At any given point during the day, someone is bound to ask, “Have you worked out yet?” Cue the sheepish face, rolling eyes, and “no…..” Then comes the “Ok.” And they walk away. The deed is done, the guilt trip is complete. Nothing more needs to be said, because you secretly know you should have busted your butt on the elliptical hours ago. You see, my family is incredibly supportive. They have two teenage daughters with POTS and honestly know more about it than we do. Everything is pretty easy to do (albeit annoying). I mean, medicine, is something you automatically do at some point. I finally finagled and only have to take it twice a day, morning and night. It’s a regimen, and quite an easy one to follow. And thus, almost impossible to forget. My morning protocol is the same way.
First I hear the alarm. Sigh accordingly. Reach over very ungracefully and text my family good morning (knocking over a water glass in the process). Then I get up, microwave a cup of bullion broth and drink that under my covers. I pop a pill, then get up and have breakfast (usually oatmeal with craisins, walnuts, and cinnamon). I go to get changed and remember I haven’t done my stretches/exercises/thingymajiggers. So I do the following:
1. 25 tip toes (there’s probably a real name for this somewhere). My doc at the Mayo clinic coached me into making it a stretch with four beats. You life your heels up, one two, back down, three four. This is probably the easiest stretch to do but it will make you wicked dizzy if you take is fast.
2. 25 (I usually cheat and do 20…) squats. Don’t look at me like that, you can start out in small increments. You just have to take them reeeally slowly and make sure you don’t hyperextend your knees. This means if you look down your knees should not go past your toes. They made me really dizzy when I started out, I could only manage five. I worked my way up, you can too. And I freaking love that picture. So appreciate it : )
look at that smexy broccoli lifting weights. Gosh, this is what happens when I’m allowed to choose my own pictures…
3. Lifting weights in increments of 25. I do 2-3 each morning mostly because I really hate how weak my arms are. Between roping, swim, and tennis I used to look like pop eye the sailor, now, not so much. Anyways, only one set is required (ask your dad or someone who works out, it’s pretty easy).
1. Know your schedule. Make a list of free hours you have during the day, what days have more homework, and take note what time of the day it is. For some reason, POTS kids have more energy in either the morning of afternoon. For me, its usually the morning. But that’s a bit unusual. Apparently everyone else feels less than stellar in the morning. So take that into consideration. There’s no point in scheduling a workout session that most days of the week you can’t complete because you feel terrible. Also, if you know you have class right before, wait half an hour. We’re not bunnies that can go jumping from one activity to the next. I usually need 30 min to an hour to relax before I can even think about working out.
Here’s the tough part. Working out. It’s a huge mental block, whether you want to count walking to class exercise, or even just putting on a clean shirt in the morning. No. This is an addition to normal daily activities to ensure you can do them in the future. My parents motivated me at first, but as I got better and able to self-function a little I made a chart. Mine had flowers and doodles on it, bribery for making it in the first place. Just say how many minutes a day you’re going to do, and then add about five each week. Keep adding until you get to 30-45 min. I’m at about 45 min of run/walking. I run for half and walk back. I generally walk up hills because I don’t want to look like this:
It also helps if you stretch and warm up your muscles for five minutes of working out. It’s less of a stress on your body. One thing Dr. Papa often tells me to do is to wear my anti-embolism stockings while run/walking. I wish I had in the beginning, my calf muscles had gone kaput. The stockings keep your calves taut and increase your blood flow to keep you from getting dizzy. And as awkward as it feels when you put them on, people generally are impressed (especially if they’re a cool bright color!). Oh, sock update, I got AMAZING anti-embolism stockings at Fleet Feet. They’re colorful, comfy, and they make sure they fit perfectly. No one questions them when I wear them to pick up Ultimate Frisbee games either, I suppose because they’re considered “Athletic” now. No one needs to know they’re also for old people. And POTS people. So be proud and wear your socks high!
