Lyme Disease Awareness Month

Many people have asked me how they can help raise awareness for Lyme disease. Well, May just so happens to be Lyme Disease Awareness Month! If you're looking for a simple, yet profound way to help, click on any of the Lyme blogs I have linked on the right and leave an encouraging comment to my Lyme sisters and brothers, as you will quickly see that most are struggling to keep their head above water.

Chronic Lyme disease is a very painful disease; so painful, in fact, that the number one cause of death from Lyme disease is suicide! Lyme is a tough battle, and your kind words can help someone more than you could ever imagine!

There are many other ways you can help: you can spread the word by sharing my blog, you could make a donation to my fundraising page for Lyme research or to Columbia University's Lyme and Tick- Borne Diseases Research Center, or you could even join in the fun by turning your Facebook or Myspace profile lime green for the month of May.

Thanks for all of your love and support!

Lyme Warrior

I'm still feeling spectacular, I'm working hard to clean up my diet, and I had an appointment with my favorite doctor yesterday--my LLMD (in Lymespeak that means "Lyme literate medical doctor"). I was so excited for my doctor to see how great I have been feeling, and she was just as happy to see me smiling again! It is so amazing, yet sadly a rarity, to have a doctor who truly cares how you are doing!

As much as I have enjoyed my break, I'm back on antibiotics today. I started a new antibiotic this morning, along with an old one. If I do okay with the new medicine, then in a week I will be adding in the same antibiotic that caused such a vicious Herx early in my treatment that I dropped down to 100lbs. It made me so weak that I had to stop treatment for a few months until my body was strong enough to try again with a different medicine.

I have had such a wonderful string of days and I've gotten so many things done around the house that I'm over the moon! I am much stronger physically and mentally than when I took the dreaded medicine the first time. After the last treatment cycle, I feel like I was inducted into the badass hall of fame (not to toot my own horn or anything; I just can't believe I survived that!), and I learned the hard way how true that old quote is, "You never know how strong you are, until being strong is the only option."

My goal is to knock the pants off of my Lyme disease and co-infections. That's what I've been fighting so hard for, and I'm not about to stop now! But, that means I have to trade in my good days for Herxing. I am hopeful that it won't last very long or be more than I can handle. I am hopeful that I will be rewarded with more and more good days.

Even though I've been feeling wonderful, I still have a lot of symptoms, and by no means am I cured. If my memory serves me correctly (and if you know me, then you probably just snorted your orange juice out your nose at that thought!), the goal is to be symptom free for at least two months before you can stop treatment.

So, I'm climbing back onto the Lyme carousel, ready for another adventure in Lymeland. Watch out Lyme disease--I am strong, I am brave, and I am a Lyme warrior! Rooooooooar!!!!

I Can Haz Diet Fail

Last weekend, my husband celebrated a milestone birthday and we also celebrated 10 years of bliss (read: not killing each other!) together. There was cake--yummy, ooey, gooey chocolatey cake--which kick-started me on a downward spiral involving all sorts of deliciously wonderful foods excluded in the (barbaric!) Lyme disease diet.

Gluten, dairy, and sugar--so tasty, but so bad for people like me who have Lyme disease. My stomach is a mess, my joints are a mess, my skin is a mess--my body is screaming its unhappiness with my dietary choices. Yet, I just can't stop!!

You may be wondering why anyone would torture themselves with such a restrictive diet. At first, I wanted nothing to do with it, because I felt like I'd given up enough in my life to Lyme disease, but eventually I got desperate enough to give it a go and I noticed a huge improvement.

I, Alyson, the girl who once had a creation named after me at the local ice cream store, am extremely lactose intolerant (I was told that on of a scale of 1 to 10, I am a 10, the worst, on severity). And then there's gluten--gluten increases inflammation, and when I eat foods that contain it, my fingers swell up, my joints hurt (worse than normal), and wearing my wedding ring is a very bad idea. I've written a few times about my sugar addiction. (Hello, my name is Alyson and I've been a sugar addict for over a thousand years!)

Trying to stick to this diet is extremely important for my recovery. It is one of the few things that I actually have control over in regards to this crazy disease. It is one of the best ways that I can thank my body for all it does for me. But, did I mention that I can't stop?! Did I mention that I prefer to thank my body with special treats like Ben and Jerry's Cookie Dough Ice Cream (in those oh-so-cute little containers that make my petite self feel like a giant!)?

