Well, Hello There. It’s Been A While.

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A few months ago I decided to stop writing my blog because I’m in the process of re-entering the workforce. Let me back up.  I’ve been home for the last twelve years. At first it was a choice — I wanted to be home for my daughter.  But then staying home became a necessity when I got sidelined by chronic lyme disease.

Well, my daughter is now a freshman in college, and while my lyme issues are not completely resolved, they are much improved. With both time and better health on my side, I felt a strong desire to get back “out there.”

Even though I feel ready for this next step, I have to admit it’s terrifying. Let’s take an inventory.  I’m 50.  I’ve been out of the workforce for 12 years.  I still have very low physical, mental and emotional resilience. I’m on a liquid diet. A recruiter’s dream, right? Ha.

Anyway, I decided to push all that to the background and move forward. I figured I must still have something to offer the world. While lyme has taken much from me, I’m pretty sure it didn’t make me any less intelligent. 

My first step in re-entry was to figure out what to do. My career was in advertising and there’s no way I can go back to that. First, the business has changed so much in the digital age that I would be considered a useless dinosaur. Second, I could not handle the hours, demands, travel and stress. So, it’s a big “no” for advertising.

Then it occurred to me that while I may no longer be relevant in the advertising world, the skills I developed there still are.  In advertising, I learned how to write, how to solve business problems, how to develop strategies and how to manage people and projects. With this inventory in mind, I thought about other ways I could apply my skills, and I immediately thought of the non-profit world. And then I thought about grant writing. I had a hunch the skills I used as an advertising account director would transfer well to grant writing.

To prove or disprove my theory, I enrolled in an online grant writing certificate program. Guess what? The skills a grant writer needs are exactly the skills I honed in advertising. Bingo.  As an added bonus, I feel I am in the “giving back” phase of my life, so I am extremely interested in working in the non-profit sector.

So, I figured out what to do, and I just completed my certificate program. But before I started my program, I thought about my online profile. I am not on Facebook, and am barely on Instagram, and I may be on Twitter, but I never post anything. So, there’s not much there. But this blog is rich in detail of my physical and mental struggles, and I decided I didn’t want any potential employers to see it. So, I set my blog to “private” and stopped writing. Then I fired up my LinkedIn profile.

I felt pretty good about that decision. Until I didn’t. I’m fine with LinkedIn, but I’m not fine with my blog fading to black. First, I missed it. Writing helps me deal with my challenges and helps me find perspective. And my great hope is I’m helping somebody else as well.

More importantly, I decided to be so open on this blog because I want to do my part to help reduce the stigma associated with mental health struggles. Hiding my blog because I want to re-enter the workforce is pretty much the opposite of that.

So, I’m back.  Let’s see where this goes.

Do I Look Sick To You?

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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.

 

 

 

 

Shaking My Way Around D.C.

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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.

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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.

 

 

 

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