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/

Having Thanks all the Time.

Yes it is, Thanksgiving day! I hope everyone is enjoying it, sometimes it can be hard to enjoy a holiday. We miss loved ones, don't get along with others, and it is hard to forget our worries and put that beautiful smile on our face. But we make ourselves go; talk story, tell them that everything is fine, and eat the big meal. This is usually what happened when I was younger but families grow closer as we grow older. Each individual member of the family grows a little bit closer in the year that goes by. We grow closer because we go through heartache, health crisis, break-ups, fights, birthdays, ect. It gets better, it gets easier to open up. We will always be honest, at least we think we will be. But we try and that is all that matters. I am very thankful for my family. They have been very supportive through my diagnosis and massive change in my life. My friends too! I have made new friends in college and they have also been supportive and accepting of me and my weird qualities. My friends that I have had for what seems like forever have been here for me through thick and thin. I love them all so much. And I can't forget to mention my high school teachers and my college professors. They have also helped me out and have had patience and understanding with everything that has been going on with me. I can't imagine not having them to talk to when I am feeling overwhelmed and stressed with school and non-school things. I would also like to thank everyone else in my life that have been there for me through all of my crazy problems. Lastly, I would like to mention that I am thankful for all of the medical devices that have helped me and everyone get diagnosed to live a longer and fuller life.

Being Diverse

Having any kind of illness makes you diverse from healthy people. When people think and talk about diverse issues they usually leave disability and illness out of the picture. They focus on race, ethnics, class, and gender. I know 'they' is a broad term; by using 'they' I am referring to the majority of people. When I think of diversity and how it effects people; I think of everything that makes us unique. I only started acknowledging that having disability or illness is also a category of being diverse. Some categories are more relevant in the media and have greater obstacles to overcome in the world but they are all equally categories under diversity. I have only identified myself as a white woman, never an ill white woman, at least up until this summer. Whenever someone assumes I am healthy or want to hang out with me and have any ind of relationship with me, I will tell them I am a sick girl. I have to 'warn them' about what they are getting themselves into. It is only fair. I would want to know if someone was ill. I wouldn't reject them, obviously, I mean I started a Chronic Illness organization on my college campus last month. I never even thought of having a disability or illness as a diverse issue until this year. I have been hearing more and more diverse issues around the world. I am posting this because it is important for people to know that there is a forgotten minority out there and it is people with disabilities and chronic illness.

'Human' by: Christina Perri

This is one of my favorite songs that I totally relate to with my chronic illness and just being human. Go ahead and watch it is very empowering. 

Learning to Adapt

I was in the ER again a few days ago; on Sunday (11/1). I had another bad flare-up. I was very dehydrated which caused ten hours of tachycardia, dizziness, puking, body tremors..ect. I want to be honest. Saturday was Halloween and I was hanging out with my friends and I had a few alcoholic beverages. The only thing I regret from that night was not drinking enough water in between drinks. I am usually good at doing that but I was having so much fun that I had totally forgotten to take care of myself. It has been hard for me not to be able to do certain things that my friends do. I know you probably will not understand were I am coming from. I am not saying I like drinking all of the time. I just like doing it every once and awhile. I want to make one thing straight; I do not tell people that I was in the ER to get pity, sympathy, or attention. I don't want to get attention because I have an illness, that is the last thing I want. I tell people so they hear it from me and not someone else and so they know what is going on. With the people I did tell that I got dehydrated because I was drinking and didn't take good care of myself; I know they are disappointed in me, not happy with me,  and hope that I think it was worth it. That is fine. I know they still love me. I am not disappointed in myself at first I was a little ashamed but not anymore. I had a great friend that talked it through with me. She said, that I am still adapting and that I am still figuring out my new normal. She said, "what is happening to you is a huge change and doesn't make any sense. You have to give yourself a break and time. Just do your best." So yeah, I took those words with great meaning. Because I was being really hard on myself. I am only human. I make mistakes. Everybody needs to understand that I have only been diagnosed with this chronic illness for almost 7 months now; I don't have even close to everything figured out. I learned this week that everyday will be a day of me adapting differently to my illness and that is something I have to live with for the rest of my life because I have no choice. Last week I was binge watching (Netflix) season 2 of 'Chasing Life,' it is about a young women who was has been diagnosed with Leukemia and the show does a good job of showing how a chronic illness can change your life and the relationships you have. The main character who has Leukemia, April Carver says, "Everything changes and all you can do is adapt."

