What is this Fitbit thing??

Many of you have seen me post extensively about Fitbit and have asked "what is a Fitbit?" and "do I find it beneficial?"
My answer is a resounding YES!

Many people are hesitant to spend money on a gadget and to compete with their friends when they have such a sedentary life. What people who are just joining us on the Fitbit bandwagon don't know: when Jeff and I first got our Fitbits, we barely got 5000 steps a day (Fitbit sets the initial goal as 10,000 a day). But what it has done for us is it has motivated us to cleverly find space in our day for walking more. i.e. parking further from the door at the grocery store or Jeff paces the hallway while reading his Kindle. And I know for a fact that when I don't have my Fitbit, I get lazy. It helps keep you honest. I am so very competitive (particularly with my husband Jeff) so we are able to push each other without nagging.

Some folks aren't certain if the competitive aspect will be good for them or damaging to their ego. A friend confessed, "what I do know is that when I fail privately I tend to give in to despair and quit. Quitting is particularly easy if no one notices." This is where Fitbit becomes particularly helpful. Your friends are able to cheer you on, (hopefully lovingly) taunt you, and send you messages of encouragement. Usually it's not necessarily cutthroat competition... unless it's between my brother-in-law David and I, in which case we tend to battle to the death. Ok, it's more like loving pokes.

Many friends have asked if my health outcomes have changed since I began? I have gotten so much stronger and have greater endurance since getting it. Before getting my Fitbit, I was barely able to walk the dog around the parking lot. Now I am able to walk all around my neighborhood! My sister-in-law, Sheri, has experienced similar results. That is not to say that we don't still have our bad days, due to our health, but we are getting through them more easily the stronger we get! 

Another question was "was your motivation weight, health, looking fine in your bikini, or...???" My primary motivation was getting strong in my post-Lyme life, however we purchased our Fitbits six months prior to our beach wedding, so I would be lying if I didn't include that as part of my motivation.

Having a Fitbit helps to change your behavior radically, which can be a very difficult thing to do. Since I've gotten mine, I've had some crappy weeks, sometimes from Lyme or sometimes because I'm swamped with schoolwork. But I continue to try to find ways to fit more walking into each day, thereby regaining some of the strength that Lyme stole from me.

Additionally, it has a journal section where I can record symptoms or events from the day (good and bad) to help track my Lyme journey. This is particularly helpful since I have "Lyme brain" and can't always keep track of it myself. It also has graphs to track trends: sleep, weight, activity, etc. My Lyme doctor finds this helpful in our monthly appointments.

 Caveat: Fitbits are incredibly easy to lose! Be prepared to be extra vigilant. I have gone through five so far (lost 1, wore 2 different ones into salt water, gave one to a friend who promptly lost it, and one of the replacements was defective) and I STILL think they are worth every penny! 

The metaphor of the walking mandala

Today was the first beautiful weather day in what feels like forever. I moved to Atlanta with the hopes of escaping weather that increases my Lyme related pain but my hopes have been dashed this particular winter. As I try to not squander an opportunity, I chose to take some time for myself and walk the mandala behind my health practitioner’s office. It occurs to me that the process of walking a labyrinth is a great metaphor for life:

We go out to go in and in to go out, backwards to go forwards.
 We follow a path, walking on blue slate chips which can be warm in the sun or cool in the shade. If we choose to walk on them barefoot, they can be smooth and pleasing or jagged and even painful.
 Alternatively, we can protect ourselves (via shoes). You go all the way in to (pause and then) turn around and go out the very same way, yet the scenery looks quite different on the way out. Things change depending on your perspective: you might not see the dragonfly on the blue globe close up but it was so easy to spot from a distance.
 

We can take time to smell the sweet flowers. We can choose to follow etiquette but shouln't be afraid to break it either.
 Mindfulness of the moment, yet clarity of past and future.
 Remember to have joy in the moment- never take yourself too seriously. Stop and observe the flora & fauna, but be careful to not disturb them. It's the relation between stillness and movement.
 

