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!

A Little Plus A Little Equals ALOT!

There is something special about the Lyme Community.  The way they support each other, the way they stand up for each other, and how they advocate for each other, they have to because no one else outside the community is doing these things.

The name, Seven Slices of Lyme represents the importance of us Lymies sticking together!  By ourselves we are sick, broke and alone, together we are able to accomplish what seems impossible to accomplish.

The emotional support is a Lyme survival necessity.  Suicide in the Lyme community is frequent, I would wager more frequent then with any other disease.  I never really understood why someone would contemplate this permanent, unchangeable act until I became totally disabled.  I never considered it myself, but I have children, a wonderful husband along with family and friends who support me.  Still, even with all I have to live for, I completely understand why someone who didn't have these things would make the decision to end their suffering.  To be so sick you can't leave your house, can't watch tv, can't read a book, can't have a conversation is more then anyone should have to bare.  This isn't just for days, but it can be for months and years.  To add debilitating pain to all of the other symptoms and then the fact that treatment is more expensive then most people can afford makes suicide, for many, look like the only option that contains HOPE.  We all need hope to move forward in life, and if suicide appears the only way to end the misery then suicide become the only source of hope.

The support of Lyme sufferers and each others attempts at advocacy is heart warming.  I am amazed at what so many house bound and bed ridden patients are able to do just from their computer.  I am even more amazed at how some of these people actually leave their home to attend Lyme Awareness functions, fundraising events, protests, and vigils.  We are a group in desperate need of help, but as of yet, we are on our own in raising awareness and asking for change.  We are determined and unrelenting in educating our friends and family.  We continue on despite loss of relationships, criticisms, and a decline in our health from the stress and energy that goes along advocacy.

Supporting each other financially is where we struggle the most.  It's financial support that we wish we could receive from those outside our community, those of you living in the world of good health.  You see, if we are to get well, we need to pay for appointments, pay for medicine, and pay for supplements.  Many of us have two or more immediate members of our family being treated.  Most of us have food allergies or sensitivities that make even paying for groceries an overwhelming burden.  This is where the lyme community really struggles because so many want to get well so they can do more to support others but are stuck in the shadow of dealing with the immediate needs that come with just trying to stay alive.

Personally, I am currently finding it difficult to talk to people who are sick and telling them about Lyme because I am sending them on a journey that seems impossible.  I mean really, you know someone who is sick, barely keeping their head above the water financially, and I plan on telling them, "Hey, I have the possible answer you've been looking for...but sorry, it will cost x amount of dollars to simply get the right testing, and x more amount of dollars for years into the unseeable future to be treated..oh,  and by the way, FINDING a doctor to diagnosis and treat you will take alot of time and energy, you will have to wait months for your first appointment and maybe travel hours to even get to the doctor. "   Makes me often say nothing to others who I think may be seriously ill with Lyme Disease and/or co-infections.

So, for now, I am going to focus my financial support on those of us who have taken the actions steps to get help.  We have done what we needed to do to come up with the funds to be tested and diagnosed.  Many of us, are tapped dry.  We have used up all our financial resources, even been given community support, but here many of us sit, unsure of how much longer we can pay for the medicine, appointments and supplements that our keeping us alive.   How can we support each other financially if we can't even support ourselves?  How can we think about others when we are scared about what will happen if we stop treatment.

I have been thinking about this a lot. One thing that came to mind is the 1 or 100 rule.  Now usually, I use the 1 or 100 rule to teach students the concept of why there are some rules out there that may not make sense but are important to keep order.  For instance, in a classroom, if it's not ok for 100 kids to get up and walk around without permission, then it's not ok for 1 kid to do that.  So, what if we turn this rule upside down and apply it to the lyme community.  What about saying: What 1 Can't Do, 100 Can!  

Think about it.  What if once a week, ALL of us Lymies donated $1 to an online cause.  One week $1 could go to help with the financial costs of protests, the next week $1 could go towards someone's gofund me page.  There are thousands of us online, so if we all did this then $1000's a week would go towards financial support of the lyme community!

Seven Slices of Lyme is the attempt of two families who have been blessed with help from our community, to give in return.  Not going to lie, the seven of us are still in dire need of financial blessings, but we also know there are many of you in more need then we could ever imagine.  So, it's our commitment to share a percentage of all we raise with other families who need support.  The month of October we want to help Dawn.  Here is her gofund me page: http://www.youcaring.com/medical-fundraiser/help-fund-my-late-stage-chronic-lyme-disease/114247 .  Now, we aren't raising a lot of money, not yet anyways, but what if everyone who read this blog gave $1 and then shared what you did and why on their social network pages.  One dollar then could turn into many dollars!

Our fundraising attempt for October is to sell a book I (Holly) wrote called "Developing Black Belt Character".    I (Holly), have decided not to take any profit from this book this month and donate my percentage to Dawn.  Even after this month I will donate a large percentage of the profits to other Lyme suffers.  Now, this effort won't do much if nobody buys the book.  Buying the book will benefit others in two ways, first the profits will go directly to someone with lyme disease, second, the more book sales, the more likely it will be highly rated on Amazon which, of course, will result in even more sales!  Your purchase now would be helping others into the far future.

I strongly encourage you to take up my challenge, one dollar a week, and lets see how far that money goes!