Dandelion Wishes

Text message of the day

Teddy: How am I? Tired. Jeez, maybe I have a chronic illness or something.

Pie: A chronic illness? Nah, only awesome people get those.

Teddy: Cheers guys!

Ok, so todays post I just wanted to write about things that make me smile no matter what, even if they’re a little foolish and childish.

First on the list is dandelion seeds. Every time I go on a run I find one of these suckers and make a wish. Yeah, usually I wish for the same thing, but it’s also really, really fun to do : ) It’s funny, because there’s this huge fine on our campus for picking flowers, I wonder if next year there will also be a fine for spreading weeds. My dad (who is an exceptionally nice guy) would beg and cajole Pie and I to not blow them all over his lawn. I now sympathize, weeds are a pain in the neck. Except for dandelions. They’re magic.  

There’s always that song that makes you think of happiness, well this is mine. It’s short, only 48 seconds long. But it’s perfect, and it makes me think of hopeful things. It’s not my favorite song, or even band. But it’s special, so I hope you’ll appreciate it. It’s like the modern day version of “Air on a G String”. Try listening to that on a beautifully starry night, you will never think of classical music the same way again.

http://www.youtube.com/watch?v=qbI-B-hffbM

“Post Cards from Far Away” by Coldplay

This one is a bit more odd. I’m not sure if you have figured this out about me yet, but I love plants. Like, more than is good for me. My friends constantly tease me as they drag me away from plant booths at the local farmers market. But some plants are just more darling than others, and the pea plant is the cutest of all. The elegant tendrils and inquisitive leaves just seem so charming! I’m growing some now in a teapot in my room. I’ll have to upload a picture at some point, these online photos do not do my peas justice.

Ok, this one is a bit more universal. But only marginally mind you. Trains. Not their mechanics, or destinations. Just the fact that to me they represent adventure and excitement. The first time I went on one was a night train to London, and I didn’t sleep all night because I kept waking up thinking “I’m on a train!” In stories, all the exciting things happen on trains. In Harry Potter, Platform 9 and 3/4 would be bustling with magic, owls, and scarcely concealed wizards. In Agatha Christie mysteries, someone is bound to get themself murdered, and it’s up to you to solve it. It’s also a terrible cd by my once favorite band Keane, but that memory rather sullies the magic of trains.

Moving right along to something really tasty, pomegranates! I bought a huge one at the market this weekend and it makes the most perfect snack. Plus, It’s given me something pretty to look at since I’ve been stuck in bed. I feel like pomegranate seeds are more beautiful than any ruby alive, don’t you agree?

I can totally see why Persephone ate a few when Hades offered her some. They might actually be worth a stint in the underworld for. But only maybe.

Kindof alongside the plant thing, new growth makes me smile. A new leaf, gently unfurling is just so delicate and already perfectly formed.

That being said, it was really difficult to find a proper picture of it, so I wonder if most people miss it. I find that hard to believe, because every time I see something as beautiful as this, it reaffirms the existence of God for me.

Buds do it too. They’re just so swollen with innocence and the promise of new life. They’re incredibly hopeful, especially when I’ve fertilized the heck out of my orchids to get to them to bloom 😛

Mushrooms are just adorable (contrary to what Pie believes). I mean honestly, who can look at this and not grin?

But everyone has to have something like this. Some little aspect of their life they love beyond all words. Or something that fills you with wonder, like when you are swimming and suddenly look up to the world above. Those sorts of things. C.S. Lewis describes it really really well in “Surprised by Joy” he describing the same emotion that I have here, “I call it Joy, which is here a technical term and must be sharply distinguished from happiness and pleasure. Joy (in my sense) has indeed one characteristic, and one only, in common with them, the fact that anyone who has experienced it will want it again… I doubt anyone who has tasted it would ever, if bother were in his power, exchange it for all the pleasures in the world. But then Joy is never in our power and pleasure often is.”

I cannot summarize it any better. So I hope you find Joy this week, even if it’s fraught with other, less lovely feelings. And please, share with me what makes you feel Joy! Ok? Even foolish things, like dresses and the smell of rain. So I would love to hear from you, because focusing on these things are just as important as our medical jargon.