Update: Cardiologist Appt. 10/23

It is always reassuring when a doctor says to you, "the medical professionals don't really know what POTS is," or "doctors don't really know what this is." I got that at my latest cardiologist appointment on Friday. Although those things were said that day; it was probably one of the best appointments I have had. It wasn't the best because they reassured me and gave me a another med to control my symptoms better. It was the best because the doctors listened to me and they were honest with me about my condition. I know they had some cancellations from earlier that day but it gave me more time for my doctors to actually sit down and have a conversation with me about my POTS. The first doctor actually said to me that he couldn't imagine having POTS and going to college because college is hard enough as it is. I think that was the first time I have ever gotten empathy from a doctor about my POTS. I have gotten sympathy from doctors but never empathy. I was also put on another medication, it was the same medication that I was taking for two months this summer, Midodrine. My internal doctor told me not to take Midodrine while taking Fludrocortisone but my cardiologist said that it would be fine. My internal doctor told me that because he is a third year med student and is following under an actual internal doctor. He is also not that familiar with POTS. So I am going to be seeing my cardiologist for my POTS and my internal doctor for everything else. I have more trust in my cardiologist because he has been practicing medicine a lot longer and he has a greater understanding of POTS. So now I am taking one pill of Fludrocortisone every morning and half a pill of Midodrine as needed every three to four hours. I can take up to four Midodrine a day if needed. So far I have only needed to take two a day. I have been feeling pretty great. The Fludrocortisone (steroid) is to prevent symptoms from happening by having my body retain salt. The Midodrine is to help control my symptoms when I get them, it constricts my blood vessels and raises my blood pressure. My cardiologist still seems a little worried about if I have an undetected arrhythmia, He doesn't say actually that he is concerned but he brings it up every appointment. He keeps bringing up how I may need to have the smallest heart monitor inserted in my chest, right above my heart. I am tempted to just get it and wear it for a few years, just in case I do have one. So I guess I will have to wait and see what happens. If I keep taking care of my self, taking my meds, and if that works then maybe I won't need to have it done. I thought I would update everyone on what is going on and show people that, yes, sometimes a doctor can be empathetic.

"Mourning the Loss of a Life Once Had"

It has been a rough couple of weeks, today especially. I found this one on my Facebook Support Group: http://www.painnewsnetwork.org/stories/2015/10/20/mourning-the-loss-of-a-life-once-had

Spoon Theory

It has been an off week and a half for me. Last Tuesday, my POTS decided to kick me in the ass, I was in bed by 4 p.m. and stayed there for the rest of the night. So while I was in bed, I was thinking to myself what did I do wrong today? I drank enough water, I ate my meals, I didn't over exercise... I thought that maybe I just did too much the day before that I had used some of Tuesday's spoons for Monday. Then, I realized that I had never actually read the original spoon theory story, I only knew what it was because of other blogs and vlogs. So I decided to look it up and found it helpful. I hope you find it helpful as well. It doesn't apply to everyone with a chronic illness but it applies to some. Also, if it doesn't apply to you or you don't have a chronic illness it is helpful to understand those with these types of chronic illnesses. So here it is: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

October is Dysautonomia Awareness Month

This month is Dysautonomia Awareness month, POTS is a form of Dysautonomia. To explain this photo- I had to wear a holter/heart rate monitor for the entire month of February this year to give my cardiologist as much data as I could about my symptoms. This way they could pinpoint a diagnosis. Unfortunately, it didn't help as much as they thought it would but it ruled a few things out in the diagnosis process. I took this photo to show my close friends and family what it looked like and also the discomfort of wearing it. So I thought this would be the perfect photo to spread awareness, it gets your attention. Women are 5 times more likely to develop a Dysautonomia Disorder. There is no cure for Dysautonomia. Most importantly it is not rare, it is just unknown. Please share and help spread Dysautonomia awareness.

