My Legs Have Failed Me (Health Update)

I have just wrapped up my third week of school and my body hates it. My physical illness, especially, hates school. It hates the stress, the constant busy-ness, the meetings, the drama, and some of the people.

One of the things I learned this week about dysautonomia (POTs) is that it doesn't know how to control anxiety...that explains many things. Like, why I take a lot of medication.

This is my busiest semester yet. I am working full-time and going to school full-time while running an organization on campus. I love it! I love working, school not so much, but I am excited that it's my last year.

My reason for writing this, sort of, update, is that these last three weeks have been great. I have been making money, learning knew and exciting things. However, the drama, the stress of school and work, and running around to get to work and class has been really hard on my body. It keeps telling me to slow down, along with some of my professors. But I just can't. I don't want to. I don't know what will happen if I do. That is what I am afraid of.

Here is what I am afraid of, my depression, it has worsened. Just wanted to add that my depression is not related to my physical illness at all, it is a completely separate illness. In order for me to survive my depression and anxiety, I need to be kept extremely busy. I need distractions. That also goes for, keeping me distracted from my symptoms. Obviously, it can get hard and I can't completely ignore them but it helps my anxiety level and prevents me in a way from having less flare-ups. Yes, I need to rest and I have to admit I have not been getting enough of that lately but it'll get better, I hope.

Here is what scares me right now; my unpredictable symptoms and getting new-ish ones that get worse. On Wednesday, my busiest day of the week, I was in a constant flare the entire day and it just continued, throughout the day, to get worse. I was a little dizzy, I was feeling weak, I was shaky and having tremors. Ironically, I really noticed it to get worse at our first meeting for my Disability group. I couldn't even stand without the fear of loosing my balance or tripping and falling. I did end up tripping on myself but not falling and that is when I decided to sit down for the whole meeting. But then right after the meeting I had to rush to my three hour night class. Which this is the one class that I really enjoy and isn't that stressful. I wish I had more time and energy to put into the readings.

During my last class, my legs had even gotten weaker and heavier. Since it is a religion class we happened to talk about meditation in that class and then we were going to do a meditation walk. I had to go up to my professor to tell her that I could physically not do that. Of course she understood, she also lives with a physical illness. While the rest of the class did the meditation walk, I slowly made my way to the bathroom. That way it wasn't too embarrassing. I didn't want to trip during the walk or worse, pass out. At that point, I still had like two hours left of this class. It was a rough one but I somehow survived. At the end of class, as my professor saw me struggling to leave she thanked me for "hanging in there." Which I appreciate her for acknowledging that.

When I left my class, which was in the library, on the third floor...I just sat right outside of the room that I was in for my class because I knew there was no way I could make it all the way back to my apartment without either falling and hurting myself or passing out and hurting myself. I decided texted one of my close friends at the time, we no longer talk because he acted like  he supported and cared for me even though he really didn't. He was using me. Long story short, he is a terrible human being that played with my emotions. Oh yeah, I forgot to mention my legs were now a little numb and tingly at the end of class as I was trying to leave. That was fun.

Once he got there, he sat next to me and asked me what was going on. Then he grabbed my back pack and I tried to get up but stumbled, I would have fallen if he didn't grab onto me. I think with any other person, I would have felt more embarrassed but since he seemed to be a close friend of mine at the time, it wasn't as embarrassing which is nice for once--he took that away from me too, bastard. He took me back to his place so he could act like he was taking care of me and he made me supper because I hadn't really eaten anything that day. It was nice but sucked all at the same time. Not to mention he had one of his slutty one-nighters over again.

It is scary to think that my legs can just decide to not work. I have a feeling my doctors just won't give a fuck. Which really pisses me off. However, not just at school but what if this happened when I was at work? That would be especially embarrassing. I haven't told almost any of my jobs that I am ill. Why would I? I don't want them to think that I am weak and can't do my job. I have been somewhat OK, on that aspect anyway.

My body tremors overall have gotten way worse since school has started. They are way more intense too, so they have been painful. I think a lot of this has to do with the change in the weather, the cold is very hard on my body because my body doesn't regulate temperature. I am hoping my body will get "used" to it a little bit though, otherwise it is going to be another looong winter.

This just covers a little bit about what is going on with me. The bad flare-up on Wednesday really freaked me out and gave me a little bit of a reason to slow down, but this is the first weekend I get off in like over a month, so I can relax a little bit.

I also just really needed to write publicly about my concerns.

Please leave comments. I like to know what people are thinking. Anybody else with Dysautonomia have this symptom??

'Living with an Illness While Attending College' Article

Here is the new article that I wrote last week for the Odyssey! Enjoy! https://www.theodysseyonline.com/living-with-illness-while-attending-college

Here is a fantastic article!

I suggest that all of you read this article because a lot of people living with chronic illnesses feel this way, including myself.

https://themighty.com/2016/08/why-i-wont-apologize-for-having-fun-while-sick/

Summer Update

I have just realized that I have not really posted about how I have been feeling and what my symptoms have been like in a while. I have just posting sort of random stuff. I thought I would update everyone on my summer and my most recent cardiologist appointment.

I guess I will start out with how I have been feeling. Recently, I have been waking up with body tremors, weakness, and dizziness. It takes me a little longer to ready in the mornings. My apartment has no air conditioning so I think that is one of the reasons why some of my symptoms have been getting worse. The heat is not good for me at all. I have been drinking a lot of water and eating popsicles. That helps a little bit, I also try to avoid being in the apartment if I can. I go on my college campus and hang out in the nice air conditioning or I am at a friends or work.

The plus side is that I have not had an ER visit since February. But I have passed out. Like two weeks ago, after a long active weekend home, when I got back to my apartment, out of nowhere I passed out for a couple of minutes. It was strange, I didn't feel physically that bad but I think my body was just trying to tell me to slow down. I guess that is just a part of having POTs and I didn't get hurt when I fell. I actually fell on a pile of blankets that I have not been using because of the heat.

Most recently, I have been getting really bad cramps in my legs. Which is odd because I have been getting enough salt and water to stay hydrated. I have been trying to do a little exercise, work helps with that. But it is hard because of the heat and I don't have a gym that I am comfortable going to.

My most recent cardiologist appointment happened a couple of weeks ago. I met with a different cardiologist just to see what his opinions were. I didn't like him at all. He didn't try to get to know me at all. How is he supposed to treat me if he doesn't know me and how I live my life? It didn't make any sense. Instead, he just stated facts about POTs. Facts that I already knew. So, I got absolutely nothing out of that appointment. I have been thinking about going to the Mayo Clinic but I don't have the time or money to do any of that. He kept saying things that would help me get better. But you can't cure POTs. You can manage it and try to make the symptoms happen less often. He wants me to be off my medication within the next year but I don't see that happening because this next year I am going to be so busy and stressed out that I won't have the time or money to take care of myself, nor the attitude.

