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.

IMG_1965

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.