When you’re done, drink a huge glass of water an pedialyte (maybe two!) and sit down. Don’t lie down or sleep. Wait a bit before you take a warm shower (not hot, hot water can cause your veins to dilate and you could faint). It’s also a good time to do facials because you will be in one place for a time and can then wash them off in the shower. I dunno, I like masks and stuff like that because my skin is a finicky creature. My favorite to use are from LUSH because I know all the ingredients (they use nothing synthetic) and they leave my face all glowy. Cosmetic Warrior (good for acne), and Mask of Magnaminty (it’s cool and makes your skin tingle. Plus I really like the smell!).
Working out is an every day struggle. But if you aim for every day you will probably end up with approximately 4-5. That’s the reality of our situation. This is the one way we can really see a tangible result besides just waiting out a bad day. You want to get better. You can get better and you WILL get better. But instead of feeling useless, put your mind to working at it. My parents used to say working out is a job, it truly is. It ranks above friends, homework, work, everything except sleep and medicine. This is well within your power. You are strong enough to improve your body. Pie and I both have. It gets better.
There’s this last thing. I was trying to encourage a friend recently and I told her to celebrate every accomplishment. I think that is the most important. Have your best friend or little brother buy you flowers when you work your way up to working out for fifteen minutes or a half hour. You aren’t working out to become normal again. You’re working out to become extraordinary. You are worthy of flowers. You are fearfully and wonderfully made, and completely adept at dealing with this. We have a saying as Christians that God never gives you more than you can handle. It’s true. You can handle what would break most, the loss of everything that formerly made them proud of themselves. But there’s something else inside you, something indomitable.
“Here and there does not matter
We must be still and still moving
Into another intensity
For a further union, a deeper communion
Through the dark cold and the empty desolation,
The wave cry, the wind cry, the vast waters
Of the petrel and the porpoise. In my end is my beginning.”
– T.S. Eliot
Good day my dear Readers. Cool picture eh? It’s called Dishonest Heart. It fits many of our plights all too well.
It’s Teddy again.
Right-oh, to start off the post I wanted to give a radio station recommendation. My favorite station of all time is called Zeilsteen Alternative Radio. It describes itself as playing the Killers, Muse, Coldplay, Radiohead and more. It streams from the Netherlands and you can find it on the iTunes list of stations. Listening to it right now, and it’s pretty splendid.
My topic for today is circulation and cold extremities. The summer I fell ill with POTS an odd phenomenon occurred. I was cold, at the most inappropriate times (reflexively, I was also hot whenever I was dizzy, but we mistook that for being feverish). The chill was odd in itself because it was a pleasant warm summer. My hands and feet were most affected and they soon because a nuisance. Flips flops were impossible, and hands soon made a burrow in my pockets. It wasn’t so much that they were cold, as what that caused. If they were chilled for say, half an hour, they began to itch, swell, and grow hard. My feet would become too swollen to walk upon and my hands would stiffen and become a hindrance in themselves.
My dad has Raynauds syndrome, so we assumed it was a precursor to it. This was well before we went to the Mayo clinic, so all we knew was that my body was going nuts. It hasn’t gone away over the years since, but it has lessened in severity. When I mentioned it to my doctor, he wasn’t surprised and mentioned it was probably due to bad circulation. It sucks, because POTS has so many seemingly random symptoms that it is nearly impossible to figure out what causes what. If you research cold hands and feet, you come up with hundreds of potential life threatening illnesses that serve only to alarm you. So don’t look them up. Ask your doctor in person and show them what you mean. It will save you a lot of anxiety.
Speaking of doctors, my father (who would like to be known as Dr. Papa) explained to me in depth what causes the swelling itself. He says that the autonomic nervous system is responsible for many things, one of which is the circulation lymph. Lymph is a clear to milky white fluid that is in your blood. Blood isn’t one liquid by itself, it’s made of many different proteins. Lymph carries the white blood cells throughout your body. It also tends to leak out of veins and tissues and needs to be pumped by peristalsis (the contraction of muscles). Peristalsis is controlled by the autonomic nervous system. So there you have it, it collects in feet and other places (hands). I may have butchered that, but he promised to write a paragraph in doctor jargon to follow up (which I am holding you to, dad!).
Anyways, if I have it and the wikipedia article mentions it as a symptom, I can’t be the only bloody one in the world with it. So I want this post to assist those of you have to deal with itchy feet. They’re just practical suggestians, but they are useful.
