Sunday, June 22, 2014

4 Months of Hope

March 2012

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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