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.  

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.