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Chronically Thankful

Happy Thanksgiving!

For me, Thanksgiving is a little different since it obviously won’t revolve around food. I rely on my tube feeds and IV fluids for nutrition and hydration, and food isn’t a big priority for me. Because of this, I get to focus more on the real meaning of Thanksgiving: it is a celebratory day at the end of harvest where we express gratitude for all that we have.

I may not have had a harvest, but I have so much to be thankful for. Some people are surprised at how often I post about my gratitude and positivity towards life, but my illnesses have only made me more thankful for all that I have. So, while I won’t be saying thanks for a good meal or a nice glass of wine this Thanksgiving, here are a few things I am thankful for…

  1. My family

Okay, the first one is a little cliché, but for me, my family is more than just a family. At 20 years old I still live at home full-time with my parents and younger sister. My parents are my caregivers; they take me to appointments, make my tube feeds, pick up medications, and on my worst days help me in and out of bed, mom washes/brushes my hair, and they do anything else I may need. My parents and sister are also my best friends. I spend almost every day at home and they are pretty much the only people I see (and Sam– Laura’s boyfriend 🙂 ); they work hard to find things to do to try to entertain me and keep me occupied. Without my family, I wouldn’t be here today.

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  1. My dogs

My rescue pup, Baxter, is my #1 form of therapy. He is better than any medication I’ve tried. Being home alone a lot is made so much easier by having dogs. Baxter is always by my side and knows when I’m having a bad day. He loves to cuddle up with me (and my heating pad) when I need a nap, sit in the sun, take a walk, or just lay in bed and watch some Netflix. He is a fabulous buddy to have around 🙂

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  1. Tyler

Almost five years ago I was blessed enough to be assigned Tyler as my challenger baseball buddy. Every day I am thankful that he came into my life and that he continues to make it brighter every time I see him! It has been such a gift to see him grow and to have him by my side to shed some light on things throughout this journey!

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  1. Insurance

I’m thankful for my health insurance. Even though it can be a pain in my butt when it doesn’t cover something or fights me on a medication/treatment, I will always be thankful that I have it. Some people are not so lucky.

  1. Living in a beautiful place

We recently moved into the woods in Union Springs. We are surrounded by trees and live a short drive/walk from a reservoir and several ponds and creeks. It is so peaceful and beautiful up here and we live in an area with such gorgeous mountains, farms, and parks. I love having such beautiful sites, it is such a gift to be able to go for a drive and see such incredible views so close to home.

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  1. Doctors and Nurses

I can’t forget all of my great doctors, nurses, and pharmacists. They work so hard for me and for all of their other patients. I have amazing nurses who work around the clock helping me communicate with the doctors, schedule appointments, and think through symptoms and minor medical dilemmas. My doctors work so hard with patients whose cases are so complex. And my pharmacists help keep track of my meds, interactions, and refills. I literally wouldn’t be here today if it weren’t for them.

  1. Warmth

I’m always cold. September-April you can count on me being bundled up and under a heating pad. I am thankful for my sweaters, hats, heating pads, heated blankets, fuzzy socks, and mostly for my comfy bed! Also, of course, for my home and heat; not everyone is so lucky, so take time to be thankful for warmth this year!

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  1. Community

I’m also very thankful to have a supportive and loving community. My community here at home has shown my family and me so much support throughout my journey with chronic illnesses and it has made such a difference for us. Knowing you have such a big support team is such a gift, and not everyone has that.

I’ve also found a community of people living with illnesses just like mine through online support networks. These sites have let me connect with people from all over the world who are going through the same thing that I am. I’ve made great friends who really understand what I am facing and I’m even lucky enough to hang out with some of them in person!

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My list could go on, but there’s a taste of what I’m thankful for! I also think this year it is important to remember that many of our Native Americans are facing brutal conditions in North Dakota while they fight for their right for clean water and for their sacred lands at Standing Rock. Thanksgiving is a day that celebrates a peaceful meal between the settlers and the Native Americans, yet this year there is no peace at Standing Rock.

