An Important Lesson 2013

Okay, I lied. This post was supposed to be about what happened in 2011. Before I do that, I have to discuss something more important first. I've learned a very hard lesson. Just because you are a relative to someone doesn't mean they have your back. Hopefully people can take an important lesson away from this post.

"Don't judge a book by its cover." I've heard this quote a lot growing up. It applies to many various aspects of life. It's one thing to judge a book. It is another to judge a person. Books don't have feelings. Human beings do. My advice would be, before you decide to start judging what a person is going through, you should try to imagine what life is like in that persons' shoes. I appear fine on the outside when I have a shirt on that doesn't show my shoulders; however, once I have a shirt on that shows my skin, the scars that are exposed tell a whole different story.

The past week and a half has been very hard. It is always hard physically, but it has been exceptionally hard mentally. First I didn't get good news from my surgeon in Kentucky and then a not so nice "family" member decided to talk garbage behind my back. I am so thankful for my cousin. He is like a superhero because he had my back and came upfront about what this "relative" said. Everyone is entitled to their opinion with what I am going through. All I can say is I have every op report, every test result, every MRI report, every scar etc. Every medical professional I work with believes me which is what matters the most in the end. They are the ones who will be working to get me better. There is no way to act this out and I don't know why anybody would want to. It is my personal belief if you don't have anything nice to say, don't say it. If you are going to talk behind someone's back, make sure you have ALL of your facts straight. Finally, make sure you won't regret the things you say.

In previous posts, I've mentioned my family started a fundraiser to help offset the cost of all the past and future expenses due to travel, physical therapy, testing, and surgery that have occurred over these 8 years. It's completely understandable. Unless you are a millionaire, there is no way you can keep up with all of it. This "relative" I mentioned is a piece of work. He says, "My fundraiser is a scam. I'm only looking for money because I'm not on my parents insurance." Last but not least, "If I really need money, I should stop the charades and get a job." To this person, if I could work, I definitely would be. Do you really think I am proud to be 24, need more surgery, unemployed, dependent on my parents, and up to the ceiling in medical bills? I have been trying so hard for a number of years to get better, it is so insulting to hear some insane rumor like this. What hurts even more is this person is supposed to be considered "family".

With my situation, I get it is hard to understand. I even have hard time trying to understand why all this bizarre, rare stuff is happening. This individual doesn't realize I AM on my parent's insurance. They don't realize I fit the symptoms of having a soft tissue disorder due to all the surgery to stabilize my joints; since I don't fit a specific category I am just labeled as, "collagen deficient". When this person started talking behind my back, I hadn't even met with my shoulder blade surgeon in Kentucky yet. They probably don't even realize I was diagnosed with chondrolysis in my right shoulder. Chondrolysis is an irreversible rapid destruction of the cartilage in the joint which causes severe arthritis. We don't know what caused the chondrolysis to occur, but we do know the chondrolysis is what caused my shoulder to deteriorate in less than one year. Instead of strictly needing to have the reverse total shoulder replacement in 2014, I also found out I need to have left scapular muscle reattachment surgery again. The muscle transfer that I had done in 2011 loosened, as well as the repair of one of my other muscles. I am essentially "programmed wrong". My nerves are sending a signal to my muscles to stay in a constant state of contraction rather than being relaxed which has caused my muscle reattachments to loosen. I don't even have the correct words to describe how hard the beginning of next year is going to be. We have to fix my left shoulder blade first. This will probably be done in January in Kentucky. I will be braced for 4-6 weeks. My right arm literally only has motion at the elbow and wrist. How in the world am I supposed to rely on that arm to do every day tasks? Even with the shoulder blade injury, I still use my left arm for everything. Six weeks after the shoulder blade surgery I will need to have botox injected into my latissimus dorsi muscle. The botox will "paralyze" the muscle causing it to stay in a relaxed state. This way when I have the reverse shoulder replacement in Colorado on my right side probably in April, my latissimus dorsi muscle can't damage the newly attached muscles by contracting. After both surgeries are done, I will stay in Colorado for an extended time doing physical therapy for both shoulders. Like I said, next year is going to be very challenging.

The primary purpose of this was to give a medical update, as well as to enlighten people about the importance of why it is so important not to judge someone. Especially when they have some sort of medical condition and they do not know the whole story. Those judgments that are made are the lowest blows possible. I'm hoping people will think twice before they start spewing hurtful, inaccurate, insulting information that is not true. I also hope that people who have had hurtful things directed towards them can try to not focus on the negative and think about all those people in your life that sincerely do care about you and have your back. I am NOT putting on a charade. Believe me, I have to live with this situation every day of my life. It is not easy. With chronic medical conditions, it is these type of people that make it hard for anyone to understand what it is like to have a chronic condition. Instead of asking questions to learn more, these people decide to make assumptions instead. Just because a person looks "normal" on the outside does not mean anything about what may or may not be going on in the inside. What about people with mental illness, soft tissue disorders, cancer, arthritis, cardiovascular disease, stomach problems, obesity, inflammatory disorders, how do you judge them? Do you think people who have chronic medical conditions are happy that their condition has brought them to a point where they have to ask for outside help through donations? I know I'm not. So the next time you decide to say something inaccurate, think about how it is going to effect that person and imagine what it is like to live life in their shoes.

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

A Big Ol' Mess 2013

Chronic ongoing medical problems can cause a lot of stress on relationships with friends and family. I don't think it is something that happens on purpose. I think it is something that comes with the territory when it has been going on for a number of years. It takes a lot of effort to keep those relationships strong. There are feelings of guilt, jealousy, tension, not being able to relate, not wanting to be involved, confusion, not being able to physically help, frustration. The list goes on. From a patients perspective, I think guilt is something we feel a lot. It's not a matter of wanting to be the center of attention, or being spoiled compared to others. It's more an issue of we might need more help because we physically CAN'T and out bodies need "down time" to get through the day. There is a HUGE difference.

