Invisible Illness Week Sept. 28 - Oct. 4

       I get weekly emails from an invisible illness website. A few weeks ago I got an email about invisible illness week saying that bloggers should answer a few questions. These questions are supposed to help spread some awareness or at least support invisible illness week.  So I answered the questions I could to best of my ability.

1.  One person who makes you get up and fight each day to have a life.
1. My family, and my close friends. Most importantly, myself. I know that sounds selfish, but how could I get out of bed every morning if I didn’t fight for myself and my future? So I get out of bed because I am looking forward to what the future holds. I am only 19 and going to college to become a paralegal and eventually, a lawyer. I am so excited for my future and the people I get to share it with!  
2.   What treatment or medication did you fight for?
1.   I first fought for a diagnosis. I fought for answers, for almost four years. During those four years, I felt crazy, hopeless, and was told that it isn’t that serious. So, in other words, it was all in my head. When I finally got the answer, then, I started fighting for a medication. I have tried two medications and the “non-medication” method within the six months of being diagnosed. I still haven’t found a solid treatment plan. But that is to be expected.
3.    How do you keep fighting to live when life wants to get you down?
1. When life gets me down, I talk to those who love me most. They always make me feel better. I look at old photos and videos because they remind me that it isn’t always bad. I eat chocolate and watch Netflix. Or if I need to power through the day, to work or go to class then I do, of course. I can’t let people know I am having a bad day. I can’t let people know that I am currently weak and feeling vulnerable. Unless I absolutely need to, if I did that every time I had a bad day then I wouldn't get anything accomplished.
4.   Why do you fight for awareness as an illness advocate (or just some man or woman who likes to make some noise)? 
1.  I fight for awareness because I didn’t know how terrible and how much people struggle with invisible chronic illnesses until I was diagnosed with one. I had no idea how the loneliness, sadness, loss, and how scared it is to have an invisible chronic illness. I most importantly fight for awareness because many people do not know what certain chronic illnesses are, even doctors and nurses. It is really hard to believe that, but it is true.
5.   What advice you would give someone recently diagnosed about how to choose what to fight   about and what to let go of?
1.    What you are feeling is totally normal. There are no wrong responses. I have been where you are before. And it sucks, it is going to be hard, but you will make it through this. Fight for answers, fight for treatment, not all doctors are going to know what to do. You will have days where you do not even feel like you are sick. But always be prepared to have that shitty day. Always, because it can come out of nowhere. Keep in mind that you are NOT alone. There are many others struggling with the same thing as you are. There are a lot of strong people out there putting up with the same crap you are, and you are strong. Always remember you are loved by so many, and have the support of so many. Don’t forget to lean on those who are close to you. Don’t forget about those who love you and are concerned about you. Do whatever you feel is right, take a deep breath, sit down when you need to, and do what you need to in order to survive the day. Don’t ignore the good days because tomorrow may be a bad one. But don’t put off the bad either, because you want to stay strong. This is not the end, this is the beginning… It is a beginning of a new normal.

Finding People I Can Count On! (What I learned from an ER visit...)

It is nights like last night where I feel my weakest but so loved. I had such a bad flare up last night I had to go to the emergency room. That is the first time that I have ever had to go to the ER for my POTS. I was surprisingly calm, which was great. It made the whole process so much easier. I am living alone this year, in a dorm. So that means that there are pros and cons to living alone and having this condition. Pros: privacy, being comfortable when not feeling good, not having to explain yourself, ect. (you get the picture). Con: if something serious happens or if you just need someone to be there to make sure you don't get worse...there isn't anybody. Because you are alone. That is the only con in this situation. And last night I experienced that con. But fortunately I have many friends and family that live around campus. The first person that picked up my phone call, is the lucky duck that gets to bring me to the ER! Since my flare up got worse during late hours of the day, not many people picked up right away. I think I called three people before my cousin picked up. I went by who lives the closest. But now I am just going to have my cousin be my 'go to guy.' He did such a great job! At first he was a little freaked out but, who wouldn't be? When we got to the ER he was such a great sport. You see, my cousin and I have never been that close and last night we just talked and talked. He was trying to understand my POTS and how it affects me. He never really understood what it was but, I am even trying to figure that out myself. Not only did we bond a little bit, but the entire time he was there I felt safe, calm, and thankful! While I was there, I figured I should text some of my friends and family about my new status. I text my closest friend Lexy and after I sent the first text, I realized something! Something great! I am at the U of M ER and she lives on the U of M campus!! And if anybody could make me feel better, it is her! She went to lengths to come and see me, I won't go into detail. But to put it simply, she is an amazing friend and I love her to death. I would do the same for her! The whole point of this post isn't because I want sympathy or anyone to feel bad for me, I already know how much it sucks. The whole point of this post is to reassure others that there are people who will be there for you, in the most unexpected ways and at the most unexpected times. No matter how much you feel alone, you will always have your family and your closest friends! You will always have those people that you CAN count on! And sometimes you are surprised by those you can count on, but sometimes it is good to be surprised.

Photo: the selfie is of my friend Lexy and I at the ER, but of course this is after I started to feel better.

Lupie Linda

Here is only one of her best quotes!! "There is something within your chronically ill body that is still fighting for you. With all you have been through you are still alive and breathing with infinite potential and worth. If you can't find peace with your body right now, it's okay, don't rush it. With time, you will find a better relationship with your body. Practice self-care and encourage others to do the same. Give yourself credit for how far you've traveled in your journey, and begin to take small steps towards peace with who you are and the body you have been give" -Lupie Linda #sotrue #dysautonomia #POTS