Another List

Antibiotics, minimal exercise, no drinking, sleep 8 hours, liquid antibiotics, chinese herbs, massage therapy, regular therapy, drink water, salt and vitamin C protocol, IV antibiotics, sauna therapy, energy work, no sugar, no carbs, no fruit, laugh therapy, cowden protocol, vitamins, herbs, and now... nothing. finally.

The ANGRY post

For kicks I made a list of things I tried to do when sick and then had to either a.) quit during or b.) quit before

- Varsity D1 swimming in college (had quit after two years)
- Econ 1 (quit halfway through because I was spending so much time at the doctors I had to drop a class)
- Wilderness Ventures (left mid-season to go back on anti-biotics)
- run a marathon (started training and had to stop, went back on antibiotics)
- Peace Corps (accepted but had to turn down b/c I had to be antibiotic free for 3 months... wasn't going to happen)
- TEFL course in Spain (had the tickets on reserve but had to cancel, and started antibiotics again)
- do well in an Olympic-distance triathlon (had to stop training 2 weeks before race)
- Internship in New York (left early to go on IV)
- Astro Camp (offered position but then had to turn down the job, not off the IV yet)

My plan was to swim for four years in college, live abroad, and be in grad school by now. I feel like I am starting years behind - that I learned early that life doesn't always go the way you planned.

And I am angry about being sick. I am angry at myself for trying to be "tough" and hold back on my emotions. I am angry that it stole my future and my plans. I feel old, jaded, young, lucky, unlucky, pissed.

But mostly pissed, because lymes did change me. It eroded my confidence, rocked my world out of control and no matter how many plans I made, I couldn't get myself well enough to actually do them. And that sense of powerlessness was corrosive. This new me is one I am still trying to understand... and someone I still resent.

Normalacy...

It's 2008. I have been off medication of any sort (including vitamins) for 3 months, off antibiotics for 9 months, off IV antibiotics for a year. The 9months anitbiotic free marks the longest stint since 2003.

Incredible.

I feel my energy return, the constant chase of disease ebbs. For so long it matter distinctly and crushingly whether I got 8 hours of sleep, whether I ate too much sugar, whether I had food every 2 hours... and I find it distinctly liberating to not have to worry about hunkering down on a floor for sleep or that skipping lunch will make me too nauseous to interact with other people.

I can exercise for 2 hours and not feel too tired to move off the couch. I can make plans in the future and see them to fruition.


It is amazing, liberating, overwhelming and such a fucking relief.

I went through my drawers the other day and threw out the medications in the picture. It was just some of the drugs I had found lying around from the last 1 year of treatment... spring cleaning feels great

With my health back, I realize I attempt to reflect on the experience. But as soon as I start thinking about it, I realize I don't want to... that there hasn't been enough time or space physically or mentally.

But someday I will really be able to look back, acknowledge lymes for what it was and how it affected me. And then, hopefully, I'll be able to share. And I share mostly, I guess, for me. Because there is nothing more clarifying then writing. And because I secretly hope that my story can give someone else strength. You can get better, you will. And in the pain and frustration you will grow.

Argentina...

well. last year this time I was really sick. I just went back and reread some of my first entries and started crying. I couldn't even drive and I was miserably locked inside a mental/physical prison.

Currently, I am actually in a foreign country. I had paid for a TEFL program spring of 2006 but was unable to go because of the IV treatment but I am, 1 year later, down here. Living away from my doctors, away from known diets/foods and away from my normal schedule. It really is crazy - when I pause to reflect I cry. I can't believe I am here, and mostly, I can't believe I went through what I did last year. It was awful.

I am currently taking only 4 different medications and I only take them twice a day. The medications are herbs, so my body is responding well. I still have lingering digestive problems (definitely starting to resolve) and flare a bit around my period.

But really, I feel almost totally okay. My energy is way up... I'd put myself at 95%. I even think it will last.

And it's crazy, down here no one knows I am sick. No one was around to witness the 4 year battle ... there is no guilt-sympathy, there is no slack, there is no expectation for an alteration of their behavior. It's been a really nice change to be free of the eggshells and guilt.

I feel like I am breathing fresh air. And maybe I am better. It's incredible.

