Pushing the Energy Envelope

"There is a view among exercise psychologists known as the “energy envelope theory”. Simply stated, each individual has an amount of energy perceived to be available to him/her at any point in time, and if the individual expends only as much energy as they perceive they have available, they will remain in their energy envelope. If they expend more energy then they perceive they have available, then overexertion can lead to worsening symptoms".

I recently read the book “Why Can’t I Get Better? Solving the Mystery of Lyme and Chronic Disease” by Richard I. Horowitz, MD. The author is a board-certified MD specializing in Internal Medicine. He and his wife founded the Hudson Valley Healing Arts Center in Hyde Park, New York, which has treated over 12,000 patients for tick-borne diseases over the past twenty-six years. Dr. Horowitz is known for his pioneering work with Lyme disease and is recognized to be one of the country's foremost experts on chronic illness.

There are many instances throughout this blog where I have admitted that I tend to over do it on the days I am feeling well, which leads to exhaustion, heightened symptoms and me having to sleep a lot. My doctor must be tired of constantly having to remind  me that I don't have any energy reserves and even if I am feeling well I still need to rest. Coincidentally within the same paragraph I quoted above from the book, Dr. Horowitz explains how Lyme patients ignore their basic body signals when they start having good days and then over do it and crash and end up in bed for a couple of days. I am diligently working on slowing myself down and building up stamina while staying within my energy reserve. However, I have spent many years overexerting myself in all aspects of life, so this part of my Lyme recovery is still a major work in progress. 

The book was eye opening to say the least. I learned a lot about Lyme disease and other chronic illnesses and while I may have even more concern now about my health than I did before I picked up the book (I didn't even know that was possible), I am glad that I read it. Environmental toxins, hormone imbalances and sleep patterns are just a few things that can affect Lyme treatment. Viral infections that a Lyme patient doesn't realize they are infected with can also interfere with their treatment, i.e.: Epstein-Barr and West Nile. Lyme Disease can cause autoimmune symptoms even though it is not an autoimmune disease which accounts for the high rate of misdiagnosis. The book is 457 pages so what I mentioned in this brief summary is literally just the tip of the iceberg. The one thing about the book that really bothered me is that Dr. Horowitz made no mention of how costly it is to get treated for Lyme disease and he made it sound like someone could take the information from his book and walk into their physicians office and it would be very easy for them to get proper treatment for Lyme disease. As we all know from reading my blog, that is not the case. But I am not a book critic, so let me get back to talking about me.

Why can't I get better?

This is a good question and not one that is easily answered according to Dr. Horowitz's book. Leading up to Christmas I wrote about the horrible headaches that I was experiencing from what I assumed was consumption of a lot of holiday treats filled with processed sugar. While the lapse in my anti-inflammatory diet played a part in my discomfort the headaches were actually caused by a herx reaction. This herx reaction was quite different than the herx reactions I have experienced thus far in my treatment, so I thought I was just having bad headaches. Click here and here if you need a refresher on herx reactions.

This herx reaction played out over a week and a half. Towards the end of the work day a burning sensation would invade my shoulders, neck and head. The burning sensation would get more intense as the night wore on and pain would start creeping into my neck. I would climb into bed around 7:30 PM because I couldn't function, but would lie there until the early hours of the morning not being able to sleep due to extreme discomfort. I couldn't get comfortable. It hurt to move and it hurt to lie still. In addition to the burning it also felt like someone was trying to cut their way out of my neck from the inside with a rusty sharp instrument. On a few occasions my brain also felt like it was trying to climb out of my head. In the morning when I would get out of bed for work I had a lot of achiness in my neck and shoulders but no sign of the burning and pain. As the week wore on and the pain would come back at night, the burning sensation crept out of my shoulders and neck and was all concentrated in my head. A couple of days after Christmas the pain started radiating into my jaw and it was so intense it felt like all of my teeth were going to fall out. As the night wore on the pain shifted to one tooth and it felt like it had a heartbeat. The most bizarre thing about the tooth pain was that it was in a tooth of mine that I previously had a root canal in so technically it should feel no pain. About eight days into this herx reaction I realized when I was lying in bed that I had an accelerated heart rate. You are probably wondering why it took me so long to realize that. All I can say is that I was dealing with an incredible amount of pain and my heart didn't hurt so I wasn't paying attention to it. After a call to my doctor about my intense burning headaches, tooth/jaw pain and accelerated heart rate I was advised to immediately stop taking one of my antibiotics that I have been on long term for Bartonella and to start taking a different one. In my post from February I discussed how once I was off the antibiotic that caused the herx reaction, I experienced many great things. My brain fog lifted, the night sweats and hot flashes ceased to exist, I wasn't waking up with cramps in my legs in the middle of the night and I no longer felt light-headed when standing up from a seated position. On the flip-side I mentioned that after being off the antibiotic I was having trouble concentrating and I started to experience really bad acne on my face, neck, chest and back.