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

Some days...I feel like a burden

Some days, like today, I forget how bad and debilitating my symptoms can really get. I have had some fairly good days this past month, until today. I was sort of brain foggy all day and just mentally out of it. I went to a football game. At half-time, I went to the bathroom and got really dizzy. And then my night just escalated. By the time I get home. I am so dizzy and weak. It is hard for me to even stand up because it feels like my legs are going to give out. My whole body is shaky because my nervous system is freaking out. I can't relax and when I have to get up to go to the bathroom or get water, my heart freaks out and races and then by the time I sit back down again I feel even worse. This is a bad day. I will get bad days. But on the good ones it is ok to forget about those days because it will drive you crazy if all you do is remember how terrible you felt. And now I am thinking, will I ever fall asleep and how will I feel tomorrow?? Also, can I make it to the bathroom and back again? Maybe with a few stops on the way. And by stops I mean sitting down. The worst part is I feel like a huge burden. No matter how much they love me. I will always feel like a burden. 

My lovely set of symptoms...

Some of my friends and family ask what my symptoms are, which is sweet because then they get a better understanding of what is going on in my day to day life. So I decided to post them. There are two kinds of symptoms that I get; heart and non-heart.

Heart Symptoms:

• palpitations
• heart racing (tachycardia)
• chest pains
• shortness of breath
• fainting
• dizziness
• arrhythmia 

Non-Heart Symptoms:

• numbness and tingling from elbow to fingertips and hip to toes
• bad cramping in hands and feet (it feels like my fingers will curl sometimes)
• stiffness in hands and feet mostly, sometimes throughout whole body
• headaches
• brain fog
• cramping in calves and feet-toes curl
• fatigue
• easy exhaustion
• skin hypersensitivity
• tremors (usually in my hands and legs but sometimes turns into body tremors) 

Redefining 'normal'

I was told that I set unrealistic expectations for myself. I thought that when I was diagnosed with POTS that, sure it would be hard but, that I could handle it. I can handle it but it is one of the hardest things that I have ever had to deal with in my life, so far. I have been overwhelmed recently about my treatment options (there are so many) and it takes so much time and effort. I am a full time college student, thinking about going to law school. I should not be thinking about treatment options and trying new medications, I should be thinking about whether or not I want to go law school and how I am going to pay for it. Since I have been overwhelmed with all of this, I think about it all the time. I try to keep it in and act like I am totally fine with how my life is changing, there are those unrealistic expectations. But I am not fine, so I will keep it in for as long as I can, then one day a flood of emotions come out. Being diagnosed with a chronic illness that I have to live with for the rest of my life is physically and emotionally draining. So, when those emotions come out the only thing I know to do best is talk to someone that has been a huge support ever since I was diagnosed. During our conversation, I learned that I have unrealistic expectations and that I need to redefine my ‘normal.’ I have been living with this illness for about four years but have only known for five months. So, right know I am grieving the loss of my ‘normal’ life. Such as, being a typical college girl, not being able to do simple things anymore, finding a treatment and meds that work for me, not knowing when the bad days will come, possibly skipping class because I don’t feel good (I have already had to do that), possibly embarrassing myself in front of someone by passing out. There is just so much change when I was diagnosed that I have to redefine my ‘normal.’ I have to redefine it to something that is easier for me to live a full and happy life. So I can finish school and get a career on track and maybe go to law school. 

It can be so hard...

It can be so hard trying to figure out a treatment plan the works best for you. Hearing what has worked for others and what hasn't. It is like, who do I listen to? I see so many different doctors and some of them don't even know what I should do. I am surprised when they even know what POTs is. I literally have know idea when I even have time to figure out this treatment plan.

 

Do I want to treat the symptoms or try to use biofeedback to attack the problem?? And biofeedback may not even work...so that is my problem. It cost loads of money, that insurance may not even cover, to go to Mayo Clinic to get a treatment done, that takes a week to complete. I have heard many positive and negative things from people and research that I have been doing?? Finding a treatment plan for POTS is like the hardest thing I have ever done and it is so overwhelming. At age 19 I never thought I would have to deal with something like this. I think I may just go to see a specialist about my problem in finding a good treatment to hear all of the options and reasons on what I should do, before I choose.