Septmeber 4 years ago...

was the beginning of illness for me. It is when it all started, when the fatigue started setting in and I ignored it. When my life, my confidence as knew it changed, eroded and was replaced.

I can't quite reflect, look at it through an emotional lens... it's still too raw. I still cannot even begin to imagine what it all means for me.

But I know that 4 years ago I was beginning this journey and hopefully, now I am finishing it.

confidence and confidence eroding

It's been awhile, almost two months... which is a good sign. I have managed to survive two seasons at Outward Bound. I finished a 22 day course. It was incredible, life changing, inspiring, amazing.

I didn't have to lie in bed for 3 days afterwards, I didn't run a fever. I felt good. Like I made it.

And I did. I am healthy. But I am also still fighting digestive problems that keep me tired. I am still on the herbal protocol, I am still exhausted from time to time. But most likely not from Lymes, from other diseases that come from having a weakened immune system and a totally torn to shit digestive track.

But I am hopeful, well, sort of. I still am waiting for the day I cycle back into fatigue and sickness. Maybe it won't happen but today I am not very positive.

I feel normal

so let's not jinx it. It is pretty incredible... I can go through days and almost forget I was sick. I can let my mind wander to epic adventures like hiking the AT or PCT or traveling to Vietnam.

There is always doubt, I always expect it to be short lived but I feel like i could train again, get back in shape and do triathlons. It's getting harder for me to take my meds consistently because I am feeling so healthy.


It's awesome and freeing and feels permanent. Can I finally leave this stage behind? Man, I hope so.

Some final thoughts

- Acceptance is difficult
- Believe me
- Believe in me
- It's never seems that difficult when going through it, it's just in looking back that I realize how awful it was... a form of self preservation, no doubt, but highlights the need for someone to advocate for me.
- Help me to be compliant
- Be your own advocate within the health care system. Don't believe the first opinion, or the second even. You have to fight for the best care possible.
- Don't let disease rule your life
- I would probably have been cured faster if I had just taken some time off from school for awhile, allow myself some time and space to rest.
- The above comment made, I also don't regret the choices that I made. You must be both psychologically happy and physically cared for to heal. Sometimes you just have to do what you want and take the consequences.
- Not knowing is the worst
- Hoping is dangerous but important
- Love is essential.
- It's wonderful to help, but the final battle must be fought by me.
- The best gift is emotional support and listening openly
- I am going to get 100% better.

Lessons from the sick

I am not sure how much longer I am going to keep blogging... I am feeling repetitive. Most of my intense thoughts are already out there, I just keep cycling them around. As I get better, then relapse and start new protocols, it will be more of the same. More self-doubt, more anger, more forgiveness, more frustration, more hopes crushed, more meager attempts of acceptance. I'm not sure writing it out again is helpful to anyone, including myself.


Blogging has forced me to think about being sick, to express what it means concisely and quietly. Giving those I love a look into my convulsions of my mind. I am feeling pretty good right now, which makes life seem incredible and lymes a small blip on my life screen. Blogging seems less important as good days outnumber bad.

Before totally dismantling this blog, I am going to try to put together some final thoughts on a long fight that is continuing in my body and mind. Let me know if the blog continues to be helpful or if what I have up is already enough/too much of an insight into my life.

How quickly I take for granted where I am and what I am able to do. As the IV treatment fades in my memory, I demand more for myself.

for everyone to understand

I don't make decisions in a vacuum. I am sick of everyone else getting slack around here and no one cutting me any. If I balk at getting up at 7am, it's because I didn't sleep well last night and two nights of shitty sleep could be an end to my immune system.

And when I mention that, no one listens. It's like I'm complaining or not tough enough or that they don't believe me. Oh, no, wake up at 6am, fuck your new med protocol to make sure you can hold someones hand as we go drop of papers. Stop being so stubborn, Liz, just accept that you need to sacrifice for someone else's psychological needs.

well, what the fuck about my physical ones? For all this talk of acceptance and support, I rarely feel like I get any.

Round 6 begins

So, I am moving on. I am officially off antibiotics and trying herbal supplements. Stepping off the mainstream medical track and embracing the "alternative" side.