At the end of February during a doctor's appointment I was telling him about all of the positive things that I experienced with the medication change and he seemed thrilled until I mentioned the horrible acne. I said to him "Now I don't want you to think I am exaggerating about this. I know my face and neck don't look so bad right now, but my back is really bad and it is painful and sometimes it feels warm to the touch". You know it is bad when you lift the bottom of your shirt up to show the doctor your lower back and there is a moment of silence followed by the sound of air being sucked through teeth just as he grabs both sides of your shirt and pulls it back down. There are a few "lucky" folks that got to catch a glimpse of the horror show on my back and ... well... lets say that facial expressions are worth a thousand words! The acne is related to a Bartonella flare up and since the antibiotic I was switched to after being removed from the one that caused the herx reaction clearly wasn't doing a good job of keeping the Bartonella under control, I was told to go back to the other antibiotic but to only take half of the dosage. I was on the half dose for about 4 weeks when I experienced a flare up of inflammation in my neck and shoulders causing me to be extra achy and stiff. The increased inflammation coupled with the fact my acne was still painful and not going away led my doctor to put me back on the full dose of the antibiotic. While the acne looks better than it did a month ago, it is still there and I am now experiencing night sweats and leg cramps again.

Lately I feel like a dog who is erratically chasing its tail. I am stuck in a never ending loop of medication adjustments and symptoms that ebb and flow. While my doctor is tinkering with my medication I have begun a journey down an alternative path. In the coming weeks I look forward to sharing my new experiences with you as I continue my quest to beat my Lyme disease into remission.

The 2014 Winter Olympics

"Hold this for a moment" said the older gentleman as he handed his book to Patrick on the sidewalk. He turned toward me with his hands raised over his head and said "Listen, I am not gonna try to steal your car. I am just going to help you get it off this ice". I smiled and said "Thanks. Go for it", and in my head I thought to myself, even if you wanted to try and drive away, you wouldn't be able to. It's not moving anywhere. The door slammed, and moments later the sound of tires spinning on ice echoed down the street. He stepped back onto the pavement, closed the door and said "The car is stuck". He took his book back from Patrick, wished us luck and walked off down the street.

Twenty five minutes earlier I had misjudged the ground clearance of my car in an attempt to drive over a block of ice/snow that was between me and a parking space that was partially dug out on my street (the joys of city living in the winter).  At first glance it looked like my front tires spinning hopelessly on the ice were the issue. A quick look under the car told us differently. The front axle was wedged in an "iceberg" and my tires were actually lifted off the ground, and resting on at least an inch of ice. For a few minutes Rachael and I stood on the street laughing about my predicament. It was around that moment when Patrick arrived. His lunch plans with Rachael were put on hold as he was immediately put to work.

Rachael, Patrick and I took turns chipping away at the ice with a plastic shovel for nearly a half an hour before the man with the book approached us and offered his help. While I had already tried to put the car into reverse to back off the ice, he insisted I try again. When he saw both front tires spinning on the ice he suggested putting my floor mats behind the tires so I could gain traction. We tried to explain to him that the tires weren't the main issue, but he did not listen. After the floor mat experiment failed with me behind the wheel, he decided to try moving my car himself. I don't know if he thought I didn't know how to put the car in reverse and step on the gas or what, but the line about not trying to steal my car was amusing.