Ex: my sister needs a wrist fusion surgery. She has needed it for quite some time. Of course she hurts (who wouldn't) and it obviously limits her ability to do certain tasks; however, in the big picture she is still very functional. Getting dressed doesn't cause a problem, it doesn't effect her entire upper body, she can drive, she can work. She is way more independent than me. My sister lives in our house with her two children (my nieces). When she has surgery that means my mom and I primarily inherit 3 individuals to take care of. Plus my soon to be 91 year old grandpa. I'm very limited in what I can do to help out which means my mom is the primary caregiver. My mom has her own medical conditions that she deals with daily. I feel a ton of guilt that my sister hasn't had her surgery done yet. I can't magically make my body physically able to do things that I can't or shouldn't be doing to help out in a way that is needed to help take care of a post-op person plus a 7 and 10 year old who have their own activities and schedules. It is really hard when you are put in this type of position.

Since my last post on September 12th I've had my 8 year injury anniversary on September 21, 2013, had 2 doctor appointments, been to Cleveland, Ohio and back to Illinois, got a lot of information about what's going on with my shoulders, and have just about made up my mind with how to proceed.

On September 23, 2013 my mom drove me to Cleveland, Ohio to get a second opinion about treatment for my right shoulder from Dr. G. It was one very long day. We were up at 4:45am. In the car by 5:45am and didn't get to Ohio until about 3:30pm. This gave me enough time to shower, chill out and get to the doctor by 5:15. It was so busy. Luckily, Dr. G couldn't have been nicer. Coincidentally he was trained by my Colorado doctor, Dr. M. At the appointment, Dr. G tried to examine my shoulder and was very unsuccessful. Since the 23rd I haven't been able to bend my elbow up all the way to my shoulder. Tasks such as eating and brushing my teeth have to be done with my left hand because I can't reach my mouth with my right. Dr. G is going to call me back with his opinion. He wants to talk to Dr. M and consult with a few doctors that he knows. I respect this a lot. I'd rather a doctor take the time to get all his facts straight before giving me their opinion.

 Elbow still doesn't bend past here

After the appointment with Dr. G
Luckily I can dangle again and the
above picture only lasted a couple days.

Ready for the car ride home to Illinois. I had 5 different

pillows to prop with to be as comfortable as possible and have

support for my shoulder with all the bumpy roads.

September 26, 2013 I saw my long time Illinois doctor, Dr. K. He is in agreement with Dr. M that I should have the reverse total shoulder replacement done. Dr. K felt bad telling me this because I am only 24 and the replacements only last approximately 10-15 years. Like I told him, I am young but my shoulder is old. My shoulder is non-functional and it kills. Dr. K then said, "Your shoulder is ancient. It is that of a 78 year old woman". He couldn't believe what my MRI looked like. Not only did it show all of the arthritis, but it also showed inflammation is within the bone. When Dr. K was in my shoulder in March of 2012 I had moderate chondromalacia (softening of the cartilage). In a matter of a year I went from some soft cartilage to bone-on-bone arthritis. Dr. K then said to my mom and I we might want to go to France because they have been doing the procedure a lot longer than the United States and it might be cheaper than Vail, Colorado. When you deal with chronic medical things, you prepare yourself for various scenarios. Hearing you might want to go to France was not one of those scenarios we prepared ourselves for. We were both shocked. I highly doubt we will go to France but I guess you never know for sure.

Yesterday I was washing a cup and the handle broke off. The little bit that my shoulder moved forward when the handle broke, caused my shoulder to subluxate and my muscles to freak out. Trying to do a basic little task shouldn't cause my shoulder to act the way that it does. It is like a ticking time bomb. I never know when it will go nuts.

The muscles surrounding my shoulder and in my neck

tighten so bad. When my shoulder reacts like this, I can't

begin to express how much it hurts. 

So at this point I am pretty sure I am going to have the reverse total shoulder replacement. The way my shoulder is now is not an option to live with. Even though there is a relatively high complication rate (10-15%) then you add in my history, I think I would regret not having the procedure done knowing I have this option. I know my shoulder has the potential to have more function than what it does now. I was told by my CO therapist that in order for this procedure to be successful I have to get my deltoid as strong as possible. I honestly do not know how I am supposed to strengthen. I have an email in to Dr. M to see if there is something to ease the pain within the joint to allow me to strengthen. Right now any sort of muscle contraction causes nothing but sharp pain and I constantly sit forward it seems. So until I know when the surgery will be done or unless something crazy happens, I will be trying to write about more about the story of how I got to where I am today. I left off in 2011.

Here's a short 5:40 second YouTube video that was made.
23 Orthopedic Surgeries More to Come...Please Help!

A Difficult Decision 2013

I can't believe it has been over a month since my last post. The past several weeks have been very busy and my life has been consumed with unexpected medical things. In the book Oh, the Places You'll Go! Dr. Seuss talks about a place called, "The Waiting Place" where people are just waiting. I feel like I live there. Lately I've been waiting for answers from doctors, waiting for test results, waiting for appointments, waiting for second and third opinions, waiting for an easy answer, waiting for someone to relate to, waiting for people who can relate, listen and understand what life altering decisions I have to make at 24. The list goes on and on. Just waiting doesn't sound like a big deal but depending on what you are waiting for, it is. It can be really stressful.

