Do I Look Sick To You?

IMG_1617

I don’t think I look sick. And my guess is you don’t either. And if you saw me on the street, you may not even notice me. I might just sort of blend in with the “normal” people.

The truth is I live in that grey area between sick and well. I’m far removed from the days when I spent more time resting than upright, and when my lyme induced brain fog was so thick that I couldn’t read. (That lasted two years, BTW).

But I’m also far removed from the happy, vital, well digesting person I was before I got sick.

In that vein, let me dissect the above photo (taken while out and about in D. C.) to illustrate the ways in which chronic illness has affected me.

Let’s start with my shorts. For starters, they are not shorts. They are a bathing suit bottom. There is actually a bikini inside, which holds them up. They are a size too big so the waistband doesn’t touch me.

Now that I have you thoroughly confused, let me explain. Somewhere along the way, my entire body became hypersensitive to pressure, particularly in my abdominal area. As a result, I cannot tolerate any type of waistband. Or even a shirt or dress that’s tight through the middle.

In the summer I wear loose fitting dresses, or the afore-mentioned bathing suit/shorts. If I want a dress that’s more fitted, I buy it a size too big, and then have it taken in so it has a little shape but doesn’t touch me.

In the winter I wear leggings. I buy them several sizes too big, then take them to the tailor to have the elastic waistband removed and replaced with a drawstring so I can make them as loose as possible.

Let’s move up to my shirt. It’s slightly loose fitting around the middle. Again, nothing can touch me.

Now, my sunglasses. Note they are lightweight. Anything with a heavier frame than what I’m wearing hurts my head. Same for hats, which is why I’m in the screaming heat with an uncovered head.

On to my purse, which is more like a medical bag than a purse, as I am on a mostly liquid diet. It contains the following:

  • Two insulated cups, each filled with cold water and coconut oil (the oil adds much needed calories).
  • Two baggies containing the protein powder that will go into each cup at the appropriate time (the shake does not hold together if mixed ahead of time).
  • Digestive enzymes to help my body break down the shakes.
  • Oh, and a lipstick and some cash and credit cards.

The things you would normally find in a purse are the least of what I carry.

Why am I sharing this? I guess the moral of the story is you never know what somebody is facing. Looking at me would you ever guess I require a liquid diet to maintain life and can’t wear pants? I don’t think so.

I try not to use this blog to preach, but I’m going to just a little bit. Everybody is carrying something. Some people’s burdens are obvious. Other people’s are more invisible. And in a world that’s becoming increasingly uncivil, I think a little kindness goes a long way.

Be nice. You just never know.

 

 

 

 

Shaking My Way Around D.C.

IMG_1527

Doesn’t everyone plop down on a curb when it’s “lunch time”? Well, I do.

My daughter and I enjoyed a fantastic get away to DC last week. It was quite the whirlwind, and we ended up being out and about for ten to twelve hours per day. That’s not the way we usually roll. We both tend to do best with a moderate amount of activity each day, along with plenty of downtime.

But we were enjoying the city so much that we ended up staying out from morning to evening. D.C. is like New York in that way. You walk out your door with a loose agenda, but then the flow of the city takes over and you end up bumping into fun and interesting experiences. It was one of those serendipitous trips where each day took on a life and flow of its own, and we just went with it.

While that was all very fun, it also created a bit of hassle for me, as I was continuously drinking a shake on the go. You’ll recall I’m on a primarily liquid diet because lyme disease destroyed my digestive tract.

In the photo above I’m preparing my “lunch” just as we arrived at the Holocaust Museum. There wasn’t anywhere to make my shake, so I just sat on the curb. Glamorous.

A few hours later we were strolling through the city when it was time for my afternoon snack. Again, there wasn’t anywhere obvious to make my shake, so we just stopped in front of a random building and I used a window ledge as my table.

IMG_1536

I don’t really enjoy this portion of my program. For starters, my shake tastes best when it’s very cold. When I’m going to be out for the day, I store my insulated cups in the freezer overnight and then fill them with ice cold water before we headed out. But it was 95 and humid, and by the time it was shake time, the water was not that cold. Which meant my shakes were not that good.

In general, I have a very positive attitude about the fact I’m on a mostly liquid diet. In fact, I get upset with myself when I feel down about it because I know many people have far worse problems, and would happily trade with me. So, I do my best to be accepting.

