Dancing in the Kitchen

Hey guys and gals!

Pie here. Last semester I wrote a paper about the “storm in my life” for my theology course. I bet you can imagine what I wrote about! But if you are new here, or do not know, I talk about my battle with Postural Orthostatic Tachycardia Syndrome. I have grown up in a family that is religious. But please know that I am not trying to shove religion down anyones throats. This is just my own story and I wanted to share it with you. I wrote it for my theology class, that’s the reason for all of random quotes XD they were a part of our assignment. Hope you enjoy it, I really liked this assignment ❤

Dancing in the Kitchen

Robert Ellsberg once wrote, “A peacemaker prays. Prayer is the beginning and the end, the source and the fruit, the core and the content, the basis and the goal of all peacemaking (Ellsberg, 153).” I believe that we need to have blind faith through prayer. The problem is that we live in a day in age that people rely so heavily upon themselves, while forgetting to look towards God. We focus on what we believe measures our self worth such as, the worldly possessions that we value, but those will not last. Things such as money, status, and health are temporary and can be easily lost. We need to let God work though us, and help us to let go of our desperate need to control our lives. It amazes me how little control we actually have in this world. When I lost my control I was led to God. My spirituality and prayers were the core and foundation that protected me from the tribulations in my life. They were there for me in the beginning and I can be sure they will be there until the end. In the darkest time in my life I was immersed in a sea of prayers, those of my own, my family, friends, and strangers as well. One always knows they are lost in a storm when strangers are praying for their safety back to shore. I am desperately thankful that the strangers, friends, and family in my life that never gave up on me because, without knowing it, I needed them.

In the fall of 2004 I was a vivacious ten-year old with a big personality and bleached blonde hair. I had just transferred to a Christian elementary school, which scared me at first, but soon I came to realize how happy the school made me. This school taught me how to actively live through my Christian faith on a day-to-day basis. Which is a lesson I have carried with me for my entire life. Dauntingly, I had no way of knowing that I was a few months away from the storm of my life. My storm started, as many do, with a few raindrops. My body’s immune system was struggling to fight off viruses and I found myself sick every couple of weeks. With every stomach bug, flu, or cold, my body would not fully heal and soon I felt as though I was sick every day. My once blonde hair changed to brown and I felt like I was slowly losing my identity. I did not know who I was after everything I had know was stripped from my life. I was not sick everyday with a cold per se, but suddenly my well of energy had run dry. I spent the majority of my days lying on the couch, watching television. By the time I started fifth grade the energetic ten year old I had once been, had deserted me, and I was left with a new person who I did not recognize, but at the same time, was all I had left.

My memories from my eleventh year are blurred. I remember taking a nap every day, going to school three times a week (if it were a good week), listening to books on tape, and last but not least, going to doctor’s offices. In the past ten years my veins have run dry from every vile taken and my throat closed to every pill swallowed. The blood results were without fail perfect, and on paper I was a healthy little girl. I was so desperate for a diagnosis that I would pray for the test results to come back positive. My sickness was grueling for me, but much harder on my family. My parents worked tirelessly to discover a cure. I went to the finest hospitals and spoke with the greatest doctors in the country and finally, I was diagnosed with chronic fatigue. Fatigue means tired and chronic translates to all of the time. It was not a true diagnosis, just a title for the unknown. Soon doctors would turn me away because they too, could not see the cause of my storm. I was not diagnosed with Postural Orthostatic Tachycardia Syndrome until I was a freshman in highschool.

Looking back, my Mom ensured I never fell into depression. She made sure every week I would have something small to look forward to. We watched comedies, made delicious food, did science experiments with my neighbors, read funny books, and most importantly we laughed. My childhood was never deprived of laughter and that was the best medicine. I think that is what God wants for me, a life of laughter and letting go of control. On my hardest days my Mom would be in the kitchen and she would pull me in and dance with me. I would rest my weary body against hers and she would sing to me and spin me around. She taught me to see happiness in my suffering and hope in my recovery. My life storm relates back to my theology class because they both have taught me how to live life to the fullest and how to remain thankful. My mom gave me peace just like when Jesus bid farewell to his beloved apostles he said, “Peace I leave to you, my own peace I give to you; a peace the world cannot give, this is my gift to you (Ellsberg).” It is challenging to find peace within a storm but I have found, if one looks long enough, it is possible.

