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Mold Could Be My Smoking Gun.

I feel sick just looking at this photo.

At any rate, I was diagnosed with Chronic Lyme Disease in 2013 by one of the top Lyme specialists in my state. He treated me with the same protocols he has used successfully for decades. However, I didn’t get better. In fact, I got much worse. My doctor was perplexed by my lack of improvement, and eventually ran out of ideas for how to help me.

Fast forward to 2019. We moved to a new state and I started with a new doctor who had a new idea about why I wasn’t getting better.

My blood marker called C4a was elevated, which is not uncommon for Lyme patients. BUT, an elevated C4a can also be a marker for toxic mold illness, also knows is Chronic Inflammatory Response Syndrome, or CIRS. In that light, my new doctor ran a full mold workup, and I tested positive on every single test.

Among other things, it turns out I have a genetic mutation that prevents my immune system from recognizing any biotoxin, including mold and lyme. Also, part of the mold work up includes a nasal swab for an infection called MARCoNS that lives in the nasal passages and is associated with mold illness. I have that too, in high levels.

This is massively significant.

As I replay the tape of my life, I can see I have lived in several houses that have had water damage and therefore mold. And since my immune system does a very poor job of eliminating mold, I’m basically carrying a lifetime of mold in my body.

Not good.

I asked my doctor if my mold diagnosis was a headline or a bullet point, and he said it is most definitely a headline. In fact, he believes my untreated mold is the reason I haven’t been able to regain my health.

As it turns out, many of my symptoms are commonly associated with both Chronic Lyme Disease and CIRS. And in cases where a patient tests positive for Chronic Lyme (which I did), doctors often don’t look further for other causes of illness (which happened to me).

It turns out we likely did enough to treat the lyme, and my remaining symptoms are due to the mold. Which means that treating the mold could change everything.

That’s the good news.

The bad news is my mold status has rendered me exquisitely sensitive to medication, which is very common. And mold doesn’t leave your body by itself. It needs to be shown the door through the use of of medication that binds it and pulls it out. That’s where the sensitivity to medication comes in. I become massively sick from micro doses of binding medication.

This is a problem that will greatly hinder my ability to recover. My doctor says it usually takes one to three years to recover from mold illness, and it’s more likely I’m on the three year plan.

Speaking of the plan, it goes like this.

Step 1: Remediate your environment. We’ve done that. Although, we recently moved and just discovered mold in the house in spite of having numerous inspections prior to moving. So, we are re-remediating. Ugh.

Step 2: Use binders to pull mold out of the body.

Step 3: Clear MARCoNS using a prescription spray.

I’ve been working on my mold program since summer of 2019, and frankly, I’m not doing well with any of the steps. My mold markers in my blood became elevated after we moved, which means I’ve had another exposure.

I was not able to tolerate the most effective binders. The binder I do tolerate is called Okra Pepsin, and it is less efficient that other binders, and I’m taking a pretty small dose, so I can’t imagine I’m making much progress.

I can’t even attempt Step 3 yet. I tried the nose spray, and became very sick after only two days at a fourth of the recommended dose. So, I need to get further along on Step 2 before I can try Step 3 again.

In short, my latest mold exposure along with my inability to tolerate the binding medication is putting me on a long and winding road. That is most certainly discouraging.

But, if my doctor is correct, I have a tremendous opportunity to improve my health if I keep on trying. Think about it. I have been collecting mold for years and have not been doing a single thing to get rid of it. That’s really good, right? At least that’s the way I see it. In my world, discovering an untreated condition provides an opportunity for healing that didn’t previously exist.

I’m going to hang on to that thought, even if my progress is slow and not immediately evident.

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It’s Been A Minute.

Ok, more like a year.

It’s interesting that my last post nearly a year ago is about how my brain fog makes it difficult to function. That pretty much sums up why I haven’t written anything in a year.

It’s been a time, and I couldn’t possibly tell you about all of it. Let’s just say 2019 was not my best year, and 2020 got off to a rough start. The headline is two significant things hapened:

First, we went on a cruise in January 2019, and it left me with a ridiculous condition called Mal DeBarkment Syndrome (MDDS). It’s as heinous as it sounds. Mal DeBarkment Syndrome basically means your brain doesn’t adapt to being on land after adapting to being at sea. The result is you feel seasick on land. 24/7. It’s incurable and can be extremely debilitating.

For the first two months I had MDDS, I was so nauseated I literally could not move from a chair, and only got up to use the bathroom or get food or go to bed in the evening. Yes, you read that correctly. Two months in a chair.

We found a treatment program at Mt. Sinai hospital in New York City, and I had a week of treatment there in late February 2019. The treatment helped but did not cure my MDDS and I had to return for treatment again in the summer.

