The Gut Feeling is Back 2014

Isn't it interesting how some weeks of our lives you wish you could relieve over and over again, while there are others you just can't wait to end. For me, this past week started off really good but as the days went by things started going south. Sunday, Monday and Tuesday were a lot of fun. My nieces and I had a sleepover in my room where we shared stories and laughed. Since they were home from school due to the weather, my mom and I were able to do some fun stuff with them. We took them to see the movie Frozen and they helped out making homemade pizzas, tortilla soup, and cookies. Both my nieces are at the age where you can supervise and let them cook. They both learned there is a lot more that goes into cooking. It's not like we press a magic button and food magically appears on the table all prepared. We played games with them and it was just a nice, calm couple of days to spend time with them.

Then the middle of Monday night hit. It was a normal tossing and turning nights sleep. But for some reason I moved my right shoulder off my side and realized it moved higher than normal. I moved it again and the same thing happened. That's when I paid closer attention to how I was laying and realized I had just possibly made an important observation. I've been saying for several months my neck is hurting me. Everyone keeps telling me it is because of the muscle spasms that I get due to the muscles in my neck overcompensating for the ones in my shoulder. I know the muscle spasms are a contributing factor but I really don't think it is the underlying cause of the neck pain. I don't know how to explain it other than it's this gut feeling that I've had so many times over the past 8 years that I've learned to listen to.

As I watched the hours go by on the clock all I kept thinking was, "Come on! Be morning already. I have to show my parents my arm motion with my neck bent forward". I'm one of those people who can't turn their mind off when they think they've discovered something. I keep a notebook and pen on my nightstand and write down notes as I think of things throughout the night. It sounds kind of weird but a lot of times I have dreams of being at the doctors office and in my dream I'll ask a question that I should find the answer to. My brain is on the go 24/7 so I write things down so I don't forget. So come morning, I showed my motion.

In the pictures below you can see the difference between my motion with my head neutral and head bent. All motion increases (except flexion; not pictured) September 21, 2012 was the last time I was able to move my right shoulder that much without insanely sharp/stabbing pain over the front of my shoulder. It might not look like a lot of motion, but in my world it's a ton.

EXTERNAL ROTATION

EXTENSION

STANDING ABDUCTION

 

SIDE-LYING ABDUCTION

As you can see there is quite a difference in motion. Now the question is WHY? Honestly, I don't know. I've had no imaging of my neck so I don't know if there is any issue there. I'm seeing my physical therapist tomorrow to have him evaluate things. I already sent these pictures to my doctors and I'm waiting for a response. 

Then comes Wednesday January 29, 2014. Things were about to change; for the worse.  I was sitting on my bed coincidentally emailing my surgeons my questions about my motion and telling them I was considering postponing things on my left shoulder at this time and just focusing on the right. I was wearing a soft collar neck brace just to hold my head in a better position as I typed. My neck started getting stiff so I took the neck brace off. Then just like that for no apparent reason, I turned my head to the left, felting something odd at the base of my neck, followed by VERY sharp/stinging-like pain over the top inside portion of my left shoulder blade. I put the neck brace back on because I couldn't turn my head at all without this sharp pain. I couldn't bend over, bend to the side, sit comfortably or anything. The most comfortable position was laying on the floor, on my back and not moving. Originally I thought I pinched a nerve but as the day went on, the sharp/stinging pain I had began to subside. Instead of noticing the sharp pain, I realized there was a problem with my shoulder blade. It was sitting higher than usual and there was this depression/divot over the top portion of my incision. My gut feeling is my muscle ripped. I've had that sharp/stinging pain sensation before. The last time I had it was when I slipped down the stairs and retore my muscles off my shoulder blade.

My left shoulder blade (right side of picture due to the reflection in the mirror)
has a very apparent line at the top. This depression/divot has been there since Wednesday.
It is VERY tender to have pressure put on it. 

Left scapula is winging a lot more than normal. Before just the bottom used
to wing out. If you look at the top though, my scapula is winging up top too.
That's where I felt the sharp/stinging pain and where I think the tear happened. 

Thursday January 30, 2014 was rather uneventful. I had to take my muscle relaxants to try to get my muscles to calm down so my left shoulder blade would sink back into position. I called Dr. K's office but his clinics ended at 10am and I called at 11:15. Go figure, right! 

