chroniclyme – Swimupstream

January 31, 2019February 1, 2019

The Things You Never Know At The Time.

This is my daughter and I as our cruise ship is about to leave the harbor late last December. Little did I know what was to come.

If you’ve been reading, you know I wrote about having vertigo after that cruise. It turns out I don’t have vertigo. I have been diagnosed with something with the potential to be much worse. For starters, the name is worse. It’s called Mal Debarkment Syndrome. Sexy, right?

Mal Debarkment Syndrome is a fancy way of saying my brain never calibrated to being back on land. It can take three to six months to recover. Sometimes up to a year. Some people never recover. I’m pretending I don’t know that last one.

My husband jumped right on the research bandwagon and found there is not much in the way of treatment, other than time. He did, however, find an option at Mt. Sinai Hospital in New York City. I have applied to be accepted as a patient, and am anxiously awaiting a response. Interestingly, the application form specifically asked if I ever had Lyme disease. Hummmm…….

In the meantime, I am doing my best to keep perspective and remain positive. Oddly, the diagnosis brought a sense of calm. First, it’s always good to have a name for what’s wrong with you. Second, now I can get my expectations in the right place. Before I knew about the three to six month time frame I went to bed each night hoping tomorrow would be the day I woke up feeling better. Then when I woke up not feeling better, I’d be disappointed.

Now at least I know what to expect. And what I can expect is to feel badly. All day. Every day. For a lot of days. It’s Ok. It really is. There are people who face so much worse, so I am not going to complain about this. And I do believe it will eventually pass. I just need to hang on.

So, what is it like to have Mal Debarkment Syndrom? I feel very nauseated all the time. I am also very, very tired. I think my brain is working overtime to sort itself out. Sometimes I feel like I’m on a boat. Sometimes I feel weird pressure in my head. Sometimes my head hurts. Sometimes it’s not too bad and I can sort of function. Sometimes, it’s horrendous and I have to lay down and cover my eyes. Sometimes I can look at a screen or read a book, sometimes I can’t.

I spend most of the day in a comfortable chair, remaining as still as possible. Any movement whatsoever makes my symptoms worse. However, there is one exception, and apparently, this is a classic symptom of Mal Debarkment Syndrome. I feel fine when I’m riding in a car. That’s because my brain thinks I’m still on a boat, and therefore it’s calibrated for being in motion. Consequently, when I get in a car, my brain thinks all is well. The only downside is my symptoms flare when I get out of the car. It takes fifteen to twenty minutes to recover and get back to feeling regular crappy versus extra crappy.

It’s a funny little syndrome, isn’t it?

I can’t tell you any more about it, because I delegated the online research to my husband. In the brief research I did, I came across the words “devastating” and “debilitating” a few too many times, so I decided information is not power in this case. My husband is on it, and is keeping me on a need to know basis, which allows me to maintain my optimism.

Today marks exactly one month since I stepped off the ship and into this crazy syndrome. I have spent much of that time in my chair, which has given me plenty of time to think. And I can really and truly say I can find the blessing in this. My mind and body are so exhausted from trying to keep up with life while also battling lyme and anxiety, and my current situation amounts to a giant time out I never would have taken. I need this rest. I am benefitting from this rest.

You would think I’d be restless with this much down time, but it’s actually the opposite. I have an odd sense of contentment. There is no way to power through this and just keep up with life, so my only choice is total surrender. And everything that’s not important has fallen away. I simply feel too crummy to get wrapped up in the small things I usually get wrapped up in. As a result, my life is distilled down to it’s essence. I’m grateful to see the sun rise. Grateful to have a husband and daughter who love me. Grateful all our basic needs are met each and every day. We have food, clothing, shelter, love, and access to health care. Anything else is a bonus.

I know that all might sound overly simplistic or cliched, but I can promise you those are my genuine feelings. And I believe you can only come to a place like this through suffering. In my experience, suffering blows the clouds away from the sun and shines a blazing light on the things that truly matter.

I will recover from this. However long it takes. And I will be better for having gone through it.

Now, on a much lighter note, this may end up being a bigger problem for my husband than me. Apparently, I will always be susceptible to this syndrome, so once I get better, I am supposed to avoid anything that could possibly trigger it, which means I’m not supposed to get on a boat of any kind.

My husband is an avid boater. He owns three boats. Being on the water is one of the great joys of his life. We live in a water town.

So, there’s that. My poor husband.

January 10, 2019

Turning 50 Did Not Suck.

Fifty is a big number, and I know many people get twisted about it. But I didn’t. Not even for a second. First, what’s the alternative? Not turning 50? I think I’d rather be 50.

We lost my beloved brother when he was only 46, and that has given me a new perspective on growing older. It is truly a gift. My Frankie would have loved the chance to be 50, so how can I even think about complaining about it? Can’t. Won’t. I’m grateful for every year. Every day. Every second.

