Wednesday, February 2, 2011

I'm Not Done Yet.

First things first - I'm not done yet. Not with life. Not with soccer. Not with anything.This is my humble (veeeeeery humble) attempt to start a blog about being an athlete with Postural Orthostatic Tachycardia Syndrome (POTS). I'll be honest, it's more for my sake than for anything else. I need a place to vent, to think, to rejoice. If somebody else happens to read this, whether it be because they are also an athlete dealing with POTS or because they just think that I'm funny when I write, then so be it. I also started this blog because there's nothing else out there for me as an athlete. Apparently, or at least according to YouTube and Google, being able to continue in athletics is a rare thing for people who have POTS (maybe that has something to with POTS causing exercise intolerance...hhhmmmm...nah it couldn't possibly be that...right?). I can get plenty of info about POTS. I can get people complaining about POTS. I can get videos of people whose lives have changed dramatically since they were diagnosed with POTS. But there isn't really anything out there for people who are trying to live a normal, full life with POTS, much less for those who are attempting to be elite athletes with POTS.

Let's face it. Go to Youtube and type in POTS. No really, open up another tab and do it. This is what I'm dealing with here. You'll get the super awesome guy from the Mayo Clinic talking about what POTS is, you'll get a bunch of amatuer videos trying to do the same thing, and then you'll get a bunch of people sitting in front of a web cam talking about how they're having a bad day. If you're really lucky, perhaps you'll find one of those crazy super depressing videos about how debilitating it is to have POTS. You'll know what I'm talking about when you find it. There will be a random Sarah McLaughlin song playing in the background (one which inevitably has NOTHING to do with being sick...or getting better...or having hope. They just freaking want to make you jump off the cliff of despair and into the abysmal sea of epic self loathing.). There will be sad pictures of crying puppies and dying unicorns, over which completely inane sentences will appear in handwritten font (like this is supposed to make it more personal or something. For crying out loud, we all know it's just a font. I have it on my computer,too. I don't feel more sad because it looks like you hand wrote it. Actually, I don't feel more sad because I started bawling five pictures back when that starving kid from Rwanda, who had nothing to do with pots, came rollin' across the screen.) telling you about how god-aweful POTS is, and how nobody cares about this debilitating "invisible sickness." You feel me? See how much stuff I have to put up with from other people with POTS? You'd think I was dying (which I'm not) or giving up on life (which I'm DEFINITELY not).

This is not the kind of stuff "potsies" need. First of all, I don't want your freaking pity, nor do I need it. Get up and do what I do as a Division 1 soccer player every day, and then come pity me. I am living a dream life, even if POTS is messing with it a bit. I get free clothes and gear, I won't come out of college with a ton of debt, and I get to play the game that I love every day that my body allows me. Don't pity me because I don't feel like I should be pitying myself. Second, we need stuff that gives us a reason to get up every morning. I know that POTS sucks some days, don't remind me with your stupid video or complain about it with your stupid blog (yes I fully understand the irony of blogging about the stupidity of someone else's blog. Deal with it. Better yet, go blog about how you hate my blog, and then we can start a blog war. I'll destroy you.). I mean, yeah, some days it's good to know that I'm not the only one dealing with this stuff, that someone somewhere else (often times somewhere so far away from me that it doesn't matter and that they don't give an polar bear in the north pole about me) knows how I feel. yaaaaay. let's all go hug a teddy bear together. No really go hug a freaking teddy bear. You don't make me feel better. You don't even make YOU feel better. So stop it. What we need are success stories. We need role models who are fighting ( yeah, that word...ya know, the one that means not giving up and doing the hard things even when you don't want to) to get their lives back. We need hope. Hope that we can have a future that isn't restricted by some invisible illness. Hope that we have a chance of living a full and normal life. Hope that we can take this thing head on and beat it. You can make me a sad video when I'm dead.

My hope is that this can turn into a forum for us "potsies" to share our victories, no matter how small or seemingly insignificant. Yes, it will be geared toward athletes with POTS, but not limited to them. Every time you fight your way out of bed in the morning, you win. Every time you make it through practice/school/work, you win. Every time you make a conscious decision to live your life with joy, with love, and without complaints, you win. And when you win, we all win, because we all need a reason to believe.

