Kicking Lyme's Butt and Taking Names

I can't believe how much stronger I've gotten. Last night while walking the dog, it occurred to me that until recently I was unable to to walk down to get the mail- I would have to drive the short distance. Now, I'm walking all over the neighborhood and am even able to do multiple laps!

Five years ago, I was barely able to get myself to the bathroom without assistance. Even as recently as last year, I would need a cane to walk some days. This year, I was able to complete TWO 5k Mud Runs (Dirty Girl Mud Run and Warrior Dash) both in under an hour!! I am in a state of disbelief that I am the same woman.

So many Lymies ask me how I was able to get here. In truth, I have no idea. I think a lot of it is stubbornness. I have also worked hard to assemble a great health support team- a Lyme literate doctor, acupuncturist, massage therapist, chiropractor/ naturopath, therapist, general practitioner, neural feedback- all of whom are willing to work with each other for my benefit. I also practice therapeutic yoga, Pilates, RedCord, ride horses, and have recently added in Kettlebells to my exercise routine. On days that I think I can't move, I know those are the days that I have to move.

When I was working on regaining my strength, I was introduced to a mutual friend who also suffered from Lyme but was able to return to running marathons. I was in awe. I had no idea how she was able to do it, but I figured that if she could do it, I could too!

If you are reading this and are a fellow Lymie, please know that there is hope, do not give up. If you are reading this because you have someone in your life who suffers from Lyme, please do not wave my story in their face, this does not help. We each recover at our own pace, in our own way. If you have recently experienced a set back, know that it is only temporary and we each will continue to fight- for that is our only option.

The Spread of Lyme? [Updated]

Recently, via Social Media, I have been connecting to Lymies worldwide. I was shocked to learn that Lyme has spread to Holland, Germany, even Russia! Now I am not a doctor or a Public Health specialist, but I do have some degree of critical thinking and I can’t help but wonder how this is possible. My understanding of the current model of the spread of infection is via the Deer Tick (also known as the Blacklegged Tick or Ixodes scapularis or Ixodes pacificus) and wildlife (such as deer, squirrels, etc). There becomes a self perpetuating cycle of the tick getting Lyme from the animal and the infected tick then spreading it to other animals (even domesticated cats or dogs). [This can be seen on the CDC website.]

Even with this cycle continuing to compound without any intervention, I am at a loss to see how it is able to spread as rapidly and as far-reaching as it currently is. To take a facetious view of it: it’s not as if deer are hitching a ride on steamers from the U.S. to Europe. Ok, that’s flippant, but even with people bringing infected pets to Europe, it seems that the model above is too simplistic to explain the rapid spread worldwide.

So how is Lyme spreading so rapidly? I don’t have the answers but I sure would love for someone to come up a reasonable explanation because the one we currently have does not work for me.

UPDATED July 8:
After seeing my LLMD last week, he informed me that Lyme has actually been around for centuries. During the Iceman autopsy, they discovered two strains of DNA, the first being his and the second being Lyme. While reading up on the subject, I also found this article: Lyme Disease Bacterium Came From Europe Before Ice Age. So while there is conflicting data regarding the modes of transmission, the fact that it already existed in Eurasia for centuries explains my observations. 

We all feel unattractive at times

I am suffering from body dysmorphia lately. I knew it would happen. A year and a half ago, I was down to 103 pounds and was almost solid muscle due to complications from Lyme Disease- I was vomiting and convulsing in pain almost constantly, which, as it turns out, really builds up muscle. I had the “best body” I have ever had; I put best body in quotes because that is based on our unhealthy, media influenced American standards. Once I got healthier (vis a vis Lyme) recovered from the nausea and was able to eat again, I began to get back to a healthier body type. As I gained weight, I was very conscience to keep saying affirmations that I was beautiful, that growing out of a size 0 is healthy. I knew moving from a media driven “ideal type” to a healthy ideal would be hard on me psychologically but with my conscience effort, my self perception didn’t spin out of control.

I then contracted a respiratory infection and wasn’t able to work out for a few weeks. I also got in a relationship. Before I knew it, I was up to 132 pounds. I found myself growing from a size 2/4 to a 4/6 to a 6/8 and I now find myself no longer fitting in my size 8s and having to purchase size 10s. Per our Wii Fit, I still have a healthy BMI, although just barely. I am 5’2” with a thin frame, so I am definitely heavier than I should be; I most definitely shouldn’t gain any more weight. But here’s the thing that strikes me: I shouldn’t feel as hideous as I feel. I really noticed this when looking at photos from graduation this year and cringing at how much weight I had gained. I went back and looked at last year’s graduation pictures (the ones where I, ironically, thought I was fat) and I saw how I was too skinny then. I went back to the current pics and forced myself to see myself as normal and healthy. I looked at pictures of other women (who I consider beautiful) who are of a similar body type to me. I realized that I look no different from them; it is merely my own negative self-perception that is different.