 

I am extremely overwhelmed with having to figure out what is going to work for me. I am in college and I can not put that off. Anybody have any thoughts??

You're Not You

My illness is a huge part of my life, I live with it every day. When you are diagnosed with a chronic illness, many people say to you “you are not your illness.” I have heard it many times. Along with, “don’t let it control your life,” or “it will get better.” First, I may not be my illness but my illness is defiantly me. Second, how the hell can I not let my illness control my life? It is an illness! An illness that I will have for the rest of my life. That is what ‘chronic’ means. I really hate to say that, but it is true. Third, you do not know if it will get better. It may be better some days. But on the days it is not, those days are awful. I feel so alone, weak, and useless. Those are the hardest days. Finally, when you’re diagnosed, it is like a weight has been lifted. This is because I finally know why I have been feeling like complete shit for the last four years and it explains every little unexplained symptom that put off my diagnosis for so long. You’re not you. After you are diagnosed, you are no you anymore. You are (insert chronic illness(es) here). You are paranoid, thinking about treatment options, wondering when and where you will be when you are symptomatic, and if the people around you know about it or how they would react if something did happen. You are not you in the aspects of your mentally, emotionally, and physically not you anymore. Although, you may physically look like you have always looked you sure as hell don’t feel like you have always felt. You are not that girl you used to be before the diagnosis. You know the signs and symptoms to look for to prevent yourself from getting worse and ending up in the ER. You are that girl that is paranoid about every little aspect of your day and how much energy it will take out of your day. Your illness does control your life because it is always in you and on your mind. Because if it wasn’t then how would you be able to take care of yourself. You are that label of yourself. Whatever label you put on yourself… it may be the name of your illness, it may be how you are currently feeling, how you know other people look at you, or how you think other people see you. I personally will always think labels are a good thing because that way you will never lose something and you will always know exactly what it is and stands for. But don’t live by that label. Your whole perspective changes, in many ways when you are diagnosed. It continues to change when you hear others stories about their illness. It will every day you live with your illness. 

What works for me (right now)!

I have many symptoms with this syndrome. And many people including POTS patients, other people with chronic illnesses, and people who love giving suggestions all have this in common, they like to tell me what and what not to do about my illness. Yes, I do sometimes take it in but other times I could really care less what you think I should do with my illness. It is MY illness and MY body. I can make my own choices about my health. A lot of POTS patients say not to take drugs because there are too many side effects and because exercise and diet have worked for them, so it will "obviously" work for me. NO! You are wrong. I have tried all of that. I need meds to control my symptoms. I don't even take them everyday, I take them as needed, usually when I know I am going to be on my feet for awhile, or if I have an emergency (like when I am having a really bad set of symptoms or if they just come out of the blue). And guess what? They have been working, sure, I have had a few minor side effects. But I would rather deal with those than my out of control symptoms. A few symptoms I am having with my POTS is that my hands and feet get really stiff, cramped, and painful (nerve pain). Lately, my hands are ten times worse during sleep, I can't even make a fist because I am scared my fingers will curl.  The meds do not help with those symptoms. So sometimes I wear a brace on my right hand, it helps a little bit, not a whole lot. Last week, I went to the Mall of America with my friends and we stopped in a store called Lush that makes "Fresh Handmade Cosmetics" and they have samples everywhere. So I tried some body scrub called "Ocean Salt," ironically, on my hands and afterwards they were the most relaxed they have been all summer. So I bought some!! It got me so excited! That is what is working for me 'right now'! Here is a link to the Lush website: http://www.lushusa.com/on/demandware.store/Sites-Lush-Site/en_US/Search-Show?q=ocean

"What you don't know"

Written on: 15 April 2015

You don’t know how hard it is for me…

               To wake up in the morning

               To take a shower

               To get dressed

               To put my makeup on

               To go to class

               To keep that beautiful smile on my face

I am not depressed

               I am struggling

               With an invisible illness

What is that you ask?

