Well That Was Interesting.

This post has nothing to do with lyme disease, anxiety or digestive issues, but yesterday was such an extraordinary day that I wanted to share.

My daughter and I decided to make a last minute trip to DC before she goes to college in a few days, so I packed up my liquid “food” and off we went.  Yesterday was our first day here, I and I will take you through it as it happened so you can experience it as we did.


The day started out ordinary enough. Since it was Sunday, and many museums were closed we decided to make it a “Monument Day”. We were lucky to find a parking spot close to the Lincoln memorial, so we began there. Such a stunning sight.

Then it was on to the Washington Monument.


From there we strolled down the mall along the reflecting pool, and stopped at the World War II Memorial.


Even though we now live in Virginia, we will always be Minnesotans at heart.

At this point, we decided to walk toward the White House. As we walked, we came across a few people carrying signs, such as these:



As we walked further, we came to what was a relatively small gathering organized to protest the one year anniversary of Charlottesville. I thought it was a great opportunity to show my daughter free speech in action, so we hung around a bit, and then continued on our way toward the White House.

That’s when things started to get interesting, as we basically wandered into a major protest, and a situation that felt like a police state.


There were groups of police and secret service like this EVERYWHERE.

It turns out the “Unite the Right” group of white supremacists that was responsible for the Charlottesville riot had a permit for a rally in front of the White House. In response, thousands of counter protesters from various groups showed up.

And we found ourselves right smack in the middle of it all.

First, there was the burning of a Confederate Flag.


Then the Antifa group showed up, and that’s when things started to feel a little scary.


It’s not every day that you come across a group of people dressed in head to toe black, with their faces covered. At this point, we were staying very close to the police officers, which were there in abundance.

When the White Supremacists arrived, the atmosphere changed. There was a charge in the air, and things began to get very heated in spite of the fact the police had created about a two block neutral zone between the opposing groups. At that point, we decided it was time to leave. I wanted to give my daughter a civics lesson, but she saw enough, and we had to put safety first.

By now, we had been walking quite a bit and were far from our car. So, my daughter had the big idea to jump on the Bird electric sharing scooters. If you are not familiar with how it works, it’s simple. Bird scooters are placed all over the city. You locate one on an app, then walk up to it, scan the barcode on the scooter, scan your drivers license and credit card, and you are off. When you’re done, you just leave the scooter wherever you want, and somebody else will eventually grab it. Brilliant.


Here is my daughter on her Bird on the outskirts of the protest. This is where things became extremely surreal. Here is the situation: the streets are closed for a few blocks on the perimeter of the protest area. The sky is darkening as a storm rolls in. There are police helicopters circling overhead. There are clusters of police officers everywhere we look. We can hear the chants from the protest in the distance.

And in this environment, my daughter and I are on our scooters, cruising down the middle of closed off streets in downtown Washington DC. Surreal is the only way I can describe it.


We passed many intersections that looked like this. They were closed off in this manner in order to prevent truck bombs.

Oh, and there were multiple snipers visible on the roof of the White House.


When we had enough of the protest scene, we decided to scooter over to the Supreme Court. About halfway there, the sky opened up, so we dumped the scooters under a tree and jumped into an Uber.

And things got interesting again. It turns out we parked our car near what turned out to be the staging area for the white supremacists, so numerous streets were closed, and the Uber driver ended up going around in circles trying to get us closer. Finally, he gave us an umbrella somebody else had left behind, and let us out several blocks from our car.

Fortunately, pedestrians were allowed on the closed streets, so we huddled under the umbrella and hustled about half a mile to our car. We had plenty of our own umbrellas in the car, so when we arrived there, we handed the Uber umbrella off to somebody else who looked in need. It was that kind of day.

Once in the car, we realized how hungry we were, so we headed to our vacation “restaurant” of choice. Yes, Whole Foods. I forgot to take a photo, but I had a very paleo meal of steamed vegetables and chicken.

After dinner, the rain had cleared out, so we decided to press on. And we had a glorious night. The storm passed, the light was beautiful, and there were hardly any people around, so we enjoyed a near private visit to the supreme court and capitol buildings. The stillness and quiet and the sense were are nearly alone in the world were absolutely lovely.


A few shots of the Supreme Court in evening light. Above and below.


We ended our epic day with a walk around the outside of the capitol.