I guess that is enough for now. I will write some more soon.

I Need vs. I Want

I never realized how different "I want" versus "I need" is until I got to college. I am starting to "grow up" and it is terrifying. I feel a little lost and I am leaning on my mom way more than I used to. She is such a great support in my life. I am so incredibly lucky to have a mother like her.

One of the most important things that I learned is that I need to do certain things just to be able to do the things that I want to do. I need to have an education so that I can have a career to pay for things that I need to live and to pay for things that I want to have or want to do in my life. I need to go to class, I need to get a job, then I need to go to work. That way I can do certain things. I need to go grocery shopping so I can eat. I need to pay my bills so I can have an apartment and have electricity. I need to pick up my medication so I can go to school and have a job.

The thing is, people tell you how hard it is but they never actually make you truly understand how difficult it can be. You don't know that until you experience it. I am full on experiencing it and it sucks. I understand why some adults drink so much and do drugs. It is because life can be hell if you mess it up. And it doesn't take much to fuck it up. But those things need to happen. I have had and am in rough patches but I know and am confident that it will get better. I am just a very broke college girl. It will be way better once I graduate. That is another plus to graduating early, not only do I save money and time but I will be working for a law firm in about a year. Like, a really job! Not a job to just survive on but a career to live off of and enjoy. That will be the greatest reward from going to school!

Now, that I am learning all of these "life lessons" while I am in college is certainly going to actually help me while I am out of college trying to live my life to the fullest. So, thanks to everyone that has helped me get to this point. And I can't wait to thank you when I graduate college!

"I May Not Tell You" By; Cindy Kay Bremer

She explains what it is like to live with a chronic mental and physical illness perfectly.

Disaster, Sacredness, and Being Present

Disaster. Is one of life's unexpected jokes that it plays on you and not only everyone you love but everyone around you. It also comes in many forms, lengths and times. I have always had a list of personal disasters I have suffered or that have affected me some way. It is a scary long list. I try not to think about it too much. But here are a few things that are on my list; my illness, the bus accident, the death of my grandfather and some that are more national ones that have affected me are all of the rape and mass shootings going on in the United States. It is awful. It makes me question my future in this life. I have been trying to work through all of these things that have wrecked me and have made me grow as a person, they keep coming up and it is hard to deal with.

It is hard to put into words, but I was listening to the podcast "On Being" with Krista Tippet and she was interviewing someone that has also dealt with disaster. Her name is Rebecca Solnit and she said, "There is a way a disaster throw people into the present and sort of, gives them this super-saturated immediacy. That also includes a sense of connection, it is though in some violent gift you've been given a kind of spiritual awakening where you're close to mortality in a way that makes you feel more alive. You're deeply in the present and can let go of past and future and personal narrative in some ways. You have shared an experience with everyone around you and you often find very direct but also metaphysical connection to the people you suddenly have something in common with."

And she asks. "How do you stay awake during that sense of presence?" I have had some conversations about this with many people. I have also been thinking about it since I took the class Poetry and the Sacred. And to write poetry, you need to find what is sacred to you. You need to have sense of self and need to have a sense of sacred. You need to open up and become present. We made lists about what distracts us from the sacred and what helps us get there. Both lists where very long.

One of the most important things that I had learned in that class was that sacred is and has a different definition to every individual. It doesn't have to be religious or spiritual. And like disaster, sacredness comes in many forms, lengths and times. It is a wonderful thing though. So, to be more positive I will list some of mine; family and friends of course, nature, trees, technology, and education. They are just a few things that are sacred in my life. It is important to thrive in the things we love and find sacred. It gives us hope and a will to keep on living.

I honestly don't know what I would do without my friends and family and I am sure that you feel the same way.

Appreciating things is a little easier to do than to be present. Being present is a lot harder. You have to appreciate things in the present moment that you are feeling and experiencing. You have to be open minded and try to be positive. I also think it is a part of becoming inspired. And inspiration is pretty amazing. The ways that we are inspired and moved by people and events that happen in our lifetime. It is what puts me in awe. It compels me to write and share. It helps me move on and cope.

This isn't supposed to be a sappy story or something I am telling someone how to live or experience things. I am all about writing how I feel, what I have learned, and to be honest. So, I hope that it comes off like that.

Chronic Illness article

Here is a great article that a friend of mine shared with me. The women that wrote this is an inspiration on how not to give up on yourself and your body and mind. Enjoy!

http://www.dailyo.in/lifestyle/health-chronic-illness-h-pylori-gastritis-stomach-therapy-naturopathy-yoga-delhi-stress/story/1/10787.html

Consistent Debacle

I am still at that point where I am consistently stuck in a debacle on whether or not to tell my friends or family when I don't feel good, when I am with them or even not with them. It is hard because I don't want them to overreact because if they do, sometimes I will. Sometimes I don't even know what I need and most of the time there is nothing I can really do to feel better. That is one of the worst parts about having an illness. Like, what would me telling them how bad I feel do, not only for me but for them?

What can they do to help me? That is what I think to myself as I am sitting trying to fake feeling good while I am in a room with my friends. I think I am going to pass out, I am in pain right now and they don't even know. I am having trouble breathing and I can't even tell them because they wouldn't be able to do anything. It sucks. But I am fine with having to not tell them all the time. If I had to or even decided to, it would be annoying and not just for them...but me too. I hate having to admit to myself how bad I feel or how sick I can truly get. I also don't like to see the pity face that they all make. I adore them for caring so much and love them for being concerned. But they really don't know how much I try to actually hide. Right now, I think my new roommate is the best at figuring out when I don't feel good and we haven't even been living together for a week yet...She just knows and I don't understand how but she does. And she will be kind enough to ask me every single time if I am ok and of course I won't admit it. I love her for that and I am glad that I am going to be spending my time with her this next year.

...And I don't know if I will ever be able to be vulnerable, consistently vulnerable, to be able to do that. To be able to tell anybody, really, how I am feeling...

Inspirational Questions

I was looking through and organizing a bunch of papers and going through my desk drawer and I came across a few things. The one thing that is why I am writing this post is a high school graduation present that I got from one of my teachers. It is a little booklet called "One Last Assignment," and it was made by my teacher. She is pretty inspirational herself. I am so glad that I got to be her student and kind of wish that I would have paid more attention to her and all of my teachers in High School.

This booklet is sort of filled with inspirational questions. And inspiration is kind of an amazing thing to have in life. It comes and goes as it pleases and as you are aware of it. When you are aware of your surroundings it comes more often but when you are not it sort of just disappears until it gets your attention again. Anyway, I am going to list all of the questions in this post and then maybe, just maybe, continue to write and semi-answer the questions in future posts. All of them you need to kind of take-in and read over and over again. You need to let some of them soak in for awhile.