Dancing with my Mom in the kitchen was more powerful than any diagnosis. Laughter brought me peace and simultaneously destroyed my self-pity. I wanted to choose a path that did not lead to a loss of hope. My life’s peace remained fairly strong throughout the lifespan of my storm but I vividly recall three moments where my hope was shaken. Each time was almost identical to the other where I stood in my sister and my bedroom, sobbing and begging God to heal me. I asked him why this was happening to my family and why I had to watch their hearts be broken. I felt guilty that my pain had become their pain, and my burden was theirs to carry. It is much easier to feel pain inflicted upon yourself, than to see your own pain reflected through the eyes of the people you love. Despite my frustration, I always felt God’s innate calming presence in our conversations, which is something Teasedale would describe as the “quieting of emotions”(Teasdale, 24). My struggle left me with two choices, to either turn my back on God, or to walk with him.

My illness instilled a blind faith in my heart. I truly believe that suffering is one of life’s greatest teachers. My path relates to those in Modern Spiritual Masters, because my storm led me to God just like, Mother Teresa, Thomas Merton, and Henri Nouwen. Mother Teresa found her blind faith through prayer and she said that, “Work cannot substitute prayer. Nevertheless, we can learn to make work a prayer…by doing our work with Jesus and for Jesus. (Ellsberg, 27).” Mother Teresa has taught me that I feel closest to God, not when I am helping myself, but when I am focusing on others. For the duration of my illness my family kept me strong and humble and I was reminded that many children were suffering more greatly that I could imagine.

I lived with this severe illness well into my high school years and looking back I cannot imagine the person I would be without the conflicts I have faced. I can now be a support system to the people around me and finally start thanking God for all of the angels he has sprinkled throughout my life. A wise woman named Wangari Maathai once described, a hummingbird putting out a fire with one drop of water at a time, she explained that one drop may seem insignificant, but the small bird is just doing the best it can. When we are put up against trials such as these, it is our duty to try and put out the fire whether it is our friend’s demon or our own. We can alleviate their pain by just being there to comfort them in their time of need. I cannot express in full the importance our actions have on people. Without my Mother, Father, family, friends, and even, strangers I would never be where I am today. (Maatihai)

The best words I can use to describe what my storm has taught me are not my own, they come from Robert Ellsberg, and through my class readings his words ring in my ears and overpower all of the other voices. I want to live life through this phrase, “Make sure that you let God’s grace work in your souls by accepting whatever he gives you, and giving him whatever he takes from you. True holiness consists in doing God’s will with a smile (Ellsberg, 33)”. Life may have given me an illness that seemed unbearable at times but I am proud of how I handled it. If I have learned anything from my life, it is to not take things for granted like I once, did in years past. The teachings of this class have shown me that kindness of a neighbor can go much further than self pity, and we become who we are meant to be by building each other up. Gandhi told us that our values become our destiny; therefore, we can never be who we are meant to be, without helping our neighbors become who they are destined to be.

Thanks for reading! Have a wonderful rest of your day ❤

Pie

What Am I Going To Do?

Hi guys, it is Pie! I wrote this post a couple years ago back when I was in high school. I stumbled across this little gem while I was looking through some blog posts that I never finished. Hope you enjoy it ❤

 

You know that feeling? That sick indescribable feeling when your heart sinks into your stomach and a thought flashes through your mind, “What am I going to do?” It happens a lot doesn’t it, especially on a truly awful day. It normally happens when we are at a very low point in our life, year, week, or even hour. It happens to me when I am fighting off a virus or a virus has completely taken over me. I’ve been sick twice in the past week and a half. I was really stressed about this school year because I had five classes that were extremely difficult. I missed the first three days of school because I was on vacation. Therefore, I had a lot of makeup homework. To say the least Pie was SUPER stressed out! Five hard classes and enough homework to sink a ship. That Thursday, my horse died. It was one of the worst experiences I have gone through. I had to complete my homework while doing some hard core crying. Naturally I had a test the next day. I got a cold that weekend! Even through all of this I still had an awesome weekend because my loving….my amazing….and sweet friends threw me a surprise birthday party! After that weekend I told myself

“I can’t do this. I can’t take all of these hard classes. What if I get sick and miss school? I will never catch up! I can’t even handle missing three days! I normally miss a lot more than that!!!!!”

