Well folks, my face is still twitching away. However, thankfully we seem to have tracked the problem down. First my physical therapist drew attention to my nervous system, then my local MD traced it to an adverse medication reaction which was the root cause of the nervous system being in the state it’s in, and then finally an emergency phone consult with my LLMD who (I’m grateful) agreed with the theories and decided on a plan of action. I love it when my practioners all work together. This sense of synergy really benefits the patient!

So this week I’m working on getting these symptoms calmed down. I really couldn’t continue to function in the state I was/am in; it’s just too much. I felt that I was continuously holding back the floodgates. Any time I relax my muscles, especially those in my face, the spasms start. Every. Single. Time. I’m so tense right now it’s ridiculous.

When my muscles start going it starts in my eyes. They begin to flutter. Then my right eyebrow and surrounding muscles start. It moves next to my right eye, then down to my lips. Usually last to hit is my nose. It twitches back and forth and every time it does all I can think of is Bewitched!

Wouldn’t it be fantastic if I could make some magic happen in this scenario?

I’ve always wanted to be able to twitch my nose like Samantha and clean up a mess, or find a lost object. Maybe I’d magically fill my pill containers or change the flavor of my Mepron. The list of things a girl with Lyme could do if she could “twitch” her nose with magic is endless!

The mind boggles.

I could make the battery on my kindle last longer, bring something I’d forgotten in another room right to my lap, turn off the lights off when they trigger my headaches, make my favorite movie play on tv, have the dishes clean themselves, or simply just twitch up a cup of tea when I’m feeling like a cuppa.

Endless, the list is endless I tell you!

What would you do if you could magically “twitch” your nose Samantha style?

My mom and I were discussing this in the car today. Suddenly we realized… if I could “twitch”, then I could call up Dr. Bombay!

Remember how to do it? A witch simply had to call out:

“Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!”

And magically Dr. Bombay would appear in a cloud of smoke right then and there. He’d be dressed in an outrageous outfit and be understandably miffed from being dragged away from whatever it was he had been doing at the time – usually his nurse.

But then he’d pull out the professional stoppers and get right down to business. The quicker the better, so he could get back to that nurse.

He’d listen to the problem and pull out some magical, mysterious witchdoctor examination tool. Wasn’t there a keyboard he played that did something?

Before long he’d know exactly what the problem was and how to fix it! I think my chances to be cured would be much improved with Dr. Bombay! He’s got magic on his side. Centuries and centuries of wisdom. And a small flair for the dramatic.

I’d much rather have Dr. Bombay consult on my case than Dr. House (as much as I loved him) any day!

Only it was never really that simple… more often than not he required some hard to find ingredients to cure the illness. There was a sleazy witch apothecary who sold potions and ingredients. Or there was always the chance that somebody would need to go back to the 16th century or something in order to get an ingredient like the tail feather of a dodo bird.

Somebody would need to go off in search of the ingredients while the sick person waited at home, and hopefully didn’t get worse. Dr. Bombay would disappear, only to be called back when all the ingredients were gotten.

My mom has volunteered to go off on the quest in search of the hard to find, magical ingredients to cure me! She’s prepared to battle a dodo bird for it’s tail feather or blend into the king’s court in the 16th century.

What a mom!

Now I just need to get the ball rolling… next time the muscle spasms come on I’m hoping not just for a twitch, but I want a “twitch”.

And you better bet I’ll be thinking, “Calling Dr. Bombay! Calling Dr. Bombay, Emergency! Come right away!” .

All my love,

molly

The chaos of my life is channeled in the kitchen. I pour and I mix. I measure and I eyeball. I trust. I challenge. Not everything turns out, but I enjoy the journey.

I adore food and cooking. I find cooking & baking for food allergies to be a challenge that I relish. Here’s a few quick photos of what I’ve been playing with recently.

Blueberry Almond Oatmeal Cake 

Blueberry Almond Oatmeal Breakfast Cake

 

IMG_0877

 

 

 

 

 

 

 

   German Chocolate Cupcakes

 

 

I wish I had more photos, but usually I forget! Recently I’ve also made and absolutely enjoyed this watermelon salad, potato mac salad, onion hash w/ added fresh chives, apple cinnamon jicama breakfast porridge, I fell in love with this simple, yet filling spring vegetable stew w/ pistou, these thumbprint cookies deserve their awe-inspiring title, this chocochia “milkshake” hit the spot, baked donuts, and rosemary & olive savory scones

People often ask me about my diet. My biggest pet peeve? Please, please don’t ask me “What DO you eat?” or “What’s left to eat?” after I tell you about my diet. I take it seriously, and you making a joke about it won’t help.