Let me catch you up on how I landed in "The Waiting Place". Up until August 9, 2013 my right shoulder was definitely being problematic but since that day it has made a major turn for the worse. At 3:30 in the morning, I woke up on my right shoulder and had this intense burning sensation going up the right side of my neck and over my shoulder. The pain was way worse than my usual "normal" pain. I knew my shoulder was sitting forward just by the sensation which made me hesitant to even move. Just trying to roll onto my back and get into an upright position caused the burning sensation to increase up my neck and cause pain across the upper right quadrant of my chest. When I finally got to my feet, I was hunchback, my right arm was really heavy and my muscles were in an insanely tight spasm. All I could think to do was go into my parent's room for help.

Immediately my parent's knew I was having a problem because I never walk into their room for help in the middle of the night. To their surprise, the pictures below is what they woke up to. There wasn't a ton they could do for me other than help me get propped on a ton of pillows, get the heating pad for me and get me my medications. My dad tried to massage some of the knots that had formed, but any pressure just made me feel worse. Going to an emergency room wasn't an option because ever since my last visit to the emergency room in September 2012 my motion has been very limited and I'm now scared it will get worse. Since September 2012, I am even more hesitant to go to anyone other than my physicians who I trust.   



Waking up like this is never pleasant. My arm was stuck in this position.
Putting a sling on wasn't helpful because I couldn't bring my arm in close
to my stomach.  



Side view

After this incident, my parents and I decided it was in my best interest to have the EMG test repeated in Colorado where the neurologist works with Dr. M. My EMG was scheduled for August 28, 2013. The day of the EMG couldn't come soon enough. Each day my motion became less, my pain increased, and I was less capable of doing my regular tasks on my own due primarily to the lack of motion. I have/had to wear the sling on my right side for extra support when I go out and about. I have had to sit and relax to get me through the rest of the day. When you combine all the issues I have going on my right side with the issues I have on my left side it makes it very difficult to do simple tasks. My "good" left shoulder has posterior instability and a possible muscle detachment at the bottom of my left scapula making it hard to wear a sling because of the pressure on top of my left shoulder. Wanting to be as independent as I possibly can, I can't begin to describe how hard it is when neither shoulder functions properly at all. All motions have to come from my elbows. Our flight to Colorado on the 27th couldn't come soon enough.

August 28, 2013 was the day we had all been looking forward to, to have the second opinion EMG test. This appointment was 100% different than what I experienced in Illinois. This doctor was extremely nice and was extremely thorough with the test. He tested my left arm first and I knew immediately he was doing the test correctly. Unlike the other doctor, this doctor tested the nerves in my hand, forearm, upper arm, shoulder and over my shoulder blades in both arms. With all of the various issues I have going on in each shoulder this test killed like no other. The neurologist knew it was severely hurting me and for the first time ever a doctor actually gave me an out and said I could come back at a later date to have the right side tested. I told him, "No. It's okay, I need the other side done more than I need my left so just finish the test." He then told me it's not okay with him how much I was hurting but proceeded on with the test like I had requested. I opted to have the test completed all at once because I was seeing Dr. M the next morning and needed to have the results. Out of all the doctors that I have seen over the years, this was one of the first doctors that has really looked at the big picture and acknowledged how all of these issues have literally put my life on pause. He is right.

 L. scapular winging just lifting my arm forward. 

 Something's not right.

L. scapular winging when I push the wall.

The next day I saw Dr. M in the morning. Compared to when I last saw him on July 2nd, the regression of my shoulders is mind-blowing to me. The first neurologist who said there wasn't a problem with my nerves and did the test wrong was completely incorrect about his assessment. The second EMG test showed there is an issue with my long thoracic nerve on both shoulders and an issue with my suprascapular nerve. So much for this being, "A strictly mechanical orthopedic issue." Besides the nerve issue, my motion sucks. My right shoulder is basically non-functional. I get my hair up by bending over. Get dressed by bending over. Wash/dry my hair bending over. Climb on chairs to reach things out of cabinets. It is annoying and drives me nuts. Dr. M ordered X-Rays which showed I have no joint space in my right shoulder which means when I move, my motion is bone on bone. To further assess it an MRI was ordered for the next day. Someone would call me the following week with results.

The chart below compares the motion I had on each shoulder July 2nd and what I have now.
 

	R. Shoulder 7/2/13	R. Shoulder 8/29/13	L Shoulder 7/2/13	L Shoulder 8/29/13
Forward Flexion (moving arm in front of you)	20 degrees	5 degrees	90 degrees	60 degrees
Abduction (moving arm away from your side)	30 degrees
External Rotation	20 degrees	0 degrees		20 degrees

Unfortunately it was a holiday weekend so it was an extended wait for the results of my MRI. To distract our minds my mom and I would play cards outside by the pool, go for short walks through the village, sit on a bench listening to the water rushing through the stream and watch the squirrels harvest to prepare for winter. We also went on a few car rides.

My mom and I were going to go to the Continental Divide

but we couldn't because we couldn't see the mountains

 clearly due to the storm clouds that had rolled in. 

This is Gore Creek. It runs through Vail Valley. When we

left the first week of July all of these rocks were submerged

under the water. 

The results are in. I talked to Dr. M on the telephone the following week. He could not have been nicer. I think this was the first time he actually "met" me because it was strictly a one on one conversation and I didn't have 4 other pairs of eyes staring at me as I tried to explain my symptoms. The main showing on the MRI of my right shoulder is the arthritis has progressed since April. It also shows thinning, fraying, fissuring, swelling and is basically just a mess to sum it up. I have diffuse grade 3 arthritis on the glenoid (socket) and diffuse grade 3 and 4 on the humeral head (ball). The only recommendation that was offered is a reverse total shoulder replacement. This procedure is typically done in the elderly. They consider patients who are 50 years old as young candidates who have the procedure done. I am 24. Dr. M told me I am so young to have to need such an operation. I agree with Dr. M; however, like I told him, I am young but my shoulder is not. My shoulder is non-functional. I know I will never have a normal shoulder but I do know this shoulder has the potential to be more functional than what it is now.  