 

I know that I am not the only woman who feels this way. I am here to say: you are not alone. I will continue to work to see myself as beautiful, no matter what my body looks like. I will also continue to work out and will try to eat healthier (much easier said than done for me). I want to be strong enough to conquer Lyme and everything beyond that is gravy. (And while I must force myself to say this) I am beautiful as I am, this day. I know that I will eventually learn to believe myself when I say it.

I am beautiful as I am.

How far we come in a year.

It was this week a year ago that I was in a self imposed hell—swept away in an abusive relationship that I refused to find the strength to leave… until it was almost too late. Everyone around me could see the abyss I was heading towards but I refused to listen to their sage advice; instead I allowed myself to be controlled as if he were Orpheus, playing the strings of my emotions. Mindlessly I followed him as he pushed and pulled me, this way and that, almost as if he was trying the limits of cruelty I would withstand.

When he tried to rape me, I was able to fight him off and he then broke up with me. I was crushed but somewhere from the bottom of the wreckage, I screamed, “No more! Never again.” He didn’t believe me and continued to try to draw me back into his abusive games, but with the strength loaned to me from my support system, I found the strength to resist.

I spent months healing, protecting myself, and fighting to prevent this from happening to anyone else. Then, when I least expected it, I found healthy love—possibly for the first time in my life. I went from the lowest point in human relations to where I am growing and becoming better at communication, giving/accepting support, and trust.

Would I choose to go through that again? No, but I receive solace knowing how I turned it around to make myself a better person and to help others.

My gratitude abounds!

My story from last year: Standing Tall as a Victim

I miss the woman I used to be.

Today is the last day of Lyme Awareness Month and I find myself struggling.

I miss who I was and I struggle to accept that she may never return. I used to bounce, constantly. I had a bottomless well of energy. I was constantly social, always connecting with others. Now even bouncing wears me down. I wouldn’t label myself anti-social, but I no longer make and maintain connections like I used to.

One of the things that hurts my heart the most is that I am not able to be there for my friends like I used to. Supporting the ones I love has always been so important to me. I missed my friend’s bachelorette party (that I helped plan) because of herx reactions. I will miss another friend’s wedding because I don’t have the energy to get there and back. Even just reaching out and being a friend is difficult for me.

I miss being academically gifted. I hate suffering from dysnomia (the inability to recall the correct word from memory.) I am a concise writer and select each word carefully; due to the dysnomia, I will search for the word I want for 20 minutes or more. (ok, I’m also neurotic.) I’ve also noticed that I struggle to pronounce words, which I wonder if that is a similar neurologic process. When talking, I may say what I am thinking but random, incorrect things might come out of my mouth instead. Sometimes I am able to catch my errors but sometimes not. It’s even harder for me to write my thoughts. I am blessed that a friend has volunteered to take dictation for me so that I can finish up my summer semester. I know that I should be careful what I wish for but I almost wish that I wasn’t able to recognize the cognitive changes; I find myself longing for the bliss that ignorance bestows.

In a backwards sort of way I was blessed when twice I considered just giving up. Each time I was presented with an easy way out: the first time I was swimming and ran out of energy; I looked around to find the pool edge to grasp and realized I was in the middle of the deep end. I knew that I could have just allowed myself to drown and I would be released from my suffering. However, I chose life. I kept my lungs inflated, did a deadman’s float and waited until I floated close enough to grab the pool edge. The second time was a couple months ago while I was struggling with pneumonia and was in so much pain I wondered if I could continue to bear it. While swallowing my joint supplement pills, they lodged sideways in my throat. A couple months prior to this a dear friend had choked and died suddenly, so I knew how dire my predicament was. I knew that I could panic and allow my throat to close and that would be it, the end. Once again, I chose life. I remained calm, continued to breathe, and waited for the pills to dissolve and pass through to my stomach. It took a few hours but it was worth it. My doctors say that I have too much life left in me to give up yet.

The fact is that the past is gone. What was cannot be retrieved, so I must figure out how to work with what I have now. I must love who I am now, learn patience and acceptance. I just really miss her.

Fortezza, Umilitade, e Largo Core - Courage, Humility, and Largeness of Heart

I spent five years in a private girls boarding school whose motto is: Fortezza, Umilitade, e Largo Core - Courage, Humility, and Largeness of Heart. During my misspent youth, I did not embrace this idea fully but it planted itself deeply in me and began to germinate, waiting for the right moment to sprout.

I was at Oldfields School during my formative years (8- 12 grade.) I was not always happy there and for years after I did not look back at it fondly. As my 20 year reunion approaches and I am reconnecting with school mates (particularly via Facebook) my self-imposed wounds are healing. In their place I am finding gratitude. Though I resisted at the time, I was given so many wonderful tools, which I use so often now. The greatest of these is our school motto, which I endeavor to live up to everyday.

Thank you for all you have given me.