Monday, October 26, 2015

Two for One

I have been a bad blogger. I have two topics to talk about today and I have been meaning to talk about them for a few weeks now. First, I want to talk about October. Most of you know that October is Breast Cancer Awareness Month. October also happens to be Dysautonomia/POTS Awareness Month. The terms are pretty interchangeable these days. I was diagnosed with POTS almost a year ago. Just like a couple months ago when I talked about Gastroparesis Awareness Month, this is a topic that just needs to be brought to light. People have no idea what POTS is. And even once I have explained it, people just kind of nod their head and go about their day. Here is a link to Dysautonomia International's website where POTS is explained in a pretty detailed manner: http://www.dysautonomiainternational.org/page.php?ID=30. My POTS is combatted through a regimen that includes: 30 minutes of cardio a day, drinking a gallon of water a day, eating as much salt as possible, taking a beta blocker, sleeping 8.5-9.5 hours a night, and doing exercises in the morning to help get the blood flowing in my extremities. I am a bad POTSie and do not do all of these every day, although I know I should. But, that is not what this blog post is about. This is about getting the word out and getting people familiar with the terms POTS and Dysautonomia. Anyone with an invisible illness can tell you that it is very difficult when 1) people cannot see your disease or illness on the outside and 2) people have never heard of your disease or illness. A lot of people and sometimes even medical professionals (yes, this has happened to me) think that you are making everything up or that it is all in you head. The one thing that I ask you today is to click on the link above and read about POTS and if you want to be bold, share this blog post on your own Facebook so that it can reach even more people.
My second topic today is a little more exciting! About two weeks ago, Lance and I went to the hospital to have our blood drawn and shipped to Mayo. We (well, my mom) had some difficulties finding a hospital or doctor's office that would draw our blood and give it back to us so that we could send it to Mayo. My mom wound up finding out that the Baton Rouge General on Bluebonnet would draw our blood and ship it to Mayo for us! It was great news! We had some issues at check-in but the women that my mom talked to that day found us and everything else went off without a hitch! I have even attached a picture for your viewing enjoyment. Just a few days ago, we received word from Mayo that they have our blood and are about to begin testing!
Until next time,
    A :)

Tuesday, September 29, 2015

Invisible Illness Awareness Week

I just found out that this week is Invisible Illness Awareness Week. An invisible illness is typically defined as an illness that you can't see from the outside. But it can also be defined as an illness that doctors have a hard time diagnosing and treating. In my case, I fall into both of these definitions. Just looking at me you would never know that a whole lot of my insides don't work the way that they were designed to. It took over 6 months (which really isn't that long) to diagnose my gastroparesis and another 16 months to figure out how to treat it. POTS is a little bit different. Once my brother was diagnosed we kind of put two and two together by ourselves but we didn't have another doctors appointment for 8 months or so. I was quickly diagnosed there and everything was set into motion pretty quickly.
Today I want to talk about why I fight to get up every morning. I fight for myself. I fight for my life because if I don't who will? (yes, I know a lot of my family and friends would but that is not the point here) Who would want to fight for someone who doesn't believe in and fight for themselves? I know that my life will never be normal. But who really wants to be normal anyways? I do fight for the life I have imagined, for example going to college and graduating from college. Don't get me wrong, the life I imagined is very different from how my life is going but that is completely okay. I am rolling with the punches that life throws my way. That is all I can do. We never know what is going to happen to us tomorrow or even in the next hour. That is why we have to live every moment to the best of our abilities. And I try to do that every single day.
This week is about awareness. Please share this post with someone in your life whether they have an invisible illness or not. I am always here to talk if anyone wants to know my story or if someone was recently diagnosed and just needs someone to talk things through with. There is a quote that speaks volumes about invisible illnesses although I'm sure it wasn't coined to be. I know I am going to mess it up but it is along the lines of "Be kind to everyone because you never know what someone else is going through."

Until next time,
    A :)

Sunday, September 27, 2015

New News!

