Wednesday, February 27, 2013

A Wedding Celebration

One of the good things about life is it does go on and there are lots of things in life to celebrate. Just because you may be under hard circumstances does not mean you are stuck there forever. You have to stay positive and hopeful that you will get through it. Family and friends are there to help you, but you can't expect them to stop living their life to revolve around yours. You need to dig deep and learn to deal with things on your own. Every single person that is dealing with hard circumstances has the option to decide how they will deal with their issue even though it can and usually is extremely hard. I think it helps to accept the circumstances that you have and know what your limitations are. In my case, I deal with hard situations by staying busy; go to school, draw, go for a walk or go on an exercise bike, plan stuff even if it something small like going to a movie on a certain day, be involved in your family's life or just have fun. I know for a fact the rest of my family and myself would not have gotten through the past 7 years if we didn't incorporate fun. Laughter is a great thing. On long car rides to doctor appointments, we get creative to keep ourselves entertained. To this day, I think staying busy and active makes the hard days a lot easier to deal with. Even with the crazy limited motion I have now, I still find things to make me stay productive within what my body is capable of doing.

After I had the second scapular surgery during my first semester of college in 2008, I was embarrassed to go back to school in a sense. I had already missed 4 weeks out 16 weeks. I was starting off at a new school so nobody knew me or knew what my history was. I had just gotten out of the shoulder brace on my right side and I walked into class a few weeks later with a big, bulky shoulder brace on my left side. There were a lot of stares and questioning looks on faces, but nobody ever asked, "What happened?" I would prefer people ask me questions rather than stare at me or give me strange looks. It's not like I'm going to bite. Every day for the next month, there were stares and it would drive me nuts. Regardless, I couldn't let those stares get in my way of getting my stuff done. I had a lot of work ahead of me to make sure I had all of my assignments turned in on time, and making sure I was ready to take all of my finals. I knew if I could just dig deep and get through the next 4 weeks, I could relax afterwards and it would all be worth it. That semester ended in the middle of May; I ended up with 3 A's and 1 B. I was so happy and relieved to have gotten good grades considering I had 2 surgeries, felt awful, and missed quite a bit of class. It was now time to get ready to fly to Las Vegas at the end of May because my brother Brian was getting married!!!

May 2008

I was a bridesmaid for my brother's wedding and was really looking forward to getting away for something non-medical! However, I still had a lot of concerns. I was still wearing the shoulder brace on my left side and didn't want to wear my shoulder brace for the wedding ceremony and pictures. There was a little fear in the back of my mind that somebody would grab that arm not thinking and something would happen. I was also concerned being that far away from home in the event that something was to happen to my right side. It was shifting out of the joint again and I had something popping out of place about even with your axillary (armpit) crease. My parents were putting my right shoulder back in place because it was happening quite frequently and ER doctors didn't want to touch me because I had surgery on it. One of my biggest concerns though was a mental one. The bridesmaid dresses chosen for the wedding were strapless and cut in back below the shoulder blades. I was nervous about walking down the aisle because everyone was going to see the incisions over my shoulder blades from the scapular surgeries. If my sister-in-law reads this blog, she is going to be surprised because I never said a word to her about this. I didn't want my concerns to interfere with her special day. Therefore, I wore the dress (which is beautiful) , walked down the aisle, and got over my fear of people seeing my scars. I call them my battle wounds; I have earned every one.

Me, Sister-in-law Lynn, Mom Karen

My brother Brian & Me

On May 27, 2008 I got a new sister-in-law; her name is Lynn. My brother Brian and Lynn had their wedding and reception held at Mandalay Bay in Las Vegas! There were about 65 people that flew out to celebrate. Two of the most special people that went to the wedding were my Grandpa King and Grandpa John (who still lives with us). They were both 85 years old at this time; it was very special to have them both there to join us in the celebration. After a wonderful evening of dining and dancing (I stood on the side and watched everyone dance), the night was topped off with an Elvis impersonator that they hired. What a riot; that dude definitely had a lot of plastic surgery but he did look like Elvis.

My dad Joe, Brian, Lynn, Karen

Me & My sister Kelly

My Grandpa John & Brian

Me & my Grandpa King. He passed away in 2011. I still miss him a ton.

Now what kind of blog would this be without something crazy happening? Did you really think I would write one that didn't involve some sort of medical issue?? Haha funny; there is no escape. So here it goes. The day after the wedding we had some fun in the sun and went to Freemont Street in the evening. As I mentioned earlier, my right shoulder had been subluxating frequently and my parents were putting it back in place. While we were at Freemont Street, my right shoulder shifted out of place and also (what I now know to be) my biceps tendon was subluxating out of the bicipital groove (basically a track that the tendon sits in).

It wasn't funny at the time, but now we laugh at how the night played out. My mom and I tried to find somewhere private on Freemont Street (no such thing) so she could try to get everything back into place without an audience. We found a little courtyard connected to Freemont so we decided that was a good spot; even though we were standing just a couple feet in the courtyard it was still rather dark and creepy but we didn't go roaming or anything. While my mom is pushing/pulling/twisting my arm there was this creepy guy that stood there and watched us. We must have made quite a sight between me crying and my mom pulling on my arm. We like to think he was an undercover policeman that was making sure I wasn't being attacked, but in all reality we really don't think so. The creep factor kicked in stronger and we decided to just go back to the hotel to try to get it back in place. Nothing worked there either; this thing was stuck. So what do most tourists do at 10:00pm in Vegas? Well most people gamble or look at all the lights and take in the sites. Not my family; we go to the local ER.

So off in the taxi cab my parents and I go. The ER we were taken to was grungy and scary. We were put in an ER bay to wait for the doctor. It was a sheet on a bed; no blanket, no pillow, no chairs, nothing. My mom asked for at least a pillow to prop my arm with but it never came. So, as I have said before, my mom takes things into her own hands. She saw a supply cart at the end of the hallway so down she marched past the nurses' station with all of them staring at her as she grabbed a pillow and a blanket. She walked past the nurses' station again and nobody said a thing. When the doctor came in to see me, he ordered an X-Ray. When the doctor came back with the results, he tried to push my shoulder back in place manually but it didn't budge. The doctor wanted to give me sedation medication to make it easier to put my shoulder back in but I refused. I don't like having sedation because with having both shoulder joint and shoulder blade issues, I can't afford to have the doctor pull too hard and re-damage them. The doctor left the room. I was getting aggravated so I looked at my mom and said, "Come here and push this back in place." She climbed up on the bed and started maneuvering my arm around. POP! It went back in. When the doctor reappeared to try to further talk me into sedation, I looked at him and said, "It's back in place." He then asked, "Well how did that happen?" I then replied, "My mom fixed it." Too bad she didn't get paid.

