Friday, July 11, 2014

Our Story: Then to Now

Many of you know I have some amazing friends. One of my best friends is Brynn she is 20 and lives just an hour away. While they all know who she is you probably don't know how I met Brynn. Most of you would assume we had a class together in high school, we met through friends and hung out at a party, or we played sports together. However that's not the case.
This is Brynn and I the first time we met!

Back in November 2012 when my health had completely declined I needed a feeding tube to get the nutrition my body needed to survive. I had reached out through support groups on Facebook, Instagram, emailing, and other such social networking sites. I had found some amazing friends and people who were able to help me cope and to help me feel like I was normal because they were just like me. One of those people specifically is a girl named Christine. Who to me has multiple names I call her Christ or Chrissy not much else. Just a little inside joke for those who know it.
This is Chrissy!

Chrissy and I instantly became best friends and she was slowly introducing me to many other people who are like me. Right after Christmas my brother was inpatient and I was just having a normal talk with Chrissy and she told me about this girl named Brynn who she was going to meet in Florida in a few weeks. So shortly after I typed in her username on Instagram. Brynn was inpatient at the time she had a similar situation as mine due to major allergens to the world basically just like me! So I followed Brynn and she followed me back.

I didn't notice anything weird and I started talking a little with Brynn. Shortly later Brynn was doing better and she was being released from he hospital! She posted a picture and the background looked similar to the hospital my brother and I go to. Tyler was released only days before Brynn. As you know there is that thingy on Instagram where you can tag your location. Brynn had tagged her location to the EXACT SAME hospital Tyler and I go to! I was freaking out! It was soooo cool to have met someone just like me and is just down the road! Brynn had just turned 18 so she was being kicked out of the children's hospital and having to replace it with the adult ward. I still didn't care.

From then on out we started talking always! I had surgery in January and was inpatient for some time and Brynn was inpatient during the same time! We had skyped several times and by the end of February 2013 we met for the first time ever in person. We went to the mall and just talked I knew we would be great friends! My brother was having surgery the next week and so was I! Tyler was having his surgery out of state and it was a major abdominal surgery. We went into build a bear and made him a bear. It was a green St. Patrick's Day bear.
Here is Tyler post surgery with his bear!

We continued talking over the internet and keeping in touch with our health and just being normal teenage girls who talk about music, concerts, tv, celebrities, and more! Once school was out I was finally able to hang out with Brynn when Tyler was inpatient. I spent the day at the hospital and the governor came to visit! Once Brynn's Mom was off work she picked me up and I stayed at her house for the night!

September 2013

My health was declining as July end and August was starting. August brought the first day back at a real school. I was starting tenth grade but only made it 9 days before I became too ill to function. I was admitted to the hospital on a late Tuesday night and from there we started my journey with two surgeries, one picc line placement, TPN started, j-tube feeds, IV medications, and plenty of scans and xrays along with a new diagnosis and plenty of questions. I finally left after a month of being in the hospital but before I left I got to spend some time with my best friend! Brynn came and we just laid in the hospital bed and talked, we travel upstairs to the playroom to play air hockey, and took plenty of selfies.

Brynn and I were finally able to meet up again in the very first week of January 2014 maybe it was December 2013 but who cares? I mean close enough right? We came up with the idea an awareness project we both have feeding tubes. and now at this point we both have a port a cath in our chest. Although that was not the case six months ago. So we got creative and added some beauty to our ugly diseases and show the world even different can be pretty! I'll share some photos here...

Let's just say we raised quite a bit of awareness that night from something that just turned into a small little project and a way for us to pass the time while being goofy and hanging out!

A few weeks later right before I left for my trip to Nationwide Children's Hospital I found tickets went on sale to see Hunter Hayes in concert in Asheville which is a little less than two hours away from Brynn's house. Tickets had gone on sale at 10AM and we finally cleared it with both our parents and bought tickets at 11:30AM. Let's just say we were pretty excited! We had to wait all the way unit April 19th. The night before Easter I met Brynn and her Mom at CVS by the hospital and we were off!