I talked to my Mom and Teddy and they agreed with my that I needed to drop Spanish III. Spanish is the only class I am taking that I technically am not required to take. I dropped that class like a hot potato. I traded it in for a study hall. Dropping that class made all of the difference! I still have a decent amount homework but I’m not drowning in it.

With POTS I have learned what I can manage and what I have to give up. It’s a hard lesson but one that is needed to recover. If you put too much on your shoulders you will crash. I could see it before my eyes this life being unveiled to me, taking five difficult classes, taking the SATs, and applying to colleges I was going to crash who knows when! But it would surely happen. Would it be worth it? No. I don’t think it would be.

Trust me. In the long run, it’s better to put your health first. It’s not worth getting sicker. Train your mind to weed out what you can and clearly can’t do. I never plan too many things for one weekend because if I do that then I will be jeopardizing my ability to go to school the following week. If you have POTS (or any chronic illness) I feel like it’s natural to start realizing what you can do. It’s more of a HA yeah right I can’t do all of that! Crazy talk is coming out of your mouth right now! (like my reference to Legend of Korra?) ….(do you watch Legend of Korra?)…..(yes, Pie is talking about a nickelodeon show)….(Please, don’t judge me 🙂 )

I’ve been sick a lot in the past few weeks. Three times to be exact. That’s a lot of crappy Pie days. It’s scary because sometimes I question if I am coming down with a virus or if my POTS is getting worse. It’s scary and I hate the feeling of the unknown. But, freaking myself out also isn’t going to fix anything. When you are sick try to give your poor sickly little self a break. It’s really not your fault. Don’t ever EVER think this is your fault. It has absolutely nothing to do with you or me. We were “lucky” or chosen upon from a random force. WOOHOO! We won the raffle to get some supermegafoxyawesomehot chronic illness. Next time I am asking for a super power in my side effects. Because mine are clearly lacking superpowerness. My friends would probably say if I had a superpower it would be napping. I am an excellent napper. I can nap anywhere, any time. I’m not sure if this is a curse or a blessing because napping isn’t really good for us POTSters. I try not to nap often. I only nap when I am sick or when I am feeling well I will nap once every couple of weeks.

I guess I am trying to say just hang in there. I’ve used this analogy before but sometimes I’ve felt that my body is like a plane with a faulty engine and I am a passenger inside. Sometimes the plane flies smoothly but others I am really frightened and feel out of control. I have a  body with bipolar syndromes! One day I feel great the next I have the flu. I’m not bipolar though. That is not one of the syndrome baseball cards I have collected.

My sister and my family light up my bad days. Find things that fill your sad heart with light. It may not seem like much, a silly video sent from Teddy or a funny story my mom tells me but they make my hard days memorable for a good reason. It gives me a reason to laugh and be thankful. Those little things can make a bad situation tolerable. I hate the feeling of what am I going to do. I hate it. Don’t you? It makes me feel miserable! You feel isolated in a puddle of worry and sickness. This sickness can make you feel self centered. It’s not like we have a choice. We have to over analyze normal situations to make sure we are well enough to do them. Anything from working out to going to the movies with friends. Were not self centered our body is just an attention hog.

The next time you ask yourself what you are going to do and how will you manage another day take a deep breath in. It is all going to be okay. I know life can be extremely hard and frustrating but those little things that make you smile are worth holding on to. Our lives can change in an instant so when you are feeling terrible always hold on to the hope that you might feel better in an hour or a day. Try not to focus on the opposite….like in an instant you could feel terrible.

“Somedays aren’t yours at all,
They come and go
As if they’re someone else’s days
They come and leave you behind someone else’s face
And it’s harsher than yours
And colder than yours”

This song randomly popped into my head. Somedays by Regina Spektor. It fits though. Our bodies are not our own, and we are reminded on a daily basis that we don’t have full control over ours. Our souls have a purpose though. A purpose that was planted by God and we have been carrying in our bodies all of our life. It is the one part of you that makes you different. It is Teddy’s love for writing and my love of painting. It is my Mother’s love of helping and consoling others and my Father’s love for healing people. It is my bird’s love for singing and my cat’s love for eating. When you read my last few sentences I am sure something popped into your mind. That one thing that calms your heart. That one thing that tells you that everything is going to be okay. Never forget the part of you that is so incredibly unique. It is there for a reason. Just like you. It is just hides in the shadows of your bad days. But never disappears completely.