1. Stick your head out the window and see how cold it is. Anything under 70 degrees, wear closed toes shoes. I am not kidding. I could feasibly wear flip flops over 6 months of the year. But I don’t because swollen feet that hurt like heck simply are not worth it. I mean, you don’t even have a cool story to go along with why you’re limping in the first place. “What did you hurt yourself or something?” “Nah, my feet just swell up at odd moments” Great way to make people give you a weird look. So don’t be a soldier and take precautions.
2. Know your classrooms/workplace. Some rooms are downright colder than others. For some reason they roast the math students at my school and freeze the biology students. It’s just how it goes. So try and remember which classrooms are which temperature. It would be a disaster to wear a long sleeved shirt to calculus class. I tried that once. Nearly passed out. Learn from me.
3. Have an arsenol at your disposal. “But Teddy,” you whine, “aren’t sneakers enough?” Nope. No such luck. For example, my favorite sneakers (converse) have holes and little vent thingies in them. Which makes it really, really cold on an off day. I have warm closed toe shoes and colder close toed shoes. I wear them both equally, but the latter need a little bit of help. Lets start off on the easy shoes.
Uggs. You’ll only get weird looks if you wear shorts with them. They’re hard to see under jeans and cords. Plus, they have so many adorable types it can be downright fashionable to wear them in the first place. Also, my favorite invention that Uggs made are the Ugg sneaker. Oh yes, they look like a low top converse and are surrounded by fluff and warm things inside. SUCCESS! That way you won’t be so self conscious. I wear these puppies:
But there are a ton of different colors. These are just the originals (which I POUNCED on a few years ago). You can also buy fluffy inserts to put in your regular shoes.
Leather boots. Yeah, I’m the worst vegetarian ever. But I mean, leather retains heat quite well and boots are really, ridiculously fashionable right now. They help me when I go to the theater with my family and need to dress up. If you haven’t noticed, it’s quite difficult to find closed toed women’s shoes that are dressy. They generally have something peaking out. The ones above are just fun, I don’t actually own a pair. I’m not cool enough to wear them.
By the way, some things to avoid are stepping in puddles, wet grass, and humid days in general. They make everything worse and I don’t know why.
One way to protect your hands is when you go on a run to wear gloves. I generally get too warm half way through the run and take them off, but they help on cold afternoons.
But sometimes, no matter how hard you try, you still get cold feet. Whether you’ve been sitting in a position too long, or misread the weather, your feet and hands just hate you some days. One thing that doesn’t work are anti-inflammatories. Advil, any allergy medicine, etc. do squat for our extremities. What makes them hurt less is a warm bath!
It doesn’t make the swelling go down any faster, but it stops it from hurting. A cup of tea helps warm up your body too. For some reason whatevers in my belly makes the rest of me change temperature.
Exercise doesn’t help, and running on swollen feet is very painful. So don’t try it. Do you guys have any methods that help? If so, shoot us a comment. I hope your feet are nice and toasty tonight!
It’s the all new blogger excuse. My laptop ate it.
My dear POTS-ients,
How are you this fine fall day? I’ve just realized how awesome fall/winter truly is. The reason, my dear readers, is not just the crunchy leaves. Rather, it is the ability to deal with our temperature intolerance in a socially acceptable way. Plus, the cool temperature totally causes vasoconstriction, so there’s a chance we might actually have blood in our heads for once. Not only that, but we can bundle up our poor frozen extremities in fashionable accoutrements. I particularly like the wrist warmers and hats on etsy. Talk2thetrees is my favorite shop there : )
Seeing your breath, snuggling up under a quilt, are all wonderful things. My one sadness is that my tea intake has been slashed. I have completely given up caffeine. This is especially tragic in light of all the loose leaf chai I purchased right before school started *sigh* My cardiologist mentioned ages ago that I should limit my caffeine intake, “pshaw, THATS not going to happen” plus it doesn’t have much caffeine… or so I grumbled. But then I started to see a hideous pattern. A pattern of lousy afternoons after drinking my morning tea. And the lousier the afternoon, the stronger the tea I drank. It was an unfortunate cycle. Anyways, I would love to encourage you to try herbal teas instead, even for just a few weeks. Ginger tea is also super tasty, especially if you use local honey.