Friday January 31, 2014 rolls around and it was a long day from the get go. As soon as I opened my eyes I knew there was something going on with my right shoulder. I had a burning sensation up the right side of my neck and I was hurting more than usual. When I stood up I noticed my shoulder was subluxated out the front and I couldn't move my arm. It was locked. By 1:30 in the afternoon that day, I had subluxated 3 times simply by doing nothing; unless you consider waking up, flipping a pancake, or grabbing a cup as a reason to subluxate. After the third time, that was my cue to just sit all day with the heating pad on and not move my arm the rest of the day.  

Not a pleasant way to wake up. You can see my shoulder is sitting much higher
than it should. It's hard to describe the sensation that occurs when there is
all that pressure on a graft in the front of your shoulder doing its job by
preventing you from dislocating. 

My arm gets locked at this angle until my shoulder goes back into position.
It's definitely not the most attractive thing in the world.

At the end of a long week sometimes all you can do is be thankful that it's over and be hopeful that the following week will be better. I'm hopeful that this week I will get some questions answered and if anything be given some sort of guidance in which direction to move. Whether that be going for testing, meeting with a doctor, or staying on the same course of treatment. I still haven't gone for the botox injections. I'm still rather reluctant since nobody can give me a clear concise answer with what to expect. It's a hard scary decision to make when you know you already have an underlying connective tissue disorder. At the end of the day, I have to listen to this little voice inside my head that hasn't steered me wrong yet over all these years. It's important I listen to it because after all it's my body and I'm the one who is going to have deal with whatever happens to it at the end of the day.

Even though my shoulders are killing,
sometimes all you can do is smile, put on a brave face,
and believe you will get through this.

http://www.pinterest.com/pin/438467713693119213/ 

How Do You Deal With Pain?

Over the past couple weeks, I've been contacted by some very nice people who have read my blog posts. One of the questions that keeps coming up is, "How do you deal with your pain?" My initial answer is always just take it one day at a time. This is true because I can feel different every day; however, the more I think about this answer, the more I realize it isn't really that helpful. I've been pondering this question a lot over the past few days. Below are a few things I do to deal with the pain.

I am in no denial that my situation kind of sucks and can hurt like hell on certain days; however, watching someone you love go through chemo and radiation treatments for their cancer, makes you view things with a different perspective. I guess you can say my compass is set differently. There is never a day where I don't hurt. My pain can change in severity and vary in location every day; however, it is not going to kill me. It is helpful for me to think of dealing with pain almost like a competition. The competitive mindset I had when I played soccer is still with me. Instead of being geared towards the game, it is geared towards all the various medical issues. In my head I think, who is going to win? Am I going to take control over the pain or am I going to let the pain control me. Some days I win and some days the pain wins. Depending on what level of pain, determines what activities I will participate in that day. It's really important to listen to your body and not cause further injury. At the same time, it's important to learn how to go about your day even if you hurt. With me, it's important to do some amount of exercise every day to keep my other joints strong.

If you want to maintain any amount of independence, it's important you learn how to modify various things. I've been doing this since the day I became injured in 2005. I am very stubborn about giving up any of my independence. My mind definitely has to think outside of the box in order to get tasks done. If that fails, then I will ask for help. I've been modifying tasks for so long that I don't think of it being any different than a "normal" person. I had to sit and really think about what activities I modify. Honestly it's everything. To name a few, I use my legs and my feet a TON. If I'm sitting on the couch and the person next to me says, "Hey, set this over there" they will put it between my feet and I will set it down that way. If I want to make a smoothie, I will climb up on a chair because I can't reach the top of the appliance. I get dressed/shower dangling over at the waist because my arms can't reach my head. I use straws in water bottles to get the last bit at the bottom because I don't have enough arm motion to raise the bottle to the correct angle. When people shake hands with me I don't extend my arm out. I will bend forward at the waist. The only time these modifications become more apparent to me is in a social setting outside of my home. This is when I really notice that I do things different. My family and I don't give it another thought. It's our normal.

My mom offered to help me make my smoothie but
sometimes it's harder to ask for help instead of doing it myself.

Modifying at its best. My nephew Justin is too heavy
for me to hold with my arms. In order to hold him, I sit on
the floor and bend my knee to support him. There is zero
stress/strain on my arms. 