Right now I am kind of in a holding pattern. I don't want to jump into anything to quickly without really thinking things through. The reverse shoulder replacement would permanently alter my anatomy. I am not having my procedure done in Texas but here's a basic link that describes the procedure; (it is strictly animation pictures/video) http://www.methodistorthopedics.com/reverse-shoulder-arthroplasty At the end of the day this is a big decision that I have to make. If anyone has had this procedure done, I would love to hear your feedback on it.

A fundraising page was created to help with medical expenses. If you would like to donate follow the link below. Thank you!!

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

Embrace Your Challenges

Challenges are something that all people from different walks of life experience. What seems like a small challenge to one person may be a huge challenge for another. One of the great things about being human is you can learn to adapt to these obstacles that are presented to you.

I'm sure I'm like most people who get aggravated when an activity they enjoy doing is "taken away" because they can no longer physically do it anymore. It is a hard bullet to bite. Sometimes those activities we enjoy doing are the ones where you can completely clear your mind and not think about any worries that may be going on. For me, soccer is what got me through the hard days of seeing my mom sick from chemotherapy treatments. Soccer was more than just a game in our house. When I first became injured back in 2005, it was devastating. I was looking forward to my mom coming to my games in the Fall since she was done with treatments. From Sept. 2005-Dec. 2006 getting back in the game of soccer was my motivator. When the realization hit me in 2007 that I would never get back on that field I was lost.

Even though I never got back on a soccer field, I still practiced in the yard. To this day soccer is a part of my life. I had so much passion and love for the game for 12 years that I couldn't completely walk away from it. So, I learned to work that soccer ball with the body that I have. I still mess around on my own in the yard. Learning to shoot the ball after the ankle, knee and hip surgeries was a huge challenge. If that isn't challenging enough I had to learn to shoot without using my arms for balance. That was a huge obstacle. A lot of time, patience and core workouts later and I HAVE learned to shoot with zero use of my arms. In addition, I learned to juggle the soccer ball using my legs without hurting my shoulders because I have them either locked at my side or across my stomach. There is a satisfaction knowing I didn't lose all my soccer skills. I might not be able to run (due to shoulders, not legs) but I can still beat my nieces with footwork :)

Can still juggle with my legs. Yay!



During the years of not being able to play soccer, drawing showed up in my life. Besides getting all sweaty, an adrenalin rush, and a few bumps and bruises along the way, drawing takes on the role of what soccer did for me. When I draw I am completely focused on the task at hand and I am not thinking about anything else. It is a good healthy, stress reliever.

Chimp I drew for one of my nieces

From September 2012-April 2013, I did not have enough use of my right arm to draw. I couldn't even feed myself with my right arm for that matter. I was livid. I felt like I had no outlet whatsoever. So, I gave myself a new challenge: draw a picture with my non-dominant left hand. I found a picture of a snow leopard and went for it. I did not have high expectations. It was very difficult drawing with my left hand. I had to basically train my brain to not draw like a right handed person. Everything is opposite this way. Below is how the snow leopard turned out.

Proportions are a bit off but for attempt #1 at drawing non-dominant lefty I'm pleased

Having hobbies and activities that you like to do "taken away" is hard but to have basic daily tasks taken away is even harder. I think at times it would be easier mentally if I had never been able to do certain things in the first place; this way I wouldn't know the difference and I wouldn't feel the impact of loss. These shoulders and shoulder blades have forever affected my life. Ex: driving, writing, lifting my arms to above my chest, putting a shirt on, reaching in front/across my body to shake someone's hand, reflexing to catch something falling, reaching a food item in the back of the refrigerator or high up, giving someone a hug with two arms wrapped around them, preparing a meal or baking, making a snow angel with big, full angel wings. One of the hardest things is being in a store and having someone ask me to reach something high up on a shelf because they see I'm tall. It's embarrassing to say, "Sorry, I can't. I have shoulder issues." The worst part is getting the questioning look of if I'm telling the truth. If I were physically able, I would definitely help.

People like me who have major limitations because of their shoulders look at everything they go to do with their arms completely different than your average person every single day. I now look at these types of obstacles like a game. What do I have to do to win? Take writing for example. I was in college when I had to write lefty. Before school started at the end of January in 2008, I knew I was going to be having surgery. So, I took one of my nieces "Learning to Write Books" and I would sit at the kitchen table and practice writing the alphabet. I felt silly doing this but in the end it worked. A kitchen chair is one of my best friends because I use it daily to get things off shelves that are high. When I shake someone's hand, I lean my body in so I don't have to extend my arm. I now have come up with creative ways non-traditional ways to accomplish many daily tasks. Lord knows, I've had enough practice over the years.

We all know not all challenges we face are easy. There are certain things that we do not have control over and we can't manipulate. This is why I like to take the ones I think I can manipulate and make it a game. You never know what kind of crazy, creative thing you might come up with to get a task done.

With my niece Emily on a boat ride at an amusement park. I

came off of the ride soaking wet because I couldn't defend

myself from the other people squirting me with the water cannons

because I couldn't reach out far enough to manipulate the water cannon.

It was still fun nonetheless. 



 

 

A fundraising page was created to help with medical expenses. If you would like to donate follow the link below. Thank you!!

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

Easier Said than Done 2013

"Try to make the most out of whatever life throws you." Good advice, right? I know I oftentimes repeat this piece of advice in my blog posts but that is because I firmly believe in it and it is my own daily reminder. Making the most out of whatever life throws you is not as easy as it sounds and it can be incredibly challenging. Being positive is all well and good but sometimes the reality of your situation is not a positive one. You have to acknowledge what your circumstances are because if you don't acknowledge it, then you aren't being true to yourself. Once you acknowledge things then the hard part starts: acceptance and moving forward.