IMG_1505 2

We took one last view of the Washington Monument from the Capitol before heading back to the car.


What a day.

I’m Decentralizing. And I Have Yeast.

IMG_0800How’s that for a headline?

As I often say, chronic lyme disease is very glamorous.

So here’s the background. When you have chronic lyme disease, you are basically dealing with problems on a parallel path. On one track is the lyme infection itself. You need to kill that mother if you are ever going to get back to health. So, that’s job number one.

On the other track, you have the cascade of problems caused by the fact you have chronic lyme disease. For example, the lyme treatment along with my compromised digestive tract caused me to lose 37 pounds (and I was only 118 to start with). Because of my weight loss, I developed osteoporosis and my thyroid began to underperform. The trauma caused by my inability to stop losing weight led to extreme anxiety. My slow motility makes me more susceptible to yeast and bacterial overgrowth in my GI tract. Additionally, I suffered from fatigue and brain fog that were caused by the lyme infection, but made worse by the treatment.

What a mess, right?

In the past, I have tried to find a single lyme literate doctor that can address all my problems. It just seemed like it would be easier that way. One stop shopping. Plus, the theory of many lyme doctors is if you kill the infection all the other problems will take care of themselves.

I employed this strategy for about five years. But recently, I realized it’s simply too much to expect one person to be expert on such a wide array of problems. Particularly because my GI problems and anxiety are so severe.

So starting a few months ago, I decided to unbundle my care to see if I can achieve better results. Here’s what I’m doing:

  • For lyme, I am only interested in non-antibiotic options at this point, as I do not tolerate them well due to my GI issues. The most recent therapy I’m pursuing is called Low Dose Immunotherapy, and it is being managed by Holtorf Medical Group in LA.
  • For my hypothyroidism, I started seeing a local endocrinologist. He suspected my hypothyroidism was a result of my low weight. Since I have gained 26 pounds in the last two years (thank you, Absorb Plus), he thought I could try discontinuing my thyroid medication. Thankfully, I was able to do so, as I now weigh enough for my body to properly regulate my thyroid. My lyme doctor didn’t think of that.
  • For my anxiety I have been seeing therapists for the entirety of my lyme treatment, but my lyme doctor was managing my medication, as I was seeing a psychologist who cannot prescribe medication. But in the late summer of 2017 I started seeing a psychiatrist who could prescribe medication. He adjusted my meds, and I am now on only a very small dose, with much better results. Note: I believe talk therapy does MUCH more for me than medication, but I still need a tiny bit of pharmaceutical help. For now.
  • For my GI problems, I recently started with a Functional Medicine GI doctor who was highly recommended by a friend who is a doctor. The first round of testing indicated a high level of yeast in my GI tract, so I am about to start a protocol to combat that. My doctor said this is just a first step, and there will likely be other testing and other issues to uncover, but he wants to take it one step at a time, so we are starting with yeast. BTW, the yeast is not the cause of my motility issues, but likely a byproduct. Getting rid of it will not provide the Big Cure, but should help matters. BTW number two: I’m actually thrilled when GI testing reveals a problem, as it gives me an opportunity to address something that might help me feel a little better.

It’s definitely more work to have a team of doctors versus a single source, but I am hoping it will be more effective.

Time will tell.

My Lyme Story in Photos.

It’s difficult to find the words to adequately describe the ways chronic lyme disease has ravaged my brain and body. As difficult as it is, I think it’s important to share my story. First, I hope to provide encouragement, help and support to anybody who may be in a similar situation. Second, I want to do my part to humanize this very real epidemic that is not treated as such by much of the western medical community.

Chronic lyme disease is under funded, not well understood, and there is no standardized care. Insurance companies don’t cover it, and non-lyme literate doctors don’t know what to do with it. As such, sufferers are often left to navigate their illness on their own.

My antidote to all that is to keep telling my story. As loudly and clearly as humanly possible. Maybe I will only help one person. And that will be enough. But, my greatest hope is to help many, many people. So, I will keep telling my story.

Today I will do so in photos. Take a little journey with me. From extreme good health, to extreme illness, and back to something that sort of resembles good health.

Emma Took ThisChippewa Falls, Wisconsin. Summer, 2005.

This is me at our cabin. I never got the name of the tick or saw the bite, but my best guess is this is the scene of the crime, as our cabin was in tick country, and I did some gardening in tall grass the summer I got sick.

