Full

First, I would like to start this blog post by saying “Hoppy Easter.” Macy is sitting in my lap right now and wanted me to include a cute animal pun.

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The change in weather in the DC area has been crazy lately. This is a huge annoyance because it’s made me more symptomatic. Fall has become my favorite season since the temperatures are typically pretty mild, and there doesn’t seem to be as much rain as there is in the springtime.

This summer will be my 5 year anniversary with POTS. Did you know that a 50 year anniversary is called a “golden anniversary?” I guess you’re typically supposed to get your significant other something made out of gold. My brain is a funny thing and works really quickly jumping from one subject to the next, so I somehow got to thinking about that and wondering if a 5 year anniversary had a name. After a quick meeting with Google, I found that silverware is the token gift for 5 years. I couldn’t help but grin since I often feel like I don’t have enough spoons throughout the week. This is a kind of cruel irony.

One of the hardest things about having a chronic illness is just the simple fact that life is more drastically unpredictable than the average human’s. You often hear someone with a chronic condition say that they are having a “good day” or a “bad day,” but either way it will pass and there will be another kind lined up and ready to take its place. POTS has taught me to really enjoy moments, especially when I get to do something out of the ordinary that might cause a lot of joy — and bring with it a lot of pain the next day.

I write about pain a lot more than I ever talk about it because I do want to enjoy my life and have the little moments that make life so beautiful. Regardless of feeling crappy right now, I want to remember that four years ago my life was being lived horizontally. I do feel really blessed that I can walk, sit upright, and enjoy so many amazing things that I do take for granted. A few years ago I couldn’t stand more than a minute at a time without fainting, and the only time I really left home was to go to the doctors office or to the gym for my daily recumbent bike routine.  The thing I find most interesting about this is that I have really fond memories even from way back then. The amazing part of being an optimist and looking at the glass half full is that I do remember how shitty I felt, but it isn’t at the forefront of my mind when I think about being 23 years old. I think about watching Top Chef with my mom and dreaming about being able to cook again one day. I remember making “Dunkaroos” with Goldfish and salt because I couldn’t figure out another way to eat enough, and I remember close friends coming over and sitting on the couch with me and telling me stories about what their life is like post college. I remember sitting with my passenger seat reclined as my dad drove me two miles down the road to do my gym workout, and the stories we would tell each other back and forth. I remember him telling me I would get better one day, and my mom playing “Would You Rather” with me when I couldn’t sleep at night. I still have the memory of lying down in the middle of the movie theater floor so I wouldn’t pass out while waiting in line for popcorn with friends, but I don’t remember the extreme nausea and dizziness from that episode anymore. Now it’s a kind of funny memory, and I wonder how there was a time I didn’t feel embarrassed to be the center of attention for something so out of the ordinary. In fact, I feel lucky that I get embarrassed about POTS things now. This means I am healing and major health complications are not a regular part of my day.

Tonight I am stiff, sore, and ready for sleep. My shoulders hurt from a long week and I am ready for the pain to subside so I can get a good night’s sleep. Instead of remembering this feeling a year from now, though, I know that I am going to remember what it was like going out on a fun double date and reminiscing through old college memories, rather than how badly my shoulders hurt or how tired I am of “working to get better.” I know that one day I will be a lot more normal because I am still making improvements, even if they sometimes feel small.

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I don’t know whether looking at the glass half full is something you’re born with, or an outlook you develop, but I am so thankful that I have that ability in my life. I know sometimes it can be easy to feel frustrated or wonder why you got the short end of the stick in one way or another, but the way I see it is if a glass is half empty, it is because you enjoyed something from it, so there is something to be joyful for. Glasses are things that are meant to be filled and emptied, kind of in the same way that life sometimes has its ups and downs. We may not have the ability to control everything that happens in our lives, but we can learn to control our outlook, which is actually one of the most incredible and worthwhile things a person can do. Life isn’t always easy or fun, but there is always something to be joyful for — you just have to learn how to look for it.

I’d Like To File A Complaint

Do you ever find yourself really annoyed because you find yourself complaining about something really trivial like being stuck in traffic or not having any milk keft in the fridge?

That’s how I feel today. I went to a concert last night at my alma mater, and my lower back is k i l l i n g me. I think I hurt myself from standing too long and not wearing the proper shoes (read: sneakers), which sounds ridiculous but is life with EDS in a nutshell.