So the moral of the story is, wherever you go, your problems will follow you; or as we refer to it in our house, you can run, but you can't hide. The good thing though, is you get to decide how you are going to handle the challenges life throws at you. You have the choice to go out, live your life, and face your challenges head on, or you can choose not to. I had every reason under the sun not to travel to Nevada with these precarious shoulders. However, I'm so glad I chose to go. I wouldn't have missed that wedding for the world. Don't deny yourself all the good experiences that life has to offer because there are a lot of good ones out there to gain.

Sunday, February 24, 2013

"The Sweet Spot"

April 2008

My upcoming surgery was scheduled for in April. Once again I had to notify all of my teachers that I would miss 2 weeks of school only to have surgery on my opposite shoulder. Every teacher had that look of skepticism on their faces; was I telling the truth or was I making up some story to miss class. In my sociology class I had a paper that was due one week after my surgery. I was required to have this turned in by the deadline because I knew about the paper in advance. So to make sure I would have this paper done on time, I emailed the completed paper to my teacher the night before surgery.

Finishing up my sociology paper in the hotel room the night before surgery

April 15, 2008 I had left scapular muscle reattachment surgery again in Kentucky because I did retear the muscle off the bone when I slipped on the stairs. When I arrived at the surgery center, the receptionist at the front desk gave me a funky look because it was the 3rd time I was signing in for surgery in  the past 5 months; I felt like a "surgical frequent flyer".  In this surgery, Dr. B made 4 sets of drill holes and had to reattach my rhomboid muscles. When I slipped down the stairs, my rhomboid muscles ripped along the entire medial (side of shoulder blade closest to spine) border of my shoulder blade almost down to the bottom. This explains why it hurt so badly when I slipped down the stairs.

Now is when things get CRAZY once again. I remember bits and pieces of post-op and I remember being wheeled to the car. It's as though when that car door shut, so did my memory. The next part of this blog my mom (Karen) is writing because I have no recollection whatsoever.

Once we (her dad & I) got Meg in the car, we were back at the hotel in 5 minutes. We wheeled her up to our room on the 2nd floor. As we normally do, we got her settled in the bed and propped with pillows. I've done this often enough to know her routine of wanting to eat Jello or a fruit cup right away. This time things were different from the word go. She did not want to eat. I managed to feed her a couple bites of Jello but she kept falling asleep. We let her sleep but noticed that this was not the normal sleep she has after surgery. She laid on that bed not moving (usually we are constantly re-propping pillows to get her comfortable). She was unaware of the noise from the T.V. and us talking. Something just didn't seem right. I called the surgery center and spoke to her nurse. Her nurse said, "It could still be from the anesthesia; see how she is in 30-45 minutes and call back if she's the same." The next half hour was the longest half hour of my life. Meg's breathing was very deep. When I touched her she didn't move.

I called the nurse back to tell her that Meg's condition hasn't changed and seemed to be worsening. The nurse advised us to press on her incision to try to get a response. There was none. She then said to rub our knuckles on her sternum and place ice on her body. No response. In the meantime her breathing seemed to be getting deeper and she was drooling and her saliva seemed to be gurgling in her throat. Her nurse told us to call 911.

My husband and I continued to try to get a response as we listened to the sirens getting closer. Eight paramedics joined us in our room. They tried to get a response out of Meg but they were unsuccessful and prepped her for transport. The one paramedic looked at me and asked, "Is this your daughter's normal affect?" I looked at my daughter not moving, drooling, and gurgling on her spit. I turned and met his eyes, and said, "No, she is a normal teenage girl, she moves, she talks. This is anything but normal." Then he asked, how much pain medication I had given her. I responded, "None. She was so medicated from the surgery center she didn't need anything. The surgery center had given her the same amount of medication as in her past surgeries but it was administered in a shorter period of time."

The paramedics went to transfer Meg to the gurney. Both my husband and I jumped in warning them on how they have to be so very careful because she just had surgery on her left side and had surgery on her right side 2 months earlier. The paramedics made a sling out of the bed sheet and 4 of them scooped her up and placed her gently on the gurney. They then took her through the hotel and out to the ambulance. Seeing as all of this was happening at a hotel, there were people looking out their windows and wandering around outside watching all the action.

Those paramedics could not have been more careful and nice. Next stop: the ER.

They allowed me to ride in the ambulance. As soon as they got her in the ambulance they gave her a shot of Narcan (this reverses the effects of narcotics). I was sitting in the front seat of the ambulance when I heard her voice. I have never been more overjoyed to hear her. I had just spent the last hour scared to death that the nonresponsive person in the bed may never wake up. I have never been more afraid.

When the paramedics got Meg in the ER, she was rushed back to a room and surrounded by a lot of medical staff. They placed a huge special oxygen mask on her face; it looked like something Darth Vader would wear. Even though she had spoken, her eyes were still very vacant, and she still wasn't with us. As I was talking with the doctor, all of a sudden Meg's eyes locked on mine and what I saw in her eyes was nothing short of being terrified. I said, "Meg do you hear me?" I then looked at the doctor and said, "She's back." Thank God.

Now I (Meg) will be taking over the story again...

I remember waking up in what appeared to be a hospital room. I was so confused. I knew I had my surgery because I looked down at my brace. I knew I left recovery because I remember getting into the car. I knew I wasn't in the hotel because the hotel didn't have bright fluorescent lights above your head and doctors and nurses all around. All I thought was, "What the heck is going on?" and "What the heck is this giant contraption on my face?" I saw my mom at the foot of the bed and locked eyes with her. I was scared to death. The doctor came to my side and explained what was going on. He told me I fell into a deep sleep from the medications that were given to me in recovery. He wanted me to wear the mask for some more time because he wanted my oxygen level higher. Soon thereafter, the doctor removed the mask and decided it would be in my best interest to be admitted to the hospital for observation. They wanted me to stay because they wanted to make sure I didn't relapse.

I didn't realize when they admitted me, that I wasn't allowed to have any pain medication at all. The doctors and nurses were afraid that if they gave me any pain medication besides over-the-counter Tylenol I would go into what is commonly known in the medical world as "The Sweet Spot." This is when people who have been living in chronic pain fall asleep and find that place of relief and sink into it-thus, "The Sweet Spot". This was not an error on anyone's behalf. It's just when the body finds a place of no pain and wants to stay in it.

Needless to say, it was an extremely long night. Having major surgery and no pain medication is brutal. You have to think about it, skin is cut, muscles are detached to get to the injury, drill holes are made into the bone and sutures are used to reattach the muscles to the bone, followed by staples to close your skin. On top of it, you have to lay on your incision because you don't have the option to lay on your right side because it was still healing. Sucks huh?

