Author: Susan Westbrook

A Lot of Good Things Started with This Red Ball.

Roughly two years ago I started to see a chiropractor mostly by happenstance. He had been treating my daughter and he seemed smart and competent, so one day I casually mentioned that maybe he could help me. He asked what my issue was, and I basically asked how much time he had.

I couldn’t get into my whole life/lyme story so I started with the issue I thought would be most easily addressed by chiropractic care. For about three years, my left leg had been pulling up. It caused pain and discomfort day and night and I felt very unbalanced. Also, I could not easily raise my arms over my head. Several other practitioners had tried to help me, but without success.

The chiropractor, Dr. Mike, had me lay on his table for a quick assessment. Right away he said something was very wrong with my spine and said I needed an x-ray. Turns out I had about a 25 degree curve in my lower spine. That would account for my leg pulling up. Good news. But the even better news is the curve would be impinging on nerves that impact……you guessed it, digestion. And yes, I call that good news. Any time I find something fixable that is contributing to my problems, that’s good. I knew the spine wasn’t causing all my GI problems, but I also knew fixing it wouldn’t hurt anything.

Back to my initial assessment with Dr. Mike. After the x-ray he examined the rest of my body. At a certain point he grabbed my butt and upper thigh (it’s OK, it was non-sexual and my husband was standing right there) and basically told me it was all terrible. He said my legs and butt were completely atrophied and I had no muscle. Further, he said this was problematic because the adjustments he needed to make to straighten my spine would not hold due to my lack of muscle.

He said I needed to get to work, and asked me to start doing squats while putting an exercise ball between my back and the wall. I think he said to just start with 10. Sounds easy. It wasn’t. At that point I felt super crappy every day. My stomach always hurt, I frequently felt nauseated, and the idea of jostling myself by moving up and down just didn’t sound appealing. Plus, I had no muscle and no motivation. I will remind you, the last thing I did before I got sick was run a half marathon. In my past life I loved to exercise. But this was my present life, and exercise was something I only dreamed about.

I started seeing Dr. Mike three times per week. At each visit we’d go through the same routine:

Dr. Mike: “So, have you started doing the ball squats yet?”

Me: “Um, no.”

Dr. Mike: “I really need you to do that so my adjustments will hold.”

Me: “I know. But I just haven’t been able to do it.”

I felt like a complete failure after every visit. Why couldn’t I get myself to do the damn squats? It was out of character for me to completely ignore a doctor’s recommendation. In fact, throughout this journey I have been an extremely compliant patient because I’m so driven to regain my health. Tell me what to do, and I’ll do it.

Apparently, that didn’t apply to ball squats.

Finally, one day before my visit to Dr. Mike I decided to do the damn squats. Not because I wanted to, but because I didn’t want to face the humiliation of not having done it. Yet again.

Well, doing the ball squats sucked. I truly had no muscle, and it was an enormous chore. Nothing about it felt good. But I did it.

Around this time I was also trying to do a little more walking. I thought it would be good for body, soul and digestion. I’m being generous with the word “walk” here. My “walks” usually consisted of going maximum three blocks, at a snail’s pace, often with my husband’s hand in the small of my back, helping me maintain forward progress. So I was killing it.

So, I was “walking” and I was ball squatting, excelling at neither. Then one day when I was walking I noticed the most infinitesimal of changes. Just a tiny bit more spring in my butt and legs when I walked. This led to more walking. Which led to more ball squatting. Which led to more walking, and you get the story.

Now, nearly two years later, my walking and squatting have evolved into what I call “The Hour of Power”. I do it at 5:45 AM, and it consists of a half hour on the treadmill (going fast, no snail pace), and a half hour of strength training and stretching. I have actual, visible muscle in my arms, legs, butt and abs. I do the Hour of Power every other day. On the alternate day I walk outside for three and a half miles. Also at 5:45 AM.

I have been doing this routine for over a year, but I haven’t written about it because it has taken a year for me to believe I am actually doing this on a consistent basis. In the past when I’ve tried to exercise I’d be able to do it for a while, and then I’d suffer some health setback, and my exercise program would go out the window.

But this time, it seems like it’s sticking. Progress.