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Really, though, my brain is functioning well, it’s rainy and I don’t feel super symptomatic, and my heart is content. My main issue is that I am medium-grumpy today. The pain is getting on my nerves, and I feel frustrated that every time I do something fun and different I have to take it easy for a few days after, while my friends can keep going and going without any problems. I am annoyed at my body for not just being normal — the way it used to be — and I hate feeling like a grandma at 27. Everything takes so much planning, and I turn down certain plans that I want to do, just because I have to weigh how much I have going on the entire week, rather than just a single day.

So, since I am bitching about a million and one things right now, I want to take a minute and realize what I should be thankful for.

I can get up off the couch and walk around. I have feet, legs, and arms that all work. My heart works twice as hard to keep me alive, but it’s pumping and keeping me going! Most of my organs are a bit goofy, but they are all working overtime to make sure I can keep living, and I am so, so thankful for that. I have a wonderful family who loves me, the best fiancée in the world, and amazing friends. I am doubling my family this fall, I am not allergic to chocolate (I count this as a blessing, as I developed a bunch of food sensitivities as an adult), and I have a roof over my head and never go hungry.

I could go on and on about more beautiful things in my life. Dogs make up a great number of blessings, and sunshine, birds, butterflies, and heat are just a few more. Candlelight, snuggling, soft blankets, The Office, country music, buttercream frosting, gentle massages, writing, decaf coffee, warm memories, Pinterest boards, glitter, loved ones’ sweatshirts, snail mail, flowers, dog tags, and a diamond are just a few of the beautiful blessings life has given me.

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As much as I want to complain today, I am going to allow myself a minute of being annoyed, and then just let it go. My pain isn’t an 8 or a 9 today, and I can handle everything that I have on my plate. I just have to turn my frown upside down and enjoy the simple pleasures until I can go out into the world again and take on the next adventure.

Today’s lesson: The next time you want to punch a wall because you’re frustrated about something, take a few seconds to count your blessings. It helps put life into perspective, and makes you realize it’s an enormous waste of time to be grumpy when you can learn to be content instead.

Love And Pain

Pain and sickness are really difficult things to write about. Trying to describe things you’re feeling but  many people have never dealt with before is essentially attempting to put pen to paper about the way butterflies feel in the beginning of a relationship to someone who still has yet to experience it. You can use the right words, but they won’t really connect until they have something to relate it to.

For example, think about the way some of your first crushes felt, versus how actually being in love feels. They both have the same warm and fuzzy feelings as a base, but feel drastically different. That’s how I would compare temporary short-term pain, such as an injury or a broken bone,  to chronic, long-lasting pain. I’ve experienced both, and before getting sick I wouldn’t have had anything to draw from to compare to the new exhaustion chronic pain brings. You don’t ever get a break from chronic pain. Even when you can kind of ignore some of your problems on your good days, the bad days are right around the corner. I do a great job of not thinking too much about that when I am well, and I’ve gotten really good at living in the present when I can. Then, the bright side is that on bad days I know a good one just has to be right around the corner. Chronic pain is a vicious cycle, though, and wears you out to your core. Not only does everything hurt, but you also are always so incredibly tired from not being able to sleep. Whether your body is annoyed from being tense and having your muscles screaming at you all day long or your brain keeps you up thinking about the pain you’re feeling, you don’t get good rest. I don’t remember the last time I got in bed and just fell right asleep. It’s been years.

I’m constantly sending articles and trying to pull up scientific findings about my conditions to people I love because I want them to understand how I feel. God, I want to be understood. I hate feeling cranky because of my pain or having days where I can’t stand it anymore and just break down and cry. Granted, the latter are few and far between, but sometimes my body just can’t take anything else and needs some sort of outlet. Talking isn’t my best one because I want to help other people feel happy and good, so I don’t like to complain — or maybe I don’t know how to complain properly; I haven’t quite figured that one out yet. I love to write, but I don’t always have the strength, and frankly I don’t want to leave behind troves of essays on how much my body hurts.

I just don’t feel like anyone I’m incredibly close to has been in a situation quite like mine, and it’s minorly heartbreaking knowing that yes, I always have a shoulder to cry on, but I don’t have anyone who really gets it and can tell me that they know how I feel. That’s why I am motivated to write about my struggles. 