In the course of being diagnosed with MDDS, it was discovered I have permanent nerve damage in my left ear, which likely made me more susceptible to MDDS. These are actually two different problems. Each with their own treatment plans. The MDDS causes nausea and makes me feel unbalanced as if I was on a boat. The nerve damage causes nausea of varying degrees of severity.

As of now, the MDDS is under control, and I am currently undergoing Vestibular Therapy (PT for the brain) for the nerve damage. The vestibular therapy helps, but it’s not a cure. I have periods where I feel just fine, and periods where I am debilitated by nausea. Generally, I’m able to string together three to four weeks of feeling well before suffering a bout of nausea that can last hours, days or weeks. I have been living with this uncertainty since January of 2019, and it’s likely to continue indefinitely. I’m learning to make hay when the sun shines, and rest when it doesn’t.

These vestibular issues have nothing to do with my regularly scheduled problems. And in some ways, they make me appreciate my regular problems, as they generally easier to power through than intense nausea and instability.

Speaking of my regularly scheduled problems, I have news on that front. In summer of 2019 I was diagnosed with toxic mold illness, also called Chronic Inflammatory Response Syndrome. THIS IS BIG NEWS. My doctor believes I have been suffering from untreated mold for years and believes it’s the reason I have not been able to regain my health in spite of so much effort. I hope he’s right.

I started treatment for mold last summer, and have had great difficulty tolerating the medication, so it’s going to be slow going. It’s extremely common for patients with mold illness to be exquisitely sensitive to medication, so I am not alone on that front.

My mold story is long and complicated and I will get to that in more detail in future posts.

For now, I just wanted to try and get back on the horse. Between the nausea and the mold treatment making me very sick I just haven’t had the will or ability to write much of anything.

But here we go. I’ve taken the first step, and I’m hoping I will have the energy and motivation to continue.

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This is What My Brain Feels Like.

Lyme disease has not made me stupid. In fact, I am pretty sure I am just as intelligent as I was before I got sick.

However, lyme disease has made it incredibly difficult to access my intelligence.

Here’s the analogy. I know next to nothing about horse racing, but I did read Seabiscuit. In Seabiscuit, Laura Hillenbrand beautifully details a critical moment that occurs in every horse race. It’s the moment when the jockey determines it’s time to make a move. Hllenbrand describes it as asking the question of the horse. Are you ready to run?

When I want to do something that involves intellectual engagement, I’m basically asking the question to my brain. I’m asking if it’s ready, willing and able to work with me. And guess what? More often than not, the answer is not so much.

This is one of the many manifestations of the lyme related chronic fatigue I experience. I am so very tired. And when I try to engage my brain in something like writing this blog post, I have to fight through layers of brain inertia. When I reach for a thought, what I land on feels like a cloud of dead gray matter. Nothing happening. Nothing going on. The question falling on unwilling ears.

I have no idea what my IQ is, but I know I’m not a genius. I’m probably of average intelligence. But I’ve always felt I was blessed with a quick mind, and that’s my competitive advantage. I can very easily read a room or situation, connect dots, see a problem and formulate many possible solutions. When I was in advertising, I never thought I was the smartest person in the room, but I often believed I was the quickest, and that served me very well.

But now my brain doesn’t feel so quick. It’s like a car stuck in neutral. When I’m ready to drive, my brain isn’t. And on those occasions when I do get my brain into drive, I am often left mentally exhausted by the effort of engaging in whatever I engaged in.

Is this frustrating? Yes. Double yes. Makes me crazy. Is there much I can do about it? Not really sure. I’m doing everything I can to defeat my lyme and fatigue issues, but so far I’m not winning that battle.

In the absence of a cure, patience and self-kindness are the only remedies that feel plausible at this point, and I exercise those with abundance. I use my brain when I can, I rest it when I need to, and try not not get too whipped up about whatever is or isn’t happening brain-wise.

Do I like having to operate this way? Absolutely not. It’s very inefficient, unpredictable and non-productive. But I can howl at the wind all I want, and it’s not going to do a damn thing to help me concentrate on a day when my brain is encased in fog.

So I don’t howl. I don’t whine. I just treat myself with kindness, and wait for a better day.

It always comes.

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A New Beginning. Again.

I’ve been very lame about dealing with my lyme disease for the past year and a half or so. Our life got busy, and there always seemed to be something more pressing than lyme disease. Probably not the best idea. Really, what’s more pressing than trying to restore your health?

Time to re-prioritize and put some focus back on my healing. The problem was where to begin. For starters, we relocated across the country last summer, so I had to find a new doctor here. But that’s just a logistical issue. The root of the problem is I don’t know who to trust anymore. I’ve seen my share of doctors from across the spectrum — mainstream western medicine doctors to functional medicine doctors to homeopaths to chiropractors to acupuncturists to “witch doctors.” And they have each given me reasons to both respect and revile them.

And let’s be real here. None of them has cured me. Yet. And I’ve been at this for nearly 10 years.