There are many things we often take for granted, and today is a day to be reminded of how much gratitude we should have for all of these things. I hope everyone has a great Thanksgiving and can find lots to be thankful for!

Cleveland Update!

Here’s what happened in Cleveland!

On Tuesday the 15th we were in Cleveland to see Dr. Cline at Cleveland Clinic and follow up on my smart pill test. For those who don’t know, the smart pill is literally a pill that you swallow and it records pH, temperature, and pressure throughout the GI tract as you move it through over the course of 5 days. This is a motility test (movement test) looking to see how well your GI system is functioning.

Well, Dr. Cline explained to us pretty much what we already expected to hear: my whole GI tract is now being affected by dysmotility. This means none of it is moving like it should.

Specifically, my stomach took 27 hours to empty (it should be less than 4) and my colon did not empty in the time that the pill was active (120 hours—it should empty in less than 48 for someone my age or 59 for the test’s basic criteria). We are not sure when exactly the pill moved out fully (hopefully it did!).

The doctor said that this explains why I don’t tolerate my tube feedings well and why I am unable to gain weight at this point. However, due to some elevated liver function tests, I’m unable to start IV nutrition (TPN) right now, but honestly that’s okay with me. I’ve been on TPN in the past and although it is an important option to have and is saving the lives of many of my friends with the same conditions (Motility disorders or Digestive Tract Paralysis) as me, I’m not ready to go back on it at this time.

Our second option was a whole intestinal transplant. They would remove my stomach, intestines, and colon and replace with someone else’s stomach and intestine. The colon would not be replaced. However, this is not a guaranteed fix and with my connective tissue disorder there’s a good chance it wouldn’t heal correctly or my body would break down those organs with time, too. It’s not a good option for me at this time and is left at the bottom of my list, which leaves me with only one option for treatment.

For now, we are trying to get a new treatment approved by insurance. This is IV immunoglobulin therapy. Essentially we would be trying to reboot my autoimmune system and hoping that my body would stop fighting itself and in that process my GI tract would speed up and start working better. This would most likely be a monthly treatment. It is a very expensive treatment and can be hard to get approved, but working with multiple specialists, we are hopeful!

I also plan to look into some more natural and homeopathic treatment options like natural antibiotics and supplements, acupuncture for pain, and multiple other things that have been suggested by all of you!

I am trying my best to find a better treatment option and work toward a healthier self. Thanks for reading and thank you for all of your thoughts, kind words, and love that you continue to show me. It truly makes a world of a difference!

First Post– Holiday Spirit

Hey guys! So, for my first blog post I didn’t want to start out with anything too heavy, but with Thanksgiving only a week away, I thought why not write a bit about what the holidays are like for someone living with chronic illness!

This will be my 4th year of holidays majorly affected by Gastroparesis. In fact, my Gastroparesis started in November of 2013, right before Thanksgiving. Little did I know, three years later I still wouldn’t be able to eat a Thanksgiving meal!

Although I really miss all of the delicious foods that I loved eating throughout the holidays and sometimes this time of the year can be stressful; for the most part, I still really enjoy the holiday season. I love to cook and bake for others and occasionally I can make something that I can have a bite of, too. I also just love the holiday spirit that seems to brighten everyone’s mood during this time of the year.

My health has really taken a hit this year, and I’m not able to do a lot of the things I love to do like volunteer, babysit, go to school, and regularly spend time with people outside of my home. However, I do intend to make the most of the holidays in every way I can!

Here are just a few of the things I love about the holidays:

  1. Picking out and decorating the Christmas tree
  2. Baking Christmas cookies of all sorts
  3. Snow—even though I barely leave the house when it’s so cold!
  4. Christmas movies
  5. The gift of giving— whether it’s Christmas shopping, giving away Christmas cookies, or donating to the less fortunate, I always find that the holidays are full of generosity and I love to participate in the giving 🙂

This holiday season I will be taking each moment to enjoy life’s small gifts. I encourage you to appreciate everything you might normally take for granted—a functioning GI tract, the roof over your head, a mother who cooks for you, and just being here to celebrate another holiday season.