About five minutes after the man with the book gave up, a cab driver pulled over and grabbed some type of metal ice chipper/hoe out of his trunk and told us to dig the tire out. Once again, nobody wanted to listen to the people who had actually looked under the car. We explained that the tire wasn't the issue, but he insisted. Once one tire was free, he grabbed his tool, put it in the trunk, told us we would be good to go, and drove off. I got in my car, put it in reverse, and stepped on the gas. One tire was still spinning on ice, and the other was just spinning in the air because as I previously mentioned my car was perched on a block of ice. As you can see in the picture to the left, my tire wasn't even touching the pavement after we dug the snow out from under it.

The cab driver was a huge help to us though because suddenly Patrick remembered the metal shovel he had for gardening and he went home (about 4 blocks from my place) and returned with it. We all took turns carefully chipping away at the ice, without damaging the undercarriage of my car and eventually freed my car from the clutches of the ice. The metal shovel was more efficient than the plastic one that I found in the storage area of my building. It took us about an hour and a half to free my car. It was 27 degrees out, and nobody was wearing gloves. We made some jokes about what appeared to be bloody snow under my car once it had been moved. It wasn't until we were almost inside when I realized that both Patrick and my knuckles were the source of the bloody snow.

At this point you are probably wondering what this has to do with the 2014 Olympics. I can answer that for you. It has nothing to do with the Olympics. The Olympics ended about two weeks ago and the last time I checked chipping away at blocks of ice under a car, and exfoliating your numb hands on pavement were not on the list of events.

Last year I was so miserable in the winter that I couldn't even stand to be outside. You can refresh your memory about that here and here. This year while the cold damp weather still caused increased joint and muscular issues, I was in a much better mood and a lot more active. After being outside in the freezing weather shoveling/picking away at ice it took me over a week to return to my regular level of discomfort. On one hand I am thrilled to report the improvement in my mood and level of activity over the past year, but on the other hand it is very discouraging because I want nothing more than to feel better and to be able to start training for triathlons again and I am a long way off from being able to do that seeing how I just mentioned that it took me over a week to return to my regular level of discomfort after shoveling.

On February 20th, 2014 Angeli VanLaanen competed in the half pipe at the Sochi Olympics. Who is Angeli VanLaanen you ask? Truth be told, I had no idea who she was until about a month and a half ago. She is an extremely talented freeskier who in 2009 had to take 3 years off from skiing in the prime of her career while she battled Lyme disease. Click here and here for articles about Angeli. And when you have a spare half an hour, check out this video about her Lyme journey.

Angeli's Lyme disease has been in remission for two years. She was able to overcome the mental and physical beating that Lyme disease unleashes on your being and make it back to a level of competition that enabled her to qualify to represent the USA at the Olympics. She made it all the way to the finals in the half pipe and while she didn't finish with enough points for a medal, she is a winner in my book. Her story is very inspiring to me. I know what she had to push through during her Lyme treatment, and I also have an idea about the kind of changes she had to make in her everyday life to get to the point where her body could handle this sort of competition again. She is also very involved in Lyme advocacy work and being in the spotlight at the Olympics gave her a great opportunity to share her story while educating the masses about Lyme disease. I look forward to hearing more great things about her in the future.

Clear As Mud

I am back from a writing hiatus that I didn’t intend to take and I think I have some good news to share. Good news in the world of Lyme disease may not be what the rest of the world would define as good news. I know this doesn’t sound promising, but I swear I think I have good news. Well sort of. Perhaps I should say I have a small percentage of good news. 

