24 Months... and Counting

HAPPY ANNIVERSARY TO ME?

November 25, 2011 is the day I started taking antibiotics for my Lyme disease treatment. About two months later I was told by my doctor that my treatment would last six months to a year. Having been treated for a month during my first bout with Lyme disease in the mid-nineties, I thought my doctor’s estimate was outrageous. November 25, 2013 has come and gone. I am still in treatment for Lyme disease.

If you are new to this blog, reading from the beginning to present will bring you up to speed on my battle with Lyme disease. I have been discussing my personal experience along with how the debate over Lyme disease testing, whether it can be chronic or not and the treatment have affected/ been affecting me.

DID YOU KNOW?

There is an anti-malarial medication called Coartem that has been in high demand in the United States. Occasionally it takes a few days for prescriptions to be filled because it is not always available. You are probably wondering how there could be a shortage of an antibiotic for malaria in the United States and why I know this fact. Coartem has been yielding great results in battling Babesia, one of the other tick-borne illnesses I have. I have been taking it since September. The great thing about Coartem is that is reacts badly with 4 of the other 5 antibiotics and one of the supplements I am currently taking. Every fourth week I get to change up my medication and supplement regimen so I can take the Coartem without causing harm to my body. You’re probably already thinking that my two plus years of taking multiple antibiotics for my Lyme disease treatment is causing me harm already...

YOU’RE TO YOUNG FOR MENOPAUSE

I had an appointment with my doctor in mid-November and I mentioned to him that I was having trouble regulating my body temperature. He made a note of it in my file and also told me that in my latest round of blood work one of the numbers for my thyroid function was off.

Since mid-November my body temperature regulation issue has become much worse. When I go to bed at night I am cold. Cold as in shivering and full of goose bumps. I put on many layers before bed. When I wake up in the morning I am drenched in a cold sweat. By the time I walk outside to go to work I am feeling really warm and am never dressed correctly for the weather. Despite being underdressed I keep sweating through all of my clothes. At some point during the day at my office I cool off and then I become really cold which leads me to throw on the layers before I go to bed. Two out of three things could be happening here:

1. The new antibiotic cycle mentioned above has riled up the tick-borne bacteria that I am harboring, and my body is trying to get rid of it, or

2. Due to the amount of antibiotics I have been on for the past two years, my thyroid has been affected, or

3. A combination of 1 and 2. 

On a few occasions while mentioning my hot flashes at work, I have been told I am too young for menopause. That statement is the only funny part about this hot flash scenario. Clearly more extensive blood work for my thyroid is in my future.  

IT'S THE MOST WONDERFUL TIME OF THE YEAR

It’s that time of the year again. The Christmas trees are all decorated, holiday music is blaring all day long in at least one co-workers office, and everybody is bringing holiday treats to work that I need to avoid. Usually I am good at sticking to my Lyme diet and ignoring holiday parties, but over the past week and a half I got caught up in the holiday cheer and did a few lunches with friends, sampled cookies, cupcakes and chocolate at various parties and drank a couple of sodas. In what may or may not be a coincidence right before I started indulging in holiday sweets, I came home from work one night, sat down on my couch and started crying. And I couldn’t stop. It was most likely a combination of exhaustion, increased aches and pains from a few days of wet/cold weather and the fact that everything is very open-ended in regards to how long this will keep going on and when I will actually feel human again. I guess every once in awhile a good cry about this frustrating battle with Lyme disease is therapeutic. I woke up the next day with a stuffy nose, puffy eyes and one of those nasty headaches you get after crying for hours. Once I started moving around I felt better and was in a good mood by the time I got to work. As it turns out, that headache I just mentioned above is nothing in comparison to what I have been dealing with since I decided to let sugar back into my diet.

Processed sugar is one of the many things I was told to cut out of my diet when I started my treatment due to the fact that it causes an inflammatory response when consumed, and people with inflammatory diseases do not need to increase their inflammation. As you can see above, I really sugared it up for the holidays. I’m not saying I have been completely processed sugar free throughout my treatment. Every once in awhile, never on consecutive days, I really want cake. Or pie. Or chocolate. Or soda. It always tastes good going down and then I regret it when my symptoms flare up.  This was the first time my indulgence spanned a block of consecutive days. 

This past Thursday I got a headache around 4 PM while I was at work and I ate a mini-snickers bar. My headache went away. But the right side of my neck and shoulder were throbbing. Later that night the headache came back while I was trying to go to sleep. Between the headache the shoulder and neck discomfort I couldn't fall asleep. Friday at work the headache started at about 4 PM again and I ate another piece of candy… well more like a handful of Hershey kisses. This has happened to me around the same time every day since. Each night my head, neck and shoulder aches have gotten worse. Last night was the worst night since my sugar binge headaches began. The pain in my neck and shoulder was about ten times worse than the first night. My ears had stabbing pains in them. My jaw hurt. I was dizzy and at one point it felt like my brain was trying to climb out of my head. I couldn’t get comfortable and was up till the wee hours of the morning tossing and turning, really regretting my week and a half of bad food decisions.  


Today my headache came knocking at around 4 PM and I didn’t answer. I am ignoring the sugar craving and my headache is getting worse. As I am writing my neck is getting more tense by the minute and my jaw hurts. I hope my family is ready to deal with my sugar withdrawal during Christmas since I am heading their way tomorrow. 

(Click here, here and here for major food-related incidents I have written about).  

DO YOU THINK YOU ARE GETTING BETTER?

This is an interesting question that I am often asked. My day-to-day battle with Lyme disease is very up and down. Actually sometimes the hourly battle is up and down. It is best to look at the big picture when trying to answer. I can honestly say, with a big grin on my face, that I am doing much better than this time last year. Isn’t it funny how a potential thyroid problem, being on six antibiotics, experiencing heightened aches and pains from the winter weather and exhaustion count as “doing better”? 