But I’m human, and it’s hard to stay positive 100% of the time. I struggle most with optimism when on vacation. Food is part of the fun, right? New cities, new restaurants, treating yourself to things you wouldn’t normally eat. Unfortunately, I don’t get to experience that when traveling. I do eat solid food for dinner, but I’m on such a restricted diet due to food sensitivities that eating out in a new city is not much different than eating at home. And that makes me sad sometimes.

When I’m feeling sad about what I’m not eating, I try to focus on gratitude and perspective. Gratitude that my problems aren’t worse. Gratitude that my liquid diet most likely saved my life. (If you’re new —  I bottomed out at 81 pounds before the liquid diet. My hair was falling out. I hadn’t menstruated in years. You could count every bone in my rib cage. In short, my body was failing.)

Is giving up chewing a reasonable price to pay for leaving that place of desperation? Of course it is. But it doesn’t mean it’s easy. Especially since I have no idea what the end game is. Will my body ever be able to process enough food to maintain life? Will I ever be able to transition back to a more normal diet? I have no idea.

That’s where perspective has to come in. My liquid diet is a difficult part of my life. But my life could be much more difficult than it is. And many people suffer in dramatically worse ways than I do.

In that light, how can I feel sorry for myself? How can I dwell in the negative?

Did I have a great food experience in DC? No, not really. But did I create priceless memories with my daughter on the eve of her new life in college? Absolutely.  And I absolutely would not have had the stamina for that trip absent my weight gain from a liquid diet. No way. No how.

When I’m feeling down about what I’m not eating, I try to refocus my energy toward what I’m doing and experiencing. And I’m doing and experiencing a lot. And the reason I’m able to do and experience so much is because I’m sipping instead of chewing.

Now, that’s something to chew on.

 

 

 

Scenes From A Vacation.

I was too busy enjoying our vacation to write about it, so I will do a little recap now that we are home. First and foremost, it was a wonderful opportunity to spend quality time with our daughter before she heads to college. I will savor those moments with her for quite a while.

On the health front, it was a pretty good week for me. My anxiety was mostly in check, my energy was pretty good, and my GI tract was mostly cooperative. That’s about all I can ask for.

Here are a few highlights:

IMG_1281

For me, provisioning is the first step in any vacation. Since this was a longer one, I shipped the two key ingredients of my life (I am on a mostly liquid diet): Absorb Plus Protein Powder, and MCT Oil (easy to digest) which adds critical calories to my shakes. Shipping in advance saves a lot of hassle, not to mention suitcase space.

IMG_1303

We hit the beach the first day, and I had a big reason to smile. Namely, my bikini bottom fit.

Let me explain.

I’ve had many low points during my struggle with chronic lyme disease, but one of the lowest lows came about two and a half years ago when my husband and I were on vacation in Mexico. It was February, and I had not had my bathing suit on since the previous summer. I was still in the stage where I was losing weight at a rapid clip in spite of desperate attempts to gain weight. I had long since given up weighing myself because it was causing too much stress.

Well, my bikini bottom told the tale the scale didn’t.

As I pulled it on that February day I was horrified to find it literally would not stay up. My legs didn’t even fully fill the holes. It was one of the most terrifying experiences of my life, and a very tangible sign I was losing the battle with my GI issues.

My husband and I decided right then and there that something had to change, and fast. As soon as we returned from vacation, I started with a new nutritionist, who put me on the primarily liquid diet on which I remain today. I haven’t regained all my weight, but I’ve found a lot of it, and I had no trouble keeping my bikini bottom up last week. I don’t have the words to describe how good that felt. It’s also a nice reminder for the times when I feel a little down about all the things I’m no longer eating. I can eat real food and lose weight, or I can be on a liquid diet and gain weight.

It’s not really a difficult choice is it?

IMG_1342

My daughter is obsessed with rock climbing, so there was no chance vacation would go by without at at least one trip to the gym. She’s been encouraging me to climb for years, but until recently, I’ve never felt well enough to give it a try. I’m definitely a convert, and I love it. On this day my body was pretty tired so I didn’t climb much. But it always feels good to get on the wall, and every time I do, it’s another reminder I’m slowly but surely getting stronger.

IMG_1305

We tend to eat in a lot on vacation, as I feel best with home cooked food (and my family does too). But we also go out a couple of times. In this instance, I was thrilled to find a grass fed beef burger, which is the only type of beef I will eat as it’s much healthier than grain fed.