 

Love,

Little Ol’ Pie

Catching Colds

Hey hey my fellow friends! Today I am sick in bed with a cold and I was just thinking….it has been a while hasn’t it? So I wanted to touch base and say a proper hello! I am a Sophomore in college now (WOW PIE YOU ARE OLD) and I am a graphic design major. I am learning how to make art just with letters but let me tell you, that is no easy feat. My typography teacher(fancy name for art with different types of fonts and letters and words and stuff) well my teacher is super strict! Who knew there were so many rules when it comes to making graphic designs and posters. Let me tell you I am learning a lot but also trying to figure out how to make ugly words pretty.

My health has been really good lately, minus this week….because of my cold (hence the title). I had a pretty difficult semester last year, I had a crazy roommate. But now I am out! I have a new amazing roommate and I am incredibly happy. I am a happy happy little pie. I sometimes get sick when I pile too many things up in my life! Which is why I am sick currently.

This is my personal warning to you…oh wonderful fellow pots peeps, TAKE CARE OF YOUR BODY. Simplifying is not a bad thing, it is actually a very good thing because It allows you to build up. Baby steps are what keep you and I healthy. Your body will always tell you when it is ready to take on more, but it may get angry if you take on too many things! Then you will have to cancel everything, and you will be sad and come back to me. As much as I love the idea of you wanting to read Teddy and my blog I would rather you be a happy reader instead of a sad reader.

Some random spammer sent a message to Teddy and I with a generic message saying that our blog has a lot of potential and blah blah blah __________ insert  vague comment here and they said we should be more popular. Which I totally agree but I also thought it was funny since the site it came from was the site of a robot! EWWW.

Have you ever seen Jimmy Fallons EW videos? If you haven’t please change that!

Teddy, my momma, my boyfriend, my roommate, and I all quote these videos non-stop. I can’t go a day without saying the word “EW” in a nasally tone just like Jimmy. So kick back, eat some salty popcorn, and watch EW video after EW video. You will not be sorry! But if you are sorry then I for one am not sorry! Because it is my life goal to show as many people as possible the wonders of EW.

Sorry this post is so random, I just suddenly decided I was too sick to go to my club tennis’ practice but not too sick to write. So my dear readers! I hope you enjoyed this sudden, random, and picture-less post! Until next time!

LOVE,

pie

Guess Who’s Back?

My dear Friends! I hope you have not forgotten about little ol’ Pie because I most certainly have not forgotten about you! I have been MIA for a good hunk of time and that needs to change! This last year was my freshman year of college so now I return to you are a wise, mature, worldly, blah, blah, blah, blah, just kidding XD I am still me! I just have one year’s worth of new experiences to add to my list. It is summer time and I was randomly thinking about Teddy and my blog and it hit me that I hadn’t checked up on you all in quite some time! I was wondering if you have any questions in particular? Do you have any POTS related questions? Or college? Or love? Or staying positive? Or exercise related questions? ANYTHING you need some advice on! I don’t care if it is about what shirt to wear today or what movie to see. Teddy and I love helping out (Granted, I am not sure how helpful it is if I help pick out a movie for you….but I am more than willing!). We want this blog to relate and pertain to your life! We want to be able to help you in any way we can. We live with POTS and have individually lived with many different stages of this illness and we want to help you in whatever stage you are at 🙂 We send our love and keep us posted on what you want to see in the future!

Much love,

Pie

Daily Distraction: Welcome to Night Vale

My dear readers, 

this is perhaps, long overdue. As I was lying in bed this afternoon, too tired to read, talk, or do homework, I needed a distraction. This will not be a long post, as typing is a little laborious. I am predominately well, and Pie is extraordinarily well. She is thriving at her college, and misses blogging. She is living, and living abundantly. As I hope for all of you. I have many more good days than bad, but as you know, getting well doesn’t mean you don’t have bad days, just fewer of them. 