Find a hobby/interest to use as an outlet. This is my saving grace every day. It is important to find something to distract yourself with so you don't think about how much you are hurting. Drawing and writing are my personal primary outlets. I can put music on while I draw or write and concentrate strictly on the task at hand. For some people they might gravitate towards reading, sewing, painting, watching a movie etc. Over the past week I've been experimenting trying to find the most comfortable position to draw. I've found I can't draw at a kitchen table, on the floor, on a bean bag, on the couch etc. I did find if I sit in our new recliner I can prop well enough to draw for short intervals at a time. If you are a chronic pain sufferer, I think finding a hobby is extremely important to help get you through each day.

I'm happy to have found a decent comfortable
position to draw even if it is for short intervals
at a time. It's better than nothing. 

Communicate with people. It can be done in various ways. There's one-on-one communication, email, phone conversation, text messaging, letter writing, blogging etc. With pain, one of the things I really think you want to avoid is isolation. I think it makes things worse because you're not thinking about anything else. I guess having 7 people in the house from ages 8-91 is a plus haha. It's never quiet and there is always someone to talk to. With chronic conditions, it is normal for relationships to change. Some people are accepting of this and some are not. Even though it can be a hard confusing time, it's bound to happen. This is one reason why it's important to be willing to make new friends. You can never have too many.

Get a pet! Pets are great companions. I'm personally a dog lover. Growing up, we always had a dog. I can't imagine life without one. They accept you no matter what physical ailment you have. They are happy to play one minute and lay by you the next to keep you company.

Daisy is happy to play

Daisy is also happy just keeping me company

LAUGHTER!! Find something to make you laugh. Don't be afraid to make yourself look silly and don't take life too seriously. Sometimes it feels good just to let go.

My niece Lizzy got this outfit as a gift. I told her I bet
I could fit in it. Surprisingly, I fit into her clothes.

Here's Lizzy in her outfit. She had my sister sew
the pants smaller so I wouldn't fit into them haha. 

People with Joint Hypermobility Syndrome aka
Ehler-Danlos Syndrome-Hypermobility Type lack the
protein collagen in their body. In my Christmas basket
 was this hair product. It says it has instant collagen infusion.
Now I joke I should have been looking in the hair care
aisle for medical treatment all these years.

One of the most important things I have discovered is to do something to help another person. Sometimes people with chronic medical conditions can get caught up in the drama of it all. It's important to take a step back and look at what you could be doing to help another individual. Be it a listening ear, writing a blog post, donating art, having a friendly conversation, or supervising a child so they don't burn the house down while they try to cook a pancake. The point is, you don't have to go out of your way to help another person. It can be as simple as just listening to somebody and letting them know you are there for them.

Everything I have written on this post I do all the time. You have to live life with a purpose. I never said it was easy but I refuse to give in. Every day, I have to chill out at some point in the day. It's just the way it is. If your body isn't working well one day, do something that only requires your mind. I hope some of you have found this post helpful. It doesn't cover everything I do to deal with pain but I think I've covered the most important ones that I do.

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

Murphy's Law Comes on Our Road Trip 2011

Happy Holidays to everyone and I wish you all a happy healthy 2014!

It's about time that I got back on track. I had to go back and read the blog post "2011 is Going to be Quite a Year" just to see where I even left off. I didn't realize it has been nearly 6 months since I wrote it. I guess time flies when you're having fun. So, to catch you up to speed, I was diagnosed with Quadrilateral Space Syndrome by a doctor in California in January 2011. Nerve decompression surgery would be done later in the year to get that addressed. In March of 2011 I had right scapular muscle reattachment surgery and a shoulder stabilization procedure by Dr. B in Lexington, KY.  The surgery needed to be done again because I needed to have a newer procedure done where muscles are transferred to stabilize my shoulder blade. The shoulder joint needed to be tightened because I was subluxating out the front. Here's what happened next...

After the surgery, recovery was going relatively smooth for about 2.5 weeks. Then one night my dad got a phone call that my sister had slipped backwards rollerskating and broke both of her wrists. A long story short, this led to subsequent surgeries the rest of the year and her out of commission for a while since both wrists were effected. Between my sister and I, there were 10 surgeries that year. She had 5 and I had 5. When my sister got hurt, recovery became harder for me because I had school and had to help take care of my 2 nieces who were in preschool and 2nd grade at that time. My mom and dad had to work. A typical day for me was to get up and get my nieces ready for school. After that my dad would drive me to school and pick me up. After I got picked up from school, I would do my homework, try to relax for a bit , and then watch my nieces when they came home. It was a hard time few months for everybody.