As I look at the photo, I am grateful for how niave I was in that moment. Grateful for how much I didn’t know.

hotel-costesParis. August, 2005.

This is the second crime scene, AKA the Hotel Costes in yes, Paris, which is where we happened to be when my acute Lyme infection roared in. It was seriously the most romantic hotel I have ever been in. Sadly, I hardly remember it because I was basically delirious. Fevers, night sweats, searing headaches, severe body aches — everything hurt, including my hair, and I’m not kidding. It was an excruciatingly difficult situation.

I was so miserable that we ended up coming home early.

Not exactly the Parisian experience we were hoping for.

IMG_0741Saint Paul, Minnesota. August, 2005

Here is my positive lyme test. Two interesting things about that. First, it took three trips to the doctor before I was properly diagnosed, even though I had every obvious sign of Lyme. Second, this test, the Western Blot is the only Lyme test recognized by the CDC and thus, insurance companies. The issue there is this test is notoriously insensitive, which means many, many people end up with false negatives, and therefore, don’t get timely treatment. There are far more sensitive tests out there, but none are recognized by the CDC, which means they are not recognized by the western medical community or insurance companies. Are you starting to see the problem?

Big UnitSt. Paul, Minnesota. August 2005.

Ok, try not to be distracted by the giant zucchini.

This is about a week after my lyme diagnosis when I developed lyme-related Bell’s Palsy. If you look closely, you can see my right eye is drooping, and my mouth is slightly askew on the right side. My right eye would not close all the way at night, and I didn’t have complete control of my mouth, so I had trouble keeping liquid in my mouth at times.

Fortunately, my case of Bell’s Palsy was relatively minor and passed in a few weeks. Unfortunately, as I was to learn much, much later, the fact I contracted Bell’s Palsy meant the lyme affected my 7th cranial nerve, which is hard evidence my lyme infection broke my blood-brain barrier. In other words, the lyme infection infiltraated my brain. Not good. Obviously.

Irv Summer Vaca 2005 052Irvington, Virginia. August, 2005.

This is about a month after my acute lyme infection. I had finished my course of antibiotics, and was told the infection was gone, and that lyme would never be an issue for me again. Here I am feeling well again and enjoying my life. I thought lyme was firmly in the rear view mirror.


IMG_1407Chippewa Falls, Wisconsin. August, 2009.

Flash forward to August 2009 when I ran a half marathon. Look how fit, healthy and strong I am. I didn’t know it at the time, but this was the beginning of the end of my vitality.

These photos haunt me. If I’d known what was to come, I would have lingered just a little longer in that lovely space where the healthy people live.

Within two weeks, my digestion had shut down, and my 9-year journey to the pit of hell was just beginning.

Little did I know.

Maybe it’s good I didn’t.

IMG_2099New York, New York. November, 2009.

By this time, I was in deep trouble. My GI tract was basically not functioning. I had been to numerous doctors, including a $30,000 work up at the Mayo Clinic in Rochester, Minnesota, and nobody had answers.

While they had no answers, the Mayo Clinic did discover that my small intestine was barely functional. They performed a gastric emptying study where you are fed a radioactive breakfast, then are scanned periodically for 48 hours to see how well the food moves through.

After 6 hours, 6% of the food cleared my small intestine.

Normal, is 48-96%. I was in trouble. Big.

The Mayo Clinic diagnosed Idiopathic Intestinal Pseudo Obstruction, which is a fancy way of saying your small intestine isn’t working, and we have no idea why.

They offered me hope and a feeding tube. I said “yes” to the hope, “no thanks” to the feeding tube.

While I declined the feeding tube, I grudgingly agreed to a liquid diet, and I remained determined that my illness would not interfere with our life. As such, we pressed forward with a previously planned trip to New York, and I packed a suitcase full of Ensure.

Note: I now know Ensure is about one of the worst things you can put in your body, as it’s basically sugar and chemicals. But I didn’t know that then, and the Mayo Clinic recommended it, so I did it.

Another note: I felt like shit in that photo (and for most of the trip), but I was not about to miss the chance to ice skate with my daughter in Central Park.

It would be the first of many things I did through gritted teeth so as not to miss out on my life.


IMG_1226IMG_1021DSC_0012_2Virginia and Minnesota, 2009 – 2013.

