Sunday, April 11, 2010

Paying the Price

I have always loved spring. When I was a little girl I remember enjoying the sun and the pretty pink trees in bloom and the yellow flowers that danced along the open fields near my childhood home. I was a sickly child. I would struggle with pneumonia, bronchitis, urinary tract infections, kidney & bladder infections continuously. Somehow, it was normal for me to be sick. As I grew up and left beautiful Oregon and traveled overseas, back east, and now back again, I have always been sick. It didn't matter where I lived it seemed that sickness followed me like a grey storm cloud. Close friends of ours and I would make jokes that when I died my epitaph would read..."I Told You I Was Sick". It was always a joke, because we never really thought that it was serious. Now that it is serious, somehow the joke isn't funny anymore and we no longer share that joke. When I die, I will be sick and I don't want to have to convince anyone that I am. I am trying not to make jokes about it. It isn't funny anymore. Times have changed; I have grown up; I am sick. This is hard, so hard to accept. The weather yesterday was beautiful, so I took advantage of the day to go shopping and to the movies with my family. Everything has started to bloom. The trees are fluttering with pink blossoms and again the yellow flowers dance through the fields. I am a sickly adult. I still struggle with the same childhood illnesses and now I am struggling with them as an adult. I am back in beautiful Oregon where there is a cost on me for the beauty. The same flowers and trees that made me sick as a child still do so today, but now the sun is an added culprit to my system in constant turmoil. The cost of getting out of the house yesterday is a price that my body just couldn't afford. In driving across town and around town for at most 30 minutes, caused an increase in fever, sunburn, rash on my arms, face, and chest. My rash is in a flare from that short amount of time. Everything that I do now has a price to be paid. Is it worth the price of a rash to go outside and enjoy spring time? Is it worth the physical price to walk the dog for 15 minutes? Is it worth the price to be sad? Yes, there is even a price on sadness. For everything that I do now, it will cost me physically to do them. Today I feel that the price I pay for everything that I do is worth the cost to my body. I will pay the toll to enjoy the day with my family. I will pay the toll to enjoy the sunshine. I will pay the toll to enjoy the flowers and trees in bloom. I will not pay the toll for giving up and becoming a recluse. I have a life to live and I have a family that I want to live it with. I refuse to pay the price to Lupus or any other disease that has found a host in me. I will live my life to it's fullest no matter the cost...I have too much to lose.

1 comment:

Jessica said...

Hi! I found your blog looking for information on lupus, specifically the butterfly rash. I'm so sorry that this is all hitting you right now. I am currently diagnosed with fibromyalgia, psoriasis, various mood disorders, interstitial cystitis (ulcerative form), endometriosis, and chronic kidney infections. I have an undiagnosed breathing problem (since I was young), and it seems that I have an undiagnosed thyroid condition, and lupus, RA, MS, and Sjogren's have been mentioned as possibilities. I don't have insurance, and I live in an area notorious for not listening to their female patients, so I'm stuck. I just wanted to reach out, as you have, and let you know that someone cares. A lot of your story sounds like mine. I hope that this finds you well, or at least as well as can be expected. Many hugs!