I finally have some news in regards to my medical life and I couldn't be more excited! I have said it before and I am sure most of you have heard me say it in person but I have always wanted to get genetically tested. In the last few weeks, my family and I have been talking about going back to the Mayo Clinic for our annual appointment because you can book up to 3 months out. I had expressed to my mom that I really wanted to be genetically tested before/when we are there for our next appointment. She talked to my doctor's nurse and somehow it got passed along because a few days ago I got a message from my doctor. The message said something along the lines of a mail out kit had been sent to be completed before my appointment in December or January. It was literally one sentence and I had no clue what it was talking about. This afternoon I went home to have dinner with my family and I noticed a letter from the Mayo Clinic so I asked my mom about the message I got and she said that we are going through with the genetic testing. I am like a kid on Christmas! All I know is that it is a blood test that I will get done here in Baton Rouge and we will send all of the results to Minnesota. I really want a whole genome work up but I don't know exactly what they are testing for. All I know is that this is a step in the right direction.
On another note, I have had a few bad days in the last few weeks. It is all a result of my doing or should I say lack of doing. I haven't been exercising as much as I should and I occasionally don't drink/eat the right things. I haven't been getting the sleep I need to. BUT, I am restarting right now. I need everyone's help to stay on track. I give ya'll permission to ask me how I am doing any time you see me. Ask me if I have exercised that day or when I plan on doing it. Thanks in advance for the support!
Unit next time,
   A :)

Monday, August 31, 2015

August: Gastroparesis Awareness Month

Hey y'all! I know it has been a while since I blogged but I'm back! Nothing super exciting has happened in the last few months concerning my health, which is a very good thing! I have been off social media for the last couple of months because I was a Recruitment Counselor (AKA Gamma Chi) for Recruitment (Rush) at LSU. But again, I'm back! 
I wanted to dedicate this post to Gastroparesis Awareness because August is Gastroparesis Awareness Month (especially since it is the last day of August). That sentence was redundant, I know, I'm sorry. I feel like I have told my story many times so I am going to tell it a little different this time. Gastroparesis basically took my life from me during my sophomore, junior, and senior years of high school. I did my best to make it to volleyball practices, club meetings, friends' birthday parties, but some days I didn't want to get off the couch or out of my bed. This seems horrible and at that time in my life it was. Today, years later, I realize how lucky I was back then. I was still able to eat, I went to school, I had family, friends, doctors, and teachers there with me every step of the way. Gastroparesis is a disease that can literally take someone's life. There are people suffering from gastroparesis who are in the hospital almost every day, who have pace makers and feeding tubes. And they still are not improving. They are still suffering from a disease that so many people have never heard of. I am so lucky to have found a treatment that works for my gastroparesis. My pacemaker and a couple of medications make my gastroparesis manageable. I have my life back but my fight still continues. Today and everyday I fight not only for my life but I fight for those whose fight has been taken away by gastroparesis. 
This debilitating disease has no cure and most people diagnosed never know the cause (myself included). Please read the picture below to learn the signs and symptoms of gastroparesis. 
Also please enjoy these ecards about chronic illness. They made my day. 


Until next time, 
       A :)