We spent the four years of 2009 – 2013 on parallel paths. On one path, we did our best to just live our lives as normally as possible. We traveled, we laughed, we loved. I didn’t feel well most of the time, but we just kept going.

On the other path, we went from doctor to doctor to doctor in search of answers. In-state, out-of-state, it didn’t matter. We tried everything, read everything, went everywhere. Diet therapy, acupuncture, chiropractic, homeopathy, yoga, meditation, and things I don’t even remember.

I achieved modest improvement, but nothing like a cure. And no explanation for why my digestion turned off. Which of course, means no way to turn it back on.


IMG_8241Anaheim, California, Summer 2013.

Even though I was sick, we continued to make long range plans, as we figured I’d be better by the time whatever we planned rolled around. I never seemed to get well, but we kept making plans anyway.

In this case, we had planned a summer visit to Disney in California. By the time the trip came along, my GI issues were still very severe, and I had new symptoms: brain fog and severe fatigue. At this point, I was so weak, I had no choice but to use a mobility scooter to make my way around Disney. It was so humbling, but my choice was to take the scooter and go to Disney or not take the scooter and not go.

I took the scooter.

IMG_0740Vadnais Heights, Minnesota. June 2013.

As it turns out, we had a major breakthrough just prior to the Disney trip. A friend who is a doctor suspected my issues were due to chronic lyme disease, and referred me to a well respected lyme literate MD in our area.

I was tested for chronic lyme using the Advanced Laboratories test. In this test, they culture your blood, which allows them to actually see if lyme spirochetes are present. I was told they take a first look at the culture in ten days, but that it can be six to eight weeks before getting a definitive result.

My test came back positive in the first ten days.


I was actually thrilled when the nurse called with the results. Finally. A real diagnosis. We found the root cause of my problems. I thought I would be back to my old self in no time.

Oh, how wrong I was.

IMG_0132White Bear Lake, Minnesota. Summer 2013 to fall 2014.

I started long term antibiotic treatment for chronic lyme in the summer of 2013. I did seven months of pharmaceutical antibiotics and another seven months of herbal antibiotics. I looked like this for much of that time. In fact, my husband says when he thinks of my battle with lyme disease, the primary image is sees is me with my head in my hands.

To say I did not tolerate the antibiotic treatment well is an understatement.

When lyme spirochetes die, they release toxins. When toxins are released at a faster rate than your body can process them, it’s called a Jarisch-Herxheimer reaction, named after the physicians who identified the phenomenon.

While on antibiotic treatment, I had too many herxheimer reactions to count, and I can tell you they made me feel absolutely miserable. I typically experienced severe fatigue, nausea, body aches, and decreased appetite. It’s basically the flu without the vomiting. Sometimes I got so fatigued and nauseated I literally could not function.

One day, I finally just said “enough”. I couldn’t take it anymore, and nobody blamed me. They saw how much I had suffered. So I stopped all lyme treatment for the remainder of 2014.

A note: Long term antibiotic treatment is very controversial in the medical community. Some doctors swear it’s the only path to recovery. Others say the risks outweigh the benefits.

I’m not a doctor, so can’t give a definitive answer. But in hindsight, I would say antibiotic treatment was definitely a mistake for me. Nobody with severe GI problems such as mine should be given long term antibiotics.

I did it somewhat against my better judgement. At the time I was diagnosed, I had already been sick for four years. My doctor was extremely well versed in treating lyme disease, and he was also very persuasive. He made me feel as though antibiotic therapy was my only choice. He also seemed pretty convinced it would cure me. He was wrong on all counts, and is no longer my doctor. That’s a whole different story.


AnxietySaint Paul, Minnesota. Fall 2014.

I have been a low grade worrier my entire life, but in the fall of 2014 worry exploded into debilitating anxiety. I would have to write a novel to explain the ways anxiety has strained my life, my relationships and my well being. I became prisoner in my own home and in my roiling mind.

I have been fighting my anxiety as hard as I’ve been fighting lyme disease. Nearly four years since the initial onset, I am in a much improved place with my anxiety. I still get anxious every day, but anxiety no longer holds me prisoner, and I am slowly regaining my mental health every single day.

Extreme anxiety is a very common side effect of lyme disease. In fact, if you Google “lyme and anxiety” you will see pages and pages of results.


Saint Paul, Minnesota. January 2015.

