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emily and isabelle, originally uploaded by sweet sweet life.

 

I’m working on finishing the update from the appointment with my new LLMD and it’s taking me a lot longer to finish than I had expected. It’s slow going as I’m patient with myself, my memory, and my symptoms.

In the meantime I have two things to share with you. First, this lovely photo I found this morning. I have always loved this poem! It was the inspiration I needed and just the reminder I wanted today; I hope you enjoy it too!

Secondly, I wrote a new piece this week that I’d like to share with you. I like to think of myself as an aspiring writer, but with Lyme I feel that most of my creative writing has gone on the back-burner. I haven’t written a thing resembling poetry, stories, or anything remotely creative in ages. But these words just poured out of me in a way that I was craving. I’d like to invite you to read this.

I’m calling it my break-up letter with Lyme.

Before You Go Away

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

Last spring I celebrated my high school graduation with you. It was a huge accomplishment for me, and your support along the way was amazing! Your support of the blog, of me, and of my story has changed the way I live with Lyme. Truly.

I consider myself one of the lucky ones. I have a treating doctor; I have everything I need to heal – antibiotics, supplements, herbs, family, friends, and the list goes on, and on, and on. What I struggle with is the need for time. Lyme doesn’t follow a schedule. There is no end date, no final deadline. It just is.

This last year has been an exceptionally hard one for my family and I. It feels like blow, after blow has fallen upon us. I won’t go into the details but I’ve been shown how strong my family is. We have hope and we have courage.

They are an inspiration to me. And they are one of the reasons that I have been given the opportunity to take this school year off. I’m taking an entire year and dedicating it to myself. My priority is to heal. I’m giving my body what it’s screaming for – time.

I’m giving myself time when I feel that I need it. I have the luxury to truly listen to my body, and I’m grateful for it.

However I also want to enjoy this time.

I’m marking events on my calendar. I’m teaching preschool. I want to write, to learn, to create. But most of all I want to be happy. I want to look back at this year and not regret my decision to put off my schooling. I want to make this year worth it.

I can’t let it slip through my fingers…

And that leads me to my big announcement!

This month I opened my own Etsy store. I’ve always been creative in one way or another. My passion has been jewelry making. Years ago while I was in middle school I started my own business – I sold the jewelry I made at two local gift shops and my mom toted me and my work to craft fairs. I loved it!

My parents have always supported me, and they taught me that I really can do whatever I set my mind to. Well I figured that if I did it then, I can do it again now, and better!

My new store is called Seeking Serendipity. Please, follow the link and check it out!! Your support will mean the world to me. Keep an eye on the shop – new items will be added as I complete them!

I’m taking a leap of faith…

DSC_0306

… and hoping it works out!

My goal is to offer an opportunity to purchase an upcycled, stylish and completely unique piece of jewelry, handmade by me! I handcraft paper beads out of repurposed papers and seal them with a ton-toxic & water based sealer. My beads are both totally unique and eye-catching! PErfect for an earth-friendly lifestyle.

Looking for one-of-a-kind jewelry this holiday season? My paper bead jewelry could be the answer you’re looking for. Or, maybe you’ll find that perfect gift idea at the Lymenaide Holiday Bazaar! I’ll be joining this event soon – and I’m excited to be involved! Check us all out, and support those in some way connected with Lyme Disease.

Spread the word!

More from me soon,

Peace & healing,

molly

 

“Sometimes you just have to take the leap and build your wings on the way down.” – Kobi Yamada

… 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.”

Some time ago I came across this website, The Lyme Awareness Art Project. It was shortly after I began treatment, and was a bittersweet discovery for me. The website was started by a woman with neurological Lyme Disease herself, who used her art as a way to both give herself something to hold onto during her experiences and as a way to bring attention to the real people behind the disease. It’s expanded now to have a few pages of submitted poetry and artwork by others with Lyme.

