The Great Chesapeake Bay Swim

Let’s get the shitty part out of the way first.

Two months before The Great Chesapeake Bay Swim (GCBS) I had a Hashimoto’s flare up that caused a rather unpleasant digestion issue. Instead of increasing my mileage in the pool to ensure I could make the 4.4-mile swim, I experienced a solid month of diarrhea. Ugh. Ew. Gross! Lucky for you, I’m going to spare you the gory details and just say my training came to a complete halt. Around the time a little firmness started to creep back into my life, I had a Lyme flare up. There was a lot of concern regarding my participation in the swim due to my overtaxed immune system and lack of training. One morning, two weeks prior to the GCBS, I spent a couple of hours deciding if I was going to do the swim or not. If you think I did some soul searching while making a pros/cons graph to help aid with my decision, you obviously don’t know me very well.

 

28-May-2017

Months prior to my Hashimoto’s/Lyme flare up I signed up for a one miler and two-miler at an annual lake swim in Reston, Virginia. Many participants use the double swim as training for the GCBS. I swam the mile in 27:26, and less than two hours later I swam the two-mile swim in 56:31. I am not going to lie. I was tired after all of that swimming. Despite being seriously undertrained and having never swum more than three miles in the open water at one time before in my life, I deemed myself ready for the 4.4-mile swim.

/ˈsirēəslēˌəndərˈtrānd/

You may wonder what my definition of seriously undertrained is. Let me shed some light on it for you. Leading up to the Hashimoto’s flare, I regularly swam two miles, 0-2x per week in a pool. As I mentioned earlier, just as I was about to increase my mileage, shit happened.

Let me guess, now you have more questions.

• Hey Julie, why did you wait so long to increase your mileage?
• Hey Julie, does swimming zero times a week count as training?
• Hey Julie, why would you want to swim this far anyway?

These are all valid questions, but if you're asking them, you obviously don’t know me very well.

[Side note] Over the past two years my health has improved greatly; a big part of this improvement is because I am listening to my body. If I am feeling tired and run down, I rest. For my health, this is great. In terms of training for an endurance event, this is not great.

11-June-2017

GCBS Details:

• Start: Sandy Point State Park
• Finish: Small beach on Kent Island
• Most of the swim takes place between the dual spans of the Chesapeake Bay Bridge. If any swimmer gets pulled by the current and/or swims outside of either span, it is an automatic disqualification. For those of you not familiar with the Chesapeake Bay Bridge, check out this stock photography so you can get a picture in your head of what it was like to swim between the spans of the bridge.
• It is a diagonal swim from the shore of Sandy Point State Park towards the dual spans of the bay bridge.
• Once inside the spans of the bridge, each mile is marked by a red buoy.
• There are race volunteers in boats, kayaks, etc. following the swimmers throughout the race.

It was the perfect morning for my first ever GCBS. The sun was out and the bay was calm. I couldn’t have asked for better conditions. I started in the second wave at 8:45 am. As I stood at the shore line with the wave two swimmers waiting for the start signal the only thing I was remotely nervous about was my wetsuit. I hate swimming in a wetsuit. I have a sleeveless wetsuit and I still find it to be very restrictive around my shoulders, and it usually ends up choking me. The water was just cold enough that I would have frozen my ass off if I had opted to just swim in my Speedo. I struggle with body temperature regulation, courtesy of Hashimoto’s thyroid disease. I figured it was safer to wear the wetsuit then to risk uncontrollable shivering during my swim.

When the ten second countdown for wave two began, a moment of panic washed over me and I second guessed my decision to participate in the event. Luckily for me it was a fleeting moment. Before I knew it, I was running in to the water trying not to dive on other swimmers, and I felt right at home.

You may be wondering what one thinks about during a 4.4-mile swim. Lucky for you I am going to break it down in to the three stages I experienced during my swim.

Stage 1: Elation

After years of health issues I was so excited to be a part of this event, that I couldn’t stop smiling. The smiling caused me to swallow a lot of water. It was so cool to see cars and trucks speeding by every time I took a breath. It was pure luck that the bay was calm the year I swam it. All I had to do was focus on swimming straight ahead. I didn’t have to worry about fighting currents that could possibly have pulled me out of bounds. 

Examples of the thoughts in my head:

• Oh cool. Check out that mint green truck that just went by
• It would be so great to be eating mint chocolate chip ice cream right now
• Did I lock my front door this morning?
• Did I ever text Alexis back about lunch next weekend?
• Holy cow, this bridge is tall! 
• This isn’t the dirtiest body of water I have ever swam in, but it would be a good idea to stop getting so much of it in my mouth!

I was so wrapped up in my thoughts and the scenery that I didn’t even check my pace as I passed the first mile marker. I felt strong. I was on cloud nine. My bathing cap was slowly sliding off my head. I kept trying to adjust it while swimming but it was not an effective approach. As I swam up to mile marker two, I stopped and adjusted my cap while treading water. As my wrist passed my face to grab my cap, I caught a glimpse of my watch. It read 52:10. I did a double take.

Stage 2: In the Zone

I am sad to say that stage two was very short-lived. If you think back to the amount of time it took me to swim the two swims mentioned earlier in this post, you don’t need me to tell you that energy conservation for later in the race was something I neglected to focus on. Once my cap was fixed and I started to swim again I concentrated on locking myself in to a slower pace that I could maintain for the rest of the swim. Unfortunately my pace kept getting slower and slower. I made it to the mile three marker and then the wheels fell off. Is that a weird analogy to use for a swim? Perhaps, I made it to mile three and my suit fell off, would be better? Probably the best thing for me to say is, I made it to mile three and then everything fell apart. I could easily delete the other two sentences but where’s the fun in that?

Stage 3: Am I there yet? 

Immediately after I swam passed mile marker three my left arm got so tired I could barely lift it out of the water, my legs started to feel weighted down and my wetsuit began to choke me. I tried to adjust the neck of my wetsuit, but getting the leverage needed to adjust a wetsuit while swimming was impossible. I began to fart, a lot. It could have been from me gasping for air while breathing because I was tired and being choked by my wetsuit, or it could have been from something I ate before I swam. Who knows? What I do know is it made me giggle. It felt ridiculous to have bubbles running up my back and escaping through the neck of my wetsuit that I was trying to adjust. And probably just because I was tired and grasping at straws, I thought my farts were making me more buoyant in the water.