The protocol I am following is called the L-protocol (Cowden Protocol). It is an incredibly extensive 6month protocol in a 36 page packet where I have to sign off for every dose I take. It's a gradual program where the number of pills and drops you take increases, making memorization impossible. I drink water with drops of herbs in it 1/2 hr. before breakfast, then again during breakfast and then after, I do the same thing at lunch, dinner and the 1 dose before bed. I am also taking pills - digestive ones from last treatments (theralac, s.bilardi (sp?) and acidophiles) as well as new ones that I can't remember.

Essentially the new treatment will be easier on my insides, less toxic for me overall but might cause a herx reaction (flaring of symptoms as the lymes bacteria die off). But it is super confusing and time/compliance intensive.

It makes me tired and overwhelmed to think about - I need to re-think everything I do, carry around with me the visible and heavy amount of medication. I have to get used to keeping track of a whole new protocol. I am sick of new protocols, it's like starting a semester again - it takes a couple weeks to get used it.

And granted it's only 6months...

Ah, and the health update

So, I had e-coli for a couple weeks. I felt terrible. So, I took myself off antibiotics and I've been off them for 12 days, almost 2 weeks. I feel great. I am just on immune supplements... and I feel really really great.

phone consult tomorrow with the doctor to determine the next steps.

Where I am now...

So I have been on my island Since March 18th. Around 6 weeks. Here is what I have realized:

1.) It is hard to come into a new community where people don't know me, much less a community that is transient and has no particular reason to understand me. They won't be working with me long term, they are not around me enough to make it worth it to try.

2.) This particular community favors those who are healthy, those that are active, those that can do it all themselves and those who are not a burden. I am none of these things.

3.) I cannot take risks. I have no lee-way. I eat a bad meal, I feel bad for days. I get e-coli (like I did the 2nd day here) and I feel sick for 3 weeks. I cannot skimp on sleep, it is a huge gamble. This is the part that is the hardest. I am high maintance because if I am not, then I get really sick.

4.) This isn't in my head. It might seem like it, but honestly I feel pretty damn good right now, and it makes me realize that it was bad before.

The bottom line: there are few physical things people can do for me. what I really need is emotional support, which takes trust, which takes time and effort. I feel supported now, but I also feel pretty healthy right now. What if I feel crappy again? will my co-workers be here for me? Can I expect that? am I being reasonable? Am I dysfunctionally rescuing myself??

A post from April 11th...

I wrote this a couple weeks ago but never got around to posting....

Feedback given to me from my boss... first, I have an attitude when I am tired, a tone that is inappropriate and hurts people. I need to vocalize my pain - people need to know where I am coming from. The second was that I need to not pursue self-reliance at the cost of self-care. Do what I need to to take care of myself, even if that means asking for people to do things that seem extraordinary.

Okay, I appreciate all that. I really do. But do you honestly want me to vocalize my pains? If you want me to tell you when I am sick, I will but you'll just think I am complaining all the time. I am sick, I don't feel well - but even communicating that takes work. And then... there is not much you can do to make me feel better. Cure me. Okay, sure, but beyond that - not much. I need to nap, I need to be alone, I need good foods.

The problem is that you can't help me. It isn't like I have a broken foot. You can't carry my bag and open the door for me... I have a major chronic illness that creeps around the outside of my life and my psychie. You want to do something for me? then get to know me well enough to know when I am too sick to ask for help. Get to know me well enough to know when and how to extend grace. You want to help? help me figure out how the fuck to not feel like a burden, how the fuck to be self reliant enough to not cry every time I think about the lymes. Maybe you could just listen to my tears and tell me I am doing a good job.

I need to be told I am doing something right. That I am a good person. There is not enough self love. 2007 is the year of self love. And I have none. There is the huge divide between what/who I think I am and what/who I am while being sick. I can't bring the two together, I hate the girl who is sick, who offers nothing, who takes all the time, who is tired and a drag. You don't want to hear about it - you couldn't possibly. To hear about it would be awful. you don't want to get into my head. I don't want to be here either.

AND, again, I am not Tuesday's with Morrie. I can't be cheerful and nice all the time. sometimes I want to scream: you try being fucking nauseous all the time and doubting yourself all the time. just try. just fucking try it. then I'll be more than happy to tell you that you need to reach out more, articulate your needs and figure out systems that help you make it work. And you will be the one that wants to punch me in the face.

hate this.

