Am I whining?

Often I feel like I am, whining that is. I am not dieing. I am being supported by my parents. I do not have a job or kids - no real obligations to speak of. Boredom and fatigue are the only two things I can really complain of. And those will not kill you. Sometimes I feel like I need to tell myself to shut the hell up.

You are not dieing. You are just taking medications and honestly, so is everybody else.

I was called "a catch"

I got offered a job doing experiential education with 4th -12th graders out in california. They called me "a catch" and said they would be honored if I went to work for them. It would have been a perfect job for me 4 years ago - but it you start teaching at 9am and teach until 9pm.

I can't do that. There is no way my immune system would survive. So I am looking for a plan C. And I have to tell this nice company and nice man that I can't work there because I am too sick. I'm not so much angry but honestly, just sad.

...where credit is due.

At anyrate – even with the C-line I still want to sream GIVE ME SOME CREDIT. Not everyone can be as gracious as Tuesdays with Morrie and this disease is rocking me flat and I ain’t happy. So don’t pretend I have to be. And for godsake don’t offer stupid advice like “breathe deep”, “make sure you get plenty of rest” or “my neighbors son had lymes, he took antibiotics for 3weeks and was fine. You should try that.” Or give me articles on how to combat fatigue. I am trying and doing everything I can. AND I AM STAYING OPTIMISTIC so shut the hell up.

Seriously, just acknowledge the pain. Don’t tell me to be tough, I am. Don’t tell me how to fix it, I know more than you. And don’t tell me it will get better – there is a chance it won’t. Just be honest: tell me it sucks, tell me you are there if I need to talk and tell me something funny. Jokes are okay, serious advice is not.

Over and Out.

Who are Larry and Sly?

Larry and Sly, as per the title, are my tubes. They are also flamboyantly gay lovers. I needed a little happiness on my chest and didn’t want another female to be jealous of. Those boys are my hickman central line.

I don’t mind the Hickman – I even secretly like it. It entitles me to credit. Without any physical manifestations of my disease, having tubes coming out of my chest forces people to see how serious it is. I guess a picture is worth a 1000 words or whatever. Maybe human nature is to be attracted to physical aliments rather than verbal descriptions of pain.

Discuss.

Lymes Petition! Sign it!

To anyone who is reading this: Sign this petition. The ISDA is trying to curtail how to diagnose lymes and how to treat it. Mostly it would end my current treatment and any hope of further treatment and sentence me (and all the other lymies out there) to a life of pain.

Go to: http://www.lymediseaseassociation.org/

And click on the petition.

Grieving for what?

I find that the hardest part about being sick is that I am often grieving. I imagine it must be the hardest part about having cancer too. You are battling with a disease that is going to alter your life (in my case) or possibly end your life (in the case of some cancer patients). But the problem lies in the unknown. I don't know if the intravenous treatment is going to work - if I am going to go back to 100% or if I am going to be sick for the rest of my life. Part of me grieves for the possible loss, but then immediately feels guilty because I haven't actually lost anything yet.

It would be so much easier if there was a definitive answer. 2 months more or 15 years more. Having a concrete time frame allows you to adjust your emotions, expectations and lifestyle. The key to a happy life is expectations. Mismanaged expectations lead to anger, disappointment, guilt, pain... expectations to be healthy, expectations that your love will be returned, expectations that you will be happy post-graduation.

Not that you shouldn't have high expectations, you should. It's just that hope is a dangerous thing - because each time you get burned makes it harder to fight again.

I just thought I had turned a corner, gotten a bit better. Then over the past 2 days I've spent 5 or 6 hours in bed... not really the stunning comeback I had imagined. My only answer was tears (in the Tower Records parking lot). I want so desperately to be well.

Ah yes, why marbles?

A dear friend told me once that everyone is like a marble in a bowl. As the bowl tips and turns, the marble can end up on the edge, at the very bottom or sometimes it just cruises the sides. But at the end of the day, once it's all said and done, the marble will come back to the bottom of the bowl.

I can't think of a more true analogy. There is an essence to everyone, a baseline existence or personality. People travel, marry, grieve but in time, the bowl settles and the marble comes back to the bottom.

I firmly believe that people don't change, they just mellow. But as I fight this disease I find myself wondering if I am not somehow fundamentally different. I worry that my essence, my optimism, my fight is somehow going to be squeezed out. I have already given up so many activities and dreams, but to give up part of myself... it seems to much to ask. This disease is an affront to my very basic beliefs. My marble is somehow out of the bowl.

It begins

I used to keep my door open. I did my homework in the kitchen as a kid and studied in coffee shops in college. I love public transportation. Recently it's been too much work. It's tiring to navigate public spaces, to let myself be apart of it. Secretly, I feel like too much of a burden to be out and about. Like the little old ladies that drive 20mph in the 25 zone. People around me operate at 35mph, and I at 15. And it's too hard to explain why. And it's too hard to brave the inconsiderate remarks. Too hard to tolerate the pity. So. I close the door.

That sounds depressing. It's not supposed to be. It's just the way it is sometimes.