Another thing that didn’t suck about turning 50: I felt so much love. From friends, family, and especially my husband and daughter. My heart was beyond full. And my husband hit it out of the park. We went away for the weekend, and he arranged for a private dinner prepared by a personal chef. It was such a joy to enjoy a delicious meal without having to go through my long list of food intolerances just to order a piece of fish.

Here are a few photos of the meal if you are curious. I never, ever get to eat anything this interesting and beautiful anymore. And it was all Paleo, with the exception of the cake. The cake was gluten and dairy free and very low sugar, but it wasn’t grain free, and I decided to look the other way on that one. Hey, if you’re not going to look the other way on your 50th birthday, when are you? To keep it safe, I only had a small portion though (I do not feel well if I eat sugar and/or grain).

So that takes care of the traditional birthday celebrations. But for me, there was something different about turning 50. I was 40 when I first got sick, which means I’ve been battling to regain my health for an entire decade. So in many ways, I’m happy to turn the page and see what this new decade has to say for itself.

Who knows how things will turn out, but if my forties were about surviving, I hope my fifties will be about thriving. Thriving means something different to me now than it did before I got sick. Chronic illness has a way of moving the goal posts. For me, thriving means reclaiming little pieces of me that have been lost to lyme disease and anxiety and a wrecked GI tract.

Thriving means rebuilding my life so I have a purpose greater than simply trying to stay alive. Thriving means changing my perspective to see myself as a person not a patient. Thriving means accepting my limitations and doing the most I can with what I have to work with (vs. feeling regret about things I can’t do anymore).

Thriving is a tall order since I’m still stuck in that place somewhere between sick and well. An unavoidable reality of my life is I will have to spend plenty of time trying to restore my health, but I want to spend equal if not more time figuring out how to thrive. I’m not exactly sure how I will do that, but I am sure I’m going to try very hard.

For me, life might just begin at 50. And that definitely does not suck.

August 19, 2018

Do I Look Sick To You?

I don’t think I look sick. And my guess is you don’t either. And if you saw me on the street, you may not even notice me. I might just sort of blend in with the “normal” people.

The truth is I live in that grey area between sick and well. I’m far removed from the days when I spent more time resting than upright, and when my lyme induced brain fog was so thick that I couldn’t read. (That lasted two years, BTW).

But I’m also far removed from the happy, vital, well digesting person I was before I got sick.

In that vein, let me dissect the above photo (taken while out and about in D. C.) to illustrate the ways in which chronic illness has affected me.

Let’s start with my shorts. For starters, they are not shorts. They are a bathing suit bottom. There is actually a bikini inside, which holds them up. They are a size too big so the waistband doesn’t touch me.

Now that I have you thoroughly confused, let me explain. Somewhere along the way, my entire body became hypersensitive to pressure, particularly in my abdominal area. As a result, I cannot tolerate any type of waistband. Or even a shirt or dress that’s tight through the middle.

In the summer I wear loose fitting dresses, or the afore-mentioned bathing suit/shorts. If I want a dress that’s more fitted, I buy it a size too big, and then have it taken in so it has a little shape but doesn’t touch me.

In the winter I wear leggings. I buy them several sizes too big, then take them to the tailor to have the elastic waistband removed and replaced with a drawstring so I can make them as loose as possible.

Let’s move up to my shirt. It’s slightly loose fitting around the middle. Again, nothing can touch me.

Now, my sunglasses. Note they are lightweight. Anything with a heavier frame than what I’m wearing hurts my head. Same for hats, which is why I’m in the screaming heat with an uncovered head.

On to my purse, which is more like a medical bag than a purse, as I am on a mostly liquid diet. It contains the following:

Two insulated cups, each filled with cold water and coconut oil (the oil adds much needed calories).
Two baggies containing the protein powder that will go into each cup at the appropriate time (the shake does not hold together if mixed ahead of time).
Digestive enzymes to help my body break down the shakes.
Oh, and a lipstick and some cash and credit cards.

The things you would normally find in a purse are the least of what I carry.

Why am I sharing this? I guess the moral of the story is you never know what somebody is facing. Looking at me would you ever guess I require a liquid diet to maintain life and can’t wear pants? I don’t think so.

I try not to use this blog to preach, but I’m going to just a little bit. Everybody is carrying something. Some people’s burdens are obvious. Other people’s are more invisible. And in a world that’s becoming increasingly uncivil, I think a little kindness goes a long way.

Be nice. You just never know.

August 19, 2018

Shaking My Way Around D.C.

Doesn’t everyone plop down on a curb when it’s “lunch time”? Well, I do.