Today was an Hour of Power day, and it felt fantastic. I felt strong and alive. The whole time I was working out I just kept saying to myself “I can’t believe I’m doing this. It feels like a miracle.” In fact, I say those words pretty much every time I exercise or go for a long walk.

When I  finished working out this morning, I sat on the red ball that started it all, and I wept. Tears of joy. But also tears for my long journey to the heart of darkness and my slow march back into the light. I realized that while in the midst of my fight I didn’t have the luxury to take stock of how hard it was, how hard I was fighting or how much progress I was or wasn’t making. I just had to keep going. 

Now I feel well enough to embrace the possibility I’m getting better. I feel well enough to begin to let go of the survival instinct that prevented me from stopping to reflect on what I was going through. Now I do have the luxury to ponder how much I have suffered. How hard I have fought. How tired it all made me. Physically. Emotionally. And when I think about all that, I cry. It’s a healing kind of crying. 

I’ve grown pretty attached to that ball I once ignored. It’s helping me regain the physical vitality I so desperately missed. And it all started with a set of ten pitiful squats.

When the Numbers Do Not Reflect How You Feel.

These are my latest lab results. They suck.

My Lyme marker is at an all time low (it’s 15, and needs to be above 60) and my white blood count continues to be suppressed (very common combination for Lyme patients).

Based on these numbers, my Lyme doctor recommended re-testing for Lyme so we can try to get a handle of how pervasive the infection still is. He ordered two tests, both of which came back positive. I’m still waiting to get more context so I can understand exactly what the tests mean.

One thing I know they mean is I need to undergo another round of Lyme treatment. For those who have been following along, you know the treatment tends to make me very sick because I am extremely sensitive to medication, and I have weak detoxification ability, which makes it harder for my body to process and eliminate the medication on a timely basis (which is why it makes me feel so sick).

As you can imagine, this was not the news I was looking for, particularly because I have been feeling so much better. Apparently, simply reducing the level of Lyme bacteria in your body can allow you to feel better without actually being cured. Apparently, this is what’s happening to me.

My doctor said he would prepare two treatment plans for me to consider – one consisting of traditional antibiotics, and the other consisting of herbal antibiotics and supplements. If you know me, you won’t be surprised I took the herbal option without passing go.

So, I’m back at it. It’s been about a week, and so far, so good. No physical problems to date. The real problem is emotional at this point. It’s so disappointing to have to get back into taking a bunch of pills and liquids. And it’s disappointing to have lab results that are at odds with how I’m feeling.

This is the time I remind myself I am not my lab results. And this is the time I remind myself to continue to focus on how much better I’ve been feeling and how I continue to gain weight. 

Yes, this is a side track I was not expecting. But Hopefully, it’s a side track that will eventually lead back to the main road. The road that leads to the healthy, vibrant person I used to be.

I have to keep believing that, and I will.

The Emotional Side of Living on a Liquid Diet.

Per my previous post, I have been on a primarily liquid diet for the last seven months. I had to resort to this option when my weight hit rock bottom and I felt as though I was in crisis. The product I use is called Absorb Plus, and it has been very beneficial to me because it is a protein powder that is considered elemental, which means it’s pre-digested. So, no real work for my intestines. They simply need to absorb.

With the help of Absorb Plus, and determination and will and discipline, I’ve gained 19 pounds in seven months as of this writing. When you consider I did nothing but lose weight for seven solid years, it’s pretty much a miracle.

But miracles come at a cost, and chewing is the price I’ve paid for mine. Well, most chewing, anyway. I do eat real food for dinner each evening, but other than that, the only things that go in my mouth the rest of the day are water and Absorb Plus. Literally.

It was tough at first. So hard to sip while others chew. And of course there’s the social aspect. For me, going out to lunch means watching others eat while I sip from a mason jar. Snack time is chips for the family and a mason jar for me.

Do I sound like I’m complaining? I’m not really. Just framing the reality of my situation.

And then there is the emotional aspect. It’s scary to know a liquid diet is the only reliable way to maintain life.

But let’s put that all aside for a minute and talk about my experience. First, after about two weeks, I noticed a dramatic decrease in the GI symptoms that have dogged and tortured me and made my life a living hell for the last seven years. Then, ever so slowly, the scale started going up instead of down for the first time in years.