Thankfully the next day I was released from the hospital and allowed to take my medications. Sometimes you can't get out of a bad situation but time does go by. You just have to dig deep and go with the flow. Eventually things will get better.

You can see the incision is longer on my left side.
This is because the muscle ripped farther down
when I slipped down the stairs. 

Thursday, February 21, 2013

Reinjury + Surgery + Tornado= Bad Combo

November/December 2007

Recovery from the left scapular muscle reattachment surgery was difficult. When you have your initial surgical consultation with the doctor, they try to prepare you for what you will experience. They say, "you will have discomfort." In my world that means awful, terrible, pain. They also say, "you have to lay low for a couple days." In my experience, this hasn't been quite accurate. Depending on the procedure that is done, it takes a lot longer than a couple days to bounce back. They tell you, "you will wear a brace for X amount of weeks." However, they don't explain to you how this looks in day to day life. Ex: getting dressed- it takes 2 people until you learn how to do it on your own. Ex: Showering- the first couple weeks after scapular surgery you need to have help showering; there is no, "I will try it on my own and see how it goes" mentality. My mom helped me with my showers. I am a very modest person, so we added the extra step of getting me in a bathing suit before throwing me in the water. To my mom's credit she has and still is very respectful and has/ continues to go along with this. With the scapular surgery your arm needs to stay in a neutral position. You can't bring your arm to your stomach and you can't move it out to the side either. You are positioned as though you are shaking hands with somebody and your elbow stays at your side. My friends and family would tease me and tell me to point to the car because it always looked like I was pointing at something (to those friends and family members that are reading this blog, you know who you are..haha). Also, when the doctor or nurse says, "shoulder brace", I was thinking a basic shoulder sling. I was shocked when I woke up from surgery to see this giant brace strapped to me. It was the biggest shoulder brace I had ever seen and I had to wear it 24/7 for about 6 weeks. This includes sleeping too. I am a stomach sleeper so this made for many restless nights.

Advice: If you ever need shoulder surgery, it is very helpful
to put a pillow or rolled up blanket under your brace
because it helps relieve some of the pressure that your
other shoulder feels because it takes some of the weight away.

Since my right scapula still needed surgery, it was feeling worse because the weight of the sling sat on top of my right shoulder. There really isn't any way around it, so it is just something I learned to deal with. It was also hard readjusting in bed or getting up from a seated position because I would have to push off with my right arm and those scapular muscles were still detached. I learned during this time, I needed to do ab exercises so I wouldn't have to use my arms to get myself up from a laying down or sitting position. It would make my life a whole lot easier for when I would have my right scapular surgery February 5, 2008. To this day, every time there is a surgery, I go into "surgical training mode" weeks before the surgery because I want to be in the best shape I possibly can for afterwards. It makes it a million times easier when you have a stronger core because your balance is better and you learn to maneuver around without the use of your arms.

Thanksgiving 2007. Just a side view of how
my right scapula sat. Kind of looks like I have
football pads on that shoulder because my scapula
sat higher up on my back causing my shoulder to roll forward.
By Christmas, I was out of the shoulder brace. I was so happy for 2007 to be done and over with. Between the time spent in the hospitals, having to use a wheelchair for 6 weeks, doctor consultations, the pain clinic and out of state surgery, I literally spent over 2 months living in hotels that year.

January 2008

At the beginning of January 2008, I went to a community college and signed up for classes. My plan was to go into nursing; that semester I took algebra, English, psychology and sociology. I was looking forward to classes which started January 19, 2008. That day, class started at 9:00; I had math and sociology. I got up in the morning and got ready. When I was upstairs, my dad yelled up he was going to go start the car to warm it up (I am not allowed to drive with the condition of my shoulders. I depend on others). I said, "Okay, I'll be down in a minute." Then something really, really bad happened. I was wearing socks and as I was going down the stairs, my left foot slipped on the carpeting. I grabbed the railing with my left arm (arm that had surgery 2 months prior). As I held the railing, my body kept going down the stairs, and my left arm was yanked above my head. I felt something rip where I had the surgery. The pain was intense. I stood up and tried walking to go sit on the couch, but it hurt to even straighten my back because of the pain over my shoulder blade. My shoulder was rolled way forward. I fell to my knees as I tried to get my shoulder blade to sit back where it was supposed to. My dad walked in the house and I stood up and looked at him crying. He looked at me with eyes wide. I told him what just happened. He told me to go sit on the couch and ice it. I said, "No, I'll put my brace on. Today is the first day of class. We have to leave or I'll be late."
In the car, I put make-up on my face so nobody would be able tell that I was crying or not feeling well. I went to my classes; not a single person knew what had happened. When my dad picked me up from school, I got in the car and started to cry. I knew I reinjured my left side and I was scheduled to have surgery on my right side 2 weeks later...crap.
I notified all of my teachers that I would miss 2 weeks of class so they could tell me what work would be covered during that time. On the 9 hour drive to Kentucky, I worked on homework so I wouldn't have as much to make up after surgery. Now that I have been to Kentucky a couple of times, it is funny how the car ride starts to look familiar. At least homework helps make the time go by faster.

February 2008
Feb. 5, 2008 I had right scapular muscle reattachment surgery as well as a capsular plication because I was subluxating anteriorly (shoulder moving out the front) and the capsular plication is supposed to tighten the capsule to prevent it from doing that. 3 sets of drill holes were made in my scapula to suture back my lower trapezius and rhomboid muscles that were detached. This surgery too, was an outpatient procedure, so my parents and I went back to the hotel. In comparison to the surgery in Nov. this one was more painful because they had to do additional work in the joint. Thank God for pain medication because it is definitely needed. I still woke up feeling like I was hit by a truck. It was still difficult to get comfortable, and I still couldn't push off on my other arm to get up. It is really, really hard to compensate for an injured limb when the other limb is injured also.

The rest of that day was rather uneventful until the middle of the night...that's when things got CRAZY!!!

At night when my parents and I were sleeping, all of a sudden we were woken up out of a deep sleep by this insanely loud noise. We all flew up and looked at each other. It sounded as if a train or an airplane landed on the roof above our heads. I gotta say, flying up that fast killed like no other over my shoulder blade. I took some pain medication to alleviate some of the pain. About 5 minutes later we got a phone call from the front desk saying there has been a tornado and we need to leave our room immediately. Thank God for the concrete ceiling above our heads because we were on the 3rd floor; the highest floor in that section of the hotel and the roof was ripped off. So now my parents and I had to leave our hotel room and go downstairs; it sounds easier than it actually was.