Welcome to Night Vale is a fictional radio show that is distributed as a free podcast on iTunes. It’s set in a little town in the South West where all fantasy, science fiction, and conspiracy theories are possible. It’s a little morbid, tongue in cheek, and soaked in the macabre. Above all, it’s whimsical and very restful. And the fandom is pretty exciting. I’m on the 10th episode and still enjoying it. If you need to be a little more intrigued, read this post and admire the pretty pictures:

http://www.buzzfeed.com/sedem/the-42-stages-of-welcome-to-night-vale-addiction-cjrb

“A friendly desert community where the sun is hot, the moon is beautiful, and mysterious lights pass overhead while we all pretend to sleep…” Welcome To Night Vale, Episode One

The main reason I like it, is that it fits lying down in a dark room with a cup of tea, ever so perfectly. It’s distracting, his voice is melodious, and the music at the end of each podcast is a fun mixed bag. Plus, it’s witty and you don’t feel pandered to in your weakened state. So, go on iTunes and download them. I think you’ll find it enjoyable. Do you have any podcasts or distractions to recommend a tired Misses POTS? 

Be Well,

Teddy

Fashion Gurus

Style the missespots

Hello my fashionable friends! Pie here! I thought it would be a splendid idea to share with you one of the things that has been making me a happy pie! A couple months ago I discovered fashion gurus on youtube. What is a fashion guru? I didn’t know either! Basically it is when someone dedicates their youtube account solely to fashion, makeup,tutorials, and such. Their videos range from make-up tutorials to do it yourself tutorials to fashion hauls. Fashion hauls are my favorite because I am not obsessed with makeup at this point in my life. This might change but for now I am really enjoying the jewelry and clothing. As you may or may not know…I make jewelry! I love seeing different types of jewelry without having to go to the mall. And like a lot of girls I like cute clothes. It is nice knowing what stores have what and learning about the latest fashion trends. I wanted to share with you my newest findings.

I only know a few people with POTS but collectively we all find that we need some sort of distraction to numb our brains. Things like video games, the interweb and television. I watch these videos when I am taking a break. Shall we start??

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First! Michelle Phan

http://www.youtube.com/user/MichellePhan?feature=watch

here is your linkage! She is one of the most well known of the fashion gurus I am going to introduce you to. Her knowledge of makeup and style is amazing. On her channel she shows her viewers how to achieve impressive costume makeup and also so many cute little beauty tricks and tips. She even has music videos!  Out of all of the people I am showing you today Michelle knows the most about beauty.  I totally recommend her! She even has the right voice. For me personally I can’t listen to youtubers that have irritating voices! They drive me crazy…as mean as that sounds. Michelle’s voice is calm, cool, and collected. She makes makeup seem easy and fun. It is her canvas! I love it! Here is a little video to get started!

arose186

Second! ARose186!

Arden is completely hilarious! She is a spunky, stylish, wacky high schooler who loves fashion. Her blog includes everything! Thrifting, make-up tutorials, favorite products, clothing hauls (Which is just showing their newest clothing finds), DIY’s, outfit of the days, and much much more! I will admit sometimes I don’t know how she can pull of the crazy clothes she buys! But she manages!  She will make you laugh! I love her energy! She has hundreds of videos! Her channel gives you the opportunity to pick and chose what fits your taste. Here is a little introductory video! Who else could better explain Arden than..Arden?

Clothesencounters

Third! Clothesencounters

http://www.youtube.com/user/clothesencounters

Jen’s style is extremely unique! She is one cool cat. A lot of her wardrobe consists of thrift store outfits and she rocks them. She and ARose186 both love THRIFTING and are very successful in their findings. She understands how to make old clothes stylish and work for you.  I don’t know how to explain this but Jen is the kind of girl you want as a friend. She has this easiness about her personality and an inspiring outlook on life. She is fashion forward and like the other two ladies she also has GREAT VIDEOS!  Here is a little push to get you started

Michele

Fourth! Michele1218

http://www.youtube.com/user/michele1218

Michele is the person who got me hooked on beauty videos! She is not to be mistaken for Michelle Phan (different person) I will admit I can’t relate as much to this Michele because a lot of her clothes are for the working woman. And me, being a high schooler who babysits….can’t relate. Doesn’t mean you won’t! I still really enjoy her site! She has the largest makeup collection I have ever seen….come to think of it she has a lot of large collections! My favorite parts about her channel are her jewelry and her clothing hauls. She is adorable! The things she buys on  are a little bit more on the pricey side. It is still really fun to watch! Surprise surprise here is a jewelry video by Ms. Michele herself!