My name is Amy Swearer, and POTS stole my life. I'm taking it back.

18 comments:

  1. My daughter is also a Div 1 soccer athlete with POTS, diagnosed in Feb 2012. How are you doing? Has anything helped you? I'd post more but not sure how many can view.

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  2. Ha! I spent the last year giving up on this blog because I thought I was the only one! I'd love to answer questions, and if you're worried about public comments, you can feel free to email me at amyswearer@yahoo.com.

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  3. I am a Junior in high school and a varsity volleyball player. I was just diagnosed with POTS and Autonomic Dysfunction, and it is doing its best to steal my life. Your blog gives me hope that I can find a way to keep playing. Any tried and true suggestions for training without passing out? I struggle with nausea and vomiting too, and wondered if you had any ideas for keeping fluids on board.

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  4. Hi Paige! Would you mind emailing me at amyswearer@yahoo.com? I've found it's much easier to pass along information that way without having it spilled all over the internet publicly. I'd love to help you out with suggestions. Hope to hear from you soon!

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  5. Hello, my daughter is a DI field hockey player. She is currently a senior and was diagnosed two years ago. POTS has stolen a lot from her but, I thanks God every day for her sport. It has given her a quality if life she would not have had otherwise. Yes, she has to work twice as hard as her counterparts to get the same results, that stinking parasympathetic nervous system plays havoc with core workouts, but she is a vibrant, student athlete! Thanks for te blog!!

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    1. Hi Gwyn! Glad to hear of another athlete out there pushing her way through this thing! If you or your daughter ever want to chat about POTS,sports, or anything else, my email is amyswearer@yahoo.com and I'd love to hear updates from either of you about how she's doing!

      Blessings,

      Amy

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  6. Hi Amy, my daughter is a sophomore in HS and was recently diagnosed. She has been a competitive swimmer since she was 7 years old and is beginning her pre-season workouts this week. Any advice you can pass along would be appreciated. Particularly interested in any information on accommodations to practice schedule and how to deal with frustration of getting back to where you were prior to illness. Thanks and I hope you keep up your blog! Erica

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    1. Hi Erica! I'd love to help you out in any way that I can, but could you do me a favor and email me at amyswearer@yahoo.com? I've just found that it's much easier to carry on conversations through email than over the comments section...there's much more privacy that way, as well. Hope to hear from you soon!

      Blessings,

      Amy

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  7. Hi Amy,
    My daughter was diagnosed in the 8th grade with Neurocardiogenic Syncope. When I read all of the "POTS" blogs, it definitely sounds like she fits that dx but everything you read is so depressing. The cardiologist that dx her did not mention POTS. She has been really struggling for the last few years. She gave up tennis and track her 8th grade year, now basketball, but is still hanging on to fast-pitch softball. The workouts can make her really sick. She has great days, bad days and horrible days. Fun nights like dancing for hours with her friends can completely wipe her out. I will email you. I need more information and she needs someone who understands and can give her hope. Thanks for creating this blog. She needs it.

    Jen

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  8. Amy
    You are fortunate to be young. I am 64 years old and have been on my bike for 31 years almost every day. In February I had a terrible bout of the flu. Several weeks later I realized it was becoming difficult to ride comfortably. Realized that just getting on the bike would cause my resting pulse of 52 to jump to 100 without even beginning my ride. Had low pressure 100/50 for years due to my fitness not any dysfunction. To make a long story short now when I stand my pulse increases 35-60 beats and my bp will drop to 83/63 or lower.

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    1. Jay part 2. Six weeks have elapsed and I can only stand for about 20 minutes before sitting down. I've Lost all of my 30 years of conditioning. Six months ago I was riding 125 miles a week with cyclists half my age. It is now difficult to try to walk for 10 minutes at a time. My pots hit me full on and literally crippled me physically and emotionally. I can only relate to the YouTube posts and other info on the web.your situation does not reflect the people whose lives have changed overnight. Hope you continue to be an athlete for as long as you choose. I chose the rest of my life but sometimes things don't work out as we wish.
      Jay