Be Well!

Teddy

Happy Halloween

Pie: HAPPY HALLOWEEN to my goblins and ghosts out there. A shout out to all who are feeling particularly creepy today. I was thinking about halloween, and one major thing about halloween (besides getting dressed up) is getting scared. Right? Going to  haunted houses being scared by people jumping out of a bush and so on. I was thinking of things that scare me, one of which occurred last night actually. It was about  10 at night and I was home alone, I needed to go up to my barn and let one of my horses out of his stall and into the larger arena area. Every time I walked out of my house, I would freeze. I was TOO AFRAID to walk 50 yards in the dark…. PATHETIC RIGHT? Isn’t that kind of how POTs is though? You are too afraid to go out of your comfort zone because you may be punished with ill health in the near future.

I thought the boogie man would jump right out of the darkness and throw me in a canvas bag and I would cease to exist. Pleasant visual don’t you think? I think it took me three times to actually get up to my barn.Once I got there I had 3 groggy horses who were very excited to nuzzle me and rub their heads on my inviting back. But I was terrified to originally go up to my barn. This morning I was almost laughing at myself because it seemed so stupid. In the light my backyard looked inviting and beautiful. With the change of the clock I entered a dark scary arena where I was uncertain at every step.

I’m not normally scared of much though. I (for the most part) like insects except for spiders, scorpions and cockroaches. I’m not even really terrified of them its more of a mutual dislike. That’s kind of it…..like I said I’m not scared of much. I don’t like horror movies haha. But I was really scared when I thought I was dying in 5th grade. I was at the point where I was almost too sick to even notice though. I was normally not really frightened but every once in a while I would get a sinking feeling in the pit of my stomach and I would ask my Mom if I had cancer. She always said no, thankfully. But it’s a really eye opening experience. I pray for people who aren’t quite as lucky as I am. When they ask their Moms if they have cancer…their Mom will tell them yes. To all of you out there who have gone through that or are currently going through it right now I just want you to know I will be praying for you (it’s totally fine if you aren’t religious, it’s the thought that counts right?). But I feel like all illnesses are scary. Your body is doing things that you have no control over. Once I had a dream I was in a car (or plane????),

my car flew off a cliff and I was falling through the air. I knew I was going to die. It’s actually hard to explain because even though it was just a dream, it was so real and I knew I was going to die. There was nothing I could do to stop it from happening.  I had no power to save myself…nothing could save me. Then out of nowhere a big mat saved me….but that actually isn’t my point. When I think of illnesses I think of a plane (car whatever!) that isn’t working properly. When you feel well the plane flies through the sky without any trouble BUT when there is something wrong with the engine the whole plane is in chaos. That’s how I feel when my sickness takes over. I feel like a plane with a faulty engine. Yes, it is a strange way to tell you that I know how it feels. Everything that I am scared of seems pretty small and silly when next to my REAL health issues. I would much rather be in a blackhole of darkness covered in bugs than have POTS. That’s what makes you brave (not the blackhole stuff….). What makes us brave is the demons we have to face in our lives. They aren’t cute little kids with cotton devil horns. They are more terrifying and more worthy of your fears. I guess I am sort of trying to say don’t be afraid of things that don’t hold a candle to real troubles. Don’t be afraid to try to figure out any possible way to avoid your plane from crashing. Don’t be afraid of what you are, or what your body is capable of. Don’t be afraid. I’m sorry if this is kind of a strange post for halloween… it sort of just popped out. I just don’t want you to be afraid of your sickness. I don’t want it to own you. Don’t feel like it is a bad dream so you refuse to sleep. Don’t refuse to go down without a fight. Have a little fun in there too okay? Be strong, brave, mighty, and be what your sickness have never allowed you to be. You are a free person, whose limitations are a bit different then the average person, but that’s okay! That’s exactly what makes you brave enough to face your fears. I hope you have a wonderful HALLOWEEN!!!! Be safe, eat candy, be bold, be BRAVE!!!!!!!!