Here is her introduction; "As Kobi Yamada says, the quality of life is in direct proportion to the quality of the questions you ask yourself. Questions have tremendous power. Questions are the source of life-enriching change. Your focus creates your reality. Whatever you are experiencing in life is not based on life itself but what you are focusing on.

Yamada does on to say if you want to change your reality, change our focus. If you want to change your focus, change the questions you ask yourself. Questions control your focus. Therefore questions control your own experience in life. Thinking is nothing but the process of asking and answering questions. Instead of asking; "Why me?" "Why am I so unhappy?" "What's wrong with me?" Try asking; "How can I make this work?" "How can I make a difference?" "what am I grateful for?"

Questions should empower you. They are challenges, inspirations, road maps, hints of something better, calls to action and new beginnings. These questions are questions for you to "live into." These questions go beyond the questions I have asked you in my classroom; while you may have graduated you will always be my student and I leave you one last assignment."

Here are the questions in order;

"What do you want from life?"

"Why be afraid of something you want?"

"Do you have the courage it takes to get what you want?"

"In order to find yourself, are you willing to lose yourself?"

"What do you pack to pursue a dream and what do you leave behind?"

"Are you the type of person with whom you would like to spend the rest of your life?"

"Is it true that you have to see it to believe it, or rather, do you have to believe it before you can see it?"

"If you don't have all the things you want, are you grateful for the things you don't have that you didn't want?"

"What would you attempt if you knew you could not fail?"

"Do you know how to dream with your eyes open?"

"Your destiny is coming, are you ready?"

"Can you really live life without loving life and can you love life without living life?"

"What is your unrelenting passion?"

"Do you let yesterday use up too much of today?"

"What are the five things you value most in life?"

"Do you treat love as a noun or a verb?"

"What is the one thing you think of that always makes you smile?"

"If what's in your dreams wasn't already inside of you, how could you even dream it?"

"Do you know that you know far more than you know you know?"

"What good has worrying ever done?"

"Have you begun today what you wish to be tomorrow?"

"Are you making new mistakes or the same old ones?"

"What would you think about if you were not taught what to think about?"

"If you are not happy with what you have, how could you be happier with more?"

"Where do you draw the line between possible and impossible?"

"Is not every end a new beginning?"

Flare-ups in class

This is the typical scenario of me sitting in class while a flare-up starts or continues form when I first wake up:

Should I leave? That is what I ask myself while I am sitting in class having palpitations and trouble breathing. With a touch of lightheadedness, do I risk trying to leave to catch my breath? About 50% of the time I will because I haven't actually passed out in over a year. It is just the constant feeling of passing out that I feel. Yes, the chances of me actually passing out are greater than probably every person in this room but I do it, I leave. Where do I go? I go to the bathroom stall and pray that nobody else is in there, so I can take deep breathes. So I can crouch and take deep breaths and cry a little as I try to make my body cooperate again. This usually fully works about half the time the other half of the time it makes it a little better but is still there. They don't even know, my professor doesn't even know that I could pass out as soon as I stand up. Then when I think about that, the professors response of me passing out plays through my head. All hundred possibilities of their reaction to me passing out goes through my head. At this point I am not even paying any attention in the class. I am just there for attendance and some notes that I won't remember taking. How would my classmates respond? Why does this even matter? I would never get to see their initial reaction because I would be sprawled out on the floor, unconscious. Either way, if I am free after class and have a little time to rest up then I do. I go back to my room and try to rest even if it is just for a half an hour because that can make all the difference. I am always exhausted after a flare-up.

There is also no point in trying to explain to anyone what is going on. If I do end up passing out or falling down or something; I would just show them my medical alert bracelet and tell them that I will be fine. That is what I am going to tell my future professors, I am going to have to tell them that I am at risk to pass out. And what to do if something would ever happen. I do not like having these conversations but it has worked in the past. I sort of warned a couple people, one of them including a professor, that I went on a trip with and I ended up going to the ER. I never passed out, I almost did (of course) but I had to go to the ER or I would continue to get worse. So, "warning" professors and important people in m life about what can happen, is what I am going to have to start doing from now on.

Any questions? Comment below.

In Tune.

I defiantly never remember ever being "in tune" with my body. Even on my good days, now, I don't ever feel like I have full control. I was probably "in tune" when I was younger because I didn't really know or think about young people becoming sick, especially me. Because nothing ever happens to me or my family. Ha. Nope. These days, since my grandpa got sick five years ago, that is when things started falling apart. My life already sort of sucked in other ways, but I just put up with it and it didn't completely destroy me. Now that I look back, yeah my life was fucked up. Ask myself all the time how I have been able to do it and I still can't come up with a reason. But the good news is...I don't know. I am managing?! Trying. I keep trying...I haven't given up?! I think I am too weak to give up, at this point in my life too. And I have people to live for. I would hate myself if I wasn't here to see my brothers grow-up and my friends "happy-ending." Wow, this got real deep. But that's how I feel. I am not in touch and that is why I don't know what my body is telling me. I never know what my body is trying to tell me sometimes. 

Less sympathy

I am not saying I had a whole lot of sympathy before I was diagnosed with POTs but I have even less now (in most cases). I say this because I notice myself getting so annoyed with people complaining about colds or broken bones, which are temporary. Like, recently my cousin broke her femur which is somewhat serious, and I do not know all of the details but I noticed how she got flowers and 'get well soon' shit and I am just like "WHY?" It is only temporary, unless it unfortunately turns into a chronic thing but still. I don't understand. I and many, many others suffer everyday with our illnesses. I mean I do feel some emotion for her because she is missing out on work, in pain and has to move back with her mother during her recovery but still, she will recover! Then she will go back to work and her apartment to live on her life. Then there are people with colds, those people piss me off even more. Especially the ones who are in college, because they DON'T take care of themselves. It is literally your own fault you got this cold. And again, it is temporary. You will be FINE! Imagine feeling like you have a constant cold, the side effects to the cold medicine and the feeling of consistently broken bones. That is what a chronic illness feels like. Yes, it does suck if you have a cold or broke a bone. But having something chronic, continuously sucks. Can you see how I have less sympathy for those who get a temporary cold and temporary bone break? Also, I forgot to mention that when someone with a chronic illness gets a cold or breaks a bone, that is a major setback for them. Their immune systems are already down whether it be from their medication or autoimmune disease. Mine is down because of my medication, POTs is an autonomic disorder not autoimmune (just to clarify).

Does this make sense or am I just over-stressed with everything and everybody in my life rn?

The only one that understands is gone...

On April 29, 2012, my grandpa Leo unexpectedly passed away. That day and the week that followed was the worst week of my life. It was an emotional roller coaster. It still continues to be an emotional roller coaster.

