The Calm After the Storm...

"Worry does not empty tomorrow of its sorrow; it empties today of its strength." Corrie Ten Boom

I've been struggling a bit the past couple of days. Not physically...only emotionally. Worry and anxiety have crept in and they are making themselves cozy. I first noticed the itch of anxiety a few days ago when I looked at my fingers. I don't bite my nails, but I chew the hell out of my cuticles. My fingernails look lovely, but they are attached to bloody stumps. I have chewed my fingers raw. I ONLY do this when I'm anxious, but I don't have time to focus on the problem and improve my thought process.

Post-Traumatic Stress Disorder...it's not just for soldiers. I'm not saying that I have PTSD in its true form...it is a very serious condition. However, I think there is something to be said about the stress and anxiety that can arise after the storm settles. I used to see this all the time when working one-on-one with oncology patients. A while after treatment has concluded and the craziness settles, the patient is left feeling abandoned and alone with their thoughts. The questions start... "Did we do enough?" "Does that ache mean I've relapsed?" "What are the long-term consequences of the the treatment I received?" "What if this comes back?" "What's next?".

Then there is the searching... Google is not my friend. I have been off of IV's for a month now. These types of questions have started filling all the little nooks and crannies of my brain. Whenever I have a question I google it. I have been looking up my symptoms, comparing my case to the cases of others, I have been searching out statistics...basically, I just want answers. I want answers where answers don't exist. Mostly what I find is more cause for concern.

Last night I stumbled across the website for an organization that's sole focus is conducting research and raising awareness for non-tuberculosis mycobacterium (NTM). I was impressed, since I now possess two strains of NTM. The very first thing I read on the home page of the site was that "NTM is a devastating chronic illness". I don't know why this statement has been suck in my head since I read it. I think I was under the impression that the m. abscessus and MAC were symptoms of my CF...just a little bump in my CF road. That statement made me feel like this is an entirely different deadly condition. I already have a "devastating chronic illness" with my CF. All of a sudden I feel like I have double the burden.

I think I was blindsided last night by the seriousness of what I went through over the last 6 months of 2010. I spent a lot of time and energy trying to convince myself and others that this was no big deal. Last night, when I found an entire organization devoted to the bacteria that has infected my body it was a reality check that this is serious business. The founder of this organization has been living with NTM for 15 years and this is seen as a huge success. Does that mean most people succumb more quickly? I am thrilled that this organization exists, yet it makes it all the more real for me. Deep down I knew that mycobacterium was a big deal...I guess my searching just provided absolute confirmation.

So, what am I doing about it? I am scheduling a consult with the CF/mycobacterium guru at the National Institute of Health (NIH) in Bethesda, Maryland. He is an infectious disease physician who is one of the leading minds in the impact of mycobacterium in CF patients. This was Dr. Dazzle's suggestion. I have so many questions to ask...mostly about my future...mostly questions that have no answers... Maybe if I ask enough people, eventually someone will give me the answers that I want to hear. I see scheduling this consult as being proactive. If these bugs come back and become resistant, I want to know the plan. It gives me a sense that I have some control over this/these diseases. My records are being sent to NIH, there will be a meeting about my case, then they will call and tell me when to head to Maryland to be seen in person.

I know without a shadow of a doubt that I need to keep things in perceptive. Corrie Ten Boom survived the Holocaust. Comparatively, I am blessed beyond measure. I know this and I live this...but constant reminders don't hurt. I have been enjoying my "health", my family, my job. Life is getting back to normal...whatever normal means for a CFer. Life is truly grand! If I could only eliminate this worry for good...if I could stop waiting for the other shoe to drop...then things would be golden...