Monday, April 29, 2013

May is Lyme Awareness Month

Thanks for letting me rant yesterday
Back to the fight against Lyme and not people. Ok, well the CDC isn't people so we can still fight them for their recognition.  May is Lyme awareness month. The reason I was able to self diagnose a year ago. (Then it took almost 4 months to get a dx and 10 months to get a real dx with Lyme and Co's.) It seems strange. It is a year filled with hardship and suffering and I can barely recall the specifics. I write EVERYTHING down now. My apartment is filled with bright post-its and note pads, every piece of mail or important information has been carefully filed into its own manila folder. I still gasp with panic when I suddenly think I have lost something. Only this week have I been able to start trusting my systems. So carefully and not without error, they have been created. In my stage management life, I never double booked or lost important things. I had a binder for every show and a brightly colored divider (with a pocket on each side!) for each part of every show. Now I manage my illness. It's not terribly different. Except the whole this one sucks and no one wants to pay for tickets. The managing process is the same. Call the people, get the paperwork, fill it out, copy it, file away original and send the copy off in the hopes it will bring a helpful answer. It reminds me a bit of that movie "Memento" except I barely remember that movie. I last saw it as a freshman in college. I have phone alarms for meds. Meds sorted and labeled for each day, each dose. Now I always know if I have taken them. No overdoses or skipped doses. That, I think, must be the only reason I remember to eat. I have to eat will pill or they come painfully back up. 


It has been a year since I had a name for my enemy. A year since I had an inkling of the challenge I had ahead. Sometimes I still feel like I have no idea. I probably don't; I haven't started proper treatment yet. I am told after a few months in little things start to disappear. Little joints don't hurt as bad. Stairs become easier. I can handle the pain. I'm a pro at pain. I have refused pain killers for so long, not wanting to mask something important if an acute problem occurs. I am looking forward to remembering how I spend my day. Remembering friends' names. (Without cheating by checking on Facebook.) Applying for grad school and knowing I will be able to go. And working. Oh, how I cannot wait to work!

The reason I was able to identify what I had was in part due to Facebook status updates of a friend. She and I met 3 years before. She and I both had similar symptoms and similar, but not identical diagnosis. We had both been sick for as long as we could remember, but were trudging through determined to achieve our dreams. Each day she posted symptoms of Lyme. I had been in bed for 2 and a half weeks. On May 10th, I messaged her. "I think I have Lyme." Her response was so loving. She knew that I had it. She also knew that I was still holding on to the security blanket. I had my diagnoses. Neurocardiogenic Syncope. Veso-vegal Syncope. Postural Orthostatic Tachycardia Syndrome or POTS. Fibromyalgia. Chronic Fatigue (but not Syndrome because it had a known cause, the FM, and CFS isn't CFS when you know what causes it. All of these things are not diseases. They are symptoms of SOMETHING. It isn't always Lyme. Sometimes it's due to a chemical absorbed or breathed. Sometimes it's other bacterium. 

My goal for May: to continue my blog as often as possible. Though, with two days of traveling to the LLMD and treatment beginning, I might find it difficult. There are somewhere around 300 symptoms of Lyme. I will attempt to post 10 each day. I will notate which ones I have had, currently suffer from, and have  yet to or never experienced. Please, if you know someone who fits into any number of the sxs I post, have them watch "Under Our Skin". And as always I am here to answer questions. Even if that question comes in the form of the scared statement, "I think I have Lyme." There is so much information out there and so much wrong information. It takes some time to figure it all out. At the very least, it take someone pointing you in the correction direction. 

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