❤ Pie

 

P.S. Here is a really funny video that will make you laugh ❤ Enjoy (Please excuse her need to curse)

Inspiration

Day four of the Teddy times

How nice of Pie was is to take my third day? I was already tired of hearing myself write. I wanted to start off by saying how much I miss and love her, she makes me a far, far better person than I am on my own. If you haven’t noticed by now, she’s genuinely kind and her humor is off the charts. So you are all pretty blessed to get to read posts by her : )

I wanted to talk to you about something important. World changing important. The POTS online community and what POTS people are doing to expand awareness. I stumbled across an article a while ago that made me smile, how a horse helped a POTS girl be able to start on her road to recovery.

http://www.uticaod.com/topstories/x386662107/-Miracle-horse-allows-woman-to-give-back

This story made me happy because I love my horse so much, and he has definitely brightened my life considerable. I wouldn’t attribute my recovery to him, just because I tend to become overly athletic when we ride and exert myself. Roping does that, it makes me way too competitive.

This is Raider, I have better pictures but this is the best I could scrounge up on my latop. Isn’t he a handsome brute? He knows it too, so I make sure to braid his forelock in retaliation. He’s incredibly intelligent and likes to smash me into trees and the like whenever he gets the chance. Just wanted to show you a person (he totally is) that is responsible for another piece of my heart.

But back to business. Inspiration

Everyone has something that makes them feel like they have a purpose. Mine is writing and thinking, but each person’s is different. I wanted to show you how people are using their gifts and passions to bring awareness to our syndrome. People need to know about POTS. They need to know how to feel for people that are going through it, and how to help. Ignorance is not their fault, it’s ours. We have a responsibility to be more compassionate people after going through what we have and helping those that are going where we have already gone.

One thing that is really easy to do is become a member of the POTS community on the web. Most people have Facebook profiles, and liking POTS pages are a good way to connect with other people. Don’t worry, people aren’t going to think that you’re a pothead. They might even click on the page itself. Some good ones that I’m a part of are:

SuckItPots

Dysautonomia: Postural Orthostatic Tachycardia Syndrome (POTS)

Change In Life With Postural Orthostatic Tachycardia Syndrome

There’s also a kids one. They’re a great place to share how you are working to get better, and how to help other people. People often ask questions because they want to understand their diagnosis (or that of their child’s) better. This is a tangible way to help people.

I thought about being a research doctor at the Mayo clinic for awhile, but realized that my talents lay elsewhere. I still think that it’s an awesome way to participate in finding cures and diagnosing people (the first step to healing). So if any of you are thinking about becoming doctors when you’re older, you should think about it!

Oh, if anyone ever asks you what’s wrong with you, I wanted to give you some resources to direct them to.

http://www.huffingtonpost.com/barbara-hannah-grufferman/postural-orthostatic-tachycardia-syndrome_b_1019879.html?ref=fb&src=sp&comm_ref=false#sb=2094337,b=facebook POTS was in the Huffington Post, how cool is that???

http://www.nytimes.com/2011/10/18/health/18brody.html?_r=1&emc=eta1 And the New York Times

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf This is an awesome response to explain why you can’t always hang out with people even though you look “fine”. Plus, it’s sort of an intimate and tender piece. It makes you step outside of yourself and feel as someone who is ill does.

This is kind of embarrassing, but I actually wrote an essay about The Misses Pots, and what we’re trying to accomplish. There’s a contest for “Social Innovators” that Forbes and Harvard started. Gah I feel pretentious…. but I thought any opportunity to spread awareness is a good thing. If you would like to read it, I enclosed it below. I don’t expect to win, or even place. But maybe someone will read it and be touched by it. That’s what I hope for at any rate.

Social change begins when the ache of injustice is finally realized. My change is small and ignoble, but important nonetheless. It is ignoble because I have felt the need for it myself; it is not done for a friend or companion. I now work for those others because I understand what emptiness they dwell in. I was diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) when I was 17. It is a serious illness that wrecks havoc upon your autonomic nervous system (which controls your heart, blood vessels, everything that you consciously do not). My diagnosis led to the diagnosis of my little sister who had been seriously ill and undiagnosed for five years. Nobody talks about this syndrome because it was unknown until about ten years ago. This makes little sense because it affects up to one out of ever hundred teenagers. How can it affect so many and simultaneously so few? The symptoms are misleading because it appears to impact a number of seemingly irrelevant body parts. To be dizzy, have a racing heart, and numb extremities, is completely mind boggling to the average teenager. But when this happens to you every day, combing with crippling fatigue, you begin to wonder if it is all in your head. This is an invisible disease because no one can see your heart or how your hands tremble. You are told that all teenagers are tired. On paper you are healthy because no blood test can properly show what your nervous system is trying to tell you. This syndrome affects mostly high achieving females. I was very fortunate because I had a supportive family that believed me when I told them something was wrong.