I also found some blueberry tea at a local farmers market, it’s filled with petals and bits of dried fruit. I think loose leaf tea is more of a pleasure to drink, even if it’s more troublesome to clean. Plus, when it’s chilly outside, nothing warms my heart like tea.
I’ve also began to wear my hideous anti-embolism socks again. During summer and early fall it’s really difficult to convince myself that thick, high socks are at all appealing. Now though, they fit nicely under jeans and cords. I think I could live my life with corduroy pants, honestly. They’re warm and so so soft. Oh, I’m also experimenting with leggings, boots, and dresses to hide the despised socks. I bought a pair of chocolate brown leggings and they are a master of disguise. I’m also using them for my halloween costume. What am I going as? As a teddy-bear. What did you expect?
How do you guys embrace the seasons? My last bit of fall is baking bread. It’s really easy and far, far tastier than store bought. Plus, it smells phenominal! And it kind of blows your friends minds when you say you made it yourself. It’s nice to make something tangible when you’re sick. Like Pie says, sick days are ” a day on repeat that gets lost in translation”. Days blend together, so for me baking bread gives meaning to a day. My favorite part is when your hands smell sticky and sweet from kneading dough. I use wholewheat flour and fresh honey (I love honey, far too much in fact). Bread makes for awesome breakfasts, I love melting brie on it and then eating blueberries by the handfull. I messed about with recipes this summer, and this is my favorite:
Whole Grain Cockaigne Bread (From The Joy of Cooking with a few alterations by Teddy)
1 package active yeast & 1 tablespoon brown sugar in 1/4 cup of warm water (105-115 degrees)
Let that sit for about fifteen minutes while you make the wet mix below
1 to 3 tablespoons nonsalted butter (I melt it in the milk)
2 cups warm milk
1 tablespoon salt
4 to 6 tablespoons honey
After fifteen minutes, mix the yeast/water/sugar mix into the wet mix and slowly add six cups of whole wheat flout (I use whatever flour I have on hand (oat, graham, etc.) with decidedly mixed results. Wheat turns out best). Knead and let sit for 1 to 2 hours in its bowl. Then divide in two and knead again. Put the halves in their pans (Two 5 by 9 inch loaf pans) and let sit for another ten minutes while you preheat the oven for 350 degrees. Put those suckers in there for 45 minutes and two golden brown loafs should come out! Stick a knife in the middle and pull it out. If theres dough sticking to it, put it in for a few minutes longer. If it comes out clean, it’s done!
Okay, now that that little burst of domesticity is over, I have a funny video to show you.
So. That’s my funny for the day. I have been downright negligent, so I plan to post every day for the next week. You will be heartily sick of me by the end of it! They may not be as long as my usual (I wrote this in Theology class…. so I guess I have time :P) but I will definitely try to get you to smile every day this week! So, lots of love and have a nice Halloween weekend!
Hello dear Readers!
This is Teddy. I would like to show you where I am right now, but I haven’t a proper camera. So I perused the internet for you.
I’m in a field of wildflowers behind my school leaning up against the side of a windblown tree. Of course, my tree is a Eucalyptus and not a Wild Oak as in the picture. But we make do with what we have. Have you ever smelled a eucalyptus? It has a sweet, clean smell that permeates the air. That, combined with the perfume of a hundred wildflowers makes it a marvelous spot. The sun is shining and it’s quite warm as long as you stay out of the shadows. I particularly like the fact that it’s hidden and no one can see me. You see, my school is beautiful, but it’s kind of like a castle up on a hill.
So, occasionally, I like to escape from people for a while and rest outside. One thing I’ve noticed about we POTS patients is that we stay inside a great deal. There is nothing wrong with that, to go outside when you’re feeling ill seems like a great bother. Especially when you feel dizzy and the temperature isn’t comfortable. But, every time I do manage to rest outside, whether by doing homework or reading, it always makes my day. Plus, the doctors are always harping at Pie and I that our vitamin D count is low. So that is an added benefit. So, if you feel up to it, go outside a little while! It’s spring time, and beautiful. It renews your hope in life like nothing else does.