“Labyrinths are one of the oldest transformational tools known to mankind. They have been used for centuries for prayer, ritual, initiation, and personal and spiritual growth. Unlike a maze, a labyrinth is unicursal- only one way to the center and back out again. Once you set your foot on the path, you are gently guided to the center of the labyrinth and yourself. There are no obstacles, no dead ends, and no tricks. So- with the labyrinth walker it is a meditative process- the mind can be stilled and attention paid to the body. It is a time of being rather than doing. Labyrinths also help us access our intuition and creativity, integrate body and spirit, listen to our heart, connect to the greater universal flow of energy, and deepen our spirituality.” (HealthSpring Holistic Center)

The Greatest Birthday Gift to Myself, Ever!

When I first started at Candler, I was barely able to make it from the parking lot to the classroom and only rarely had the strength to make it up the stairs to Cannon Chapel. On my 41st birthday I was able to make it from the 4th floor of the Theology building, down the stairs, through campus, all the way to Emory Village to pick up lunch... and back... in under 30 minutes! I could not ask for a better birthday gift to myself!!

I have come a long way since I first fell ill with Lyme disease: rebuilding my life from being bedridden and abandoned to a new life that includes graduate school and love. I worked very hard to get to this place and must continue in my vigilance. Through all the tears and pain, I persevered. I will continue to persevere with love, strength, and gratitude bolstering me.

Lyme and a career path?

If all goes as planned, a year from now I will be done with school and will being working, hopefully full-time. This prospect scares the crap out of me. Not because work scares me but because my Lyme scares me. I do not make commitments that I can't keep. This makes committing to a full time job challenging. What can I do that matches my skill set but allows me flexibility for when my Lyme flares? I am a writer but I need structure, so writing from home would not work... not to mention the fact that I know the likelihood of making a reasonable living writing is as likely as winning the lotto: every one dreams big but few actually win. I could teach but that requires me being able to make it to every class, which we know I am unable to do.

How do other Lymies support themselves? How do you pay your exorbitant medical bills?

The Patient Protection and Affordable Care Act

Our governmental system is flawed. Our founding fathers, in order to prevent tyranny of the majority inadvertently created tyranny of the minority. Because of this, creating bills that can pass congress is a tricky art (and I use the word "tricky" intentionally).

The Patient Protection and Affordable Care Act or "Obamacare", as it is affectionately known, it not a good bill. It began as a great bill but in the process of adjusting it so that it could pass congress this great bill was chipped away to a pile of rubble that barely resembles the original idea. That being said, a pile of rubble is better than nothing. At least with a pile of rubble we have our foot in the door and have set a precedent. If we have nothing, well then, we have nothing.

I have Lyme disease. I was diagnosed with it in 2007. Luckily I was married to a man who owned his own business and we had great health insurance. In a stroke of bad luck for me, in 2008 my husband cheated on me. I almost had to stay married to him inorder to maintain coverage for fear of being denied due to a pre-existing condition. I reiterate: I almost had to stay married to a man who abandoned me while I was sick in order for me to keep health insurance! If it were not for the changes put in place by Obamacare, I would be trapped. That or bankrupt, which would be a much larger burden on society than PPACA.

I look forward to our elected leaders adjusting the Act so that it returns to its originally intended greatness. I pray that it is not repealed, for if it is, I do not know what would happen to me. In my opinion the best way forward is adjusting the current Act and not repealing its flawed form and starting from scratch, for I fear that if it is repealed, Big Money will prevent another bill from passing Congress.

Squirrel Hunting?

I live in a condominium complex within the Atlanta city limits. It seems recently that our squirrel population has exploded. Where I'm from in Maryland, we have foot Basseting/ Beagling, which is the sport of hunting hare on foot with a pack of hounds. I propose that we organise all the neighborhood dogs and start to hunt squirrel.