My daughter and I enjoyed a fantastic get away to DC last week. It was quite the whirlwind, and we ended up being out and about for ten to twelve hours per day. That’s not the way we usually roll. We both tend to do best with a moderate amount of activity each day, along with plenty of downtime.

But we were enjoying the city so much that we ended up staying out from morning to evening. D.C. is like New York in that way. You walk out your door with a loose agenda, but then the flow of the city takes over and you end up bumping into fun and interesting experiences. It was one of those serendipitous trips where each day took on a life and flow of its own, and we just went with it.

While that was all very fun, it also created a bit of hassle for me, as I was continuously drinking a shake on the go. You’ll recall I’m on a primarily liquid diet because lyme disease destroyed my digestive tract.

In the photo above I’m preparing my “lunch” just as we arrived at the Holocaust Museum. There wasn’t anywhere to make my shake, so I just sat on the curb. Glamorous.

A few hours later we were strolling through the city when it was time for my afternoon snack. Again, there wasn’t anywhere obvious to make my shake, so we just stopped in front of a random building and I used a window ledge as my table.

I don’t really enjoy this portion of my program. For starters, my shake tastes best when it’s very cold. When I’m going to be out for the day, I store my insulated cups in the freezer overnight and then fill them with ice cold water before we headed out. But it was 95 and humid, and by the time it was shake time, the water was not that cold. Which meant my shakes were not that good.

In general, I have a very positive attitude about the fact I’m on a mostly liquid diet. In fact, I get upset with myself when I feel down about it because I know many people have far worse problems, and would happily trade with me. So, I do my best to be accepting.

But I’m human, and it’s hard to stay positive 100% of the time. I struggle most with optimism when on vacation. Food is part of the fun, right? New cities, new restaurants, treating yourself to things you wouldn’t normally eat. Unfortunately, I don’t get to experience that when traveling. I do eat solid food for dinner, but I’m on such a restricted diet due to food sensitivities that eating out in a new city is not much different than eating at home. And that makes me sad sometimes.

When I’m feeling sad about what I’m not eating, I try to focus on gratitude and perspective. Gratitude that my problems aren’t worse. Gratitude that my liquid diet most likely saved my life. (If you’re new — I bottomed out at 81 pounds before the liquid diet. My hair was falling out. I hadn’t menstruated in years. You could count every bone in my rib cage. In short, my body was failing.)

Is giving up chewing a reasonable price to pay for leaving that place of desperation? Of course it is. But it doesn’t mean it’s easy. Especially since I have no idea what the end game is. Will my body ever be able to process enough food to maintain life? Will I ever be able to transition back to a more normal diet? I have no idea.

That’s where perspective has to come in. My liquid diet is a difficult part of my life. But my life could be much more difficult than it is. And many people suffer in dramatically worse ways than I do.

In that light, how can I feel sorry for myself? How can I dwell in the negative?

Did I have a great food experience in DC? No, not really. But did I create priceless memories with my daughter on the eve of her new life in college? Absolutely. And I absolutely would not have had the stamina for that trip absent my weight gain from a liquid diet. No way. No how.

When I’m feeling down about what I’m not eating, I try to refocus my energy toward what I’m doing and experiencing. And I’m doing and experiencing a lot. And the reason I’m able to do and experience so much is because I’m sipping instead of chewing.

Now, that’s something to chew on.

August 11, 2018

Scenes From A Vacation.

I was too busy enjoying our vacation to write about it, so I will do a little recap now that we are home. First and foremost, it was a wonderful opportunity to spend quality time with our daughter before she heads to college. I will savor those moments with her for quite a while.

On the health front, it was a pretty good week for me. My anxiety was mostly in check, my energy was pretty good, and my GI tract was mostly cooperative. That’s about all I can ask for.

Here are a few highlights:

For me, provisioning is the first step in any vacation. Since this was a longer one, I shipped the two key ingredients of my life (I am on a mostly liquid diet): Absorb Plus Protein Powder, and MCT Oil (easy to digest) which adds critical calories to my shakes. Shipping in advance saves a lot of hassle, not to mention suitcase space.

We hit the beach the first day, and I had a big reason to smile. Namely, my bikini bottom fit.

Let me explain.

I’ve had many low points during my struggle with chronic lyme disease, but one of the lowest lows came about two and a half years ago when my husband and I were on vacation in Mexico. It was February, and I had not had my bathing suit on since the previous summer. I was still in the stage where I was losing weight at a rapid clip in spite of desperate attempts to gain weight. I had long since given up weighing myself because it was causing too much stress.

Well, my bikini bottom told the tale the scale didn’t.

As I pulled it on that February day I was horrified to find it literally would not stay up. My legs didn’t even fully fill the holes. It was one of the most terrifying experiences of my life, and a very tangible sign I was losing the battle with my GI issues.

