ps

I do think this is lame. Blogging seems self-glorifying. But I am doing it in self-preservation. I cannot answer honestly how I am doing to everyone that asks - it's too long and complicated.

So this blog is to answer my friend's questions, to let them into my mind and to allow them to see what I am really dealing with because I can't really tell you every time we talk and even if I do, I'm probably going to downplay the impending doom, the frustration and the change that I feel like is happening to me.

(love)(love)(love)

bensies with the mensies (and my heart problems)

Sometimes my heart beats so loud I can't hear what other people are saying. I can lie in bed and feel it in my arms, stomach, back and eyeballs. I used to have to leave class in college because I couldn't hear the professor. But this only happens now for a couple days around my menses.

For most women, their symptoms get worse around their period. Definitely true for me. Like today I woke up, went to the bathroom to brush my teeth and my heart rate went from 72 to over 90.... from walking to the bathroom. Now that gets tedious and annoying.

Despite systemic infections and racing heart rates, I am actually in pretty good spirits because usually my blood feels thick. Like I have the flu or mono - my whole body is tired. But recently, that has been disappearing. And I was expecting it to come back around my period because the fatigue usually gets intense - however this time it appears to be just my heart rate/volume.

This could mean good things for my future...

systemic infections and the like

Turns out my splurge on halloween candy is going to cost me. I got a systemic yeast infection - manifesting itself as diahrria and fevers. So I am currently off IV meds and headed to the hospital for a series of tests. 10 days off anti-biotics, which would be a nice break, except that it sets me back.

Ah, poop cultures... my favorite sort of test.

Who wants to play with the sick girl?

Being sick has created a new me. This new girl is emotionally needy, she cries a lot and feels alone. She isn't as fun and can't stay up late. She demands more and gives less. She can't clean her closet and practice guitar in the same day. She is self-centered and mean.

I don't want to accept her because I don't think she'll be around forever. But I feel terrible about inflicting her on others. No one wants to play with the sick girl, the sick girl is a burden. This is not self-pity, it's like a petite version of self-loathing. If I don't like who I am right now, how can I expect you to?

Things I miss - in no particular order

- candycorn
- hiking
- choice
- being able to multi-task
- frenchfries
- being able to show off my boobs
- taking long showers
- well, taking showers at all
- going for a run
- fruit smoothies
- normal bowel movements
- drinking
- Or the choice to drink
- sweating
- planning for a future that I know will happen
- swim practice
- frenchfries (again)
- catsup for that matter
- being an athlete
- being able to define myself how I want

And, again, the hardest part is not knowing whether I'll be able to get all these back. Am I going to be able to lead backpacking trips and travel to foreign countries? Or, am I going to have to somehow come to terms with just organizing them...?

An open letter to Erik

I feel like a burden on you. I know I have apologized for this before. But I can't help but feeling like I need to all the time. I am sorry that I cry, that I need you to call more often, that you have to hear me rant about the same stuff all the time. I am sorry to make our relationship more serious and sorry that I am not as fun as I used to be. I don't want you to be dating the sick girl. And I desparately want you to stay and take care of me, but I know that is totally unfair. Really, you should go. You didn't sign up for this, for any of this. I feel like I am forcing you to give more than you want to.

I apologize for breaking so easily. And I apologize for asking you to pick it up. Please tell me if this is too much. I will understand.

maria.

vodka, pints and 40s

I've dropped 20lbs in 2 months on my crazy diet... no sugars, yeast, carbs, or wheat. And I'm a vegetarian. Soups, salads and guac for the stash. that's about it.

When I get off these drugs I am having a vodka, pints and 40s party. Penne al vodka with vodka shots, 40s duct taped to one hand and a pint of ben and jerrys to the other. Get ready.

Do I even have a disease....

One of the toughest parts about lymes is that it doesn't really exist. There are many strains, eight or so co-infections and incredibly different manifestations of the bugs living in your body. My symptoms were extreme fatigue (in most lymes patients), confusion, emotional distress, crazy heart problems, night sweats, headaches, etc. I was first diagnosed with depression, then mono, then heart problems - I was going to be put on beta blockers and discussions were ensuing about a pace maker. But a year later, I was brought to a specialty clinic in Hyde Park, NY, the doc diagnosed me with lymes and instead of major cardiac surgery, I went on antibiotics and haven't really been off them since.

The hard part is that some people have never heard of lymes - there are doctors who don't even believe in it. The whole southern US doesn't know it exists and nobody really knows how to treat it. So, your left stuck. Often times symptoms present themselves as other diseases (there is research going on now about the correlation between lymes and ALS - as in lymes causes ALS... Interesting.). And I never had the "bullseye" and with no definitive diagnostic test, it's hard to be 100% sure. With little research being done and even less consensus on how to treat lymes - it leaves serious questions in my mind. And when you are fighting a disease you don't really believe in with a regimen that your not sure is going to work... it's exhausting and counter productive to the healing process. My mind needs to be fully engaged in getting better - right now, it's still lingering on the edges of doubt. Is intravenous the answer? Are the other 6 medications I'm on going to help? Do I even really have lymes? Even my father the other day asked if it were possible that I had chronic fatigue and not lymes.

Treating lymes right now is like closing your eyes and throwing darts. You try a medication or two for a couple of months or years and if your symptoms go away, you come off it. Then you wait and see if you stay well - if you don't, you go back on meds (sometimes different ones or just a different combination) and try again. So, that's what I've been doing for the last 2.5 years. Trying different regimen to see if I'll ever be able to be anti-biotic free for more than 6months for the rest of my life.

Right now, the jury is still out. But I do believe I have lymes, I believe this treatment is going to work and I am applying for a job at Outward Bound for the spring in hopes that it work out this time around. But really, we need more research, we need a vaccine and we need the medical community to become more lymeliterate.

Are you relaxing at least?

My dad asked me that question the other day... as if this purgatory at home could rejuvenate me. He wants me to be happy, I understand. But I am 23, adventurous and bored. Home is not relaxing, a month backpacking is relaxing. Home is not restful, it is tedious and offers no personal space. Home is the never-ending HowAreYou and the passive aggressive questions and glances that my parents use to figure out if I have been feeling okay.

It's like being chained, I feel trapped, desperately unhappy. I can't let myself think about it or I'll cry. I feel like I am slowly being whittled away, like this place is destroying me. I am not healthy enough to handle "home" gracefully - it's too exhausting. Everyday, every question, every moment being with someone else. Leave me alone.

I want to call it quits. I can't be here any longer. I feel like I am fucking crazy. Someone get me out. Now.