stable. 

Waiting to be wheeled back to the operating room
The allograft tendon secured to the glenoid
The white in the shape of a backward C is the tendon that's stabilizing my shoulder
Definitely a hard recovery
As I've said several times in previous posts Colorado is beautiful. Below is the view from my hospital room. People pay lots of money to get that view from hotels; who knew you just had to have surgery and be inpatient?


During my stay in the hospital is the first time I met the the physical therapist that put my protocal together for when I would start rehab. Who knew I'd end up spending two months in 2013 and then two months this year in Colorado working with him. Between my physical therapist here in Illinois and the ones in Colorado I have a great team. I don't know what I would do without them.

One week after my surgery it was time to fly home. Physically it was the hardest flight ever. To anyone that has to fly on an airplane after surgery I would recommend bringing pillows so you can prop. It was SO hard to get comfortable! Landing was the worst part of the flight because of all the pressure that's put on the body. Even before this surgery I always dreaded the landings because my shoulders would shift out of place.

The landing
By the time we made it home I was beat. My bed has never looked so appealing!

Too bad I couldn't bring the Colorado view home with me to Illinois


Saturday, November 29, 2014

The Night My Right Shoulder Changed

First off, sorry for not keeping up on this blog. There has been a lot of current medical stuff going on so I've been writing more on that. Now that I have a better understanding of what is going on with my right shoulder, all the trouble I've been having with my right side since September 2012 makes a lot more sense. As a quick recap my right shoulder was stable for a record of 4 months in 2012. The end of July 2012 was ridiculously humid here in Illinois and my shoulder started subluxating for no apparent reason. It wasn't getting better and it was now a matter of trying to figure out what to do to stabilize it; but first, I was going up to Wisconsin to spend the day at the WI Alliance Burn Camp...

August 15, 2012

The experience of going to visit the WI Alliance Burn Camp in August 2012 is one I will never forget. Sometimes you get caught up in your own medical world and it's good to escape your world to see what someone else deals with. I met some amazing people, heard some very sad stories, and met individuals who have far worse scarring than I do. All of these individuals were so full of life. It was another reminder to not let your scars define you. It was a place where nobody cared if you had scars on your body and you just felt "normal". It was so cool to watch all these kids have a ton of fun and not worry about what someone else would think. While there I ended up helping out with setting up a couple activities. Me agreeing to do this was just a stupid decision and my stubborn ways got the better of me. Nobody there knew the extent of issues I had with my shoulders because I didn't want them to know. For once I just wanted to go do something I really wanted to be involved in and try to "forget" I have limitations.

The final day at the camp my mom and my nieces came with because there was a parade to honor all the firefighters, 1st Respondents, and other personnel who have helped all these kids from the fires. They also loaded up all the kids on the firetrucks and we honored them too. Those kids have been through so much. It was a great learning experience for my nieces. At this time my nieces were 9 and 7. They have grown up in a very medical filled house. It's good for them to learn that even though people might look different from the outside there's nothing to be afraid of; it's the inside that counts.
My nieces and I taking our picture in front of the flight for life helicopter

After a wonderful time at the camp we went back to our hotel. We went to Timber Ridge Lodge in Lake Geneva. There is a waterpark there which my nieces thought was amazing. It's a great place for kids and I would highly recommend it.
Smile for the camera :) 

My niece and I. Interestingly enough, this picture was taken 1 month before I
dislocated my R shoulder and went to the emergency room to have it reduced.
It is over 2 years later and my right arm still doesn't move like this. 
Week of August 20th 2012 my calculus class started up at college. Due to all the shoulder trouble I was having, I decided to only take one class. About a week after getting back from Wisconsin, I had an appointment in Illinois with Dr. K to evaluate my R shoulder. Before my appointment I had been researching shoulder stabilization surgeries and I came across a bristow-latarjet procedure. This is when the surgeon takes the tip of the coracoid process and moves it to the front of shoulder to act as a block. I printed off the information and brought it to my appointment. Sure enough my MRI arthrogram showed my capsule was all stretched out again and on exam I was really unstable. Dr. K thought the bristow-latarjet was a potential possibility. He wanted me to go see Dr. B in Kentucky to get his opinion.

