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Toxins.

My LLMD brought up The Big Bad Word at my appointment this week. I hate the word toxins. Even more so do I hate the word toxic. I’m a visual person, and the word “toxic” brings with it only bad images.

I see hazmat suits and warning signs.

My LLMD appointment was on Tuesday. My LLMD is moving to a new building this month, and the next time I see her will be there. I can’t wait. For me, atmosphere means a lot. The clinic I have been seeing her at for months makes me ill. They have those lights that buzz, the nurses wear too much perfume, and the overall feeling of the place is sterile. It has nothing that stimulates healing for me. I really hope that the new office will be more suited for her; I really do. We patients deserve it.

My appointment can be summed up by the title of this post: The Big Bad Word.

I went in feeling that I was herxing. I know what this feeling is. My body is slowly becoming overwhelmed by toxins. The newest antibiotic trio has been working. But, is it too much? If you’ve been reading my blog for a while you’ll know that I’ve always been sensitive to treatments.

I feel as though I take two big steps forward in treatment. I make progress. I taste it. Then, my body forces me to back up again. I feel as though I’ve been in the same place for months. What has changed? Very little, actually. I had those great 3 weeks, and since then I’m back to where I was.

I’m frustrated.

My body is trying desperately to detox. I’m breaking out in whole-body sweats. My skin literally itches. My body is showing signs of trying to shed these toxins but it needs help. I left her office with the names of two new supplements to add to my regime which will aid in the detoxification. One I still need to order, and the other is in the mail already. I should be starting at least that one next week.

My antibiotic dosage has also been slightly reduced in order to help my body adjust. We’ll see if between these things I’ll see a difference. I hope so. Right now I’m living in a fog. My head feels as though it will explode at any moment, and my overall pain levels are increasing. My fatigue has struck again. What I laughingly refer to as my memory is becoming tiresome. I’m shaking like a leaf.

My daily functionality differs day by day.

Today I had plans to go shopping with my best friend. We ended up staying at my house, making popcorn, and watching Robin Hood: Men in Tights. All in all – it was a great day!! I’m grateful for it. I had so much fun. I laughed. I smiled. We talked. I loved this day. But our plans changed because suddenly this afternoon I was hit unexpectedly with a wall of fatigue.

I literally turned off my computer, the lights, and fell asleep on my couch for 20 minutes. I never take naps. When I do, I know it’s serious.

Maybe that’s why I enjoyed Robin Hood: Men in Tights so much today… humor to heal the herx? I’m willing to give that a try. Anyone ever tried detox by laughter?

Laughter heals – that much I know. But does it detox?

Well, it can’t hurt :)

 

Wishing you health & healing,

molly

 

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” – Bill Cosby

I’ve been meaning to write this for over a month now, but I’ve never gotten very far on it. Oh, I’ve opened my writing program, dashed out a few lines now and then, but it never felt right. Nothing ever clicked. Nothing ever seemed right. It still doesn’t.

But I’ve decided {albeit belatedly} that this is what needs to be told. This difficulty to write is a symptom. Writing has never come hard to me. This, this isn’t normal. No. It’s a symptom, and I want to have this chronicled, if not for myself then for all those others out there who know what I’m talking about.

I feel as if there is literally a blockage in my brain. The frontal lobe has separated, and I can’t connect the pieces. I feel as if most days all I get accomplished is simply running around after myself picking up the small bits I keep dropping, only that I won’t notice until tomorrow that I really didn’t pick up any more than I missed.

Two steps forward, one back. Two thoughts forgotten, one remembered.

I feel disconnected. My body is telling me things and I’ve lost the decoder key. That’s never good.

I see my LLMD this week. I’m still not sure what I’m going to tell her. Maybe writing this will help me pick out the bullet points, I don’t know. A month ago I didn’t know what to tell her either – other than exactly what she had been waiting for me to say. I told her that I was placing myself in her hands, and she could do with me what she willed.

Of course, I’ve been doing that for over a year. But this is different. I told my doctor that the time has come for me to hand myself over to her. I have no school, no job, limited plans, and an entire year to concentrate on healing myself. I told her that she could throw at me whatever treatment she felt would be best for me and not worry about how the treatment would affect my life. This is what this year is for, I told her.

You should have seen her face.

She knew this was coming, and was she ever prepared. I’m now on a trio of antibiotics which are supposed to be working in unison, as well as an herbal tincture. I won’t get into the specifics of medication names – maybe I will at a later date – but I’m absolutely sure that I’ve gotten myself into exactly what I knew I would.

I’ve opened a door, and walked through it. I’ve committed. This is Lyme Disease treatment, baby; and I’m grateful for it!

At first I was shocked. I didn’t feel a horrible herx. Every day I took my dose in the morning, afternoon, and at night and just waited. I waited to feel something. And I did. Soon, I felt –gasp– better!