Let me know if you have any thoughts on how to vocalize pain without complaining or impelling people towards guilt for inaction.

Sorry for the rant.

the update from Outward Bound...

Lymes has changed me. Changed my personality. I used to be able to push through regardless of consequence: keep swimming, be sick in school, play polo, live in NYC - but I can't do that anymore. I can't make that decision. It's changed my confidence, my belief in me - destroyed my outgoingness and self love.

Why am I so sad? Am I sad that it isn't going to work out? But if I think it, then it's true.

This is where I want to be. What I want to be doing. I desperately want to believe in me, in this. But my symptoms are getting worse. Am I reaching too far? Why doesn't the nauseousness and fatigue get any easier?

Getting there...

The nausea has diminished. I am mostly sticking to the protocol and I feel optimistic. Really, for the first time in years I feel like I might beat this. That I might be able to get better. I wrote earlier about not wanting to take pills and live inside the lines - but right now, I'd be happy for that life. I'll take it with gratitude. Let me go, even with restrictions. Anything is better than the ball and chain of the IV.

I can look back now a bit. I can let myself feel a bit more and realize how difficult it was in the beginning, how taxing it is to be an IV patient, how hopeless it felt. It's like only when the pain is gone can you realize how bad it was to begin with. Humans lower their standards so easily, accept life at a certain level. It's hard to fight for the higher standard when you are healthy, let alone sick - you truly have to have people who will do it for you. People who will believe for you, people who will fight for you.

The prognosis now is 2.5 more months of anitbiotics and then onto homeopathic/immune therapy stuff... that feels so short, so completely do-able.

Nausea and the like

Tubes are gone. I feel an incredible amount of gratitude and relief in having them gone. I feel like I have reclaimed my body again.

But I am now on some really heavy antibiotics and am spending a lot time feeling pretty sick. It's a huge mental hurdle to take my meds and then bare the nausea afterwards. I would much prefer pain to nausea. The one good thing about IV antibiotics is that they skip the stomach and digestive track.

Let's hope I am tough enough to stick to the protocol for 3 months.

I feel pretty.

There wasn't much pain, no big show, but the tubers are gone. I think there is a bit of shock. The removal doesn't coincide with good health, nor with anything really. They were there and now they are not.

But I actually feel a bit prettier. And more confident. I feel like I am on the right track, closer to well. Like I've taken that next step forward - whether that's true or not.

But I also feel kind of scared because I have no excuse anymore. I can be fairly hard on myself, the tubes gave me an excuse to chill out. If I didn't have the energy to do that, to fix that, to try, then I wouldn't. But now, with the tubes gone I can feel my mind flipping back... you aren't really that sick, if you just push yourself (like they all expect) then you can do it.

The tubes were like a little safety blanket from the world and from myself. I might miss them...

The line comes out.

Tomorrow, a la 11am, I am officially saying good bye to Larry and Sly. My central line is being removed and I will be able to sweat, to shower and to throw away my IV pole.

Feeling a weird mix of relief and well, anxiousness. I'm still on oral antibiotics. They tell me I might even feel worse for a bit when the line comes out. There is going to be no definitive "I am now healthy" moment. But I feel like I am holding out for one. And while I'm thrilled not to have the line in, it also takes away my ability to describe my pain quickly to people. Without the line, my street cred. diminishes. I don't' know why this worries me so much, but I hate having people treat me like either a.) nothing that big is going on or b.) that they can help fix me. Having the line generally eliminates both.

I think I just expected to be happier about this than I am. I am just feeling... off.

A reserve of strength

I have been debating this Mid-march deadline. (see below posts) Am I ready? Can I do it? Am I being stupid?

You know what, fuck it. I'm going. If I fail, I fail but I gotta try. No one can guarantee me anything in terms of this disease. Staying home probably won't make me better either.

So if I don't make it - I'll deal with that when it happens. But for now, I have to at least give it a go. I am healthy enough to try - to see if being psychologically happy and successful can boost my immune system enough to kick this on more permanent basis.

Though I feel sick, I also feel strong today. Strength in this belief that I am going to make it. That the nausea is my body telling me it's ready to be on less antibiotics, that some sunshine, activity, adventure, and distance from home will help, not hurt. It's an optimistic day today. I believe in me.

