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Random Rants of a Lupie Lady
|Posted on August 23, 2012 at 8:01 AM||comments ()|
So I've finally decided to be a little more verbal about my life. As most of you know, I am living with multiple auto-immune illnesses among other things. Due to the fact that I have not been sleeping much, I've decided to start typing out my thoughts here. With that being said...Welcome to the land of Painsomnia. I am your President. LOL What is Painsomnia? Painsomnia is that place where you are utterly exhausted, perhaps even overly tired, but too tired to fall asleep because you are in far too much pain to relax. Nice right?
Well I've decided to occupy my time NOT staring at the ceiling. I've practiced more hours today than I probably should have, and playing games on the computer are just not that appealing to me right now...neither is the TV. I am listening to some really good music though. Be sure to check out the New Urban Jazz radio station. With their ON-Demand feature, you can listen to good music at your leisure. www.newurbanjazz.com
Now how about a little introduction not currently in my Bio. I have decided to NOT call health challenges illnesses anymore. I am calling them colors. That's right colors of a rainbow. I view it that way because when you are living your life with a chronic illness, you feel like you are in a constant storm of pain and often despair. However, after every storm, the Sun peaks out with a huge smile and a rainbow appears, letting you know that the wheels of time are still turning in your favor and you have defeated the challenges of another day.
Let me tell you about the unique colors in my rainbow...
My name is JoAnna, but I am affectionately known as "The Soul Stringer". I am a violinist and causal musician and I use my talent to not only encourage, but also to raise awareness about my very personal struggles with my health.
I have been currently diagnosed with the following labels...
Systemic Lupus Erythematosus (SLE), and Sjogren’s Syndrome, which are both auto-immune diseases that affect the body’s ability to distinguish healthy tissue and cells from foreign invaders. These illnesses cause a decreased function of the moisture producing glands in the body, arthritis, widespread joint and muscle pain and can cause damage to any organ in the body namely the brain, heart, kidneys, liver and skin. I also have chronic Fibromyalgia, which is also categorized as having widespread pain and debilitating fatigue and can cause death. In addition, I suffer with a rare Non-Hodgkin’s Lymphoma called Cutaneous T-Cell Lymphoma (CTCL). This is a type of cancer affecting the lymphocytes, which coincides with the immune system. Along with these major illnesses, I have several co-morbidities that include chronic migraines, neuropathy, hypoglycemia, inflammation in and throughout the gastrointestinal system, Reynauds, and Biliary Cirrhosis of the Liver caused by auto-immune disease. Is that enough for you for now????? Sheesh!
I will be back to explain and talk about things as I think of them. I will also share my writings from time to time. If you have any questions...JUST ASK!!! Nothing is off limits!
Tired of typing soooooo.....gentle hugs to everyone!!!!