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I have a moment, a feeling frozen in my mind. I doubt that it will ever go away. It doesn’t haunt me. It doesn’t affect my daily life. But sometimes a memory will be triggered by the present, and I need to accept that it was part of my journey in order to move on.

I was ten or eleven years old. I’m sitting in a chair in my parent’s bedroom with tears streaming down my face. I remember vividly that I was crying because I was shaking with internal tremors that nobody could see or feel. All I wanted was for somebody to see what I felt. I wanted somebody to tell me that they knew I wasn’t lying or faking to get out of school or to gain attention. At this point I hadn’t been sick for very long (in retrospect) but it felt like it had been forever. I was miserable. I just wanted a doctor to believe me, to help me, to make it stop. Why couldn’t they see it? WHY? Tears spilled from my eyes often during those hard years.

My parents believed me every step of the way. They fought for me. I’m lucky and honest to God, I’m blessed to have them as my parents. They never gave up, and they taught me to fight for myself, my health and my hope.

Nine years later I still have those internal tremors. But as time has passed they’ve progressed. Now I have muscle tremors and spasms that are completely visible. Most days they’re minimal. I can often hide them, or hold my muscles so that they are less noticeable. Ask my best friends or my brothers if they’ve ever seen what I’m talking about and they’ll say “No”. I simply unconsciously hide most of my symptoms around people. I can’t help it.

Yesterday one of my practioners was working with my face and head. Not even five minutes later my eyes, eyebrows, nose, lips, and cheeks were in spasm. They began twitching uncontrollably for the next hour and a half. Soon my arms, shoulders and legs were jerking. The more I tried the relax my face they would act up again. I’d take a deep breath, release, and then a moment later they were back. It’s an odd feeling of vulnerability. I wasn’t afraid to let them happen yesterday, but they were exhausting. I left the appointment completely done-in.

As I lay on the table I was struck with that memory. The odd juxtaposition of my feelings nine years ago with my habit of hiding these tremors today occurred to me. Now I have that vindication. Doctors and those providing care on my medical team do acknowledge that these tremors exist. They are no longer in question. These people believed me and now they can see it with their own eyes. It’s been proven that I was never the young faker trying to gain attention or get out of school. I was a girl who needed help that I didn’t receive until it was long overdue.

So in that light not only do I have feelings of vindication now, but I have a sense of exasperation. I simply shouldn’t have had to wait nine years.

Now my sense of fairness to my younger self is troubling me.

Do I want people to see these tremors? Do I acknowledge her wish? Or do I continue to allow myself to put up a front, a different face now in the present? I don’t know. I almost hesitated to write this post because I don’t know what my final feelings are about this. It’s an internal question that I’m going to have to work out for myself. So if one day you see me and notice these muscle spasms, know that either I’m too ill to control them or, more hopefully, I’m acknowledging that little girl inside me who only wanted to be heard.

 

xo,

molly

I have both exciting and nerve-wracking news share with you! My current LLMD has been recommending that I seek a consult with a more specialized  and experienced LLMD since last winter. We’ve been putting off this move because, quite honestly, the expense of a non-insured LLMD is astronomical. However, my health has been steadily declining since January of this year. In fact, I’d go so far as to say that 2011 has been one of my absolute worst years in the course of my illness. My LLMD has admitted that I’m beyond her abilities at this point.

We took the plunge.

An appointment with a new LLMD was scheduled. The only problem? I was distraught to hear that I wouldn’t be seen until December. I knew I didn’t want to go on living like I have been. I hoped for something – just something – to surface. 

And, here comes the exciting news – it did! This week we received a call saying that if I wished I could take an appointment that was open after a cancelation. We took it!! I see the new LLMD next Wednesday, the 7th of September!!

Please keep me in your thoughts and prayers sending positive, healing vibes for next week’s appointment! I’m hoping to receive some expert guidance and a new treatment protocol.

At the moment I’m feeling overwhelmed with the intense paperwork required, the tests I haven’t had done yet, and the thought that I have a 3 hour appointment ahead of me where my whole story and every single symptom from the last three years will need to be retold and analyzed. I’m excited, nervous, and crossing my fingers that this doctor will finally hold the answer I so desperately need.

I’m taking many, many deep breathes, drinking tea to soothe my stomach and my soul, trying to recapture lost memories, and generally taking this all as it comes. One action, one thought, one moment at a time.