By this point in my swim, seeing the cars drive by on the bridge was no longer a novelty. I was working extremely hard and not making much forward progress. I wanted to flag down a car and hitch hike to the end of the race. This thought caused me to have a flashback to the first time I ever crossed the Chesapeake Bay Bridge. I was in my friend Andy’s car and we were heading to Cambridge, Maryland for a triathlon. Just before we paid the toll Andy turned to me and said “I hate driving over bridges, and this is my least favorite one”. As he paid the toll he closed his eyes, gripped the steering wheel and kept driving. Please note those pictures I linked to earlier. The bay bridge spans are 4.5 miles long, very narrow and 186 feet tall at their peak. I grabbed on to the wheel to make sure we made it over the bridge safely and was in awe of the amount of sweat he generated while white knuckling the steering wheel. Once we crossed the bridge and he opened his eyes I said, “You know, you could have just asked me to drive”. One minute I was laughing about this memory and the next minute I was craving tacos and wondering if there were any sharks in the Chesapeake Bay that would attack people. 

Finally the mile four marker came in to view. I slowly made my way towards it. I swear that every time I popped my head up to see where the buoy was, it seemed like somebody was moving it further away from me. I finally reached it.  It was very anti-climactic, mostly because there was still 0.4 to go, and all I wanted to do was take a nap.This buoy was the signal to swim out under the right span of the bridge and towards the finish line at Hemingway’s Marina. During the pre-race meeting they advised us not to stand up in the last straight away even though it was shallow, because there could be crabs, broken seashells, etc. that could cut your feet. The minute my hands touched the bottom of the bay while I was swimming, I stood up. It was just what I needed. I was able to adjust my wetsuit. As I was standing in disgusting muck that was squishing up between my toes, I could see all the jovial people at the finish line cheering the swimmers in. I got a burst of energy and started swimming again. I am not going to lie and say I sprinted to the finish line. But I will say, while my left arm was barely breaking the surface of the water, the rest of me was moving faster than I had been prior to reaching mile marker four.

When I dragged myself out of the water and walked/wobbled through the finisher chute my cheerleading squad went wild!! Special thanks to Rachael, Amy, Maggie and Jesse for coming down to the finish line to see my graceful exit from the bay after my long ass swim.  And an extra special thanks to Rachael who got up at the crack of dawn to experience the pre-race madness with me. It is a demanding job to help coordinate proper hydration, sunscreen, body glide on the hard to reach places and car logistics. I appreciated her enthusiasm, precision and the fact that she drove me home over the Bay Bridge in my car with her eyes open after my swim. 

In conclusion: Even though it is way easier to drive over the bay bridge and of course more efficient in terms of time, I hope to participate in this event again with the proper amount of training beforehand.

The New Normal (Part 2)

Nine months ago I promised a prompt follow-up to the first part of a two part post. Here I am; slightly less prompt then I thought I would be. So much has happened since the last time I wrote but the funny thing is the more things change, the more they stay the same. Even though me writing about a vacation that took place over half a year ago complete with reference to my traveling pharmacy, digestion and thyroid issues and Julie-friendly snacks may sound familiar, I promise the content of part 2 is different from part 1. Where should I begin? Part 1 of this post I started off telling you about a panic attack I had while watching Independence Day during a nuerofeedback section while hooked up to electrodes. I don’t have another story like that, so maybe I should begin at the end… 

And things were going very well for a while. In addition to being extremely social I was swimming and slowly getting back in to strength training while still gaining minimal flexibility in the fifth year of my yoga practice. In fact, I was doing so well that if it wasn’t for my annoying food limitations and the fact I always carry around my thyroid meds and digestive enzymes just in case my day doesn’t go as planned, I probably would have forgotten the life changing health issues I've experienced over the last five and a half years.

Q: So Julie, how well were you really doing?

A: I was doing so well that I put my name in the lottery for the Great Chesapeake Bay Swim at the end of last year, and found out I “won the lottery” in mid-January.

Q: And what did you win?

A: I am glad you asked. I won the chance to swim a 4.4 mile race that took place on June 11^th (yes, that was two days ago) between the two spans of the bay bridge.  

Around the time I won the lottery, work also got very stressful. The stress eventually caught up with me and in early April I experienced a Hashimoto’s flare up, and with that came a whole new host of digestion issues. To add insult to injury I experienced a Lyme flare up about a month later. Suddenly I was not doing so well anymore. And that brings me to the present. Two days ago, I jumped in to the bay and swam 4.4 miles after having barely worked out during the past two months. That was definitely not how I had envisioned my training plan. While I feel better than I did in April and May, I still don’t feel that great. For those of you who knew me prior to this health roller coaster, you already know that it is perfectly normal for me to roll up to the start of a race woefully under trained with a smile on face ready to get it done. Like I said, the more things change, the more they stay the same. A full race report is in the works and will be delivered soon. I promise! 

In November of 2016 I traveled to Baja, Mexico with a group of wonderful friends for some fun in the sun. This was not the type of trip where we sat on the beach sipping adult beverages adorned with mini umbrellas while watching the locals play volley ball. We went on a swim trek. Over the course of 7 days we swam 21 kilometers in the Sea of Cortez in different areas accessible by boat from the beautiful remote island of Espiritu Santo where our campsite was located. We booked this trip in February 2016 through a company called Swim Trek. Immediately after I made the down payment I told myself I needed to start swimming again. It had been quite a while since I had been in a pool. And then I didn’t really start training for vacation until May when the outdoor pools opened in DC. The first couple of swims were rough and I began to second guess my vacation plans, but soon enough I slipped back in to my swimming groove and began to get really excited. 

Throughout the summer nothing out of the ordinary happened in terms of my health. I continued to adapt to working through my digestion issues while trying to have a social life. I attempted to swim twice a week but occasionally my inflammation was real bad, and I was too uncomfortable to work out, so I would swim once or zero times a week. By the time November rolled around I wasn’t sure I had trained enough but was ready to go to Mexico to swim or possibly spend a lot of time on the boat with the trip guides watching everyone else swim. I was so excited to be traveling that either scenario seemed alright with me. I was most concerned about fitting my traveling pharmacy and all of my Julie-friendly snacks along with all of my clothes and swimming gear in one suitcase so I wouldn’t have to pay for extra baggage fees.