By the time May rolled around my mom and I were getting ready to go back to Kentucky for a post-op appointment with Dr. B and to figure out what was going on with the back of my right shoulder joint. We decided to bring my nieces with us. It was a girls road trip. Looking back at it now, I don't know how we survived that road trip. It was as though we had packed Murphy's Law with us (anything that can go wrong, will).

When we arrived in Lexington on May 25, 2011 we all had a very nice evening. We went out to dinner and after that, my mom and I took my nieces to the swimming pool. By the time we got back to our hotel room, we were all very tired. My nieces and I were dozing in the room watching TV when my mom went to the parking lot to get the last piece of luggage from out of the car. I remember being in the hotel room and hearing a big boom. It sounded like someone pushed one of the cleaning service carts into the wall. I didn't think it was anything...wrong. In reality it was actually my mom who caught her shoe on the lip of the elevator floor and falling into the wall and onto the floor. My mom is a very stubborn woman and didn't want to alarm anyone because she was the only driver.

I remember getting aggravated at her that night because she wouldn't turn the light off in the room and kept running in and out of the room all night. The next morning when I woke up I looked at my mom and everything made sense. The first thing I said was, "What's wrong? What did you do?!?" With a sheepish grin on her face she said she fell into the elevator and proceeded to show me her arm, shoulder, and clavicle. Not good. So, we went to the doctor's office to see Dr. B since I had an appointment. My mom saw him too. I told Dr. B my right scapula was doing well but I was having a lot of pressure building up in the back of the right shoulder joint. We thought it might be scar tissue building up but I wasn't completely convinced. As far as my mom goes, she had a lot of bruising and swelling and was told she needed to follow up with Dr. K in Illinois.

Fun in the swimming pool after dinner

May 27, 2011 was going to be a fun day because we had two little girls with us who wanted to see the Kentucky horses at the horse park. We woke up and went downstairs to have breakfast in the hotel. As I reached for my glass of milk, the pressure that I had in the back of my shoulder joint gave way and went POP! Oh boy, that wasn't good. So there we were. My mom and I were beat up. We finished getting ready, put on a happy face, and went to the Kentucky Horse Park for the day. It wasn't crowded at all so we were able to get up close to the horses and take our sweet time. Minus the injuries, it was a great day.

A horse's head looks very big when you are little

My mom and nieces feeding the horse

My nieces and I

On May 28, 2011 my mom and I wanted to show my nieces Natural Bridge State Park and let them ride the ski lift up to the top of the hill. We took them on a walking trail and they got to see things they had never seen before. It was fun to watch them experience something new. When we were done at the park, my mom and I thought it would be a good idea to get sub sandwiches and picnic in the forest. This turned into a train wreck. Somewhere along the way in this very large national forest we made a wrong turn and I guess you could say we kind of got lost. After a couple hours we found two bikers on motorcycles who led us to the correct road. Three hours later we left the forest. It wasn't funny at the time, but writing about it is pathetically amusing now.

The view of Kentucky from the top of the natural bridge

As we headed home the next day we knew it was going to be a rough ride. My mom was killing and there was nothing I could do to help since I  can't drive. All we could hope for was good weather; however we seemed to have packed Murphy's Law with us so that wasn't going to be the case. The ride started off fine until we hit the state of Indiana. Then there was heavy downpours of rain and very scary looking clouds. As my mom drove packed in ice, I was on tornado watch. Fortunately, there were no tornadoes and we made it home safe. Our driveway never looked so welcoming before.

The storm clouds we drove through in Indiana

More storm clouds

All in all we had a good time if you take out my mom falling in the elevator on day 1, my anchor popping on day 3, getting lost in the forest on day 4, and driving home through what looked to be the tornado gates of hell on day 5. The important thing is, we still made the best out of the circumstances we had and my nieces had a great mini-vacation. We are all able to look back on this trip and laugh about it.

Now that we were back in Illinois, let the doctor appointments begin again...

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