Let me elaborate

I do feel nauseous... after I eat, after I take my meds, if I get dehydrated. My kidney's are hurting, all the time. I am feeling weak. I look at the meds I have to take and want to vomit. Seriously. gag reaction.

But I think this sick feeling does NOT have to do with lymes but more to do with the toxicity of the antibiotics. Also, I went to an allergist who told me i am borderline diabetic and need to avoid all carbs, sugars, and fruit. My weakened immune system has trouble fighting any sort of allergen too. So my allergies get worse, which taxes my immune system more and which makes it harder to fight all allergens (not to mention anything else that is toxic to my body like yeast in the gut, etc).... the cycle of depleting my immune system continues.

I am also allergic to chocolate. Now ain't that a real kick in the nuts?

The score

I made it through Europe, 10 days... a few of them limping, crying or coughing but I did make it through. There was no real partying at night. We had to go sit in cafes from time to time for me to regather my strength. And I was cranky. But I did make it.

It was a surprising actually. The first night I almost went home. In staying, I proved to have more strength then I thought. Which is nice.

It took me a week to really recover. Maybe more. But today I am okay. It still begets the question of it I am really stronger or just able to push for a bit longer? My IV is coming out the first week in March at the 6.5 month mark. (I think) My job starts March 17th.

Today I am nauseous.

Fragile days

I had a fragile day today... went to more doctors who told me that I could get better if I eat things I don't want to, take more medications and live within the tight bounds of healthy. I was again reminded that I don't have an immune system. I was again talked to like I've never been sick before. Again, I cried in the parking lot.

They look at me like I'm crazy when I don't fully buy into their regimen. The nurse asked me if I had any hope for recovery. I just laughed and shook my head. Please, they've been telling me either I'm not sick or they can fix me for 3 years... I'm not better. I had that one shining week of miraculous wellness but here I am - sifting around for enough energy to drive the 30minutes to my doctors appointment.

I'm supposed to be going to Europe for a week. tomorrow. How did I become the girl scared to push the limits? Scared to try? Scared to change? scared at all, in fact.

Lets be honest

I'm feeling so out of sorts right now, I didn't have a good day today... which makes me think that I am not ready to come of the IV. I'm really scared, scared that I'm pushing too hard, looking to get off too early. I'm not sure I am ready for it all. For a real job? I can't even hold down a part time one without getting really sick...

I have no faith that the IV worked.

I guess I am just frustrated? Weathered? Skeptical? Smart? I'm not sure but whatever it is... I am tired. Sad. Some days I can accept this and others I want to punch someone in the face. Today I just felt like I was sinking, all day, just sinking...

An Account of Time

The line went in August 23rd. Hopefully the line will be out in time to celebrate my 24th birthday and be short of the 7month mark of March 23rd.

To recount, mostly for my interest:

- I spent the first solid month in bed... essentially unable to walk up and down stairs or feed myself.
- I spent the next month almost in bed... sometimes able to journey out and about but always at a pretty substantial cost.
- I spent the next month sick and off IV... a result of one of the above journeys.
- I spent December and Jan slowly working my way up the block until I hit the revered "corner"

Within the last two months I've spent my time as follows within a given week:
- 8 hours of infusing time
- 1 hour of flushing lines, prepping for infusing and finishing infusing
- 1 hour of dressing change and blood draw
- 2 hours going to an integrated medicine guy in Trumbull
- 2 hours going to and fro my therapist (apparently chronic illness isn't good for the psyche)
- 2 hours (at least) on the phone to the insurance company, the doctors office or CVS
- 1.15 hours a week getting a massage (to get the toxins out and boost the immune system)

Total of hours spent per week on illness: 17.15 hours.
Total number of months spent on IV: 5months (soon to be 6)
Total amount of anger: large
Total amount of acceptance: small
Total amount of belief that this is the last treatment I'm going to have: non-existent

To be honest, I am scared about getting the line out. Scared because I might have to go back on, scared because I don't feel 100% yet and scared because it's going to end 6months of my "routine" and it might be the only routine I can keep.

The update

Doctors today. 1 to 2 months left. Beginning of March the line comes out.