Not only did they believe me, I also had a little sister that was going through the same thing. We supported each other in our unconventional medicine and workout regimes. We teased each other when we had to drink noxious liquids to increase our sodium intake. Together, we made the best of it. As we began to recover last year (a 2-5 year process, sometime much longer), we started a blog. There are very few bloggers out there that talk about POTS. And when they do address the issue, they can only convey the crippling depression that the syndrome has reduced them to under an onslaught of symptoms. We decided to do something different. We write about the happiness we find in every day life. We blog about the popsicles we make out of pickle juice for the salt, and the rainbow socks we wear to cover our ugly anti-embolism stockings. Our name is The Misses POTS, whimsically named after the Disney character in Beauty and the Beast. Our goal is to bring awareness and foster a sense of community on the internet with others that are struggling through this. We know we are not the only teenage girls dealing with this problem. There are others searching for a sense that someone is going through the same thing. Our hope is that this will grow into a movement (not just our blog, but together with every other writer who discusses invisible illnesses), that together we can educate the public and support those going through this alone. This does not affect just us. It affects families. It affected my mother as she watched both her daughters wither away for no reason. It affects the siblings that are suddenly neglected because their parents are frantic with worry for their sister or brother. It affects all of those cursed with compassion because they know that chance alone separates the healthy from the sick. Change will not occur unless we support one another. My sister and I are going to be success stories. We are not our syndromes and neither is any other POTS kid. Maybe we are a little too tired to start a marathon for Postural Orthostatic Tachycardia like the Susan G. Komen movement. But with our laptops, we can change the world sitting down.

If you find a typo, don’t tell me. I don’t want to know! And the picture above is the gelaskin I use for my ipod, kinda sorta love it. I was inspired to do something about this because the creator of “To Write Love On Her Arms” came to my university and gave a talk. I just suddenly realized that I could do something. That it wasn’t impossible, and that The Misses Pots was trying to accomplish something. Why do we hide our illness? Why do we lie and say it’s not that big of a deal? Why can people run marathons for cancer (which is awesome, don’t get me wrong), but we can’t be bothered to support ourselves? If you’re interested in the speech I heard, it was a lot like their Vision page on their website, except way more inspiring and charismatic

http://www.twloha.com/vision/

So today was kind of packed with information. But I think that’s ok once in awhile. I think it’s ok to think that we’re worthy of accomplishing something, and having dreams and ambitions. That we could help someone, even if it seems simple. How do you guys think we should help? I personally think we should band together and support all invisible illnesses, mental or physical. Because it’s important. Because you’re important. So that’s all I have to say. Thanks for reading! Tomorrow won’t be as heavy, I promise.

Be Well,

Teddy

Giles ate my blog post

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.

Yes that’s me. Totally worth it.

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)

Ingrediants

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!

Be Well,

Teddy

A Potful of College tools

Hey! It’s college season and some of you are headed off. So bully for you! (Erm, this is Teddy by the way…again)

Last year I headed off to school terrified out of my orthostatic wits. It wasn’t for lack of resources or family support, but it was tough. Before I became ill I had high hopes for college. I wanted to go on the East Coast and attend a top tier school. Didn’t happen. I got in, but I ended up being too sick to fly cross country constantly, plus having POTS in an extreme climate is bad news bears. So I went to a place that is pretty consistent weather-wise and we hoped for the best. Something must have worked because I’m going back for my 2nd year.

A few things to keep in mind in mind before you go:

-College is the best thing for your mental health (fun and intellectual stimulation)

-It’s a jet start for your social life

-Don’t Panic (Anyone notice the Hitchhiker’s Guide to the Galaxy reference?)

