Wednesday, July 21, 2010

My New Motto

Life isn't about waiting for the storm to pass.
It's about learning to dance in the rain.

I decided this week to stop waiting for my life to go back to normal. I have been in this holding pattern for months. Now I have answers and it is time to put a new life together. It may go back to what it was, but I can't keep waiting on that. It is time to pursue new paths and live in the moment, not the future.

Saturday, July 17, 2010

Lemon Juice

Helping find those little cuts you just don't know are there.

Legion of Infectious Diseased

One of my lovely friends told me that my illness is probably just the catalyst for my super powers and that I need to ask about it when the Legion of Infectious Diseases contacts me via my doctor referral. I have absolutely decided to use my powers for anarchy. Pretty much because I have been given the roller derby name that is awesome and won't work for good. Just call me Contagion. Those who know me might find a different spelling option.

The doctor visit went well. I really liked her. She didn't even give me a physical examination. It sounds weird for that to be a good thing but for me it meant she believed me when I told her what my symptoms were. That and she is so awesome, she had it figured out in about 15 minutes. She thought it was still Mono. If the tests came back negative, it was probably Fibromyalgia or Chronic Fatigue Syndrome (CFS). Then she ran all kinds of tests on me because in order to diagnose the two latter illness, you have to rule everything out.

She called me this week with the results and asked if I had time to talk. That should have been a warning to me. She said not only do I still have Mono, but the antibody counts are actually higher than they were in January which makes me a Carrier. It also sounds like an awesome origin for a Super Being. Because this is outside of her experience and knowledge base, she had to refer me to Infectious Diseases. They would contact me and be able to tell me if this was Chronic or I will be a Carrier for the rest of my life.

Let me explain Chronic and Carrier. Chronic means that the Mono will go into remission and I will be subjected to random relapses for up to 16 years. Carrier means that I always exhibit symptoms and I am always contagious. Hence the roller derby name. Now God love everybody who says that this is a relief and at least I don't have Fibromyalgia or Chronic Fatigue Syndrome. While I appreciate the sentiment because they know someone with these diseases and are relieved that I don't have to go through this mess, I am wondering why I am seeing it differently.

Did they all miss the phrase "for the rest of my life?" Fibromyalgia and Chronic Fatigue Syndrome can be treated. They know people who's lives are not easy, but they have lives. If I am a carrier, I will always exhibit symptoms, meaning I will always be sick. The only article I could find on this rarity basically said that some people just get stuck in this one phase of Mono. Even if I can somehow manage to find a way to suppress the symptoms and actually be on my feet for longer than two hours a day, I will still be contagious. Sure, it is only passed through saliva, but I am pretty sure that no company will employ someone who is a walking viral infection waiting to happen. The liability is just too great.

Don't misunderstand. I am not panicking or freaking out. I have this strange sense of peace. Maybe it's because I have been helpless to control my circumstances for almost eight months. I just figure whatever is going to happen is going to happen. I am not upset but I am not relieved or happy by any means. Although I am finding much humor in the situation. I heard the absolute best encouragement from my coworker yesterday who said, "Look at it this way. You're probably going to be forced to become a recluse and out of that you will become some great artist that everyone will just be in awe of." I think the reason this is the best thing I've heard is because she took in what was happening; looked at my future; and found the best possible outcome based on reality. (It doesn't hurt that my daydream response to this situation is to believe the exact same thing. In my version, I write the great American novel.)

It was grounding to have someone look at my life for what it is and still find something inspiring to say. I've begun to wonder if I am a cynic. I have never really thought about it before. I am usually all about finding silver linings and such that it never seemed possible that I could be. I think I am though. And I don't think it is a bad thing. I can look at what is before me without fear. I don't need to hope for my circumstances to change. I can't change what is going on. I can change me. I can adjust to my surroundings. But I can't do that and wish for things to change. What is the point of changing yourself if you are expecting you won't have to? These thoughts aren't really cynical in my opinion. I believe that is being a realist. I have always thought of myself as a realist.

What makes me think I am a cynic is the feeling I get when I talk to people who try to make me think that my circumstances are going to magically revert back to where they were. This feeling was not always there. I think I crossed a line about four months ago that turned me from realist to cynic. Something existential snapped and changed my innate reactions to people good intentions. I can't tell you what caused it, I only know that I have converted. My inner response is no longer a wistful longing to believe what the are saying.

My inner response is to picture me wearing big black boots and kicking them in the shins.

Tuesday, July 6, 2010

Back In The Saddle Again

OK, I am back from my visit to Hell. Whew, what a journey. As a summary of the latest events, I ran out of a few things that I had been taking regularly. (Astragalus, Vitamin D and Vitamin B) I kept deteriorating physically but because of everything that was going on, I thought it was due to stress. I reordered all my pills and am feeling much better now, thank you. Turns out that I am not so depressed when I am not in constant pain. Who knew?

I am off to a new doctor this Friday. Right now I am putting together a booklet of all my symptoms and medications/vitamins. I will also include copies of all of my blood work. Which shouldn't be hard since they only ran tests twice.

The bottom line is I am feeling much better. Well, I am back to not being laid out on the couch in pain. The timing is excellent. There really is a silver lining to everything. Because the stopping of treatments caused me to revert back to where I had been initially, I can see that I am not getting better. What I am learning to do is control my pain and fatigue.

A) I get to regain a small feeling of control in my life by taking care of myself.

B) I can go to my new doctor and say with confidence, I am not getting better, something is wrong. This is not mono.

Hopefully she will help me. My office friends have diagnosed me with Fibromyalgia. I have to disagree since I have all the symptoms EXCEPT the tender spots. That is the only symptom they use to diagnose. Typically a patient has to have 11/18 points. As far as I can tell I have 0/18. But there are plenty of other treatable things that it could be. I am purely elated at the idea that I might be able to go back to work. It just sucks that for the last 7 months, all I have been told is to stay in bed and rest when I could have been treated this whole time.

I don't understand how doctors can get away with this sort of thing. This guy's laziness and incompetence has cost me seven months of my life including loss of income. There should be something I can do to get compensated for his refusal to do his job. If it were any other type of business, he would be required to issue me a refund. Why are doctors so much above the rest of society? Maybe if they weren't and were held a bit more accountable, this never would have happened to me.

I hate being the little guy.

Saturday, July 3, 2010

How a Joke Is Born

Mom: Did you look up the symptoms for Chronic Fatigue Syndrome?

Me: I started to but I got tired.

Mom: Laughing hysterically.

Me: ???

Mom: Did you even hear yourself?