Mission Impossible: Feeding a teen with food aversion issues due to lyme disease

As part of Jenna's attempt to change her lifestyle to better prepare her body for fighting lyme disease, she has chosen to cut gluten out of her diet.  She knows she should also be cutting out sugar, but doing these two big changes at the same time is a difficult feat for an 18 year old.  So, we are sticking to a strict gluten free diet and for now, doing a "less-sugar" diet. We are cutting out sugar in all the simple ways we can find and replacing sugar, when we can, with more wholesome alternatives such as honey.

For many people with lyme, the act of eating is very difficult.  Many of us have restrictive diets, add this to severe food aversion and you find yourself hungry, cranky, and with no food options that seem edible to you.

Our adventure started out yesterday when we promised that grocery shopping would be the one thing we would get done today.  We skipped church so that we would have the needed energy to get to the store.  Our cupboards were getting low on gluten free options.  The options that were available required cooking and quite honestly, none of us feel like cooking.  Jenna's husband would have been more then willing to make Jenna something, but she hates having him wait on her.  She doesn't want to feel like she's taking advantage of him.  Needless to say, Jenna found something to snack on while she waited for me to make the grocery list.

As I worked on the list I began to feel quite dizzy.  I began to abbreviate items, and make notes on the list that only I understood.  Jenna told me what she would like to have available for food choices and I added them to the list, although I wasn't specific in brands or flavors.  Once the list was complete I stood up to get ready to go.  I went to take my coffee cup to the sink but took it to the upstairs bathroom.  I stood in the bathroom looking in the mirror processing how I could use a cup to clip my bangs back.  I had to tell myself that I was holding a cup, not a clip.  I then had to tell myself the cup goes in the sink downstairs and the clips are still in the living room.  I barely made it down the stairs, crashing into the wall when I got to the bottom.  I walked into the living room and fell back against the wall, standing with my hands spread apart in my attempt to catch myself.  Scott tried to ask me what was wrong, all I could get out of my mouth, with much effort, was, "can't go".  Scott then assisted me to the couch.  I let him know that I felt a seizure coming on.

Now, poor Scott, who is completely overwhelmed in stores, had to go grocery shopping.  Paul offered to go but Scott didn't see the point.  I attempted to clarify my list as Paul rewrote in a way that anyone could understand.  During all of this, I began to have seizure activity.  Any sudden noise or movement made my feet and hands fly out in an extreme startle response.  Poor Cato, our dog, crawled to the top of the couch shaking.  I tried to speak to him with calming words, but found myself yelling as I do when I am seizing.  Poor Cato found himself outside, under the jeep, shaking.  This is what he does when he's upset.

My seizure continued on past the five minute mark so I took my PRN to help it stop.  I was pretty much recovered when Scott returned from his shopping trip.  He came into the living room shaking like a leaf because he had over extended himself.  Paul and Jenna went to unpack the grocerys...but then tragedy...none of the foods Jenna had said she could eat had been bought.  It was my fault for writing a list that was so cryptic.  Unfortunately, the hunger, and frustration over her difficulty in tolerating certain foods, caused an emotional moment.  She doesn't want to be this picky, but once she gets it in her head that something is wrong with a food, she can't then bring herself to eat it.

This is when Paul and I decided to go on Mission to Feed Jenna!

So, after a brief cry, we set Jenna up in bed with her comfy pillows and blankets, her laptop and of course Paul the Cat.

My medicine had stopped my seizure, but it's not a drug you would take and then drive.  I could barely walk in a straight line..ok, barely isn't even close...I walked in a more circular motion getting to my destination in a round a bout way.  Paul drove to the store and then I anchored myself to a shopping cart in hopes that I could walk more normally and less like someone who was intoxicated. I did get a few looks, but for the most part I held it together.

It was a gluten free shopping banaza, yes some food included sugar, but at this point any food in her stomach is a good thing.  She hasn't been eating much and is loosing weight.  Paul was a significant amount of help in picking foods.  He has been the one dealing with Jenna's difficulties eating.  He was super excited to get back home and show Jenna all of the choices we brought for her.  It worked out well because Jenna feels guility when we spend a lot of money on food, but I reminded her we are trying to get our medical expenses up to 10% of our income so that we can claim it on the taxes.  Telling her she was doing us a favor gave her permission to be joyful of all the easy food choices available to her.  The bonus is that anything she decides she can't eat, I can eat it for her.  I have no food aversion and am also gluten free. I don't mind at all basing my diet on eating the foods that Jenna develops a disliking to.  She knows that her aversion to foods is unreasonable, and difficult for the rest of us, but at the same time...this is what lyme is doing to her body.
 

We found gluten free crackers, a green smoothie full of antioxidants, snack packs that held cheese, fruit,nuts and vegetables.  They make super easy lunch options that require no cooking.

Along with gluten free bread and quality sandwich meat, we got a few treats.  We felt Jenna deserved them and we are hoping they will help her find enjoyment in eating again.  So we snuck in some blueberry muffins and cookies.  I almost bought a gluten free coffee cake for myself but one look at the calorie count was enough to stop that impulse.

 To top it off we got gluten free frozen waffles, pancakes, and french toast.  We made sure we were stalked up on sugar free syrup!

So now, we are home and Jenna is much happier having a full belly.  I am back to recovering from my seizures and prn on the couch.  If anyone I knew saw me out, then they know I was walking funny and acting funny do to lyme disease.  If you saw me and didn't know me, you probably wondered what I was on.  That's fine, you can judge if you want.  It doesn't bother me.  I have learned through this that I can never judge somebody by what I see.  We never know the back story to why someone is behaving the way they do.  They may have been like me, sick, doped up on meds,a sick daughter in crisis, a father to sick to understand the shopping list, and a son-in-law just wanting to know what he can do to help.

Oh, shoot! I am just looking at the clock and realizing my youngest has youth group in fifteen minutes.  She has been excited to go but is probably sound asleelp. So I guess I will end this blog on my shopping mission as I embark on the next mission of the day.  Operation getting Chelsea out the door and to youth group on time.  I will some day have to share how this mission is often more complex then feeding jenna is!