 

With love,

molly

 

“May the pain you have known and the conflict you have experienced give you the strength to walk through life facing each new situation with courage and optimism.”

I love Thanksgiving for so many reasons. It’s filled with great food, family, and with laughter. Memories are bottled up in it. But one of the things I love most is that it’s one of the few days of the year that almost everyone is being thankful at the same time, in the same moment; it makes me feel connected to the world to remember that.

remember, originally uploaded by the notebook doodles.

 

This year was an usual Thanksgiving for my family, but I’m no less grateful for it. It’s around this time of year that I find it easier to accept the blessings in my life. I’m grateful for each day – be it bad, or good. I’m grateful for the family and friends that make those days worth living. I’m grateful to be taking the steps to gain my health back. I’m grateful to have the opportunities to eat good food, drink great tea, and take time away from my life to enjoy the moments as they pass. I’m grateful that I like the person I’ve become, and that I’m not afraid of the future. I’m grateful to have the support I do. I’m just plain grateful!

Let me use this post to scream THANK YOU from the top of my lungs to each and every one of you. I hope your holiday was filled with happiness. You deserve it.

 

In gratitude,

molly

 

I would maintain that thanks are the highest form of thought; and that gratitude is happiness doubled by wonder.                ~G.K. Chesterton

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

Tomorrow is the big day. It’s the day I’ve worked to earn for the past four years, no matter how impossible it felt. Tomorrow I graduate from high school!

I could cry. I honestly, seriously, could cry. I was told two years ago that there was no possible way I would ever be able to catch myself up enough in order to graduate with my class. I wanted to prove to myself that even with my health in the state it was, I wasn’t going to let my life get pulled out from under me.

I needed to prove to myself I could do it. And, I have. I did it. I worked at home with tutors, through summers, and online in order to complete high school and still continue my treatment. I know my family and friends are incredibly proud of me. And I’m genuinely proud of myself.

I couldn’t tell you how I did it. I wish I had a secret to pass on to those others working though high school with chronic illnesses. The last two years are a blur. But tomorrow I’ll don a royal blue cap and gown and walk across that stage. I know I won’t have to remind myself to smile!

I’ll be back with a celebratory post as soon as I can.

Thank you for your continued support; it has meant so much!

 

Peace and healing to all!

molly

 

“Success means having the courage, the determination, and the will to become the person you believe you were meant to be”           – George Sheehan

I’m convinced that life’s pleasures are found in the simple things. A sunrise. A cup of tea. A fresh baked cookie. A hug. A letter in the mail. A new book. A favorite song.
I think you get the idea…
I’m going to (attempt) to begin a new series of posts where I’ll share some of the simple things that get me through my days.
I’ll give you a hint of today’s simple pleasure.
Can you guess?
 

cupcake cups, originally uploaded by maedchenmitherz.

 

Yes. I have one word for you: Cupcakes! This is no laughing matter. Cupcakes are to be taken very, very seriously. Got it? This is important stuff we’re dealing with here!

Or, you can be like me and throw caution to the wind as you dare to enter the world of refined sugar and gluten-free baked treats. Come join me!

I woke up this morning and stifled a groan. I don’t wake up well. At all. My joints feel stiff, my muscles ache, my head is heavy, my eyes are dry and I’m usually starving from not eating much for dinner the night before. I always hate the first steps out of bed that capture the Bartonella pains in the soles of my feet.

I staggered out to the kitchen this morning, and that’s all I remember. Next thing I know I’m cutting a grapefruit, making toast, and spilling peanut butter. Who knows how much time had passed, but I didn’t care. I was hungry for a change. And I was thinking. Today, I would make cupcakes. Yes, it sounded like a wonderful idea!

Lately, I’ve coped with my bad days by spending more time in the kitchen. Whole days have gone by that I’ve accomplished little more than having dinner ready, or planning a new meal, or researching a new ingredient. I can’t seem to sit still, or concentrate on anything.

But cooking makes me happy. I’m creating something with my own two hands to share. It fills a gap in my life that I’d forgotten about until recently. And, for now I can still measure, pour, mix, chop, simmer, and season. My mind can still comprehend recipe instructions. I just can’t always eat. I’m working on that one. Baby steps, baby steps.

So today I made cupcakes!

 

More simple things to come.

Happy cooking, molly

 

Life is really simple, but we insist on making it complicated.

– Confucius

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