The Swim Trek: Every morning on the island we would be served two breakfasts by the island chefs;

cold breakfast and then less than an hour later, warm breakfast. One would think that eating that much food before hopping in the ocean to swim would be counterproductive, but it didn’t seem to cause any problems. After second breakfast the trip guides would show us a map of the morning swim, give us a brief history of the area and then help grease us up, before we all hopped in to the boats. Before you even ask, let me explain. When swimming long distances, repetitive motions can cause unfortunate rubbing in certain places from your bathing suit and produce a rash, which stings in the salt water. Gobs of Vaseline under your suit straps, around your armpits and other areas help prevent that issue. After the morning swim we would return to the island during the peak heat of the day for siesta’s and lunch. Later in the day we would return to the ocean for the afternoon swim. Then before we knew it, it was happy hour time, then dinner, star gazing, card games, more drinking for some, and then bed.

The Sea of Cortez was dazzling and the visibility was high. We saw gorgeous marine life everywhere we looked. We swam with whale sharks, sea lion pups, various fish species, sea turtles, sting rays… the list goes on and on. The island was beautiful too; great trails to explore, amazing star gazing at night and vibrant colors for sunrise and sunset. I could go on and on about the beauty, but I rather highlight some of the less than ideal aspects of this trip because life and vacation aren’t always as perfect as the highlights that make it to our social media accounts. 

Let’s talk about the camping. Those of you who know me are probably a little surprised to hear I willingly went camping. Hey guys, it was on a beach. No deer ticks. I was open to it. It was billed as “glamping” on their website since the tents are big enough to stand up in, and each tent comes equipped with two cots to sleep on. So far, so good. Right? In my head I think of “glamping” as more of an experience with portable air conditioners that keep one cool when the temperatures soar in to the triple digits on the remote desert island you are calling home for a week while on holiday. If you have ever tried to take a siesta in these conditions, you will understand why I believe that portable air conditioning should be a part of glamping. Also, if you have ever tried to apply sunscreen to your damp, sweaty body after taking a siesta in the conditions I just described, you know it can be a very trying experience. To be honest despite the uncomfortable heat, I was so exhausted from all of the swimming that I was able to nap in the afternoon and sleep just fine at night even though it was a little hard to breathe on occasion. As for the rest of the swimmer’s on the island, I can’t speak for them, but I did hear some complaints. 

Now I want to turn my attention to sea lice. Sea lice are microscopic baby jellyfish. A common misconception when I bring up sea lice is that they are like body lice or head lice. The water was warm, and the sea lice abundant. All of us got repeatedly stung on just about every swim we did. If you have never had the pleasure of being stung by sea lice allow me to tell you what it feels like. It hurts. One minute you are swimming along and the next minute it feels like you are getting an electric shock. Some of the shocks are mild and others feel super charged. It is unpleasant and the stings leave red itchy welts. A few people in our group even had painful allergic reactions. The unfortunate part about glamping on an island with no electricity is that there is no good way to really shower and clean your skin before rubbing Benadryl all over your sea lice sting welts. Salt water does nothing to help soothe the stings so while we could soap up in the water near the camp site, it didn’t really help much. There were two solar showers with foot pedals and thin narrow hoses that spit water at you but it was not really an effective shower for full body scrubbing. While the sea lice may be impossible to see in the water, they do form a gelatinous blob in the lining of your bathing suit. Gelatinous sea lice blobs are a delightful bonus to freak out about while pumping the foot pedal of the solar shower. 

Can you guess what the next topic is going to be? Yes! The “bathrooms”. There were two wooden outhouses off to the side of the tents. Within each wooden structure was the top of a toilet seat set on a wooden box with a plastic bucket beneath the box. We were encouraged to pee in the water along the shore of the island, and for everything else we would do our business in the outhouses and then throw sawdust into the toilet opening, and close the seat lid, so the bathroom didn’t get too smelly. The resident chefs of the island would switch the buckets out each morning. No questions were asked as to where they were dumping it, but we all knew. 

To be honest, while it makes for good reading, it wasn’t the heat, the camping, the sea lice, the showers or the bathrooms that made this trip less than optimal for me. It was me. I am exhausting. I have made a lot of progress over the past five plus years in terms of health and healing, because I made taking care of me my number one priority. When I think of vacation, I think of just dropping everything and getting away to relax from the day-to-day stresses of life (you guys may think a swim trek is the opposite of relaxing, but let’s set that aside for now). Unlike my job that pays the bills, taking care of me is not a job that I can take a vacation from. I must be meticulous about my treatment on a daily basis. I have to pay constant attention to the timing of my thyroid medication throughout the day in relation to other supplements and food, and I have to be careful about what I eat due to on-going thyroid/digestion issues. Coupled with the swim trek activity schedule, it was exhausting and a little stressful. The last thing I wanted to do was end up with gastrointestinal issues on an island with two community outhouses and/or while swimming. Luckily I didn’t. On the other hand, this was the second overseas trip I was able to take since my Lyme journey began and I was grateful to be able to take it. In fact I loved (most of) it. I had so much fun exploring, hanging out with great friends and making some new ones. I would have loved it just a little bit more if I could have left my second full time job at home. But this is unfortunately the new normal. I can't get away from it. Without it, I would have never been able to swim my way through a vacation in the first place.

I returned home from my trip feeling itchy and elated. Itchy from the sea lice bites. Elated that I was able to swim the whole time coupled with the fact that I felt pretty good while doing it. I jumped back in to working out and set the bay swim in my sights. [On a side note this is the second swim trek I have been a part of and I cannot say enough good things about this company and the amazing trips that they plan for their customers. Also the food that was freshly prepared each day for us on the island was out of this world]. 

At the beginning of March I reviewed my latest round of blood work with my doctor and things were looking up. He was thrilled with my progress. My thyroid numbers were the best they have been in years and my Hashimoto’s antibodies were the lowest they have been since I was diagnosed almost three years ago. My inflammation markers were low and there was no sign of candida. We actually discussed lowering my thyroid medication if I could hold the numbers through the next round of blood work. But as I mentioned above, by April things had taken a sharp turn in the wrong direction. I am hard at work trying to get back to those numbers from the beginning of March. 