My husband and I decided right then and there that something had to change, and fast. As soon as we returned from vacation, I started with a new nutritionist, who put me on the primarily liquid diet on which I remain today. I haven’t regained all my weight, but I’ve found a lot of it, and I had no trouble keeping my bikini bottom up last week. I don’t have the words to describe how good that felt. It’s also a nice reminder for the times when I feel a little down about all the things I’m no longer eating. I can eat real food and lose weight, or I can be on a liquid diet and gain weight.

It’s not really a difficult choice is it?

My daughter is obsessed with rock climbing, so there was no chance vacation would go by without at at least one trip to the gym. She’s been encouraging me to climb for years, but until recently, I’ve never felt well enough to give it a try. I’m definitely a convert, and I love it. On this day my body was pretty tired so I didn’t climb much. But it always feels good to get on the wall, and every time I do, it’s another reminder I’m slowly but surely getting stronger.

We tend to eat in a lot on vacation, as I feel best with home cooked food (and my family does too). But we also go out a couple of times. In this instance, I was thrilled to find a grass fed beef burger, which is the only type of beef I will eat as it’s much healthier than grain fed.

I’m on the Paleo diet, as it’s it is anti-inflammatory, which helps combat lyme induced inflammation. That means no bun. But the burger place was happy to do a lettuce wrapped burger for me, which was a special treat. This will sound funny, but on the Paleo diet, I rarely get to eat anything with my hands. Think: no buns, no bread, no taco shells, no wraps, no pitas. So it’s a real novelty for me to wrap my hands around a burger and dig in. I absolutely loved it. I supplemented it with a side salad, as fries are not on my personal menu.

I feel like I look a little tense in this photo, but I’m sharing it because it’s been a long time coming. We have been visiting the same beach each summer for many years. And every year my daughter does surf camp. And every year she asks me to do it with her. And every year I had to say no because I did not feel well enough or strong enough.

This was finally the year I was able to say yes. Yea.

It was way more exhausting than I expected, but I did it and was happy to have yet one more sign that I’m heading in a good direction.

The last night. The end of a vacation is always so bittersweet. Especially this one, as it’s also the end of an era in a way, as we are about to enter the college phase of our program. I was definitely sneaking in extra hugs whenever possible.

On the way home we had a long layover in the Atlanta airport, so there was time for a sit down lunch. Of course, that didn’t mean anything different for me, as I still had a protein shake. But it was nice to be able to enjoy it with warm water (my beverage of choice) out of a tea cup. You can see my shake cup by my right wrist.

I used to have a very hard time sitting at the lunch table sipping while everybody else chewed. But I’m to the point now where nine and a half times out of ten I’m perfectly fine with it. I just accept it as my reality. At least for now. And honestly, I’d rather sip and feel good than chew and feel badly.

And that’s a wrap on vacation.

Now I need to go and deal with the piles of laundry and mail……..

August 4, 2018

A Rare Treat on the First Night of Vacation.

When you are on a primarily liquid diet and eat only one meal of actual food each day, the definition of “treat” becomes relative.

For me, a few sips of coffee and a couple of bites of very dark chocolate (lowest sugar) constitute a big treat.

My GI tract is very sensitive to anything acidic, so I’m rarely able to tolerate things like coffee and chocolate. But when I’m having a good day, I definitely take advantage of the opportunity to enjoy those things.

I can only tolerate a small amount of coffee. Maybe ten sips. So I usually just sip from my husband’s cup when I’m up for coffee.

But sometimes I order my own cup even though I will throw most of it away. I know that’s wasteful on many levels, but it’s also restorative.

Let me explain.

I was a coffee drinker before I got sick. Now, my only beverages are water and protein shakes. Literally.

I miss the simple pleasure of grabbing a coffee. Of not even having to think about whether or not it will go down ok.

It’s such a small thing, but ordering my own cup vs. sharing my husband’s helps me tap into a time that was pre-all this. A time when I had coffee. Just like everyone else.

And as I continue to rebuild my life, it is healing any time I can tap into even the tiniest part of my former, healthy self.

I can’t think of a better way to start vacation.

August 1, 2018August 1, 2018

My Morning Walk In My New Town is Scenic, But I’m Not Seeing The Beauty.

I walk at dawn most days, and that time alone while the world is still largely asleep is critical to keeping my anxiety at bay.

Normally, my heart fills with gratitude for the opportunity to experience the beauty of the earth at that hour. The light, the stillness, the nature sounds, the silence. It’s all worth getting out of bed for, because nothing looks or feels the same once the sun is fully up and the world starts moving.

I treat these morning walks as a moving meditation. My mind is usually quiet, and I tend to be fully present to the sights and sounds around me. When I notice I’m thinking about my day ahead, or a problem, or whatever, I try to turn my attention back to the birds and the beautiful plays of light.