1. You don’t have to graduate in 4 years. Health stuff can screw it up, no matter how hardworking you are. So don’t sweat it.

2. People will be willing to help you. Believe me. You will be ok.

So before you head off to Hogwarts, there are a few things you should arrange first.

1. Contact the Disability service. POTS is a legitimate physical disability (despite how hard we fight against it) and they’re a great resource. A word of caution, give them unquestionable proof from your doctor, and a list of accomodations that you need. Some good ones are making sure the teachers know about what you have (they have to keep it a secret, and treat you just the same) so if you get sick that they can cut you some slack. The Disabilities service can also get you a room on the first floor near the main campus. It will be a lifesend on sick days and when you can’t deal with stairs.

2. Get a single room. NO this won’t inhibit your social life. NO it isn’t isolating you from others. It is NECESSARY. I fought against mine for all it was worth, but it was the main reason I could finish the year. Plus, a month in (when everyone else is sick of their rommates) they’ll flock to your room. My room didn’t have any floor space during exams because my friends would take it over to study.

Ok, now I know you are furtively looking through Target and websites trying to find sheets for an “extra long” bed. Secret? It’s not any longer. Honest. At least at my school. Get the sheets you want, and not the boring cotton ones you find when you’re at your wits end.

I realized there were a bunch of things like that. Things that you don’t know until you have already made the mistakes. So when a dear friend of mine was going off to college this fall, I compiled a list for her. I’ve expanded it for those of us with POTS, so here it is!  I tried to avoid the obvious things. Something tells me you won’t leave home without a toothbrush. So I know I’m giving you a lot of credit here, but I suspect you can live up to it : )

1. Minimum of 5 posters (nothings is sadder than a white wall)
2. Two microwave safe thermoses.
3. Triscuits/Wheat thins (salty snacks galore!)
4. Two sets of headphones (one always breaks a month in)
5. Ear Plugs (or there will be no sleeping until 2 in the morning in the dorms)
6. Puffs Kleenex with Lotion (colds run rampant)
7. a throw blanket (I got mine at pottery barn and I live in it. This is especially important on sick days where your body is cold intolerant)

8. Extra printers ink
9. Blank CDs (the new college currency)
10. Popcorn
11. Ramen (for those days you can’t make it to the cafeteria)
12. Tacky (for hanging up posters, pictures, syllabuses, etc.)
13. Extra body lotion/make up (it gets used up freakishly fast)
14. Dish soap
15. Utensils and a bowl or two

16. Sponges
17. Laundry bag, detergent, dryer sheets
18. A little black dress (something will always come up and you will need it)
19. Nail polish and nail polish remover
20. Granola bars (you will live off these on mornings with early classes)
21. Peanut butter and/or Nutella
22. A Brita or other water filtration device (the sink water usually tastes terrible)
23. Gatorade powder packets/pedialyte powder packets

24. Medical records for the disability office/university infirmary

 25. A couple novels/Sims 3/gameboy games for your bad days

Well, that is my current list. The rest is really up to your current taste. For example, I keep lots of tea, all my Harry Potter books, and plants in my room. Some people do not feel complete without a closet worth of shoes and a wall of pictures. Just bring what you need (and whatever I tell you to 😛 Have faith in master Teddy, I will not lead you astray!)

Most of all, I wish you luck. Going away is especially difficult for us because of all the care we need. You will be faced with tough problems, like how to tell someone you’re sick and if anyone needs to know. I decided to be very open about it, because then people would stop asking me why I avoided stairs, went to bed early, etc. You have a heart problem, end of story. It’s not a big deal. What IS a big deal is that you’re about to go off on an enormous adventure!

But a post would not be complete without something fun. I can think of nothing more so than decorating a dorm room : ) Pie and I spent the summer going to antique stores and craft stores. We cut up a book of new age-y pictures and made a collage. My dear friend at school and I are having a modge podge day soon to decorate our notebooks. (If you don’t know about modge podge, go get some! It flattens paper into collages and makes them stick together with a shiny glow) I brought some glass jars to put loose leaf tea in and lanterns for night lights. It gives my room a really outdoorsy feel. I found a really cool blog about a stay at home mom that makes nature-y crafts that would look AWESOME in a dorm room. I think I’ll try to wax some maple leaves and hang them up.http://www.5orangepotatoes.com/blog/nature-activities/

A dorm room project I just did was to take a bunch of clothespins and hang up pictures of my friends and family. It always gives me a glad feeling to see my favorite people smiling at me. Plus it makes me look like I’m artistic, which I assure you is not the case!