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  9. (I am not a physician and I take no responsibility for any advice i may give).Hey there. Still paying attention ? I'm from germany and used to be an athlete than i got pots you know the rest. However I have been trying few ways to get back on the wagon, though i found running impossible (at first), or riding a bike, I noticed that when i got into the pool my pots was gone. I couldn't believe it usually my heart rate was 125 just standing and now in the water it was 70 or even lower. I started swimming and not only could i do laps, but i noticed that AFTER my swimming seesions for nearly 3 houres my pots was gone. I could walk up the stairs with my heart rate only hitting 130 max (compared to 160 before). My standing heart rate was 75-90. I felt calm and relaxed. this is my second month of going swimming every day religiously. I lost 10 pounds by now and am toning up again. My pots isn't gone but it is much much better. I used to be a not leaving my house case. I stayed in bed for 10 houres during the day and now I am walking outside and living my life again only after 2 months. So what is so special about swimming one might ask ? It has something to do with the "diving reflex" that all mamals have. The diving reflex kicks in when your head is under water. It is an automatic reflex that cuts the bloodsupply to your extremities and pumps it into your lungs and heart thus rducing your heart rate dramatically. Since with Pots the Problem is the pooling of blood in your legs this gets rid of this problem and helps the heart work more effeciently. If you have any questions just ask greetings from germany.

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  10. Hi Amy,

    I play division 2 soccer in college as well. I was diagnosed with POTS in January of this year. It has taken me out of practice and games. It's been tough on me, but I am doing everything I can to get back on the field. How are you managing playing with POTS? Any advice you could give would be great. Thanks

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  11. I am a D3 college hockey player who was recently diagnosed with POTS.(I am 20) My resting heart rate is your typical low athlete one at 50. I have been fainting for the past 5 months now sometimes once a week sometimes 5 times a week.The doctors put a monitor on me and just standing my heart rate was going from 50 up to 160 doing nothing. My blood pressure drops in increments of 20 and I feel so sick after. It's comforting to see I am not alone. POTS makes it impossible for me to walk from my house to the car without almost falling over, again I am an athlete in very good shape, making all of this so frustrating. I was recently put on beta blockers which are now bringing my HR down to the low 40's which is not good. Any suggestions with the beta blockers?

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  12. My seventeen year old son was recently diagnosed with EDS Type III and POTS after six years of misdiagnosis. He has seizures due to the pooling of blood in his hands ad feet; they told us his seizures were psychological. He's a fighter. Although he misses a lot of school, he is still working towards an advance diploma, he is an SCA officer, plays HS volleyball, and is being recruited by sevetal DII and DIII schools for lacrosse- he's a goalie. He has it tough, but somehow kerps pushing himself. I am afraid that someday he will lose his fight and give up. Thank you for this blog. It is inspirational instead of gloomy like the other blogs and websites I've seen. I am going to share this with him and I hope he choses to share his own story with you.

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  13. My 15 year old daughter was diagnosed with POTS last month. She is also a competitive swimmer and if Erica still reads this blog I would love to talk to you. I would like to hear your insights into swimming with POTS because my although my daughter is still competing, the struggles she deals with are growing. There are days like today where she can participate in the entire practice with minimal breaks and days where 5 minutes in the water is torture. Any advice?

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  14. Hey !
    My name is Laura and I am from Romania. I am an athelte, I practice martial arts and also a trainer in the same field. Sport is my life and I can't see myself without it. My nightmare begun after a misscariage, I lost my baby gir, she wasm born dead. From that point i begun to have problems with my hear rate and panic attacks. I took some pills for that but soon I found out that when I stand my Bp is low and my pulse is sometimes 120...and just after walking 140. While sitting it hits 55 sometimes. In my country doctors don't beleive in Pots...and they say I am crazy or that I have panic attacks. Is very hard to fight with something that you don't know...but I do my best, I try to work out and hope to make it, I would also like to have another baby. I hope you all are ok and wish you the best !

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  15. Hi. I know this has been several years since your original post, but I thought I would try anyway. My 16-year-old daughter saw recently diagnosed with POTS. She is a year round student athlete running cross country, playing basketball, and also playing softball. She is a very determined young lady to continue her sports as well as continue her dream of becoming a pediatrician but now specializing in neurology. Any great pointers you have we would appreciate.

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