When we opened our door, it was like entering another world. There were cables hanging from the ceiling as water poured onto the carpet.  The elevators were not operating. Some of the hallways were pitch-black. I was drugged to say the least since I was only 12 hours post-op. My parents had to guide me to the stairwell. We opened the door and met other people there. The stairwell was pitch-black, crowded, and just a few inches wider than I was with my brace on. My parents were trying to get me down the stairs without falling over or bumping into anyone. Thankfully we were all going in the same direction. We then headed to the center of the hotel where all of the other hotel guests were located. Unfortunately, it was located directly under a giant glass skylight. Doesn't sound like the safest place to be standing in the event that another tornado was to come through. My parents were not too comfortable with it so they took me out to a more deserted area of the hotel. We were lucky enough to find a chair for me to sit in. I was in so much pain from all of the jostling around. I could sense all of the stares looking at me since I know I looked pathetically miserable. I just kept my head down and hunched over to try to "hide" from them. After some time passed, we were told it was safe to go back to our hotel room. Shortly after my parents got me settled back in bed, the phone rings and the front desk tells us how the section of the hotel that we were in sustained the worst amount of damage so we needed to evacuate our room and they were going to transfer us to a different location immediately. Talk about a long night!!!  Looking back on it now we laugh. At that time, it was so ridiculously difficult and one of those, you've got to be kidding me moments.

This is what was right outside of our "old" hotel room.
These pictures were taken the next morning, so there
was no water coming in at this point.

 The ceiling right outside of our "old" room
Insulation from the attic was over EVERYTHING 

 This tree should not be leaning that way.

Big trees that were broken in half

At my post-op appointment a few days later, the first thing Dr. B asked us was if we were staying at the hotel next door because the roof of the hotel was ripped off by the tornado. We told him yes that is where we were staying. He then just shook his head back and forth and chuckled. Dr. B changed my bandages and said I could take them off when I got home. He also said to have my staples removed in 10-14 days. 
A week after surgery we drove back home. The car ride was miserable; you feel every single bump and there is just no good way to get comfortable. They need to make Lazy Boy Recliners that fit in cars; that would make for a much smoother car ride.   

The bandaging

My new "normal" looking back. That tubing is a pain
 pump that is put in to help with the pain.
My mom removes it when we get home.

The pain pump was successfully removed. 

The following week, I returned back to school. It was SO very difficult. My energy level was low between the surgery, recovering, and hurting. The hallways at school are crowded with students that aren't always paying attention, and you're trying to maneuver around all of them without getting bumped. I had to hold my books in my left arm because I had this big bulky brace on my right side. I couldn't use one of those backpacks that you pull that's on wheels because I couldn't rotate my left arm that way and I didn't have the scapular strength. Classes were about 90 minutes long each and I had to sit in an uncomfortable, hard, straight back chair. I not only had to complete missed assignments, but I also had to complete new assignments too on time. People aren't as nice as you would think; they would see me struggling to get a door open or holding all these books and rather than offer to help, they would just look at me and walk away. I learned to overcome hurdles like these and do everything for myself which is probably one of the reasons why I am so darn stubborn today. School was also difficult because I am right handed and wasn't allowed to use my right hand. To learn how to write lefty, I used my niece's learning to write books for practice. I had to learn to do numbers too because of my algebra class. My teacher even noticed the difference as the weeks went on. His comment that stands out to me was, "Wow! You are getting better at writing lefty. Your writing is legible now." My grades are very important to me so I made sure to get good grades on all assignments. It took me about a week to get completely caught up with all of my classes.

Besides learning to write left handed, I had to learn all of the various tasks you do in a day such as eating, brushing your teeth, showering, folding clothes, getting the button on jeans snapped etc. A few days after we got home, my parents brought me to Dr. K so he could remove my staples. Even though it doesn't take very long to remove staples, you still have to wait your turn in the waiting room. We have become very creative in our sense of fun and trying to occupy ourselves like children as we wait our turn. Some of things we do to amuse ourselves are playing "I Spy with my little eye", playing cards, or just pulling out the camera and making fools of ourselves.

Doesn't take much to amuse us!

When I followed up with Dr. B several weeks later he examined my left shoulder/scapula because it wasn't feeling any better from when I slipped down the stairs. After some testing, it was determined that I would need another surgery. So no sooner did I finally catch up on schoolwork I found out that I would have to travel back to Kentucky in several weeks to have surgery on my left shoulder...again. This upcoming surgery will bring me to a total of 8 surgeries in 2 years and 2 months.  

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

Monday, February 18, 2013

Scapular Pain Validation

August 2007

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

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

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

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

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

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

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

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

The best, most supportive parents I could have ever asked for.
Having fun at the Kentucky Horse Park after seeing Dr. B
At Keeneland Horse Track. It was such a HOT
day; there was zero shade and it was 90 degrees out.
Too bad we didn't win any money at the track.
I was so humiliated taking this picture. There is a
busy street like 10 feet away from where I was
standing and my mom insisted on me taking a picture
with "Big Boy" because it would make a good memory.
She was right.

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

You still have to have fun even when you hurt. My favorite
 holiday is Halloween so I dressed up as Cinderella and my niece
was Alice from Alice and Wonderland. 

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

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

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

Friday, February 15, 2013

"Come on Mom, Let's Go Have a Little Fun"

July/August 2007

Imagine going to a clinic under the impression that the medical professionals that you would be working with would be helping you to figure out what type of injury you have and then you realize once you were in the clinic it was anything but that. Rather than help you, you were told you had to learn to accept the way you are, and when you say there is something seriously wrong they didn’t believe a word that you said. Well that’s what happened to me. This pain program, I’m sure it is very helpful for people who need help learning tools of how to handle living with their chronic pain. However, the tools they were teaching I was already applying to my life. I felt very misunderstood up there and I refused to accept living with a condition that didn’t even have an exact diagnosis. My orthopedics told me I had severe scapular winging but they weren't sure why. The pain clinic didn’t want to acknowledge that there was something very wrong with my shoulder blades; so for me this program was brainwashing hell.

You can think of this pain program like school. It’s a day filled with learning different subjects, along with attending physical therapy and occupational therapy. You would be released at the end of the day and when you wake up in the morning, the whole process starts all over again.

I have never hated a place more than I did at this Minnesota pain clinic. I truly believe they did more harm than good for me. The whole purpose behind going to this pain clinic in the first place, was because I had shaking/tremors down the right side of my body. The evil neurologist that I saw said I needed to go there to learn to deal with it. However, before I started the program, the shaking had resolved itself and I was told by IL doctors it was probably a virus. My father called the director of the pain clinic to let her know that I was out of a wheelchair because the shaking had stopped. He also told her I still had scapular winging. The director told him that I should still come to the pain program because she still felt it would be a huge benefit.