I’m on the Paleo diet, as it’s it is anti-inflammatory, which helps combat lyme induced inflammation. That means no bun. But the burger place was happy to do a lettuce wrapped burger for me, which was a special treat. This will sound funny, but on the Paleo diet, I rarely get to eat anything with my hands. Think: no buns, no bread, no taco shells, no wraps, no pitas. So it’s a real novelty for me to wrap my hands around a burger and dig in. I absolutely loved it. I supplemented it with a side salad, as fries are not on my personal menu.

IMG_1349

I feel like I look a little tense in this photo, but I’m sharing it because it’s been a long time coming. We have been visiting the same beach each summer for many years. And every year my daughter does surf camp. And every year she asks me to do it with her. And every year I had to say no because I did not feel well enough or strong enough.

This was finally the year I was able to say yes. Yea.

It was way more exhausting than I expected, but I did it and was happy to have yet one more sign that I’m heading in a good direction.

IMG_1360

The last night. The end of a vacation is always so bittersweet. Especially this one, as it’s also the end of an era in a way, as we are about to enter the college phase of our program. I was definitely sneaking in extra hugs whenever possible.

IMG_1371

On the way home we had a long layover in the Atlanta airport, so there was time for a sit down lunch. Of course, that didn’t mean anything different for me, as I still had a protein shake. But it was nice to be able to enjoy it with warm water (my beverage of choice) out of a tea cup. You can see my shake cup by my right wrist.

I used to have a very hard time sitting at the lunch table sipping while everybody else chewed. But I’m to the point now where nine and a half times out of ten I’m perfectly fine with it. I just accept it as my reality. At least for now. And honestly, I’d rather sip and feel good than chew and feel badly.

And that’s a wrap on vacation.

Now I need to go and deal with the piles of laundry and mail……..

When The Baggies Come Out, It Means We are Heading Out.

IMG_0914

I’m not going to lie. I long for the days when packing for a trip simply meant putting clothes in a suitcase. Now, clothes are the least of what I pack, or even give my attention to.

Since I am on a primarily liquid diet, my special, pre-digested protein powder is the first, and most important thing I pack. I have it down to a pretty good system. And while the liquid diet has made traveling exponentially easier, it’s a bit of a process to manage it. I thought I’d give you a glimpse of what a few days on the road with my liquid diet look like.

For starters, here are the basics:

  • I mix each shake with a cup of water and 1 tablespoon of MCT Oil. The oil adds 120 calories, and is easy to digest.
  • The shake separates if I mix it in advance, so I mix each shake when I’m ready to drink it.
  • When on the road, I use insulated cups to keep my shake as cold as possible, as it tastes better that way.
  • When going through an airport, I cannot add the water until we get through security, but I can add the oil ahead of time. So, I add the oil to each cup before we leave the house so I’m not messing around with oil and measuring spoons at the airport.
  • When we get on the other side of security I buy a bottle of the coldest water I can find and pre-fill my cups.
  • I use a small backpack as my purse, and my secret is it carries my shakes, along with my lipstick, wallet, etc. This is important to me because I used to carry a cooler around, and it felt so unnatural. Now I just feel like a normal person with a backpack.

OK, those are the basics, and here is what it looks like.

Step 1 is above. Pre-pack protein powder for each day.

Step 2. Buy water at the airport and mix shake.

This flight was at lunch time, so I’m making “lunch” here. I am measuring the water into a mason jar with line markers, as my thermal cups do not have measurements on them. My shake only tastes good if the powder to water ratio is correct.

A few other things to note. You will see my backpack to my right. You would never know it’s basically a life support system, right? You can also see the baggie of protein powder I packed at home, along with a cup of hot water I picked up at the airport. Whenever possible, I drink warm water along with my shake, as the warm water helps my GI tract relax.

IMG_0928

Step 3. Sip. Slowly.

Here I am enjoying my lunch at the gate while we are waiting to board. Because the shake is so calorically dense (500 calories per), and I have very slow digestion, I have to sip it quite slowly. It usually takes me about an hour to get a full shake down, and a half hour to drink a half shake. I do full shakes for breakfast and lunch, a half shake for an afternoon snack, real food for dinner, and a half shake for “dessert”.  This routine has helped me gain 26 pounds over two years.

IMG_0934

Step 4. Get to hotel, wash shake cups and prep for the next day.