90% is hard. 90% is so close to 100... too close. How am I supposed to slow down and finish getting better when I am finally able to do something? The hardest stage.

(eh, it's only the hardest because I am in it)


Do you think I'm better? Sometimes I hope I am. But that is so dangerous. I can't help but think I might be able to go work for Outward Bound but I'll be back on meds by September. Not knowing is fucking brutal. The end of this stage is near. But who knows when the next one will be...

I belong anywhere but inbetween

I have a job. I work at a rock gym. Seriously. It's incredible. I have to go do something. I have to get out of bed. I have to. The gym is sweet and so are the people, but the best part is that I have enough energy for a part-time job. I can make it through the day and think only twice about being sick.

Decisions to do normal things come more easily and with less stress because the repercussions on my body are not as severe. It's truly freeing. I have a purpose (abet minor).

I feel like I am flying.

Tired

I am getting to know my body really well - and I am lymes tired again. After a good week, I am fighting digestive problems and lack of energy. Another wave. Another crash. I'll put the thoughts of travel and a part-time job on hold (again). I really hate feeling like this. Better. worse. better. worse. worse. I was secretly holding out for my IV to be out by the beginning of Feb... to be able to make it to London and to Mardi Gras and be able to hold down a job to give myself some purpose in life.

Not that frusturated this time around though, just tired.

And at the same time

Even as I wrote that last post... here's what was really going through my head:

My digestive track is a nightmare, I am developing food allergies. My white blood cell count is low again. My sleep pattern is screwed up (not that it ever really recovered). I will spent a grand total of 22 hours in the doctors this week coming up. And I keep dreaming about swimming.

Also, my world is narrowing. I have to stay within in parameters - if I sleep well, take my meds, exercise when I can, sauna regularly and eat all the right foods, then maybe I can get healthy. That is a frustrating box to stay in. I can't push it, eat ice cream or stay up to watch the ball drop... but if I just don't do the things I want, then partial health can be mine!

Blow me.

It's been awhile... it's a good thing

I haven't written - I've been busy eating foods I shouldn't, staying up too late and breaking all the rules.

BUT that is to say that I can (do all that). That I have started craving exercise and to check things off my to-do list. That I can go out dancing until 4am and not take 2 weeks to recover. That is so say... there has been marked improvement. Treatment is working.

Get excited, I am slowly becoming me again.

I went dancing. It was wonderful. But I am lonely. I have wonderful friends but I am antsy. Still unhappy? I guess so. The drugs aren't too bad, seriously. I feel well enough to stop beating myself up about being a burden. This whole crazy experience has forced me to look at myself in the context of my friends, family, and other relationships.

But really, I can't figure out how to live within the conclusions I've made about myself, my family and my life. I don't know how to fight for me yet. With this new job, I just keep wondering if I am being a fool... Riding the wave.

Someone needs to teach me how to get consistent exercise, how to love myself despite the size and position on the wave, and how to be. Just accept this as a great adventure in and of itself, Liz, come on.

A future?

I got a job.

And it is amazing.

It starts in March.

I might still be on IV.

How to be happy...

My doctor, after slapping me with my extended IV sentence, had some good advice:

People base their happiness on how well they do what they do and what they have. But when you are sick, you don't do much and you certainly don't do it well. The key, however, is to love yourself, despite whatever is going on externally. So, fight for yourself. Love yourself despite your sickness, love yourself despite your wealth and despite your relationships. Getting better won't make you happy. Only you can do that...

smart man.

And, he continued to say, Lymes is like a constant wave - there are highs and lows, goods and bads. And as a chronic patient, I have to learn to not ride that wave... because the ups might feel great but the downs are going to hurt like hell. And no one can love themselves through that much thrashing.

Feeling alive...

You know those times when life is good. like really good. and you can't stop smiling?

I'm getting there. Not because life is really good, but I am starting to get some energy back, this new regimen is working.

It's so hard to describe, it's like the ethereal feeling that I know I've just legitimately been in a moment. Like for one second I wasn't sick, or working on having energy or thinking about how I would "normally" act - I just was. Those moments make me want to shout... and I always end up smiling, knowing that I am appreciating whatever mundane thing just happened way more than whoever is with me.