 

On the one hand, it helped me to see other people driven towards inspiration and creativity with this debilitating disease. I wasn’t alone. I mean, I knew I wasn’t. But this was like visual proof to me. I’ve found writing and artwork to be a comfort to me during my months of treatment. My creativity seems to be unclogging, to my great relief. But on the other hand finding this website was hard. Many poems were difficult for me to read. They had such anguish and pain in them, understandably. But I wasn’t ready for that.

 

I navigated back to the site every once and a while, but had mostly forgotten about it until last week when I read a posting on a Lyme support group. The member had just submitted some work to the site, and it had been put online. She was so excited! It made me think…. “Wait a minute. I could do that!”.

 

I even had a poem. In January I had written a poem entitled “How It Feels To Be Me…” for my English class. I don’t write poetry very often. I actually find it very difficult to do. I end up feeling rather vulnerable about it in the end. Writing this poem was very freeing to me though. It came flowing out, and it felt so right. And, surprise, surprise it turned out to be about living with my newly diagnosed disease. Perfect for the online gallery, right?

 

So I took the plunge and emailed my submission. I just heard back, it’s been put up online this week! You can find it here:

My Poem

Scroll down to the very bottom of the page, and it’s right in the middle. Read a few others too!

 

I hope you enjoy it. I’ll be posting it here as well. Look for a page soon with some of my writing on it.

 

Peace and healing, molly

 

“Live your daily life in a way that you never lose yourself. When you are carried away with your worries, fears, cravings, anger, and desire, you run away from yourself and you lose yourself. The practice is always to go back to oneself.” –Thich Nhat Hanh

Here are the long-awaited photos and videos from my Charter School Essay Contest award ceremony a few weeks ago. Sorry it’s taken this long to post! So many things have come up, as I’m sure I’ve talked about in the meantime. I hope you enjoy seeing the photos. I had such a wonderful time. I’m so glad I was given the opportunity to be a part of it. I read my essay almost dead last. They started with the kindergarteners and ended with the 3rd place high school students. So I waited for over 2 hours in the sweltering heat on the steps of the MN state capitol listening to others read, seeing dance performances, hearing senate representatives, and even a guest author spoke who spoke to us. Like I said, it was just a great experience. My dad took video of my reading; you’re welcome to take a look if you so dare! Here’s the link: http://ntx.na3.acrobat.com/p24691029/

I’ll post an update about how my LP went and what will be happening next as soon as I can. Stay tooned!

Thanks for looking!

Peace and healing, molly

“Write to be understood, speak to be heard, read to grow…” ~ Lawrence Clark Powell

Have I mentioned I placed in the Minnesota state charter school essay contest? I don’t remember. I very well could have, or I just as likely forgot to. Either way, I did! I’m so proud. I placed second with an opinion essay about my school. I wrote the essay at the last minute at the end of last quarter and honestly forgot all about it. Then a few weeks ago my English teacher called me to share the good news. I was shocked! It’s the second year in a row someone from my school {BlueSky Online Charter School} has placed and they’re ecstatic about it as well.

 

So tomorrow is my big day. Or it’ll at least have a few interesting hours. Tomorrow morning I’ve been invited to read my essay on the steps of the state capital during a charter school event. I’m not sure what else is happening, or what it will all entail. But I’ve been told to bring my essay to read and be prepared to stay for a few hours. Will do.

 

I’m so excited! A bit nervous, but not too much. Although, maybe I should be… I haven’t done any public speaking in a while :)

 

I have a hard time reading a speech, or an essay, because continually moving my head up and down to look from my paper to the crowd causes me a lot of dizziness. I would compensate by memorizing parts of the material, but with my memory slipping more and more each day that’s just not realistic! I haven’t successfully been able to memorize anything since I began middle school. I was lucky just to remember my locker combination every morning last year. Oh well, I’ll do the best I can. That’s all I can ask of myself.

 

I know I’m going to have a great time, but some extra luck sent in my direction wouldn’t be misguided!

Peace and healing, molly

 

“For each petal on the shamrock this brings a wish your way. Good health, good luck, and happiness for today and every day.” ~ Irish Blessing

 

Photo courtesy of Flickr.com

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