I should have known something wasn't quite right when I arrived to the pain clinic that first day. The nurse greeted my mom and I and said, "Are there any changes in your health?" I said, "Yes. The shaking down the right side of my body is gone." The nurse looked at me as she patted me on my shoulder and said, "That's nice dear" and walked away. My mom and I looked at each other confused. Wouldn't you think the nurse would send me back to the neurologist, or at least call him to notify him on the change in my condition? Nope, she didn't. She walked away and it was never brought up again. Very strange in my opinion.

Over the course of the next couple weeks physical therapy thought it would benefit me to do exercises that worked on getting my arms over my head since I was unable to, due to the pain. They completely ignored the "chicken wing" look I had over my shoulder blades and said I have to learn to deal with it. Weights would be put in my hands and I had to do various exercises. I would tell them that it killed but what I said didn't really seem to matter. Therefore, to please the physical therapists I would do the exercises but alter proper body mechanics in order to get the exercises done.  This did not please them either. It turned into a constant daily battle.

If I was able to do the exercises I would have. There
used to not be a problem with getting my shoulders up 
It wasn't a "fear" of pain. It was a matter of them
being injured

There are two specific events that happened at occupational therapy that stand out in my mind. The first was when the occupational therapist went around the table and had everyone say something they have learned. I remember sitting there thinking, “Crap, what am I supposed to say? I haven’t learned anything since I’ve been here.” It was my turn so I was honest. I said I haven’t learned anything since being here. The therapist looked at me and said there must be something that I must have learned and I responded no. She then asked with a tone in her voice, “Then why are you in this program?” I looked at her and said, “Good question, why don’t you go call the neurologist that sent me here because I have no clue and ask him.” I sincerely meant no disrespect but I really hadn't learned anything. I was just as confused as to why I was there as they seemed to be. In my discharge summary papers, it says that I was not being invested in the program and I didn't learn anything due to my "lack of effort".

The second event that stands out is the day the occupational therapist said we were going to play volleyball.  Playing volleyball would be a fun way of distracting one from the pain that they were in. Knowing the condition that my shoulder blades were in, I 100% refused to play. I could tell the therapist was getting aggravated with me because I refused to play; quite frankly though, I could care less how the therapist felt. I knew my body and I knew there was something very wrong with my shoulder blades. I knew if I played volleyball I would make my situation worse. Again in my discharge papers, the clinic wrote I had a, "lack of effort" and this time they put I was unwilling to get past my pain and participate in a fun activity. Looking back, I should have played volleyball and instead of using my arms to volley the ball, I should have used my years of soccer training and used my legs; now that would have been funny.

Obviously not the most flattering picture of my head but if you
look at the view of my upper back where my shoulder blades
 are it's like a plank. My shoulders are very rounded.

One of the biggest damages I suffered from this pain clinic was mentally. I met with a panel of psychiatric people daily on a one on one basis (as did the rest of the participants). They asked me why I kept saying, “I was fine” when they would ask how I was doing. I told them they are teaching mixed messages. If I were to answer honestly, it would be seen as a complaining behavior. So I resorted to saying fine because I wasn’t good but I wasn’t bad. They then told me to tell them how I honestly felt so I did. I told them I hurt like hell and my shoulder blades were killing me and no one seems to care. They then told me there was nothing wrong with them. I then proceeded to pop my shoulder blades out of place and I looked at the individuals around the table and said, “If one of you at this table is able to do what I am doing with my shoulder blades, then fine there is nothing wrong.” I waited a minute as they all looked at me. I then said, “Seeing as none of you can, then there is an obvious problem.” I was marked down for not cooperating. All I did was spoke the truth and told them how I was honestly feeling.

Tiger I drew while at the hotel to help relieve the stress
of having to be in this pain clinic.

Fridays were family days. On one Friday, my parents skipped family day to plant themselves at the orthopedic Dr. S’s office. At that appointment my parents were brutally honest and told him all that was going on at this pain clinic. They told him the pain clinic felt that we should stop seeking shoulder blade treatment and that they completely disregarded his advice. Dr. S was none to happy and made it very clear to my parents that unfortunately his job requires him to tell people when to stop seeking medical treatment. In my case, he had 2 suggestions. One: come back in 3 years when technology advances or two, go to Kentucky to see Dr. B the “Scapular Guru.” He made it very clear that HE is the MD and that his instructions far overruled the pain clinic. THANK GOD I had someone who believed me and was trying to help me.

Needless to say, my mom and dad updated the pain clinic on Dr. S’s recommendation.

 Now things REALLY get crazy…

August 15, 2007 my mom dropped me off at the pain clinic. It was my last day before “graduating” the program. At lunchtime I was pulled to the side by my nurse and was informed that I have been released from the program and that I should call my mom to have her come pick me up. My stunned mother came to pick me up. Before we would leave, she wanted to talk to the director and my head nurse. My mom and I went into the director's office and sat down to hear the explanations. The director started to blame my lack of success in the program was due to my attitude and unwillingness to try. My jaw dropped. I was stunned. I was furious. I was downright insulted. Anyone that has known me in all my life up till now knew I was a very shy, hard working, get along girl. I couldn't sit there listening to this woman bash my character. I got up, looked at the director and my nurse and said, "This is bulls*&#" I then left the room and I somehow managed not to slam the door shut. Instead it was a nice quiet click.

My mother on the other hand stayed in the room. She says, her "mama bear claws" grew that day. The director and nurse studied my mom to see what her reaction would be. Would she get up and leave? Would she scream? Would she run after me? Nope. That's not my mom's style. She sat there and met their eyes. She validated my character and told them they were wrong. My mom has worked for a hospital for a long time. She told them, "The reason you are dismissing her today and not allowing her to complete the program, is because she is not a success story for your program. Your statistics will be affected if she is marked down as a failure. It looks better for you, if she just leaves" Now it was their turn to be stunned. Silence.

They handed my mom the paperwork and we went back to the hotel. While going through the discharge papers, we came across the line that stated, “PT unavailable for dismissal review due to the abruptness of HER decision to leave the program.” WHAT THE HECK?!? They dismissed me!! I had one day left till completion. If I didn’t complete it my insurance wouldn’t pay for it.  My mom took charge and told me grab my stuff we are going back. Yikes was I nervous!

The reality of the situation as we were walking up to the doors got a hold of my mom. Yikes, now she was nervous! I took her by the hand and said, “Come on mom, let’s go have a little fun.” So hand in hand we entered the building. The director heard of our being there and fled the department. My mom ordered me to go plant myself in the next class and boy did I make that teacher uncomfortable when she walked in and saw me there. My mom in the meantime had my nurse rewrite the discharge papers to adequately depict the TRUTH of what had occurred. My mom says the nurse seemed to be acting very nervous around her. However, the funny part is, anybody that knows my mom couldn't picture her being intimidating in the least. Just shows how screwed up this whole situation became.