The next phase

Maybe this post should be entitled fuck.

Doc told me today 3 more months of IV. Bringing me up to a grand total of 7months of IV. He clarified a little when I started to cry, saying that I can get the central line out only after I've plateau-ed (as in not getting any better because of the drugs). So really, it could be longer - but it could also be shorter too. Minimum date: Jan. 25th.

Stuck at home. No drinking. No sweating. No eating yeasts or sugars until I'm off antibiotics and I have an immune system - which will probably be many months after I'm off the drugs. So the hope for eggnog and Christmas cookies will have to be delayed until next year.

Man, I am bitter.

White Blood Cell Count

is a bit low. I'll get another draw this week and hope it doesn't continue to drop. High WBC's (from a CBC test) indicate cancerish stuff, low WBCs indicate viral infections. After reading up on lymenet, it doesn't seem to be a big deal. So maybe I'll try to not worry.

I realize I have a new vocabulary, new set of abbreviations and medications to choose from. I also have more things to worry about - like WBCs. I've already had a possible-cancerlike-growth-on-the-thryroid-scare, I don't want to go through it again... but then again, sometimes I wish I had a sexy self-explainable disease like cancer. Lymes is too complicated.

Selfish

Being sick makes you selfish. I feel incredibly, incredibly selfish. I think about myself, how I am being precieved, what I need, how I feel and how you should be reacting to me. It's so hard to get outside of that. I can't seem to stop demanding things from my family and friends. It's christmas and I don't want to take the time to shop for my family and I don't care. Isn't that crazy? It makes me kind of sick to think about - I am so self-absorbed. I can barely remember what my friends are doing yet I demand that they remember my med cycles...

I can't decide if that is okay, because I am tired and I can't give anyone else what they need, or totally unreasonable because they are probably in pain too. My sickness shouldn't be an excuse.

Can you tell that I am so selfish? Does it bother you or do you just write it off to illness? I feel guilty about it but then in the same breath entitled. gross.

don't judge a man...

I hope you respect other people's pain, even if you never hear about it.

Pain, of all types, is often too hard to describe because it's complicated and because misunderstanding can be devastating. Extend some grace, just because you don't know the story and don't see the tears, doesn't mean you can ignore the pain.

A protest!

My friend Mark, my mom and I went to a lymes protest in NY on thursday. We got to hold signs and I got interviewed by local TV stations because I went with my IV drip in (pole and all)... very exciting. It was to protest the new guidelines published by the IDSA that would severely curtail the treatment new lymies get and would make any new treatments for me difficult to get.

There is an important petition going around - please sign it if you haven't already. It's at:
http://www.lymediseaseassociation.org/referral/Petitions/Petition.php?id=1


Lymes, unfortunatly, is an expensive and political disease. Remember to be your own advocate in the health care system, they'll spit you out fast if they can.

I would like to be able to thermal regulate. I would also like to be able to sleep through the night. And my aunt is right, IV poles are perfect for hanging christmas decorations.

Holter Monitor, IV Pole, and the like

I have a 24hr holter monitor hooked up to me right now; it's like a little EKG machine and I am just continuously hooked up. My mom and I went shopping yesterday and I looked like a crazy robot with all the tubes and line. Hysterical trying to explain to the dressing room lady why I didn't want to come out and show her the shirts I was trying on. The halter monitor is just trying to figure out what is wrong with my heart rhythm and the loud heart beats described in a previous post.

In addition to my holter monitor, I just switched antibiotic companies (saves my family over $4000 a month - United Health covered the first 28 days of my "experimental treatment" but haven't covered the last 3 months). The new company has different rosephin bags, so now I have an IV pole. I am on pulse regimen, 4 days on, 3 off. The 4 days on are 2x a day - so it is 3hours a day just on medicating myself, not even counting the phone calls, insurance/billing crap, and doctors appointments.

It's funny and bizarrely gratifying to have so much intense manifestations of my disease right now. Like I mentioned before, it's better to have your appearance match your pain, it's the only way you get credit for it. But now I am severely limited in my mobility.

You look so good for being so sick!

Please. Hearing things like that makes me feel a.) like you don't really believe I am sick, b.) that you are undermining how hard I am working to appear that way and c.) that as long as I look fine then you don't care about anything else.