Be well,

Teddy

Cheer and Cherries

Hello dear Readers!

It’s summer, and with it comes a most delectable treat. CHERRIES! They are scrumptious and make me very happy : ) Just picture them, that charming scarlet berry with flesh sweeter than candy and shiny to boot.

I could probably eat an entire bowl of them. They are the perfect sweet thing for a hot afternoon. Well, for anytime really. Plus they come with several diverting activities such as pit spitting and stem knotting! Take a friend and have a pit spitting contest, it’s fun and harmless. Unless you’re wearing a white shirt, or if you’re REALLY good at it and hit the old man next door. Then it’s not so harmless.

Since they are so exquisite I look forward to them all year long. Cherries make summers that much more craved and desired. Of course, summer really is a fantastic season on all accounts. But this is what I wanted to get at, looking forward to things. At the risk of sounding trite, cheesy, and banal I wanted to bring it up.  You see, it is important. We spend so much of our time looking after our physical health that we sometimes overlook our mental wellbeing. I’m not recommending pills or a therapist. I’m suggesting we add a little more joy into our lives.

Being excited for things, smiling unexpectedly, feeling a rush of adrenaline, or the quiet warm feeling you get when you succeed at some small task are all things most people take for granted. My first year of being sick was mentally torturous. There were days I would wake up, and the only thing I would look forward to was returning to my bed. I am not depressed. I wasn’t then. Depression is a chemical imbalance in the brain and a sickness all its own. But circumstances can suck sometimes. It is especially thus when you feel so terribly out of control.

So lets take some control back! I know, there are no guarantees that you have enough energy to go to school. I can’t promise that you got enough sleep the night before, or that you can read a book. But there are still things to do to make yourself feel good about yourself.

The first one is easy and slightly obvious: appearance. Pie and I both gained weight when we first got sick. It seemed a dreadful injustice to feel so ill and also not like the way you look. My acne also came back, so I looked a hot mess. At the time I was constantly feverish and hot. I have mass amounts of thick, wavy hair and this put me at a bit of a disadvantage. The back of my neck would become sweaty and uncomfortable and over time I began to detest my hair. So I decided what every girl threatens to do at one time or another, to cut it off. I went to our dear hairdresser and got a boys cut (I donated the rest to Locks of Love).

To my eternal shock, I loved the way I looked. It gave me this little glow inside that I felt different in a good way, in a pretty way. As tame as that was, it was a bit of an adventure. So, I’m encouraging you to try something new. You’re young, and it’s just hair. So get that hair cut that has a bit of a risk to it, or if you want to dye your hair blue, go for it! There’s a good chance that if you’ve wanted it long enough it will turn out grand. Of course, if your hair is your favorite part about yourself, leave well enough alone. You can be adventurous in other ways.

I confess, I got this next idea from Pie. Nail Polish. She paints each fingernail a different color and it looks brilliant. I don’t paint my nails, I’m clumsy and generally make the polish look like it’s been through a blender. But Pie makes it look cool. The different colors match everything and give a little edge to an otherwise conservative look. Just make sure you don’t use the no chip nail polish (Pie used it for prom and it took MONTHS to come off, she was quite put out).

Both of those ideas are just ways to stand out a bit. One of my dear friends puts a single safety pin on the pocket of her jeans. When asked why, she gives a sly grin and shrugs. “Just to see who notices. It’s amazing how many people freak out over something that’s not quite normal.” At first I didn’t get it, but it’s true. Little stuff like that is empowering. You suddenly don’t fit into the sea of people around you. In a good way, a way you chose to stand out instead of POTS choosing it for you.

