Today I painted my toe nails purple. I know to some reading this that may not seem like such a big deal. I know that on my “good” days, it isn’t a big deal for me either. Yet, recently I have found myself stuck in this body that simply does not match my soul.

My heart and my soul are very much that of a woman, a child even, who wants to constantly run and jump and play. When I see the first snow fall, my first impulse is to run into the untouched layers covering my yard while the moon shines down and make snow angels. No coat, no boots, just wearing my pajamas. On hot summer days I am eager to hook up the sprinkler for my son.   I can’t wait to join him while we both squeal when that ice-cold water splashes against my skin taking away my breath for just a second.

I want to jump on the trampoline and play laser tag but get caught every time because they can hear my giggle. I want to go zip lining and go down water slides until the sun melts into the earth. Ski, and surf, jump out of planes, and climb mountains. You see my heart and soul have not accepted my Lupus diagnosis. My body knows what limitations I have, it is the rest of me that will not get on board. I do not blame them one bit.

So, what is a girl to do? There was a time, not so long ago that I had given up. I was not yet forty years old and I was crawling on my hands and knees to the bathroom.  The weight of my own body was simply too much for my swollen joints to handle. Doctors did not understand. Family did not understand. Hell, I didn’t even understand. I had never felt so alone in my whole life. I was told that this was it for me. My doctor actually said, “What part about chronic pain don’t you get, this is your life from now on.” I fired him.

I saw days float past me like wispy clouds on a hazy day. One simply blended into the next with no real meaning. The entire purpose of each day was to control pain without losing my mind. I closed my eyes one night and vividly remember thinking, there has to be a better way.

It has been almost ten years since I fired that doctor and educated myself on chronic pain and lupus. New doctors, a new way of life and a completely different way of thinking. I am not ashamed of my diagnosis. I am not embarrassed to admit that I am tired and need to rest. I no longer worry about being judged by others. I stopped feeling the need to explain my illness every time a person accuses me of being lazy. My life has improved in more ways than I could ever fit into one blog, but the two best things I did for myself were this. Diminish the stress and find peace. Was it easy? One of the most difficult things I ever did, but the most rewarding. It has taken time, patience, perseverance and so much energy. Thankfully I was able to muster up enough of all of those things when I needed to because I believed I was worth it.

Do I still have pain, yes. The key now is knowing how to manage it, and knowing my own limitations. You see, when your soul wants to do all the things your heart is screaming to do, the instinct is to do it. Jump, run, play and deal with the consequence later. When dealing with chronic pain, you quickly learn that is not an option. You either pace yourself and learn to listen to your body or your consequence can be organ failure, hospitalization, or pain you simply cannot wrap your brain around. So, now I save up my energy and plan. Rest when I need to without explanation to anyone. I make what I eat count on days when I find it difficult to eat at all. I take the vitamins my doctor advises. I constantly educate myself.  Let’s face it, nobody has to answer to this body but me.

To all of you out there dealing with any illness at all, I too miss the old me. I have grieved the days when I did not have to think about pain management, blood tests and doctors appointments. I have had to move away from that and into being grateful for the life I do have. I am happy for the moments I can share with those I love. I will take each and every one of them I can get.

Much love. ❤