I did not think 2 weeks after having the first bogus EMG test I would still be experiencing rather extreme symptoms. I do not know if my symptoms are from the high humidity in Illinois, lack of manual physical therapy or my nerves being hypersensitive causing my muscles to spasm. It is so hard to accept and wrap my head around the condition of my shoulders when they were completely different just a few short weeks ago. I can't even begin to describe what it is like to wake up every day and see your shoulder progress move backward instead of forward. The 2 months of hard work and progress in Colorado feels like it never happened. My main fear when I left Colorado was that my shoulder would fall apart. This fear seems and feels like it is becoming a reality.

One of the good things over the past couple of days is I finally think my shoulders have plateaued with how bad they want to get...for now. The hard part about waking up everyday now is moving my arms and seeing my pre EMG motion is yet to come back. I wake up with muscle spasms over both shoulders and shoulder blades which causes upper back and neck pain. The cherry on top is having my right shoulder subluxate. This is a huge bummer because that is the shoulder that had the graft put in, in November 2012 to stabilize my joint. To try to help my symptoms I have tried several things. I've used the heating pad, gone in the hot tub, tried gentle range of motion exercise in the hot tub, taken muscle relaxants to calm my crazy muscle spasms down, and have taken pain medication. My symptoms don't go away but they do become more tolerable.

Right shoulder now subluxates when I move my arm by

my side. If you look at the back of my shoulder, you 

can see the ball move back into the socket.

 It did not do this before my EMG on July 16th

so I don't know why it is doing it now.

I was told to work on what are called quadruped
exercises. It is when you are on your hands and
knees and you are supporting your body weight.
Sounds simple but it is very challenging for me.
Yesterday I woke up with my left scapula in a
freak-out. The faint line that starts at the top of my
scapula, extends down to the bottom of my scapula
and then goes in towards my spine shouldn't be there.
I'm praying that my muscle didn't detach. If it doesn't
get better, then further evaluation will be needed.

Amongst all the medical craziness, I've been trying to stay busy and do as much as I can continue to incorporate fun into my life. Some days I have felt absolutely awful have had to lay down throughout the day to take breaks because my muscles get so darn tight. It's not that I need to lay down for hours at a time. Laying down for even a half hour can make a difference and help me get through the rest of the day. I try to do what I can when my body is physically able.

Waiting for a Bon Jovi concert to start. I went with my mom

and it was definitely a great memory.  

Hanging out with my nephew. He is a funny little guy and can

always put a smile on my face.  

 Hanging out with my nephew. It's nice being able to hold him

while he is still tiny and not trying to squirm off my lap.  

It was a beautiful day at the racetrack with my nieces.

Once again, I know that  making the most out of whatever life gives you isn't easy. I recently was accepted into Northeastern Illinois University but my shoulders are giving me so many issues right now that by not knowing what comes next from a medical standpoint, it is very hard to commit to anything because I don't know what the future brings. It is very difficult to make any sort of personal plans and pursue what I want because I don't know how my body will react. My plan of action as of yesterday, is to return back to Colorado. I will fly out on August 27, 2013 with my mom, have another EMG test done on the 28th and meet with Dr. M on the 29th. I'll also meet with my physical therapist so he can hopefully calm these evil shoulders down. Wish me luck. I'm going to need it.

A fundraising page was created to help with medical expenses. If you would like to donate follow the link below. Thank you!!

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

Colorado PT 2013: Part 3

As the weeks of being in Colorado started coming to an end, I started becoming more concerned because I knew I would be heading back to Illinois soon. It sounds selfish, but the time I spent in Colorado was the best thing for me. For the first time in a number of years, I could strictly focus on my shoulders and trying to get better. I could go to physical therapy and chill out afterwards without feeling guilty. It was great. Neither one of my shoulders are in the shape that I was hoping they would be in. Of course I'm happy I have more strength but from a functionality standpoint, I didn't improve that much. If I said I wasn't disappointed, that would be a flat out lie. Having these complicated shoulder/shoulder blade issues is a lot harder than it comes across in a blog. Every single day brings about its own challenges and some days are a lot worse than others. I've been working at getting these shoulders better since 2007 and it is very tiring. Over the past several years I've been working hard trying to stay in the best shape I possibly can so it doesn't look like there is a problem with me. I've learned to move about effortlessly using strictly elbow motion and have learned to "hide" the pain I'm feeling from family/friends. As my mother says, I am a "Master Illusionist." Drawing continues to be the main outlet I use so all of the aggravation and stress I feel doesn't build up inside. While I was in Colorado, I redrew the tiger that I gave away to one of my surgeons as a thank you gift.

I usually do not draw the same picture twice but
my parents really liked this one, so I drew it again
in Colorado with colored pencil.

Tuesday July 2, 2013 was doctor day. It was my last week of being in Colorado before heading home. When Dr. M came in the room, he asked how things were going. I told him my strength has increased, I'm more aware of my shoulder positioning, but I haven't gained in my motion. I also told him that my left shoulder is getting progressively worse and is subluxating posteriorly. In addition to giving him a shoulder update, I told him I didn't regret having the invasive stabilization procedure that was done in Nov. 2012. In April, Dr. M asked if I regretted having the Nov. surgery and I told him I wasn't sure. Over the course of the 8 weeks in CO, I realized the Nov. surgery is doing exactly what it's supposed to do and thank God for that graft. Every single time my nerve gets flared up, my muscles tighten so bad in the front of my shoulder and you can see the humeral head being pulled forward. If it weren't for the graft, I am positive I would have subluxated or dislocated at this point. The graft in my shoulder has been working hard and doing its job; preventing my shoulder from dislocating. I told Dr. M I think there is a separate issue going on. He then asked if something occurred before my Nov 2012 surgery and I told him yes. On September 23, 2012 my shoulder dislocated and the shoulder reduction at the emergency room was the worst reduction I have ever experienced. The morning of September 23rd I had motion to almost shoulder level. Ever since my shoulder was reduced I've had minimal. Originally I thought it was due to the instability because that is what the previous patterns have been; however, the instability was corrected in November. I have done several months of physical therapy since then with gains in strength but no gains in motion. So I think something isn't adding up. Dr. M then came by me to examine both of my shoulders.