The four year anniversary of his death was last week. But two weeks ago, with the stress of the semester and personal life, I missed my grandfather so much. I felt and feel that HE is the only person that really, truly understands how hellish my life has been lately and what I have been through the last four years, since he has been gone. And that is what is so hard on me. I can't talk to him, at least I can but he won't respond and I can't hear his voice or see his facial expressions. It is almost as though I feel more connected to him now then I ever have when he was living.

Two weeks ago, I was visiting my grandmother, we were having family Easter. It was a bit late but that was the only time that worked for everyone. I was so overwhelmed and depressed that it was hard to even hold a conversation with someone. I need to leave, I did. I didn't know where I was going to go but I took my parents Jeep and left. First we went to a store, then we just drove out of town and that is when I realized what I NEEDED. I needed to see my grandfather. I couldn't even remember the last time that I had seen him. I turned the Jeep around and started driving towards the graveyard.

My brother was with me. I told him how overwhelmed I was and that I was sort of breaking down. I told him that I knew subconsciously that I was going to end up going to visit our grandfather. My brother is pretty amazing, he just sat in the passenger seat listening to me. He was quiet. I thought that he thought I was crazy and he probably has always thought that.

On our way to the graveyard, the song "7 years" comes on and before it even plays they radio host talks about how the songwriter wrote the song after his dad died unexpectedly at 60. That is the same age my grandfather unexpectedly died at. The song is about growing up and living life. It is one of my favorite songs right now. As soon as it started playing, that is when I started crying (not a lot, but a little bit).

We arrived to his headstone, I just collapsed and sobbed my eyes out. I talked to my brother about how I felt and told him that I needed it. I told him that I was glad he was there with me. It was amazing in one of the worst ways possible. It was a granddaughter still mourning the death of her grandfather after four years. It was a granddaughter asking her grandfather; "Why? Why me? When will it get better? What is going on with my and my life right now? When will it end? When can I see you?..." I sobbed and sobbed. It felt good to release the demon of emotions inside of me.

Then we left, we arrived back to my family. My curious family. wondering where I had been. Confused and worried but they got it. They understand how heartbreaking the loss of such a great man was and continues to be on our family. It tore us a part and we are finally getting our family back together and nobody in our family wants to admit that except me.

The point is; we all grief differently and we all continue to grief, no matter how long ago they passed away. When I told my friend a shorter version of this story, he said something along the lines of, "I want someone to care and love me that much. It is amazing how much you can love someone and have an impact on them in that kind of way." I thought to myself and sort of said out loud, "yeah, that would be great. It is sad but at the same time, I do want to have that kind of an impact on someone."

Now that I think about it, I think that is one of the reasons why we live and keep living, it is to impact people. Impact them in a great way, in a loving way. In a "I can't live with out you way."

I know, how much I love and miss my grandfather but at the same time my grandmother is now alone and she lived everyday of her life with that man. He is gone and she is alone. She knew him for such a long time. That I can't even image the greater loss and mourning she has done and will continue to do until they are reunited...

Post about anything!

I don't always have to post things relating to my illness. I can post about anything that I want. I just happen to realize this, it has been a little over a year since I started my blog. I can share other stories and aspects of my life. I can do whatever the fuck I want! This is great. This came to be, because I was thinking about how I really wanted to share with you all about a great friend I have and how he made me realize something magnificent. I will share it and many more in the next posts to come! Thanks for reading my blog. Please comment and share!

The self-destructive ways of life.

We all have a 'self-destructive' part of us, sometimes I don't think we realize it. It is there, it is in our subconscious mind and it hurts us and those around us. Sometimes, it comes out into our conscious mind and it gets worse and you can't believe it took that long for it to come out. But then you realize in that same moment that it was there all along. It sucks. It is life. You can't really do anything about it. You can try to ask for help but then you feel weak even though you are being strong but that is a part of the self-destructiveness. It is also the loss of self-confidence and blaming yourself for everything that goes wrong and not giving yourself credit for the good things. It is hard to understand if you have never experienced it but then when you get it, when it happens to you, you understand. And you feel alone.

I have all of these words in my head, I just needed to write them down. I wasn't going to but decided to, just now. Lately, it has been very hard for me. Some of my friends know something is wrong but I don't know what to tell them. It is like everything on my life is collapsing in on itself. I have no motivation, I feel like I have no strength at all and I keep putting myself down and don't know what do. It is hard for me to keep conversations and to concentrate on having a conversation and actually doing 'normal' things. I just don't know what to do anymore. My family is going through a rough patch, my GPA is plummeting, some of my friends are not doing so well, I can't keep my room straight, I am just fucking up left and right, I just can't. I don't want to talk to my friends and family about it because I don't think they will understand at all.

I am at the point in my life where I am subconsciously tearing myself apart from the inside and outside of my life. I will not go see a therapist, I tried and I never understood that talking to a stranger could help. I mean not for me at least. Talking to a therapist, to me, is like biofeedback. It just doesn't make sense. I am constantly thinking about how much I hate my life right now. It doesn't make any sense but at the same time it does. I am only here because of friends and family. I have lost all confidence in myself.  I don't want to be a burden on anybody. That is why I haven't told anybody about this. I have been struggling with this all semester. It has just been continuously getting worse.

I have not been thinking about taking care of myself at all. I have not been doing a good job at that at all. I have been doing things that I never thought I would ever do because I think to myself like "who even gives a fuck? what is the point? I am already sick? I am going to not live the full life I always thought I would. whatever 'living a full life' means." A lot of it is stuff from my past and everything else that is piling on and piling on....I have made a lot of realizations about my life this semester and they are honest and not good ones.

It is like I want to talk to someone about it but I don't know what to say. I don't know where to start, I don't know who I can trust. This is just a start. But I have not lost my hope. I know things will get better. They always do.

I have been self-destructing all semester and it just keeps getting worse and worse. I figured that writing this would make me feel better and it did like a little bit. I think the sad and sort of funny part about all this,  is that nobody even knows. My friends and family don't know that I am self-destructive and that I am making questionable choices. They know I have had a hard semester but they don't know how bad it really is.

I know that as soon as they (friends and family) read this that they are going to try to help me and reach out to me. I don't want them too. It will just be overwhelming. I don't like it when people tell me how to live my life and what I can and cannot do. It is one of my biggest pet peeves. This post is sort of more of an awareness to them. This is what is going on in my life. Don't give me pity. I don't need it. I need prayer and love.

I think I am going to keep telling people that I am fine because I eventually will be. I hope.

