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Chronic Migraines; More than Just a Headache

When I think of my migraines I picture the New Years Eve ball drop and the huge build up to the 60 second count down to when the ball drops and everyone cheers, people kiss, and confetti flies. Well picture that except every day with chronic migraines you live with that 12,000 pound ball in the back of your head just counting down until the next wave of pain comes.

But the build up to this moment isn’t Ryan Seacrest and champagne and glittery 2k17 glasses, it’s ringing ears and spotty vision, neck pain, nausea, and all sorts of other symptoms that come along with migraine auras. And then the ball drops and the pain hits full force and you can’t look at any lights or be around any noises, you just lay in a dark room for hours on end taking emergency migraine meds and pain medications (that may or may not help) and waiting out the pain. There’s no cheering or kissing and no confetti, just more nausea, light sensitivity, pain, weakness and fatigue.

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A pretty typical look for me; ice or heat on my head, a mask on my eyes, and my dog cuddled up right by me. (attractive, right?) I actually brightened this photo so it was more clear, but I stay in a dark room almost all day to prevent migraines.

The problem with these migraines is that they can last for days and sometimes the pain comes and goes so you never know when it’s safe to leave the comfort of your safe space. Will sunglasses be enough to save you from the light? Will the meds last long enough for your outing? How many hours (or minutes) do you have before the pain hits again?

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I never leave the house without my sunglasses!

What people don’t understand about migraines is that they aren’t just a headache. They’re a full body experience. They affect your head, your eyes, your neck and back, your stomach, your muscles, and your overall well-being. The symptoms for one person’s migraine may be different than the next, and your migraine today may be different than that of tomorrow.

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Migraines aren’t pretty; they leave me in bed for extended periods of time and often asleep more than I’m awake.

Migraines can be completely debilitating for many people, both young and old. They can lead you to be bedridden for days at a time and cause you to miss extended periods of school or work. You often can’t look at a phone or computer screen, read books, or do much of anything during the worst parts of a migraine, so they are extremely limiting. There are many treatments for migraines, but they don’t work for every body and it takes time to find the right treatment for you.

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Botox, anyone? Yes, botox can be used to treat migraines! It can also be used for gastroparesis!

When someone says they have a migraine, don’t brush it off like it’s just a headache. Migraines are a serious condition that affects a large portion of the population. Chronic daily migraines are less common but even harder to manage. It’s important for someone living with these conditions to do what they need to in order to take care of themselves.

Migraines are more than just a headache. Be aware and be compassionate; though the pain may be invisible, the suffering is tremendous. Small acts of kindness and care to those who are suffering are such a gift.

Here’s to the only ball drop of 2k17 being that in NYC.

A “Non-Hallmark” Christmas

Let me start by saying that I love Christmas. I’m one of those people who is ready to start baking Christmas cookies and watching Christmas movies right after Thanksgiving (much to the dismay of my sisters 😉 ). The whole season just seems so… jolly! I love seeing people light up with holiday spirit; it just seems to bring out the best in people.

This holiday season I feel incredibly blessed in so many ways. We recently moved into a beautiful new home on an amazing piece of property. Although I sometimes miss our old house, I love living in the woods and our new home is so accommodating to my needs with my illnesses as well as the needs of my family.

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The new house!

I’m also so thankful for my family who continues to be by my side through my toughest times. I could (and probably will) write a whole blog post about how amazing my family is, but for now I’ll just say that I literally wouldn’t be here today without them.

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My family (minus one!) in NYC last Christmas! That trip just about did me in, but it was so fun!

I’m thankful for all sources of warmth—my home, my bed, my heating pads, my hats and coats, and all my fuzzy blankets. Of course I’m thankful for my dog, Baxter who keeps me company every day and brings so much joy to my life! And I am thankful to have good health insurance and a great set of doctors working with me to find a good treatment plan as my health continues to be a challenge. The list goes on, but the general idea is that I’m overwhelmed with gratitude during this holiday season.

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Little man in his Christmas sweater 🙂

That said, even though I love Christmas and I feel blessed to have so much to be thankful for this holiday season, over the years I have also come to understand that not everyone has a perfect “Hallmark Christmas.” Many of us are plagued by illness, loss of a loved one, poverty, family discord, and other things that may affect our holidays.

This will be my 4th Christmas living with severe chronic illnesses. My illnesses never keep me from having a joyful Christmas, but they do affect how I get to celebrate. My day won’t consist of eating Christmas brunch or Christmas dinner with my family, there won’t be any sweet treats in my stocking, and I won’t be running around outside or wrestling with my cousins like I used to do or sitting and sipping wine with my aunts and grandma.