Saturday, June 13, 2015

Doctor Disney

It's been about a week since we have been back from Florida. Summer school started this week and it has been hectic! I am so glad I only have 6 weeks left! But anyways back to Florida! On Wednesday afternoon, we drove about half way to Gainesville and drove the rest of the way on Thursday morning before my appointment. We met with my doctor and he said that everything was looking great! All of my gastroparesis symptoms are at 0s on a scale of 0-5. I will go back next summer for another check-up. Even though I am 21 and an adult, I will see my pediatric surgeon for as long as I have my pacemaker. After that we toured Florida's campus. We basically had a photoshoot around campus. We were able to go in The Swamp (their football stadium) and their Theta house. It was a great way to end our trip to Shands! With most Shands trips, there is also a Disney visit. So Thursday afternoon we headed for Orlando!
Disney is always a magical experience. (See what I did there?) Friday we went on the Backstage Magic tour that took us to all of the parks and we got to see a lot of different things behind the scenes. I found out that I know a lot more Disney Trivia than I thought I did. It is kind of ridiculous. On Saturday we went to Magic Kingdom. Pin trading at every corner. We traded with some Cast Members working for Disney Vacation Club. They sucked us in and we decided to go to one of their presentations. I mean we got free ice cream and a three extra fastpasses for the day. We decided that it would be a good idea since they would take us back stage in Magic Kingdom and drive us to the presentation.  I started crying because I love Disney so much. I told them to take my money because I wanted to join DVC, now. After the presentation, they said they could drive us wherever we wanted to go on Disney property. We decided since we have free fast passes we might as well go to Hollywood Studios (minus the Hat, tear) to ride Tower of Terror and Rockin' Rollercoaster. We were roaming around Hollywood Studios after the rides and found Cinderella's Carriage. Of course I had to take a picture with it! After that we headed back to the Magic Kingdom to finish off the night. We drove home all day Sunday to get back just in time to see the LSU baseball team win their game and advance to the College World Series. All in all, it was a great trip: awesome news from the doctor and an amazing trip to Disney World.
Until next time,
A :)

Tuesday, June 2, 2015

Two Months

I can't believe it has been two months since I last blogged. Well, actually I can. The last month of school was crazy busy and there was a lot going on. There are few things that have happened in last two months that I need to update y'all on!
1. I turned 21 at the end of April. No, I did not go get crazy drunk. I did however, spend the afternoon in New Orleans with my parents eating until our hearts were content. Most of y'all know the way to my heart is through my stomach. We stopped by Hansen's to get some snoballs. Then headed over to Commander's Palace and had a three course meal. Then headed to Harrah's to try my hand at gambling. Let's just say I'm not very good. We still weren't full after that so we went to Cafe Du Monde for some beignets. It might not have been a typical or average 21st birthday but I couldn't have imagined anything better!
2. I finished this semester with a 3.8 GPA! My only B was in Physics and I am so happy that I pulled out a B! I made it through this semester without any huge medical emergencies. Thank goodness! I did have some days where I struggled with getting all of my POTS things done but I made it through and that's all that matters.
3. Tomorrow, my parents and I are leaving to go to Gainesville for my three year check up at Shands on Thursday afternoon. Everything should be fine but we still need to check on things pace maker wise (is it still working properly, how much battery life does it have left, etc). Since we are going to Gainesville, we obviously have to make a trip to Disney World. We are only going to be there for two days, but hey, two is better than none. Hopefully, I will update y'all on my pace maker status within the next week!
Until next time,
A :)

P.S. I had change my banner to a "21 year old" Ahhh

Wednesday, April 1, 2015

Lucky Me...No Sarcasm Intended

Most people would consider me to be pretty unlucky when it comes to medical issues. And as of a few weeks ago, I probably would have agreed with you. Not long ago, I joined a few POTS facebook pages/groups. I have only read a handful of posts but when it comes to POTS, I seem to be living the dream. I get out of bed every morning and don't even think about it. Most of these people lay in bed all day. Most have personal pulse ox, blood pressure, and heart rate/pulse machines in their rooms. The age range is across the board. Some women are struggling with fertility (a problem I hope I don't encounter myself one day...far away) and others struggle with attending high school and having to sit and stand at certain times during the day. Someone recently posted and asked everyone to comment what "POTS is" to them. I only read through about 20 comments but after reading those, I knew that POTS is something I am conquering. I wish I could project across the sky how thankful I am for my life and how well I am doing so that people knew. I am thankful for all of the extra things I have to do for POTS because I have the ability to do them. I actively try not to complain but I'm not perfect and catch myself complaining more than I would like to admit. God has blessed me in more ways that I can say or even think of and for that I am eternally grateful. 
Until next time, 
A :) 

P.S. Happy Easter if I don't post before then (let's be honest, I probably won't haha)