Lemons

You're Invited To: A Pathetic Pity Party
When: Now
Where: Here
RSVP Not Required
Comments kicking me in the butt are more than welcome

I am by no means Pollyanna and I am quite thankful for that because really, when I watched that movie even as a child I wanted nothing more than to find a well to push her into over and over again until she muttered a bad word. No one can possibly be so freakin' happy and cheerful about every single thing in their life all the time and be sane. Or at least survive long without someone finding the above mentioned well and dunking them. But I don't think I fall on the opposite end of the spectrum either where I let every issue and difference be a giant weight that I carry around with me and announce to the world as the town crier, bemoaning the injustices of life. I am somewhere in the middle, most of the time able to just take up whatever has been given to me and go forth into life annoyingly thankful to have been given another day that defies all statistics. However, there are days like today where I become overwhelmingly frustrated with the little things. Rarely is it the big things that cause me to hang up the decorations for an all out pity party (those mental decorations by the way are some black crepe paper, some wilted flowers, and chipped china place settings that don't match). Instead is is the little things that add up and cause an overwhelming sense of frustration. I can deal with the fact that I have a malfunction in my immune system that causes my blood to clot improperly and thus led to my oh-so-fun blood clots in my arm and stroke experience. What is driving me nuts is the inability of any doctor to get the level of my rat poison - err coumadin correct and the weekly scheduling negoation required to get my blood drawn. Unfortunately since I work full time I can not come in at 11:45 am or 1:10pm to get my blood drawn, instead it needs to be at the end of the work day when I can scoot in after home visits or slide out just before the busses show up. How many other 26 year olds have a steady date with the phlebotomist and no dates with guys? I can handle the fact that it takes a small village of chemists to keep me alive, and I don't mind too much swallowing more pills than an gereatric wing of a hospital each day. The issue is watching my hard earned money be eaten up to buy those chemical concoctions and to find out that even tough my insurance has a cap on out of pocket expenses, medication copays do not count. So even though I have way surpassed that cap with copays it is meaningless because they don't count towards that limit. To the CEO of the insurance company I would like to extend an invitation to spend a month in my shoes, in the shoes of any individual with chronic serious illnesses who are working incredibly hard and barely making it because you refuse to cover necessary services or place such high copays on items that we can not afford to get the care we need. I have insurance, and without it I would be screwed, but with it I am just making it. Frustrated. And then there is the mourning of things lost to these dratted illnesses. I hate losing at anything - board games, bets, competitions of any shape and size. I detest losing to these malfunctions of my body and having to surrender even an inch. So having to let go of things that I once loved is a very sore point and a huge frustration. Music is my escape, my haven, my strength and my joy in so many ways. There is one country band - Sugarland- that is my absolute favorite music ever. I have worn out CDs listening to their music. Theirs is the only CD I have in my car and I can sing ever word to every song on their two CDs. They will be in concert about 1 hours from my house next month and I can not go. Money is not the issue (well money is always an issue but it would be pair for if I could go). The issue is that the dysautonomia has stoled this from me. I can not go to concerts, to the theater to see musicals, or to any setting that is likely to be loud, crowded, have lights that flash on and off, that may be off from standard temperature (colder or warmer than normal), or that uses bright lights in a dark setting. I will "crash" - my blood pressure will drop, I will experience what can only be described as a migraine to the third power, I will become incredibly dizzy and light-headed, I will become indescribably nauseaous, I will often have difficulty with vision and balance and the ability to coordinate my own movement, and I will experience changes in my heart rate and rhythm. Fun! Movies viewed in movie theaters are starting to have the same effect and I predict that soon they too will be surrendered. Family gatherings where there is a lot of noise, it is crowded, there is louder music playing, it is warm, people are constantly moving around, there are bright lights, and it is stressful (families are stressful) also cause the same reactions. I am oh so popular with my family for this. I no longer attend most family events, and not just because for years I was the family failure. I have never been inside of a bar or club of any sort because the loud music, lights, crowded atmosphere seems like a recipe for disaster. Even if I were willing to brave the crash, there is the issue of the narcolepsy. My medication allows me to experience life somewhere in the realm of normal living-and-breathing humanity but it has a time limit. Usually by about 8:00pm I am starting to wear down. Yes, my social life is nearly invisible because I have the same sleep schedule as my three year olds. I can push and stay awake later but then I pay for it. Repeat the crash scene above, either after pushing it for a while or in a milder form the entire next day. So I have surrendered my ability to enjoy concerts and movies, family gatherings, my social life, money, and endless time to these malfunctions that I have no control over and that pisses me off. I hate losing. I hate giving in. I hate surrendering. I hate being different. Well, if that isn't something straight out of my middle school journal! Wow, I sure have come a long way in 13 years (rolling eyes). Okay, so now that I have ranted, raved and had a pity party (anyone want another cup of lemon juice? Sorry I didn't make it into lemonade this time.) it is time to kick myself in the pants and snap out of it. I have ten little ones that are expecting a teacher with a wide open heart and excitement about life tomorrow, and I can not give them anything less. I thank God for them, because they truly are my joy and my grace. And I promise that the next time the lemons won't be so bitter - I may suck at making lemonade but perhaps I will make lemon poppy seed muffins or something else. Lemonade is so overrated anyway.

* It is very hard to remain frustrated and upset when your iTunes player randomly starts playing Put Your Finger In The Air (folk music style) because you forgot to separate the music for the Circle Time CD from your own music. And to follow it? Little Bunny Foo Foo. :)