My evil right shoulder was up first. Dr. M gently grasped my forearm and shoulder. He then tried to bring my arm forward. In order to get a full assessment, Dr. M has to move my arm past my comfort zone. Since I am not one to cry or verbally say, "Ouch" I went up on my tippy toes and tried to walk away because my shoulder was killing. Dr. M was still holding onto my arm so I never actually got away from him. He then examined my external rotation. As he moved my arm, the entire room could hear the very audible crunching/grinding that was occurring in my shoulder. You can only imagine how loud the crunching/grinding is for me when that noise is occurring directly below my right ear. That sound makes me absolutely crazy. It is nauseating and irritating. That noise is one of the things that bothers me the most because it is another daily reminder that my shoulder is trashed.

Next up was my left shoulder. Dr. M grasped my forearm and shoulder the same way he had on my right. He tried to bring my arm forward. As he was moving my arm up, I could feel a lot of pressure building up in the back of my shoulder joint. Before I had the chance to say, "My shoulder is going to subluxate" my shoulder had already done so. When Dr. M moved my arm the opposite direction, the ball clunked back into its proper position. Dr. M then tried putting more manual pressure on the back of my shoulder to stabilize it, but as he moved me forward the same exact thing happened again. Never a good thing. Dr. M sent me for X-rays of both shoulders.

After I had my X-rays done I went back to the room and started pacing back and forth. When I am in severe pain, this is just something that I do. I can't sit still. I'm not one to scream and yell so I stick to pacing. My right shoulder was not sitting properly at all. I felt like my right side was hunchback. My shoulder was being pulled way forward and everything was screaming. It took everything within me to stay composed. My elbow was bent at an odd angle; I was not able to straighten it at all. Every muscle in my right upper quadrant was in spasm. It killed. My therapist came into the room. He looked at me and knew something was wrong right away; he has never seen me react to pain in this way. He talked me into laying down on my back propped up with a pillow so my muscles would hopefully relax. Shortly thereafter, Dr. M came back into the room. Dr. M tried moving my shoulder and told me to try to relax. I looked him in the eyes and said, "I am relaxing. I have no control over this. This is what happens at therapy when we work the nerve." Dr. M put my arm back down and sat down next to my mom. I sat up and waited to hear what I'm supposed to do next. Dr. M told me my right shoulder is sitting up higher than it should. He suggested that I have an EMG (type of nerve test where they stick you with needles and send a little shock to check your nerves) done on both shoulders and to include the brachial plexus branches. Until then, I should continue my physical therapy workouts at home. This is one of the main reasons why I did not want to come back home to Illinois. There are still problems with my shoulders to figure out. When the doctor appointment ended, I went down to the physical therapy clinic and my therapist worked on trying to get my right shoulder to relax.

July 16, 2013: One week after I got home from Colorado I had the EMG test done. I went back to the same individual that did my EMG in 2010 because he was thorough and nice. When I went back the second time around, it was like seeing a completely different individual. As soon as I said the order was from Dr. M in Colorado it was like the doctor didn't even want to be involved. There was no history taken, he did not ask my symptoms, he did not examine my motion. I filled out zero paperwork. He did the most basic EMG test possible. I was told, "Everything is completely normal and this is strictly a mechanical orthopedic issue." Since the test was not thorough, I am opting to go for a second opinion and have the test redone by a different physician because I don't trust the first doctor's impression. It would be a lot easier if doctor's would tell me they do not want to be involved in my case rather than make me go through an uncomfortable test and deal with the way my shoulders will react to it.

Ever since one of the needles used to have the EMG done

was stuck in my rhomboid muscle, I have had scapular winging.

My motion has decreased in my left shoulder, I wing out more

than normal and I have had more posterior (back) joint pain.

My motion has even declined in my right shoulder. I didn't

think it was that possible considering I didn't have that much

to begin with. I was obviously proven wrong. 

It's ridiculous and nerve-wracking to have to go for an EMG a second time; especially knowing how my shoulders reacted to the most basic EMG possible. It is going to be a handful. I would so much rather prefer doctors to be honest with me rather than give me a bogus exam where I have to go have it done again. During the first EMG the physician didn't do the "shock" aspect of the test so I'm sure my shoulders are not going to like that at all. The past week has been very difficult because my motion has decreased even more, my pain level has increased, my right side is crunching and shifting when I move, I've needed to wear the sling on and off to help my right shoulder but it aggravates my left shoulder. All I can do at this point is take it easy, wear the sling as needed to calm down my right side, cross my fingers that things go back to "normal," and take things one day at a time. Hopefully the second doctor who does my EMG will be much better than the first one.

At the lake with our family dog Daisy waiting for the annual

parade to start that is held every year in our community. Timing is

everything; Daisy was in the middle of licking her nose when

 the picture was snapped. Her tongue doesn't usually

 stick out like that.

 

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Colorado PT 2013: Part 2 Thank God for Hockey!!

