People do stupid things for a reason.

People do stupid things all of the time. They do them for certain reasons; unexplainable reasons. They usually don't plan to do them, it just sort of happens. They do something and then something stupid happens as  a result of it. This doesn't mean they are stupid. In fact, it means they tried. Stupid things are failures. We all learn from failures. We all learn from doing stupid things. Sometimes we do not and we need to explore our options because we did learn the whole lesson of that mistake. And we don't want to give up on ourselves. We don't want to give up and show people that indeed we were wrong and suffer the consequences.

I am obviously talking about myself and I am not going to share the specific instant. Because that isn't important. I have made the same mistake twice but it needed to happen in order for me to learn the full lesson. It doesn't make me stupid. It makes me a person who is willing to try something again to succeed. It makes me ambitious. It makes me human.

I don't really care what people have to say about it. If they know what I am talking about. That is fine. That is not the point of this. I don't care if you judge me either. You probably will because you are also human. I get it. 4

Questions I ask.

There are many questions that I ask myself. Some I share with others and some I keep to myself. I feel the need to keep the most important questions to myself. Most of my questions pertain to the future and involve fear. I assume this is a normal thing that everyone experiences about life in general. I am talking about my health and how it will affect and already has affected my life. One of the most common questions that I have is: When is my next flare-up? When will I miss class again? When will I need to go to the ER again? How long with this treatment work? What if I have a flare-up right now? What would I do? Who would I call, in this moment? It is the more paranoid side that comes out in me and I am not going to lie, it freaks me out a little bit. I guess, it is a good thing to be mentally prepared and somewhat emotionally prepared if I were starting to not feel good and ask questions that could help me think and try to control the situation. It has happened. I have had a flare-up out of the blue in a public place. I thought I was going to black-out. When I feel like this I also ask myself: Will I black-out if I stand up? Who would help me? What would I do after I wake on lying weak on the floor? Do I tell someone? Do I text someone for help? Instead I just try to wait it out. I just sit there and wait for my symptoms to go away. I breath and try not to think about it. That is hard. One of the hardest parts about dealing with a flare-up is telling people. Either in person or with the use of technology. I hate being like I had a flare-up and couldn't do anything or couldn't make it to class. Or I don't know what to do because I have brain fog and can't think clearly. I have had to tell professors in person that I have all of a sudden I am very ill and may or may not need to go to the ER, to get some saline into my dehydrated body. There are even days where I take my meds and I drink my water where I have flare-ups. Those days are the scariest. During and even after a day like that I am set back. I am terrified for my future.  I hate to say it but I loose a little bit of my hope and faith. There are no right answers and I don't know where life will take me with this illness, but that's ok. I didn't choose this and I can't change it, I'll take it. 

Cycle of thoughts.

This is hard to explain... I keep finding myself in these cycles of emotions over being ill. I will convince myself that I am fine and can get through the day but then I end up pushing myself a little too far. Then sometimes I will tell myself that I do need to slow down or that I should. I usually do but sometimes don't and then push myself to far. Even when I am having a good week or good day I push myself too far because I am actually, for once, feeling good. No matter what I tell myself I tend to bend and some days break my limits. Then I learn or say I learn and move on, just to do it. The. There are times when I think that I am going to just make a fool of myself and pass out or need to at least brace myself for the possibility. It usually doesn't happen. Sometimes it does. When it doesn't, I say to myself that I really am ok. But I am not because I could have enjoyed my time spent with someone or doing something and I didn't. I didn't fully enjoy my time because of the caution and worry that I put myself under. I can admit that it had to do with my stubbornness. I won't admit to myself and others that I am not ok. Because I do t like to hear that. I don't want to let others know that when I am with then that I am not fully enjoying my time because of my illness. I don't think a lot of these thoughts will change over the course of time. They haven't so far. But who knows our braindoes wonderous things. 