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Don’t get me wrong; I don’t want anyone I love and care about to ever understand chronic pain or any other kind of difficulties in life. One thing I’ve always been thankful for is that I’m the one with this problem. I would gladly take every pain away from the people I care about if it meant they didn’t ever need to face it themselves. Not only do I feel like God gave me a strong heart and will to keep pushing forward, but I think He gave me a beautifully optimistic outlook on things, and I’m really grateful for that. I think I’m handling the hurdles I’ve been thrown the best I possibly can, and I actually think that despite being a painfully average twentysomething, I am exceptional in accepting the negative things in life as a reality and then figuring out how they can turn into a blessing — or at the very least, something that doesn’t consume me. I have always said that I may have POTS, but POTS doesn’t have me. The same goes for my chronic widespread pain; it’s a big part of my life, but there’s no way in hell that chronic pain is going to take my entire life from me. I will count my blessings until the day I die, and today those are my loved ones, dogs, chocolate, Taylor Swift, Brad Paisley, and each and every one of you. 

I’m At An 8

This month I’ve had a very rude awakening about just how much physical therapy helps me. As someone with POTS and EDS, I have lots of chronic pain, particularly in my upper body and limbs. Whenever you go to the doctor or physical therapist, they ask if you can rate your pain scale from 1-10, 10 being completely unbearable. I’ve had very wide ranges, but the more I am able to go into the office and have hands-on work done, as well as doing my monitored strength and mobility exercises, the better I typically feel.

This article about exercising and living with EDS is well written and super-relatable. My insured PT visits ran out this month and I’ve only been a little over a week without care, but my pain levels have quickly shot up to an 8. I can’t focus on anything entirely because of how much everything hurts, and I can’t do the activities I’ve worked up to because of how much it hurts my shoulders and arms. Sleep is the only thing that relieves my pain right now, and I need to get back to my therapy sessions as soon as possible so that I don’t lose the progress I’ve worked so hard to get. It’s so frustrating living in a body that depends so heavily on doctors and working out the right way, but the thing that is the most difficult isn’t the time or effort put into all of this; rather, it’s the expense and toll this unwanted illness takes on myself and my family. I’ve always tried to remain positive and focus on the good in my life without allowing myself to dwell on the fact that it’s not fair for a young twentysomething to be sick, however it’s a lot more difficult when I feel like everything in the healthcare world is working against me. I don’t want to debate politics on this blog — ever — but one thing I do want to touch on is that I very strongly believe that people with disabilities should be cared for and given as much help as necessary to have as much of a chance at normalcy as possible. “Normal” hasn’t been attainable to me yet, but I feel blessed enough to not constantly have sharp, intense pain that I am grateful for the help I do get through physical therapy.

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In the meantime, I’m going to continue to do the best I can by doing my gentle stretches, mobility exercises, and managing the pain the best I can until January comes when I can get back in a normal routine. I have a pretty big doctor’s appointment today, and am hoping to get some relief from my pain tomorrow, so if you could say a little prayer for me that would be amazing. I’ll be back on this little corner of the Internet soon, but wanted to write a quick update about what’s been going on lately since I haven’t been great at keeping y’all updated. Love and hugs to you all.

Life As A Burden To All

I would be lying if I said I wasn’t sometimes insecure about having a chronic illness.

I often try to hide my pain and symptoms, even from those I love most. First and foremost, because I want to try to ignore the fact that my life isn’t the way I wish it was. A part of me feels like if I try to shove all my frustrations with being sick deep down that some of them might disappear. Maybe if I close my eyes and pretend I’m not dizzy or hurting one day I’ll wake and that will be my reality.

Second, I hate sounding like a broken record. I’m in pain every day, so if I voice my discomfort people will get sick of being around me really, really fast. It’s kind of like when someone runs a race and keeps talking about how sore they are; it’s completely valid and understandable, but after being reminded for the fifth time that their legs hurt you wonder if they think you are hard of hearing. No one wants to hear about how I have sharp, painful triggerpoints in my shoulders or can’t load the dishwasher because it hurts my forearms to grip anything for more than a minute or two.

Third, I feel broken. I sometimes wonder why people still care about me since I can’t go out and have fun like a normal 26-year-old. I can’t give the acts of service to my friends and family that I’d like to, I don’t have a normal 9-5 job, and I need help with things that others do mindlessly on a daily basis. My parents have taken care of me since I got sick, and it’s been really hard to rely on others to do things that I want to be doing for myself. I’ve always been pretty independent, so giving up control in my life has been one of the toughest tasks.

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My heart hurts because my head isn’t affected by this illness. I want to be able to run, dance, and crank out dozens of pages of words at a time. I want to be pressured by the journalism deadlines that were once the bane of my existence, and I wonder why my body has betrayed me and doesn’t allow the vigorous work ethic I once prided myself on. It hurts feeling like this illness hasn’t just taken some of my hobbies, but it has also stripped me of having a purpose on this earth. 