But ever since moving, I’ve been fully stuck in my head. I am unable to be present with my surroundings because truth be told, I don’t like them very much.

It truly is beautiful and charming here. Take a look:

What’s not to like, right?

For me, a lot. For starters, it’s not Home. And nothing beats Home.

Next, as lovely as our little town is, it’s ninety minutes from the nearest metro. That means ninety minutes from Whole Foods (where I used to go nearly daily), ninety minutes from Target, ninety minutes from doctors, therapists, etc.

As it turns out, that’s a problem for me. I’m used to easy access to all the things I need to make my life work, and my life isn’t working very well without it. I feel suffocated by the lack of resources here. This is a fantastic place to vacation, but living here is a whole different story. At least for me.

Also, as an anxiety sufferer, I require a certain degree of anonymity in order to feel at peace. And anonymity is hard to come by in a town of 400. As a result, I feel exposed. There is no privacy.

Sometimes when I’m out for a walk, certain emotions will come up, and I like to just take a moment to sit on a bench somewhere and cry. It’s healing. Well, I don’t dare do that here, or it will be all over town that Sue Westbrook was crying on a bench at 6 AM. I’m not kidding.

I wake up in a panic every morning. The feeling of wanting to escape is enormous. When I’m out for my walk I go past the road that leads out of town. Most mornings I take that road and just keep walking. I don’t know where I think I’m going, but walking out of town feels like the right thing to do.

In hindsight, this move feels like a really bad idea. After suffering from debilitating anxiety for over three years, I was finally getting back on track and starting to live my life again. I was making progress. I was heading in a good direction.

And now, here I am in an environment that is the polar opposite of the one in which I was doing so well. Why did I think that would be a good idea? In hindsight, I should have understood I couldn’t change everything and expect it to be OK.

You may be wondering why I moved in the first place. Love is the short answer. My daughter is headed to college about 90 minutes from here, and she needed us to be nearby. Plus, my husband is from here, and he moved to Minnesota for me, so it’s my turn to return the favor.

Deep down, I think I knew this move could be a mistake for me. But it was right for my husband and daughter, so I felt my only option was to go along with it. And while I had deep reservations, I hoped everything would work out once I got here.

Well, pretty much the opposite happened. Everything I was afraid of came true, and then some. And this was not a self-fulfilling prophecy. I came with an open mind hoping for the best.

But my body has had a violent reaction. My anxiety is raging, and painful depression is coming and going. Depression is a new one for me, and I’m not enjoying it.

I’m in trouble here.

Fortunately, my husband is incredibly supportive, and once we have our daughter safely tucked into college we are going to make some changes to help me adjust. We are exploring options that will allow me to spend more time in a city environment where I am more comfortable and will have more access to the things I need in order to be happy and balanced.

Hopefully, spending a day or two outside our little town each week will help me feel more content when I return. That’s the plan anyway.

I don’t know for sure how it will work out or what we will do. But one thing I know for sure — I fought incredibly hard to pull myself out of a death spiral of anxiety, and I’m not giving up the ground I’ve gained. No way, no how.

I’m grateful my husband is in lockstep with me on that. With his help and love and support combined with my determination and grit, I do believe I can pull myself out of this. It’s not going to be easy, and it’s going to take time, but I’m going to figure this out.

July 30, 2018July 30, 2018

In the Haze of Moving, A Pause to Overnight my Urine to Minnesota.

You could call that gross, or you could just call it a routine day in my life.

In the crush and mess of moving, I’m doing my best to stay on track with managing my health. Frankly, I’m not doing that great of a job. I’m working too hard, I’m not resting enough, and I’m not making enough time for the things that help me feel well — both physically and mentally.

However, I did make time to keep on track with my GI doctor in Minnesota. He’s currently treating me for yeast overgrowth in my GI tract. I really like my GI doctor, so I decided to work with him long distance when we moved. Fortunately, he has patients all over the country, so he’s used to that.

But, working with a doctor long distance means getting him the information he needs to monitor your progress, so that’s where the urine comes in. While handling my own urine is not my favorite thing to do, I just accept it as part of my reality. And honestly, it was pretty simple. I just collected it, froze it and then overnighted it.

The good news is I’m making progress on the yeast front. My initial infection rated 2.75 (whatever that means), and I’m down to a 1 now. I think the goal is to get to zero, so I’m definitely headed in the right direction. This is very good news considering I had great difficulty tolerating the recommended treatment due to my extreme sensitivity to medication. My doctor wanted me to take three different anti-microbials in fairly high doses, but I was only able to tolerate one of them at the very lowest dose. You can read more about that here.