A Huge Shock

After I was diagnosed and started to tell close family and friends about my illness, they were all shocked. Most of them anyway, they were shocked because they didn't even know something was wrong with me in the first place. This is because I was and continue to be very good at hiding how I feel emotionally and physically. I didn't want anyone to know because the doctors didn't even think that there was anything wrong. I knew something was wrong but didn't know what. Then when I was finally diagnosed, I still had to try to figure out what I had. I had the name but the doctor didn't do a very good job at explaining what this did and what it was. So, I was still researching and trying to figure out what it was. It felt good to have a diagnosis but scary because it was such an unknown illness and it was hard to wrap my head around it. 

People didn't even know I was sick. That is why they were shocked to find out that I was. They didn't know I had been suffering from this illness for about four years before I was even diagnosed. I can believe it would be hard for them to find out that a young college girl is sick but looks completely fine on the outside. Sometimes it was even hard for me to wrap my head around how great I looked but how shitty I felt. 

Even before I was diagnosed, my mom knew I wasn't feeling good but she just didn't know how often. I didn't go into great detail with her about it because I didn't want to worry her. I didn't want to tell her about all the times I had to lay down or sit down because I thought I was going to pass out. Or about the times that I fell to the ground because I was too weak and almost passed out. It worried me but I didn't want to worry her. A mother shouldn't have to worry about her daughters health. That is not the way it should be at all. But it is the way life is. It is not fair. 

Needed a Little Bit of Change

I hope you all have noticed my new template on my blog! I love it! I need a little bit of change in my life. It has been one of the most stressful semesters I think I have had. Then again, with this illnesses and everything else that has been going on in my life, every semester is stressful. But for some reason, this one seems to be really bad. I am giving myself another little break. Taking a few "personal" days off from school and leaving the city. I am going to spend some time with my family. I haven't seen most of my extended family since Christmas. So, I think this will be good for me! Plus, since I am going to be gone and missing some classes it has given me some motivation to actually get my stuff done. I have had like no motivation to get anything done this semester. Today, I want to get it all done, like right now.

New Blog; Check it out!

A friend of mine started a blog! Yah! She mentioned the group that I started on campus! I am so glad to know that the org I helped start has helped her open up about talking about her illness!

Here is a link to her blog: http://www.agirlnamedellie.com/living-chronic-illness-pcos/

One Year Diaversary!

Yes, that is right. It has already been one year since I was diagnosed with POTS. Today is the day, April 6th, the day I was finally given an answer to all of my problems. Although, I was dealing with POTS for at least five to four years before I was diagnosed, I was just glad to have a name for the hell that I was going through. It gave and still gives me a name to blame. Diaversary (diagnosis anniversary) is a term that I was told by my friend who celebrates her own Diaversary. I mean it isn't the best thing to celebrate but it has greatly impacted my life in many ways. It has changed every part of my life; my personal, social, family, school, etc. I have a blog now and started a Chronic Illness Awareness and Support group on my college campus. I have met so many people after being diagnosed. I have learned to adapt, sort of. I have asked, listened and learned from other people's stories. It has been truly life changing, of course I would rather not have this illness but I have no choice. I guess I will just have to accept that.

One of the things I have most appreciated after being diagnosed is seeing how the people in my life have either come or gone. The ones that are still in my life; I truly love and appreciate. The ones that have seen me at my absolute worse really know how bad this disorder can get. My mom says that she actually forgets how bad it can get because I am so full of energy, ha, when I have energy. I think I forget too. Then I remember, when I have a bad week like this last week. People have been there for me whether I am just having a bad flare-up or in the ER. Some have taken me to the ER or visited me there and others have just gotten me water or my pills and I appreciate all of it. It is the simple things that really help me too. I don't think people realize that.  Another thing people don't realize is that just saying something encouraging to me when I am feeling terrible helps me fight. And that is why today I am wearing my shirt that says, "I'm not superwomen, but I'm fighting dysautonomia so close enough." Dysautonomia is the 'umbrella' term for POTS, just in case some of you didn't know. I will write about that eventually.

You may be wondering how I am "celebrating" today. Well, I am wearing that shirt and I have four classes and three meetings today. One of them is the Chronic Illness meeting and we will be talking about our and sharing our diagnosis stories. I also bought some candy for whomever shows up! So, that is how I am "celebrating."

What a journey it has been and will continue to be...

Sharing Stories and Spreading Awareness (Autism):

I want to continue to do things like this; sharing peoples stories and helping spread awareness. I see posts on FB by my cousin Melissa about how she is a special needs mother and trying to spread awareness about Autism. I realized that I didn't know her and her son's story. I have always wanted to know but just never asked. So I finally did last week when I saw another one of her posts. Here is her story: 

"My journey with my sons Autism began in 2011 at the age of 2, when my dad came to me about concerns with Julian's development, I remember at the time I wanted nothing to do with the thought. I didn't want to believe that something could be "wrong" with my baby boy.  He hadn't spoken yet, only baby babbles and said mama occasionally, other than that Julian was early with his development. He crawled at 5 months old. Rolled over at 3 months old, walked at 11 months old.  It wasn't until 2012, after I had moved back to Minnesota from Virginia during a divorce, that I learned about the Pediatric Autism Clinic at the University of Minnesota. I waited for a year to get into this clinic after Julian's new pediatrician saw my concerns and referred me. 

I remember the day I got the call that there was an opening earlier than our scheduled appointment and of course I took it. Julian's Dad and I are still friends, so he came with me to the U of M for his appointment and that day we met Dr. Rumsey. She is a wonderful, wonderful neuropsychologist and we still work with her today. Anyways back to that day, Julian underwent a bunch of testing, and Dr. Rumsey confirmed what we already knew. Our son is on the Autism spectrum, with a diagnosis of global developmental delay in addition to that.  It wasn't hard to accept because at that point I had come to terms with it and began advocating for my son after the big move back to Minnesota. 

I got him the services he needed with early childhood special education, speech therapy, occupational therapy, PCA services and a good disability social worker, who we still work with. Julian is non-verbal, with self-injurious behaviors.  In the beginning, he didn't self-injure, that didn't begin until about the middle of kindergarten, which began with pinching his cheeks when he would get overstimulated or upset and unable to communicate his needs. With continued redirection of his self-injurious behavior the cheek pinching stopped for a while, then he began to bite his wrists so badly they would bleed. This got Julian a referral to a level four setting school for developmentally delayed children.  

