Update: Cardiologist Appt. 12/18

You would think that I would get used to and comfortable with going to appointments. I actually freak out before every appointment, I don't know why but they terrify me. I think it has something to do with being asked questions about my symptoms and how often they happen and which ones happen. These doctors don't understand how hard it is for me to answer these questions about my daily life with my symptoms and my POTS. There is no routine with them, they are always so random. It is hard to explain to someone what you have to go through and deal with everyday. Especially because it is becoming a part of my life now. They always ask if it is getting better and it never is. Sure, I have another medication that is working on controlling my symptoms for those three hours that it lasts. Then I take another pill if needed. But I still will get flare-ups out of the blue, even when I am feeling really good. And these pills only control my heart rate and blood pressure and those are not my only symptoms. Today's appointment went great, I guess. I don't really know how I feel about it...yet. But my cardiologist is going to put me on a heart monitor again except this time it is for two weeks. He is doing this because I have been having these weird unusually flare-ups and palpitations that are not like more "normal" ones that I get. It is unusually because I am sitting down and get really lightheaded, and have a weird feeling in my chest. I have a sinus tachycardia arrhythmia when my heart rate is up which is "normal" but it is just fast (tachycardia). So he wants to see if these out of the normal flare-ups are my sinus tachycardia arrhythmia or if it is something else. My appointment to get my monthly blood work and to get my heart monitor is the first week in January. He told me to enjoy my break and that I should be wearing it when my life is back to "normal" routine. I think one of the best things that came out of this appointment was the fact that he told me that I didn't really go through a deconditioning phase. He told me that I adapted really well to this "new lifestyle." or whatever else you would call it. I am glad he said that because it gives me some reassurance that I am doing something right. I always want to be doing something right. It is the human thing to want but we usually tend to fuck things up, since we are humans. There is a brief update about what is currently going on with me. I hope you all have a Merry Christmas and Happy New Year if I don't see you!!

The Meaning of Being Diagnosed

In all reality a diagnosis does not change a thing. The only thing it gives you is a name and explanation for what is going on with your body. It also gives you treatment options. When I was diagnosed I felt so relieved because I finally had a name. I could finally tell people what was going on with me. I could give them that name and they would believe me.  I could tell them all of the frustration, pain, anxiety, and symptoms that I was dealing with in my life; without sounding so crazy. I also felt a a huge weight lifted of off my shoulders, it didn't last long. I had it because I didn't feel crazy anymore. The more I learned about what POTS was exactly, I thought back to symptoms and what I didn't know were flare-ups at the time; it all finally seemed to make sense to me. I say it didn't last long because as soon as I learned more about POTS and was recognizing my triggers, symptoms, and hearing horror stories of others experiences with this syndrome; I felt that weight back on my shoulders. Especially with the labyrinth of finding the right treatment for me. It was all so much. Having to explain what exactly POTS is became harder and harder to do. I feel like everyday I learn another symptom, treatment, med, or trigger. Then when both of my cardiologist told me that the medical profession still doesn't exactly know what they are dealing with, was hard to hear. It is still hard to live with everyday even though I have a name and am on some meds. All of this doesn't mean that I will get better. Some may believe that they can grow out of having POTS but I don't see how this can happen with me. But that is ok, because having this has brought me closer to many people in my life; friends, family, and even strangers. I am not sad, I am not angry. I am not saying that there are days when I don't feel that way about my POTS. But overall that is not how I feel at all. I am just being honest with myself for once. Sometimes I trick myself into lying and doing things that my body can no longer take. I realize that, and so I need to be honest with myself before I am to others. The reason I don't believe that MY POTS won't get better is because I never went into a major deconditioning process after I was diagnosed. I couldn't because if I had done that, I knew deep down that I wouldn't be able to get myself back up. And if you know me, I am but not always have been eager to learn and to live life to my fullest. That is why I try not to let this get the best of me. That is why I am saying this is just a diagnosis. My POTS affected me almost four years before I got a name for it.