In regards to clothing, I’m not going to presume to tell you how to dress. I don’t fancy myself a fashionista, nor do I have any aspiration to be so. But I do like the way I look. My junior year in high school I was constantly playing sports so I stopped wearing pretty things. Then, senior year when I got sick, I stopped caring about my appearance altogether. Don’t get me wrong, sweat pants and sporty cotton t-shirts ROCK. But, you don’t exactly feel attractive in them. This year I discovered something fantastic, dresses. If you wear a dress, people suddenly assume you put effort into your outfit. Plus, putting on a dress requires NO mental concentration whatsoever. You don’t have to think about if the shorts match the shirt, or anything else besides. You just slip a dress over your head. And, suddenly, you feel like a girl again. Plus, they’re super comfy (at least the ones I buy). So get a comfy dress and throw on a pair of converse or flip flops with them. Or if you are way gutsier than I am, combat boots. Just an idea : )

Accessories. Ok, I’m definitely aiming this post to mostly girls which is horribly unfair. But the percentage is three to one, and I’m a girl. I don’t know how to be a boy. I don’t know what makes you guys empowered or handsome. But I’d love to know. So, if there’s something that makes you feel supermegafoxyawesomehot, tell us in the comments. Help someone else to feel that way once in awhile : )

Back to accessories. Such a broad topic, and my matching abilities are sub-par to say the least. But they’re hilarious and fun. One of my favorite things in this world are my red converse. They’re high tops and make me terribly happy. I think everyone should have something like that, something silly but fun. I also have these crazy large headphones. They’re red and match the converse. These sort of things kind of spice up a normal routine. I know people who do the same things with earrings, necklaces, and gloves. Also hats. I love hats, especially cloches, but am quite frankly too lazy and too clumsy to keep them on my head. So I wear headbands. Because even though I have short hair I don’t want to be thought of as a boy. (Speaking of which, boy hair cuts look really cool with dresses) Headbands are fantastic because you jam one on your head and it looks like you did something super elaborate to your hair. A guy friend one time said how much he liked what I did to my hair, even though it was the same hairstyle I had worn all year. Just with a headband.  So, if you want a simple fix, wear a headband. They have a ton on Etsy which are gorgeous. The one below is one I wear a lot.

If you’re wondering where to get fun things, online is the place to go. At least for POTS kids. Takes no energy whatsoever. But, if it’s a weekend morning and you’re going stir crazy/have a modicum of energy, go to your local Farmers Market. They have cool craft-sy stuff that no one else will have. I got an adorable fox hat (not real fox, knitted. I’m a vegetarian remember) there and it’s pretty stinking adorable.

By the way, I’m not recommending you do anything permanent to your appearance. So, don’t rush out and get a tattoo or crazy piercing (besides the health hazards, they last a lot longer than you intend). I mean, do as you like, but start small. Do something to get your confidence back. To remind yourself that you’re an attractive human being. You aren’t POTS. You are a person that’s going to kick POTS butt. The person you are now isn’t you. The anxiety about work, the nausea, dizziness, the endless fatigue and brain fog, not you. That’s POTS. So don’t let yourself think you’re lazy, ugly, or anything else demeaning. You are brave. Brave enough to deal with a debilitating illness and still remember how to crack a joke every once in awhile. So remember yourself as that person, not the one POTS makes you be all too often.

So, this post was about looking forward to things. But I think the thing we need to look forward to most is just being ourselves. Sure, it helps to plan for the future person we’ll be someday when we’re well, but its nice to enjoy the present once in awhile too. It’s nice to feel like we look good, even if we don’t feel great. But, in the end, I’ve learned there’s not that much we can control. And that’s ok. The only thing we really can control is how we treat others and how we treat ourselves. We can’t choose how we feel, or what our physical and mental limitations are. So make someone’s day by smiling instead of growling at them. Or better yet, make your own day by making yourself feel human (even if it’s only for a little while). Because you should feel beautiful. Or handsome. And successful. Even though our version of success isn’t what most people define it as. I hope you feel special today, and I hope you love yourself a little more.

Be well!