By early 2015 I felt completely lost. I had been actively fighting lyme disease for a year and a half, and had seemingly nothing to show for it. In fact, I felt and looked dramatically worse than when I started. My GI symptoms were worse, my brain fog was worse, my fatigue was worse. My weight continued to fall. My optimism was fading.

Since the lyme treatment seemed to be doing more harm than good, I didn’t have the heart to take on any more. Instead, I spent most of 2015 detoxing. The goal was to help my intestines recover from the damage caused by the antibiotics, and strengthen my mind and body so I could withstand further treatment down the road.

The photo above is from the far infrared sauna. I almost always felt better after a good sweat.

I also did forty 2 hour sessions in a hyperbaric chamber (pictured below). The logic there is lyme cannot survive in a highly oxygenated environment. So, you wear an oxygen mask in the chamber and then the pressure from the chamber forces the oxygen deep into your cells where the lyme spirochetes are living.

After the hyperbaric chamber, I had a dramatic decrease in my brain fog and fatigue. Unfortunately, my GI symptoms did not improve.



This is the view from my resting chair. I have spent countless hours here since 2009. Having lyme is exhausting. Battling lyme is exhausting. Rest is essential, and often the only option. Some days I just can’t get out of the chair.



IMG_9050Tulum, Mexico. Spring 2015.

This is the first in a series of photos I will call “going down”.


As I mentioned, my fragile gut was basically destroyed by the lyme treatment, which meant my weight plummeted in spite of desperate, non-stop attempts to heal my gut and gain weight. It was a scary, anxious time.

Below are more photos of me shrinking. As you look at them, keep in mind the image of me running that half marathon.

IMG_9105Note my protruding breastbones and thin arms.

IMG_1271More bones.

IMG_6239I call these “marionette arms”. Terrifying.

IMG_9095For reference, my daughter is fourteen in this photo. Look at my arm compared to hers. My husband pointed out my wrists. Look how skinny and veiny they are.


4M0A8687 (1)Human skeleton.

4M0A8081More skeleton.

Look at me.

See me at my worst.

Remember what I looked like in the marathon photos.

This is what lyme disease does to people.


Saint Paul, Minnesota. Summer 2015.

Enter Vertigo. Out of nowhere, I developed a pretty serious case of Vertigo that knocked me flat for most of the summer of 2015. I have no idea if it was lyme related, but it happened while I had lyme disease. Miserable.


Summer, 2016.

2015 was a year of detoxing. And honestly, I don’t remember exactly what I did in 2016. I know I tried a few different doctors, with little to no improvement. By this point, I felt like I had tried just about everything, and didn’t know where to turn next.

Then I got my answer. My husband and I were on vacation, and when I went to put on my bikini bottom, it literally would not stay up because I had lost so much weight. I had long ago given up weighing myself because it added too much pressure. I knew I was continually losing weight, but didn’t know how bad it was until I had the wake up call with my bikini.

Incidentally, my anxiety was raging harder than ever at this point. So, right then and there on vacation, my husband and I decided two things:

  1. Forget about fighting lyme disease for now.
  2. Weight loss and anxiety were now public enemies one and two, and that’s where we were going to focus.


For the weight gain, I started with a new nutritionist, and after trying a few diet modifications that did not help, she suggested I go back to a liquid diet. Not Ensure this time, but a much healthier, easier to digest option. It’s called Absorb Plus, and is considered an elemental protein powder because it is broken down as far as food can be broken down. In other words, it’s pre-digested.

I was loath to go back to a liquid diet, but I weighed 81 pounds (my nutritionist made me weigh myself to get a baseline), so what choice did I have? I tried my first shake and…….I tolerated it.

And I continued having the shakes, and I continued to tolerate them.

My routine was full shake for breakfast and lunch. Half shake for an afternoon snack, real food for dinner (wanted to keep my intestines acquainted with actual food), and half shake for dessert.

Under this routine, my GI symptoms very slowly started to dissipate, and I ever so slowly started to gain weight for the first time since 2009.



This is what it looks like when we travel. I pack my Absorb Plus “meals” ahead, and just add water when it’s time to eat, which really means “drink” for me.