The more I sipped, the better my GI tract felt and the more weight I gained. And the less I cared about what I wasn’t putting in my mouth.

Now, seven months in, I can see the situation with complete clarity. I can eat food and feel badly and lose weight, or I can sip Absorb Plus and feel better and gain weight. I’d say that’s a pretty easy decision.

Is it easy every day? No. Is it easy most days? Absolutely. In fact, most days I don’t even long for food during the day. I’m just so happy to not be miserable. Food is an afterthought. Or a non-thought.

However, I wouldn’t be honest if I didn’t say there are two things I really struggle with. The first is I really miss crunchy things. I’m on a Paleo Diet (primarily fruits, veggies, healthy fat and animal protein), so even when I eat dinner in the evening, there’s not a lot (or any) crunch.  As such, I tend to struggle when people eat chips, etc. in front of me. I would never ask anybody not to eat something because I can’t, but it is hard to watch sometimes. I try to accept this as my reality.

The other time I struggle is at the end of the dinner hour. When all has been eaten, the dishes washed and the leftovers stored for another day. That’s when it occurs to me it will be a full 24 hours before I put solid food in my mouth again. And that’s when I get the urge to put something, anything in my mouth. It’s really not about hunger. It’s about wanting to feel the sensation of eating. Of chewing. Of taste and texture.

Sometimes this feeling is big, and sometimes it’s not there at all. Sometimes I put something in my mouth just to do it. Other times I just deal with the emotion I’m having and realize it won’t be improved by eating a random bite of food. I remind myself I’ve eaten. I’m satiated. I don’t have physical hunger. My hunger is emotional, and that’s best fed with compassion rather than food.

All in all I’d say the emotional price I pay for being on a mostly liquid diet is much smaller than the price I paid when I was constantly worried about my ever shrinking frame. I could see bones I never knew I had. I could count each rib easily. My abdominal area was hollowed out.

I don’t want to go back to any of that. So, if being on a liquid diet is the ticket out, I will gladly punch it. Every day.

Holy Cow, What a Beautiful Number.

In normal circumstances, it would be quite distressing for a five foot six inch woman to weigh 101 pounds. And believe me, it WAS distressing when I hit this number on my way down to a significantly smaller number.

But this time, I am hitting 101 on the way back up. This is a milestone on several levels. First, I’m finally back in triple digits for the first time in years. Second, I’ve now gained back half the weight I lost when my digestion shut down seven years ago. 

At times, I feel my weight gain is painstakingly slow. But putting it into context helps. I’ve been losing weight for 7 years, and I’ve gained half of it back in seven months. It’s pretty good when you look at it that way, huh?

You are probably wondering how I finally started to gain weight. After seven years of intense effort to heal my gut I made some progress, but never enough that would allow me to consume and digest enough calories to maintain my weight. The result was a slow march of weight off my body to the point I looked emaciated. 

Finally, with the help of an amazingly knowledgable and compassionate nutritionist named Ashley, I transitioned to a mostly liquid diet in mid-May of 2016. Ashley turned me on to a special protein powder called Absorb Plus that is considered elemental, which means it is basically pre-digested. As a result, my intestines don’t really need to do any work, they simply need to absorb. 

Each Absorb Plus shake packs a whopping 500 calories, which is far more food than I could consume in one setting. After a little trial and error, I settled into a routine that goes like this:

• Shake for breakfast
• Shake for lunch
• ½ shake for an afternoon snack
• Real food for dinner
• ½ shake for “dessert”

In this manner, I consume 1,500 calories per day from the shakes, plus what I get from dinner.

I decided to eat real food for dinner for a number of reasons. First, I just couldn’t fathom the idea of not chewing actual food at least once per day. Second, I wanted to keep my digestive tract acquainted with the task of processing real food. Finally, I love food and I love to cook, and I make dinner for my family every night, and I just couldn’t imagine all that cooking without any eating.

I was initially skeptical about the liquid diet, because I’ve tried all manner of protein powders and pureed foods in the past, and never found success. Most protein powders made me feel excessively full, and I could never get enough calories from pureed food.

