Category Archives: Postural Orthostatic Tachycardia Syndrome

11 Ways to Show What it’s Like to Live with a Chronic Illness

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Do you really want to know what it’s like to have a chronic illness? No sugar-coating? Okay, let me tell you.

  1. The amount of pills I had to take today to just get by? 27 pills. No, they aren’t pills that make you high. That’s how many I have to take to even make it to my so-called normal. I am not a druggie.
  2. When was the last time I did my yoga (the exercise I love so much)? I can’t tell you. Between my energy levels and having procedures, it’s been a while. I made it up to a headstand before I had to stop doing yoga. No, it’s not just something that I can push through. It’s either spend my energy on yoga and relax the whole day or take care of my husband, child, and our home.
  3. When was the last time I didn’t have to take a break when walking up or down stairs? That’s a good question.
  4. Why is it hard for people to believe that I’m sick? I try to hide it as much as possible. It’s gotten to where I can fool everyone but my husband. If I let people see how I feel, who would want to be around me?
  5. Those looks you get when you have to use a cane and park in a handicapped space? Yeah, those are lovely. I’m 25 and sometimes move slower than someone who is 50 years older than me.
  6. I sometimes have to sit or lay down in a grocery isle when I go grocery shopping. I promise, I’m not that kookoo for cocoa puffs to randomly lay in a store.
  7. Sometimes I have to run-ish to the bathroom really quickly at the store, because my colon picked a very convenient time to try to finally empty itself. Why is it always at the store?
  8. Pre-syncope (almost fainting, but not quite) happens all the time. I think full on fainting feels better than the almost fainting.
  9. I could barely move the last time we took our son to the zoo.
  10. My husband doesn’t want to go see different places, because he knows I’m going to get tired and have to just rest for who knows how many days afterward.
  11. Because of a feminine problem and fibromyalgia and neuropathy, I’m in pain all the time. Here’s the kicker, even morphine given through an IV doesn’t affect me.

But I still fight to be there for my husband and son. I take care of my son, because I take care of myself. It’s so hard some days, but it’s so worth it. Who said life on earth would be easy? Life is work and life is hard, deal with it. We all have a cross to carry, and this is mine. A lot of people with illnesses milk it, but most of us don’t and won’t do it. I don’t need your sympathy, I need your understanding that sometimes I just can’t do things. You don’t need to know everything wrong with me, just know that I need a rest sometimes. I cannot do it all.

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Allergic to Gravity

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Allergic to gravity – it’s one of the simplest ways that I can explain my type of Dysautonomia. Yep, I still have it. It’s still there like acne for me, it just won’t go away. Isn’t that nice? Well, I decided to write a list of some funny things about this illness. So, here you go.

  1. We are allergic to gravity. Seriously. Gravity hates us. It just pulls us down.
  2. We can salt it up, dudes. Yep, the more salt the better. Yet McDonald’s never seem to get that I’m serious when I ask for the salt packets. It wouldn’t be so bad if they actually salted their fries. That’s why I get the food in the first place. (I mean, c’mon. Is it really so hard to get salty french fries when I pay for them? These people.)
  3. We’re so talented we can wake up with a hangover without even drinking. It’s awesome opossum.
  4. We’re so lazy that we can fall down on the floor as soon as we get out of bed. Sleep is a priority after all. Who needs life when you can just lay on the ground?
  5. We can’t really go on roller coasters, but we at least get the sensation in the car. Say what?
  6. We usually get to have so many other medical problems with Dysautonomia. The more the merrier, right?
  7. We’re running a marathon inside our bodies all the time without the added benefits of actually running a marathon. It’s so great.
  8. We drink so much water that we might as well be mermaids….just hopefully a bit more clothed.
  9. We take so much medicine we should at least all be honorary pharmacy technicians. I’m just sayin’.
  10. We have to go through so many procedures and med trials and side effects that we should have our own comedy show. I know I get even more goofy with certain things. And dizzy. Really dizzy. Hey! How did that wall get there?
  11. Automated blood pressure machines have nothing on us. Our vitals change so quickly and are so odd that the machines won’t register them. Now that’s talent.

What other things can you think of to go on this list, my fellow heartbeaters?

What I Love About Yoga

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I began doing yoga towards the end of January. If you had asked me a year ago what I thought about yoga, I would have told you that I thought it was just a bunch of people doing silly stretches. I even used to make fun of my brother for doing yoga (sorry, bro). I’m eating my words. Honestly, I would probably not be in such a centered state if it wasn’t for yoga. Yoga has helped me in so many ways. Listed below are some things about yoga that I love.