Saint Paul, Minnesota. 2016

As I said, I’m a little foggy on exactly what I did in 2016, but somewhere in there I started something called EWOT, which stands for Exercise With Oxygen Therapy. It operates under the same theory as the hyperbaric chamber — lyme doesn’t like oxygen, raising your heart rate while breathing oxygen pumps the oxygen deep into your cells.

I have no idea if it helped anything, but it certainly didn’t hurt.

This is what it’s like to battle lyme. You just keep trying things and hope they eventually add up to something.


Saint Paul, Minnesota. February 2017.

At my annual check up, my doctor recommended a bone density scan even though I was only 48 at the time. She suspected osteoporosis because of my weight loss. Unfortunately, she was right. It’s just one of the many cascade effects of chronic lyme disease.

I battle the osteoporosis by getting 10,000 steps most days, lifting light weights regularly, taking the stairs whenever possible, and taking calcium supplements.

I am very determined not to break a hip.


Saint Paul, Minnesota. November 2017.

I spent the second half of 2016 and most of 2017 focusing solely on gaining weight and reducing anxiety, and made progress on both fronts.

By November 2017 I was ready to go back into the lyme jungle by trying a newer therapy called Low Dose Immunotherapy, or LDI. I was treated by the Holtorf Medical Group in Los Angeles.

LDI is similar to treatment for allergies. Basically, you are exposed to thing thing that torments you in order to help your immune system deal with it more effectively. For LDI for lyme, you swallow a solution that contains a very small amount of dead lyme antigens.

I was given the smallest dose possible, and it knocked me flat for an entire week. The worst herxheimer reaction I ever had. I was literally non-functional. I was so nauseated,  could barely open my eyes.

My doctor at Holtorf Medical said the strength of my reaction suggested I was still carrying a large load of lyme bacteria.

I have taken a few more doses of LDI since the original, and I’m happy to report I had a much more mild response. Time will tell if that actually means anything.



Now that I’ve brought you to my lowest low, let me bring you some better news.


I have been on Absorb Plus for roughly two years, and as of today, June 3, 2018, I have gained a whopping 26 pounds. It has taken a long time and a tremendous amount of diligence and discipline, but it’s a tortoise and hare deal, and I’m OK with that.

As I gain weight, I also gain energy and I feel better. When your weight drops as low as mine did, your body just doesn’t have enough fuel to properly function. With the weight gain, things just seem to be working a little better.

The above photo is from Summer 2017. You can see I have a little more meat on my arm.

The below photos tell the tale of my weight gain.

IMG_7628My daughter is a rock climber, and she is wicked strong, so you can’t compare my arms to hers. But they are looking better, right?

IMG_7213I love this photo because I have a real live thigh. (And I love they guy I’m with).

IMG_1655With my weight gain came increased energy. Here I am at the top of a 1,000 foot elevation, 5 mile round trip hike in Telluride, Colorado. I don’t think I look any worse for the wear.

IMG_0306This is present day (May, 2018). My arms are back.


climbingMinneapolis, Minnesota. May 2018

For so many years when I was sick, I held on to the image of me stretching after running the half marathon. Lyme disease ripped me so far away from that person — both physically and mentally. I felt so diminished in mind body and spirit, and the evidence was right there in front of me in every single bone I could count.

I kept thinking if I could just get to a place where I could run again, I would begin to feel whole again. It got to the point where I would get a flash of anger every time I saw a runner. That should be me.

Somewhere over these last nine years, I let go of the image of who I had been, and began to hang on to the image of who I was becoming.

I am not the person I was before I got sick. I’m not as young. I’m not as strong. I’m not as fit. I’m not as confident.

But I’m more mindful. More grateful. More wise. More religious. More compassionate.

I have more problem solving and coping skills.

I know what true happiness is because I have seen true despair.

I’m more equipped to help my husband and daughter with life’s challenges because of what I have learned from suffering.

And…….I’m getting physically strong again.

I don’t care about running anymore. I let that go a long time ago. I probably have the physical stamina now, but honestly, my intestines just don’t want to be jostled.

But I can walk, and I do so nearly every day. And I can do squats, and lift weights, and carry heavy bags of groceries, and take the stairs instead of the elevator.

And I can climb walls.

My sweet daughter encouraged me to try her passion of rock climbing. I am a novice. In fact, I barely know what I’m doing. But I’m doing it. Somehow, I am getting to the top of that wall. And when I am on the wall, everything else fades away — my anxiety, my stress, my exhaustion for all I go through every day. It’s just me and the wall and the feeling of true accomplishment.