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Fifth! EssieButton

http://www.youtube.com/user/essiebutton

Essie is funny 🙂 I like her so much. She is adorable! She is constantly acting like she doesn’t know what she is doing filming beauty videos but she is so good at it! I feel like I am talking to a friend while watching her videos. I just discovered her the other day. Her awkward nature is endearing. She lives in the UK but is from Canada. So she says aboot like a good Canadian! And also probably says sorry as sohrry (My friend asked me if I was canadian because of how I say sorry) Here is the first video I ever watched by Essie! Enjoy!

http://www.youtube.com/watch?v=Tyrd_Bt8pvE

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I give you five new friends! To help you on your journey of fashion! I totally understand if you don’t get hooked on each one, I just hope that at least one will fit your style. Do not feel too overwhelmed with all of this linkage, that is why I stuck to only five links. Five completely different woman who make fashion even more fun! It is like having our very own team of project runway designers at our fingertips! YAY! You can still do things in your life to make yourself feel beautiful! I know some days it is hard to even leave the house. I wear P.J.s 90% of the time. Teddy lately has been prancing around in all sorts of adorable outfits, hairstyles, and makeups. It is really fun looking nice for school or an outing! A cute outfit or hairstyle will make you feel better! You might even get a boost of energy alongside a boost of confidence! Just because we have an invisible syndrome it doesn’t mean we have to feel invisible or unattractive. In actuality we look pretty normal so….we can still look supermegafoxyawesomehot even if we feel like CRAP! Take that world! Here we come. If you can’t take that step yet, order an adorable pair of pajamas and rock them around the house. The other day I found a pair of pajamas that were….wait for it….pink and covered in cats! I know how cool am I? They are awesome! I am a big fan of them! It’s all good when you are wearing a bucket load of cats on your pants. What could be better? Nutthing that’s what!

Thanks for reading my dear reader! You make Teddy and I so happy! It is the best feeling in the world to come home to a new comment or follower! Thanks for adding sunshine into our lives! Good luck tomorrow! Mondays can be hard! Have an amazing week 🙂

Lots of Love

Pie                       P.S. This is one of my own drawings/ paintings down below! I thought it fit the theme of this blog 🙂

Summer Vogue by NPB

Shout Out

MIK's dysautonomia hidden heart alliance

Hey guys!

This is Teddy. I haven’t mentioned this in the past, but I follow a bunch of fellow bloggers on wordpress. Some of which are you, dear readers! Anyways, there’s a blog from a Texas family that does events to help POTS teens in their area! It’s really awesome. If I lived closer I would definitely participate. One of their events this week is a questionnaire about what it’s like and how you’ve grown through your POTS journey. It’s called “Be one of our featured bloggers”! This is a great opportunity if you don’t have a blog, but want to share your story. Or (if you’re like me) are inspired by the questions and want to support young men and women across the web who feel like they’re alone. I put the link directly underneath and I hope you guys fill it out!

http://mikshiddenheartsalliance.wordpress.com/2013/02/23/dysautonomia-teens-be-one-of-our-featured-bloggers/

Since I already have a blog, I’m guessing they probably won’t choose to feature me. So I decided to just post my answers on here, as well as sending them in.

logo

Guest Blogger for MIK’s Hidden Heart Alliance For Dysautonomia

We would love to hear from you!  Fill out the questions below, include picture(s) and email to:  info@mikshiddenhearts.org.  A big thank you to fellow blogger Dysautonomiac for the question inspiration : ) 

1. The illness I live with is:

Postural Orthostatic Tachycardia Syndrome (POTS)

2. I was diagnosed with it:

I was seventeen and diagnosed at the Mayo Clinic in Rochester.

3. I first noticed my symptoms when :

 16, I got out of the bathtub one day and the next thing I know I’m on the ground, naked and shivering, trying not to pass out. I didn’t know I was lightheaded or sick. It just felt like my mind was floating a good two inches above my heavy head.

4. The biggest adjustment I’ve had to make is: 

 Hah, asking for help. I’m bullheaded to the extreme and there are some days I pretend to be strong and able to carry a heavy package or go down a flight of stairs. It doesn’t usually work, and my good friends have learned to intercept my stupidity.