Thank God for hockey! Hockey gave me something to look forward to a few times a week and it completely got my mind off of all the medical stuff for a few hours. The hockey playoff season started right before my mom and I started the drive to Colorado in May, and ended June 24th; the day before my birthday. While in Colorado, my mom ordered Lou Malnati's deep dish pizza and had it shipped to us. During the playoffs, we would bake one of the pizzas and root on our Chicago Blackhawks. Anyone that knows me knows I love hockey and I love the Chicago Blackhawks. At physical therapy it didn't take them long to discover this about me. Before leaving for Colorado I painted a Blackhawk on a tank-top so I could wear it to pt proudly. This year was the most fun I have ever had watching the playoffs. There was healthy, friendly banter amongst myself and some of the other therapists which made the atmosphere at therapy fun. Early on I learned my one physical therapist is a Boston Bruins fan. Because of this, I had my fingers crossed the Bruins and the Blackhawks would face each other in the finals. Fortunately both teams made it to the finals. Let the friendly trash-talk begin! It was so much fun. On June 24th the Blackhawks beat the Bruins and took home the Stanley Cup. When I walked to therapy the next day, I walked in with my #10 Patrick Sharp jersey on and had my therapist take a picture with me. It would have been SO hard walking into therapy if the Bruins won the cup. I can only imagine all the crap I would have heard :)

As therapy continued over the course of the next few weeks, we incorporated exercises that concentrated on trying to retrain my shoulder blades to move in the proper direction. They are difficult because I can't feel my shoulder blades moving where they are supposed to. It was/is very aggravating at times because I mentally understand exactly what my therapists are asking me to do with my shoulder blades but I can't physically execute it. It is also aggravating because what I have to do to help my shoulder blades does not feel well in the back of my left shoulder joint. It's back to that saying, "Stuck between a rock and a hard place". When I arrived to pt in May the back of my left shoulder was giving me trouble but as the weeks have gone by the posterior instability has become more apparent. As long as I keep my left arm relatively close to my body there isn't an issue but as soon as I move away from my body things start to shift.

Short little clip showing left posterior instability

Even though pt had its serious moments, the funny moments far outweighed them. It was good to see the CO therapists I worked with all had a sense of humor like my IL therapist. If I have to go to pt anyways, it may as well be fun. In the past I've been to therapists who make zero conversation and it's strictly "Go do 10 of this exercise and then go do 15 of that exercise." Those types of therapists make the appointments seem forever. Having humor is a good distraction tool while you're doing the exercises; especially when they hurt.

Top 10 fun moments in pt:
1.) Being taught how to say certain words with a Boston accent
2.) Getting one of my therapists on my side to root for the Chicago Blackhawks
3.) Having my Bruins fan therapist take a picture with me in my Blackhawks jersey on my birthday
4.) Laying on my stomach and having my therapist take a picture of my shoulder blades with an "easy button" on my back. Another words, if you have complicated shoulder blades just get yourself an easy button.
5.) There is one exercise where I am on my hands and knees. I have each hand on a towel and I have to slide each arm forward one at a time. We were joking around how I could clean the table doing this exercise. My therapist went to the back and had one of the aids grab some Windex Antibacterial spray. While my therapist was taking a video of me doing the exercise, he had the aid spray some Windex on the table in front of my hands and I cleaned the table while doing the exercise.
6.) Having my therapist wear his "Watch out for the crunchies" t-shirt during my pt session and taking my picture with him.
7.) There is another exercise where I am on my hands and knees. My therapist taps my sides trying to throw me off-balance and I have to hold myself up. It is now referred to as "Cow Tipping"
8.) Being asked by one of my therapists where I am from. I said, Illinois. She then asked if I have always lived there. I replied, yes. She then said, "Really? I thought you were from somewhere south because I hear a southern accent when you talk." I laughed and then explained from all the years of traveling back and forth to Kentucky I picked up the accent.
9.) As little motion that I have when I am standing, it is the exact opposite when I am bending over. My arms go to shoulder level when I am bent over. So, we came up with the idea that I should set my house up like in Mission Impossible so I could hang from the ceiling and cook dinner and be able to do more activities. You have to admit, it would be amazing if I were actually able to make this happen.
10.) Getting to know the therapists who have been working so hard trying to help me.

Me with my Bruins fan physical therapist

 Me with the therapist who started to root for the Blackhawks for me; such a smart guy :)





Me with my only female therapist I worked with; she gave me a break from the boys :)

On the last day of pt my therapists said the next time they see

me they want me to be able to get my arms up high enough to

give them "bunny ears". I told them we can do that now as long

as they squat down in front of me.

Even though I didn't make huge gains in my motion at physical therapy I don't regret spending the time I did there for an instant. There were a lot of discoveries that were made with my shoulders which gave us a starting point. This is huge; everyone has to start somewhere. My strength has increased even though I still have a long ways to go. I am more aware of my posture and making sure my shoulders are in the correct position before I move. I am able to do some of my exercises on my own without manual assistance. Some people may feel really mad/aggravated towards their therapists because they just put all this time and effort into working on improving their motion and didn't gain as much as they had hoped. I am not mad/aggravated at any one of them in the least. They have all put so much time and effort into my care and I realize I am a very complicated case. There is a major difference between being mad/aggravated at those trying to help you and being mad/aggravated at the situation. I am mad/aggravated at my situation.

 It doesn't look like much but my external rotation on my

right shoulder (left side of pic) did increase.

Ohhh flexion you are a whole different issue. We are still working on that. 

Abduction increased on my right shoulder (left side of pic) and

has decreased on my left shoulder (right side of pic). So we

are still working on this.

I have to break this post into a Colorado PT 2013: Part 3. Our time in Colorado was coming to an end. Before I could leave, I had an evaluation appointment with Dr. M. At this appointment, the evil beast that lives in my shoulder raised its ugly head to show my doctor. Thank God... 