But, I was literally at rock bottom with my weight, so I felt Absorb Plus shakes were my only option. 

The shakes gave me stomach aches for about the first two weeks, but then my GI symptoms started to slowly recede. And when I ate real food for dinner I felt better than I used to, most likely because my GI system was less taxed due to the liquid diet.

After seven months on Absorb Plus, I am no longer dealing with daily GI symptoms that include excessive fullness, nausea, stomach aches, and the general feeling of carrying a bowling ball in my abdomen. 

I am so relieved to have less GI distress and more weight, but there are still many unanswered questions. Namely, do I feel better because the liquid diet helped my GI tract heal in some way? Or do I feel better because my GI tract simply wasn’t up to the task of digesting real food? Will I ever be able to maintain my weight without Absorb Plus?

These questions are unanswerable at present, and in a way the answers are not important now. For now the most important thing is to keep doing what I’m doing until I weigh more.

One day at a time. One shake at a time. Watch me grow. Watch me heal.

I’m Back.

It would take a novel to tell you where I’ve been since I posted last.

The short answer is Hell.

However, thinking of Hell reminds me of a refrain from a country song by Rodney Atkins: 

If you’re going through Hell
Keep on going, don’t slow down
If you’re scared, don’t show it
You might get out before the devil even knows you’re there

That sums up most of 2016 for me. The good news is, I do seem to have gotten out before the devil noticed me. And that’s why I’m writing again.

As you’ll recall, I’ve been sick for a long time, and from very early on I was determined to use my experience to help others. I believed blogging would be a good forum for that. However, I’ve never been able to sustain my blogging activities because I never felt well enough on a continued basis.

I gave up the blog ghost all together this February because dispatching from Hell was impossible for me.  Living it was so devastatingly painful that I simply could not bring myself to re-live it by writing about it.

But Hell is now in my rear view mirror. Mind you, it is not miles behind me. More like inches. I can still feel the faint whisper of its fire on my back. Life is still difficult every day, but difficult in a manageable way, which is very different than difficult in an unmanageable way. And for me, that represents tremendous progress.

This blog post would be painfully long if I attempted to tell you the story of February 2016 to now all at once, so I will tell you a little at a time. I will start with the 30,000 foot view, which goes like this:

• I’ve been battling chronic lyme disease since 2009.
• Lyme broke my body first.
• Then it broke my brain. In spectacularly painful fashion.
• And that’s when all Hell broke loose.

Before I got sick I was a vibrant, healthy, happy, fit, balanced person. Since August 2009 every one of those traits has been slowly fading to black until I hit rock bottom in February 2016.

Yes, I had periods of progress and reprieve over the years, but the trend line mostly pointed down. One step up, two back.  I fought so very hard for so very long, but I just could not stop the steady erosion of the vital person I used to be.

By February, my weight, spirits and will were at an all time low. I woke up each day to a body and brain I could scarcely recognize as my own. 

And at the moment I was on my knees, at my most vulnerable, in roared the greatest torment I have known: debilitating, intractable anxiety. 

Severe anxiety is a thief, a robber in the night, hijacking the part of your brain where reason resides, leaving you with the constant, unrelenting, indescribable fear of… nothing. This fear is impervious to logic. This fear can be set off by the smallest offhand comment or stray thought. This fear starts as a speck of dust and explodes into a tornado in your brain. 

In my case, the tornado was a force that could not be stopped by any amount of common sense, meditation, mindfulness, exercise or talk therapy. 

It debilitated me. Humbled me. Haunted me and trapped me – inside my brain and inside my home.

This level of anxiety is not normal for me. I have been a worrier my whole life, and I’ve had my share of anxious moments, but this bring-you-to-your-knees-make-you-want-to-put-a-steak-knife-in-your-eye kind of anxiety was new to me. 

The anxiety combined with my long term physical issues was almost too much to bear. But note I said almost. I took it. I fought it. I got knocked to my knees over and over and over again. But the reason I’m here and writing, is I always got back up. Always. 

I am not cured of any of my physical or mental ailments, but I am on the path. Ever so slowly I am bringing my anxiety to heel. I am gaining weight, working out and putting on muscle for the first time in seven years. I do not have stomach discomfort every day of my life, as I did for so, so long.