  • It really is a workout. No, seriously. I’m getting back into shape from it. Awesome stuff, man. My POTS is pretty cool with it, too.
  • It’s helped me to let go of a lot of things, such as: my constant thoughts of what people would think of me while I’m doing these odd stretches or how I must look so weird. Who cares? It’s yoga. Don’t lose your sanity over speculating what people may be saying or thinking about you.
  • Even though I get to stare at my ugly feet a lot, them being ugly doesn’t bother me anymore. I love my hobbit feet (well, they’re not that hairy).
  • You don’t have to own a pair of yoga pants to do yoga. Thank goodness. I have never done a single yoga practice in yoga attire. However, the one pair of those pants I do own are like sweatpants to me. You best believe I rock them sweatpants. But at home. Not outside, at home. Not as every day wear, but as I-don’t-give-a-crap-I’m-just-sitting-on-my-couch wear.
  • There’s no judging in yoga. So your crow pose isn’t pretty. At least you can rock that savasana. You go, girl. Go ahead and fall asleep while you relax that awesome body of yours.
  • There’s no competition. There’s no pressure to feel like you have to do certain things. You go as far as you want to go. End of story.
  • You let go of fear. Whatever your fear may be, you can conquer it. I’m just happy I can do a headstand now. I was always afraid of breaking my neck. But look at me, with my neck not broken and stuff.
  • You learn how to center/ground yourself. It helps a lot with anxiety. True story.
  • You have to relax. For someone like me, that’s tough. “You mean I just have to lay here and basically go to sleep?” Man, I love that savasana. It’s my favorite.
  • One of my favorite yoga instructors (Kathryn Budig) says that if you’re not smiling, then you’re taking it too seriously. Sure, I would like to just hit her with a foamy baseball bat when I’m trying to do some of those poses like alternately lifting up each leg in dolphin pose and upward bow pose, but she’s right. (Insert mumbling about how I’d like to find a foam bat here.)
  • Yoga is really for anyone. Of course, you always need to clear it with your doc before you start anything. However, here I am with several autoimmune diseases and disorders, but I can do yoga. I can’t do yoga every day, but I do it when I can. It’s important to keep moving forward no matter the struggle.
  • Here’s a TMI part (you’ve been warned): I can poop. Yoga helps me poop. I have tried everything you can think of to go, but nothing ever worked-even at my healthiest. But yoga can take care of you so well in that aspect. That tension is gone, dude. Relief is a wonderful thing.

Here is a picture of me doing crow pose when I was just starting to be able to do it a little over a month ago:

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What do you love about yoga?

Back in Town

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Finally, I’m back home. Well, I got home the night before Thanksgiving, but I’ve been spending time with my husband and the Traitor, as well as trying to recuperate from the traveling. The trip went okay, I won’t know what the Air Force decides for a while. All I have to say about flying is… thank you for midodrine, Heavenly Father! If it wasn’t for midodrine, I don’t know how I would have made it. I will post a few posts about the trip and my son soon, but I just wanted to touch base with you guys. I would like to read all of the blog posts I missed while I was gone, but there are literally too many for me to read at the moment.

I hope you guys had a great Thanksgiving! Soon I will post a cheap and easy Thanksgiving Day/Christmas Day meal. Take care!

Dysaotonomia Awareness Month

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I know that October is Breast Cancer Awareness Month, but is also an awareness month for a few other things. The one that I am personally attached to is Dysautonomia Awareness Month. P.O.T.S. is like a type of dysautonomia (malfunction of the autonomic nervous system). Please support Dysautonomia Awareness by posting this banner! Thank you!

Pregnant with P.O.T.S.

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Being pregnant in general is very exhausting and it is work. Now throw something in as life changing as P.O.T.S. and you are in for a ride. My husband and I had wanted to wait for a while before we had children in order to give me some time to see if I would get better and have a surgery that could have possibly helped me, but my son was a complete surprise. In fact, when I found out I was pregnant, I was just using a box of pregnancy tests before I threw them away. I had no inclination of being with child, but each pregnancy test I took came up quickly positive every single time. So shocking.

As soon as I found out I was pregnant, I stopped taking my meds for P.O.T.S. However, even though I tried not being on any medication, that simply wasn’t happening. I had to take my medicine throughout my entire pregnancy and still had problems. At one point, my son was in danger of being taken out around 31 or 32 weeks pregnant because of him seemingly being affected by the medicine I was on. Thankfully, and only by the grace of God, my son beat the odds that were against him. He was still undersized for a while, all the way up until a month before I had him. He started getting around the normal growth stages and then surpassing them.