Shortly after Christmas I was advised by my doctor to discontinue one of the antibiotics I had been taking for over a year after calling him to describe the headaches, jaw pain, toothaches and accelerated heartbeat that I had been experiencing for over a week. In my last post I mentioned that I was making poor food choices leading up to the holidays and was having issues with head, neck and shoulder aches. It turns out while the sugar consumption played a part in my discomfort, something else was brewing. While I cannot explain exactly what that "something else" was, I promise to give a full update after my next appointment with my doctor. In the meantime we can’t even give a cheer for me being on fewer antibiotics because I was given another one to replace the one I was taken off of. 

That was not the good news I teased at the beginning of this post. 

Ever since I stopped taking the antibiotic I have had acne issues. In the whole scheme of things acne is not nearly as big of a deal as an accelerated heart rate but I am going to take a second to bitch about it anyway because I don’t need horrible acne on my face, neck, back and stomach to remind me how crappy this whole Lyme disease situation is. Yes, I said my stomach. Ugh. However, I am glad to report that during the past two weeks it has started to get better so there is hope for my skin! 

Once again, not the good news. 

A handful of positive things have occurred since I stopped taking the antibiotic. 

For months I was frequently waking up in the middle of the night with horrible cramping in my legs and feet and I didn’t think anything of it until a couple of weeks ago when I realized it stopped happening around the start of 2014. Similarly on many occasions over the past five months I would get extremely light-headed if I stood up to fast from a seated position. The other day at work I stood and realized I was bracing myself on my desk for no reason because I hadn’t been lightheaded in about a month and a half. You're probably wondering why I wasn't more curious about these things as they were happening and why it took me so long to realize they had stopped happening. Truth be told there are so many random things that happen to me on a daily basis it is hard to keep track of them and it is also hard to differentiate between what may be Lyme/antibiotic related or every day wear and tear. I am also on seven antibiotics so ... there's that.

In early January 2014 we experienced the much hyped polar vortex. I woke up the morning of the highly anticipated negative degree weather and layered up with what I thought would be a good amount of clothing to ensure I wouldn't get frostbite during my seven minute walk to the metro. The meteorologists were talking like it was the end of the world. It was colder in Washington DC then it was in Alaska. In my head I thought I was going to step out into the tundra and freeze my bits off. In real life though, I was already sweating profusely before I even made it outside.

Remember those hot flashes I mentioned in my last post? I walked to the metro in negative digit weather while I slowly removed layers of my clothing. My hair and hat were damp because my head was sweating. I had an icy sheen on my forehead because my sweat was freezing. I also had frozen sweat on my back and under my armpits. By the time I got to my office I was holding my coat in my hand and was completely overheated in damp clothes. Polar what? Most of my colleagues remained in their coats and scarfs until the afternoon while I continued to sweat profusely at my desk. A week or so later I came down with a nasty cold. I suspect my icy, wet clothing that I commuted to work in had something to with it. I am excited to report that I haven't had a hot flash since mid-January. I am still having temperature control issues but I am now varying degrees of cold throughout the day with an occasional instance of feeling warm, but I wouldn't call it a hot flash.  

I can't quite put my finger on the exact moment but at some point between the last time I posted (12/13/13) and a few weeks ago the brain fog that I have experienced throughout my treatment lifted. I feel mentally charged. My mind is clearer than it has been since before my diagnosis, and my energy level is through the roof. In fact, my mind is telling my body that we're better. I know this is going to sound weird because I just said my mind is clearer than it has been in awhile, but I'm having trouble focusing. It is not like what I experienced when I wrote about my short term memory loss leading up to my diagnosis, it is more like there is so much going on in my mind I can't keep up with it. 

On the flip side my body is physicially exhausted. I have been dragging it from place to place trying to keep up with my mind which keeps encouraging me to attend a lot of social events. The cold damp weather is not doing me any favors. I am physically wiped out, extremely achy and am trying to find a happy medium between sleep and socializing. So far I can't say that I've been successful in doing that.

My mind is clear, yet I am having trouble focusing. My energy level is through the roof yet physicially my body is exhausted and feels like it is falling apart. 

Good news... right?

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