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/ 

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

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

It's Official! A Diagnosis 2014

Where do I even begin? All the confusion, frustration, and wondering why all these years finally has an official answer. The emotions are all over the board. From happy to sad to angry. At the end of the day though, the most important thing is there is finally validation because on January 7, 2014 I was given a diagnosis.

How it all played out: 

In November 2013 for no apparent reason my hips started moving in ways they shouldn't. I told my mom about it but pretty much kept it to myself because even I didn't understand why it was happening. I was also noticing I was getting dizzy more frequently whenever I would go from sitting to standing, my heart rate seemed high, and my heart was beating fast. When these symptoms worsened I started questioning again if there is some underlying problem. I began to research and the next thing I know, I was reading about Joint Hypermobility Syndrome and it was like the last piece of the puzzle was finally put into its place. I emailed my medical team and was told if I wanted peace of mind I could see a geneticist to see if in fact this was the ultimate cause of all of my symptoms. The next day I made an appointment with a geneticist and my appointment was scheduled for February 14, 2014.

As I sat on the couch reading about this syndrome, I can't even convey the "Oh my gosh" feeling that gripped me. For seven very long years it has felt like I have been given jigsaw puzzle pieces one at a time and when put together there were still pieces missing and the whole picture wouldn't appear. I felt like nobody understood what was going on with me (except my immediate family) and I felt as though some  family/friends were distancing themselves for a reason I'm not sure of. Giving the benefit of the doubt, maybe it's just people not knowing what to say. I know I've changed the past year and a half. There have been a lot of big medical things between surgery and travel that have occurred. In a matter of 3 months I went from doing relatively well in Colorado to finding out I have bilateral nerve injuries, I need a reverse shoulder replacement, I need scapular muscle reattachment surgery, and I need Botox injections that I am not comfortable getting. That's a lot to wrap your mind around and learn to accept. If my head wasn't filled enough thinking about the upcoming plan of treatment, the more I researched on Joint Hypermobility Syndrome the more intrigued and certain I was that this is the answer I have been looking for to explain ALL of my symptoms.

Sunday, January 5, 2014 the state of Illinois was going to be getting severe subarctic temperatures to accompany the already 20 inches of snow we have on the ground. Schools and businesses were going to be closed the next day. People were being strongly advised to stay indoors. The wind chill temperature was -47 degrees Fahrenheit. Sunday night my mom says to me, "Heck, maybe there will be a cancellation at the geneticists' office tomorrow. You should call in the morning".

Lots of snow

The trees sure do look pretty covered in the snow

Monday, January 6, 2014: Lady Luck was on our side. At 9:00 in the morning I called the geneticist to see if they had a cancellation. The receptionist said, "Let me put you on hold one minute". My heart is beating fast as I am pacing back and forth waiting for her to come back on the line. She came back on the phone-line and said, "Can you be here at 10:30?" I replied, "Yes" and the mad-dash to get out the door officially begun. My mom and I were "running" around the house grabbing all the medical binders and information that we would need. It's a good my mom and I have adventurous souls because man was it cold outside!!! We carefully made our way to the doctor's office. My nerves were racing.

After meeting with the geneticist I was told she would get back to me in the next 2 weeks. Everything was definitely indicative of a connective tissue disorder. She needed to go do her research and go through my medical records to determine what type.

Tuesday, January, 7, 2014 I received an email in the evening from the doctor. I was officially diagnosed with Joint Hypermobility Syndrome (JHS)/Ehler-Danlos Syndrome-Hypermobility Type (EDS-HT). This is a genetic condition in which your body lacks the protein collagen. The type I have is not life threatening. This syndrome causes your muscles, ligaments, tendons etc. to be weak and prone to tearing. Since the tissue is weak it makes your joints prone to subluxations/dislocations. It can also effect other systems in your body. This diagnosis explains ALL my symptoms. From the loose joints to the dizziness. I will be seeing a doctor to determine if I have postural orthostatic tachycardia syndrome aka POTS. There is no cure for EDS-HT...today. My initial reaction was validation, anger, and sadness. How could I've been told this is ruled out and then be diagnosed 7 years later? The diagnosis of EDS-HT is huge. All of the protocols for bracing and rehab would have been different after all of these shoulder surgeries. Even though the proposed treatment plan doesn't change, there is so much weight lifted off my shoulders knowing there is a very valid reason why all of the surgery would last 3-4 months and then fail. I wasn't going crazy all of these years and I wasn't putting on some sort of "charade". The good news is starting today we can look forward and put a better plan into place to get me better. It just goes to show you, never give up and be persistent when it comes to your health. Thank you to those of you that I know and those of you who I don't for all of your support!!

Here is a link if you want to read more about joint hypermobility/EDS-HT: http://www.ednf.org/hypermobility-type

My niece Emily and I at Christmas

Fundraising Link: https://www.giveforward.com/fundraiser/cn33/my-impossible-medical-journey-fund