This school has been good for Julian, however, it is an hour and a half drive from home, and that takes a toll on him. Living in a smaller community makes it harder to get the services you need unless you know where to look and know how to advocate for yourself. Having a good support system has been very very helpful as well.  Julian is able to better communicate, using something called picture exchange communication system (PECS) which he is very good at, he will flip through a book, and make me a sentence, then hand me the sentence strip to let me know what he is requesting. He also has an iPad that we use with him, although he doesn't always want to use the iPad. Julian is a very stubborn boy, (obviously a Borning lol) we have touch German blood and don't give up easily. He is also a very sweet, smiley, giggly, happy-go-lucky little boy. Everyone who meets Julian comments on how sweet he is. That doesn't mean he doesn't have bad days, winter is especially hard for him and we usually see an increase in the meltdowns and the self-injury.  Bath time is really a struggle for him. Because is sensory overloaded, and relies on a blanket covering his head to "ground him" when we take the blanket away for his bath he will go to bite himself, so it requires two adults to bathe him, so that he does not hurt himself. This is getting better now, but for a while it was so bad we had to rely on giving him sponge baths so that his wounds would heal.  

He might always have issues with the sensory overload and he might always regress a little bit, I have hope for him to go to college, just like any Mom hopes for her child. I know that Julian is very very smart, probably smarter than we are. His IQ is high, even though he has a developmental delay he is learning, just in his own way. Outside the box, and the norms of society. I also know that I will take care of Julian until I'm too old to do so, I will never give up on him, I'm his constant, in a scary changing world, I will never put him in one of those group homes when he is an adult, I can't bear the thought. How he would feel.  He'd feel like mommy gave up, and I won't. Ever. He is only 6, I have so much faith in him that he will go far in life with the right support and the right therapy. 

Julian loves to be tickled, when he is having a good day, his giggle, which is like Ernie from Sesame Street, is infectious, you can't help but smile and giggle along with him because he is absolutely delighted in what he is doing.  On bad days, Julian tends to get very vocal, he'll screech and cry, and that can be emotionally draining because I go through all the steps to get to the bottom of what the problem may be. Is he tired? Is he hungry? Does he need to use the bathroom? Does he not feel good? The list goes on and on. I'll suggest to him that he uses his PECS, or lead me to what he is wanting and show mommy. Sometimes this works, but if he is not wanting to cooperate and let me know of his needs, it is really hard and it's a guessing game.  After a while he will usually calm down, I have found that lavender oil foot rubs and joint compressions really help him to feel more centered and grounded. 

I was doing all of this as a single mother, as Julian's dad lives in the cities and I live three hours away. Although we are friends, he does not see Julian more than once a month. In 2012, I met someone in the midst of the divorce, fast forward to now, 2016, we got married, and his support and understanding of Julian has been wonderful, he has gone to U of M appointments with me, IEP meetings, doctors’ appointments. The father that Julian needs every day, he finally has, when I'm exhausted and what I'm doing is not working with Julian he steps in and will help Julian with whatever he is needing. 

We still have daily struggles, some more than others, but we have a good support system in place. I keep advocating for my son, never giving up hope, and spreading Autism awareness, he is not " disabled" he is differently abled, and he is beautiful."

Body Tremors

This is the video that I said that I would post. This is of me, obviously, in the ER in LA right after I got my meds and started to feel better. But I was still having bad body tremors. It is mostly in my left arm.
https://youtu.be/GTIwU5EimHE

What I make myself do

As many of you know, I am a very busy person. I am a full-time college student, I work and I run and am a part of organizations on campus. There are many times when I have had to make myself do things, just to keep up appearances or to not get behind. I have a friend on campus who I have grown very close with this year, who also has POTS. Meeting her has helped the both of us. We talk about symptoms, we make POTS jokes that only us understand, we text each other when we are having a flare-up, we give each other advice, and help one another through the bad days. We also hang out on our good days, when we can. When I got back from my LA trip, I told her all about my ER visit. Then we joked about how there are things that we just make yourself do. The best part and worst part of our illness is that people can't see it. It is invisible. This means we can get away with making yourself do things when we don't feel good because we don't look sick. We can fake it, until we make it. So we just listed a long list of things that we have to physical and mentally make ourselves do, and most of them are everyday tasks. Unless, I can't like physically get myself out of bed or have a really bad pre-syncope episode.

Here is what we came up with, we make ourselves...

-go to class

-do laundry or it never gets done

-do dishes or it never gets done

-go to work

-go to meetings

-pretty much, go and do anything

-sometimes homework, if I don't want to deal with explaining to a prof. that I was unwell or in the ER

-take the stairs, to strengthen legs

-walking in general...everyday...my legs are so weak and cramped, I trip a lot

-going to appointments, I hate going to any form of appointment (feeling good or not)

-hanging out with friends, sometimes I do it to change my mood and the great ones make me feel better

-smiling, everyone with an invisible illness has had to force a smile more than once

-acting like I care, I don't know if that is just a part of my personality or if I don't actually care

All-in-all we make ourselves, I make myself do my "normal routine" my everyday routine. Why? It prevents me not from only going crazy but it gives me hope that I may get better and have a happy future. Especially, if I keep working hard and try not to let this illness get me down. It is hard, it is a crazy roller coaster ride and I am glad I have people that are there for me in my life. If I didn't then I probably wouldn't be here.

Apparently, I am a better actor then I think...? Who really knows? I just know that when I need to act a certain way or need to do something, I do it. That is just the way I am. Only if it is truly important to me. Otherwise, I am just honest and tell people I don't feel good. But the reason I do "act" is because I have more bad days than good. I try to stay and act positive and luckily, most times I am.

Side effects

There are many different types of side effects; side effects of medication and side effects of having an illness. I am now realizing that I haven't talked about the side effects that I get with my medications. Some of them are harder to notice but others are and can sometimes be unbearable. It depends on the day, and how many I had to take of my "take as needed" drug. That drug is Midodrine, it is a powerful one that instantly raises my blood pressure to lower my heart rate. It is very helpful when I have a flare-up and when I know I am going to be walking around or on my feet for awhile. The struggles of walking around my college campus are so real and this drug helps. One thing about this med that I don't like, is that if I take it I can't lay down or stay sitting for a long period of time otherwise, it will raise my blood pressure up to much and that is no good. So that means I can't take it before bed if I am feeling bad. If that happens then I usually just tough it out and try to fall asleep. In other words, I tell myself I am fine. I have a few side effects with this drug, since it is an amphetamine/stimulant so, when I take it I have tingling/itchy scalp. I also get even more hypersensitive to the cold/wind. Sometimes when it wears off, my blood pressure has obviously dropped and so I go into a flare-up faster, this especially happens if I don't drink a lot of water. Those days are the worst but it doesn't last all day. It is a sort of thing that comes and goes. The other med I take is called Fludocortisone it is a salt-retaining steroid that people with Addison's disease take and so do a lot of POTS patients take for obvious reasons, to help raise blood pressure. I take this pill every morning, I also have to make sure I drink a lot of water with this one. I get stiffness mainly at night and in the mornings when I wake up with this drug. That is the only side effect that I have actually noticed with this med. the side effects to having an illness are going through the five/seven stages of grief of loosing your old life or the life you used to have. It is a process, I know that I am not done going through them all. Some weeks as many of my friends and family know, that I end up going backwards or all across the map. It is a crazy part of life that many people end up going through, unfortunately. 