I should say, energy-wise I am doing better. I am more active then I was year ago. And while I still have to take a lot of naps after a full day of activity, the naps are not as long. My parents even commented on my energy level when I was visiting in November for Thanksgiving. They were excited to see me more lively and in a better mood than I have been in for many, many months.



Side Note: 

The night before Thanksgiving I went to a Rob Zombie concert with my friend Laikisha at the 9:30 club in Washington, DC. It is a small venue, and we pushed ourselves up near the stage to rock out for the show. In addition, we also got knocked around since we were standing at the perimeter of the mosh-pit. With aching hips, legs, and shoulders I woke up the next morning and was on the road by 5:15 am to drive 5 hours north to visit my family in New York. I wouldn’t have been able to stand up at the concert last year for the whole time, let alone get 5 hours of sleep and then drive to New York for Thanksgiving. Who am I kidding. I don't even know if I could have physically gone to the concert last year. Even though I was tired and had to take a lot of naps during my visit in New York, my parents claim I was energetic. So there you have it. I am getting better. The process is slow as molassis, but I am getting better!!

Rawctober

Have you ever put waffles in a microwave, set the timer for 5 minutes and walked away thinking that thick black smoke and acrid fumes weren’t about to consume the common area of your dorm?

I have!

In my defense I never used a microwave until my freshman year of college. Five minutes in a toaster oven is way different then five minutes in a microwave. Needless to say my friend Nicole C., who  helped me scrape burnt waffle off the bottom of the microwave, will never ever let me forget about the “waffle incident”. Click here for a short video that she claims depicts how I used to cook in college. Imagine her surprise and the surprise of everyone else in my life when I recently announced that I was going to attempt to eat raw vegan food for a month.

What do you mean by raw vegan?

Raw foodism (or rawism) is a diet consisting of uncooked, unprocessed, and often organic foods. Raw veganism combines the concept of veganism (no animal products) with raw foodism. 

Why?

I like to challenge myself. In the days before Lyme disease challenging myself usually meant signing up for races that required a lot of training and the desire to push my body to the limit. Since being diagnosed with Lyme disease, I cannot race anymore and am always looking for other ways to test myself in addition to the challenge of recovering from Lyme. At first the act of actually preparing my own food while following the doctor suggested food restrictions was a task that seemed insurmountable, but now it is like second nature to me. A raw diet seemed like a good next step. Click here and here for a refresher on my self-made path to becoming a chef.

When?

Long before the raw food idea popped into my brain, Kathleen, my roommate from college had planned to come visit me in DC over Columbus Day Weekend. Since I had never attempted to prepare raw food in my life and didn't want to subject her to my food experimentation, I decided to go raw in mid-October after she had returned home. Having lived with me for 4 years, she is no stranger to being subject to my great ideas and probably would have been cool about trying out whatever I was making, but I also really wanted to hit up Cactus Cantina; the Tex-Mex restaurant in walking distance from American University where many a fun night started back in the day.  We had a great weekend that included lots of laughs, catching up with old friends and Mexican food. On October 14^th I woke up with a food hangover, and then plunged head first into the raw-unknown... well, unknown to me.  

How Are You Going To Get Enough Protein?

When I started mentioning the raw vegan experiment to friends and family, everybody was immediately concerned that I wasn’t going to get enough protein. This is a common concern that people voice the minute they hear you are not going to be eating meat; it appears that many people do not think that plant-based food offers up enough protein to sustain living. Throw the word “raw” into the mix and the protein questions multiply exponentially. Truth be told I really had no idea how to answer the protein question in the early days of kicking the idea around, because in typical Julie fashion I declared my intention, and then did research after the fact.

“Sorry I’m Late, I Was Removing Chunks of Banana From My Hair”

Early on in my research I came across do it yourself raw vegan face and hair care product recipes. About a month before my official  raw vegan experiment began I made a cacao avocado face mask and banana olive oil hair mask. The face mask, made out of cacao, avocado and raw honey was a smashing success. It smelled delightful, it made my skin soft and what didn't end up on my face ended up in my belly because it can be a face mask or a dessert.

I also made a hair mask out of bananas and olive oil, and while it made my hair feel incredibly soft and silky, I did not use ripe enough bananas. For a good 4 days after rinsing, I was constantly picking bits of bananas out of my hair. I plan to try this one again with an overly ripe banana, because the results (minus the banana bits) were amazing.  
  
Two Weeks Felt Like A Month

Eating completely raw is incredibly time consuming and labor intensive, and also requires a lot of planning. Most of the recipes I came across online called for soaking the ingredients over night before use in meal preparation.  For instance, the “mock tuna salad” pictured to the right, called for cashews, walnuts, sunflowers seeds and pumpkin seeds to be soaked overnight before preparing the dish. Soaking raw nuts helps aid digestion. For this recipe I made mayonnaise out of cashew nuts, olive oil, raw apple cider vinegar, lemon juice and salt in a food processor. The “tuna” consisted of walnuts, pumpkin seeds, and sunflower seeds that also needed to take a whirl in the food processor before being combined with the mayonnaise and the other vegetables that were mixed into the salad. It was a lot of work, for something that you don't actually have to cook; but it was a rawesome!

Sprouting, which is a great source of protein takes two to three days, sometimes longer for whatever you are sprouting to be ready for consumption.  My first sprouting experience was with mung beans (pictured in the protein section above). Once the dried beans were procured (bottom half of the photo), they had to soak over night, and then throughout the next two to three days I had to rinse the beans twice a day as they hung out in a mason jar covered with cheese cloth as they sprouted (the top part of the picture). After I successfully sprouted mung beans I branched out and experimented with buckwheat groats and quinoa. Before I knew it I had jars of sprouts taking over my kitchen. I have yet to try sprouting lentils, but those are next on my list.