Moving Forward

I didn't realize that I had taken the next step and had made a big statement in this unexpected journey with my illness until someone pointed it out to me. It was there sitting on my wrist all along. It says that this is a part of who I am. It is my new medical alert bracelet that says on the front: Dysautonomia, POTS, Tachycardia, Give Saline. And on the back it says: my full name and birth date. I was just talking to him and he pointed at my bracelet and he is like, "Whats that?" I am said,  "it is my new medical alert bracelet, I still don't know what it means." Then that is when he told me how it is a good thing and it is a big statement that I am making. And I am said, "yeah, it makes me feel safe. Especially when the other day I thought I was going to keel over (black out) in class." He said, "You will just have to shake your wrist in class." Ha. It is great how people can find the humor in almost anything. Now that I have taken one step forward, I am a little curious to see what the next step will be.

Don't Underestimate Youth

I don't even care if nobody reads this because I felt the need to write it for my own sake. If someone does read it, then good. I would like that. There are points that need to be made and recorded. I can contradict myself, it doesn't matter, not really. Every one does that eventually. As I am learning, most of the great poets and politicians contradict themselves,it i s only human. This is a message for anybody who is older than I; do not underestimate youth. Just because I am younger than you doesn't  mean I have not experienced life, emotions, loss, revelation, clarity, life lessons learned, etc. We are all human. honestly, I don't think age has a lot to do with human experience and human emotion. If you don't understand or don't belief what I am saying then fine, that is your own opinion and this is mine. Just because I am young doesn't mean I can't write a kick-ass blog or kick-ass memoir about my courage and my vulnerability as a young adult. I HAVE experienced these things. I HAVE experienced clarity, just like everyone should. It doesn't mean everyone does. If I told you that I was writing a memoir and you say that I am "too young," too bad, I am still going to fucking do it! Thank you for reading this post, if you made it this far. Ha. Rant over... for now.

What to know if you love someone who has POTS:

Here is a great article that I found that helps explain a POTS patients thought process and how you can help them as a loved one:

By: S.E. Carson    Published: 1/12/16 

"Postural orthostatic tachycardia syndrome (POTS), a form of dysautonomia, is a chronic illness that affects more people than multiple sclerosis and Parkinson’s disease and causes quality of life analogous to congestive heart failure. Yet it is incredibly unknown and chronically misdiagnosed as anxiety or “all in the patient’s head.”

Here are some ways to help someone you love with POTS:

We feel a lot. A lot of the time we may be struggling with guilt, depression or other various stages of dysautonomia. We are constantly aware of how the dishes aren’t done, that we bailed on your invite again, and that — at least for the time being — it feels like the person we used to be is gone.

This doesn’t mean we can’t be, or aren’t, happy! We’re still the same person, just under far different circumstances. However, just because we look or sound or seem OK doesn’t mean we aren’t in pain or exhausted or didn’t just throw up in the bathroom because our blood pressure suddenly dropped dangerously low.

We are more than our illness. Talk to us about things we love and enjoy. Treat us as a person because we need to be seen as one. We aren’t breakable, but sometimes we aren’t entirely whole. And we need to be reminded we still are someone even with this illness.

Ask questions. “How does brain fog make you feel?” “What do I get you if you faint?” “What can I do to help?” It shows us you care, that you want to learn, and it validates what we’re feeling. This automatically puts you far ahead of 90 percent of the doctors we come into contact with.

Help us find something we love that we can do despite the debilitating fatigue. When I was extremely ill, I was too tired to concentrate on books or make it through entire movies. But I rekindled a love for photography (even though my pictures consisted of the four corners of my bedroom for two years) and it kept me going. Knitting, drawing, coloring — anything that can show us we are still human and can still contribute to ourselves and the world.

Use your judgment to help encourage us and remind us to take it easy on ourselves. Point out the little things we’ve accomplished because seeing progress helps us keep fighting (such as, “I don’t blame you for being tired, you [walked up the stairs on your own today]! Sounds like it’s time for some well-deserved rest.”).