Teddy

Free-writes and Caffeinated Owls

 

Pie: Hello again 😀 It’s been a while! Thank-you saintly person for reading our blog. It’s really great to know we have people reading this (and hopefully getting some enjoyment out of it too!) The idea for this particular post came out of the blue, in my english class we have 5 minute freewrites (when you write about something for 5 minutes). Now normally I find these so called “freewrites” quite boring they make me yawn and my mind wander back to my warm bed. This freewrite was different. I started pouring out phrases that really made no sense while I was writing them. Like the  Beatles said,

“Words are flowing out like endless rain into a paper cup,
They slither while they pass they slip away across the universe
Pools of sorrow, waves of joy are drifting through my open mind,
Possessing and caressing me.”

I’m not trying to say my words hold a candle to theirs, but my words came out freely. When I wrote my freewrite I realized that the experiences that I was making up were actually my experiences in dealing with Postural Orthostatic Tachycardia Syndrome. It was a bit odd to unknowingly write something meaningful without realizing it. This freewrite explains how my life has changed through being sick better than I think I could have attempted to explain through a different approach. Like Teddy explained in her last post about how great writing in a journal can be. Writing can help get bottled up feelings released. Same as reading can, or singing or dancing. Anything that you enjoy to help you not  concentrate on the hard days. The good days are what matters, whether they are often or far between. This freewrite means a lot to me…..It’s hard to post this actually, because it’s really personal. But that’s what this post is about! Being able to relate to one another through realistic experiences. So please enjoy!

I fell into a liquid vacuum. It sucked me up and rearranged my way of thinking. I forgot how to remember, I lost my way, I fell into the nothingness, I sunk into the sky, I dropped my heart and I ran forwards and was pushed back. Sinking into the cold eerie light underneath my leather footwear. No explanations, no destination. The only options, to keep moving, keep pushing, and to keep trusting in the nothing of the everything. I was left to exist, but I chose to defeat. Defeat the choices I was forced to make. Choices that are made for you are lies in disguise. Reasons masked up to look correct and right. Lies were fed to me by the hands of an imposter I call sickness. I’ve forgiven but I have yet to forget. It’s unlikely they did the same. In my heated anger I became unfamiliar to my own recognition. I lost what I knew and forgot what I wasn’t. Sickness views and watches what I have become. A child left to fight off an invisible force. Mechanical and robotic they attempt to destroy, while I fight to live. I beg you to do the same. Their masks will dissolve and reveal their vulnerability. No mask will be found upon my soul. They have ripped mine off to leave me raw and unprotected. I have a world to gain and nothing left to lose. What if I refuse, refuse to be their ideal victim? Will their galaxies fade and their motivation turn to dust like mine did? A ticking clock will be my answer. I am more powerful than these masked terrors. I will leave them like dust in a bloodthirsty desert. I will say to them, ‘How does it feel to be defeated by your prey? No longer will you control me! I have fought and I will win. Postural Orthostatic Tachycardia Syndrome I will defeat you. I will reclaim my wishing stars, dreams, loves, aspirations, hopes, beliefs, values, heart, mind, soul, body, independence, strength, being and life. I will never be fooled by your cruel ways again.’

So, thats what a freewrite is! Now if someone says do you know what a freewrite is? You can say PSH YES! This post is a tad too depressing for me. I am sorry if you were wanting to read something more entertaining. My point in this post is for you to keep the bigger picture in mind. Even though I am still struggling with this sickness I am not letting it take over. POTS will not win because I won’t let it. This is the same thing for anyone fighting a disease or sickness. Keep an open mind, and enjoy the life you are given. For better for or worse we are all unique. This is something that has changed me and helped sculpt me to the person that I am and will become.

I am going to totally copy Teddy and put in a funny video at the end of this (serious) post. Because our blog is about making the best of a hard situation! As you know, Teddy and I are HUGE animal lovers so when we came across this video it was an instant hit. Teddy and I quote movies, videos, books, and t.v. shows like it’s going out of style. This video holds some of our favorite lines to quote. My Mommy (yes I said Mommy ❤ ) even quotes it. She will say ALLAN ALLAN ALLAN around the house if she wants to get a laugh out of me 😀

Honestly who doesn’t love dentist monkeys, Michael Jackson birds, a good game of nighttime daytime, beat-boxing chipmunks, consciences, and caffeinated owls? They are a must in my household! Thank-you once again for reading my fellow blogger! Have a splendiferous day!!

Love,

Pie