I made it for two weeks eating a completely raw vegan diet. I had to start integrating "not raw" vegan food back into my diet at least once a day because I started losing weight, and that was not my intention. There is no need for me to lose anymore weight then I already have throughout my treatment thus far. However, I thoroughly enjoyed researching and preparing raw food and will be integrating it into my diet moving forward.

Life Is Uncertain, Eat Dessert First

I have really taken a liking to making raw snack bars and desserts. Not only do they taste great,  there is minimal prep work involved. The hardest part is cleaning out my food processor. The fig bars pictured to the left are one of my favorites. The ingredients are oats, walnuts, figs, coconut oil, sea salt and water. Switch out the figs for dates, and the walnuts for almonds and you have delicious date bars. Switch out the dates for goji berries and add some ginger and you have goji berry ginger bars. So versatile.

One night I came across a recipe for raweo cookies, you really can find anything on the Internet if you look hard enough. I have made them twice and am still tinkering with the ingredients for the filling. I hope my local friends are ready to pig out on raweos and homemade hemp milk when I deem them tinkered to perfection.

This past weekend I made my very first raw vegan key lime pie. It was rawtastic and I intend to make another one for Thanksgiving. When you think Thanksgiving feast, don't you automatically envision a raw vegan key lime pie? I do. I hope my family does as well.

Lady of Leisure

I’m not big into politics. Yes, I live in Washington DC. Yes, I am a Federal employee. But it’s true, I am not big into politics. Unfortunately Lyme disease and politics go hand in hand and as I wade through the murky Lyme disease treatment/recovery waters, it is one of the only political topics I will gladly talk your ear off about. This past February I wrote a three part post that documented the politics behind government agencies hindering research on Lyme disease; click here for a refresher, or to read it for the first time. 

Recently, politics and my Lyme disease battle crossed paths again in the form of a government shutdown; and I have to admit that Lyme disease-wise it was refreshing. Don’t get me wrong, I am not condoning the decision to partially shut down the government from October 1-16, 2013. In my opinion nothing was gained politically by that stunt. I could go on and on about how the shutdown was a waste of money and set off a far-reaching chain of negative events for federal employees and those throughout the United States who depend on federal programs that were effected during the shutdown, but like I said, I am not really into politics, and you’re not reading this blog to gain insight into my political musings. Let's get back to the Lyme.

Don’t Bother Me, I’m On Furlcation

A common theme in many discussions surrounding my health is that people don't understand how I have managed to keep a positive attitude and work throughout the scary months leading up to my diagnosis, and throughout my on-going treatment despite the fact I am exhausted and experiencing painful symptoms. For many years I pushed myself through grueling athletic events with a smile on my face as a hobby, and not many people understand what drove me to do that either. I feel like the same thing applies in terms of how I have chosen to take on Lyme disease. I have previously mentioned that some days I cannot get out of bed, but if the pain is manageable I much rather be at work or hanging out with friends; it is the way I am wired. 

For the first time since I was diagnosed with Lyme disease I had a nice chunk of schedule free time... well almost schedule free time. Due to the fact I was furloughed during the shutdown I found myself with a lot of time on my hands. I still had to wake up every day and take my supplements and medications that need to be ingested an hour before I eat. An hour later I would eat breakfast and then take the rest of my antibiotics on a full stomach. And then I would do it again around dinner time. But other than that, nobody was expecting me to be anywhere and I took full advantage of that. If I woke up in the morning and didn’t feel well, I would go back to sleep after completing my antibiotic ritual. If I slept all day, then that is what my body needed to do. If I woke up a few hours later feeling refreshed, I filled my day with relaxing activities like furlough lunches, reading, trying out new recipes, watching Breaking Bad, and walking around town to take pictures of all of the signage and barricades that were telling people what was closed due to the government shutdown.

During the first week of the government shutdown we had “summer in October weather” which inspired an outing to an apple orchard with a couple of my similarly furloughed friends. When not wandering around the orchard remarking about how nice it was to be out of the city and marveling at the vast apple selections, I was silently worrying about picking up ticks. This is now a regular occurrence for me when I spend time outdoors in non-paved areas near the woods. The last thing I want is to get bit  by another tick-borne illness carrying tick. Truth be told I also get concerned when I see all of my friends posting pictures of their kids playing in tall grass and leaves, but that is another story.  Thank goodness that the tick-free Radio Flyer wagon offered up a safe spot to rest my tired legs.

The beautiful weather also inspired me to do the most thorough cleaning and organizing project I have done since moving in to my condo. I had the usual aches and pains but I was so energized and well–rested that nothing was slowing me down, which all changed when a cold front arrived and blew the unseasonably warm weather out of town. Thanks to the Lyme disease I ended up with stabbing pains in many of my joints; it made me grumpy and I chose not to leave my condo for a couple of days. I was hoping the weather related joint and muscular pain that I experienced last winter would not be as severe this time around, but sadly I must report that the cool/damp weather is still my nemesis. The cooler weather was the catalyst that ended my outdoor activities and caused me to sit on my couch for hours at a time watching Breaking Bad. To say I have become addicted to a show about methamphetamine is an understatement. Since the furlough ended it has been hard for me to adjust to the fact that I can no longer watch 5 episodes in a row on a weekday afternoon while lying on the couch in my pajamas. 