While I didn’t know where to turn, I decided that doing something, even if misguided, is better than doing nothing. I took stock of the variety of doctors I’ve seen in the past, and to my surprise I decided to see if Western Medicine had anything to say for itself. It’s been a while since I’ve talked to Western Medicine doctors about my lyme and GI issues, and I wanted to see if anything had changed.

In a word. No. First, I met with a highly recommended western medicine doctor. Nice guy, but he’s not up to speed on the latest treatments for lyme, and he had absolutely no idea about what to do about my gut. He took a bunch of blood and didn’t have any recommendations. Strike one.

Next, I had a consult with a GI doctor. Again, nice guy. But he literally told me there is nothing that can be done about my GI problem, which was diagnosed by the Mayo Clinic as Idiopathic Intestinal Psuedo Obstruction.

Let’s pause on that for a moment. First, Idiopathic = No known cause. Pseudo = fake. So, basically, a $30,000 work up at the Mayo Clinic determined I have a fake intestinal obstruction of unknown origin. Does anybody think that’s a real diagnosis? I don’t. Neither does my husband. I think it’s a symptom, and my husband says it’s an apology for not being able to figure out what’s really wrong.

Incidentally, every lyme doctor I have consulted with believes my GI problems are related to my lyme infection. They also don’t think Idiopathic Intestinal Pseudo Obstruction is a real diagnosis.

Anyway, that turned out to be a big no thanks to standard western medicine doctors.

I researched more, and came across a gem of a doctor. He began practicing as a Western Medicine doctor, then suffered a number of health issues that Western Medicine had no answer for. That led him to Functional Medicine, which is the practice of finding root causes for health issues vs. the Western Medicine model of treating symptoms with pills.

My doctor found healing in the Functional Medicine approach, which inspired him to become trained and certified in Functional Medicine. So, he brings both Functional and Western Medicine perspectives and capabilities, which I believe is a powerful combination.

My first appointment was two hours. I told him my story, and he took 25 vials of blood.

The results were encouraging. Yes, he found a bunch of things wrong with me, but the things he found correlate to my symptoms, so A), I’m not crazy and B) there’s hope for improvement.

Among the more notable findings:

  • I am still testing positive for lyme disease 14 years after the tick bite, and 6 years after starting treatment. Yowza. FYI, I tested positive on the CDC- approved Western Blot. This is an important distinction, as there are many lyme tests out there, but the Western Blot is the only one recognized by insurance companies, the CDC, and Western Medicine in general.
  • I have a pattern of reactivated Epstein Barr Virus (EBV), the virus that causes mono, which I had in college. The deal is the virus lies dormant until the immune system lays down the welcome mat because it’s busy fighting another fire (i.e. lyme disease). This could help explain some of my fatigue issues. Yea.
  • I have raging cortisol (stress hormone) from the moment I wake up until the moment I go to bed, most likely because my body is working so hard to fight lyme.
  • The environment in my gut is basically toxic — the balance of bad to good bacteria is tipped so heavily toward bad that when I take probiotics they die. Literally. The bad guys just mow them down. As a result, I am not able to repopulate my gut with good bacteria, which means the bad guys are running the show. Which is not good.
  • I have markers for mold, which is not surprising because lyme makes it difficult for the body to process toxins.
  • I have other markers for lyme beyond the lyme test.

And those are just the highlights. I can’t get in to all of it or we’d be here all day.

This is such a good illustration of the way lyme acts as a wrecking ball to my body. I did not have any of the above problems before I had lyme disease. Not one.

That said, I find this information helpful and it gives me hope. My new doctor is discovering things other doctors haven’t — EBV and mold to name two — so that means new opportunities for healing. I know for a fact I still have lyme, so I’m motivated to start treatment again. I believe in my doctor, and he believes in me, and I have the deepest hope something will be different this time.

However, something is the same, and that’s the giant list of supplements my doctor is recommending (see the color coded sheet in the photo). This is very typical. Every time I start with a new doctor, they take 25 vials of blood, find 25 things wrong and recommend 25 supplements. Do the supplements work? Heck if I know. I’m not better, so that’s evidence to the contrary. However, I have not managed to lick lyme, which is the great disrupter, so it’s hard to know.

On that note, we are taking a two pronged approach: 1) Kill the lyme, 2) deal with what the lyme did to my body, and I am taking supplements on both fronts. Will this new round of treatment bring new results? Again, heck if I know. But one thing I know for sure. Doing nothing will achieve nothing. Doing something might accomplish something.

So, I’m taking the pills. Again. All of them.

I’m going to stay the course until the end of summer. I don’t expect to be cured by then, but I would hope to feel some improvement. If I don’t, my doctor and I will have a come to Jesus to discuss whether I am making progress or just swallowing pills.