Preposterous you say? I say nay. I have heard that squirrel is good eating, similar to rabbit (hossenfeffer). I just read an article that squirrels are now likely assisting in the spread of Lyme disease. Not to mention that they taunt my poor dog, smack talking him, just out of reach.

Tally Ho!

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.

I'm back!

It’s been over a year since I posted last. It’s been a bit of a rough year- mainly it’s a Lyme thing. Stupid Lyme.

A year and a half ago I fell ill with pneumonia (due to my suppressed immune system because of the Lyme) and as it turns out, I was likely having micro strokes. I lost some of my ability to read and write, which terrified me. Pre-Lyme, I always felt confident that I would always be able to rely on my intelligence and for that to be taken from me was too scary. Luckily I have an amazing support system. They helped me get through the semester and then helped me figure out the medical support so I could work towards recovery. This Fall I began neural feedback, which has helped tremendously! I have found my cognitive abilities that the Lyme took away from me are beginning to return to their previous strength. I even think that I might end up stronger cognitively because of this process; I don’t expect it but I am hopeful. Another unexpected benefit was the return of my immune system. I always knew that I would be able to “muscle” my way back to strength and stamina, that those were aspects of my overall health that I had some semblance of control over. To have my immune system rebound is truly a miracle!

I began several posts in the last year that I never finished writing or bothered to post. I am resolved to change this. My writing quality may not be what it was previously but I will release attachment to my ego and post. It has been said that something that is 90% perfect and published is better than something that is 100% perfect and not published. Well, you all might have to settle for 75% perfect at this point.

I look forward to actually writing again.

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.

My Lyme Story

People struggle to wrap their brains around my Lyme experience and I struggle with how to explain it without sounding pitiful.

I suspect I had Lyme's for a while before being diagnosed or even falling down ill from it. In the fall of 2006, a doctor thought I might have MS but also ran tests for Lyme; I tested negative for both. In the spring of 2007, I had a boiler room job where I was working 50+ hours a week. I would come home from work and pass out on the bed in my suit only to wake the next morning, change into a clean suit and repeat the process. My husband worried about me but I thought all my co-workers were doing the same thing (it turns out they were speaking in hyperbole, where I was speaking literally.)

I officially fell down ill on June 2, 2007 with flu like symptoms, including high fever and vomiting. From that point, it took them over two months to come up with the Lyme diagnosis. I ran a fever for 28 days straight.

 The story leading up to the diagnosis is long and humorous with the distance of time and includes more blunders than anyone should have to endure. (picture 7.5 hours in the ER, after being removed from D.C.’s Union train station on a stretcher because they convinced me I was having a heart attack, and the only diagnosis the E.R. could come up with was a bladder infection!!) Yes, this gives a good indication of the idiocy I had to deal with.

I spent a year and a half bedridden; when I was finally able to make it beyond the bedroom, we celebrated. During that time I slept 20+ hours a day. I had significant cognitive deficits: I temporarily lost my short-term memory, I lost entire conversations and I wasn’t able to follow a half hour TV program if I hadn’t seen it before. My ability to read, write, or access my long-term memory was hindered. My life is demarcated “pre-Lyme” and “post-Lyme.” Pre-Lyme I was very capable academically, so of all the things Lyme has taken from me, that is one of the hardest. I employed a neuropsychologist to help me figure out how to retrain my brain. The process of regaining access to my memories has been fascinating, though long and inconsistent.

These are my morning pills. I have to repeat the process in the evening.



I believe I have been through a total of 8 different courses of antibiotics (but I have lost count at this point.) My last course of antibiotics (a combo of Biaxin and Plaquenil) lasted for over a year and finished the summer of 2009. Daily I take several medications to assist in pain management in addition to other supplements to help manage the side effects of Post-Lyme Syndrome or the meds. To the right I have included a picture of my morning meds, I take even more in the evening. I battle nausea and other side effects from all these pills.

I believe in combining the best of both Eastern and Western medicine, so I swear by weekly medical massage and acupuncture. I have found that movement is key to reducing pain but I have also noticed that staying strong helps reduce my setbacks. In order to accommodate my unique needs I do private therapeutic yoga multiple times a week and pilates once a week.

