Sorry I've been MIA, I've been finishing up school and that's been taking a lot away from my free time! I'll be done in the next few weeks, so expect more post's during the summer time! I know all my POTS buddies (that's what I'm gonna call y'all :D lol ) like to hear about what other people are going through, as do I, so I'm gonna try my best to keep in touch through here and see if I can help anyone out or if anyone can help me lol! Also, If anyone suffering from POTS or CFS wants to chat leave a comment and I'll be sure to get back to you, and we can be email buddies! haha.
Overall, I've been okay. April 30 I was able to go to my Junior prom, which was a blast! I had loads of fun, even though I was pretty tired out the rest of the week. That was my last big event, and lately I've had school and some friend problems ( No fun!). But I feel like I've been doing much better managing my fatigue, although I'm still trying to get myself into better eating habits! I have been exercising more too, which seems to be a big help with my moods and energy.
Hoping all is well for everyone! Have a lovely night!
xx Kristen
Wednesday, June 1, 2011
Saturday, April 16, 2011
so.
I've really been neglecting this blog lately. It's just I never know what to talk about. I hate whining and I feel like that's all I'd ever do. Though I have been feeling better the past few days. A week ago I thought I was close to dying(I may be a bit dramatic :P ). I felt awful, just completely exhausted and sick. I've been trying to take vitamins daily now to keep my body together. I think that's what's been helping because I really need the vitamins because I have awful eating habits. I either don't each much throughout the day and then pick during the night or all I want is junk food. Not good. I really need to start buckling down on myself and start eating better. The only way I'm gonna help myself to get better is to do the right things for myself, I just have to start doing that.
And as I'm saying that its 1:31AM. I should be sleeping, so I guess I'll do that. :)
xoxo Night
And as I'm saying that its 1:31AM. I should be sleeping, so I guess I'll do that. :)
xoxo Night
Tuesday, March 15, 2011
What is P.O.T.S?
P.O.T.S ?
The first time I heard the term P.O.T.S, to me it sounded like some kind of horrific disease. Little did I know that soon after I would be diagnosed with just that.
P.O.T.S is short term for Postural Orthostatic Tachycardia Syndrome. If your reaction was anything like mine, I was like "huh?". I had no idea what that meant nor did I think I would be able to repeat it, it was a mouth-full.
It is a condition of Orthostatic Intolerance. Which is a disorder of the autonomic nervous system that occurs when a person stands up. It also creates a very large increase in heart rate (tachycardia), more than 30 more beats per minute than the average person.
When a person with P.O.T.S stands up or changes positions, more blood flow goes to the lower regions of the body, so the heart and brain do not get enough blood, resulting in the person having a dizzy spell, blackouts, vertigo, or even passing out. It can also occur when you are doing any activity that requires your hands to be moving up, held up, or above your head.
The severity of each persons symptoms ranges. Luckily for me, I rarely pass out, but do get light headed when standing or getting up. Some people can have debilitating symptoms.
Laura Hillenbrand, the Author of "Seabiscuit: An American Legend" has such a severe form of Postural Orthostatic Tachycardia syndrome that she actually wrote the entire book in bed!
There isn't a known cause of P.O.T.S rather several theories. One of the main theories is that it is caused from having a viral or bacterial infection such as mononucleosis. Which is how they believe I got P.O.T.S.
Finally, there isn't one set treatment. I see a specialist that uses different medications to help combat each specific symptom I get, so It would be different for every patient. Overall each treatment depends on the severity and symptoms of each individual patient.
More on me, the author and creator of this blog(Kristen):
I was diagnosed in October 2010 after months of confusion, research, and people not believing me. I finally had a name for the way I had been feeling since March 2010. More then six months I went through fighting the school system for help because I wasn't able to attend school, People I believed were friends who were calling me lazy and talking behind my back, and everyone at school who had no clue why I had just left out of nowhere, and dumb rumors.
I created this blog for those that are in the situation I was, and am still going through. I want everyone to know that You are not alone! It's very hard and to be frank it really sucks, but take my word, it will get better. I have grown so much from my time and experience with P.O.T.S and it has made me so much more aware and understanding of not only myself, but people and the world.
I have lost friends, but I have also gained people in my life that I can call family. I've learned who is really along for the ride and who was just on for a few minutes.
It is true that something great can come out of an awful situation. You just have to hold on tight, and believe there's no other way but up from here.
My Journey
For me, Chronic Fatigue has also been apart of my syndrome. It is exactly what it sounds like, extreme and chronic fatigue. I usually spend a lot of time sleeping, and a lot of time awake tired. It's awful feeling so exhausted after hours of sleep or not being able to sleep at night because I slept in during day time hours.
I've had people tell me "Then go to bed earlier" or "Just force yourself to get up and get going its not that hard" and to be honest it is extremely difficult. That's why this blog is named "Blaming the invisible man" because I feel as though people don't believe that I have this, or that I am trying to make it seem more severe than it really is. Its really as complicated to deal with as it is to understand. And I don't expect everyone to understand it, but at least try to.
I'm blessed I haven't been completely bedridden, but I also don't get to be a normal Teenager. So far, of the 2010-2011 school year, I have had home teaching. It is different then home-schooling, in that I get a home teacher to come to my house for the allotted time each week to teach me what is going on in school, all information is provided by my school teachers.
Home teaching is given to individuals who cannot attend full time schooling due to any medical reason. I was attending school everyday for half a day, but I then stopped all together because it became too difficult.
I'm hoping to be back sometime before the end of the year, but It depends on how I'm managing. As great as Home teaching has been, I miss school and my friends.
This is very socially debilitating as well. I have a hard time getting the energy I need to do normal activities such as hanging out with friends and having a sleep over. It's hard coming to terms with not being able to do things I used to take for granted.