And now we have come full circle. Before I go I need to tell you one more thing. I kind of lied before when I told you I didn’t have a similar type story to share in regards to the Independence Day panic attack fiasco I led off with last time. A month or so ago finally got around to watching Stranger Things. Many of my friends had told what a great show it was when it first came out. What nobody bothered to tell me is that it was probably going to scare the pants off of me and cause me to have nightmares and to have to sleep with the lights on. 

Q: Can I blame that on anxiety from my health issues?

A: Probably not. One might say I am easily startled. One also might say Stranger Things was not meant to be scary. All I can say is that I was happy I wasn't hooked up to electrodes for this series. 

The New Normal (Part 1)

The last time I wrote was in January. I guess it’s about time for a 2016 update.

I was watching an intense movie during a nuerofeedback session this past February. My heart felt like it was about to beat out of my chest. I really wanted to cover my eyes but I couldn’t because the session was in progress. Once the electrodes have been placed, any movement skews the brainwave data and makes it hard to follow trends from session to session. Beads of sweat lined my forehead, and my hands were balled up into fists despite the discomfort being caused by my fingernails that were embedded in my sweaty palms. As tightness in my chest spread towards my shoulders I wondered, is Will Smith's acting causing me to have a heart attack? And then it happened. One minute I was watching a team of doctors perform an autopsy on what they thought was a dead alien, and then the next minute the dead alien jumped off of the table. At that same moment I screamed and jumped right out of my chair. 

The following two questions have probably come to mind:

1. Why was she having a panic attack while watching Independence Day?

2. Why has it taken her till 2016 to watch Independence Day?

Those very good questions will eventually be answered.

Starving and anxious; that about sums up how I have been feeling for most of the year. I have also lacked inspiration to write. Actually, lack of inspiration is not the issue. I’ve lacked time and focus. I’ve been keeping a busy schedule. Overall I have more energy and less fatigue, and I am thrilled about that. Focus is my huge issue, I can't seem to find any.  

This past January I celebrated my birthday by going to Costa Rica with my sister for 5 days. It was my first international travel since I started my treatment for Lyme disease almost 5 years ago. While I was excited to be traveling I was also concerned about the usual things; wandering around with my traveling pharmacy and food. With my list of food allergies continually growing despite by best effort to heal my gut, I was worried I’d end up feeling sick and not enjoying my trip if I ran into digestive issues while dining on local fare.

While I am on the subject, let’s talk about my digestive issues. I am sure you would like to hear about my trip, but this isn’t a travel blog, so you're stuck with a digestion discussion. For a month leading up to my departure I sampled many snacks to see if they were worthy of traveling with me. It’s a good thing I sampled them ahead of time, because they were not all as “Julie-friendly” as I thought they would be. One afternoon at work I ate a granola-ish bar with lunch. Later that evening I got really dizzy and nauseous and didn’t link it back to my lunch-time snack, until I threw up around 10:30 pm. You may be wondering how I know it was my snack that made me sick. I can answer that. Almost 8 hours after I ate it, most of it ended up undigested staring back at me from the bowl of my toilet. Gross indeed! And for those of you who are wondering about the aftermath of throwing up with invisalign trays in my mouth, I hate to disappoint you. Due to the dizziness and nausea I was experiencing I knew what was on the horizon, and had removed the trays from my mouth prior to the main event. That particular snack did not make the cut. Between the food and my traveling pharmacy, it’s a miracle I had room to pack clothes.

Costa Rica was awesome. We snorkeled, kayaked, drank a lot of coconut water straight from the source, climbed into a cave, hiked around a volcano, luxuriated in the hot springs, and explored various beaches and a fair amount of the country side in our rental car due to my poor navigational skills. Road signs are few and far between in Costa Rica. For the record, my sister has superior navigation skills but I can be so darn convincing when I'm positive we are heading in the right direction.

The Costa Rican food was about 95% Julie-friendly and I loved it. In fact, I couldn’t eat enough. I was shoveling food into my mouth throughout the whole trip. I blew through my backpack of snacks alarmingly fast and was basically licking the plate clean every time we sat down to eat. The change in my appetite was quite sudden and one evening my sister said “I haven’t seen you eat this much since you’ve been sick”. To be quite honest, neither had I! 

We left Costa Rica and its 90+ degree sunny weather and flew back to DC in time for a snow storm. We played in the snow for a few days. Despite being bundled up in layers upon layers of clothing, it was easy to see that I had lost a significant amount of weight in the eight days we spent together. In fact, January was just the beginning. Both my appetite and weight loss continued to increase through mid-March. In addition, my anxiety and inability to focus spiked, I became very irritable and the brain fog reappeared. I thought I was losing my mind. On a side note, it is not easy to follow a low sugar, low carb diet when you are starving, but I managed to stick to it because I had been working so hard on getting rid of the candida (fungal infection) and I didn’t want to compromise that aspect of my recovery. 

It turns out my appetite, anxiety, inability focus, irritably and brain fog all stemmed from a butterfly-shaped gland that lives in my neck. Doesn’t that description make my thyroid sound way more awesome then it really is? 

Right before Christmas of 2015 I reviewed my latest round of blood work with my doctor and I was still extremely hypothyroid. By the time I went to Costa Rica, about three and a half weeks later; my thyroid suddenly started producing a lot of hormone. It went from hypo (under active) to hyper (over active) and I was still taking the same amount of synthetic hormone because this new development was not known to me or my doctor. This obviously had quite an effect on me. I didn’t get another round of blood work done until mid-March so I experienced a roller coaster of emotions for a good three and a half months until my thyroid medication was adjusted according to my blood work results. If you need a quick refresher on my thyroid, go to the link I included in the first sentence of this post and look for the section titled “What is Hashimoto’s Thyroiditis”. 

The sudden change in my thyroid piqued my interest and I went in to research mode and discovered some interesting information. The first bullet point doesn't pertain to me, the second and third do. 