September 15, 2012 I met with Dr. B. He evaluated my R shoulder too and confirmed it's unstable but the good news was that both of my shoulder blades looked to be in good shape. Yay! There's a first for everything! We talked about the possibility of doing a bristow-latarjet and he thought it was a viable option. While at my appointment I gave Dr. B a tiger drawing as a thank you for everything he has done to help me since 2007. I have to print the picture off below and send it to him in a Christmas card. Now that I think about it I forgot to send it to him.

Dr. B and I. I still miss this tiger :) 
My dad came with on this trip to Kentucky
When I got back from my appointment with Dr. B, a few days later I ended up seeing Dr. K because my R shoulder dislocated and I couldn't get it back in. Dr. K gently manipulated my shoulder and got it in without a problem. Then, on September 22, 2012 my mom, nieces, and I were watching my nephew at my brothers house. In the late evening, I was sitting on the chair with my niece Lizzy in my lap. I went to move my R arm across my body to rub Lizzy's head. My arm made it about half way and dropped. My shoulder dislocated again. It happened on a Saturday and Dr. K wasn't in. My shoulder was locked. I couldn't manipulate it and my mom couldn't manipulate back into place either. It was locked really, really bad and my arm was going purple. I had no choice but to go to the emergency room. The decision to go the emergency room was life changing. My R arm hasn't worked properly ever since.

At the emergency room the ER doctor called the orthopedic resident to come down and relocate my shoulder due to my prior surgeries and complex shoulder history. Before the orthopedic resident started putting my shoulder back in place I wished him good luck; I knew this shoulder was stuck. The resident pulled on my shoulder for quite some time. The nurse injected pain medication, and gave me strong muscle relaxants to try to get my muscles to calm down. No luck. The resident kept pulling on my arm as I was lying on my back. The pain was awful and my shoulder blade started feeling funky. I didn't want any damage to occur so I just sat up and said, "I'm leaving. I would rather go home with my shoulder out. Just get my arm in a sling and I'll wait until Monday to see Dr. K." The resident asked me to wait and he went and called Dr. K. It was really late at night. The resident came back in the room saying Dr. K said I have to relocate your shoulder and you can't leave the way it is. I rolled my eyes and started crying because the way the resident tried to put my shoulder in wasn't working. It was not gentle at all like Dr. K does it.

During the next round of " Let's Get Megan's Shoulder Back In Place" the resident brought in two other individuals to assist him. I was laying on my back and they wrapped a sheet around my upper body. The one doctor pulled my body to the left as the ortho resident pulled my right arm up to the side. There was also another person who was standing at my head with hands placed on my shoulders. The resident started pulling and the pain was excruciating. I remember turning my head to the left to "look away from the pain". I've NEVER experienced anything like this before. The doctor ordered new x-rays which showed my shoulder was now only subluxated. I refused to let anyone pull on me more so they got me into a sling and I left with my mom. The following day I felt like I had just had surgery. The pain was so bad. I literally slept the entire day and couldn't move my shoulder. Writing about this experience literally makes my blood boil. It has been 2+ years of trying to figure out why my R shoulder doesn't move properly. I went through 2 surgeries and my shoulder to this day still doesn't move. What aggravates me the most is I wanted to leave the emergency room so I didn't end up in worse shape. I should have listened to my gut and gone against medical advice.

That Monday I had to go to class in the morning. My shoulder was still killing me. I wore a brace that wrapped around my waist and locked my arm at my side. Before my class I started, I stopped by my teacher's office and talked to him about what was going on. I told him I had an appointment with Dr. K the following day and I didn't know what would be said. I've found throughout the years if you just talk to your teachers and keep them in the loop with what is going on with your situation, they will really try to work with you so you end up succeeding in their class.  

