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First off, did any other bloggers watch the new House episode about the compulsive blogger? Whew. I’m not going to lie – that just made me laugh! I’m happy to know that I’m not as obsessive about this as I could be. Not to say I don’t love you all, but I’m convinced my life must just not be as exciting as hers (thankfully)! I’m enjoying the relatively free schedule I’ve got before the storm of Spring of my senior year arrives with the melting of the snow. But, that’s another post altogether.  

I want to talk about the actual storm of the moment.

Today a friend asked me how I was. It’s a simple question. I get asked it all the time, and out of habit I always say “I’m good!”. Sometimes, I’ll give out an “Oh, I’m ok.” or a “Eh, I’ve been better.” I’ve learned to tell when people ask this seriously, and when they’re just asking to ask. Today, my friend was serious. They cared about the answer. They wanted to know, and I didn’t want to mislead.

I stalled for time. Putting off the inevitable, I guessed.

Finally my friend asked why I was avoiding the question. And at that moment it struck me that I had been avoiding answering the question because I simply didn’t know the answer. They were serious. I was too. I didn’t know how I was. I don’t know how I am.

I’m not good. But I’ve been so, so much worse.

I continued to give this some thought before I answered. I trusted my gut reaction, and blurted out that life felt like “a blur”. What a contradiction we live treating this disease. Our days feel long. Sometimes, the symptoms make it seem as if a day is an unending trap. But our lives are slipping away faster than we want to accept, at the same time.

These long, long days mixed with the time slipping through my fingers feels like a blur that I can’t see through.

I want a pause button. I don’t want to fast-forward, and I don’t want to rewind. The past is over and finished – it’s meant to be built upon and learned from, not relived. And the future is full of possibilities that I can’t even imagine yet. I want to live my future as it comes, not skipping ahead. But right now is going too fast. And too slow. I want to pause. I want to take a time out. I want to step out of life for a while and return in this exact moment, feeling more prepared to live it.

I didn’t know what to say to my friend. I explained the blur sensation, and remarked about the good mixing with the bad. And with some prodding, I thought about what it is that’s going on.

I’m reliving symptoms that I’ve been trying to escape for years. Not only that, but new ones are appearing. I can live with that. I can even accept it. But I don’t have to be happy about it. And, I’m not. I’m frustrated. I want this stage in my treatment to be finished. I’m ready to feel better now, please.

My doctor has me finishing up a last month of Mepron – the antibiotic from hell. Or, at least one of them. At my most recent appointment after being taken off this medication my doctor listened to me describe the herx reaction. It was… extreme. It was decided that my symptoms off of the Mepron are worse than the damage it is doing to me in the meantime. I’m still not sure how I’m supposed to take that! So here I am back on the Babesia kick meant to keep me from getting worse. In essence, I’m fighting to keep the small progress I’ve made.

And yet, I don’t feel better. I’m living with a constant headache. I’m dizzier than I have been in years. My joints are swollen and painful. My entire body aches. I have no appetite. I’ve got the sweats, and a near-constant temperature. The brain fog is intense. My memory loss is becoming frightening. And I’m not giving up.

I won’t let this disease win. This round isn’t over yet. 

I’m taking each day as it comes – the good with the bad. And I’m trying to make the most of the good. But I’d be lying if I said I’m ok. I’m not. I’m just trying to muddle through. Tonight I’m embracing my frustration.

Ask me if I’m ok tomorrow.

I may not have a pause button, but I’ve got my first acupuncture appointment of 2010 tomorrow morning. I’m so happy! I can’t wait for it. And I’ve had craniosacral therapy again twice this month already with another appointment this Friday. That’s almost as good as pausing, isn’t it?

May we all have better tomorrows, always. Each day we’re growing, changing, learning, and best of all, we’re healing. We’re fighting. Each day is bringing us closer to our hopes and dreams.

 

Yours in peace and healing, molly

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… aka the post that’s been building up in my mind for over a week. This blog means so much to me. It really does. It’s my outlet, my face to the world. I’ve struggled lately because as much as I love writing here, I feel as if it’s physically simply too much half of the time.

And here comes my venting session – Why does this, something I love, have to be getting harder as I’m supposed to be getting better? Why? Don’t misunderstand me. I do know why. I know that I’m still getting better; I’m just treating the harder to reach “bugs”. Each and every day I’m getting better. But I don’t want this disease to take anything more from me than it already has before I can get it into remission. Nothing more.

I’m scared that it will. New symptoms are appearing, and old ones are rearing their ugly heads yet again.

Writing didn’t used to be this hard. I mean, writer’s block is one thing but this is on another playing field altogether. Brain fog is intense, and it’s frustrating as hell. I know that I can pass my physics class. And yet, one day I get an F on a quiz. Great. I talk to the teacher, get some advice, and go take the quiz again. The exact same quiz. I got 100% on it. The only difference was the days I took it on, and the amount of actual mental clarity I had at the time. And I obviously didn’t actually remember any of the questions or their answers!