So yeah. Things are looking up.

You may read about the long journey that has brought me to this place, by clicking here.

Paleo in Mexico.

Whenever possible, we stay in a home with a kitchen when we travel. It just makes everything easier. We are currently in a very authentic, non-touristy city in Mexico, which means there are not a lot options for dining out. That’s OK with us because our house has a spectacular view and a wonderful kitchen, so we are happy to eat in. 

We made this concoction last night. It doesn’t really have a name, so let’s just call it Delicious (sorry if it sounds like I’m bragging). It was also very easy. We simply roasted diced zucchini and mushroom in the oven. While the veggies cooked, we put the skillet portion of the meal together, as follows:

1. We pulled a little meat off a grilled chicken we bought at a road side chicken stand – they are everywhere down here and they turn out the most wonderfully flavored birds. Plus, it’s fun to stop by the side of the road and pick up a chicken – we’re not exactly doing that in Minnesota.
2. We sauteed the chicken over medium heat for a few minutes just to warm it a bit. Then we cracked four eggs in the pan right on top of the chicken, lowered the heat to low and covered the pan.
3. We let the eggs slowly cook to our desired doneness, which for us is a little soft in the yolk.
4. Then we plated the chicken and egg mixture and gave it a Mexican flair by toping it with avocado, tomato, lime, and cilantro. We served the zucchini and mushrooms on the side.

It was delicious, flavorful, Paleo, and came together in less than 30 minutes. The perfect vacation meal. 

I Call This My “Box Of Life”.

I take a bunch of stuff every day: prescription medications, supplements, powders, liquids. It’s a bit of a hassle at home, and even more so when traveling.

But, this box has changed everything. It’s actually from a cleanse my husband did, but that’s another story.

At any rate, the box helps in two ways. First, it makes packing easier. I simply put everything in a compartment, and then drop the whole box in my suitcase. Sometimes I can get it in with my clothes, but on longer trips, I have to carry it in an additional suitcase (called my “Bag of Life”).

Prior to discovering the Box Of Life (BOL), I would have a random assortment of bins, plastic baggies and loose bottles in my suitcase. It never seemed organized and was always a hassle.

The BOL is also very useful once we get to our destination. It helps me keep everything contained and organized. Before the BOL, my stuff would spew all over the counter, making both my family and myself crazy. After the BOL, everything is smooth and good.

There’s more in there than meets the eye. The bins with the pink container are what I call my “smoothie packs” and contain the powders for my morning protein/supplement shake. I simply add the contents of a container to a blender along with unsweetened almond milk, and I’m in business.

You can see the tops of small zip loc baggies in the top left corner. Those are my evening “shake packs” (I ran out of bins). My evening shake contains support for my GI system, immunity and anti-oxidents. I simply add a pack to a small mason jar with unsweetened almond milk, give it a few shakes, and it’s done. Easy.

Also in the top left corner are the dropper bottles for the Byron White formulas I’m currently taking for Lyme Disease.

The bottom left corner contains the liquid hemp oil that is a powerful anti-inflammatory (I’m inflamed).

You can see the daily pill containers in the foreground. One each for breakfast, lunch and dinner.

The top right corner contains my digestive enzymes, magnesium powder and a powder called GI Revive, all of which help to keep my gut moving.

There is also a very small mason jar in the center bin – you can just see the silver top. That contains l-glutamine, which a supplement my doctor added just prior to leaving on vacation. Eventually, this will be in my “smoothie packs”, but I generally have difficulty tolerating new medications, so I didn’t want to mix the l-glutamine in with everything else in case it gave me a problem. So, I am adding it to my smoothie separately, and am slowly working my way to the recommended dose (which is always the way I need to do it – I can’t ever start right at the dose).

So, that’s pretty much it. It’s obviously a lot more work and hassle than not having to do all these things, but certainly much easier than it used to be.

And for that, I am grateful.

Seat 13D, Kombucha and Me.

We are on vacation. And while it’s a nice break from the realities of home, chores and winter, my reality always includes Lyme Disease regardless of where I am.