We took quite a few snapchats and it was also very cold! Quite unusual for a spring day in North Carolina but we made the best of it! Of course the sick kids got chairs to wait outside for hours because we just couldn't stand that long! We also made friends! Quite a few actually. Swiss was our favorite at least in my opinion. He works with Hunter and does a lot of his webisode stuff on youtube. Which we actually got to appear in! The song "Invisible" is a huge song for many because it talks about bullying, your feelings, and getting through tough times. Well obviously Brynn and I kinda are invisible girls. I mean having an invisible illness I don't know how more invisible we can get? We are in Webisode number 77 and we actually got to talk to Swiss a lot I think he really cared about what we were saying. I mean I don't see how anyone couldn't care? I mean I think we are pretty adorable if you ask me. Swiss took a photo with us too!

We said our goodbyes and it had been mentioned how we wanted to meet Hunter and raise some awareness and show our story. He said he'd try and just walked off and he came by and hour later saying he'd be right back. What does he come back with?
Meet and Great Passes!

Our faces light up! We were shocked and didn't expect this would happen at all! We made it through security and thankfully they did not give us too much of a hassle.We were just like um yeah we are kinda connected and they didn't seem like they wanted to deal with something like that so they passed us along. We got through and bought some tshirts and then to the bathroom to wash our hands and handle our tubes and what not and we went and waited in line to meet Hunter Hayes. We sat down on the floor and our tubes kinda got tangled together! Ooops chronic illness problems. We ended up attached to each other literally!

We finally got up there and he was completely taken back at first because we both had a good three wires and tubes sticking out of our bodies between meds, tpn, tube feeds, etc... We were like it's okay don't worry about it and he got over it. We told him we were sick and that's why he kept saying "God bless y'all" and it was quite funny. Over and over again bc he didn't have any words! We even told him about the Teens with Feeding Tubes 2014 Awareness video with how we used his song and he was thrilled we were able to do that. Five months later and the video has more than 5,000 views! He signed my backpack which I put TPN, Tube supplies, and other medical devices I may need. He signed Brynn's tshirt and made a video with us for our good friend Sarah! It was the most perfect night ever.
Brynn and I sat in the most perfect seats ever with an amazing view and when the song Invisible came on we belted the song out as loud as we could and just had the best night ever! It didn't mater that our bodies were failing us, that we live in the hospital more than we do at home, that we take countless medications, or that Brynn was just learning how to walk again. All that matter was we were standing there side by side singing as loud as we could like normal girls and just having the best night of our life! We finally made it home around three am and we just talked about the most amazing time we had together and we just couldn't get over it! I feel that this concert was the best thing Brynn and I have ever done together and it really made our relationship that much more special!

I went to her sister's graduation party this May and I got to meet two other chronic illness warriors in our area who I have talked to online but never physically met.
From left to right: (Michaela(me) Brynn Alex, Betsy and Moose the service dog!)

Shortly after Brynn was readmitted to the hospital and she has been there for six weeks at this point. All of this time has been spent in ICU. The doctors are unsure of what is going on and Brynn has been in horrible pain and dealing with episodes left and right that sometimes last for hours on end. She is waiting to be transferred to Boston where she can receive care by a specialist who understands her disease. Throughout this entire time Brynn has been fighting one of the hardest battles of her life and I will be there to support her throughout the entire time! Never wanting to leave her when visiting hours are up!

Both of us have been fighting hard to beat this stupid chronic illness we have and I am so happy I could fight alongside my best friend. I know we both absolutely hate being sick and we wouldn't wish it on anyone in this entire world but we are both very thankful for this disease! Without it I don't know where I would be without my best friend! I know for a fact she feels the same way!

Real friends stay by your side no matter what happens!

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