• Some thyroid patients can have both Hashimoto's and Graves's disease antibodies, which causes the thyroid to cycle up and down through hypothyroidism and hyperthyroidism. This is not a very common situation. 
• Currently I only have antibodies for one autoimmune disease, and that's Hashimoto's. I hope to keep it that way!  
• Some patients who have Hashimoto's thyroiditis are diagnosed during a period when they are hypothyroid. In a thyroid that is failing due to autoimmune disease, the thyroid can frequently stumble in to overdrive, and then back into under-activity. This could be a sign that the thyroid is on its way to burning itself out. 
• Even though I was first treated for Lyme in the mid-90's, my thyroid was never tested until this second Lyme experience I am still knee deep in. What I know is that I have been hypothyroid for at least four and a half years, and about a year ago I started testing positive for Hashimoto's antibodies. Chances are high that I have been having thyroid issues since the mid-90's. 
• It is also possible to experience hypothyroidism symptoms, but periodically have hyperthyroidism symptoms that also appear. Hyperthyroidism symptoms don't cancel out hypothyroidism symptoms, they more often are added to them. 
•  Earlier in this post I mentioned that overall I am feeling more energized and less fatigued. On some days I feel both at the same time, and it's a weird. 

I've grown tired of thyroid talk, let's return to the nuerofeedback. Here’s a refresher just in case you missed the neurofeedback post last year. 

In the midst of my high anxiety I foolishly decided to watch Independence Day despite knowing that a fast-paced movie with a lot of explosions was the last thing I should have chosen, but I had recently seen a crappy movie trailer for Independence Day Resurgence and realized I had never seen the first one that was released in 1996. When I saw the doctor had the movie in her office I took it as a sign that I should watch it. 

I did skew the data for that particular session after I screamed and jumped out of the seat. Leading up to that point, the data showed that I was clenching my jaw and was highly agitated. We had a good laugh about it once my heart rate returned from the stratosphere. At that point I really had no idea what was causing my high anxiety. What I have since learned is that the thyroid gland may be small, but it’s powerful. And it can really affect all aspects of your well-being when it is compromised.  

There is a lot more to share in terms of 2016 regarding the Lyme and thyroid madness. And I still owe you a nuerofeedback follow-up which I promised at the end of the post I just linked you to for a refresher. It refreshed my memory too!

But for now, I’m going to admit something embarrassing and call it a day. I still haven’t seen the end of Independence Day. I’ll get around to it eventually.

To be continued… (In a timely manner)

I'm Not Out of the Woods Yet

I’ve shared information with you about the controversy regarding whether Lyme can be chronic or not. I’ve discussed how being a Lyme patient is a difficult road to navigate because it affects everyone differently. What I haven't mentioned is the reception that chronic Lyme sufferers often get from some of the folks who not believe it can be chronic. There is a rabid need to make it known that everything a patient is going through is in their head. While everybody is entitled to their own opinion, sometimes it is just best to keep your comments in your pocket. I have chosen not to associate with people who can’t appreciate the fact that I have made dramatic changes in my life in order to live with an illness they cannot understand.  In fact, I have been very lucky to have extremely supportive friends and family who don’t doubt my illness. Not everybody has this support in the world of chronic Lyme. The reason I bring this up now is because as of about two and a half months ago I became a Hashimoto’s Thyroiditis patient, and the difference in the reactions that I receive if I say I have an autoimmune thyroid disease versus chronic Lyme disease are stunning. A lot more sympathy is coming my way regarding my thyroid, yet the thyroid issue is recent and is not the catalyst for all of the life changes that I have had to make over the past four years. These days, nobody rolls their eyes at me when I say I am gluten free because of my thyroid. However if I say I’m gluten free because of Lyme disease, some folks are quick to tell me that I can’t be sensitive to gluten if I don’t have celiac disease. Everybody is an expert, but that’s another story. Speaking of eye rolling, as I am now in my fourth year of treatment, one of my favorite questions I often get asked is: “Do you think you still have Lyme disease, or are you just dealing with the side effects of being on antibiotics for so long?” My answer is usually along the lines of:  “Yes, I still have Lyme disease and I am trying to navigate the fallout from the antibiotics while JUST dealing with life”, but I never dive deeper into the evidence to support my answer.  Since we have just kicked off a new year, and I am feeling chatty, I am going to present the evidence. In order to do this, I need to take you back to spring of 2015. Ready? Here we go… 

The Lyme Hiatus

Hey guys, I took a hiatus from Lyme disease last spring. If only it were that simple... 

Sleep is a vital component for healing from Lyme disease. Lack of sleep keeps the immune system down and a healthy immune system is needed in order for the Lyme to go into remission. At different points throughout this blog I have spoken about my issues with sleep due to the Lyme disease. At first I was having trouble falling asleep, and then I was having trouble staying asleep. And then a year or so after my diagnosis while I was still struggling with sleep, my upstairs neighbors had a baby and chose to dodge the condo rules about covering 80 percent of the hard wood floors with carpet. Long story short, in early April of 2015 I put my condo on the market because my living situation was detrimental to my recovery.  

Living without a footprint in order to keep my condo “showroom ready” turned out to be tough with all of the cooking I do and my counter top  full of antibiotics, supplements and herbals that I take three times daily. It got old, real fast. In an effort to make things easier I packed up all of my herbals and stopped taking them for a few months because walking around with them on the weekends was a real drag since I couldn’t be home for most of the day when my place was being shown.  I also got a little lax with food and did a lot more dining out and a lot less cooking. Some pizza here, some tacos there, some ice cream here, some French fries there… you get the picture. It was nice to take a break from part of my treatment and the strict diet.

Anybody care to guess what happened when I started the herbals back up?

Within a week I started to exhibit flu like symptoms and had a couple of herx reactions, which meant the Lyme and co-infections were alive and well. I surprised them by adding the herbals back into my treatment and jump-started a new round of die off. 

The reason I am on the anti-inflammation diet is to help reduce toxins in my body which help my enzymes stay in balance. They are a natural therapy for treating chronic inflammation and they help break down food into absorbable components. Adding more inflammation through food to my inflammation was a bad idea and it created the perfect environment for the bacteria to thrive. It took a good two months for me to work through the fallout from my herbal break. 

Let’s Talk About Those Side Effects

Here are everybody’s favorite topics to talk about: Gut issues and yeast!