If you look closely at the photo, you can see a little muscle in my back and arm. It’s nothing like what I used to have. But it’s a start.

And that’s enough for me right now.

I’d like to say this story has a happy ending and I am 100% restored to health. Unfortunately, I can’t do that.

Even though I continue to gain weight and have fewer GI issues, my GI problems are not cured. Rather, the Absorb Plus is a giant band aid. At this point, I don’t know what my GI future holds, or if I will ever be cured. But my plan for now is to continue what I’m doing until I get to at least 115 pounds, and evaluate my options at that point.

It’s hard to know if you ever are rid of lyme. I have certainly thrown the kitchen sink at it. Does the fact my GI issues are not resolved mean I still have lyme, or is it simply that the damage to my digestive tract is permanent? Nobody can really tell me. Some doctors say it’s possible to fully recover from chronic lyme. Others say you never fully get rid of it, and the best you can hope for is to beat it into remission.

My four biggest issues with lyme are my GI problems, brain fog, extreme anxiety, and fatigue. My brain fog and fatigue are vastly improved. Not back to 100%, but much, much better.

My anxiety is still present but improving.

As I said, my GI issues are not resolved, and I will always keep trying.

Finally, I’d like to say this has been an interesting exercise. I experienced many emotions in the retelling of my story, but one thing stands out more than anything. This road has been incredibly hellacious, but somehow, I just kept going — both with my fight against lyme, but also with my life.

If I decided to put life on hold until my lyme was fully dealt with, you can see how much I would have missed. I often did not feel well when we traveled, and I almost always paid a price in terms of exhaustion when we returned, but it was worth it. It was always worth it.

Lyme disease has taken much from me. It has knocked me down over and over. But I got up. Every time. And I showed up. For my husband, for my daughter, and for myself. I have experienced so much of the last nine years through gritted teeth, but when I look back at the photos, I don’t remember the gritted teeth. I remember the fun and the love and the shared experiences.

Lyme disease can never take any of that from me.


Home From Vacation Saturday. In Bed Most of Sunday.

Here’s something that never ceases to amaze me. When we go on vacation, somehow, I always manage to hang on just long enough so my fatigue doesn’t interfere with the fun. Then when I get home, I collapse. It’s sort of like the car running out of gas just as it coasts into the garage.

It happens every time we go somewhere. The first morning home I will wake up feeling relatively fine, but as the day goes on and I attempt the tasks of re-entry, my brain and body begin to melt down. Slowly at first, and then all at once.

It’s not like I need a nap. It goes significantly deeper than that. My mind and body get so fatigued that I literally can’t think or function. It’s a sensation of being completely overwhelmed by the normal noise and rhythm of life. It’s hard to describe exactly what it feels like, but let’s just say it feels super crappy. I basically want to escape my own body because it’s so unpleasant in there.

Sitting in my resting chair brings no relief. Chilling with a movie is not an option – the stimulation is overwhelming. When it gets this bad, there are really only two remedies: bed and silence.

I have to be in bed with the covers pulled way up. The weight of the bedding somehow shuts out the stimulation and noise of life. It comforts and soothes. Releasing my head to the softness of the pillow allows my brain to relax and rejuvenate.

In these moments, I’m reminded of a hair dryer that overheats. It gets so hot it has to shut down in order to save itself. And there’s only one thing that will get that hair dryer to turn back on. Time.

It’s the same for me. As frustrating as it can be, when my brain and body shut down, the only option is to lay down and wait. It feels awful at first, but the longer I lay in the stillness and silence, the better I feel. After a few hours, I might feel up to reading. And after a few more hours I might feel up to sitting in a chair.  It usually takes most of the day for my fried circuits to cool down and start functioning properly again.

In an ideal world, I would always manage my life and my activities so I never got to this point. But sometimes, I put fun before fatigue management, knowing I will pay a price later. If I avoided everything that makes me tired, I would miss out on a whole lot of laughter, love and general enjoyment of life.

Did I enjoy the way I felt yesterday? Absolutely not.

But I most definitely enjoyed the seven days that preceded yesterday.

My daughter will be off to college soon, meaning family time is more precious than ever, and I am soaking up every last drop before my little nest empties out.

Sometimes, that family time comes at a price for me, but it’s one I’m happy to pay.