We’re Winning

Those are the words that my LLMD said to me last week. “We’re finally winning.” I can’t even begin to describe what hearing that was like. I heard the words; I smiled. But those fantastic words didn’t sink in right away. I felt… like I was staring down a beautiful cliff, unsure of what I was doing there and what I should be feeling – awe from the spectacular view or fear from being so close to the edge.

I was talking to another Lyme friend of mine recently about how hard it is to trust those words I was told. Here’s a snippet of what I said, “I haven’t ever lost hope of recovery, but somehow this feels different now. It’s not sometime in the future. It’s starting right now. I want to accept that gratefully, but I’m still protecting myself from the possibility I’ll get worse again. It’s a fine line…”.

Like I said, I have never lost hope. I believe that we will all find days of health ahead of us as we recover from these life-altering infections. We will.

However in order to function each day, in order to allow myself to put one step in front of the other, I do have a wall of protection that I keep up. Maybe that’s a good thing, maybe not. I don’t know. But I know that it’s there.

I think it was the day after my appointment that they finally began to sink in. I gleefully told my acupuncturist about it the next morning, and I remember the joy in the conversation. I could feel my face light up. That was the first moment it felt real. I hope I never forget that feeling!

Now I think I’ve accepted the fact that I am actually improving. I’m not feeling much of a change in my symptoms, but I can only hope that soon my body will catch up and give me a much-needed break!

I haven’t blogged much this year. I simply haven’t felt up to it. Computers often make me sick, and my symptoms have truly overwhelmed me in the past few months. However, I’m thrilled to say that this week I’ve felt better. I’ve had more energy, and my mental clarity has felt just a bit sharper. I’m even happier that I’m feeling better today of all days.

Today happens to be my birthday.

I think that feeling the way I do today will be one of the best gifts I’ll receive!

Today I turn 20. Where all the years have gone, I have no idea. I wish I could have a few of them back! I feel older than my age, not surprisingly. But I’m so glad that in reality I am just 20 and not 83 – like I feel many days. My wish this year is that I’ll finally be feeling well enough to live a little. I have dreams and adventures, things to do and places to see! I’d like to start crossing things off my bucket list! If today is an example of the year ahead… I think my wish will be coming true : )

Another phrase my LLMD said to me in my appointment has stuck with me also. She said, “You’re doing amazing.” Imagine that… I’m doing amazing! I think she was as surprised as I am.

I’d like to celebrate my new year each amazing moment at a time. I’m going to savor them.

 

Peace and healing,

molly

Purpose.

Another Lyme friend of mine shared this photo on Facebook, and I immediately sat back in my chair as a wave of understanding rolled over me. Every sane human being is searching at one point or another in their lives for something that speaks to their soul as a purpose. There’s such a deep meaning to that word. Purpose. It’s daunting. More than that though – it’s hopeful. 

I feel that those of us who are chronically ill must intrinsically look to the concept of purpose differently than others at times. 

I don’t know about you, but my purpose at this point in my life, in my own unique journey, is to fight for a healthier me. I wake up every day with the intention to help my body win this fight. Medications, nutritious foods, healing energy, positive affirmations and laughter are all tools in my arsenal.

One day my purpose will change. I will be a healthier me and I’ll be ready to take the next step in my life. But today? I did have a rough morning. As I place my hand over my heart I feel my hopes and dreams surging through my body. I feel the life I have in me. I feel the purpose. I am the purpose. And I’m not giving up.

 

peace & healing,

molly

Hope.

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

One action, one thought, one moment at a time.

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.”

Two thoughts forgotten, one remembered.

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

Taking a Leap (of Faith)

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…

… 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

Finished.

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