All kidding aside, for the past few weeks I have been having a hard time adjusting to being back at the office. It was refreshing to have a chance to let my body do what it wanted to do, when it wanted to do it. Having to be back on a time schedule has left me feeling more exhausted than usual. The fluctuating weather pattern we have experienced over the past couple of weeks has added to my discomfort. Adjusting to the time change is taking longer than usual, but I am back in the swing of things. I wake up early enough to partake in my daily morning antibiotic ritual before I head to work to play catch up on deadlines that were missed during the furlough. If I have enough energy after work I go to yoga or I catch up with friends. Often I doze off on the metro heading home from work which is a signal that my day is over and of course I am still preparing all of my own food while wishing I could just eat ice cream and pizza for dinner every night without repercussion. 

Now if you'll excuse me, I need to go watch some Breaking Bad.

Did You See This?

Cyclo-cross (sometimes cyclocross, CX, CCX, cyclo-X or 'cross) is a form of bicycle racing. Races typically take place in the autumn and winter (the international or "World Cup" season is October–February), and consist of many laps of a short (2.5–3.5 km or 1.5–2 mile) course featuring pavement, wooded trails, grass, steep hills and obstacles requiring the rider to quickly dismount, carry the bike while navigating the obstruction and remount.

Yesterday afternoon I attended the DCCX event with my friends Gabby and Ben. This is the second year in a row that I have been a spectator at the only cyclocross event in Washington, DC. This was also the second year in a row that I found myself wishing I was well enough to participate. Truth be told, I have a hard time staying upright on my bike while riding on dry, flat surfaces. Why I would want to ride on a technical course that is mostly on trails, with spots where you have to get off your bike and carry it over your shoulder while navigating obstructions is beyond me. But of course this is now on my list of events that I want to participate in down the road when I am back on the racing circuit; whenever that may be. (Those of you who have had the pleasure of training and racing with me know that I am not exaggerating regarding my cycling issue).

For the majority of the day I sat in my beach chair and watched the participants navigate the part of the course that was right in front of me. A few of my friends rode in the last race of the day, which led me to wander all over the course cheering while taking pictures. Cheering isn't nearly as strenous as doing the actual event, yet when my alarm went off this morning my limbs felt like sore, lead weights and I was so tired I could barely open my eyes. I wanted to call in sick to work and sleep all day, but since we just returned from being furloughed during the government shutdown, I figured a day off was not in the cards. You will hear more about my furlough experience next time. For now I am going to switch gears and share some recent articles I've read about Lyme disease. 

During the past few months tick borne diseases have been getting a lot of press and I appreciate the fact that my family and friends have been sending me all of the articles they come across. Occasionally I'll receive multiple links to the same news story, but for the most part I am reading info from newspapers that are local to where my friends live, that I would never see otherwise. Please keep them coming and please be mindful that many of you are living in areas that are teaming with tick borne disease judging by the articles that your local papers are publishing. Here are four articles that are really interesting and informative that I think you’ll benefit from reading as they all touch on information I have discussed throughout my blog:

A United Front Against Lyme

The Worrying Rise of Tick-Borne Disease

Untreated Lyme Disease: 2 Years of Hell

When the "Cure" Doesn't End the Pain

Throwback Tuesday

Throwback Thursday is a weekly post theme that many social media users like to participate in. It is all about selecting an appropriately nostalgia-inducing picture – from a different era of your life, and then hash-tagging the crap out of it before posting it online. For the purpose of what has prompted me to write today, I'm calling it Throwback Tuesday. It’s no big deal though because some people post selfies that were taken 12 hours earlier in the day for Throwback Thursday, so as you can see, the unwritten rules about throwback Thursday are often stretched.

Two years ago today, during the era when I could still run, I participated in my last race before my body crapped out on me. I had unofficially diagnosed myself with Lyme disease by this point, but it would still be another two months before meeting my current doctor and beginning treatment. You can click here and also here for refreshers on my frustrating path to getting diagnosed.

Long before I started this blog I used to craft “Race Reports” to share with my friends and family after each of my events. I really miss competing in races and sharing my experiences, so today I reached into my archives and pasted my last race report into this post. I also took the liberty to correct a few grammatical errors, and in the process probably created a few more. Drum roll please...

Ragnar Relay DC - Race Recap

On September 23-24, 2012 I had the opportunity to participate in the Ragnar Relay DC event as part of the "Captain Awesome and His Bag of Monkeys" team. And, well... it was awesome!

A quick overview of Ragnar Relay DC

The race started in Cumberland MD and ended 200 miles later at the National Harbor in Washington DC. Each team that participated had 12 runners and two vans. Each person ran 3 times throughout the race. Each leg of the race varied in mileage. There is, of course, always one exception. The ultra teams. These teams were made up of 6 runners and one van and they split up the 200 miles between six runners. Ouch. They are crazy. One day I suspect I will be part of a Ragnar Ultra team. The race start was staggered so 10 - 12 teams started every hour on Friday for a good part of the morning into the early afternoon.


Each running leg is mapped out beforehand and the team Captain assigns each runner a position (1-12). Information about each of the 33 running legs of the race is distributed to each team detailing the mileage of each leg, written directions, maps, and descriptions of the areas that the runners will be running through. Runners 1- 12 on each team run in the same order for the whole time from start to finish. After each leg is completed, a slap bracelet is passed off between runners instead of a baton like you see in those much shorter relays that they run at track and field events. While one person is running, the vans are following and cheering them on. (Or getting food and trying to sleep depending on the time of day and which van of runners is running).

I was on a 12 person team and signed up for the shortest amount of mileage possible due to my chronic leg injury that makes it hard to run (yet I keep running). In total I ran 12.2 miles out of the 200.

If you ask my leg, that was 12.2 miles too many.

If you ask me, I say "What could be more fun than riding in a van for almost two days with 5 people I had never met with an inflatable monkey tied to the back door, telling dirty jokes and pretending that the stinky and muddy running clothes that were piling up did not smell like freshly raked mulch on a 100 degree day"?