You may not know this but right now,

               My hands are shaking

               My nerves are acting out

               My feet and hands are cramping

               My legs feel like they are going to give out

               My head hurts

               My chest hurts

               My heart feels like it is going to beat out of my chest

               I am exhausted

               I can’t concentrate

               I am having shooting pains in my legs and arms

               I feel faint

               I feel dizzy

               I feel weak

               I feel like I am going to collapse

I am having a flare up

And sometimes it feels like it will never go away

No matter how hard I try

No matter how hard I take care of myself

No matter how many times I do what the doctor says

I am feeling like SHIT no matter what

Because if I am not having a flare up I

               Am worried when the next one will happen

               Am scared that I may embarrass myself

               Am hoping people will understand

But I know they won’t unless they have what I have

An INVISIBLE ILLNESS.

You're on your own.

I am realizing that it doesn't matter where you are in the world or if your with anyone because ultimately you are on your own. You have your own thoughts, feelings, moods that nobody else can understand. Unless you do find maybe someone that is going through something similarly as you but it all comes down to you. It is easy to exchange feelings and thoughts. It is easy to cast your mood on others. But will they ever REALLY understand you. And what you are going through at that time in your life. No, they will not. Because there is only one you.

How people see you

"We all have two people in us. We have the person that other people see us to be and the person that we are. And you are the same. And usually I have let other people see what they see in you, and let them get on with it. It's not my business." Dame Helen Mirren, Actress, Author

Don't let it stop you

This young lady does not let her Chronic Illness weighs her down and stops her from her goals in life! What an incredible story! Here is the link to a teenage girl living with neurocardiogenic syncope and is a successful athlete: http://mobile.nytimes.com/2015/06/15/sports/race-after-race-teenager-crosses-finish-line-then-collapses.html?referrer&_r=0

Find your Inspiration!

Reading this makes me want to find what inspires me to fight! I think my crazy younger brothers inspire me to love life even in the worst times. We have been on roller coaster ride of emotion and loss but we stick together. We have good days and bad days together but we still love one another.

 

Here is a story that I stumbled upon one of my POTS support groups sights:

http://sweetlemonpies.com/2015/06/eden-the-warrior/

Support for the Chronically Ill

Family is the most important support system, especially for me. My mother has been so amazing. She has been to every appointment and remembers to ask questions. She also listens to me when I am stressed and not feeling well. And takes care of me when I am symptomatic. It helps that she is a nurse too. My grandmothers have listened to me, taken care of me, and really try to understand what is going on with me. I think that is the most important thing to me. When some asks me what POTS is about and how it has affected my life. That is truly the best support you can give me, try to understand what I am going through. Share your own experiences too. Some of my family close and extended have done that. My closest friends have also done that and I thanked them for that. So thank you close friends and extended family for trying to understand what I am going through and just for asking how I am doing. Because honestly I am probably not doing that great.

Positive Update

Yesterday one of my best friends told me that I can't just post negative things but positive things as well on this blog. So, I decided to do an update on my health. Last week my cardiologists prescribed me some serious medication that I have to use with caution. It is called Midodrine, it is to help raise my blood pressure while standing which will lower my heart rate. I take it as needed, like this morning for example I had low BP and my heart rate went from 84 bpm sitting to 130 bpm standing. I was feeling terrible so, I took my med. It usually works a few minutes after I take it. And my good news is that I have had no side effects and it is actually helping. I have only been taking it for a week, not even, so I hope it keeps helping.

"When I Wake Up"

Written on: 15 April 2015

I wake up every morning hoping…

that today will be a better day

               it will be an easier day than yesterday

               it will be a day where I won’t embarrass myself

               I won’t have flare ups

               I won’t have to explain myself

               they will understand

               that my invisible illness is not visible

                              or that it is

                              so they will understand

                              what I am going through

Oh, only if they understood

               the pain

               the embarrassment

               the struggle

               the weakness

               the numbness

               the loneliness

When I finally get through the day

I go to bed hoping…

               That tomorrow will be better

               That I did everything I was supposed to

               That I put up a good fight

               That I was strong enough

               And that tomorrow I will be strong enough…

                

“Moments in Time”

Written on: 17 April 2015

There are moments in time

When I forget

When I forget I am ill

               I forget how I felt earlier that day

               I forget what it feels like to be weak

               I forget what it feels like to be dizzy

               I forget what it feels like to be in pain

               I forget what it feels like to feel vulnerable

In those moments I enjoy life

               I enjoy the little things in life

               I enjoy Laughter

               I enjoy friends

               I enjoy family

               I enjoy feeling normal

Later on I realize something 

That I still get those moments

And then

I feel blessed.

