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.

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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.

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

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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:

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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.

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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.

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

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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.

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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.

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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.

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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.

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

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

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

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What a day.

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:

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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.

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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?

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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.

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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.

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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.

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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.

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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……..

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.

Time For a Change in Scenery.

It has only been two and a half weeks since we relocated to Virginia, but we are heading out on vacation.

That might seem a little crazy, as we are not fully settled yet, but we are leaving for two reasons. First, with all the relocation logistics this has been the summer of madness for us, and we need a break. Second, our daughter is headed off to college in two weeks, and we wanted to be sure to hit the pause button on the moving stuff so we could be sure to spend some quality time together.

I know the family dynamic will never be quite the same once our daughter starts college, so I want to savor every last moment of my “baby” being under our roof full time.

It also turns out this is a very good time for me to be getting away. If you read my previous post you know the adjustment from a city to a very small town is turning out to be exponentially more difficult than I imagined. Honestly, I’m so happy to be leaving.

We are headed to a beach with a Whole Foods nearby, so I will have everything I need. We will be staying in a home with a full kitchen so it will be very easy for me to make my shakes and cook dinner.

I’m more relaxed just thinking about being in a bigger city. It’s easier to breathe.

I’m not exaggerating when I say most of 2018 has been extra chaotic and stressful for me personally and my family as a whole. We are all in need of a time out, and I plan to make this an extremely chill vacation.

I still have two big hurdles looming — dropping my one and only off at college, and figuring out how to be happy in a place that’s not feeling very good to me right now.

But I’m putting all that on hold for the next week. For this week I’m going to try to let go of some of the internal tension that has been collecting this year. I’m going to try to stay in the moment. I’m going to savor my dawn walks and I plan to inhale the sea air. Deeply.

And with luck, as I relax by the sea I will be able to send my stress, worries and anxieties out with the tide.

Oh, how I need that.

#chroniclyme #lyme #anxiety #lymedisease

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

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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:

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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.

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

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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.

 

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

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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.