Still so fortunate to have my mom on my side

The nurse came into the classroom to get me. My mom and I left that building and never looked back. This was the lowest point of my life mentally. I went to this program with high hopes of finding a diagnosis. I did not expect to have the physical torture to my shoulder blades on a daily basis; but more than that, I did not expect the mental mind games that would come from being in that program. My mom insists that I suffer from PTSD from my time spent up there. You know, it sounds funny but I think there is an element of truth. Ever since that time, it has been harder for me to be honest with people when they ask how I am doing. I oftentimes find myself minimizing how I am really feeling. This program made me doubt myself. To this day I can hear the skepticism in their voices and that is not good. My experience has made it hard for me to trust a new doctor.

It scares me to think what condition my shoulders would be in today if I had followed the suggestions of the pain clinic and not the orthopedic. The pain clinic was soooooooo wrong.

Next stop is driving to Kentucky to meet with the  "Scapular Guru" and finally get an answer....

Tuesday, February 12, 2013

Treated Like an Animal

June/July 2007

After being released from the Chicago hospital, all my family and I could do was wait for the doctors to get back to us and tell us what to do next. The shaking and weakness was still on the right side of my body two and half weeks after the initial start. Life didn't stop. There were still many appointments to go to and now my mom had to load up the wheelchair in the back of the car in addition to me. Even navigating around my own home had a whole new look about it. When I would attempt to walk, my dad would have to stand behind me and hold me around my waist so I wouldn't fall. Since our house has stairs, I needed to physically crawl up them to get to the top. This killed my shoulder blades like no other but I didn't want my family to help me. When I would come down the stairs I had to sit, and scoot down like a baby. It was so hard to wrap my head around the condition that my body was in. I had just turned 18 on June 25th. To me it was not a day of celebration, so there are no pictures of that day.

One day we got a phone call and it was advised by several doctors in the Chicago land area that I needed to go up to a well known Minnesota hospital for more extensive testing and get seen by the "best" doctors. I initially thought it was a good thing that I was going up there. WOW was I wrong. I got there July 8, 2007 and checked into the Marriott; all of my testing would begin the next day. From July 9th-July 13th I had so many tests and met with several doctors. Some tests such as x-rays, EKG, and urine collection weren't painful. Others like blood tests weren't exactly painful, however it made me sick. I remember sitting in the wheelchair and the lab tech came over carrying a basket of blood tubes. I assumed that was her stash for the morning. Little did I know, all 18 of those tubes were strictly for me. She stared at me as tube, after tube of blood was taken with a strange look on her face; by the time she finished, I was feeling very ill and weak. My parents got me juice when this was completed; my parents were so mad that they took all this blood and knew I wasn't feeling well and didn't offer juice and cookies like they do with blood donations to raise my sugar. The reason for all of this blood was to see if I had any genetic diseases such as Marfan's Syndrome, Ehlers Danlos etc. Thankfully ALL genetic diseases came back negative. The remainder of the tests were very painful for me. The EMG is where they stick needles in you to check the communication of your nerves and muscles. This test was SOOO painful when they did it over my shoulder blades. I just laid there but wanted to scream. The other painful test was the movement analysis evaluation. I had to stand on my legs that wouldn't hold me up and raise my arms straight in front of me which caused my shoulder blades to wing out like a chicken. This was such a long exhausting test. There were wire leads hooked up to me that measured activity onto a machine. By the time it ended I was so exhausted and in so much pain. I was crawling out of my skin.

Life sure isn't easy sometimes

The orthopedic Dr. S and his assistant Dr. R were very thorough and very kind. Dr. S and Dr. R said, "I had severe scapular (shoulder blade) winging. There is definitetly a problem here but the shaking/tremors have to be addressed first." The rheumatologist Dr. Y said there was nothing wrong in his area but there is a problem with my shoulder blades. All 3 of these doctors treated me like a person with respect and I felt like I was in good hands with them; they wanted me to go see a neurologist.

From there things went south. My parents and I arrived for the appointment with the neurologist. My dad waited in the waiting room and my mom came back with me. I had hopes that he would be nice because he had pictures of his grandchildren and family sitting on his desk. When he knocked on the door, what walked into the room was a very mellow dramatic evil person without an ounce of respect or kindness. It was as if the Wizard of Oz walked into the room putting on a show for us. He told me that none of the surgeries on my leg worked because I still had pain in them. I told him he was wrong. The surgeries on my legs were necessary and they did help. There was pain in the joints because all of the surgery was on my right leg except for one, and my right leg has been shaking for the past few weeks every time I would go to walk. We were not seeing eye to eye at all. Then it was time for the examination. By now I've had enough experience to know that an exam can be uncomfortable and downright painful. However, the exam that I endured is nothing less than pure torture. This doctor, if you can even call him that, treated me like I was an animal. I am not being comical. I am being dead serious.

The Wizard of Oz had me put on a hospital gown. When I walked out of the changing room, The Wizard grabbed my left arm unexpectedly and started dragging me back and forth in the room like a dog on a leash at a fast pace. I was in tears. My right side shook like crazy. I stumbled. I was off balance. My ankle, knee and hips hurt from the surgeries. I told him to stop because I just had left hip surgery 4 months earlier and I was afraid I was going to fall. He wouldn't. He continued to grab my arm tighter as I tried to get my arm away from him. My mom's eyes were popping out of her head and her jaw was hitting the floor. The Wizard looked at her and said, "Are you okay?" and she said, "What are you doing?!? Enough!!!" She told him to stop and to this day, she says, he is lucky she didn't punch him out. After what seemed like forever, he finally stopped. He then had me sit on the table and looked at my shoulder blades. He then grabbed my left arm once again, only this time yanked it above my head. I yanked my arm and body away from him trying to get away as he continued yanking it. He told me I was making it worse. I told him, "No, you are." To say the least, this meeting was not going well at all.  Before we left, he recommended that I be enrolled in the pain clinic. The clinic would provide physical therapy, occupational therapy, and diagnostics. It would be a holistic experience that combined all modalities of treatment together that I would eat, sleep and breathe for the next several weeks.

We headed back home to Illinois to wait and see if I would be accepted into this program and to see if our insurance would cover it. During this waiting period the shaking/tremors slowly disappeared. My doctors here in Illinois believe I had a rare virus that had to run its course which is why all of the testing I had done came back negative. I guess viruses are hard to pinpoint. It lasted a little over 6 weeks and thank God it was not a disease. You have no idea how happy I was the day I got out of that wheelchair!!!