When I sit down to write a blog post I have to ask myself if what I want to say is worth it at the moment. Can that energy be used towards something else? Usually, the answer is yes. And that is so deeply saddening to me. Often, however I’m swayed by how I’m feeling. This is natural, of course. But when the disease I’m blogging about is stopping me from actually blogging, then that’s a problem. I don’t like this reality. I don’t want to accept it. I want to find a way around it because I want to be able to blog about whatever pops into my mind with no fear.

My joints ache so much now that typing is an issue, and writing by hand is only possible for short pockets of time. On the topic of joints, walking is an issue. My knees are locking almost every time I get up, or walk. I’m 17 and I feel as if I were 90. My memory is, at times, disturbing. A month or so ago I began to get sores on one of my fingers. Then the finger blistered. After a few days of wondering what had happened, I realized that I must have burned myself. But I have absolutely no recollection of doing that! About the same time, I was reading in bed and buckled in pain when I tucked my legs up. I threw off the blanket, only to see a bruise the size of a golf ball on my leg. By the next morning it was a nasty, black and blue tennis ball. Again, I have no memory of doing anything to my leg.

My mom has actually expressed concerns over my cooking alone. At first, I was angry. Shocked. Disbelieving. Then I slowly remembered how it must feel to watch this happening to someone you love. I’m still shocked, but I’m being careful in the kitchen. If I can’t chop something I don’t do it. If I can’t open something, I ask for help. If I’m shaking too much to get the bread out of the oven I ask someone else to do it. I can’t control when I’m going to forget about a pot on the stove, however. But, cooking is another outlet of mine. And I can’t give it up. That too is something I want to find a way to make work.

The other night my mom and I were watching So You Think You Can Dance. I love this show. It’s always slightly emotional for me, because I was a dancer for years (ballet, tap, and jazz). Seeing the dancing makes me itch to twirl across the room, or have the opportunity to express the very essence of a piece of music. Dance is so touching, and so powerful. It truly opens a person’s soul. But, the other night instead of being moved by the dance I was stunned by the dancers themselves.

After a week of grueling practices and performances before the judges, the girls decided to go swimming on their afternoon off. They were all smiles, jumping into the pool and laughing. They showed no ill effects. If didn’t already know it I never would have guessed what they had just been doing for hours on end. I can’t imagine not sleeping in that situation. I was so puzzled that I paused the show (I LOVE my DVR) and asked my mom, “So… normal people can do that?!?!?!”. Apparently they can. I would kill to have energy like that. I’ve decided that I want to be able to do that. I want to live like that.

I know that I may never have that life. I can barely imagine having that life. But, I also know that without a dream in mind, my motivation won’t be nearly as purposeful. I’m a dream-fueled person. I run off the fumes of inspiration and dreams. And I won’t let this disease take those away from me.

And, here concludes my venting session for the morning! Thank you, so much, for your support. It means the world to me. Look out for my next post – I have some great news, and some new treatment updates to share!

Peace and healing, molly

 

“Dreams are like the paints of a great artist. Your dreams are your paints, the world is your canvas. Believing, is the brush that converts your dreams into a masterpiece of reality.”

I can’t sleep. I want to be sleep. In fact, I wish I was sleeping right now. But no, I can’t sleep because the minute I turned out the light tonight I knew I wouldn’t be falling into a nice dream-infested sleep anytime soon.

 

The darkness was too dark. I was suddenly, unquestionably nauseous and as I lay there thinking I should get up, walk around, find some water, and probably a bucket, I couldn’t move. My legs ache so much I can’t lay on my side like I normally do because they’d be touching. My feet ache. My arms, my fingers, my back, they all ache with pain. My ears are ringing, and all I want is to fall asleep after a very, very long day.

 

But I’m here instead, with my little plastic bucket by my feet waiting to see if I’ll throw-up again. I summoned up the stamina to walk right down the ladder of my loft bed, fall onto my couch, and precede to throw-up. Not just once, but several times. I’ve only ever been this nauseous from the dizziness, enough to make me do that, one other time that I can recall. And that was about four years ago.

 

I was hoping, no I was praying, that things wouldn’t get this bad so quickly. Is this another Herxheimer reaction? If so, how long will it last? Will it get worse, or will it be better? My day went from good  (I made progress in Algebra II this afternoon!), to bad (Both my parents are sick with the Flu, and I’m doing my best to dodge it), to terrible tonight. And I doubt it’ll be getting any better because I’m decently sure that I just threw up at least some of my meds. Great.

 

Here I go, back up my ladder bucket-in-hand.

Thanks for the venting session :)

molly

 

“Sleep is like the unicorn – it is rumored to exist, but I doubt I will see any” ~Unknown

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