"slings and arrows of outrageous fortune"

There's a line from Hamlet that can be taken in from a chronic illness stand point. I have been having troubles controlling my symptoms for the last week (won't go into the details now), but as one of my (lets just call him a mentor) told me, while I was crying over the phone worrying, that "you can't control the uncontrollable." He gave me some needed perspective on my situation, he has a chronic illness himself and has friends and colleagues that also live with chronic illnesses. He talked me through it by asking me questions like: have you gotten enough sleep? Have you been eating?

 

He knows I am stressed with finals week coming up. He was helping me figure out what my "triggers" are. Triggers are what causes, essentially, a flare up. Mine, as I found out are: lack of sleep, caffeine, stress, not eating in a while...and that is all I have so far. So yeah, as I ponder this I wonder how the hell am I going to escape these four "triggers"? I am never hungry and when I do eat, I eat very little (small stomach), I am a caffeine addict (Starbucks), I am a college student, so there goes the sleep and here comes the stress.

 

Also, while I have been thinking about all of these things I remembered what one of my very supportive professors had sent me in an email about my "misfortune." He said that he suspects that it ""weighs heavily on you (something you always took for granted suddenly creating trouble) and sometimes artistic expression gives us permission to explore the limits of our own existence (the "slings and arrows of outrageous fortune" as Hamlet says)."" So yeah pretty freaking deep, right?? I am not going to lie, when I first read this email I cried. I felt as if someone understood me and my "misfortune."

 

But not until today did I actually look up the meaning of what Hamlet had said in  Act 3 Scene 1. It is obviously a metaphor, someone said that Hamlet is talking about "suffering and enduring the hardships of a situation that he is in." Someone else said that it means to "put up with all of the bad things life has to offer." Everyone has their own interpretation of Hamlet but, I think I like the first one. That is what a chronic illness is, it is enduring a hardship of a situation that I was put in and there is nothing I can do about it.

Quote from the book "Man's Search for Meaning" Author Viktor Frankl

Frankl was a German Psychiatrist who spent five years in a Nazi Concentration Camp. He wrote that when he was in the camp he could tell that if certain people would ever be released, which ones would be okay and which would not.

 

He wrote: "Everything in life can be taken from you except one thing; your freedom to choose how you will respond to the situation. This is what determines the quality of the life that we've lived. Not whether we have been rich or poor, famous or unknown, healthy or suffering. What determines our quality of life is how we relate to these realities. What kind of meaning we assign them. What kind of attitude we cling to about them. What state of mind we allow them to trigger."

Invisible Illness Website

Here is a good website that I found last night. It is an invisible illness website with a bunch of articles, suggestions of books and some other great things. http://invisibleillnessweek.com/

I hate blogs but here is why I decided to start one.

As you can tell I am not a huge fan of people that blog about their life and all of their problems. But for those who stumble across my blog and do not know me: Hello my name is Shelby St. Pierre, about a month ago I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS) it is a form of Dysautonomia, which is a nervous system dysfunction. I am not going to go into details right now, maybe later. Oh, yeah I am 18. There you now understand the title of my blog. Now for the reason as to why I decided to start a blog. First; it is the 21st century. Second; for my family and friends. I feel as though it is important for them to understand what is going on with me. And it is also important to me that they understand. NOT because I want their pity, that is the last thing I want. Third; I know they want to know, maybe not all of them. I know it is hard for them to ask me certain questions about what is going on with me and this illness. So why not put it in a blog? And blog about saying that it is Ok for anyone to ask me any questions they want. Finally; I know I am not the only one in my family and out of my close friends that is struggling with an illness. I want them to know that they are not the only ones with this struggle. I want them to know that it is ok to open up and talk about it and how they are feeling. And even though they feel like it, they are not a burden. Well that is all I have for tonight. I am not going to make any promises about when I am going to blog except for when I feel like it. Have a great morning. I love you all!