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. 

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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

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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?

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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.

Struggling

I'm sure those of you who live with chronic pain can sympathize with me when I say that the last few days have been hard. I am struggling to get back on my feet and acclimate to my life as it is right now.

This picture is a tough pill to swallow. Right now I don't even see a path. I'm trying so so hard not to give up that it hurts me. I can't wait to achieve something that I want.

I am at my wit's end as far as treatment options. I have tried: Sports Medicine, Physical Therapy, Homeopathy, Chiropractic, and have dabbled in medications. I have found that I react badly to just about everything I ingest. I took a painkiller for my CPS one time and ended up gaining 10-15 pounds in just one week! Benadryl makes me irrational and moody and one ibuprofen gives me a brain fog. Therefore I have not tried many meds. In that sense I am not the average CP patient, but I don't consider myself an average anything.

Right now I'm backed up against the wall of the failures of previous treatments and I need to figure out which direction to turn from here. I cannot live like this, with this severe of pain permeating every moment of every day...not if I want to thrive anyway.

I've spent the night researching treatment options. I'm thinking of looking into Ketamine infusion therapy. From what I can tell, there are not the side effects that go along with 'normal medications' which makes me think that I might be able to actually tolerate it. Does anyone have experience with this treatment?

If I could I would ask my doctor, but I don't have one other than my (rather snarky) family medicine/general practitioner. I'm usually ok with this fact because I have never found any doctors to "team up" with. This seems to be an important part of CP treatment and I am envious of anyone who has this.

And after that semi-motivational graphic I am ready to move on to other topics, cheerier topics!

I am working on a painting. I have found that art and the creative process in general has been really helpful for me in my pain management/coping. I am now confident enough to admit that I quilt. I have been doing this grandmotherly activity since the tender age of 11 and still continue to do so. I will post some pictures of my work if anyone is interested in seeing them, I'm quite proud of a few of my larger pieces.
Anyways, I was talking about my painting. I got art supplies for my birthday and am enjoying using them. I find that I need an emotional release more than once a day. Right now my social options are severely limited so I tend so make up for the loss by self-soothing with art. Basically this paragraph is a lead-up to a teaser saying that I will post a picture when I am done with my painting.

Sorry about the lack of thought question today! I'm going to post one first thing tomorrow, I promise.

TGIF my fellow Gainers, keep moving forward!

Rachael Ann

Acceptance

I tried over and over to start this post. I tried so many times that I somehow felt I had to make up for it by posting the above picture of a palm tree from an old vacation. 

I really want to just lay out my entire past, present and future in one post. But, I quickly realized:

#1) There is pretty much no one reading this other than me right now. 

#2) Even if there were a bajillion people, there would be almost no one (save for my mom) who would be willing to read through 500 pages worth of sentences starting with "And then..."

So, dear gainers, I am pulling a picture every day from this site and using it to jumpstart my electronic monologue. (which, when comments begin to flow, will become a conversation!)

Here goes:

What could be a better starting point for this blog, this year, this journey of gains that I am on? Just about nothing. =]

So, to answer the question..

In 12 months I hope to be attending college once again. I realize that it's a long and possibly difficult road to get me to that point. Like the question says, there will be a lot of striving to attain my wants/needs. There's no cakewalk for me. Every day will be a battle but I am ready to fight. 

One thing I NEED to do in the next 12 months is accept my condition to the point where I can relate to others well. Yes, that is a complicated thought isn't it? Let me explain a little. 

I have always been a fighter. When someone tells me I can't do something, you'd better believe that I'm going to go bust my ass to prove them wrong. I want to prove myself, to a fault. 

Acceptance has been really close to, if not the hardest part of my chronic pain syndrome. How, as a 16 year old, am I supposed to accept that I will probably never take another running step. As a 17 year old, that I will have the aching back of a senior citizen for the rest of my life. How about accepting as an 18 year old that I will most likely never be able to eat junk food, dairy, sugar, or bread? It's not something that is easy to do. 

In the past month I spent a lot of time as well trying to accept my future. The prognosis is non-existent. No doctor has ever been able to tell me what they think is actually going to happen with me, they just don't know. So, it's up to me to accept the fact that my future may look just like my past. There *may* be a string of new losses stretching into my future. There also may not, and I would welcome that possibility with open arms, However, I deserve to have self-talk that is based upon reality.Reality is that until (God willing) my condition goes away or into remission, my future will most likely be like my past.

I need to keep allowing myself to accept my present situation. It is hard to wake up in the morning and not be able to do the things that I want, but it could be worse! I also need to be able to take that level of acceptance and give it to others. Not only do I need to work on accepting as they are, I need to allow people to accept me as I am. I isolate myself socially and also speak as though my condition is temporary. I need to shift my thinking so that where I am right now is just fine.

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I WANT to have a level of health in the next year. I want to be able to walk and exercise my body. I am not expecting to be able to work out 5 or more hours a day again. I'm talking about being able to do 10-20 pushups and situps and then hike a mile. The thing is, I want this to be a normal occurrence and not something that happens once a year. Also I want to have my eating habits improve. I eat a High-Raw semi-vegan diet. (more info to come). This helps to decrease pain spikes but I know that I have not completely finished finding problems with my diet. 

This is me, not exactly looking forward to accepting! 

Just kidding, I honestly cannot wait to see what the next year holds for me (and you!). 

How about you? What are your want and need for the next year?

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?