I was runner #5, part of the first van. Here is a summary of my running journey. Our team started at 11 am on Friday, Sept 23rd.

Leg 5 (my first run of the day): 4.3 Mile "Mud" Run

Highlights from the description of Leg 5: "Switchbacks and some steep climbs await you. Prepare for Dust. VANS - THIS ROAD HAS A FEW NARROW PARTS, USE CAUTION, WATCH FOR RUNNERS, AND DRIVE SLOWLY".

It was a rainy morning. Runners 1-4 got caught in some downpours. When I got out of the van to run the rain had let up. I soon found myself ankle deep in a long and winding mud pit, which before the rain I am sure was a dusty dirt road with switchbacks and steep climbs.

I was running along feeling great, trying to get into my groove which proved to be hard because I had gobs of mud stuck to my sneakers. My teammates drove past me in the van honking and cheering and then they were out of sight. I was concentrating on trying not to slip in the mud when I started hearing loud noises in the distant woods that sounded an awful lot like spinning tires stuck in the mud on a steep hill. As it turns out, I was correct! There were MANY vans stuck in the mud up ahead of me, including my team van. The hill happened to be one of those narrow parts mentioned in the description.

I was covered in mud from the waist down sliding all over the place with mud cakes for shoes (mud cakes don't have terrific traction). One minute I was trying not to slip while running up hill, and the next minute I was darting/sliding all over the road in an attempt to avoid the vans that were sliding sideways and backwards down/across the same hill I was attempting to get to the top of. I heard a lot of cheers as I passed my van sliding around in the mud. Many vans got stuck that morning, leaving their runners stranded at the next checkpoint until they could get out of the mud and deliver runner #6. My teams van was able to navigate through the mud pit and around the vans that couldn't climb the hill. They honked as they left me in their muddy tracks as they headed toward the exchange.

Going down the hills in the mud was not much better as I was trying to keep from sliding and falling forward which in turn put a lot of strain on my leg. Between that and my muddy shoes that felt like they weighed ten pounds each, I am sure I looked like a duck waddling down a hill. At one point I did wish I was a duck. Webbed-feet and knowing I wouldn't have far to fall if I tripped sounded amazing.

I made it to the exchange, and then happily tried to get as much mud off of me with a wet wipe as I could before I entered the van to change!

Leg 17 (my second run) 4.4 Mile "Where’s My Night Light?" Run

Highlights from the description of Leg 5: Rolling hills continue! To the north of you is Fort Ritchie Military Reservation and to the South, the famed Antietam Battlefield.

I set off for my second run at 1:32 am on September 24th. The air was thick with moisture causing a low lying fog. Visibility was about 5 feet, maybe less. At the exchange there were big spotlights, vans with their lights on waiting for their runners, and plenty of headlamps to make it appear much brighter out than it really was.

I took off running decked out with my headlamp and my blinking light so traffic and other runners could see me. The first quarter of a mile was great. Lights here and there from houses, vans passing me on the road shuttling runners to the next exchange and I was running on pavement and not slogging through mud. The team van drove past me and cheered. Then reality set in.

I was running in thick fog with low visibility. There was nobody else on the road with me because we had passed a bunch of teams throughout the first day, and hadn't quite caught the next bunch of teams that we eventually passed.

The sound of crickets filled the air, yet the silence was deafening.

On a scale of 1 to 10, one being mildly freaked out and 10 being FREAKED OUT, I was about to break the scale at a 10. I was running in the breakdown lane on the left side of the road. My light was illuminating all the brush and bushes on the side of the street. Droplets of dew were sparkling as my light swept over the bushes. Every once in a while I would see a mailbox. In front of me I could see the lines on the road, but they looked like they were disappearing into a black hole due to the fog. When I would reach a hill the road literally looked like it was dropping into nothing because I couldn't see over the crest. I was curious to see what was on the right hand side of the road since I knew I was near the Antietam battlefield. About a mile into my run, I looked to the right and saw cornstalks encased in fog. And then this happened...

The minute I saw cornstalks (which looked down right ghastly in the fog), I thought of Malachi and the Children of the Corn. Damn you Stephen King and your scary short stories! I have never had a panic attack before in my life, so I can't say with certainty that is what happened, but I really think that is what happened. My chest felt really heavy. It sounded like my breathing was echoing in a cave. All of the dew droplets on the bushes lining the side of the street turned into little beady eyes of kids who wanted to kill me and I swear I heard laughing. And then I took off. I ran the rest of this leg in a personal record setting pace. I always claim I have one speed of running. It is not that fast, but I can keep going for hours. As it turns out, in the middle of a foggy night when I think fictitious characters are going to appear out of nowhere, drag me into a corn field and kill me, I can really kick my running pace up a notch or five. My mind was working in overdrive, as were my legs. I wanted to cry (I may have). I had to keep wiping my eyelashes because the fog and my sweating were producing so much moisture it looked like I had spiders on my face when I was looking out of the corner of my eye. And then this happened...

One minute I was thinking I was covered in bugs and there were eyes on the side of the road watching me and the next minute I heard breathing. Someone was running up behind me. The footsteps got closer and closer. The road got brighter. I was about to scream and then I heard "Nice job out here tonight. You are really moving" as the one man who I saw on this leg of my race said as he passed me on my right side. At first I was blinded by his headlamp when he turned to talk to me. But then I got so excited to see someone else on the street that I started running even faster so I could keep my eyes on his blinking lights.

I was so relieved to see the Ragnar Relay checkpoint signs as I turned the final hill and ran to the exchange. I ran this leg of the race significantly faster than my first leg, even though this one was slightly longer, and for the first mile I was running my usual pace.