Tuesday, I start back up on antibiotics, so this crazy sugar binge/diet fail that I've been on has to stop. However, with an impending visit to my house from the Easter Bunny (for my kids, not me--I swear!), there's a slight problem: Cadbury Eggs, chocolate bunnies, candy, candy, and more candy! Remember when I said my diet was one of the few things that I actually have control over regarding Lyme disease? Well, I lied! I really like candy and pizza and cheese and bread and....

Happy Dance

I am excited to report that I've had a few good days--really, really good days! This is what I have been fighting for! May these good days give me the hope and strength that I need to keep on fighting my fight against Lyme disease! I'm still pretty early on in treatment and I have a long way to go, but now that the dust is settling from the effects of my last medicine, I'm hoping this is going to stick around.

Here is what is going on in my body today:

My energy level may have exceeded my personal best Lyme-disease-energy-record-high (which is really not that difficult, actually). I've been cleaning, cleaning, cleaning and I feel like June Cleaver! There are so many things that I've had to let go around the house that have been driving me crazy, and I've been running around today like a mad woman trying to check off as many things on my to do list as I can before I either have a big Lyme crash, or before I start my new treatment round next week.

My pain level is relatively low today. A "good day" for someone with Lyme disease is much different than what a healthy person is used to. I have body aches--similar to the all-over aches you get when you have the flu. I have joint pain on my left side (Lyme disease is notorious for one-sided pain) in my ankle and in my knee. I was quite ouchy this morning, but I put some Tiger Balm on my joints, which helped considerably.

Mentally, I feel pretty good. I can think clearly; unlike my normal "Lyme brain," which is like trying to wade through a thick pea soup to remind my brain that its job is to function. I'm on cloud nine, because I feel great. I'm a little apprehensive, because it's very difficult to go back to feeling lousy after having a few good days; when you have Lyme disease, you know very well that things can change in the blink of an eye. But, I have no room for negative thoughts today!

What I have learned from Lyme disease is the importance of cherishing each moment--the good and the bad. When you have a chronic illness, you have to learn to love your bad days just as much as the good days, or else you want to become a very bitter person. After having nothing but hard days for a few weeks straight, I am completely overdosing on joy from finally having a few good days! Regardless of what happens tomorrow, or even in an hour, I'm grateful for how I feel right now. Now, if you'll excuse me, I have to go finish doing my happy dance!

Seasons

Winter is finally over! The weather is warming up, flowers are blooming, and spring is in the air. There is one huge problem with this: it is very, very difficult to be sick when the weather is so gorgeous. The seasons are changing, and I want to be doing a million different things, but laid up with Lyme disease, my body is frozen, stuck, in its own twisted version of wintertime.

Enduring the long, cruel months of winter--cold, snowy, and dark--is nothing compared to keeping my body fueled through its own variation of a wintry season. It's been cold and dreary for a long time, though I know it won't last forever. I just have to persevere, despite the fact that there's no calendar for this kind of weather. If I want to make it through this hard season of my life, I have to fuel my body with love, kindness, and encouragement.

Because I don't know when to expect the next season of my life, sometimes the days drag on. It is hard to be sick day after day. I remind myself that this is just one season in my life; only one chapter in my story. I know that one day I will look back on these days, I will know the whole story, and it will all make perfect sense. Some days are easy; some days are not. Some days I see beauty everywhere; some days it slips away, unnoticed.

It is impossible to know when I will be able to plant the seeds that have sprouted in my heart. I am excited for the next season of my life--when my body is healed from Lyme disease and I can plant those seeds and watch my dreams grow into beautiful flowers. I am impatient for the miracle of springtime to happen in my body. There is peace in knowing that this season will not last forever.

"And you would accept the seasons of your heart just as you have always accepted that seasons pass over your fields and you would watch with serenity through the winters of your grief." Kahlil Gibran

Life is Good

I have so much on my mind right now, and, like grains of sand slipping through my fingers, I can already feel the beauty of this day slipping right out of my hands. It is just too lovely of a day, of a life, to let it go to waste. My goal for today is to try to keep my focus on the present moment as often as I can remember to do so--not on my fears, not on my to-do/can't-do list--not on anything but this very moment.