5. Most people assume:

 That I have a phobia of stairs and love high, flamboyant socks.

6. The hardest part about “not so good” days are:

 Feeling like I am a burden on everyone. That I haven’t accomplished anything and the day was a waste.

7. Prior to me getting sick, I liked to:

Play tennis. I was the team captain and number one girl player in high school. Last time I tried to play I ended up in bed for two weeks it made me so ill.

8. A gadget I couldn’t live without is:

 My laptop. I named him Giles from Buffy the Vampire Slayer. He’s incredibly useful for the days I can’t move and need something to do.

9. The hardest parts about the nights are:

 Needing to go to bed at around 9:00. In college, no one goes to sleep until about 1 in the morning and I always feel like I’m missing something.

10. Each day I take approximately __ pills & vitamins. 

 15

11. Regarding alternative treatments I include:

 Massage, weird muscle building exercises my dad comes up with, anti-embolism stockings, and a high sodium diet with lots of water.

12. If I had to choose between an invisible illness or visible illness I would choose:

It depends on the day. When I feel truly sick and someone walks by and tells me how great I look I tend to get a bit snarky and wish they could see what I was really dealing with. In some ways, I’m glad that it’s invisible. It means I can fly under the radar and can choose whom I tell. Then again, I’ve been lucky. When I’ve chosen to confide in people I trust, no one has ever doubted it’s a legitimate problem and I’m not just being lazy. Having an invisible illness is the best and worst thing about POTS.

13. Regarding school, I am homebound/homeschooled/attend at school and I find this:

 Frustrating. Being too sick to have a full class schedule makes me feel upset and anxious that my brain is going to mush. I’m taking two classes from the community college now and it’s getting a little better.

14. People would be surprised to know:

 I really hate cucumbers and watching on-screen kissing. It just grosses me out.

15. The hardest thing to accept about my new reality has been:

 Feeling out of control. I had to really look at myself and realize that just because I couldn’t do something it didn’t mean I had failed.

16. Something I never thought I could do with my illness that I did was:

 Blog. My sister and I have a blog called “The Misses POTS” (https://themissespots.wordpress.com/) I never anticipated the blessing that it turned out to be. Every single time someone liked, or commented on a post saying “I feel the same way” was this incredible validation that all our struggles and work meant something.

17. I feel that the general awareness about my condition is:

 Getting increasingly better. I’ve met people like nurse practitioners at my school who were completely aware what my condition entailed and were incredibly sympathetic. That, plus there’s been this huge surge of bloggers in the past few years that are really optimistic and informative. We started out being one of the only blogs that tried to explain our condition as well as embrace our lives. Now, there’s a ton. My blog roll gets longer by the day.

18. Something I really miss doing since I became ill is:

 Tennis. My whole family plays all the time and I really miss that competitive camaraderie.

19. It was really hard to have to give up:

 Cheese and chocolate. POTS gave me a stomach problem that meant I have to be really careful with my diet.

20. A new hobby / goal I have taken up since my diagnosis is:

 Cooking. It takes me a bit longer since I have to rest in the middle of recipes, but I love it. It gives this incredible sense of accomplishment.

21. If I could have one day of feeling normal again I would:

 Get up early to go to church, and then make an elaborate brunch with my family and friends. A huge game of Ultimate Frisbee with my friends from university would follow that would last for hours. Later that afternoon I would read a really great book. That night I’d play a great game of RISK/Settlers of Catan/other take over the world game with my brothers, sisters, and cousins. Then, I’d go and get a midnight burrito at the base of my university.

22. My illness has taught me:

 How little control we actually have over our lives. And how much of a blessing it is when we do get to succeed in a small aspect of it.

23. Want to know a secret? One thing people say that gets under my skin is:

 “You look great! Are you a lot better now?”

24. But I love it when people:

 A family friend said the other day “You have done a wonderful job of making yourself look well.” She gave me a hug and it was so flattering that she realized what an effort it is to look pretty.

25. My favorite motto, scripture, quote that gets me through tough times is:

 “People are often unreasonable, irrational, and self centered. Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives. Be kind anyways.

If you are honest and sincere, people may deceive you. Be honest and sincere anyways.

What you spend years creating, others could destroy overnight. Create anyways.

If you find security and happiness, some may be jealous. Be happy anyways.