Let’s start with leaky gut/digestion. At one point this summer, just about everything I was eating was causing me to have an allergic reaction to it. Loosening up my dietary restrictions earlier in the year took a toll on me. There is only so much itchy and stinging scalp, hands and feet one girl can take before she starts researching leaky gut remedies. For the past few months I have been drinking a cup of bone broth a day like it is tea. I could make soup, but really, I don’t have time for that.

BONE BROTH? Yes, bone broth. It is exactly what it sounds like. Think about the wild animals on the National Geographic shows. Ever wonder why they go straight for the bones every time they make a kill? Inside the shell of the bone there are essential nutrients; anti-inflammatory and gut-healing proteins, healthy fats, and a wealth of minerals. Once the bones are boiled down the broth is very gelatinous, but when you warm it up, it is like a normal broth but with extra benefits. It can improve joint health and digestion. It provides minerals, and helps detox the liver. Also the proteins in bone broth are strongly anti-inflammatory which can help with leaky gut, which coincidentally, is a precursor to autoimmune diseases.

If you’ve been reading this blog for a while you may be wondering what happened to my veganism. In reading up about healing my gut, as well as advice from my doctor, I decided to switch gears. Healing my gut is crucial, and as I just mentioned, there are properties within animal proteins that also help boost your immune system and heal the gut. When I first started eating meat again, my body wasn’t digesting it very well. But things have been looking up in the digestion department recently, which may also be directly related to me going off the one remaining antibiotic I was on. But don’t get too excited about that, we’ll discuss that later.  

Now let’s turn our focus towards the candida. Candida is a fungus which is a form of yeast and its main job is helping out with digestion and nutrient absorption. But when overproduced, candida can break down the wall of the intestine and penetrate the bloodstream releasing toxic by-products into the body which affects the immune system and can cause leaky gut. With prolonged antibiotic use yeast is inevitable (yes I take probiotics and eat fermented food). My almost sugar free diet is also inspired by candida. 

Two and a half months ago, on the same day I was diagnosed with Hashimoto’s there was some good news to get excited about in regards to my blood work. My CD57 white blood cell count had been steadily improving over the course of the year and was almost to the low end of the normal range. I was told I could stop taking the antibiotic, which would help my gut and candida issues. The plan was to see if my body could maintain the white blood cell count with the herbals, supplements and diet.

Side Note: The human immune system consists of several different types of white blood cells with one category being called Lymphocytes. Lymphocytes consists of 3 subcategories of white blood cells known as B-Cells, T-Cells, and Natural Killer Cells. B-Cells are responsible for antibody production, while T-Cells and Natural Killer Cells are responsible for killing foreign invaders. CD57 is a natural killer cell. "CD" stands for "Cluster Designation" which is simply a molecule on the cell that gives the CD57 cell its identity. CD57 natural killer cells are designed to kill many types of bacteria, but are uniquely attracted to Borrelia burgdorderi (the Lyme bacteria) due to its type of cell wall. Borrelia are believed to be capable of reducing the total amount of CD57 natural killer cells in the human body. It's currently unknown how Borrelia accomplishes such a task, but the results of this action are used as a means of confirming a diagnosis or determining remission of Lyme disease by some physicians. 

What is Hashimoto’s Thyroiditis?

Hashimoto’s disease is a condition where the immune system attacks the thyroid tissue. The thyroid gland is part of the endocrine system which produces the hormones that coordinate many of the body’s activities. The resulting inflammation from Hashimoto’s disease often leads to an underactive thyroid (hypothyroidism).  Symptoms include fatigue, brain fog, weight gain, cold hands or feet, hair loss, constipation, infertility, depression, and the list goes on and on. Basically your body slows down, normal cycle of hormones slow down and you slow down. Originally I was dealing with a secondary hypothyroidism which means it was not autoimmune and then about two and a half months ago I started testing positive for the antibodies for Hashimoto’s. Let’s take a look at what can cause Hashimoto’s:

• Lyme disease:  Apparently a lot of people with Lyme disease end up with Hashimoto’s Thyroiditis. The Lyme bacteria have been found to cross react with thyroid tissue which triggers the autoimmunity by what is known as molecular mimicry.
• Leaky Gut: Hyperpermeability or “leaky gut” syndrome is when the cells lining the intestines become “leaky” due to inflammation. Leaky gut is most often associated with autoimmune diseases. I’ve read in quite a few places that reversing symptoms of an autoimmune disease depends on healing the lining of the gastrointestinal tract. Any other treatment is just symptom suppression. When the cells of the gut wall become larger than usual, protein molecules can then get through the membranes and can be absorbed before they are completely broken down. 
• Molecular Mimicry [Enter Stage Right] is when the molecules of a certain food look similar to the molecules of the actual tissue in your body and your body can’t decipher what is the invader which causes your body to attack its own tissue all the while thinking it is an invader. In the case of the thyroid, both the gluten and casein (dairy protein) molecule are similar to the thyroid so the body tags all three as intruders. If I do not want to have to take thyroid medication forever, I will need to heal my gut and cut out gluten and dairy permanently. While symptoms of an autoimmune disease can be reversed, the disease cannot.
• Other causes: Infection, weakened immune system, stress hormones, adrenal fatigue, stress – environmental, physical or emotional, and nutritional deficiencies.

Oh hey guys! Looks like I really am the perfect candidate for Hashimoto’s and additional autoimmune diseases! It’s all about the gut. I may have to double up on all the bone broth I have been drinking after reading what I just wrote. In addition to the bone broth, I need to keep my diet clean. See how this all fits together now?

Remember a handful of paragraphs ago when I mentioned before that my doctor had told me stop taking my one remaining antibiotic and I told you not to get too excited. Well, now is as good a time as ever to discuss what happened when I stopped taking my antibiotic for a couple of months. 

My current status

Since my immune system was showing signs of strength I was given the go ahead to stop the antibiotic so we could focus on the gut and candida and continue to try and find the correct dosages for my thyroid medications. Over the course of the two and a half months without the antibiotic I became very blah and lethargic and stopped working out. My motivation was nowhere to be found.

A few weeks after going off of the antibiotics I had a herx reaction and the pressure on my spine between my shoulder blades reappeared. It was nothing compared to this original occurrence but I certainly wasn’t excited to welcome it back. I have had varying degrees of pressure and inflammation in that area ever since. Shortly after that, the pain in the arches of my feet and around my heel made an appearance. And then my old buddy Mr. Night Sweats came back with a vengeance. At first the night sweats weren’t too bad, but since Christmas I usually wake up at least once a night cold and shivering and covered in sweat. And then I have to move myself to a dry part of my bed and go back to sleep. Hey guys, nobody has ever used the words "night sweats" and "glamorous" in the same sentence.