It’s intense, but perfectly do-able. I’m eating better now that I ever have! It’s a joy to eat real, whole foods.

My diet is as organic as possible since I have an inability on the DNA level to detox chemicals well. I no longer eat gluten, dairy, soy, corn, processed sugars, chicken or eggs. I joke around that I’m a meat-eating vegan, since I am a vegan baker. I use stevia, raw honey, pure maple syrup, dates & very rarely coconut sugar as sweeteners in my cooking and baking.

It’s been a long, tough road but I love my diet. Some days I’m frustrated and tired of it all. I’ve fallen to the kitchen floor in frustration some nights while trying to find dinner. It is very hard to stay on top of, but I know that it has made a huge impact on my daily life and my health. I feel better. I feel much, much worse if I cheat and eat something I’m intolerant to. It’s as simple as that. Period.

More food talk to come!

Happy eating :)

 

molly

 

“The only real stumbling block is fear of failure. In cooking you’ve got to have a what-the-hell attitude.”

Julia Child

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

Recently I’ve been wondering how to accept the time I’ve lost. The years of college and experiences I’ve missed. Then I remember that every single thing I’ve done and gone through in the past has helped shape and mold me into the person I am today.

And you know what? I like the person I’ve become today. And for that I’m grateful.

This quote resonated with me today. It seemed to answer a small voice in my head that needed to be heard. I hope it helps somebody else today too.

 

Gentle hugs,

molly

Intentions are a powerful thing. This awesome universe that we live in works in mysterious ways. I’ve had this proven to me time and time again. I don’t know why it still surprises me, but it truly does and I’m glad! I want to be surprised by the world we live in. Life wouldn’t be nearly as much fun if it were a series of predicable events.

I wrote on my birthday that I wanted to start living life again. Imagine what the universe threw my way…

I watch more TV than is good for a person. I admit it. One of the shows that my parents and I love is USA’s Fairly Legal. It’s about a woman trying to keep her crazy life together while helping people with their own problems as a mediator for a law firm. At the firm she has an absolutely wonderful & hilarious assistant, named Leo.

I love Leo. I want an assistant like Leo in my life. He could help me manage my dozens of pills each day, make phone calls, help with SSDI paperwork, drive me to appointments and just help keep me sane in an unpredictable life. I could really use a Leo.

But, I don’t have a Leo. So I watch the show and I laugh. The actor who plays Leo is Baron Vaughn. Baron Vaughn happens to also be a comedian. Which, made perfect sense once I found that out! The man has me in stitches on the show, seriously. And those of you who know me personally, yes I do laugh at almost everything and yes I do laugh so hard there are tears present at least once a week, but honestly, this dude is funny!

Friday night after my friends had come and left (more on that later), my parents had gone to bed, and I was wide awake I was on IMDb looking up actors in another USA show, which led me to Wiki, which led me eventually to Fairly Legal and Baron Vaughn and then to his personal website. I have no idea how I leapt from one thing to another to another until I landed where I did, but I believe it was the universe doin’ it’s thing.

Serendipity.

Have you guessed yet what it was the universe threw my way?

Baron Vaughn was in Minneapolis doing a show at a local comedy club the very next night! I couldn’t believe it. It seemed like a cosmic answer to my intention. I wanted to life live a little. Well, I did. Saturday night I found myself dressed in actual clothes instead of sweats and sitting in a club laughing at a wonderful comedian in person instead of in my living room on the TV.

It felt magic.

I laughed so much I was sore afterwards! He has such a wonderful sense of humor. My parents and I were impressed with his intelligent wit. So enjoyable! It was just what I needed. Mom and Dad, I know you’re reading this. Thank you for taking me!

My dad nearly fell out of his chair I believe when he asked from the stage if anyone was following a weird or unusual diet. I laughed, but I didn’t want to try to explain mine! Too complicated. And way too much fodder for him to expound upon! He went into a story about how he was trying to kick sugar and how HARD it is to do. My favorite part of the show!! I could absolutely laugh in understanding, unlike those around me who had no clue for the most part.

Check out his website for videos of him sometime if you need a laugh.

So the universe has proven to me once again that it has a hand in our lives. I’m not saying we have no choice, no free will. No. And I don’t know if I believe in fate or in destiny. I just know that I believe in the power of intentions. I put that wish out into the universe and the universe answered back; it acknowledged it and honored it.

I enjoyed myself in the moment, drinking it all in,  just like I had wished.

What will the universe and I do next? I’m curious! I’m keeping myself open and my intentions out there. Life is a beautiful thing.

 

peace and healing,

molly

 

The goal of life is to make your heartbeat match the beat of the universe, to match your nature with Nature. — Joseph Campbel

 

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

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. 

Purpose

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

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