The good you do today will often be forgotten. Do good anyways.

Give the best you have, and it will never be enough. Give your best anyways.

In the final analysis, it is between you and God. It was never between you and them anyways.”

-Mother Teresa

26. When someone is diagnosed I’d like to tell them:

 The first year of being sick is not indicative how the rest of your life is going to be. I promise. The friends you will lose due to misunderstanding, you will gain back. All those things you have to give up, some of them you will eventually learn how to incorporate back into your life. Not all of them, but some. And you will realize things you love you would have never known about if you were as active as you once were. Make sure you realize we are not entitled to health or happiness. Every clear thought, every happy moment, every day you can do some exercises, is a blessing. Treat it as such. They’re small victories. And every time you are stuck in bed for days on end, or have to cancel a Skype date or meeting with a friend? They’re not failures. They’re not your fault. You are not to blame. Be open with the people around you. Shutting out the world will just make you hurt all the more inside.

27. Something that has surprised me about living with an illness is:

 You can’t just “get through it” or pretend like your body and feelings don’t matter. You have to tell people how you feel and respect your body.

28. The nicest thing someone did for me when I wasn’t feeling well was:

 There have been so many, it’s impossible to pick one. When I got seriously ill this fall and had to go home for surgery, I had this outpouring of love. The kids I taught Sunday School made home made cards, my best friends at school helped my mom pack up my dorm room for me and made a poster with little notes, jokes, Bible verses, and conversations all over it. I definitely cried when I saw it. I’ve never felt so loved by people outside my family before.

29. The person(s) who has been there for me and I could not do without is:

 My mother. She can read my face like a book, and if I’m the least bit pale she rushes off and gets me something to drink like a Gatorade. Plus, she’s endlessly supportive and has sat in every waiting room with me. My family in general is incredible. My dad constantly has a new idea to add to my exercise regimen, my sister Pie never lets me drive when I feel a little sick, and my other brothers and sister are just really supportive and loving. I’m so grateful I’ve never had to try and prove I’m sick. They just believe me, without question. Also, I have a group of friends who text me every single day, and Skype me every week. I love them all so much.

30. The fact that you read this list makes me feel:

Hopeful that someone can remember we don’t stop being who we are just because we’re sick. We don’t stop being important or part of God’s plan.

BLOG

I also wanted to send a shout our to fellow bloggers (POTS or not) that I follow and enjoy reading, so I think I’ll start a blog roll (super behind the times on this one). Until that happens, these are some great blogs!

Stretchy Hannah A sincerely nice girl who lives in England with POTS and EDS. She’s awesome, and is really upbeat without avoiding the messy stuff of life.

Mik’s Hidden Hearts Alliance For Dysautonomia I don’t generally read this one as much, but if you’re considering starting some sort of POTS community you should take a leaf out of their book! It’s really great for inspiration.

The Brain Hamster This one is hard to explain. The author is a sci-fi writer who explores his Christian faith as well as a really funny and wry view on life.

Elegant Ellie’s Personal World Ok, this is a girl who I would definitely want to be friends with in real life. She’s witty and cynical and has fantastic taste in literature, music, and TV shows. Plus she collects medical problems like no one’s business so I think a lot of you guys would have aspects of her life in common. She posts a couple times a day it seems like, she’s definitely been getting me to write more.

Got No Milk Lots of recipes for those of us who have trouble with eating high fat food, or just dairy products in general. I actually followed this before I had belly problems so…. beware. It might cast a curse upon you.

Suzie Sweet Tooth To heck with eating things that don’t make me sick. To heck with health foods! This blog is AMAZING. Every bakers dream. Right here.

FISBI *cough* this one is a little awkward. I love Sim blogs. They write stories using screen shots from their sim accounts. This writer is my favorite. I could have included maybe five more like hers, but I thought she was a good representation.

Heatherhdoucet a sassy POTS mother who always makes me laugh with her posts.

Letters From Wiscalia An actual friend in real life. She’s just starting to blog so if you want to pop in and give her some tips or encouragement that would be great!

Dignitas Magazine A magazine for young Catholic women. The articles are actually amazing and the pictures beautiful. They haven’t published in awhile, but I’m holding out hope!

Well, that’s all I have for today. Adieu!

Be Well,

Teddy

cogito ergo blog