My daily life includes an extensive regimen of pills, powders, liquids, detox therapies, food prep, meditation and doctor visits. Combined, all these things help me feel relatively ok.

But it’s a lot to take on the road.

So when we travel, I try to make it as easy on myself as possible. The more of my routine I can maintain, the better I will feel, but only if the effort of it all doesn’t make me crazy.

In this case I was lucky to find Kombucha at the airport (I’m supposed to drink a bottle per day to put good bacteria in my gut). My daily Kombucha is important to me, but not so much so to make me want to try and finagle it through security. So, finding it on the other side was a happy surprise, but not anything I was planning or stressing about.

The unappetizing looking mason jar contains powders that help with GI function, energy and immunity (and it tastes better than it looks). I simply put the powder in the jar before leaving home, and then added water once we were on the other side of security. Piece of cake.

I decided to give myself a “supplement holiday” on our travel day, and it was nice not to have to juggle a jillion pills while en route (although, I did take the things that are absolutely essential for me, such as thyroid medication, anti-Lyme medication, and digestive enzymes).

We are staying in a house with a full kitchen, so I will be sticking to my Paleo diet, although I have been indulging in a few non-Paleo items, and I’ve quite enjoyed it. A nice break from the routine.

And that’s how I’ll bump along this week. Mostly sticking to my program while also taking a few liberties. That’s what vacation means for me. I’m grateful to be here, and grateful to feel well enough to get outside the lines a little bit.

This Was Lick-The-Bowl Good.

Sorry to brag, but I have to say last night’s Paleo dinner was stupid good. And stupid easy. Which is the beauty of it. It’s a simple crock pot chicken thigh served over cauliflower puree with a side of broccoli and carrots.

Don’t let the simplicity fool you. It was juicy, flavorful and seriously tasty. Especially on a cold, dark, Minnesota winter night.

Here are the details.

For the Crock Pot

• 3 pounds chicken thighs with skin and bones
  
• 2 cups vegetable or chicken stock (homemade if possible)
• 3 large carrots, peeled, sliced to ¼ inch coins
• Juice of 2 lemons
• Zest of 1 lemon
• ½ tsp of salt, or to taste (watch the salt if you are using a store bought stock that already has salt)

1. Place sliced carrots in bottom of crock pot
2. Remove fat from chicken thighs
3. Heat small amount of grape seed or coconut oil in a large skillet over medium heat, and brown the chicken on both sides (about 3-4 minutes per side). Do this in batches if necessary. HINT: Small amount of oil and patted dry chicken breasts = better sear
4. Place chicken thighs in crock pot.
5. Add about 1/8 cup of the stock to the pan you cooked the chicken in and reduce heat to low. Scrape up any browned bits.
6. Add the remaining stock to the pan, along with the lemon juice, lemon zest and salt.
7. Simmer for a few minutes to pull out the flavors and then pour over the chicken and carrots in the crock pot, making sure to include the browned bits.
8. Set crock pot to low and cook for at least 6 hours. 7 if you want it to fall off the bone.

For the Cauliflower Puree

This is so easy I don’t even use a recipe.

1. Simply chop a desired amount of cauliflower into roughly equally sized pieces and steam until tender.
2. Place cooked cauliflower in a high speed blender with a splash of non-dairy milk of choice and salt to taste. Blend. NOTE: Any blender or food processor will work if you don’t have high speed, but the consistency might not be as smooth.
3. Taste. Adjust liquid and salt as necessary.
4. If desired, you can do this ahead of time and simply heat up when you’re ready to eat.

The amount of milk you need will depend up on how much cauliflower you have and what consistency you want. As you can guess, more milk =  thinner consistency. Cauliflower  has a lot water, so you really don’t need to add much liquid. I’d say I do about ¼ cup for a small head of cauliflower. You really can’t mess this up, as it will taste good regardless of the consistency, so just go for it.

To Serve

1. Spoon the cauliflower puree in the bottom of a shallow bowl.
2. Top with chicken. Either on the bone or pulled into pieces.
3. Sprinkle the carrots around the edges.
4. Add steamed broccoli or other veggies if desired.
5. Spoon sauce over the whole thing.
6. Eat, lick the bowl, receive compliments.