Mold Is Insidious.

We are currently doing a quarantine within a quarantine. We had to leave our house for two weeks while it got remediated for mold (see previous post). When researching for a rental home, I was looking for two things: sanitization, and the best chance of not having mold.

For the latter, I looked for a house on the newer side that did not have any wall to wall carpeting or drapes (they hang on to mold). I also asked the rental agent about any history of mold and/or water damage.

The house I landed on seemed to fit the bill. It is all wood floors with only a few area rugs. Blinds instead of drapes, and it got high marks for being clean as a whistle. Also, the rental agent assured me there had never been a mold problem.

You can never know for sure if mold is present, as it often is not visible and does not give off any odor. When we entered the house, it seemed fine as far as we could tell. We brought several air purifiers just in case, though.

I was feeling very crummy when we arrived here, most likely due to the new exposure at our house, and I was hoping a new, hopefully mold-free environment would help improve the way I felt. Unfortunately, I felt the same, maybe even worse.

About three days in, I was laying on my back practicing yoga in the master bedroom. I happened to turn my head to the side and that’s when I saw the above water damage stain on the master bath ceiling. I have no idea how long that stain has been there, but it’s safe to assume it led to mold, as mold follows water. Generally, it forms within 24 to 48 hours of water damage.

So, this house likely has mold.

Ugh.

And remember, I have a genetic defect that makes my immune system unable to “see” mold. So, if there is mold around, I’m absorbing it and am not eliminating it.

Yeah, I’m frustrated. Any mold I absorb adds to my toxic burden, which will make it harder to get well.

Some people with mold illness get so frustrated with trying to keep their environment safe, they literally resort to pitching a tent in their yard. Some people walk out of their houses with nothing but their credit cards and never look back. I’ve been tempted to do both, or to move into an RV, but I’m not quite that desperate. Yet.

On the bright/hopeful side, our house will be remediated by the end of the week, and I should finally be in a mold free environment for the first time since I was diagnosed with mold illness last summer.

This will not be an overnight fix for my health. In fact, I still face a very long road, but I’ve come to understand recovery is impossible if I am not in a safe environment. So, here we go with step one.

Wish me luck.

This is a Problem.

Before I start on the topic at hand, can I just say it seems somewhat ridiculous to be writing this blog in the midst of the pandemic. I am literally overwhelmed by the daily devastation, and in that light, my health problems seem irrelevant.

But the fact of the matter is I’m sick, and if you’re reading this you probably are too, so we have to keep moving forward, pandemic or not.

About those photos. The first is the hallway that’s between my bedroom and office. And guess what was just discovered there? Yep, mold. In a large quantity. And the second photo is an air vent in my office. Mold was just discovered there too. So, the two places where I spend the most time. Nice, right?

We just moved to this house a few months ago, and we had it inspected for mold by three different people prior to moving in, and nothing was found. Then we started our mold best practices practically from day one — air purifiers in every room, changing the air filters every 30 days whether they look like they need it or not. And of course, I was on my routine of taking mold binders, going to the sauna, etc.

But a month after moving, my mold blood marker called C4a became elevated to nearly double to what it was prior to moving. If you’re a numbers person, anything above 2830 is elevated. Mine’s at 5400. It has been as high as 8300, but was down to 1900 prior to moving. I also have been feeling worse than usual lately, so something is definitely up.

To that end, we had two more mold inspectors crawl all over the house, and between the two of them, they found the smoking guns. The ones I already mentioned, and a basement ceiling, which happens to be below the room where I spend a lot of time during the day. How am I doing?

So, we need to remediate, which is no small process. Dealing with the air vents and ceilings is the easy part. Dealing with our contents is the difficult and overwhelming part. What do I mean? Well, if you have mold in your house, it means you have mold in your air, which means you have mold on literally everything you own. Think about that for a minute.

As I look back, I realize all of the houses we’ve lived in for the past 15-plus years have had mold. That means furniture we have moved from house to house has also carried mold. My husband and I have known this for a while but have never gotten serious about dealing with it because it’s so incredibly overwhelming. It’s paralyzing. Seriously, think about it. Every book, every article of clothing, ever piece of furniture, every file folder, our computers. Mold. Mold. Mold.

Our rationale in the past has been that we’ll just get the house mold-free and hope that’s enough. Well, I have been treated for CIRS (mold illness) for nearly a year, and I’m literally no better, so we have to get more serious about our remediation.