Right now, there is a gentle breeze blowing in the window---the OPEN window! It is 70 degrees outside and sunny. I have on shorts and a t-shirt and I am comfortable (no Lyme chills/Lyme sweats!). I'm savoring a kombucha, which one of my dear friends brought specially for me in a care package. Birds are singing outside of my window. Wind chimes off in the distance are jangling/singing/dancing happily. The smell of flowers is wafting into my room.

Yes, life is hard; life is painful. But life is good and it is beautiful. How easy it is to miss it!

How Are You, REALLY?

A few moments of peace today during a very rough day

What a day it was. My grandmother, my Nana, passed away today and I am utterly exhausted beyond imagination--both physically and mentally--but my brain is demanding that I write to help process things. The past two days, I spent as much time as my body would allow at the hospital with my family. I had to ride in a wheelchair and I was worried about how my family would react to that, because only a handful of people have seen me actually look sick. If I feel that bad, I don't usually go out.

Every week, when I would talk to my grandma on the phone, the first thing she would always ask me was how I was feeling. A few days ago, the last time that we spoke, she said something to me that has stood out in my mind. She asked me how I was feeling, and I auto-piloted, "I'm hanging in there." And she said, "Okay, Alyson...but, how are you, really?" With those four simple words, "how are you, really?" she called my bluff, she showed me just how much she truly cared about me, and she let me know she could handle the truth. That touched me so deeply at the time, and now I will always cherish that moment.

When you have a chronic illness and someone asks you how you are, it is an incredibly difficult question to answer. You have a split second to determine whether or not the person genuinely wants to know, and whether or not they can handle the truth if things aren't going well. What if, like my Nana, we all took the time to ask each other, "How are you, really?"

Smile

 "If you see a friend without a smile, give him one of yours. "

 

One Final Ride

I've been thinking about my horse a lot lately. I never had time to properly grieve her passing, because the timing of her death coincided with the beginning of my Lyme disease treatment. There is something incredibly magic about the bond between a girl and her first horse.

Shiloh was 20 years old when I got her, although the dentist upgraded her to 25 when he took a peek at her teeth. This meant we were the same age! I wanted a kind and gentle older horse to show me the ropes and Shiloh fit the bill. It quickly became apparent to me that she was extremely aloof, which I came to learn is common in older horses, as they've "been there, done that."

Having been begging for a horse since I could talk, I wanted a horse who was as happy to see me as I was to see her. Shiloh, however, was like a stone wall. I know she understood how much I loved her, but she was not one to become excited about anything, especially a human who came to remove her from her food and make her do actual work.

Nevertheless, I had my pony and I was a happy girl. I loved her with every ounce of love I had in my heart, and I know she loved me, too, even though she wasn't one to show it. A handful of  times, she accidentally let a few nickers slip out to let me know that she was at least occasionally happy to see me.

Over the years, there was something that I always wanted to do: climb up on her back and simply lie there while she grazed in her field. I tried several times, but without a mounting block, I was never able to succeed in climbing up. She would patiently stand there while I jumped over and over until I eventually gave up. Occasionally, she would look back at me to let me know that she thought I was crazy.

Around the time when I first started getting sick with early symptoms of Lyme disease, Shiloh started having problems, too. Just like me, my "easy keeper" suddenly had trouble keeping on weight. Her hair started falling out in clumps; mine, too. I developed visual problems; she developed moon blindness, which caused her to lose sight in one eye almost overnight. My anxiety started getting bad; she started getting very jumpy and anxious, too. We kept a close watch on her, making sure she was safe in her pasture and not being picked on.

I will always wonder if Shiloh also contracted Lyme disease. Our symptoms mirrored each other so much that it's definitely possible. Over the years, I pulled two embedded ticks off of her, and I imagine many other ticks finished a full meal and dropped off, unnoticed. All of her symptoms could have been explained away simply as old age, although it seems strange how quickly they overtook her, since she'd always been amazingly healthy and plump for her age.

On the day when I found out that my Lyme test came back positive, I felt so many emotions: fear, relief, uncertainty, etc. So I did what I had done for the past 5 years--I took myself to the barn to find peace. Shiloh was way down the hill when I got there, and I struggled to drag my achy body down the hill so I could sit in the grass near my beloved pony and give my racing mind a rest.