We got a call from the hospital in Minnesota saying I had been accepted into the pain program. We still decided I should go to the pain program because we figured doctors could now focus on what was wrong with my shoulder blades.

Boy, I never could have imagined what I was getting myself into...

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

Sunday, February 10, 2013

The Hardest Blog to Write

Now that I was officially off of the crutches, I had hopes that the pain in my shoulder blades would get better. Unfortunately, that was not the case. Instead of getting better, the pain got progressively worse and worse. They were screaming and were demanding attention. As hard as the past year had been up to that point with needing 5 surgeries on my leg to correct the damage from the fall, nothing could have ever prepared me for what was soon to happen.

June 2007

The first week of June in 2007 I graduated from high school. I was so proud of myself because I had 3 surgeries during my senior year, had a ton of shoulder blade pain, and still got all A in my classes and completed all my coursework on time. I worked SO hard at physical therapy and was able to walk across the stage to get my diploma.

Walking in line at graduation. I'm the one in the middle with the white cap and gown
Exactly one week after graduation, my world turned around in a way that I never saw coming or could have imagined. The following week I spent the night at my brothers house on a Wednesday. The next day he dropped me off at physical therapy. When I got home from PT, I didn't feel quite right so I took my niece Emily for a walk around the block thinking the fresh air might do me good. By the time I got home, I felt ill. As the night went on, my head became heavier and heavier. I had weird nerve pain up my neck, and I had weird sensations down my right leg. My mom offered to bring me to the ER but I declined because my symptoms were so nonspecific; nothing was traumatic enough making me think I needed an ER. I just knew I didn't feel well and felt very, very weak. I thought getting some sleep would help. If I woke up the next morning feeling the same way then I would go.

Hell breaks loose. When I woke up the next morning I was laying on my back. I had this feeling that something wasn't right. I was afraid to move. When I got up and tried walking towards the landing at the top of the stairs, the right side of my body was shaking uncontrollably. My right leg would not support the weight of my body. As soon as I tried to put any weight on my leg, it was as if that side of my body had a mind of its own. It would not support me. It shook so rapidly; it was something I had never seen or experienced. I had to grasp the hand railings and scream for my mom. I was panicked. I had no clue what was happening to me. She sensed the urgency in my voice and flew into the hall. She looked up at me with wide eyes and a horrified look on her face as I stood there shaking. She said we are going to the ER.

Everything was happening so fast. In the car I kept reassuring my mom I was okay as my right arm and right leg kept shaking. You can only imagine the shock and fright that I had going on within. I officially had zero control over what was happening to my body. The closest way to describe it is to imagine violent uncontrolled shivering. My mom pulled into the ambulance parking spot and waved down a man and had him grab a wheelchair. I was pushed into the hospital and the nursing staff immediately rushed me back to a room where I was surrounded by doctors. My blood pressure was high and my heart was racing. Nurses were scurrying trying to get my shirt off to hook leads up to my chest. An IV was started and all sorts of medications were pumped into me like candy. I was so scared. I didn't know what was happening to me. I later found out the medical staff thought I was having a stroke; thankfully that was not the case.

I spent a week in a local community hospital on lots of various medications. Some of the medications were anti-seizure and others were for pain control for my shoulder blades. I had so many tests done that week. I had heart ultrasounds, brain MRI, nerve testing, kidney ultrasounds, 24 hour urine collection testing, EKG, countless CT scans, and not to mention all of the blood work. At a later time, I found out doctors were looking to see if I had a disease called multiple sclerosis. That whole week was a blur. I remember bits and pieces and my family has had to fill in the gaps that I can't remember. All of my tests were coming back normal. The community hospital couldn't come to a diagnosis so they decided I should be transferred out by ambulance to a well known Chicago hospital for more testing. My family and I chose to go to the hospital where Dr. K was located because even though I was having neurological problems, I was still having orthopedic problems with my shoulder blades.

At the Chicago hospital, the doctors reviewed my tests. Since all of my test results were normal they sent in another neurologist. To this day my mom and I refer to her as "Miss. Pumps" because she wore high pump shoes. Miss. Pumps performed a multitude of basic neurological testing. She said, "I am going to give you 3 words. I want you to remember them". I will probably remember those 3 words the rest of my life. They are apple, tree, and cookie cutter. She then said, "How many times does the letter A appear in the sentence Happy Birthday to Anna?" Answer: 4. It's 6 years later and I still remember that test as vividly as the day it happened. That night and the following day, I was taken off ALL medication which was shear hell. I had to go thorough psychiatric evaluation as did my mom because Miss. Pumps seemed to think I was being dramatic, and putting on a show for attention. She had learned about my surgical history and passing away of my grandma that year and felt I was acting out seeking attention. Can you even believe that?!?! Thankfully, the psychiatrist recognized this was a physical issue and went back to Miss. Pumps to tell her that I was not attention seeking and it was not a psychological issue. He also told her there was obvious deformity in my shoulder blades that needed attention.

After talking to the psychiatrist, Miss. Pumps thought it was in my best interest to be released from the hospital and sent home. Once again, my parents and I were left to find a solution to the problem on our own. Before heading home, my parents called my orthopedic Dr. K who told them to bring me over so he could see me. This was a new experience for me because I had to be pushed in a wheelchair in order to get to Dr. K. I can't find adjectives to describe how horrible I felt that day. I was SO sick, so scared, so tired, and in SO much pain (shoulder blades). My parents wheeled me into a room. I felt so humiliated and didn't want Dr. K seeing me in a wheelchair so hobbled my way into a regular office chair before he came in. When Dr. K knocked on the door, I was sitting hunched over resting my head on my left hand holding myself up. He came in took a look at me and in that moment I knew I looked as pathetic as I felt. He walked towards me, squatted down at my level and met my eyes and asked, "How are you feeling?" I looked at him pathetically and said, "I'm tired and I hurt." He then patted the exam table and asked me to sit up there. I didn't want Dr. K to see me shake when I would walk, so I hopped onto the exam table instead. My mom looked at me and said, "You have to show him." I refused. Dr. K then said, "Can I please see you walk?" I huffed and glared at my mom with such piercing anger in my eyes because she was making me do the one thing I didn't want to. With extreme reluctance, I got up and started to walk. Dr. K's eyes showed great concern. I knew we were in a really bad spot.