Labor was something I was dreading, but not for the usual reasons. I didn’t really care about all the pain that was about to come my way, I was more worried about being able to give birth to my son without any complications, such as fainting. At first, I wanted a cesarean section, or C-section, birth. But, my doctor helped me to see that it was probably going to be safer to give birth through vaginal delivery. When the day came to be medically induced (to read about that adventure read my other post titled Football and Birthing a Baby) at 39 weeks, I was extremely scared. Even though my husband doesn’t see how he helped me by being there, if it wasn’t for him, I don’t know how I could have gone through it without freaking the crap out. The staff at the hospital had me lay on one of my sides, because my vitals would only be in an okay range by laying on my side.

When I got to 6 cm dilated, I was able to receive an epidural. The anesthesiologist that did the epidural stayed with me for a couple of hours to make sure nothing bad happened. Normally, the anesthesiologists at the hospital I went to don’t stay with the mom. Later on in the evening, it was time to push. I did have a little issue here. They had to give me oxygen while I was pushing, because I wasn’t getting enough in my system. My baby’s head was crowning, his cord was wrapped around his neck a couple of times, and I thought my body was about to give up. He wound up being delivered with a vacuum to suction him out of me.

The breastfeeding lady at the hospital wanted me to breastfeed my baby. However, after doing some research online about my medicines being transferred through breast milk and after the scare of him being so far behind before in the womb, I decided to formula feed him. I did not want the medicines I had to take being in his system anymore, and I needed the medicines to be better able to take care of him. My baby was and is fine. The only thing that is wrong with him is some stomach problems. He does take medicine to help with his reflux, but it is not uncommon for babies to have these issues.

After all of that, he was fine and I was fine (all things considered). My P.O.T.S. did begin to get worse, but I am on medications, a special diet, and an exercise program to help with it. It is hard being a mom with P.O.T.S., but it is doable. If you want to get pregnant and have P.O.T.S. and have any questions that I could help you with, or you would like to just have someone to talk to about this stuff that has gone through it, please let me know. I’m here to help!

Living with P.O.T.S.

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Your heart is pounding. You can feel it with your hand. You can hear it in your head. Your whole world is going black. Then nothing. You have fainted all because you stood up. Life with P.O.T.S. is no easy task. Postural Orthostatic Tachycardia Syndrome is an autonomic nervous system disorder that can pop up anywhere and at anytime. A car wreck could cause it, an infection could cause it, being pregnant could cause it, growing could cause it (teenagers), or (as is the case with me) you can have no known cause of why this happened to you. It can pop out of nowhere. Or it could start over a period of time and take decades for doctors to figure out that you have P.O.T.S. and still not even know what to do to help you (it took me moving to another state and finding a cardiologist experienced with this to get my medications settled).

Many people won’t believe you, I’ve even talked with someone before whose own spouse didn’t believe she had anything wrong. People will stop liking you, won’t believe you, think you’re faking it. I had someone I once worked for tell me that he thought I was psychosomatic (I wanted to be sick like that so badly that my body made it happen), yes, because I had so much knowledge of this before it happened and I want to feel like crap all the time. Not. Your own family could have problems believing you or accepting the fact that this may be around for your whole life and that there is no cure. Stuff happens. Several people can have a hard time believing in something that is somewhat rare and not well-known, at least in the U.S.A.

Some people with P.O.T.S. have low blood pressure, some have high blood pressure. You will most likely have a high heart rate (like 150bpm while just sitting down). You can have aches and pains with P.O.T.S. The common factor with people with P.O.T.S. is fainting or near fainting. You can have good days or bad days. You get tired more easily, and it is very hard to find friends that understand this. You can have difficulty even being in a car. Thankfully, I have an awesome husband and a few awesome friends that understand this and have helped me through it, especially my friend, Caitlin. She has picked me off the floor and taken me to the hospital more times than I can count (I have a slight tendency to hit my head on stuff when I pass out).

Thankfully, many people can manage their symptoms with the correct combinations of medicine, increasing salt intake, and drinking a lot of water. It may take a while to find how much you need to take of certain things and it could change over time. Even when you find a good medicine combination for you, it is still a daily battle. You have to plan ahead before you can go anywhere. Sadly, some are not so lucky. Some people, in combination with other health complications, pass away. Many of them very young women (P.O.T.S. seems to hit women more than men).

It isn’t easy to live with P.O.T.S., but you learn to live with it. You learn to accept it. What other choice do you have?

To better understand the energy level of someone with P.O.T.S. go here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ . For more information on P.O.T.S. http://www.dinet.org/pots_an_overview.htm ; http://www.youtube.com/watch?v=ltiiBysokUE