Brief Discussion: Social Media and Chronic Illnesses

I don't try to always post about my illness on social media. But I feel the need to have to sometimes because I need to spread awareness of my illness. I also need to start the conversation that "it is OK to talk about your chronic illnesses when you need to." I don't know why this topic is so hard for people to talk about. I can understand that under certain circumstances that it can be. But you need to find someone you can trust. I am more than willing to to talk to someone about mine and listen to someone else about theirs. I don't try to get attention with bringing it up on social media. But it is important for people to know that chronic illness affects me everyday of my life. Seriously. If you have a chronic illness you know. It affects every aspect of my life and there is no changing that. I want to share how thankful I am for having Midodrine prescribed to me, it is working magic on me. If I wasn't on this drug, I would have passed out more, missed class more, and have turned in more late homework. The reason I am posting this right now, is because I HAD to take it today. If I hadn't taken it, I would have missed my class and still feel miserable in my bed. I only take this drug when I am on the midst of a flare-up. My heart rate got to 130bpm while just standing and when I sat down it stayed at around 113-105bpm and I felt terrible and it only takes about five minutes or so for it to kick in. This is the usual morning routine that I have to go through. Some mornings, like this morning, are just worse than others. So, yes, I am very thankful for this drug. Even though some of the side effects are not so fun. It is all worth it.

What It's Really Like To Be Chronically Ill - By: Lauren Ann

"Society’s recent obsession with cancer stories and movies like The Fault in Our Stars made me realize that the average person doesn’t know what it’s really like to be sick. Chronically sick. What it’s like to wake up every morning and know you’re never going to get better. No amount of medicine, doctors, surgeries, and procedures can fix you.

Being sick isn’t as glamorous as they make it out to be in the movies. And unlike cancer perks, there are no “chronic illness perks.” Except maybe those really good lollipops at the doctor’s office. Those are definitely a perk.I think the reason why people today love to hear about cancer stories is because they are just that. They are stories. They have a beginning, middle, and an end. While that end may not be a happy one, people are satisfied with closure. But my story doesn’t have an end. And people don’t seem to like stories without an ending.

The worst part about being chronically sick isn’t the physical pain, it’s the emotional pain that goes along with it. You reach a point where you can’t hold back the tears any longer and suddenly you’re breaking down in the middle of a doctor’s office. You think you can escape the emotional torture; your disease is purely physical, right?

The worst part is that there is no escape. There is no light at the end of the tunnel. There is no happy ending. There is no way to make the incurable go away. We learn to tolerate the physical pain. You have to. But it’s the overwhelming emotional burden that makes you feel like someone is holding your head down in the water. You can fight it, but you can never overcome that crushing feeling. How are you supposed to get rid of an emotional suffocation when the source of it is never going to go away?

Being sick is being stuck in the eternal clutch of the unknown. Any day anything could go wrong, or at least more wrong than it already has. It’s so hard not to feel anxious or depressed or completely lost when all that lies ahead is a giant question mark. You rarely seem to get answers when you are sick. And when you do, they’re often the answers you wish you hadn’t heard any way.

There’s one thing every single sick person wishes for, but rarely gets. Hope. Hope that one day things will get better. Hope that there will finally be a day when your pain is a zero on that silly little scale. Hope that one day you’ll get a glimpse of normal.

I know technically being sick means my genes suck or my body just plain hates me, but somehow being sick has made me better. I may be biased, but I think that sick people — especially young sick people — are some of the best people you will ever meet. Now don’t get me wrong, healthy people are great too. But when you’re sick, you understand things that other people might take for granted.

You learn to love every good second, every good minute, of any of those few good days you might have. You don’t fear death because you’ve already stared it straight in the face quite a few times. You know it’s not important to dwell on the little things. You have more important things to worry about.

So as many times as I’ve wished to be normal for even just a day, I’ve appreciated my life, both the good and the bad, so much more as a chronically ill young person that I ever could have as a regular teenager.

Being sick makes you strong. Being sick makes you weak. Being sick gives you insight and knowledge about life as it eats away at your own. Being sick is the greatest blessing in disguise. It is so much more than just having an illness. It’s having your entire life be taken out of your control, and fighting to get it back. And that fight will never end."