Time flies

I haven't posted because I have been feeling better. I've been off meds for 3 weeks and am feeling about 80% normal. It's like total freedom. I'm not better but I don't feel foggy, weak or nauseous. I can sleep 9 hours a night and function the next day. I've even drank once or twice and felt fine... but I can feel the doubt creep in. Anytime I feel slightly sick it's like paranoid delirium. Am I sick again? Did I wake up in the middle of the night because of night sweats or just because I had a bad dream? Am I just slightly tired or am I lyme tired? Even if I feel good, how long will it last? Will I get sick again? Or rather, when will I get sick again?

The ever-present threat of "worse" is crippling. A nagging small fear that eats away at life. It must be the same with any chronic disease. When, when, when? Hyper-vigilance can't fix it and if I do relapse, I will blame myself. Anger. Guilt. It already dominates how I think, if only is too easy to play...

I go back on rosefin tomorrow. They are starting me on a new treatment, 4 days on at 2 grams per day and 3 days off. I have to go off zithro, omnicef, ketek, etc because it was causing problems in my heart. No more mepron or malaron. Yellow paint is done. It doesn't feel defeating, almost exciting because I know I am in the final stages, the final push of treatment and when I get off meds, I might be able to feel like I do now - and I feel pretty good.

normal. I feel like I am approaching normal. Right now, you wouldn't guess that I am sick, I can appear just like you. It not as much work to be myself, so it's not as taxing to be around other people and I can stay around longer and not be as tired. So there is less guilt and frustration.

I am going to make it. Just you wait.

Hope?

They tell me I'll by symptom free eventually. But symptom free how? By taking antibiotics for 6months out of a year? By staying at sea level for the rest of my life? By avoiding serious physical exertion? Because that isn't life to me, that isn't "symptom free."

I want to be symptom free AND drug free AND be able to live the lifestlye I want. All Three. I demand that, for myself.

I actually met someone today who had battled lymes for 10 years and has been symptom and drug free for 4 years. Only 1 tiny relapse. And she doesn't even take vitamins anymore. I guess that's hope.

The hardest part...

... is that some days are terrible and some are fine, or close to fine. There has been no miracle upswing. No consistent energy gain. No everyday bringing me closer to my goal. It's just up and down. One good, a couple bad, a couple good, another bad.

It's just so inconsistent. I am not sure whether to think I am getting better or worse or how I can even tell.

If I feel bad, then the lymes is in my blood and theoretically getting killed. If I feel good, then maybe all the lymies are gone and I am getting better. Or perhaps both reactions are just a by-product of the massive amount of medications in my system. I guess only time will tell.

End of the hypothetical rope

Yeah. Today was a bad day. So was Yesterday. So was the day before. I feel crappy. Incredibly crappy. And I feel defeated, like beyond frustrated and well into depression.

the sliding scale

It's weird. Right now, I would be so excited just to have my normal energy back. Give me pills, give me pickline but for the love of god make me feel better. But really, once I feel better I am NOT going to want to be on the central line and once I am off that, I am NOT going to want to be on drugs of any sort and once I'm off drugs I'll NOT want to be taking pills at all.

So there's that problem. But right now, I keep thinking that I'd be okay with taking anti-biotics several months out of the year if it means I can live the life I want. But is that lowering my standards and more importantly... is it even true?

Little victories and Little Defeats

Victories:
- It looks like I'll have the hickman out by mid-December
- they expanded my diet to include "anything" as they are worried I am malnourished
- I am getting taken off azithro and put on some other new exciting drug
- We are getting an infa-red sauna, lymies don't like hot temperatures
- I got moved from 7 days a week of intravenous to 5 days on 2 off... hurrah.
- right now I am antibiotic free... 10 days of system recovery as mandated by said unknown "systemic infection"
- I will someday be able to ski again

Defeats:
- I still have the hickman until mid-December
- the "anything" part is actually quite a small list of "anything" - but I can eat pears now and brown rice!
- the new drug is going to make me nauseous
- nothing bad about a sauna - winning all around
- now I just have to keep myself on schedule
- I am still taking 20 pills a day to help in "system recovery"
- But that day will not be in the next year. I have to stay below 5,000 feet for a year.

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.

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.