But that isn’t really my point of this post. You see, my family cares about me very much. So much so, that they subject themselves to boring medical journals to read about POTS so that Pie and I can get better faster. Well, several case studies have come up recently about how they’ve been using pressure stockings on their patients with some success.
See where this is going yet?
Heck, I didn’t even know what anti-embolism (thats their real name) stockings were until recently. I mean, I knew old people (my apologies to any ancients reading this) wear unfashionable high socks, but I didn’t know WHY. It’s to make sure the blood doesn’t pool, which is POTS jargon for blood not being able to fight gravity and go up from your feet to your head. If you don’t understand it’s just as well. Because it means you probably don’t have to deal with it on a regular basis. I’m very jealous.
Yup. Aren’t they gorgeous? It’s what every 18 year old girl dreams of. Pie doesn’t have to wear them either, which she has been gloating about…. She calls them my old man socks. Her circulation is better than mine so…. ugh. The worst part is that I can’t wear dresses much anymore. Which is a travesty. I love dresses. I would wear a sundress every day if I could. So, I have a master plan.
Rainbow socks! You see, white socks are kindof… unattractive. So, I’m going on a magical adventure to seek out colorful high socks. If I cover up the anti-embolism socks with these beauties and my converse, it will have some semblance of fashion (not that I care much, but I dislike truly ugly clothes)
So thats my plan. As of now I am just wearing jeans constantly. I don’t mind it, it’s just a bit of a hassle. Oh my gosh, the first time I tried to put on these stockings it took me a half an hour. I kid you not. They are that tight. Luckily, I have stretched them out enough so it only takes a few minutes of hopping and pulling. But I can’t wait until I get these knee high colorful socks so I can stop working out in pants. Some friends volunteered to take me thrifting with them today, I have great hope! I’m also considering tie-dying them, but Pie says I have too many tie-dyed things already : ) Pshhaw, you can never have too much tie-dye!
Sometimes integrating health routines into daily life can be troublesome, especially for teenagers. At some point, you realize that there is no need to be self-conscious. No one is watching, at least not much. Most people don’t realize that I have anything wrong with me until I do something odd, like go a quarter of a mile around something on campus just to avoid stairs. It’s an interesting part of college life to realize that everyone has problems. Living in such close contact with strangers is a rather unique experience. I’ve met so many people with worse health problems than my own, people that appear perfectly healthy! I know girls in my dorm with epilepsy, in remission from cancer, and friends with severe diabetes. I didn’t go out of my way to find kids with health problems, it was just a part of their lives that I didn’t know about until I got to know them better. Basically, it’s ok to stand out. Being normal isn’t all that great. I know we wish for it pretty often, because it seems so much easier. Easier than what we have to deal with now at any rate.
When I was younger, I used to wish that something would happen to me. I wanted to be like a heroine in a book, off traversing the world or be on a grand adventure. It happened, but not the way I thought it would. I never expected to become sick. It was a type of rude awakening that trials aren’t always romantic or poetic. The trials are specific to you, and your life. Everyone is dealing with something, even if they do not appear to be. My basic message is, don’t drown yourself in self pity. I won’t tell you the age old cliche that “you could have it so much worse” because you already know that. You know that there are people starving in Africa, and people in Japan with broken hearts. That doesn’t make it easier to deal with what you have to every day. You have to be stronger than you are, and kind enough to allow yourself to feel a little joy.
Speaking of joy, do you remember those Sim 3 legacy blogs I enjoy so much? I found a new one, a hilarious one. I physically crack up while reading it, Pie can attest. She thought I was going nuts over break “Oh, it’s Teddy. Laughing at her computer screen again.” Anyways, It’s called “The Southern Prettacy” by missmiserie. She is so funny, I never knew what a caricature of a red neck was like until I read her blog. It sounds terribly stereotypical, but it’s really making fun of the shenanigans people get up to in their own homes.
Also, something cute for you today: Marcel the Shell With Shoes On. It’s a youtube video that my brother hates and I love, it’s so quotable! Pie and I keep texting quotes back and forth.
“Want to know what I do for adventure? I hang glide on a dorito.”
It’s adorable. Watch it. It will make your day, guaranteed.