Progression

I feel like this picture some days, looking at myself in the mirror I see a young woman, but I feel so old in my body that it is hard to believe my reflection. 


I seem to be progressing, and not in a good way. 


Some people say that chronic pain doesn't spread, but other people have proven it to exist in research, especially within complex regional pain syndrome or reflex sympathetic dystrophy (which I don't know whether I have or not). But regardless, it seems that my particular condition is one that spreads, and is spreading.


4 years ago the pain started as shin splints in my right leg from overdoing it in volleyball at the start of the season. And then it spread into both legs from ankle to knee;
And then it spread in between my shoulderblades;
And then it spread to my lower back;
And then it spread to the base of my neck;
And then it spread to the top of my neck;
And then it spread to my abdomen and digestive system;
And now it's in my arms, from wrist to elbow.


*Takes a deep breath before starting another sentence*


My point is that my condition is spreading. Point made? I think so. 


Sometimes I wonder what God is doing with all of this. But right now I am trusting in him and trying to move forward. My new verse for this phase is from 1 Chronicles 28:20, ""Be strong and courageous, and do the work. Do not be afraid or discouraged, for the LORD God, my God, is with you. He will not fail you or forsake you." So that's what I'm doing right now. I am starting over and doing the hard work of heading back to the doctors. I may face more rejection, but with God on my side I will be strong and do the work. 


My arms are a new adjustment. Previously when the pain got bad I would occupy myself by sewing, reading, painting, drawing, cooking, all things that involve fine motor skills and using my hands a lot. It's not that I've allowed myself to stop using my hands (how would I live?). But, it does make me think twice about what I do. For example, posting this took lots of time and effort because typing currently produces a burning stinging in my arms. I'm not trying to complain, I am simply explaining reality right now. 

(photocredit)


Take a moment with me and think about your hands. 
Think about everything you use them for in just one hour. From the moment you wake up, you use them to rub your sleepy eyes, turn on the light and start the process of getting ready to face the world. At the end of the day you use them to pull the covers up to your chin as you recharge your weary self to face another day. I know I used to take my hands for granted, and my legs, and my voice, and everything about my body that was just supposed to work properly. But when you have pain that stays, you realize how blessed you really were to have that body part functioning properly for as long as it did. 


Understanding seems like an unfair gain for how much pain takes, but sometimes it is enough. Take time to think about what understanding of your body you have found throughout the years and then leave me a comment.


In other news, All American Girl was so kind as to answer my comment with a post about talking to people about Chronic Pain. It was a great post and made me feel like a mini celebrity! 


In closing, be thankful for the body parts that function well, and be strong, courageous and do the work. Love to you, 


Rachael Ann

Considering Calvinball

(photocredit)

Did anyone else read Calvin and Hobbes all the time when they were younger? I did. I loved the inane and sometimes insane banter between the little boy and his stuffed tiger (who came alive when no one else was looking of course). Lately I have had far too much time to think about my condition and I realized that I'm, in essence, playing Calvinball.

Have you ever felt that way?

You see, there are no rules in Calvinball, just like with many Chronic conditions. There is no referee to complain to when something is just not fair. It just is. Deal with it.

According to Calvin, the only rule is that you can never use the same rules twice. I agree with that application to chronic pain because one day never seems like the last. Maybe for some people it is, but for me, without an actual prognosis, every day is a question mark. When I wake up in the morning I don't know what it's going to be like by lunchtime, afternoon or dinnertime. It could get better, or worse. There seems to be no way to control or predict: just like there is not any real way to control a 6 year old boy's imaginative play.

Like I said. I've had too much time to think lately. Maybe soon there will either be more things to fill my time, or less pain to try to ignore.

What do you think? Does it feel like you're playing a game where you don't know the rules?

Lying or Withholding Information?

(photocredit)

What an applicable question to chronic pain! I'm so curious to see how other people answer this one.

To me this one (referring to chronic pain specifically, applied to the world at large it would take so much longer to answer) is easily answered by a great, big, huge, resounding, "YES!!!" In order to explain further, allow me tell you a story:

In the fall of 2008 Doctor number 500 (approximation, actual numbers may vary) decided that the Sport's Medicine department could do no more for me because, congratulations to me, I had chronic pain! They immediately shipped me off to a Chronic Pain Rehabilitation program that was both a blessing and a curse at the same time.

They immediately told me to stop talking about the pain. We were not to share pain levels, even with family. Ans also to avoid the topic of pain or our condition when talking to others. It was a crazy thought to me; ignoring the most obvious topic of conversation, after all, the pain is with me every nanosecond! But I, like an obedient patient, and I did as they said.

There are still people I am close to to this day who do not know that I have any sort of chronic condition. I worked full time this summer without letting on to any of my co-workers that there is anything 'abnormal' about me besides food intolerances.

There's such a fine line that we, as people living with chronic conditions, balance on every day. One side is dwelling on the pain, bringing it up in every conversation, letting it run my life. The other side is not acknowledging my needs and my unique situation, not letting others see my struggles, and pushing through too much.

Where does the balance lie for you?

So, in summary. Yes. I think it is completely possible! I have become the master of the stonewall, not showing the physical pain that I am in. I am lying to the world, sometimes for my own benefit, without saying a single word.

Beginnings

Life is constantly full of new beginnings isn't it?

Every day that you open your eyes is a beginning. Each person that you meet is the beginning of a relationship. Every moment of the day is new, and unexperienced. 

Hi. My name is Rachael and I'm at a new beginning. Let me tell you a little about myself so that you understand more. 

I am 19 years old

I have a progressive condition that doctors gave up trying to 'fix' years ago. They have called it Complex Regional Pain Syndrome (Reflex Sympathetic Dystrophy) before but never officially.

Because of my condition I do things differently than most people my age. I cannot do anything physically more than walk. That makes it tough sometimes.

In the past year the pain progressed to my stomach. I found food intolerances and they stretch into many different food groups. Currently I cannot eat: dairy, yeast, mango, preservatives, and artificial colors.

Due to a generous state, I was able to complete 2 years of college course-work while in Highschool. I am halfway done to a degree in... Something. Because of my condition I had to leave school at the beginning of this semester. I am self-rehabilitating (I decided that's a word =]) so that someday I can get back.

So. Here I am. At a new beginning. I am starting this blog to chronicle my gains from the pain. I no longer want to have losses, because I have had enough. I lost my identity as an athlete, friend, student, girlfriend, foodie, and artist. I am setting out on this journey to reclaim them, to gain from the pain.

Who's with me?