Since I am so sensitive to medication, this is definitely a marathon not a sprint, but my doctor says I just need to keep at it slowly and steadily, and that’s what I intend to do.

I actually feel a little better in the GI department. Not go-out-and-have-a-burger-and-fries-better. It’s more that I’m eating the same things I usually do, but I feel better doing so. I count that as progress, and I’ll take what I can get.

My GI problems remain a mystery. I have very slow motility, which means my GI tract moves very, very slowly. In fact, it moves so slowly, there is no possible way I can digest enough calories in a single day to maintain my weight. That’s why I’m on a mostly liquid diet.

All my lyme doctors blame my motility disorder on the fact I have chronic lyme disease. Just another side effect. Non-lyme doctors are not so sure. The Mayo Clinic diagnosed Idiopathic Intestinal Pseudo Obstruction, which is a fancy way of saying your small intestine isn’t really working, and we have no idea why. I’ve met with several GI doctors who are sure my issues are not lyme related, but don’t have any other answers.

Long ago, I decided to let everybody be right. If the lyme doctors think treating lyme will also treat my gut, then great. Have at it. If GI doctors think treating other issues related to my GI tract will solve my problems, they can have at it too. So that’s what I’m doing. Low Dose Immunotherapy (LDI) seems to be keeping my non-GI lyme issues in check. On the GI front, I just continue to plunk away at whatever comes up. Right now, it’s the yeast overgrowth. Once that’s under control, my GI doctor wants to look at other things, and we will see what that yields.

That’s the best I can do for now.

Sometimes I take stock and think I’m doing pretty well. Then I remember I only eat one solid meal per day, and that sort of scares me. How well can I be doing if I’m on a mostly liquid diet?

But the truth is, the liquid diet probably saved my life, as I was 81 pounds and still falling when I started it. I can’t imagine how much lower I could have gone while still maintaining life. So, I’m far removed from that horror.

But I’m also far removed from normal eating and digesting. That’s a hard place to be. In fact, I got a few tears as I typed that. I’m not sad about the food I’m not having — I got over that long ago. I’m sad because I wonder about my future. Will my digestion ever be restored to something that feels more normal? Or am I looking at it?

When I get into thought patterns like that, I remind myself to take a step back. I have to remember I have 100% control over the effort I put in every day, but zero control over the ultimate outcome. That’s out of my hands, and the less I think about the outcome, the more free I feel.

Which brings me back to today. I don’t have the answers to my complex GI riddle. However, I know I have yeast overgrowth. And I know taking care of it will help me feel incrementally better. So, I will focus on that. And when I’m done with the yeast, I will focus on the next thing, whatever that may be.

And in that manner, I will just keep going. Never giving up. Always hoping for the best.

July 22, 2018

The Physical Journey is Over. The Emotional One is Just Beginning.

Here I am literally the moment I pulled into our new home in small town Virginia after our journey from St. Paul, Minnesota. Thankfully, we arrived safe and sound after three days on the road. My husband did the bulk of the driving, but we split up in Richmond so he could buy a new car (easier than moving two cars).

Yes, I’m as tired as I look.

I was tired from the road trip, tired because my daughter and I went climbing in Richmond while my husband bought his car, and tired from the emotional toll of it all.

This post is a week late because I’ve spent the past week in the haze of unpacking and setting up house. We have a way to go, but the house is taking shape.

The bulk of the physical tasks are behind us. We got here. Most of the boxes are unpacked. The fridge and pantry are stocked, and things are nicely organized on and in newly cleaned shelves and drawers.

If only the emotional unpacking were so easy. And so tidy.

If you’ve been reading, you know I was a jumble of emotions prior to leaving my hometown. I was hopeful that once I arrived in Virginia, I would leave the feelings of loss behind and be able to look forward with excitement to my new life here.

It’s only been a week and a day, but I’ve been spending dramatically more time looking backwards than forward. Yes, I know I need to give myself time, but the trend line is not moving in the right direction.

When you suffer from anxiety as I do, there is indescribable comfort in the familiar. In Minnesota, I basked in a cocoon of familiarity, as I’ve lived there my entire life. That cocoon helped me as I fought through the debilitating effects of lyme disease and anxiety. The cocoon held and comforted me as I worked so hard to get back to something resembling the physical and emotional health I once knew.

Here in Virginia, save for my husband and daughter, nothing feels familiar. Everywhere I go, I am reminded that everything is different. Every single thing.

For some people, that would be a bonus. For someone who thrives on familiarity, it’s heartbreaking. Instead of seeing new opportunities, I see only loss. Instead of embracing the new, I’m mourning the old.

Please don’t mistake this as having a bad attitude, which I don’t. I’m trying to keep an open mind, It’s just that I’m very sad and a little shellshocked.

