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.

Well, That Was a Bust.

I look like I’m just taking a cat nap, right? Actually, I’m in a drug-induced haze. In fact, at this moment, I felt so drugged my lips were tingling.

Let me back up. Per my previous post, I am currently enduring my second round of the vertigo rodeo. Typically, vertigo is treated with a medication called Meclizine. I, however, am incredibly sensitive to medication, particularly those that can cause drowsiness, as Meclizine can, so I held off on taking it.

But I’m on day 12 of being more or less house bound, and I really needed to get out to take care of a few things yesterday. So, somewhat against my better judgement, I decided to take half a Meclizine pill that my doctor had prescribed to me in what he called a “grandma dose”. No offense to the grandmas out there.

At any rate, half a grandma dose proved fully too much for me. I got so tired, I was in a middle-of-the-night sleep in the middle of the day. My husband took this photo when I woke up, and I was completely dazed and confused. And this was a full TWELVE HOURS after I took half the grandma dose. And this was my second nap of the day. I managed to stay awake until I crashed for good at 8:30 PM, fifteen hours after first taking the medication.

So, obviously, drugs are not the answer for me, and I’m just going to have to gut this vertigo out. Tomorrow, I’m going in for a procedure called the Epley Maneuver, where a physical therapist moves your head in a precise pattern that’s supposed to re-align your inner ear crystals that apparently go akimbo when you have vertigo. It helped me the last time, so fingers crossed it will work again. (If you’re wondering, I didn’t go for the Epley sooner because tomorrow is the first appointment I could get. We live in a small town and apparently the physical therapy place is a hot ticket).

Even if the Epley Maneuver helps, it won’t be instantly. My experience is that vertigo recedes slowly. It’s not like flipping a switch.

In the meantime, I’m doing my best to remain mindful and in the moment. I continue to remind myself this is far from the worst thing that could be happening to me. I remind myself there are many people dealing with much bigger problems, and I have compassion for them.

I’m doing my best to let go of my plans for how I was going to be kicking off my year, as I definitely had bigger things in mind than sitting around.

But here’s the simple fact of the matter. Whether I like it or not this is what’s happening now. And the more I can embrace it and let go of what I think could or should be happening now, the better off I’ll be.

Easy to say. Much harder to do. But I’m giving it my best shot.

2019 Got Off To A Fantastic Start……Until It Didn’t.

My daughter and I at sea on New Year’s Eve.

I started out 2018 with a horrible case of influenza. I was so sick I was hardly even aware it was New Year’s Eve. Needless to say, I did not celebrate in any way.

This year we were on a family cruse on New Year’s Eve, and we had the most wonderful evening. Just before midnight, the captain stopped the ship across from a Mexican island that is known for its New Year’s Eve fireworks display. We crowded the deck rail, the music was thumping from the pool party behind us, the countdown began, and at the stroke of midnight, the fireworks started, the ship’s deep horn blared for a good thirty seconds, and we popped champagne. It was a fantastic moment.

As I stood on the ship’s deck, I took a minute to be grateful for how much better this year was than last. What a difference a year makes.

Then this happened.

Motion sick in Mexico.

I should back up for a moment.

I am very prone to motion sickness, and have vomited over the side of many boats (my husband is a big boater, so water is an inevitable part of my life). I am also extremely sensitive to medication, so I cannot tolerate any of of the sea sickness medications. I have tried all the natural stuff — the wrist bands, ginger tea, acupuncture, acupressure, essential oils etc. I even tried this thing called a Relief Band, and it actually made me seasick when I tested it on land!

Given the above, a cruise might seem an odd choice, but we’ve been on two before and I did not get seasick either time, as those ships are large and relatively stable. But for whatever reason, the third time was not the charm. Quite the opposite, actually.

I had intermittent seasickness throughout the cruise. But the situation was exacerbated when we made a stop in Cozumel. We wanted to escape the tourist trap of the port, so we took a ferry across to Playa Del Carmen. I have taken this ferry ride twice without incident. But once again, the third time was not the charm.