Even though the inability to walk was the highest priority at that point, Dr. K took the time to evaluate my shoulder blades also. Orthopedic evaluations are oftentimes very painful. Dr. K raised my arm over my head. The pain was so severe. I yanked my arm back down, hunched over, and felt my knees go weak. The pain was indescribable. My mom says, his eyes widened, and the expression on his face said it all. There was a major problem. Dr. K wanted to make some phone calls and think about the proper course of treatment so we left. Little did I know, I was soon to be sent to an out of state hospital for treatment.

Accepting an MVP award at Carthage College Soccer Camp in 2005

Never did I think I would look like this, or for that matter be in this situation less than 2 years later...

My dad and I

Tuesday, February 5, 2013

A Glimpse At the Present

February 2013

Now that the leg injuries are over, I think it is important to know what my status is now in the present before I even discuss how things even got to this point. It will boggle your mind, just as it does mine, when you eventually read the blogs to come that discuss all the various doctors visits, testing, exercises, traveling, mental pressures and difficult, although sometimes humorous hoops, I have gone through that have brought me to this point.

Right now I am 23 years old, and I have been trying to get better for over 7 years. On November 9, 2012 I had my 10th right sided shoulder surgery in Colorado; an anterior capsulolabral reconstruction with allograft (cadaver tissue). This brought my total number of surgeries all together since 2006 up to 22; I've had 1 on my right ankle, 2 on my right knee, both hips, 7 on my left shoulder and 10 on my right shoulder. If not the most, it sure was one of my most painful shoulder surgeries I have ever had. This surgery entailed putting 4 anchors and 2 screws into the bone to secure the donated tendon in the front of my shoulder. The new tendon will help give the front of my shoulder more stability and hopefully prevent it from subluxating. I had a different procedure (open capsular shift) done in Illinois earlier that year in March which lasted 4 months before it started subluxating (partial dislocation) out the front on a daily basis. To most people you would think, "Wow 4 months that isn't long." For me though, it was the longest any shoulder surgery lasted. However, by the time September came, I was dislocating which caused me to have to wear a brace that locked my elbow at my side. This prevented me from moving my shoulder because anytime I moved, I would shift out of place.

My niece Lizzy & I at the pumpkin patch. The white around my waist is
the brace, and the gray straps secured my arm in place.
Below are pictures of how much motion I had the morning of surgery 11-9-12.

Flexion: moving arm forward

Side view of flexion

External Rotation 

Abduction: movement to the side

 Surgery #22 and still smiling and playing cards with my mom before being wheeled back to surgery
(No, I am not on any "happy" medicine but my right arm is COMPLETELY numb)

When you wake up in the morning, you never know for sure where your day is going to take you...

Thursday, January 31, 2013 started as just a typical day. I woke up, ate breakfast, and my mom drove me to physical therapy. The past couple weeks have been rather rough. My shoulders, especially my right, has been very sore and I've been mentally questioning a lot of things with life. Such as, what career I can do with limited motion and what am I going to do with school. I spend a lot of time thinking what if I don't get my motion back and primarily I wonder why my shoulders keep being problematic and requiring surgeries.

For the past seven years, since the time I became injured, I have always said, "It could always be worse." My mom's breast cancer was a life threatening illness; my injuries are not. She got through her breast cancer, I'll get through my injuries.

Christmas 2004 with my Grandma King and Mom cancer free!

At physical therapy, I was placed in a chair directly in front of a young man. I watched as this young man struggled as he got into his wheelchair from the table. His legs don't work well and he has to physically lift them up to get them on the wheelchair foot holders. My physical therapist offered to help him, and in a determined voice the young man, said, "No, I've got this." I sat in my chair thinking, "Oh, he is just like me in a sense." When you are limited in the things you can do, you want to do for yourself the things you can. I know in my case, I appreciate peoples' help; however, when I am asked if I need help over a task I know I can do, I will be stubborn, and sometimes it may sound like I am being short when I decline. It's only because I need help with so many other things and I want to feel like I have some sort of independence.

When my therapist walked by me and said hello, I looked at him and said, "That man has it rough. As hard as my situation is, at least I can get up and walk from point A to point B." My therapist looked at  me and said, "You would know because of the crutches." I agreed, but in my head I was remembering how hard it was when I was in a wheelchair for 6 weeks due to some unidentified virus that made it extremely difficult to walk. Being in a wheelchair absolutely sucks.

When my therapist and I began working on very basic, minimal shoulder motion exercises things weren't going great but they weren't going bad either. My therapist always has his hands on my shoulder to help give stability/support to the joint and help guide the movement. When we were working on flexion (moving the arm forward) all of a sudden there was a loud, audible, painful pop in the shoulder I had surgery on in November. I looked at my therapist whose eyes were wide and I felt my arm just kind of drop from the pain. I am not one to cry. When I started crying from the pain, I knew something bad had happened. As I gathered myself together and composed myself, I told my therapist he could continue. I needed to know if the pop that just happened was a good one that would make the joint feel better. It moved a little but killed. I was officially worried. It's no ones fault and there are no hard feelings. It's like that old saying, "S#!% Happens!"

Little did I know 9 hours later I would be on a 7:15pm airplane heading to Colorado with my mom to see my surgeon Dr. M the next day. It's a 2.5 hour drive from Denver to Vail, CO. My mom has learned to become an experienced driver and this was her first time driving in the mountains when it was snowing!! I must say, she did a very good job. Us and the car got there and home all in one piece.

Driving to Vail 

The following day I had an MRI of my shoulder in the morning, saw the shoulder therapist and then saw Dr. M in the afternoon. Needless to say, it was a long day. At this point there is no definitive course of treatment. Dr. M injected my shoulder with cortisone. I will now wait the next several weeks to see if my shoulder gets better. If it does not, then the next step would be going back to Colorado for an arthroscopy so they can take a peek inside. For now I will continue going to my wonderful physical therapist here in IL to work on strengthening my muscles and trying to gain some motion back. It was highly recommended to me that I stay in CO working directly with the shoulder therapy specialist for a couple months; anywhere from 6 weeks to 3 months to have both regular physical therapy and pool therapy. My case is so bizarre and complicated that these specialists are thinking outside of the box to create a physical therapy protocol for me.

  Funky depressions that appear with minimal motion.
They came back after whatever it was popped in my shoulder.

  Kinesiotape that helps hold my shoulder in the proper position

I am SO thankful to have such a wonderful team of doctors and therapists. Without any of them I would be so screwed. They have put so much time and effort into my care and I am so appreciative. I have an uphill battle against me this year. It is going to test me and push me probably in ways I haven't yet experienced. I have decided to start blogging my journey because I hope it can help people realize they are not alone in their situations and to not lose hope. You have to keep plugging along and get through the hard days. So here's to a year of a lot of hard work and hopefully a lot of progress.

 "On a Mission" tiger I drew
This tiger pretty much sums up what my mentality will be this year.