Asshole ER Doc.

I have heard some horror stories about POTS patients that have bad experiences with doctors and nurses either not believeing that POTS exists or they don't give them good treatment or make them wait forever. I didn't think the world could be that cruel. I didn't think doctors and nurses would not believe in an illness or even treat it. I didn't think that a doctor would interrogate a patient about the meds that they take. I would have never thought any of this or believe the horror stories that I have read on various blogs and Facebook support groups. Unfortunately, it is true. I have had first hand experience and it was aweful. An ER, let alone a hospital, is a place where a person should be taken care of and feel safe. But instead when I was in a California ER I was interrogated by a doctor. He suggested that I go off my meds for a year, just to see what happens. Well, guess what?! I have gone off my meds for two weeks and felt aweful and could barley function. He also questioned the meds I was on and then asked me where I was diagnosed. I was diagnosed by a Cardiologist at the U of MN! A great hospital. Really?! Like what the fuck? It is pretty fucked up that you don't believe a patient who is shaking (body tremors) right in front of you. You CAN'T see all illnesses. You can't see a heart attack or a stroke or pain. You would think that an ER doctor would know this. He sure didn't act like it. It was so fucked up that I had to DEFEND not only my illness but why I was in the ER. Did he think I wanted to be there? Seriously? Not only did I wait about three hours just to see this asshole doctor but then I had to defend why I almost passed out while I was waiting to see him? I wish I could just give them my POTS so they would know what it is like to live with this bullshit invisible illness. And that is exactly what I thought while I was in the ER. I even understand as a human being that it can be hard to believe someone when they don't feel good but if they are shaking and can't walk and look pale or flushed. Like really?  Do I even need to say more?

"Sick girl"

It is hard to be honest to someone, sometimes, about how I am feeling physically and emotionally about my health and the situations it has put me in. I don't want to be that "girl," the over-dramatic "sick girl." Yeah, I can be somewhat over-dramatic sometimes when I am overly stressed and in a flare-up. I know that my mom and some friends who have seen me in my worst of flare-ups know how I can be. It is when I am at my worst. It sucks. It pisses me off. I get angry, then I cry. I should be crying more then I actally do. But I hold it in, I have to because I don't like crying in public. You get it...some days I feel like the "sick girl." That is why I don't like talking about it some days. Because I don't want to seem like that or seem like I am weak. This is because I actually feel weak. I feel like I can't talk to anyone because no one understands me. Some days, most days it is especially hard for me because all I want to talk about is how I am feeling. But that would be annoying for everyone. I do want to just scream and break out crying but I can't. I can't because then I am weak or I am in public. I really don't think that would make me weak but in the moment it feels like a weak decision. If I do talk to people when ever I feel like I need to it won't only be annoying but the feeling of being the "sick girl" will come off even more than it already has. I don't want that at all. So I will just keep quiet, that is one of the biggest lessons that I have learned from this illness; to just keep quiet. If I am quiet it is because I am just worried and thinking about how much I just don't feel well. I am trying to distract myself but sometimes those distractions don't work. Sometimes those distractions can be destructive. It is hard to find what works best. Sometimes it fails and it sets me back. It doesn't help. Then I just move onto something else.  There is definitely an unfillable void in my life right now. I think it has been there for awhile but I have just been avoiding the reality of my life.

 That is why I blog. I blog because it helps me not only feel better but I can get it all out. I can unload. It doesn't matter if someone is reading it or not. It do it for me and no one else but me. Well, at least posts like this. The updates and ER ones are for my family and friends. The blogging has been helping me fill parts of the void. It doesn't last long. But it is a start and a short-term fix and solution right now.

Biggest fear

When I have a bad dream/nightmare, it isn't the typical kind of nightmare. It isn't about zombies or spiders or demons. Well, sometimes demons. But my point is my nightmares consist of me ending up in a wheelchair or with a walker. This because I know that about 25% of POTS patients end up in that position. I hear and read so many horror stories about other POTies expericenes. I am terrified that I am going to end up like that. I know I would be fine and will be fine. I know I would be able to handle it, like I have been able to "handle" every other thing. But it still scares the crap out of me. Especially, when I have a bad day/flare-up. Like today, when my whole body, mostly my legs feel weak. It is crazy scary. Not only do I have a fear of it but I have actual nightmares of me in a wheelchair. It is aweful. I wake up sobbing. I don't know how else to describe it. It is realistic things like that, that freak me out the most. I think about it all the time, especially on my bad days. 

ER Visit; LA Style

I was in LA for the ACP journalism convention from Thursday 2/18-Sunday 2/21. Overall, it was a great trip! I made great friends, bonded with some great co-workers and learned some new skills to bring back to the office and for my future in writing. I also happened to land myself in an ER. It all started early Friday morning when I was trying to go to sleep. Not only did I notice that it felt like my heart was beating out of my chest but I felt like shit. I was nauseous, dizzy, had bad leg and feet cramps, and was having body tremors. Since I didn't want to wake people, I decided to text my mom (since she works overnights). I took my meds to help my nervous system calm down. So I texted my mom until the meds kicked in and of course took a bath. Baths help my body calm down but I can't take too hot of baths because that will make my body hate itself even more (dehydration). Did I mention that my face was really flushed? Well, it was and it was bad. So, the bath and meds helped a little bit. I still had a high heart rate in the 130's. It all finally calmed down and I was able to get a couple hours of sleep. I woke up feeling terrible. I had a headache, small unnoticeable tremors, and fast heart rate. I decided to try to go to a two sessions and eat some breakfast because I thought it would make me feel better. It did. I felt pretty good the rest of the day until supper time. We were at the Universal City Walkway, which was a couple blocks away from our hotel. I was having a blast and even made sure to take my meds before going there. I didn't want to take any chances on having a flare-up during that time because I wanted to enjoy my time in LA, with all of the great people I was with. So, we explored the City Walkway, it was so beautiful and colorful. There were lights shining everywhere. I had thought to myself why we hadn't gone there sooner. But it was also only the second night we were there. When we finally picked a place to eat, that is when I started to not feel good. I got so nauseous and could feel my body just rejecting itself, I was starting to shake but not enough for others to notice. I tried to hold out and just sat there in silence wondering if my symptoms would ease up or get worse. They continued to get worse. I thought to myself if I see any food that I would probably puke. That is when I decided to go to the bathroom; I tried to breath through it, calm my sympathetic nervous system down...it didn't work. I called my mom, she didn't answer. Then my friend came into the bathroom asking if I was ok. I am like, "not really." I tried my hardest to explain to to her what was going on. Then my mom called me back and I told her what was happening and I asked her if I should go to the ER just to feel better, so I don't have to go through another night of hell. And when I usually go into the ER after/during a bad flare-up it helps me feel better and almost symptom free for the next couple of days, so I figured that since I wasn't going home anytime soon that I would just go in and my mom agreed. I felt good enough to walk the couple blocks back to the hotel where we would meet up with the faculty advisor/professor that went on the trip with us. Although, my friend did help me walk as I put my arm around her and I just vented about my life with POTS. By the time we got to the hotel my symptoms were obviously worse and I was dizzy. We got a taxi and went to an ER. I don't even know where it was or the name of it other than it was called Saint-something. I was so brain fogged, I had a hard time filling out the information when I got there. We had a long wait, I don't even know how long, my sense of time was distorted in so many ways. The two hour time difference, and just being completely out of it. I honestly thought I was going to pass out because the lady took forever just to get me 'checked-in' and I felt like I was standing forever. I think it took a couple hours of waiting, doing an EKG, and finally getting a wheelchair before I actually got my own room to get meds and IV saline solution. I needed a wheelchair because I was not only dizzy and lightheaded but my feet and legs were so cramped, weak, swollen and blood was pooling in my feet. I got my IV saline solution, some anti-nausea meds and they gave me morphine for the pain. Which in all honesty, I was grateful for but thought it was odd. I am glad that I got it because my pain got so much better. I was having bad body tremors throughout the entire time I was there but they were not always noticeable. When they were noticeable I had my friend record them just to show people what they look like. Then after about an hour of getting meds and feeling better, finally. I was discharged and just felt exhausted and tired. I was still a little shaky but that was ok. I just wanted to get some sleep. I got back to the hotel and took a bath to relax a little bit more before I went to bed. Then, I went to bed and slept so well...it was kind of amazing. Then the next day I took like two cat naps and felt like 100% that night. And we all ended up going out and having a blast!!