If we are going on vacation, we always stay in a house with a full kitchen to make it easier to manage my food and shake needs. When we are in more of a road trip situation, as we were here, my accommodation of choice is Residence Inn by Marriott. Each suite has a full kitchen, so it’s very easy to deal with my shakes. I absolutely hate washing my shake cups in a hotel bathroom sink and avoid it at all costs. Gross.

Here my cups are all nice and clean and ready for the next day. I will usually chill them in the freezer overnight, so they will stay cold longer the next day.

IMG_0971

And that’s the end of this day. Now let’s take a look at the next day, which was a long one. We were at my daughter’s college for freshman orientation. We had to leave the hotel first thing in the morning, and would not return until after dinner. That amounts to a lot of preparation on my part. So, here we go with day two.

Step 1. Prep.

I measure the water and oil into each cup, grab the baggies for each meal (I label them in advance), and load everything up into my trusty backpack.

In this case, I mixed my breakfast shake at the hotel and sipped it on the way to campus. Pictured in the photo are my lunch, afternoon snack and “dessert”.

My morning supplements are in the bottom right of the photo.

IMG_0974

Step 2. Hit Campus.

Here I am on campus, ready for a full day of sipping and learning. I am finishing up my breakfast shake, and the rest of what I will need for the day is in my backpack. Nobody is the wiser.

IMG_0977 2

Step 3. Lunch.

Lunch was served in one of the school dining halls. My husband enjoyed chili and sushi, and I had….. a shake.

IMG_0982

Step 4. Meditate.

OK, this one has nothing to do with my liquid diet, but keep in mind I am not fully restored to my old self. As such, I still get overwhelmed pretty easily when I am in a situation with a lot of people and a lot of stimulation. And the orientation featured an abundance of both.

We had a short break after lunch, so I high tailed it over to the prayer chapel, as I guessed it would be empty, and thankfully, it was.

First, I sat on a chair and closed my eyes and breathed. That wasn’t enough. I was still feeling quite anxious. So, I dropped to the floor, which usually helps ground me. That was an improvement, but still wasn’t getting the job done. Then I took my shoes off, grounding myself further. Then I was finally able to breathe easier and shed a few tears, which is usually a sign I’ve finally relaxed enough to release whatever emotions I need to.

After about a fifteen minute meditation, I was feeling improved enough to get back in the game. I wasn’t completely calm, but I felt better then before I meditated.

Yes, I know it’s a little weird to take time out from a college orientation for a cry/meditation break, but when you live with anxiety, sometimes you just need to do what you need to do.

IMG_0985

Step 5. Afternoon Snack.

I was ready for a snack as one of the afternoon sessions approached, so I quick mixed it up before the session started. In this case, my husband did the shaking for me. Incidentally, it takes quite a bit of shaking to make my shake nice and smooth, so I need to factor that in if I’m in a public place, as I try not to call too much attention to myself.

IMG_0988

Step 6. Dinner.

As with lunch, dinner was served in one of the school dining halls. I was wondering how it would work for me, as I have many food sensitivities. But the dining hall staff literally bent over backwards in order to prepare a special meal for me, and I was extremely grateful.

I forgot to take a photo until I was mid-meal, but here’s what it looked like. A little more oily than I would prefer, but beggars can’t be choosers. I didn’t eat much anyway.

IMG_0989

Step 7. “Dessert.”

They had us on a tight schedule, so I had to mix my “dessert” up and bring it with me to the first post-dinner session. Typically, my shake has more calories than what I consume for dinner, as I’m only able to eat small portions, so my dessert shake is actually more important than whatever food I eat.

IMG_0997

Here’s my shake on the chair next to me during the session.

IMG_1002

Step 8. Get everything washed up and prepare to do it all again the next day.

IMG_1007

Step 9. Collapse.

Yes, that was exhausting. First, it was information overload. Incredibly useful, but a lot to process. Then dealing with my shakes in the midst of it all was honestly, a bit stressful, and quite the hassle.

But right now, this is the only way for me. My GI tract cannot process enough actual food in order to maintain anything even close to a healthy weight, so what choice do I have, really? I can sip and continue to gain weight, and feel half way decent, or I can eat, and lose weight, and feel crappy.

I mean, when you look at it that way, it’s not even a discussion, right?

So I will continue to sip while also trying to heal my fractured gut, and never give up hope for a different future.