I had another round of blood work done last week. Let’s start with the good news!  After a year of tinkering with the thyroid medication dosages my thyroid and TSH numbers are right where they need to be.  That concludes the good news portion of this broadcast. The rest of this news is that my CD57 count fell, my autoimmune antibodies spiked and my cadmium levels are elevated. Cadmium is a metal which my doctor is baffled about because I am not a smoker nor do I paint. I guess those two activities can aid in increasing your cadmium levels. The elevated metal does however coincide with the resurgence of my symptoms and the weakening of my immune system. My total white blood cell count suggests I am better off on the antibiotic. My doctor can have a bit of a dramatic flair from time-to-time which I totally appreciate so I am going to put a direct quote in here from him.  “By stopping the antibiotic we let the monster out of the cage”. I have started back on the antibiotic. The dosage I had been taking prior was suppressing the Lyme bacteria and not killing it. So now I am on double the dosage as we try to blow it away. What does this mean for my gut? Well…. Um… uh….

So anyway, four years in, and I am not out of the woods yet.  As you can see I still have a very active Lyme infection mixed in with everything else. My body is under attack and it’s attacking itself. I am feeling a little lethargic and very achy, and I am not sure what the next steps are. Since I have been back on the antibiotics I have frequent spells of nauseous and dizziness. I’ve got blood work again in two months and then a new treatment plan will be hatched.

This was not a feel-good welcome to 2016 post, but I assure you I am doing okay. I’m very frustrated, but okay.  I am working through some set-backs, but in the whole scheme of things I am still doing much better than I was when my treatment began a little over four years ago. I started working out again last week, and I kicked the new year off with an unexpected week-long staycation. Somehow I lost track of my “use or lose” vacation time which appears right on my pay stub that I look at every two weeks. I mean really guys, who has time to look at vacation hour tallies with all of this other stuff going on?

Happy New Year! 

About Those Teeth...

Last time you heard from me I wrote my first race report in almost four years. Would you believe me if I told you that the driving force behind my return to the pool was my mouth?

To extract, or not to extract, that is the question. Remember this? 

Shortly after I ripped off Shakespeare in the post referenced above, and seriously contemplated getting at least one of my root canalled teeth pulled, my friend Erin informed me that she had been going to an integrative dentist for over ten years whom she trusts with her life, and encouraged me to get a second opinion since he has experience with Lyme disease patients. So I did. And now this is where everything gets a little weird.

Based on the reception I received when I walked into the office and announced my arrival, it is safe to say that my friend Erin is a major celebrity in the eyes of all the staff that she has come in contact with in the practice. After getting hugged by a handful of people and being told how wonderful  my hair and my friend  Erin are, I discussed my concerns about the recommendation I received to extract my root canalled teeth with the dentist. After performing his own round of muscle testing on me he made the following recommendation. “Keep your teeth for the time being, extracting them can cause additional issues and I don’t see an immediate need to do so. What I really want to focus on is the high levels of mercury and aluminum in your body and your TMJ. 

If anybody is keeping track, this is now the third time that a practitioner has done muscle testing on me in the last year or so without knowing the results of my blood work and has accurately detected the high levels of mercury and aluminum that I can't seem to get rid of. Fingers crossed that during my next round of blood work there is improvement on that front. 

TMJ

The temporomandibular joint (TMJ) is a hinge that connects your jaw to the temporal bones of your skull, which are in front of each ear. It lets you move your jaw up and down and side to side, so you can talk, chew, and yawn. Problems with your jaw and the muscles in our face that control it are known as temporomandibular disorders (TMD), but many people (like me) call it TMJ after the joint. TMJ can be caused by injury to your jaw, the joint, the muscles to your head and neck, grinding or clenching your teeth, arthritis in the joint and stress which can cause you to tighten your facial muscles or clench your teeth. TMJ can cause severe pain and discomfort which can be temporary or last for many years. It can affect one or both sides of your face. Symptoms include pain or tenderness in your face, jaw joint area, neck and shoulders, and in or around your ear when you chew, speak, or open your mouth. Some people experience jaws that get stuck or lock in the open or closed mouth position and others experience clicking, popping, or grating sounds in the jaw joint when they chew or open and close their mouths. The list goes on and on. 

When the dentist mentioned TMJ I was surprised since this was the first time in my life that anybody told me I had TMJ. I always thought it had to do with lock jaw, and that is one issue which I have ever experienced. I expressed doubt and in turn he highlighted the muscle weakness on the left side of my body caused by my TMJ and told me some bizarre news about my tongue. 

First he began by stating that before he started his examination he could tell by talking to me that the left side of my body was much weaker than my right. I could have told him that too since I am right handed and have always been stronger on my right side. He then performed a resistance test on my extended arms by pushing on my wrists and asking me to maintain their position. And like any right side dominant person, my right arm didn't move and my left arm dipped considerably. After a few variations on the arm resistance test, he pinpointed the exact spot on the left side of my neck which causes me a great deal of discomfort on a daily basis and then made the following statement: "Not all of your pain and discomfort is caused by inflammation from the Lyme disease. Some of it is structural and is caused by your TMJ. I can fix that". He then handed me one of those firm cylinder shaped cotton balls that dentists use to keep your lip from touching your teeth during cleanings, and asked me to place it between my molars in the back of my mouth on the left side and to bite down. He then did another round of the same resistance testing which yielded no difference between my right and left arms in terms of strength and no neck pain in the spot on the left side of my neck. In fact, where my muscles and tendons are usually very tight and can be strummed like guitar strings, they were quite relaxed and it felt great. Once the cotton ball was removed the same round of resistance testing was performed again and the muscle weakness and neck issues were present once more. He then asked me if I felt a difference when I swallowed with the cotton ball in my mouth. When I shook my head no, he told me that in order to swallow my tongue had to do acrobatics in my mouth because of the issue with my jaw. I am sure the look on my face was priceless. I had no idea what he meant and I can assure you that my tongue is not an acrobat. All of this seemed very bizarre, yet I was intrigued by the cotton ball in my mouth that had temporarily fixed my neck and muscular issues on the left side of my body, so agreed to get fitted for a splint. 