Colorado PT 2013: Part 1

Oh my gosh, two months in Colorado was one of the most difficult but one of the most awesome times of my life! The car ride with my mom was certainly a memorable one. My mom has dubbed it the "Girls Go Wild, Wild West Trip". We had music blasting and talked about so many random things. On our drive we spotted the "World's Largest Truck Stop", a random dinosaur statue on the side of a road in Nebraska, we discovered the rest stops in Iowa only have bathroom stalls about 5 feet tall (not a good discovery when you're 6'). After this discovery, I couldn't go into the bathroom without feeling like a perv, so I avoided them haha. The drive itself wasn't as bad as we had heard. Spring was in bloom and the shades of green were beautiful. It was a very exciting moment when we spotted the Rocky Mountains in the distance. This meant we were getting closer to our destination. My mom and I both feel like we had someone watching over us on our drive because once we got to our condo in Colorado, for the next several weeks, the Midwest got tons of rain and a lot of bad storms right where we were driving. We are both very thankful we passed all of the bad weather and got to Colorado safely.

Couldn't resist not taking a picture with the height of the bathroom stall.
There was nobody in the bathroom when we took this picture.

View of the mountains when we got to Denver, Colorado

The time in Colorado was the best and the worst gift I have been given. It has been dubbed the two months of observations and discovery. I am so thankful for the time I got to spend there. It is so hard to believe that my two months there has come to an end. It was the best gift because I know there are a team of medical professionals who can help me. It's the worst gift because now that I am back home in Illinois, I'm trying to figure out a way to get back out to Colorado for good. In the mountains where my mom and I were at, there is no humidity. I felt so much better there.  It is so hard being back in crazy humid IL when you know just a few states over that could be avoided and you know your medical team is there. I think going to CO is one of the best decisions I have made from a medical standpoint. The staff is great at the hospital/clinic and they all stay in contact with one another very well from a communication standpoint. Besides my mom, my therapists were the only people I really interacted with for 8 weeks, 5 days a week, 2 times a day. The relationships that I made with them far exceeded anything I ever expected; it feels like I have known them for a very long time.

Going into physical therapy (pt), I knew my shoulder situation was quite complicated, but as the weeks went on, I learned they are much more complicated than I even realized. The first few weeks of pt involved my therapists making close observations assessing my shoulders and kind of learning what my shoulders/scapulas do when I try to move. Quite frankly, it was a lot of trial and error on many levels (exercises, body positioning, motions etc.) to see what worked well and what didn't. When certain exercises didn't work, my therapists would think of different ways to modify them to my bodies needs. Part of my issue is my lack of strength around my shoulders and shoulder blades. Since my muscles are rather weak, especially on my right shoulder, the ball of the shoulder doesn't sit in a good position. This lack of good positioning caused a great deal of crunching/grinding, shifting sensation and pain. To help with the positioning, my therapists would physically hold my shoulder in the correct position while I worked out. Over the next few weeks, I learned where that good position was and was able to workout without them holding my shoulder in place.

 



So every time my right shoulder would crunch a lot, my

one therapist would always say, "Watch out for the crunchies"

I told him I should get a shirt and paint Captain Crunch

on it with the quote. I guess you could say it

became our "team motto".

About 3 weeks in pt a couple discoveries started to come to the surface. The first one was when I was laying on my back and my therapist was stretching my neck. When he stretched my neck towards my left shoulder, the front of my right shoulder started to spasm and the "ball" of the my shoulder started to be pulled forward. We taped it back into its proper position and I wore a sling the rest of the day so it could calm down. We now know this occurrence was the very first sign that something else was not quite right. On Saturday, which was a couple days later, while working with my other physical therapist, we were working on what is called nerve gliding. I've been told to think of it like flossing your teeth. The therapist works the nerve to try to get it to glide smoothly as the arm is moved. Later that day I started having pain up the side of my right neck, and the front of my right shoulder was in spasm. When I woke up Monday morning, the pain was worse up my neck and into my jaw. Eating breakfast was challenging because it was difficult to open my mouth. My neck motion was very limited and my shoulder was still in spasm pulling it forward. For the next two days at therapy, my therapists did soft tissue work and worked on trying to get everything to relax. Luckily by Wednesday, my shoulder was back to "normal". We learned what to avoid when doing nerve gliding.

Discovery number 2 was when my therapist noticed my shoulder blades move the wrong direction. When I move my arms in front of me, the bottom of my shoulder blades move in towards my spine instead of moving out to the side. Now, how the heck did that happen without me being aware or being able to feel this? Wouldn't you think it would feel weird? It didn't and it doesn't. This is my bodies "new normal" movement pattern. I have no clue how long my shoulder blades have been moving this way. You have to keep in mind I have had numerous muscle reattachment surgeries on my on my shoulder blades and certain muscles were moved to areas where they aren't necessarily supposed to be. This motion discovery meant we had a starting point of where we could begin to try to correct things. In my opinion, you "normal" people move really, really weird haha. When my therapists physically move my shoulder blades in the correct position when I move, it feels so wrong to me. It is unnatural, awkward, weird and the sensation is very similar to when my shoulder blades would wing like a chicken. It has and still continues to be a challenging obstacle we are working on correcting.

Short video showing the motion of my right scapula when I move

Between physical therapy sessions, my mom and I kept on living our philosophy: incorporate fun. We would go for walks on the trails along the streams, eat lunch outside amongst all of the trees, go for drives taking in the scenery, and sit by the pool talking to people. If we didn't do any of these things I know we both would have started to lose our minds. Colorado is too pretty to just sit inside and waste away the day. Even when I didn't feel well after some therapy sessions, we could walk a short little distance and relax on a bench listening to our natural surroundings. Everyday was like an adventure. We never really knew what we were going to do or what we would see. It kept things exciting and fun.

My mom and I eating lunch outside rooftop with the mountains in the background

I have to break this Colorado PT 2013 into a couple parts because there is too much information to cram all into one post. Over the course of the next several weeks, my strength increased. Yay! Since my strength increased, we were able to slowly start progressing onto exercises that involved trying to increase my motion. This increase in motion brought more issues to the surface...