When I think about what’s involved I become so overwhelmed I literally want to get rid of everything and start over. But that’s not very practical. So, we are going to do the best we can. Or, I should say, my husband and the remediators are going to do the best they can. Remediation stirs up mold, so I’m not supposed to be around while it’s happening.

So this is the loose plan. My daughter and I are going to leave for a couple of weeks. Not what I want to do during a pandemic, but I’m picking my poison. While we are gone, the remediators will fix the moldy areas, and then literally wipe down every single surface of our house from top to bottom. Every wall, every window and pane, every piece of woodwork, every hard piece of furniture, every piece of art, every bathroom, the kitchen, and every inch of the floor. Can you even imagine?

Then another team will take all the contents out of our basement, wipe them down and place them in clean plastic bins (in case they miss any mold) and bring them back inside. This process needs to take place outside because mold is released into the air during cleaning, and we don’t want that to happen inside.

If remediation is not done properly, the air in the home can actually be worse (i.e. contain more mold) than before remediation. So, remediators have to be selected and vetted very carefully, and we are working on that process now.

Needless to say, I am beside myself. This is going to be time consuming and expensive and involve staying in a rental home during a deadly viral outbreak.

This is the part of the post where I usually try to say something positive to put it all in perspective. I could do that, but I’d be faking it. Sure, there are worse problems, and I understand that. But this pretty much blows, and sometimes I just need to say that.

And now that I’ve said that, I can be a little more positive. It could be so much worse. There’s always something worse. I have food, clothing, shelter, love and faith. Life’s basics that so many people lack. And we have the ability to ride out the pandemic at home. So, while the mold situation isn’t what I would hope for, I really can’t complain.

Expelling Mold From My Body: Three Bad Options. (At Least for Me).

As I mentioned in my previous post, I am full of mold, which is not good. Mold does not want to leave the body by itself, so it needs help in the form of medication that binds and removes it.

If you tolerate the medication, it’s a good process that leads to positive results. If you don’t tolerate the medication, it’s a heinous process that leads to less than positive results.

If you’ve been reading for a while, you will have already guessed I fall into the latter category.

Ugh.

So, here’s how it went for me.

The first photo is cholestyramine, which is actually a cholesterol lowering medication. However, it also binds toxins, and is regularly used for that purpose. The recommended dose for mold binding is about a tablespoon twice per day. The amount that makes me incredibly sick is in my hand above. Hard to believe, isn’t it?

Why does it make me sick?

That’s a good question. Either I’m reacting to the cholstyramine itself, or the medication is pulling toxins out of my body faster than my body can process them. Either way, it’s bad. When I’m sick from cholestyramine I experience the follwing: flu like symptoms (body aches, general malaise), fatigue, headache, severe fatigue behind my eyes, difficulty with word finding, slowed speech, a general lack of a will to live, and I feel like I’m being poisoned (I’ve never been poisoned and have no idea what it feels like, but that’s the thought that always comes to me when the medicine makes me sick). Sounds like a picnic, right?

I was actually willing to tolerate all of that if it would lead to feeling better, but I got done in by another side effect: diarrhea. Sorry, getting personal now. I’m talking get-up-and-run-to-the-bathroom-diarrhea. So, that was game over for cholestyramine. Not to mention, my doctor wasn’t sure I was even accomplishing much with the micro, micro dose I was taking.

Enter Welchol. Different drug, same purpose. Bind mold. Well, this had the exact opposite effect on my GI tract. Total shut down. I’m talking no trains running at all, which is a very bad side effect, because once the mold is bound, it’s supposed to leave in the stool. So, game over for Welchol too.

Enter Okra Pepsin from Standard Process (third photo). This a non-pharmaceutical mold binding agent. It does not give me any unwanted GI issues, however, if I take too much I get many of the same side effects as I did from cholestyramine, so I need to be very careful. I slowly worked up to three caps per day, but every now and then I get sick and need to back off.

The downside is Okra is not nearly as effective as Cholestyramine or Welchol, so it’s going to be a slow process. Very slow.

In fact, some days I wonder if I’m making any progress at all. But here are my options. Take something more effective that basically debilitates me, or take something less effective and still have the opportunity to function. I’ll take door B. It’s not ideal, but nothing about chronic illness is.

This is my life, at least for now. So, I will continue to take it one day at a time, one dose of Okra at a time, and I will continue to hope and pray for the best.

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.

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.

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.



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.