That’s pretty much it. New beginning in progress. I have been at this too long to believe in miracle cures, but I am hopeful this new round of treatment will bring slow, incremental progress. I didn’t get into this overnight, and I’m not going to get out of it that way either.

Onward.

P. S. Now the disclaimer. Those supplements were prescribed to me by my doctor based on specific test results. If you think any of those supplements would be helpful for you, please, please, please discuss with your doctor, as I am not qualified to provide medical advice.

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Just One More Strange Thing……

It’s been a while. That’s because I’ve been mostly unable to look at my computer (or any screen) since early January. In case you’ve forgotten, I was struck with a bizarre illness called Mal de Debarkment Syndrome, or MDDS. And yes, the syndrome is as odd as the name.

Very long story short, MDDS occurs when somebody gets off a cruise ship and their brain does not adapt to the change from a moving platform (the ship) to a stationary one (the land). Said another way, your brain thinks you are on a ship while you are standing still. I can tell you the brain is not fond of this situation. As a result, I felt 24/7 severe motion sickness and nausea that began nearly the moment I stepped off a cruise ship in early January. I felt like I was rocking when I was standing still, I got nauseated from looking at any type of screen, and basically, I was confined to a chair for all of January and February.

MDDS is uncommon, so there is not much treatment available, however, my husband found a program at Mt. Sinai Hospital in New York City. We went up there for a week of treatment the last week of February, which was the first available appointment. It was a long wait, but I was just grateful help was available.

There’s no way to finesse this. The treatment was completely bizarre, and if my husband had not been with me, I probably would have walked out.

It went down in a lab that looks like Frankenstein’s workshop. Take a look.

The first photo is the equipment that monitors and controls what happens in the second photo, which is a light proof booth. The booth contains a chair that can be spun by remote control. The treatment consists of different patterns of light being projected in the booth while the chair spins. The photo at the top of the post shows what it looks like in action.

It was not fun.

Basically, the way they treated my motion sickness was to make me exponentially MORE motion sick. It’s completely counterintuitive, and my husband and I could not fathom how in the world this was going to help me. Our only comfort was we were at a world class hospital, and the treatment was validated by research.

The first day was not promising. I became so sick from the treatment we had to stop early.

The second day was about the same.

By the third day we figured out a rhythm. Instead of the standard two hour treatment, the doctor broke my treatment into two – one hour sessions, one in the morning and one in the afternoon. Also, he slowed the speed of the light patterns, which also helped me tolerate the treatment.

At the end of the third day, we finally dared to hope a little bit.

I left each treatment feeling extremely motion sick and exhausted. I typically had to wait a while before I could even leave the building, which I’m doing in the photo below. And yes, I feel as badly as I look. My thought bubble is “are you f’ing kidding me?”

I left the final treatment feeling worse than ever. We were assured that was normal, and were told it could be a couple of weeks before we would know if the treatment was effective.

So, I arrived home feeling exactly the same as before I went to New York. Not exactly what I was looking for. I spent the first weekend home just as I spent the first two months of the year — sitting in my chair. I tried to keep the faith and not worry, but it was difficult. For the first time I began to panic that I might not ever kick MDDS.

The way my husband describes this phase is that my brain was like a snow globe that had been shaken up, and we just needed to hang in there until all the little flakes began to settle. I held on to this image, but I have to confess I was not feeling particularly optimistic.

Blessedly, the flakes began to settle about four days after my last treatment. It’s now about a month since treatment, and I’d say my snowflakes are at least 90% settled. I still have spells of dizziness and nausea, but they are completely manageable. I still hope for a full recovery, but if I never get any better than I am in this moment, I can live with it. Amen.

Double amen.

I am so incredibly grateful to the doctors at Mt. Sinai who had the curiosity, smarts and motivation to develop a cure for this bizarre, yet debilitating syndrome. I literally do not know what my life would look like if I hadn’t been fortunate enough to benefit from the treatment.

Lyme disease has ravaged my body and mind, however, I can usually manage to function to some degree, even on my worst days. By contrast, MDDS was fully incapacitating. Severe nausea and the sense you are moving when standing still simply cannot be powered through. Any movement at all, even simply turning my head, make everything worse. It was hell. If you read about MDDS, the words “devastating” and “debilitating” come up quite often, and I can tell you they are true.

I thought I saw the devil in my lyme and anxiety struggles, and I suppose I have, but MDDS was an entirely different devil, and one I hope to never see again. On that note, relapse is a very real possibility, so I have to take measures to try and prevent it — I cannot go on any type of boat, it’s best if I drive when in a car, and I need to take medication when I fly. This all adds a little hassle to my life, but I will take hassle over debilitation any day.

Now, with MDDS mostly in the rear view mirror, I can return to my regularly scheduled health problems, which is a blessing, odd as that sounds.

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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.

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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.

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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.



Posted on

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.

Posted on

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.