Yes, I Am Still Alive

I am still here. Just hanging out waiting to find out what is wrong with me. When last you heard from me I was waiting for blood tests. Those blood tests had my primary doctor thinking I had an active virus and was contagious. She referred me to Infectious Diseases where I met the worst doctor yet. After he made me cry, he agreed to run the blood tests that he wasn't going to run because there weren't any treatments for the viruses, so he figured it didn't matter.

As it turns out, he was wrong. Those tests revealed that I did not have an active virus. Now it is back to the doctors office. Except this time I think Chronic mono can be ruled out and it is now narrowed down to Chronic Fatigue and Fibromyalgia. (Go Chronic Fatigue! It may take years to recover from, but at least you recover.) In the mean time, I still haven't had my disability reinstated. Apparently the paperwork they send to the doctor is virtually impossible to fill out. When the insurance company called, I politely explained this to them. I then told them I had been referred to occupational medicine for a full evaluation because my doctor wanted the paperwork filled out correctly. The agent immediately told me that wasn't necessary I could simply have my doctor submit a letter stating that I had been limited to part time work. This seemed unusual and after talking to the manager of my primary doctor's office, I found out why.

She told me that the evaluation would require a specialized office that had some machines they could hook me up to to fill out the paperwork correctly. She also told me it appeared the insurance company was making it as difficult as possible for me to follow through with my claim. She also said that I probably scared the insurance rep because if I actually get evaluated by occupational medicine, I will be given a disability rating. The insurance company may then be required to pay me for the rest of my life based on that little number.

I suddenly feel that it is important that the insurance paperwork be filled out correctly. I have no desire to be on disability for the rest of my life. I simply have a desire to pay my mortgage while I am unable to work. Is that so wrong? I didn't think so.

Needless to say, things around here are basically just getting through each day with the minimal of frustration. Luckily I have never been an active person and have always loved video games. Plus, I just got reading glasses, so I am finally able to read printed material again, so I am on my 3rd book in as many weeks. And I finally finished the book I have been working on since I got sick. Yay me! My prescription didn't change, I have always had a slight astigmatism, but have always been able to compensate. Apparently, I am so tired, my eye muscles don't even want to do that much.

I am not editing this you can read it as is, so take THAT! I will try to remember to update this with any news that may come up. However as you can see in this email, I really didn't have anything new to report.

Except the glasses. They are cute and I have always wanted glasses but never really needed them. So I guess that's new.

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.

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.

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.

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?

Without Reson or Explaination, She Returns

Howdy ho neighbors. Here is an update for the few of you out there who are still checking my blog. My mom came for a week and a half. We cleaned out my place, it looks awesome. Thanks mom! Then we decided that she hadn't been here long enough so we bought her another ticket and she stayed another week.

I cried for about 24 hours after she left. I didn't realize how lonely the last seven months have been until she was gone. Then came a rash of crappy news.

1. I have finally crossed the time limit at work and while they are continuing to employ me, I will have to switch to Cobra. This means another $500 a month that I don't have.

2. Went to the doctor a couple of weeks ago and he told me I just need to be patient and get through this mono thing and then life will be back to normal.

3. My disability claim went through. However, they can only pay me through last Thursday because my doctor informed them that I was fine to go back to work full time.

???????????!!!!!!!!!!!!

Um, well, I am glad I called to check on my disability otherwise I wouldn't have known I was suppose to be at work. It's funny how he never mentioned that to me during my exam. WHAT THE CRAP? So basically, he hasn't done anything for me but tell me to rest and I will get better. Oh, and cancel any means of income I might possibly have. What a guy. I can't even fathom what is going on in his head, or what he expects me to do. I mean does he think I am lying about not feeling good? Cuz if so, I think I would have to be pretty stupid to be relying on mono. Especially since they can do blood tests to determine if it is true.

The funny thing is that the insurance company believes I am sick. They specifically told me that they will pay me up until the day they talked to my doctor, but because I don't have a doctor telling me I can't work, there is nothing more they can do. If I do get a doctor to say it, then they can reverse the decision.

So my employer knows I am sick and has been holding my job for seven months. My mom knows I am sick and waited on me hand and foot while I was whiny and grouchy. And my insurance company knows I am sick and wants to pay me. But my doctor, who can physically see my symptoms has decided I am not sick.

My life is so weird right now. It's like a bad movie that I can't turn off. Who has this kind of crap happen to them? Who comes down with mono for seven months? Who gets diagnosed by a doctor who just decides you are better without an exam or testing? Does he have a magic wand? Because it isn't working.

Anyway, I have included for your viewing pleasure a copy of the letter I will be sending him. Seriously, what did he think was going to happen? I can't go to work and I can't pay my bills. I haven't had any income this whole time. Did he really think I was going to shrug and say, "Oh well."

The good news is I am getting a check for 60% of my salary from March 22nd to June 17th. So that should at least hold me over. However, since I am already supposed to be better, I am not sure how long that money is supposed to last.

Dr. Jackass,

I would like to voice my utter disappointment with your lack of care. When you diagnosed me with mono in January, you told me rest was the only treatment and I should be better in a couple of weeks. You admitted later that you were incorrect and it was taking longer than anticipated for me to recover.

When my office initially contacted you with FMLA paperwork, you completed it saying I would be able to return to work in two weeks. When I was not better in two weeks, my office asked you to update your prognosis. Instead of giving them an answer, your office called me to ask when I thought I would feel better. When I panicked at the idea that my doctor was simply guessing at my recovery time, you had me come in for a five minute exam. You said I could go back to work in two weeks. At your direction I attempted to go back to work. I pushed through the pain and the fatigue for two days. On the third day, I could not get out of bed and felt worse than I had my entire illness.

When you were contacted with the long term disability insurance, there was no exam or further testing. You simply signed off on the paperwork. When I came into your office for a check-up a month later, you did not tell me when I would recover, but that I would have to be patient and wait. You did a basic examination, but no further testing on what might be causing such an extended recovery.

Two weeks later, without examining me, you arbitrarily decided that I was cleared for work. You informed my disability insurance company without notifying me. Yet again, you assumed that two weeks had passed so I must be healed. I have lost six months of my life because you don’t know how to deal with my illness. You have betrayed my trust. If you couldn’t or wouldn’t help me, you should have told me that from the beginning. I could have found a doctor who would try to help me get my health and life back. You did nothing. I had told you I had been feeling sick since last September. I have had a sore throat and been fatigued for ten months. Ten months of my life are gone. Six months were your responsibility. You failed me and then, because you couldn’t exert yourself to do any more, you cut off my disability insurance without a word or an exam. I don’t know how you can possibly explain that. But I expect you to try.

It is unacceptable and unethical to deny disability without testing or examination, while refusing to treat a patient in order that they may return to work. You have left me in a very vulnerable position and I will not tolerate any further dismissive behavior on your part. Please be aware that I will find a resolution to this. If need be, I will take this issue to Cigna for mediation. I am sorry that it has come to this, but you have left me with no other alternative.

Sincerely Yours,

J

PS, Seeing as how you are a true believer in magic, may I please have a lock of your hair for my voodoo doll? Don't worry, after I stick the doll, I'll tell it to feel fine. So there is nothing for you to fear.