Leg 29 (My last run): 3.7 mile "Oh Boy! That Hurt" Run

Highlights from the description of Leg 29: Nice and flat (which was a lie... there were some hills).

I knew this last leg of my race was going to be bad news after running twice, and then trying to sleep in a van with six people in a high school parking lot all curled up in a ball after having a panic attack near the Antietam Battlefield. I was exhausted and my leg was so sore and inflamed that I could barely walk across the parking lot to the grocery store that I was going to use the bathroom at before I started my last run. I was hobbling/shuffling along the parking lot thinking to myself, 'Self, you may need to crawl this last 3.7 miles".

#backwhenicouldrun#isthatabananainyourpants
#dontspankthemoney#don'tsliponthepeel

I am happy to report that I was able to stay on my feet for the entire run, which was quite miraculous because I was tripping over everything due to the fact that my foot that was connected to my bad leg actually never left the ground. It kind of dragged itself behind me. I bet I looked funny sort of running sideways with one leg trying to move forward and one leg just trying to move whichever way it could. 

Captain Awesome and His Bag of Monkey's finished the race in 28 hours and came in 21st out of 262 teams overall, and 9th out of 50 teams in the "Mens Open" division. Even though we had men and women on the team, we didn't have enough women to qualify as a mixed team.

______________________________
Sidebar: The chronic leg injury I mentioned in this race report wasn’t caused by running. I always attributed it to running because for the four years that it bothered me it always got worse after I ran.  It turns out that when I would go for a run, I would irritate the already inflamed muscle in my leg that was being attacked by the tick-borne disease party that I had been hosting for many years, without knowledge or consent. I still have the leg pain and it comes and goes with my level of activity and inflammation. My doctor often refers to my athleticism as a thing of the past; I prefer to say I have been overcome by events and am on a training hiatus. I love competition and I love writing race reports; while it is going to take a good amount of time I can say with confidence, I’ll be back.

The Value of a Firm Handshake

“Handshaking is a very common method of transmitting the cold and influenza virus”. This quote has nothing to do with the value of a firm handshake, but I am not sure where to start today and I figured since flu shots are now available around town that this quote was somewhat topical. 

Speaking of flu shots, with my weakened immune system I have been strongly advised not to get one for the past two years. No big deal. I have only gotten one flu shot in the past ten years, it was about 6 years ago, and I got the flu shortly after receiving the shot. I have snubbed the flu shot ever since. People always look at me like I am crazy when I say I don't get the flu shot; it is the same look I get when I tell people I don’t eat processed sugar. You heard it here folks I avoid flu shots and processed sugar; gosh I am so weird. Speaking of processed sugar, Halloween is just around the corner. This means I am going to have to steer clear of the candy pushers who get ridiculously offended when I turn down candy at the office. "No thanks" I say, "I prefer to snack on these raw almonds". Nobody believes me. 

WOW! I am totally off track. My intention was to write about how my treatment to break up the biofilm (discussed in my previous post), combined with me discontinuing one of my antibiotics per my doctor's request (forgot to mention that in my previous post) has led to increased discomfort, tingly feet and crippling pain in my right hand, and I am right handed. The hand pain sucks and it happens to be the reason why my writing has slowed down. Trust me I have endless amounts of Lyme-related information and experiences to share, but by the time I get home from work it is hard for me to make a fist with my right hand and typing is the last activity that my hand wants to participate in. My hand has also been cranky about opening up jars, bottles and squeezing toothpaste out of the tube.  The hand situation also led to an interesting first two weeks at my new job which I started a month and a half ago. Additionally, I haven’t been sleeping very well for the past two weeks. I am exhausted, a little spacey and I am experiencing bad headaches. I apologize in advance for all of my rambling. (Perhaps I should have prefaced this post with the lack of sleep/headache/rambling information). I could cut and paste it, but this is a good example of what goes on in my head during the week when I am trying to work, prepare all of my food, keep up with my Lyme disease antibiotic regimen, etc., while not getting enough sleep.

Guess what. I think I just figured out how I should begin this post! On July 29^th I started a new job. Like any typical new job it involved orientation, a lot of paperwork, and shaking a lot of important people’s hands from many corners of the agency. In my mind, when meeting people for the first time whether you are in a professional or personal setting there is nothing worse than a limp handshake. Oh wait, there is. A sweaty limp handshake. Luckily for me my hand temperature is perfect. 

About three and a half weeks into my new supplement and antibiotic schedule I began to notice some changes. I had increased pain and discomfort in all of the places that usually have pain and discomfort (neck, shoulders, hips, legs, knee, etc.) and one new place; my thumb. The side of my right thumb became very tender and constantly felt like it was bruised from below my nail bed to my wrist. If I used my hand too much throughout the day the bruised feeling turned into shooting pain that radiated through the rest of my hand. I was trying to get used to this new annoyance when I experienced a herx reaction. I discussed herx reactions in November 2012 in the following posts: "And then my immune system woke up" and "Buckle up and enjoy the ride". A quick review:  A Herx reaction occurs because the Lyme bacteria, under attack from the antibiotics, start to break up and die, releasing toxins and other harmful debris as they do so. This, in turn, causes the body’s immune system to temporarily go into overdrive in order to cope with the abrupt deluge of toxins and debris.