The Splint

A "splint" is a removable dental appliance used to balance the muscles and ligaments of the head, neck, shoulders and jaw joints. It is designed to fit over the biting surfaces of the lower teeth and guide the jaws into a functional, comfortable, and relaxed position. It can also reduce jaw pain and damage to the teeth by providing a cushion of protection as it helps reduce clenching and grinding of the teeth and jaws during the day and night. The splint requires functional adjustments as the condition of the muscles, ligaments and nerves of the head, neck, and shoulders and back change and improve. 

To the left is a picture of my splint. For four months I wore it about 22 hours a day, and only removed it when I ate and brushed my teeth. For the first week I could barely open my mouth and was in a lot of pain. Think of braces for your jaw. In addition to the pain, I developed a lisp for a few days and drooled a lot. For about a month, every time I would yawn the left side of my jaw and face would start to quiver because it was impossible for me to open my mouth past a certain point. I eventually got used to the splint and after a while it did not bother me at all and it actually felt weird when it wasn't in my mouth. I have nothing but positive things to say about the splint. Actually, I take that back. I have one complaint about it, and I will get to that shortly. First here is a list of interesting things that happened once I started wearing it:

• My feet stopped falling asleep on the elliptical machine. One of the many reasons I do not like the elliptical machine, is that within five minutes of being on it, my feet fall asleep. Three days into my splint wearing experience I was on the elliptical machined consumed with thoughts of my sore jaw when I started to get a tiny hint of pins in needles in my middle toe on my right foot. It was a weird feeling since it was just a pinpointed spot and not both of my entire feet. As I glanced at the clock to see how long I had been on the machine I almost stopped dead in my tracks. I had gone twenty-five minutes without both of my feet falling asleep. At first I thought it was silly to think that somehow the splint that I had been wearing for only three days had something to do with it, but during subsequent trips to the gym, the results were the same. 

• Within a week of wearing the splint, the left side of my neck felt decent enough for me to start swimming again, which led to this. 

• This past August I wrote about my experience with neurofeedback and I owe you a follow-up on my progress, but that is not what I am about to discuss. Today I would like to explain how my nuerofeedback sessions helped shed some light on my crazy tongue. Previously I mentioned that a minute long base line of my brainwaves is captured at the beginning of each session. For a long time, the doctor thought I was having muscle spasms during my sessions due to the fact that during both the base line capture and throughout my sessions, there were random disruptions of my brainwaves that came and went very quickly which had nothing to do with what I was watching. During the sessions I am not able to see my brainwaves being recorded, but during the minute long baseline I am able to watch the screen. Early on I realized it wasn't muscle spasms causing the interruptions in the monitoring of my brainwaves, it was me swallowing. But I never really thought anything of it. Once I began wearing the splint, all of that stopped. As it turns out my tongue is an acrobat after all. 

Every four weeks I would go to the dentist to get the splint adjusted. The first time I went back for an adjustment I asked the dentist if it was possible that the splint was responsible for my feet not falling asleep on the elliptical machine. He said yes. And then I mentioned there was one spot on my right foot where I was still experiencing pins and needles when on the elliptical. He put one of his fingers in my mouth and did muscle testing with his free hand, and when he came to the tooth which caused weakness in my muscles he took the splint out of my mouth, shaved off an area on the splint corresponding to that tooth, and put it back in my mouth. And that solved the foot thing once and for all. These types of adjustments went on for a while. Sometimes I would arrive with random pain in my hips, knees or shoulders and a simple adjustment to the splint, would do the trick (I am sure more goes in to this than what I just explained, but I am not a dentist I am just the patient). One evening as I was sitting down to eat dinner a thought flashed through my head as I realized my teeth on the right side of my mouth were touching in places they never touched before and my teeth on the left side weren't even touching when the splint was out of my mouth. I kept my thought to myself for a bit and then one day I mustered up the courage to ask the dentist if the next step to getting my jaw to rest in the proper place was moving my teeth. And now this brings me to the one complaint about the splint that I mentioned earlier. I now have braces for the second time in my life. And they are making me cranky.

To the right you will find one of 44 sets of invisalign trays that I will be cycling through every two weeks until my trays run out. I no longer wear the splint as I have trays for both the top and bottom of my mouth. In theory invisalign is pretty awesome. They take molds of your teeth and send them off to the company so the aligner trays can be created per the plans from your dentist. The trays gradually shift your teeth in to place as you switch them out according to schedule. They even send you a cool 3D view of your mouth which shows beginning to end views of the process. There are no metal brackets or wires that need to be tightened. Doesn't sound too bad, does it? 

The first two weeks consisted of me having a lisp again and drooling a lot. And of course my teeth were very sore. Much like the splint, I wear the trays all of the time except when I am eating. The great thing about the trays is that they really are invisible unless you are standing really close to me and studying my mouth. Every time I change trays I get a headache for a couple of days and my teeth get incredibly sore, hence my crankiness. After those couple of days pass, I don't realize how sore my teeth are until I take the trays out in order to eat. The trays fit like a glove, and sometimes it is a struggle to remove them. 

Four weeks ago when I went to get new trays they put "buttons" on some of my teeth. Buttons are kind of like plastic brackets. They are glued to certain teeth, according to the plan and they make the trays fit tighter to add to your discomfort. Well most likely they aid in faster movement. This past Monday I went back to the dentist to get more trays and was surprised with some new hardware. Two metal hooks were glued to the side of my back left and right molars and now I have rubber bands that connect from my molars to my k9 teeth. In the new set of trays there are special notches located on the top of my k9 teeth to accommodate the rubber bands. While the trays may be invisible, the rubber bands are not. I am thinking about getting some brightly colored rubber bands just for the heck of it. 

Tomorrow is November 25th. You know what that means, right? Four years since my Lyme disease treatment began. This past summer I was doing very well and it seemed as if I had turned a corner. I am bummed to report that I have taken a giant step backwards in my recovery. Or maybe just two small steps back. Or perhaps I am stepping sideways. I really don't know. What I do know is that in about two years, my teeth are going to be very straight.

Happy Thanksgiving!