Each day flew by. I was making jewelry, rolling paper beads and listing items on Etsy. I was talking to friends. I was doing things!

One morning I felt different, and not in a good way. I spent that day on the couch. I gave myself time. And the next day I was up, feeling great again! I couldn’t understand it – but I wasn’t questioning it. About another week went by before I spent another day completely on the couch. Then, slowly, I began to notice more symptoms each day. Little things piled up.

Cold sweats, heart palpitations, constant, nagging headaches, and brain fog crept up on me until before I knew it they felt normal again.

I’m so, so grateful for those blissful few weeks! They gave me time to feel my feet grow steady under me. I enjoyed them! I was tired, of course, but I was never actually sure whether I was tired from being sick or tired from doing too much because I felt so good. Those are the days I would choose to live over again. When I look back on this month, they are the ones that I remember. I don’t recall what caused me to spend a day on the couch 3 weeks ago. But I do remember getting to listen to live Irish music downtown with one of my oldest friends. I do remember all the jewelry I made, and the family who lovingly supported me whilst doing it. I remember the days that I could cook, rather than the times I was too sick to eat, even though I know both of those things happened. They must have. 

Some of these things I’ll blame on the whole horrible-memory-due-to-neurological-Lyme-disease thing, but I want most of the credit for this to go to the fact that there were just so many more good days than there were bad, and that’s something that I haven’t gotten to say in a really, really long time!

I might be hitting a herx now, but I had some great days before it hit. I think we’re on the right track. And I think now I have a better idea of what I’ll be sharing with my doctor this week.

As far as my blogging goes – look for me. I’m intent on sharing my healing journey with you all, and that involves the ups, and the downs. And I’m telling myself that my writing won’t improve at all by ignoring it. I need to polish the tarnish away, sweep away the cobwebs, and join the land of the bloggers again.

 

In peace & healing,

molly

 

“Happiness is nothing more than good health and a bad memory.”  – Albert Schweitzer

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

Oh my. I may have escaped La La Land – for now. It was a tough day today. I felt a complete disconnect from my mind and my body. So strange, especially after having a great craniosacral appointment this afternoon. Anyhow, let’s hope this breakthrough can carry on until tomorrow! I could use a day with mental clarity. It helps to be able to think through the fogginess every few days. I was just given an extension on two of my hardest classes {I love my teachers, have I said that?}, but I still have a lot to do and I’m starting to falter. One step forward and two back.

Same old story.

But, I’ve realized I’ve had some improvements lately! Yes! I love sharing those. Remember I said in my last post that I had some treatment updates? If not, it’s ok, I had to go back and re-read my post before I did. But, I do!

First, I’ve finally been cleared to begin taking Nattokinase. You might have heard some chatter about this supplement before. I know I have. As far as my understanding goes, it will break up the fibrin clots in my body so that the antibiotics can get to the newly exposed bacteria.  Sounds good, right? This enzyme has also been talked about in conjunction with the Lyme “biofilm”. I’m not going to touch on this only because I haven’t done the research on it. I really know nothing about it. But, if it helps with that – awesome! No complaints here. My LLMD suggested Nattokinase as an option way back in March, or so, but we couldn’t order it right away. Turns out that by the time we had received it in the mail I was advised against taking it. That was during my ICP crisis, and they didn’t want to chance any bleeding into my eyes. Nattokinase does act as a blood thinner.

Secondly, I’m excited to be adding Turmeric to my daily arsenal of supplements. In very high doses, this herb has been found to reduce inflammation and pain in the body. I’m all for pain relief these days. My pain has been flaring up more than I expected this fall. It’s been bad. So I started 900 mg of Turmeric three times a day last week. By today I realized that my pain level was down to a 6 when I went into craniosacral this afternoon! {My pain levels have been around 8 & 9 consistently this fall}. Amazing! Let’s see if this is a good fit for me. I really, really hope so.

Turmeric

These pills are HORSE pills though. I mean it. I measured! It’s practically an inch long, no joke. I have photographic evidence! Sorry for the blurry cell phone picture, my camera died this afternoon. But look! Sad thing is that I don’t even feel it going down. 

 

And last but not least, another supplement has been added to my polka dotted bag o’ meds. I’m now taking 5-HTP each night to help me regulate my sleep cycle again. It has been shown to increase serotonin levels. Over the past few weeks my sleep has been fit-full. I would wake up exhausted and feel groggy for hours. I realized yesterday that it must be helping, because I’ve been so tired at night that I’ve been falling asleep before doing any reading. I never do that! I’m not only just falling asleep, but I’m staying asleep all night. A full night’s sleep – imagine! Oh it feels good.

I can’t wait to go back to my LLMD in a few weeks with all of these new realizations! Progress feels so good, even if I’m still pushing my way towards the end of a very, very long herx. I’m also waiting to hear what news my LLMD has brought back from the ILADS conference over last weekend. Hopefully some new ideas for my treatment plan.