By the time we got to Playa I was so nauseated I had to lay down on a bench for a while. I recovered enough to walk about around and hit our favorite spots in Playa, but the ferry ride back to the port was in the back of my mind the whole time. I told myself the seas would be more calm by the time we went back.

Wrong. They were worse.

The boat was seriously rocking, water was rushing in and people were screaming. I did my best to just focus on the horizon and but pressure on the acupuncture point for nausea, but to no avail. I was a wreck by the time we got back to the ship, and thank goodness there were still several hours in port before we sailed again, and the stillness gave me time to recover and enjoy the rest of the evening.

After the ferry ride from Hell. I am smiling but I feel like sh*t.

The story gets better before it gets worse again. On the better front, I only had mild motion sickness issues for the rest of the trip, and we really and truly had a fantastic time. One of the best vacations ever, even with the motion sickness.

On the worse front, things went dramatically downhill once we got off the ship. That’s right. When we got off. I’ve had that experience before. When my husband and I are on our boat for an extended period, I get “land sick” when we get off. It’s usually no big deal. I just feel like I’m rocking for a few days, and then it’s over.

This was entirely different. I became increasingly nauseated with every passing moment of being off the ship. By the time we got to our gate at the airport, I basically couldn’t move. I just slumped in a chair with my eyes closed until it was time to board. The flights home were basically a nightmare. I either slept or just stared straight ahead. No looking out the window. No reading. Way too nauseated for that.

I figured it was just a more severe case of my usual “land sickness” and expected it to pass in a few days. I was wrong about that. I spent the first few days home more or less unable to move, read, or look at my phone or computer. Anything that engaged my eyes made me feel even more nauseated.

This is pretty much how I passed the time.

The heating pad beneath my feet does nothing to help the nausea. It just feels good.

Each day, I kept thinking this is the day I’ll feel better. When the nausea didn’t pass in a week, I finally went to the doctor and he confirmed what I was afraid of — Vertigo.

I had Vertigo once before. You can read about it here.

Vertigo is unpleasant. I am nauseated from the time I get out of bed in the morning until the time I return in the evening. The severity of the nausea comes and goes. Sometimes I can semi-function. Sometimes I have to sit with my eyes closed. Today is a half way decent day, as I’m able to look at my computer, and type. I can’t always do that.

This is definitely not how I planned to start my new year. Pre-vertigo, I was focused on a year of health and healing, and this was not on the agenda. But it’s a wonderful reminder that much of what happens in life is not on our agenda. Sometimes the off-agenda things are unexpected happy events, and sometimes they are struggles.

But I can almost always find the upside in a struggle, and I’ll find it in this one too. For starters, I’m reminded how blessed I am to have the kind of life where I’m able to drop off the radar for a week or a month or however long this takes (there is no telling with Vertigo). Also, this little tangle with Vertigo helps me keep the rest of my struggles in perspective. I’ve learned to “power through” just about anything — stomach aches, fatigue, brain fog, even anxiety. But Vertigo cannot be powered through, as any type of motion makes it worse. So, I have renewed gratitude that most of my health issues are power through-able when necessary. And I’m grateful for the reminder that things could always be worse.

I used to be a runner before I was sick. When I was setting out for a long run, I’d get into a certain mindset. I’d tell myself to just settle in and not think about when it will be over because it’s not going to be over for a long time.

It’s that way with Vertigo. I’m not thinking about when it will be over. There is literally no telling. Instead, I’m settling in as if preparing for a long run. I’m letting go of to do lists and expectations for how I had planned to kick off my new year. Instead, I’m going to listen to my body and fall back on a strategy that has been immeasurably helpful to me over the years. Each morning, I’m going to ask myself a simple question. What’s possible for me today? Some days the answer will be a lot. Some days the answer will be a little. Some days the answer will be not much.

And I’m going to try to be ok with the answer. Whatever it is.

Happy New Year.



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.

This Is Major.

When I first became sick in 2009 , I weighed around 115 pounds. Some days a little more, others a little less.  If you are wondering, I am 5’6″.