After class on Monday I went home and started researching more about various shoulder stabilization surgeries for chronic shoulder instability. It was that day where I found a procedure that I got excited about. It was an anterior capsulolabral reconstruction with allograft. The surgeon was in Colorado. I printed off the information and brought it to my appointment the following day with Dr. K. Dr. K evaluated my R shoulder and said it's sitting in a good position. I told him that's great but I can't move it and I went on to tell him how I've never experienced a shoulder reduction like that in my life and my shoulder kills. I then took out my printed information and said I came across this procedure. I think it's what I need done. I gave him the handout and he smiled. He said he knows the doctor in Colorado very well. They did their residency together and they lived across the hall from each other. He then said, "I think you need to go to CO and meet with Dr. M. He deals a lot of shoulder instability." When I got home from my appointment I called Colorado. I had an appointment with Dr. M on October 18th.
Funky depressions that appeared after I 
the emergency room visit. I've had these funky
depressions ever since. If anyone has 
any ideas of what they are please comment below.
The coming weeks leading to my appointment, I did what I do best to keep my brain occupied from thinking about the upcoming appointment; I focused on school and I tried to incorporate a little fun. Fall is my favorite season of the year. I love pumpkin patches, colorful fall leaves, and Halloween. There's a pumpkin patch not too far from our house that I love going to. The next thing I knew the weeks had flown by super fast and I was sitting on an airplane heading to Colorado to go meet with Dr. M...

My nieces and I
My sister, my mom, and me

Sunday, June 22, 2014

4 Months of Hope

March 2012

When you're healthy there is so much that you do in a day that you take for granted. Before I became injured at 16, I woke up in the mornings feeling refreshed and ready to tackle whatever the day brought. It wasn't until the past several years that my mom saying in the mornings, "I need my cup of coffee first and time to come into my body" even made any sense to me. I assumed everyone woke up feeling great and ready to go; boy was I wrong! Life threw me a curve ball and I learned first hand that my desire to do many things is there but bodies are stupid sometimes and don't always cooperate.

Sometimes life throws you in a cycle that you didn't even realize was occurring until you are well into it. You look back on the your experiences and you realize that your life has been anything but normal and you wonder how the heck you survived it all. For me, I was 22 and I still didn't have a drivers license, I wasn't working, and I wasn't on the "4 year college plan". Yes I had 2 associates degrees but I still wasn't able to transfer into a 4 year school to get my bachelors. Though, after the last surgery on my right shoulder in March 2012, for the first time in years I had so much hope that I could finally spread my wings and pursue some of my dreams.
  
Now that the shoulder surgery was done the rehabilitation process on both shoulders/scapulas could begin. There is a lot of work that goes into this when your shoulder girdle hasn't been functioning properly for a long time. As the weeks and months went on, my strength and range of motion increased. It was incredibly weird to have shoulders that actually felt halfway "normal". At my best in pt I was doing 8 lb weights, my motion was just about to shoulder level, I was able to do scapular exercises with resisted weight, and a bunch of other exercises that I hadn't been able to do in the past; it was like a whole new world of exciting shoulder exercises had been opened up for me.

In addition to all the fun shoulder exercises, I was able to regain the ability to draw again with some modifying. I couldn't draw on a table but I could sit on the couch propped up and draw in my lap. Before my surgery I had started working on a tiger picture for my mom for Mother's Day but once surgery happened I had to put it to the side since I'm right handed. Fortunately I was able to finish the tiger on Mother's Day; talk about cutting it close (I'm sure she would have forgiven me if it weren't done in time; she's nice like that).