I had a Lyme co-infection test near the end of the summer and it came back with slightly positive Babesia result. So my running infection tally is now Lyme, Bartonella, and Babesia. Bartonella and Babesia are common tick-borne infections often found aside Lyme disease.

So, some good news, some bad.

For now I’m still thinking of that glass as half full.

Peace and healing, molly

… 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.”

Just a quick post before I fall up into my bed. {I say “up into” because I have a loft bed, and try as I have, it’s impossible to just fall into it. Frustrating, yes, but I deal because I love it.} I almost forgot over the weekend, but I have an appointment with my LLMD bright and early tomorrow morning. You’re all in-the-loop again. How’s it feel? I’m enjoying it! 

I just finished writing up my most recent symptoms, and questions to talk about tomorrow. I think we’ll be discussing my co-infection panel results this time. We only had the preliminary results last month, and my LLMD wanted to refer with another doctor in-state about my results.

I’m a little frustrated because I’m seeing a pattern in my symptoms and some of those that I thought were gone for good, seem to be back. I’ve had 3 migraines in the past month. Those have been gone for months! We thought that they were being caused by the gluten in my diet because almost as soon as I went gluten-free they began to decrease. Why are they back?

And, true to my yearly patterns my winter air hunger is back with a vengeance. Yuck. My pulse has been so fast that some nights it’s hard to fall asleep. And my hands are so sore that I can barely write a lesson’s worth of math notes. My teachers are so understanding, but you try explaining brain fog to them. It’s hard! Especially when you’re experiencing said brain fog at the time!

Of course, this pain and soreness can be partially blamed on the weather. Did you know, that it has SNOWED here in Minneapolis? Yes. Inches of snow on October 12th. I don’t remember it being this cold and white this early! {But then, I try not to rely on my memory…} This feels truly bizarre. I love snow as much as anyone, but what happened to fall? Just wondering, since last week I announced that it was “officially here”.

 

Wish me luck tomorrow!

Peace and healing, molly

 

“Kindness is like snow – it beautifies everything it covers”

Oh my. It’s almost unnerving to be sitting here thinking about what to write. It’s been so long, it almost feels as if I’ve kept things from you. How deceitful of me! {grin. Me, deceitful? What?} Know that it’s nothing personal. I’m not on a blogging strike, nor am I intentionally ignoring my lovely blog in favor of Twitter.

It can all be summed up to one word. Just one – Fatigue. Yep, the never-ending complete and utter physical exhaustion that is almost impossible to explain to anyone who hasn’t experienced it. “Fatigue? Oh, so you’re just tired right?” Yeah. Sure. Think being driven over a few times by a semi, right after getting the wind knocked out of you by a really fast and invisible soccer ball only to find out that you have the flu on top of it all. Yes, that right, the flu. And now you’re absolutely parched but you’re just so tired that it doesn’t feel worth it to reach across the table for your glass of water. Maybe just thinking about drinking will deliver that punch of H2O to all those cells that need it. No? Oh well, it doesn’t matter really. Chances are I’d forget about why I was supposed to be thinking about it anyway.

Needlessly I feel the need to explain that I’m not just tired. I’m wiped out. Drained. Of late, I’m even too exhausted to correct the people who assume that I’m simply tired.

I’ve also been herxing on and off for the past few weeks. A few good days here and there, but overall I’ve just felt “off”. Something doesn’t feel right. All the dots aren’t connected in my connect the numbers picture. Doing homework is hard, and that’s coming from a girl who actually enjoys doing homework. I know, it’s weird, but something about having it taken away from me when all I wanted was to be well again and go back to school just makes it mean something. It’s an accomplishment. And, I do take pride in what I complete and turn in. But lately, I’m falling behind. My to-do lists are longer at the end of the day than when I started. Somehow, that doesn’t seem very productive!

My mind feels like sludge. Every single joint in my body aches. It’s as if I’m stuck in sand, trying to climb out. Or maybe it’s more like the creaky Tin Man in the Wizard of Oz before Dorothy oils his joints. I’m not sleeping well. And my poor stomach still isn’t happy!

Yes, my friends this all points towards the inevitable. It’s Fall. My dreaded season. Everything gets worse from now until February. Fall and Winter are my worst months; I spent the rest of the year recovering from them and preparing for them to happen all over again. At least, that’s what it feels like.

Fall is here. If it wasn’t below 40 degrees outside and almost midnight I’d scream it. Maybe not from a rooftop, but I’d scream it all the same.

And yet, as each day that becomes more and more apparent, I’m trying to stay hopeful. This year might be different. This year I might break that pattern. This year is the first Fall/Winter that I’ll be treating the Lyme and other various infections beating the crap out of my body! Yay for that!

So, on that positive note I’ll leave you for the night.

Peace, healing, and sweet dreams, molly

 

“Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” ~ Bill Cosby

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