Suddenly, I knew what I had to do! I threw off my boots and my socks and set my camera down in a safe place away from curious noses and hooves. And after 5 years of trying--on a day when I was in so much pain and with tears streaming down my face-- it took me only two tries: my body, as if lifted up by angels, now rested on the back of my aging pony. I don't know how long I laid there on her back embracing my beloved pony in a mammoth hug. It had been my dream for so long!

I gently grabbed a handful of her mane and gave her a tiny squeeze with my calves. I wasn't sure if she would understand what I was asking, but she did. She walked on! We rode through her pasture like that: barefoot, bareback, and bridleless. I've never in my life experienced the joy and peace of that moment. She took me back up the hill to her gate and I was able to steer her to the water trough so I could carefully climb off.

That was to be our last ride together: a few days later she lost the sight in her other eye, and her health rapidly declined. My pony-my wonderful, beautiful, aloof pony--took me on the most incredible, amazing last ride together. There was no doubt in my mind how much she loved me.

Though we didn't have much time together after our final ride, her aloof spell was broken--she whinnied for me when I came to see her (not nickered, mind you!), she wrapped her neck around me in true horsey-hug style, and in the span of a few short weeks, she gave back to me the five years worth of affection I had showered her with over our years together.

When it was time to let her go, I brought her her favorite thing in the whole wide world: Cheese Nips. She greedily gulped down the entire box, and then it was time to say goodbye. I held my pony and covered her with a million tears as she--the greatest pony who ever lived--galloped off with my heart to the great pasture in the sky.

The Courage to be Sick

 "A sacred illness is one that educates us and alters us from the inside out, provides experiences and therefore knowledge that we could not possibly achieve in any other way, and aligns us with a life path that is, ultimately, of benefit to ourselves and those around us."
--Deena Metzger

Not only is there a war going on in my body for my physical health, but also a deep struggle for my mental health--for a better, stronger, healthier way of thinking and truly loving life. What I am seeking is the courage to be sick--to be truly content with a body that is out of control and doesn't cooperate. I am seeking peace, gratefulness, and acceptance of my weak body.

I want to face this day with bravery and confidence and with a good attitude. But, it's as though there's an evil Lyme spirochete sitting on my shoulder, whispering nasty things into my ear so that he and his pals can continue partying hard in my body.

Today is my first day back on antibiotics after taking a medicine break because of last week's mega Herx. Though I am terrified of taking my medicine today, I am working hard to change my focus from fear to gratitude. My goal for today is to focus on how strong my body is, not how weak it may seem to me.

Today, I will work to trust my body. It won't be easy; I haven't bounced back completely from last week's huge Herx, so I'm going ino this treatment weaker than usual. But I will trust my body to do its best to heal itself. I have to get sicker to get better, so today, I will be grateful for the intense battle going on inside of my body that I cannot see. Those feelings of sickness are my body's way of showing me how incredibly hard it is fighting for me.

I'm scared of being so weak. But when I am at my weakest, it is because my body is at its strongest--fighting with every ounce of strength it has! I will work hard to mirror that strength in my soul today as I battle the feelings of total weakness that must overcome my body before I can be well again.

Thursday and Friday

Thursday and Friday were very easily the most difficult two days of my life. Thursday was the day that I added in a massive dose of a new medicine for my Lyme disease co-infection, babesia. My body fought so unbelievably hard and I am so incredibly proud of it. I am speechless at how resilient the human body is.

On Friday, I went through the biggest Herx (when large quantities of toxins are released into the body as bacteria die during antibiotic treatment) that I ever could have imagined possible. There aren't words to describe what I went through. My brain is working in overdrive to process it. This is a wonderful article that explains the Herx reaction that occurs during treatment.

Here is a video of a woman experiencing a very strong herx reaction. Please be warned, it is very hard to watch. I spent all of Friday in a very similar state to the woman in the video, so if you watch it, you can see a snippet of the hell I went through. That's really all I want to say about that...

With each day I get farther away from Thursday and Friday, my body is growing stronger. Lyme disease treatment is a long, slow, intensely painful process. I've still got a very, very long way to go, but I'm confident that this round of treatment will bring me a world of difference!

Thank you so much to all who called, texted, emailed, and prayed for me! I deeply appreciate it!

Exhausted and overwhelmed. Processing all that I've been through in the last few days. Hope to post an update tomorrow. Thanks all for checking in on me and praying for me!