As things progressed in a positive direction, I felt like I could try to start planning for the future. It was very odd feeling healthy and unhindered; it was so foreign to me that it made it scary. Don't get me wrong, I was happy to feel good but it just goes to show you how when you've been in a cycle of having illness/injury take over your life you have to basically relearn how to live like a "healthy" person. All of a sudden I had the ability to make choices for the future and I didn't have to revolve my decisions around surgery. Heck, what a concept!

Come May 2012, I was feeling so good that the thought of maybe being able to finally get my drivers license in the Fall had even crossed my mind. I decided to finally apply to be a camp counselor at a burn camp for kids that would start in August which was something I had wanted to do since 2008 but was never physically in a position to do so. I also scheduled to meet with an advisor at the University of Illinois-Chicago on May 31st to see about applying for their Kinesiology program. This was the first four year school that I actually went to visit since graduating high school in 2007.

Before going to meet with the college adviser, I had to meet with Dr. K on May 24th to check my shoulder for a standard follow-up. As usual my mom came with me and it's a good thing she did because we ended up sitting in the exam room for 2 hours. It got to the point where we were feeling caged in and getting rather giddy. For entertainment, I decided to sit on Dr. K's chair with wheels and push myself across the floor with my feet, my mom and I ended up playing the children's game "I Spy" and then we had the brilliant idea to blow up a glove into a "chicken balloon". I asked my mom if she had a pen and she did. I drew a little face on the glove and then my mom said we should write, "Have a nice day -Bon Jovi" and hide it in the corner next to the sink. So we did...why wouldn't we?


When Dr. K walked into the room he walked
walked over to the sink to wash his hands. Then he
saw the glove. He picked it up with a serious look
on his face and then looked at my mom and I.
Since he seemed ticked off my mom and stared back
at him with a straight face and we didn't say a word.
In that moment, we didn't want to own the chicken.
He kind of had a half-grin on his face and placed
the "chicken" back on the sink. From there he started
examining my shoulder. Unless he reads this post, as far
as I know, he doesn't know we blew up the chicken. 
May 31st my mom and I met with the admissions counselor. In the morning I woke with my right ankle kind of swollen but I thought it was due to the dampness. I didn't really think it was anything to worry about. When I met with the counselor she recommended that I apply for the Spring 2013 semester because I needed to take calculus and general biology. My GPA was pretty good considering at that point I had had 16 shoulder surgeries since starting college. I was at 3.65 which I was happy about. The next morning I woke up to a very swollen and bruised outer ankle. It was directly over the area that I had ankle surgery on. Go figure! Now that the shoulders were feeling good a different body part decided to act up. It's always something.

I met with my ankle orthopedic and basically my
tendons and ligaments were really inflamed...obviously.
Treatment was a walking boot for 2 months and pt.
Now we get to rehabilitate both shoulders/scaps and
an ankle. How fun!!! 
That summer I decided to take calculus. To this day I don't know why I thought taking summer calc was a good idea. It was the death of me. I had no life. It was so hard. I was studying all the time and I was not grasping the material since the pace was too fast for me. I wanted to rip my hair out. Math is not my strong suit. I decided I was best off withdrawing from the class and taking it in the fall instead.

Now that life wasn't consumed by calc (oh thank God) I went back to drawing. One reason was because even though I was accepted as a camp counselor, I had to decline because of my ankle. Since I still wanted to be involved with the camp in some way, I decided to draw a picture and donate it to the camp to raise money. I ended up getting a print of the tiger I drew for Dr. B and then I drew a different tiger for the camp.



If there's anything that I've learned over the years, when plan A fails make a plan B. As my mom said when she was diagnosed with her cancer, "Sometimes we can't control what happens to our bodies so take control of the things you can". There are too many times in life when things don't go according to plan. Sometimes you just have to get creative because one way or another there is a way to be involved in something even if it isn't ideal.