I am an equestrian and I find that just sitting on my horse raises my spirits so much and in-turn helps me physically.

 Some days I am a strong and capable rider; other days I grab mane and my trainer leads me around the farm on a pony ride. I think this confuses people- that what I am capable of changes from day to day or week to week. There are so many factors that go into the mix to determine how I feel: the weather tops the list, but also stress, sleep, diet, change in meds, and if I have been pushing myself too much are the primary ones. But true confession: if there is something I have my heart set on doing, I manage to dig down deep and find the strength, however that usually causes me a setback.

There seems to be something about how Lyme affects the hypothalamus because it is common among “Lymies” to be constantly cold. I’m not talking about the “oh wow, I should’ve grabbed a coat” cold; I’m talking about wearing a winter coat, hat and gloves during the summer type of cold. I sleep with an electric blanket most nights, even hot Atlanta summer nights. Days that I feel worn down and in pain, I get particularly cold; they seem to go hand in hand. Of all the things that people don’t understand, this one is the hardest for me, I suspect because it is the hardest to explain.

Pre-Lyme, I went a million miles an hour constantly. A woman speaking about living with chronic pain said that those that live in chronic pain have a limited number of energy marbles, while the rest of the world has a limitless supply. I have had to learn to plan and ration these marbles in my post-Lyme life. I wear down so quickly now. (I find myself chuckling at the irony that my childhood baby-sitters would have loved for me to wear down; lord knows I was constant, boundless exuberance, which was exhausting to those in charge of my care.) Now, I have had to learn to pace myself and be patient with myself, skills I am not known for.

It is my understanding that Lyme's will be with us forever, similar to Shingles. It can flare up in times of stress (just what we need when we're stressed.) But Lymies can do things to help our bodies stay strong and prevent flare ups: eat well, sleep, exercise, be mindful of weather events (cold & wet are hard on me), try to reduce stress events or prepare for them.



With all the terribleness of this disease, I used it as an impetus for positive change. I am currently in my first year at Emory University's Candler School of Theology pursuing my Masters in Theological Studies. I am here because of my Lyme. I was bedridden for a year and a half, suffering mentally, physically and cognitively; I was so close to just giving up. Lyme is rarely fatal, but when you loose so much of your life, the finite nature of our time on this planet comes into stark contrast. So I decided that I was going to fulfill my lifelong dream of studying religion at the graduate level. When I made this decision two years ago, I had no idea how I was going to make it happen but I was determined. (Dr Aucott and I believe that one of my greatest tools in dealing with Lyme is my stubbornness, I am fully using it to my advantage.)
 If Lyme had not forced me to step back from my life, I would not have had the opportunity to follow my dreams. Do I consider getting Lyme disease a blessing? No. But I refuse to give in to this tragedy.

[editors note: I’ve been working on this essay for quite a while now. There is so much more to say. I will continue to work on this and will repost as new versions they develop.]

A Gleeful Day!

Today has been a good day! Starting with the end and working backward: Shayanna threw a wonderful Glee party (I got my Glee cherry popped,) where I finally got to introduce Hannah to my Praxis peeps. I was able to have some quality Hannah time before she leaves to go home for the summer. I got a surprise package containing fabulous looking Smartwool socks and wind chimes from my BFF Bobi. I had a wonderful active yoga session (the first active session since I got pneumonia.) I have released attachment to salvaging this semester. (Pray, but row for the shore.) I thought I had gotten past the cognitive deficits of the Lyme but they seem to have returned when I got pneumonia. I might still be able to save one class but I am working towards not beating myself up if I have to withdraw from all my classes. I am continuing to try to break-through this brain fog- still writing and trying to read. I got an encouraging email from one of my professors. I am still tired and coughing a lot, but I made it to class today! On Thursday I leave to go home to Maryland for my 20^th high school reunion. Now- bed.