I hadn't had a herx reaction in about six months and while I wouldn't say this was the most severe one I have experienced during my Lyme treatment, it did keep me in bed for about two and a days; Friday thru Sunday morning. When I went back to work that Monday, coincidentally my last week at my old job, I was feeling exhausted, extremely sore, achy and a little out of it. Two days later I took the day off to attend Mayhem Fest with Laikisha in Bristow, VA. What is Mayhem Fest? Mayhem Festival is a traveling metal festival that includes bands that represent a broad range of sub-genres including thrash metal, death metal, metalcore and power metal; just to name a handful. It is an all day event that involves a lot of walking around from stage to stage, standing, shopping, people watching and head banging. With my constant neck issues I did not partake in the head banging  but I will tell you watching other people throw their heads around made my neck hurt more. The picture on the top left is a fine example of a t-shirt that I refrained from buying while we browsed the merchandise. 

Laikisha and I had a lot of fun soaking up the sun and people watching while listening to the music. I am not going to lie though, walking around all day was adding to my increased aches. Take a look at the photo to the left of me throwing devil horns with a nice man that I met wearing half of a bear suit. My thumb is in the wrong spot. It is not because I don't know the proper way to rock the devil horns, it is because my thumb was too stiff to bend into the proper position. The half man/half bear didn't seem to mind, so neither did I. Long after the sun had gone down and Laikisha and I had dodged some seriously insane mosh pits, my posture was incredibly slouchy and my legs and neck were throbbing, but none of that stopped me from thoroughly enjoying Rob Zombie's performance which closed out the night. Laikisha and I left the venue covered in dust with hoarse voices and bizarre new followers on our social media accounts due to the Mayhem Fest references and pictures of Rob Zombie we had posted. At work the next day I was more exhausted, achy and robotic than usual, but I survived the last two days at my old job and had a phone full of unique photos from my Mayhem Fest experience to share with my co-workers. 

I had a weekend to rest up, but I was feeling less than rested when I reported for my first day of work on July 29th. I was stifling yawns during orientation, I was trying to ignore the pain in my hand while filling out loads of paperwork, I was limping because my knees and ankles were so sore and I was hoping that I was only wincing on the inside when people were coming in with the death grip to shake my hand. Not wanting to be known as the "new girl with the limp handshake" I tried my best to firmly shake back which on a few occasions caused my shoulder to crack. Talk about a bunch of vigorous handshakers. 

It was a good two weeks of multiple handshakes a day before my hand finally got a rest. I mentioned to a few of my friends that my thumb and hand pain had intensified due to all of the introductions at work. My hand looks totally fine to the naked eye and I didn't want people to think I was rude and making up a hand injury by not wanting to offer up my hand when they stuck theirs out. Some of my friends suggested buying a wrist brace, while others told me to lick or sneeze into my hand upon meeting people. I was trying to make a good impression. Licking or sneezing into my hand before extending it would have given off the wrong vibe, and  worse yet, if I had been sick I could have spread germs to my new colleagues if for some strange reason they still chose to shake my hand. 

Formication, Bruising & Biofilm

 “I feel like I have bugs crawling on me again” I said as I gingerly ran my hand through my hair. “It’s called formication, not to be confused with fornication” replied my doctor as he continued to scribble in his notebook while laughing at his joke. It had been about two months since my last appointment and I was sitting in a chair giving him a review of my symptoms when the subject of formication popped up. It is the physical sensation of insects crawling on your body and/or biting you---with no evidence that any are actually doing so. It can have various psycho-, neuro-, physio-, or pharmacological causes. Earlier on in my treatment I experienced this sensation over the period of a few months, sadly it has resurfaced and I am still waiting for it to subside again. You are probably wondering how I responded to the joke. I've got two words for you: Polite giggle. 

While my on-going battle with tick-borne diseases continues to spiral in multiple directions, I am thankful that at least one aspect of my experience has structure; my  appointments. We always start by discussing my symptoms; are they better or worse since my last appointment/medication change and are there any new ones to report? Next up, a brief change of scenery as my vitals are taken in a different room; occasionally an EKG is thrown in for good measure. (According to a recent warning issued by the FDA one of the antibiotics I have been on for almost two years can cause abnormal changes in the electrical activity of the heart that may lead to a potentially fatal irregular heart rhythm). After my vitals are recorded we return to the room we started in and wrap up the appointment with a discussion of my latest blood work results and medication and/or supplement adjustments. 

After I issued the polite giggle mentioned above, and before my arm was fitted with a blood pressure cuff, I dove into the details of a concern of mine regarding my toes. While getting ready for work one morning this past April I stepped into a pair of frequently worn shoes and headed out the door. Around mid-morning my big toe started throbbing but I didn’t think much of it because I am always experiencing ebbs and flows of random aches and pains throughout my body on a daily basis. Later in the day it became increasingly hard to walk and it wasn’t until I hobbled up the stairs into my condo after work and took my shoes off that I saw my swollen and angry looking toe (top picture). When I put my shoes on earlier that morning my toe was fine. When I walked to the metro and then to my office my toe was fine; it wasn't until later in the morning while sitting at my desk that my toe began to throb. The next day my toe was bruised (bottom picture) and everyone I showed it to assumed it was broken and that I had dropped something on it. Within two and a half days the swelling, the pain and the bruising in my toe had vanished. Most likely it was a burst blood vessel. Since April this has happened a hand full of times to both of my big toes while wearing various styles of comfortable shoes that are easy for me to get around in with all of my joint pain. (Translation: old lady shoes). Why is this happening? Nobody really knows, but I shall keep you posted if an answer materializes. 

In my last post I mentioned my doctor’s assumption that a Bartonella flare-up was the cause of my post travel "hangover". During the review of my blood work his assumption was confirmed and a new issue was brought to my attention. Lyme bacteria can create a biofilm that allows it to evade antibiotics. Sounds like the foundation for a creepy pandemic Lyme disease movie doesn’t it? While it is creepy, I am now taking enzymes to break down the biofilm that was so prominently featured in my blood work. Click here to read more about biofilm.