When mid July hit I was ridiculously excited. For the first time since 2007 a shoulder surgery had lasted longer than 3 months on my right shoulder. YAY!!! This was month 4 and it was a record. I couldn't believe it; now I just had to get to months 5, 6, 7 etc. I continued going to therapy three times a week and things were still moving in a positive direction. THEN, the last week of July came around. Illinois was insanely humid. I went to therapy and my right shoulder was hurting  the most it had since surgery but still not as bad as it was presurgery. That day we took it really easy; I wasn't the only patient feeling the effects of the high humidity.

The next day while I was drawing the picture of the dog below for a customer, I clasped my hands together and stretched them in front of me down towards the ground just to stretch a little. When I did this, I felt my right shoulder subluxate out the front and it then went back into place. The first word that came to mind I can't write in this post. Let's just say it started with F. I didn't say anything to anybody. When I went to therapy the next day I just said I was still hurting so we took it easy again. I didn't say anything because I was embarrassed. How in the world do you go from feeling stable and the best you've felt in a long time to waking up the next day with your shoulder unstable?? Three words: connective tissue disorder (I wasn't diagnosed with the hypermobile type of Ehlers-Danlos Syndrome yet in 2012). I think I was in shock or denial when I subluxated that week. I was heartbroken; I knew it was only going to get worse from there because that's what happened all the other times.


After two days from the initial subluxation I knew I had to say something to my parents and my therapist. When I went to therapy my awesome pt asked me how I was feeling and I nonchalantly just said, "Ummm yea, the right is subluxating out the front...again." I showed him and told him it happened the other day but I didn't say anything because I was hoping it was just a random fluke but it has happened a few more times since then. My therapist kept his composure and decided if it was still acting the way it is in a week I need to go back to Dr. K to be evaluated.

The following week I scheduled an appointment with Dr. K in August because trouble was brewing in my right shoulder. Looking back, the inflammation in my right ankle seems to have been a blessing in disguise. By the time the end of July hit, my ankle was doing better but my shoulder was subluxating again. If the ankle issue hadn't happened I would have accepted the camp counselor position at the WAFS Burn camp and had to cancel at the last minute which would have left those people in a bind. I do believe that things happen for a reason. The WAFS Burn Camp was so gracious and thankful for the drawing/print that they invited me up to the camp along with my mom and nieces. I will talk more about that in the next post along with what happened when I saw Dr. K.

Those 4 months were the best and most hopeful months that I've had in a long time. If you've never experienced it, it is very hard to go from high hope to oh my gosh there is a serious problem essentially overnight. I hope I can experience that hopefulness again one day soon; this year has been so hard and long.

Lock us in an exam room for 2 hours and it's understandable why we are so easily
amused. In this picture we were NOT in a car accident. I was braced from surgery on my
 left scapula and my mom just happened to braced from surgery on her right shoulder
by Dr. K in Jan. 2012. Now just picture this awesomeness walking around everywhere.
 We already get enough looks walking around since mom is only  5'5 and I'm 6'. Let's slap on a
 couple shoulder braces to draw more attention. After seeing this picture, you might
 understand why we started to get silly and blow up chicken balloons from a  glove.
This picture makes us laugh.  

Saturday, May 31, 2014

I Wish I Had Eyes in the Back of My Head

I figured I should probably compose a present day update on here since it has been a while since I have written anything. May was a very busy month and rather stressful because I was going to be traveling to Boston, Massachusetts to meet with a new surgeon that I was referred to. At the beginning of the month my mom and I traveled to Nevada  to visit my grandparents. It was a very nice visit and the timing of going was perfect since I had my doctor appointment a week later. Going to Nevada was a great distraction and my whole body felt better from being in a climate with low humidity. I must say, it was very odd traveling without all of my medical records!

I loved the dry climate! The view is pretty good too.

My grandma; I definitely don't get my height from my mom's side of the family
My grandpa. We were eating lunch at this really good Chinese restaurant.
They had some pretty good sugar doughnuts. 