My husband is from here, and we’ve been together for 15 years, so I have spent considerable time here. In fact, I absolutely loved it here — when I was visiting. When I was visiting I could see the charm of it all. The beauty of the water, the uniqueness of the water culture, the quaintness of the small town, the creativity in the shops and architecture.

I could see all that because this wasn’t home. It was just a magical place I was visiting.

But now that it’s home, the magic is gone for me. Quaint feels suffocating. Being an hour and a half from a major metro does not feel charming. It feels inconvenient. Being away from my friends and family and my entire history is overwhelming. In fact, I haven’t even been keeping in touch with anybody via text or email or phone, because somehow, being in contact only makes me feel the distance more acutely.

Again, I realize I need to give this time. It only took three days to cover the thousand miles between Minnesota and here. It’s going to take much longer to travel the emotional distance.

I don’t think I would be having this much trouble if I hadn’t gotten sick. The darkest days of my physical and emotional illness rattled me to my core, and there’s a part of me that will forever be vulnerable because of that. It’s as though a certain rewiring has occurred, and it’s harder for me to feel safe in the world. Harder for me to tolerate change. Harder for me to be in unfamiliar territory.

All day, every day, I am confronted with the unfamiliar. And it doesn’t feel good.

Of course, everything that becomes familiar started out as unfamiliar at one time. I understand that. But this was not the best time in my life to be rocketed out of so much familiarity.

There were many times during my darkest days when I had no reason whatsoever for optimism. My body was wracked with lyme disease, and all attempts to treat it only made me more sick. My doctor was scratching his head, as my response to treatment was so atypical, and he was running out of ideas. My mind was wracked with anxiety that also seemed treatment resistant, and my therapist was scratching her head and running out of ideas.

In short, I was working unbelievably hard to regain my health. And I was getting nowhere. And there didn’t seem to be any reason to believe things would change.

At that point, aside from my husband, there was only one thing I could cling to, and that was my faith. I literally had no other options. I just had to surrender myself to God and trust there was some way out that only He could see. And it turns out there was. There was no major turning point. Just a continual series of minor improvements that ultimately led to me feeling better both physically and mentally. I am not fully restored, but I am far removed from those dark, miserable, hopeless days.

Now I find myself at a similar crossroads. I’m just not comfortable here in Virginia. It’s not rubbing me the right way. I want to go home.

But I need to remind myself that the same God who led me out of the desperate darkness led me to this place. I have to believe He knows what He’s doing. Honestly, I feel like I would be better off if I had never left home, but if these years have taught me anything it’s that God’s plans are better than mine.

So in this time of sadness and feeling lost, I am trying every day to place myself in God’s hands. I ask him to help me keep my mind open to what He is trying to teach me, to what He is trying to reveal to me.

For now, my job is to stay the course. To stay as positive as I can, and to keep my eyes and ears and heart open to whatever it is I am supposed to be learning.

Time will tell.

July 7, 2018July 7, 2018

When The Baggies Come Out, It Means We are Heading Out.

I’m not going to lie. I long for the days when packing for a trip simply meant putting clothes in a suitcase. Now, clothes are the least of what I pack, or even give my attention to.

Since I am on a primarily liquid diet, my special, pre-digested protein powder is the first, and most important thing I pack. I have it down to a pretty good system. And while the liquid diet has made traveling exponentially easier, it’s a bit of a process to manage it. I thought I’d give you a glimpse of what a few days on the road with my liquid diet look like.

For starters, here are the basics:

I mix each shake with a cup of water and 1 tablespoon of MCT Oil. The oil adds 120 calories, and is easy to digest.
The shake separates if I mix it in advance, so I mix each shake when I’m ready to drink it.
When on the road, I use insulated cups to keep my shake as cold as possible, as it tastes better that way.
When going through an airport, I cannot add the water until we get through security, but I can add the oil ahead of time. So, I add the oil to each cup before we leave the house so I’m not messing around with oil and measuring spoons at the airport.
When we get on the other side of security I buy a bottle of the coldest water I can find and pre-fill my cups.
I use a small backpack as my purse, and my secret is it carries my shakes, along with my lipstick, wallet, etc. This is important to me because I used to carry a cooler around, and it felt so unnatural. Now I just feel like a normal person with a backpack.

OK, those are the basics, and here is what it looks like.

Step 1 is above. Pre-pack protein powder for each day.

Step 2. Buy water at the airport and mix shake.

This flight was at lunch time, so I’m making “lunch” here. I am measuring the water into a mason jar with line markers, as my thermal cups do not have measurements on them. My shake only tastes good if the powder to water ratio is correct.

A few other things to note. You will see my backpack to my right. You would never know it’s basically a life support system, right? You can also see the baggie of protein powder I packed at home, along with a cup of hot water I picked up at the airport. Whenever possible, I drink warm water along with my shake, as the warm water helps my GI tract relax.