“How much longer are you going to be on the medication” and “When are you going to get better” are the two most popular questions I am being asked these days. The answer to both of those questions is very open-ended. The day I show up at an appointment to see my doctor and tell him that I am symptom free I will have a better idea about how to answer those questions. Till then I will just smile and nod and say “But I feel awful” when people respond to my not knowing the answer to their questions with an enthusiastic “Well, you look great!”

A Different Kind of Hangover

Never under estimate the value of rest and a clean diet while battling chronic Lyme disease. It’s not that I didn’t sleep in Vegas; I just didn’t get the amount of sleep I have grown accustomed to getting in order to function like an upstanding citizen. It’s not that I didn’t leave for my trip with good food intentions; previously I mentioned I had prepared a lot of snacks and breakfast food for my trip. Every day for breakfast I would eat my “Lyme friendly” granola or muffins and then as the day progressed my food choices would unravel. I enjoyed Wolfgang Puck Pizza, Gordon Ramsay’s French fries fried in truffle oil and sprinkled with powdered sugar, gelato, pork tacos… you get the picture. Quick recap of foods I consumed that I am supposed to avoid: Dairy, gluten, fried food, processed sugar, and caffeine. Hey, don’t judge. I was on vacation!

Once I returned to DC it didn’t take me long to realize that I had overdid it in Vegas. (My definition of overdoing it in Vegas has changed drastically since the last time I visited there, but that is another story). Imagine waking up after a seven hour nap feeling dizzy due to a mild case of vertigo and then realizing while you are in the shower that you are in so much physical pain that it actually sucks to be taking a shower.  Try not to be jealous, but this is what happened to me on the first afternoon back from my trip. My entire body felt bruised to the touch. The water coming out of the shower head literally felt like it was beating down on my shoulders. Attempting to soap up my body was a painful endeavor. The fun did not stop there. 

Agitated, disoriented, exhausted and sore; my condition upon returning to the office after my trip. Black-Eyed Demon and The Anti-Christ; names my colleague called me to my face during the first three days I was back. For those of you who do not know me personally, I am a very social, easy-going, happy laid back individual. Even with all of my current medical issues I’ve still (for the most part) maintained my disposition. Don’t get me wrong, I have my moments of grumpiness and anger toward my current health situation, but for the most part those moments are not in public places. 

In addition to feeling like a gigantic off-balanced bruise I was really angry when I returned to my office. My smile was nowhere to be found. I was annoyed that people were stopping by my desk to ask me about my trip. I loved my trip, I just didn’t want to hear people’s voices talking to me nor did I want to answer them. In a low cube no privacy environment like the one our office adopted over a year ago, my agitated state did not lend itself to being nice to my peers. I also had blotchy skin, pupils that were dilated to the point where there was no color in my eyes and brain fog. Not only did I not want to converse with people, when I did open my mouth in an attempt to either have a nice rational conversation or yell at someone, I couldn’t even remember what I was trying to say. One afternoon I was so angry I had to throw some office supplies on the ground in my cube to get some aggression out and make myself feel better. This episode highlighted the immediate need for me to hit the reset button on my body. I turned to a local DC company that delivers homemade raw vegan organic treats, tonics and sprout salads to complete my mission. 

I first stumbled across Goûter (Goo-TAY) at my yoga studio one evening when they were handing out free samples of their products. I was blown away by their delicious raw vegan snacks and tonics and have been enjoying them ever since. The Goûter tonics come in different flavors, are very refreshing and are chock full of vitamins, energy-boosting nutrients and antioxidants. I had been hearing great things about their 3 days cleanses and decided it was a good time to try one since my body had gone completely haywire. I contacted them through their Facebook page and I ordered a 3-day tonic cleanse which was delivered to my front doorstep. There are multiple cleanse options. I requested the one that they thought would be best to combat inflammation. 

Over the course of three days I drank 18 tonics, one every three hours while I was awake (6 per day). My friends kept asking me if I was hungry. I wasn’t hungry at all. I was able to keep my regular schedule of work and yoga without a sign of a grumbling hungry stomach. After the first full day of the cleanse my skin cleared up, my eyes returned to their normal state and my brain fog lifted. By late morning of day two I was suddenly the friendliest person on the planet; bitchy Jules was nowhere to be found. I didn’t take my antibiotics for three days because taking those without food in my stomach would have led to disaster. I still had all of my aches and pains, but I didn’t care. I felt refreshed and happy; the best I have felt since before my treatment for Lyme disease started. I literally felt like a new person. For those three days I also didn’t have to worry about preparing/cooking food which was a delightful break as well.

A couple of weeks after my cleanse I had an appointment with my doctor. I sat in his office and told him about how before I left for my trip I was experiencing pain and swelling in my forearm and elbow along with visible bruising. I told him about my post–Vegas experience and the cleanse while he sat quietly in his chair nodding his head. He told me that the sore tendons/muscles and the attitude shift were signs of a Bartonella flare-up. He changed my medication, and sent me to the lab for more blood work. He was also intrigued by the cleanse and the great results I had, and suggested I try it again.

Would the Bartonella flare-up, which was already in the beginning stages before I left for Vegas, have been as severe if I had not traveled? 

While I didn’t ask my doctor this question when I was in his office, the look on his face when I was telling him about my trip and what happened after my trip spoke volumes to me. That being said, I had a blast traveling with Marisa and Rachael and will gladly do it again, perhaps with less consumption of gelato and french fries. 

**If you are local to DC and want more information regarding Goûter you can find them on Facebook or follow them on twitter @heygouter where you can keep track of when and where there tonics are available for sale. Not only am I fan of their product I am also a fan of Steve Mekowski and V Orban; the team who founded the company. They are armed with knowledge about raw vegan food and its health benefits and have provided me with wonderful information regarding a few questions I have asked them**