Shelby: I just want to note that I thought The Fault in Our Stars did a really great job at showing what it is like to be Chronically Ill not just the emotional and mental aspect but the physical pain and disruption as well. Although, the story  is a bit romanticized. Also like to mention that caner is and can be a chronic illness. If you have cancer, you know that there is no cure. You go into remission but it will always be with you. Other than those few points I wanted to make about this article, I agree with what this woman has to say. Please comment. I would love to hear what you think about this article. 

Finding Nirvana: I wasn't even looking

Everyone and I mean everyone, in my personal opinion, needs to find a Nirvana-like moment. It doesn't matter what your religious beliefs and practices are, you need to find it. It is almost the mere concept of how to be human. To be true to oneself. I don't mean this lightly, either. Everyone DOES need to find this. What do you mean Shelby? Why do we need to find it? You need to find your moment of peace, tranquility and ultimately Nirvana. I do not even practice Buddhism. After a random thought arose out of almost nowhere while I was thinking of one of the most amazing moments in my life. I felt the need to read up on what Nirvana is, exactly. What does it actually mean?  I learned that Buddhists try to find their perfect peace, perfect state of mind, to be free of anger. There are many different ways of achieving this Nirvana or ultimate peace and state of mind.

I know what you are thinking, you don't have to tell me. This doesn't sound like the Shelby I know at all. I know. But I am being so serious, right now. Have you had a moment or moments of being in the state of Nirvana? Have you felt so overly joyed for some reason? Whether it be an interaction with another person, exploring this vast world, or just having that one particular moment where everything is going so good?

Here is a list that I found that puts things into more of a perspective of what that moment may feel like: (The link to the website is at the bottom of this post)

• You are in a state of bliss and joy.
• You are in the flow and everything is working really well in your life.
• You are fulfilled, happy and content within yourself.
• You are a sea of calmness and peace.
• You feel healthy, energized and full of life.
• Your heart is overflowing with love, gratitude and appreciation.
• You have great relationships with everyone in your life.
• You feel that you have found your calling and you love what you are doing.
• You are making a contribution to the world.

It does not by any means have to be every single one of this things. But does it help put this in perspective? Now I would like to share my moment with you:

It was the summer of 2014, the year I graduated from high school. I was 17. I was dealing with health concerns that nobody even knew about. I didn't really even know about. It was always there in the back of my mind. I am still, today, surprised that I survived this trip that I had taken. But when I look back at it, I know it was because I forced myself to drink lots of water and take those disgusting salt tablets every night for about a week. I was in the middle of the mountains of Montana. I still don't even know, really, where I was. I just went with it. I was on a five day hiking trip with my Youth Group from my church. I was honestly dreading this trip. I was thinking of some many excuses not to go. But I did, I went, and I experienced my Nirvana. I know that isn't enough...The first two days of the actually hiking part of the trip, we were only going up hill. It was dreadful. But then came the layover day, the day where we choose what we want to do but it was already planned. We were going to peak a very tall mountain. I felt as though, I was forced to peak this mountain. I didn't want to but I did. As soon as I got up there and stood on that mountain, I experienced my Nirvana. As proof, I have videos, photos, and even a journal entry from later that day. Quote from my journal that day, "Just got down from Monument Mountain!! It was the happiest I have been in a really long time. It was so beautiful, amazing and breathtaking." I even had the feeling of being healthy and had energy almost the rest of the day. Here is another quote from my journal that day, "and climbing down was the best I have felt in a long time, I had the most energy." I actually went with a few others and peaked another smaller mountain as soon as we got down from the first one. What does that tell you? What does that mean? Everyday since that day, I have been dreaming and thinking about going back, not to do the whole trip but to go back to that moment of Nirvana.

This is why I say, anybody can find Nirvana and everybody should try to find their Nirvana. The catch is, that you don't know when it will really appear. And if you already have, please share. 

Here is a photo of me on the top of Monument Mountain! Here is a photo of me in my Nirvana state! 

Here is the link that I found the list from above on: 

http://www.arvinddevalia.com/blog/2010/09/14/how-to-get-to-your-nirvana-in-just-a-few-minutes/