Step 3. Sip. Slowly.

Here I am enjoying my lunch at the gate while we are waiting to board. Because the shake is so calorically dense (500 calories per), and I have very slow digestion, I have to sip it quite slowly. It usually takes me about an hour to get a full shake down, and a half hour to drink a half shake. I do full shakes for breakfast and lunch, a half shake for an afternoon snack, real food for dinner, and a half shake for “dessert”. This routine has helped me gain 26 pounds over two years.

Step 4. Get to hotel, wash shake cups and prep for the next day.

If we are going on vacation, we always stay in a house with a full kitchen to make it easier to manage my food and shake needs. When we are in more of a road trip situation, as we were here, my accommodation of choice is Residence Inn by Marriott. Each suite has a full kitchen, so it’s very easy to deal with my shakes. I absolutely hate washing my shake cups in a hotel bathroom sink and avoid it at all costs. Gross.

Here my cups are all nice and clean and ready for the next day. I will usually chill them in the freezer overnight, so they will stay cold longer the next day.

And that’s the end of this day. Now let’s take a look at the next day, which was a long one. We were at my daughter’s college for freshman orientation. We had to leave the hotel first thing in the morning, and would not return until after dinner. That amounts to a lot of preparation on my part. So, here we go with day two.

Step 1. Prep.

I measure the water and oil into each cup, grab the baggies for each meal (I label them in advance), and load everything up into my trusty backpack.

In this case, I mixed my breakfast shake at the hotel and sipped it on the way to campus. Pictured in the photo are my lunch, afternoon snack and “dessert”.

My morning supplements are in the bottom right of the photo.

Step 2. Hit Campus.

Here I am on campus, ready for a full day of sipping and learning. I am finishing up my breakfast shake, and the rest of what I will need for the day is in my backpack. Nobody is the wiser.

Step 3. Lunch.

Lunch was served in one of the school dining halls. My husband enjoyed chili and sushi, and I had….. a shake.

Step 4. Meditate.

OK, this one has nothing to do with my liquid diet, but keep in mind I am not fully restored to my old self. As such, I still get overwhelmed pretty easily when I am in a situation with a lot of people and a lot of stimulation. And the orientation featured an abundance of both.

We had a short break after lunch, so I high tailed it over to the prayer chapel, as I guessed it would be empty, and thankfully, it was.

First, I sat on a chair and closed my eyes and breathed. That wasn’t enough. I was still feeling quite anxious. So, I dropped to the floor, which usually helps ground me. That was an improvement, but still wasn’t getting the job done. Then I took my shoes off, grounding myself further. Then I was finally able to breathe easier and shed a few tears, which is usually a sign I’ve finally relaxed enough to release whatever emotions I need to.

After about a fifteen minute meditation, I was feeling improved enough to get back in the game. I wasn’t completely calm, but I felt better then before I meditated.

Yes, I know it’s a little weird to take time out from a college orientation for a cry/meditation break, but when you live with anxiety, sometimes you just need to do what you need to do.

Step 5. Afternoon Snack.

I was ready for a snack as one of the afternoon sessions approached, so I quick mixed it up before the session started. In this case, my husband did the shaking for me. Incidentally, it takes quite a bit of shaking to make my shake nice and smooth, so I need to factor that in if I’m in a public place, as I try not to call too much attention to myself.

Step 6. Dinner.

As with lunch, dinner was served in one of the school dining halls. I was wondering how it would work for me, as I have many food sensitivities. But the dining hall staff literally bent over backwards in order to prepare a special meal for me, and I was extremely grateful.

I forgot to take a photo until I was mid-meal, but here’s what it looked like. A little more oily than I would prefer, but beggars can’t be choosers. I didn’t eat much anyway.

Step 7. “Dessert.”

They had us on a tight schedule, so I had to mix my “dessert” up and bring it with me to the first post-dinner session. Typically, my shake has more calories than what I consume for dinner, as I’m only able to eat small portions, so my dessert shake is actually more important than whatever food I eat.

Here’s my shake on the chair next to me during the session.

Step 8. Get everything washed up and prepare to do it all again the next day.

Step 9. Collapse.

Yes, that was exhausting. First, it was information overload. Incredibly useful, but a lot to process. Then dealing with my shakes in the midst of it all was honestly, a bit stressful, and quite the hassle.

But right now, this is the only way for me. My GI tract cannot process enough actual food in order to maintain anything even close to a healthy weight, so what choice do I have, really? I can sip and continue to gain weight, and feel half way decent, or I can eat, and lose weight, and feel crappy.

I mean, when you look at it that way, it’s not even a discussion, right?

So I will continue to sip while also trying to heal my fractured gut, and never give up hope for a different future.