Its been a very hard and long journey but I'm making my way through, trying to get to the finish line, waiting for my next chapter to begin.
The first time I heard the term P.O.T.S, to me it sounded like some kind of horrific disease. Little did I know that soon after I would be diagnosed with just that.
P.O.T.S is short term for Postural Orthostatic Tachycardia Syndrome. If your reaction was anything like mine, I was like "huh?". I had no idea what that meant nor did I think I would be able to repeat it, it was a mouth-full.
It is a condition of Orthostatic Intolerance. Which is a disorder of the autonomic nervous system that occurs when a person stands up. It also creates a very large increase in heart rate (tachycardia), more than 30 more beats per minute than the average person.
When a person with P.O.T.S stands up or changes positions, more blood flow goes to the lower regions of the body, so the heart and brain do not get enough blood, resulting in the person having a dizzy spell, blackouts, vertigo, or even passing out. It can also occur when you are doing any activity that requires your hands to be moving up, held up, or above your head.
The severity of each persons symptoms ranges. Luckily for me, I rarely pass out, but do get light headed when standing or getting up. Some people can have debilitating symptoms.
Laura Hillenbrand, the Author of "Seabiscuit: An American Legend" has such a severe form of Postural Orthostatic Tachycardia syndrome that she actually wrote the entire book in bed!
There isn't a known cause of P.O.T.S rather several theories. One of the main theories is that it is caused from having a viral or bacterial infection such as mononucleosis. Which is how they believe I got P.O.T.S.
Finally, there isn't one set treatment. I see a specialist that uses different medications to help combat each specific symptom I get, so It would be different for every patient. Overall each treatment depends on the severity and symptoms of each individual patient.
More on me, the author and creator of this blog(Kristen):
I was diagnosed in October 2010 after months of confusion, research, and people not believing me. I finally had a name for the way I had been feeling since March 2010. More then six months I went through fighting the school system for help because I wasn't able to attend school, People I believed were friends who were calling me lazy and talking behind my back, and everyone at school who had no clue why I had just left out of nowhere, and dumb rumors.
I created this blog for those that are in the situation I was, and am still going through. I want everyone to know that You are not alone! It's very hard and to be frank it really sucks, but take my word, it will get better. I have grown so much from my time and experience with P.O.T.S and it has made me so much more aware and understanding of not only myself, but people and the world.
I have lost friends, but I have also gained people in my life that I can call family. I've learned who is really along for the ride and who was just on for a few minutes.
It is true that something great can come out of an awful situation. You just have to hold on tight, and believe there's no other way but up from here.
My Journey
For me, Chronic Fatigue has also been apart of my syndrome. It is exactly what it sounds like, extreme and chronic fatigue. I usually spend a lot of time sleeping, and a lot of time awake tired. It's awful feeling so exhausted after hours of sleep or not being able to sleep at night because I slept in during day time hours.
I've had people tell me "Then go to bed earlier" or "Just force yourself to get up and get going its not that hard" and to be honest it is extremely difficult. That's why this blog is named "Blaming the invisible man" because I feel as though people don't believe that I have this, or that I am trying to make it seem more severe than it really is. Its really as complicated to deal with as it is to understand. And I don't expect everyone to understand it, but at least try to.
I'm blessed I haven't been completely bedridden, but I also don't get to be a normal Teenager. So far, of the 2010-2011 school year, I have had home teaching. It is different then home-schooling, in that I get a home teacher to come to my house for the allotted time each week to teach me what is going on in school, all information is provided by my school teachers.
Home teaching is given to individuals who cannot attend full time schooling due to any medical reason. I was attending school everyday for half a day, but I then stopped all together because it became too difficult.
I'm hoping to be back sometime before the end of the year, but It depends on how I'm managing. As great as Home teaching has been, I miss school and my friends.
This is very socially debilitating as well. I have a hard time getting the energy I need to do normal activities such as hanging out with friends and having a sleep over. It's hard coming to terms with not being able to do things I used to take for granted.
Its been a very hard and long journey but I'm making my way through, trying to get to the finish line, waiting for my next chapter to begin.
Monday, March 14, 2011
The First Post
Let me start of with introducing myself. Hi, I'm Kristen. 17 years old. I have never done anything like this before so bare with me. :)
I was Diagnosed with P.O.T.S(Postural Orthostatic Tachycardia Syndrome) and Chronic Fatigue syndrome in October 2010. I haven't found many online site with people my age to be able to relate to, so I decided I would make one myself. This is basically for me to get out my frustrastions and anything dealing with P.O.T.S and CFS, to help anyone else who is suffering from those to know YOU ARE NOT ALONE :), and anyone who doesn't know about either of these but maybe wants to learn a little more.
I can't promise I'm going to be good at blogging this, but I'm going to try. So stick with me and enjoy the ride.
Xo- Kristen.
BTW- I'll be updating shortly with the beginning of my journey, then I'm going to try for more frequent updates on my life, about me, about the illness' and just random help :)
I was Diagnosed with P.O.T.S(Postural Orthostatic Tachycardia Syndrome) and Chronic Fatigue syndrome in October 2010. I haven't found many online site with people my age to be able to relate to, so I decided I would make one myself. This is basically for me to get out my frustrastions and anything dealing with P.O.T.S and CFS, to help anyone else who is suffering from those to know YOU ARE NOT ALONE :), and anyone who doesn't know about either of these but maybe wants to learn a little more.
I can't promise I'm going to be good at blogging this, but I'm going to try. So stick with me and enjoy the ride.
Xo- Kristen.
BTW- I'll be updating shortly with the beginning of my journey, then I'm going to try for more frequent updates on my life, about me, about the illness' and just random help :)
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