Since this post is so long, I will write two separate posts going into the detail of the asshole ER doctor that I had and how thankful I am for my friend Rikka and the faculty/professor David for everything that they did for me.

It is weird but that is just life

I appreciate those who ask me about my health. Maybe not frequently, that can get annoying. But if I haven't seen someone in awhile and they ask me about my health, I appreciate it. It makes me feel like they truly care about me and my sanity. It is hard living with something that feels like it is sort of slowly taking over your life. No matter how hard I try to take care of myself and control my symptoms. Last week, I met with one of my advisors/professors and she ask me almost immediately how my health was. I was like thinking to myself, "ok. That was fast. Let's just get this over with. I guess." I found it odd. Then I felt like I wasn't alone and professors actually care. Even though, I don't know why they truly do care. Honestly, every time I have a conversation with someone I will be wondering when they will ask me and how they will react what I will say. It is weird. But that is just my life now. I guess. I can't control those thoughts.

Dear (insert how I know you here),

I write this to explain myself and why I do the things I do and how this illness has changed my life.

Walking: Wow, you noticed I walk slower. Thanks (sarcasm, if you didn't notice). Yes, I walk slow, sometimes. If I am walking slower it is because my legs feel really weak. My legs can feel so weak sometimes that I feel like they are just going to give out. I also walk slower because I get really bad cramps and muscle spasms in my feet, legs, and hips. I also get joint pain in my hips and knees. Yes, that is POTS. I have already been tested for everything else. POTS is a weird disorder than affects pretty much everything. I can also be walking slower because I could be feeling dizzy, off-balance, or lightheaded.The last reason, is because if I walk to fast it can cause dizziness, lightheartedness, off-balance, and shortness of breath. Thanks for pointing out how slow I walk it makes me feel great. Not really, I hate it. I like it when a person asks me if I am ok, because they notice this. If you ask me how I am doing, that means that I probably didn't even notice how bad I am doing. It has happened before.

Stairs: One of my worst enemies, is the stairs. I usually have weak legs or just weak everything and that is one of the reasons I avoid the stairs. I also avoid them because I get dizzy, lightheaded, out of breath, and tachycardia when I take the stairs. The worst part about the stairs is that they can cause a flare-up for me. And those are really bad. I don't want that, nobody wants that. But sometimes I feel compelled to take the stairs to strengthen my legs.

Quietness: You noticed that I am quiet. Ok, yeah I probably feel like shit. I am probably in the middle of a flare-up and don't even want to tell anyone. I will probably leave to "go to the bathroom" is what I will tell you, but actually I am going to go try to catch my breath, cry a little, and tell myself that I can handle this in public, when I really can't and need to go lay down somewhere. Another reason I am quiet is because I am tired as fuck, like seriously this fatigue and physical exhaustion is terrible. It gets worse by the day.

Deep Breaths: You noticed that I am taking deep breaths otherwise known as sighs. Yeah, I am actually not feeling well and trying to catch my breath and normalize my heart rate and my sympathetic nervous system that is freaking out this very second. Or I just got done walking a long distance or up the stairs and I am actually trying to catch my breath, not because I am out of shape but because my autonomic nervous system is not working properly and is never working properly so it affects my breathing.

"Bathroom breaks/leaving the room at all:" A lot of the time when I say I am going to go to the bathroom, it actually means I am going to use the bathroom for its intended purposes of using the toilet. And I do use the bathroom a lot because of how much water I am supposed to drink. Another part of POTS is that my body doesn't retain water like it is supposed, therefore, I have to pee a lot. But sometimes if I am leaving the room it will be because I am having a flare-up and need to "group myself" which means I need to take deep breaths, sit down, and lie to myself by saying "you will get through this just like all the other times."

It is ok to ask if I am not feeling well. I will be honest. And honestly I probably won't be feeling well because that is how my POTS has been lately. It hasn't been treating me well.

My battles...my hope

There are days when I question whether or not I can put up with my body's pain and the way it malfunctions on me. I am all alone, staring at a blinking cursor thinking to myself why do I keep fighting? And I get another pain but this time it disfigures the shape of my foot. It isn't supposed to look or feel like that. I try to "walk it off" but that just makes it worse. It won't go back to normal. Not only won't the pain go away but the disfigured foot just keeps staring back at me and I fall to the ground and sob. I sob like a fighter who has had enough. But this is just another battle. This illness is mine and only mine. I am the only person that will battle it, day-in and day-out. And when the pain finally goes away and my foot goes back to normalcy, I find myself still sobbing and still asking why? Then I remember laughter. I remember the joy of my family and friends. And the excitement of feeling so proud of my little brother and his career in wrestling and how I got to watch him win a medal. I got to see him smile that big beautiful, hopeful smile, with his medal close to his strong healthy beating heart. I have the privilege to look at my mothers elegant smile and remember the support and love that she has given me since the day I was born. Even when I am feeling so alone and frightened for the future.  I still have hope. There smiles give me hope and that is all that I need. It is hope.

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