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My delicious (not) Christmas dinner! At least my pole is festive 🙂

This time of year is actually when my illnesses tend to be at their worst. My pain levels are high, my nausea is relentless and completely overtakes me at times, I have daily migraines, and many days I’m asleep more than I’m awake. I’m incredibly thankful that this year I have the means to stay at home and out of the hospital for the holidays by relying on my feeding tube and my port (a central line in my chest that acts as a long term IV) to stay hydrated and get in enough nutrients to ride this flare through.

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Pretty much me right now.

My Christmas Day will include IV saline, tube feeds, nausea and pain medication, and napping in place of breakfast casseroles, eggnog, cookies, and snowball fights, but that doesn’t mean I won’t love it. My family helps make Christmas special for me every year; it may not be ideal, and it may not include any Christmas miracles, but I have so much I am thankful for and I will have so much to enjoy on Christmas day.

 

Not everyone has a perfect “Hallmark Christmas,” but that’s okay. Celebrate as much or as little as you are able. Celebrate in what ways make you happy. Take care of yourself this holiday season and help others do the same.

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Having these illnesses has really widened my perspective. It is important to keep in mind that not everyone has a perfect holiday as we go about celebrating this season. The holidays are a time of joy, love, generosity, and gratitude and it is so important that we keep that in mind as we share this time with our loved ones as well as with those we may not know as well. Not everyone is full of holiday cheer, and that isn’t a crime. I encourage you to always give people the benefit of the doubt and simply spread love this holiday season.

 

 

 

A Balance of Hope

Did you ever write a letter to Santa asking for a puppy or maybe for the new xbox360? And maybe Santa brought you a stuffed animal puppy or FurReal friend instead? Not what we meant, Santa. And maybe instead of the new Xbox he brought a new game for the totally lame game cube you’ve had for years? Or maybe something completely random like ANOTHER box of Legos? I mean, come on Santa, that is so elementary school.

Well, we’ve all gotten our hopes up for things that haven’t happened before. We recover eventually, but it can be pretty disappointing! I’ve learned that with my chronic illnesses, I can’t get my hopes up every time I go see a new doctor or try a new medication. Some people have trouble understanding this, but for me, there’s a big difference between having hope and getting my hopes up. The latter of the two is the one that is much more dangerous for me.

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Passing time in the doctor’s office by snapchatting! Smile and designer bags under my eyes 🙂

 

There are a couple of reasons for this, the first being that I simply see too many new doctors, each of whom comes with their own plan for therapies/treatments/medications, and they don’t all work. The truth is, most of them don’t work! Chronic illnesses are very complex, and there aren’t very many approved treatments for them, so we (the doctors and patients) end up putting together treatments of our own and it is a lot of trial and error. Our doctors work really hard for us, and I am so grateful for that! Sadly, a lot of these meds just aren’t made specifically for our conditions and so they often don’t work out. Sometimes the side effects are too much, insurance doesn’t always approve treatments, and other times the medication just doesn’t help. Either way, if I thought each medication were going to be the fix-all, I would be incredibly disappointed much too often.

The second reason I try not to get my hopes up is that my illnesses are chronic. This means they likely won’t completely go away. I hope every day that we find a treatment plan that lets me live a much more comfortable and high functioning lifestyle, but I also know (at this point) there is no cure for my illnesses, so I’m always at risk for my symptoms coming back. This can be a daunting thought, but I work with some great doctors and have a lot of hope that eventually we will figure out a way to help me get back on my feet (literally and figuratively some days!J) and having more good days than bad.

I guess you could say that not getting my hopes up is a sort of safety net. In order to live my life with a positive attitude and to hold onto hope for a more “normal” life, I can’t get my hopes up about each of the individual treatments my doctors give me. However, as one doctor liked to remind me, attitude does make a difference, so it’s important to have hope. This is why I make a point to stay positive and have hope that we will find the right treatment eventually! One of these days a doctor is going to choose the right treatment, and when he does, I am going to be like a kid on Christmas morning that finally did get a puppy!

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Here’s a puppy visual for you 🙂 He is a great therapy and gives me hope!

Because I don’t get my hopes up every time and therefore don’t get let down as easily, I am able to keep hoping every day for a better tomorrow. I hope for days with less pain. I hope for days with move activity and less napping. (Yes, I want to spend less time in bed!) I hope for times where I can eat more and expand my “safe foods.” I am hopeful that I will go back to school and get my degree(s). I am hopeful for a future that holds a more “normal” lifestyle and one that that will include fewer doctors’ appointments and more time with friends, a job that I love, and health for my family and for myself. And I hope that one day there is a cure for gastroparesis, dysautonomia, EDS, and all of the other chronic illnesses that affect me and so many other people everyday.

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Laughter, loved ones, and pretty dresses

There’s a difference between getting my hopes up and being hopeful, and I have found the balance that works for me. Albert Einstein once said, “Learn from yesterday, live for today, hope for tomorrow.” I’ve learned that living one day at a time is the way to go, but hoping for a better tomorrow never hurts.

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.