Once we returned home to Illinois it was time to switch gears and get ready for the doctor appointment in Boston. Fortunately all my records are pretty much together in binders so the packing aspect of things didn't take long at all. When it comes to getting ready to meet with a new doctor, it is more mental preparation for me; making sure I know what points I want to make, what questions I want to ask etc.

At the appointment with Dr. W it was decided the reverse shoulder replacement was NOT a good option for my right shoulder joint because my right shoulder blade is not moving properly at all and there is the fear that I will end up dislocating. It was made clear to me that you do not want to dislocate with the reverse replacement. The good news is Dr. W did propose an alternative option but before making an official plan of treatment he wants to contact my other doctors to get more of my history. The main goal at this point is to improve my quality of life by getting me in less pain and hopefully help me gain a little more motion to make me more functional. I am hoping to hear from somebody in the next week or so with how to proceed.

Where I met with the doctor
Since Dr. W did not need any further testing, my mom and I were able to take the next day and explore Boston a little bit. Boston is a very clean city and all the people we interacted with were very nice and had amazing accents. We took a trolley tour around the city and did a boat ride on the bay to see the skyline. We also ate at a food truck for the first time ever. It was pretty good too. We both had a barbecue pork sandwich and a side of corn bread. The owner had a sense of humor. He told me his sandwiches will make all my pain go away. I told him he should give me a lot then haha. My mom and I had a very nice day. Boston is one of those places that we want to go back to and visit because there is so much history and various sites that we didn't have time to see. I guess we are going to have to go back one of these days.
My mom and I 

Eating my sandwich. It was very
nice outside. 
Boston airport was unique compared to the other airports we have been too.
They have rocking chairs!
We've been home from Boston for almost 2 weeks. I've been thinking a lot about everything that was said in regards to my shoulders/shoulder blades and I feel like I am an ant at the base of Mt. Everest trying to climb to the top. There are so many issues that are wrong between nerve issues and all four joints that I don't even know what would be the best way to address things anymore. At my appointment I said we have to address my right side because it is worse but since the exam on my left side it has been hell. For the first time since 2012 my left shoulder blade is killing more than anything on my right side. Yesterday morning when I got up my scapulas were hurting me a lot. I was up the entire night from pain and not being able to get comfortable. I had my mom take a picture of me pushing against the wall because it is a type of test that is used and I knew something just didn't seem right. After seeing the picture, I wish I had eyes on the back of my head. I had no clue my shoulder blades looked like that when I push against the wall. It explains why I push doors with my feet, open doors with my feet, can't pour a half gallon of milk, can't wash my hair without bending over, and why I have lost a great deal of motion.


This picture is from Sept. 2013. Notice the right shoulder
blade is in a good position and is not sticking up. The
left shoulder blade is just protruding a bit at the bottom.
This was the mental image of what I've had in my head for
the past 8 months. 
May 2014. Looks much different compared to
September. There  are now two funky depressions
on the left which are either detached or loose
muscle attachments. The right one is now
protruding at the bottom and has its own depression.
Side view of my scaps. I have no clue what
will be done with them. I have to send an
email to my doctor next week. 
Now that I see what my shoulder blades looks like in the above picture, I feel like a complete idiot at my doctors appointment. I told Dr. W my right shoulder isn't in that bad of shape. Ha! Oh yes it is.
That's my motion when I try to raise
my arms up with my elbows bent. You
can see the left scap sticking out.

This is only how far my arms move in front of me. Pretty pathetic.
Everything I do in the day is all elbow motion. 
How my scaps look when trying to raise
my arms in front of me with elbows straight. 
So since yesterday morning I've pretty much been in shock over my scapulas. I do not understand why things have deteriorated the way they have in 8 months. In my emails to my doctors and other medical personnel I've been saying I'm getting worse and can't do so-and-so exercise but none of us knew this was going on with my shoulder blades. It is times like this where having your doctor is in a different state is huge downfall. Emails don't convey the true reality of a situation. 

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