With every passing day of my illness, I weighed less and less. I was doing everything in my power to gain weight, yet all I did was lose it. This slow yet steady march of weight off my body caused immeasurable emotional distress. At a certain point, I began to fear my intestines were simply no longer capable of absorbing nutrition.

My hair started falling out. I was fatigued all the time. My menstrual cycle stopped for years. I stopped weighing myself. I just couldn’t look any more. 

If you need a reminder, I have a motility disorder that either is or isn’t related to lyme disease, depending on who you talk to. When you have a motility disorder, food moves through your GI tract at a painstakingly slow pace, which means you feel uncomfortably full nearly all the time.  And you get full from eating very little.  Also, you have a lot of stomach pain, nausea and general discomfort. Sounds like a blast, doesn’t it?

It is against this backdrop that I was trying to gain weight. You don’t need to be a rocket scientist to see why I was not successful.

My husband recently told me that back in those days he would put his hand on my hip during the night and just cry. I was nothing but bones, and they seemed to be protruding more with every passing day.

We were scared. Very scared. We considered a feeding tube and  Picc line, but both felt like such drastic measures.

Out of desperation, we tried one last consult with a new nutritionist about two and a half years ago. She suggested a liquid diet comprised of elemental protein shakes. Elemental protein powder is broken down as far as food can be broken down, so the GI tract does not have to do much to digest it. Rather, the shake is simply absorbed. Hence, the name Absorb Plus.

I wasn’t too excited about the prospect of a liquid diet, but I wasn’t too excited about being a bag of bones either, so I didn’t see I had much choice.  My nutritionist asked me to weigh myself so we could get a a baseline before starting the shakes. I told her I couldn’t do that, so she asked me to do it with my eyes closed and have my husband report back to her. 

To this day, I don’t know how my husband kept a straight face as we dealt with the scale. 

I weighed 81 pounds. Remember, I am 5’6″.

I started the shakes, and hoped for the best, completely unaware of how little I weighed. I knew I was scary skinny, but I never would have guessed just how scary.

I crossed my fingers as I tried the shake, as I had already tried several other protein powders that I was not able to tolerate. At first, my GI symptoms remained the same, but after about two weeks, my symptoms slowly started to decrease, and I did not feel painfully full all the time. I had less stomach pain and nausea and I generally felt better.

Each week, my husband weighed me while I didn’t look, and he reported the results to my nutritionist. I was gaining weight for the first time in years, although, I still didn’t know how much because I didn’t feel safe looking at the scale. One look in the mirror after the shower told me everything I needed to know.

At that time, I told myself if I could just get back to 110 I would feel pretty good about life. Yes, it’s less than before I got sick, but it seemed like a pretty solid number, given where I’d been.

Well, I hit 110 a couple of weeks ago! Just typing that brings tears. It’s taken me two and a half years.  I could never describe how hard it’s been. The foods I’ve given up. The times I’ve watched others eat while I sipped. The hassle of brining my shakes everywhere. The daily commitment to stick to the program no matter what.

But I can honestly say it was worth it. Because along with the weight, I gained confidence, and a stronger sense of the person I used to be. I don’t feel so physically fragile. I don’t feel like I need to spend every waking moment strategizing how to gain weight. I don’t feel like I need to freak out if I don’t get all my calories in on a given day. I’ve been able to resume working out and I even put on muscle.

This all amounts to a burden lifted.  A burden I’ve been carrying for 9 years. Man, was it heavy. You have no idea.

As happy as I am to weigh 110, I’m not giving up, because I’m not at the end of the story yet. I gained weight by being on a liquid diet. And I see the liquid diet as a band aid, not a cure. If I went back to real food tomorrow, I have no doubt my 24/7 GI issues would return, and my new weight would go back to where it came from. Nothing has really healed. I just found a way to work around my problems.

So, I’m carrying on. I’m continually looking for new doctors, new options, new anything that will help me. I have a few things in the hopper, but nothing nailed down yet. I will report on that when I get it figured out.

In the meantime, I’m going to enjoy 110, which is my new favorite number.

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……..