Help get us outside or open up a window. Not when it’s sweltering hot or freezing, of course. And we may only be able to handle it for a few minutes, but feeling the sun on our faces and fresh air in our lungs can be some of the best medicine.

Realize the things that make us happy (like being outside for a little bit) can also make us sad because they remind us of our limitations. Be cognizant of this.

We need to learn to listen to our bodies. This can be especially hard for those of us who have spent our lives pushing beyond our limits and never slowing down. Remind us that we aren’t weak, that it is OK to take care of ourselves and put our needs in front of other things. This also includes letting go of emotions, thoughts, etc. that do not serve us. I have found a lot of people with POTS to be extremely sensitive people. We have to learn new ways to manage stress and our own active minds. Talk this through with us. Come up with a game plan together. Be our teammate, not our keeper.

You won’t always know exactly what to say or what we need to hear. That’s OK, just tell us that. Even though it can be difficult for us, we must communicate our needs to you and learn to ask for help as well. Plus, that’s much easier than someone just disappearing on us or pretending nothing is going on.

Love us. We feel bad about all the sh*t we put you through. Remind us that you are your own person and that you are choosing to stay with us.

Tell us it’s OK. It’s OK to be tired. It’s OK the dishes aren’t done. It’s OK you didn’t get to vacuuming. It’s all OK because no matter how strong we are — mentally and physically — or how long we’ve been managing with POTS, it still throws us for a loop. We still beat ourselves up. Remind us we don’t have to be strong all the time, that we aren’t lazy and that it’s OK to be sad as long as we eventually get back up and keep fighting.

And with your help, we will."

I say: I am fine.

This is what it looks like to live with a Chronic Illness. An Invisible one. I try to hide it. Then, I realize there is no use because why try to hide what I struggle with everyday of my life. It is only a temporary heart monitor but it is a way to spread awareness and show that I still am looking for answers and treatment. I say: I am fine.#fightforacure #dysautonomia

Unexpected Day!

It has been an interesting day. I have found out through the last year that unexpected days can be the most healing of them all. I don't get many days like this. I got to hang out with my friends from high school! I was not expecting that. I got to say goodbye to one of them who is leaving for Denmark for six months...I am going to miss her so much. I also just found out that she is going to be gone for six instead of four; that was devastating. I cried a little bit, not going to lie. Then I took the train from downtown Saint Paul to the U of M Heart Center to get a wireless heart monitor attached to my chest and blood drawn. I was so relieved to have found out that I have a wireless monitor that I only have to wear for two weeks instead of a month. That was unexpected. After my blood draw I had to go up two flights of escalators and had a moment. A moment of realization, of how alone I am. Not in a bad way but an in-powering way, I did it, all by myself. I am, as you know on the verge of adulthood (19) and I was alone; going to and from my appointments running into no complications. Staying relaxed in complicated situations, being comfortable with taking public transportation and even having full conversations with strangers on the train. Interesting people. The most unexpected thing that happened today was a full conversation on the train with this friendly stranger. I sat down and this man stayed standing because he didn't want to make me feel uncomfortable by sitting right next to me. I scooted over and told him to sit down. I was like "this is nice and cozy on this cold day." We talked and I found out that he is from New York City, just moved to MN to study diagnostics of ovarian cancer. I found that interesting because earlier today I was reading one of my Professors memoir on her cancer. I told him about this and he also found her story interesting. He also asked me what I am studying; I am studying legal studies. He said that he thinks I will be good at any future job I get just because I am "open" at having conversations and easy to talk to. So that made my night. Just a simple conversation with a nice stranger. When I arrived on campus, I didn't think my day could get better. I had a great conversation with one of my Professors who is also my adviser. I was reminded as to why I chose him as my adviser. I was reminded about the care, attention, understanding, listening, and mentoring that he is able to give me. I do have other Professors on campus that I can really talk to, he is one of the few. I am glad to have such an unexpected and exciting day. Thanks to all who made my day so great! Especially, since I have been having an overwhelming and stressful past few months.