That’s lie #1 I was fed when I first got sick. Deep down I know it isn’t true; I actually believe this is Satan’s disgustingly twisted game of trying to make a very complete and beautiful soul feel worthless. Worthlessness is a dangerous feeling because it’s based on a lie that only seems real to the person feeling it. I strongly believe every single person placed on this earth has a purpose they are here, including myself. I think each human being can add invaluable love, kindness, and strength to the world if they choose to give it. Each individual has some sort of special “X factor” that they can offer people in their life.


God wrote in Psalm 139:14 that each and every one of us was fearfully and wonderfully made. This means that we were made with His very own heart taking an interest in us, and that He made us different than anyone else. It means He cares about us more than we could ever understand.

That being said, I know so many others who are also different in one way or another and have had this feeling on some level. The next several weeks I am going to be completely smashing this fabrication and showing that the feelings of worthlessness are based on a complete lie. Whether or not you are a regular reader or you’re new here, I would love if you would be patient and stick around until I get to the main point of these posts. This message is so important, and I want to connect to your heart and help it listen to how I have begun to debunk the lies that the evil in the world wants us to believe.

In case you don’t come back, just know that you are a valuable part of society and you can make a much greater impact than you even realize. God gives incredible blessings to those who keep pushing forward and He can create a really beautiful masterpiece from brokenness. You just have to stick around to see what the beauty in your hardship is. Sometimes it won’t be as obvious as you might hope, but He sprinkles light into even the darkest of stories.

Forever Is A Long Time

When I first got sick with POTS, I asked the nurse if this illness would last forever. She told me yes it would, and I felt sick to my stomach. Tears streamed down my cheeks like they never have before — I’m someone who tries to hold them in until they just spill out — and for the first time in my life the future looked like a deep, dark hole.

Forever is a heck of a long time to have something new and frightening. I couldn’t walk ten feet without feeling like someone was spinning me around on a desk chair, and I didn’t want to keep living a life like this. I felt so much regret for the moments I had a working body and didn’t appreciate them. I regretted the many mistakes I’ve made as a human being because I felt like my illness was punishment for being a sinner. Most of all, though, I felt scared.

The best advice I got when I was diagnosed with POTS was to take each day and every hour as it came to me. My mother wisely told me to be gentle with myself, take care of each need as it arose, and ask for help whenever I needed it. The first year I was sick I asked for help with everything. I couldn’t walk to the kitchen to fetch myself a snack sometimes because I would faint (due to insanely low blood pressure) from not having enough salt. All I could really do was watch television, talk to friends, and eat. Even sleeping was difficult, despite being exhausted every hour of every day. I was too afraid to pray until I was so worn down all I could do was sit on the bathroom floor and cry out to God. I didn’t know how to ask to be healed, and I was angry with Him for selecting me to be a victim in something I didn’t even know was possible to happen to a 22-year-old. At least not to me.

My relationship with God is slowly being repaired. As I’ve gotten older and looked back on my experiences, I’ve realized that God wasn’t punishing me for anything by letting me get sick. I still don’t understand how illness works — I don’t know why He doesn’t always heal us when I know He can. That’s something that still breaks my heart sometimes when I think about it, but I try to remember the good that has come from this. Every dark story has light in it, even if it just starts off as a tiny little shimmer. If I hadn’t gotten sick I wouldn’t have met Robert. That’s an amazing enough change in my life that I feel blessed by it and wouldn’t change anything for the world. I wish I could tell that story in a blog post, however it would take too many words to put down on a screen.

I wouldn’t have created this blog if I hadn’t gotten sick. I would be working for a magazine instead, and I wouldn’t be able to have a platform to speak about whatever I want on. I have deep convictions that are so close to my heart, and I want to help make this world a little easier for everyone to be in. I want my legacy to be making people’s hearts be warm and secure. I want people to feel less alone in this amazingly tiny world. So despite how it sometimes feels, God hasn’t left me alone; I think He is just trying to use me through my hands, my voice, and my keyboard by making my pain turn into a light for Him. I still don’t know God nearly as well as I’d like to, but I know He’s trying so hard to get through to my heart. I know He is fighting for me every day, and that He loves me even when I mess up. Please know that He loves you too. Please don’t ever feel like your mistakes have created the dark things you have in your life today. Know that there is a light at the end of your tunnel, and that a blessing will come, sometimes in disguise, when you least expect it.

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Today’s lesson: Whatever you slap the “forever” label on that seems scary and daunting, please take it off. Know that our souls are forever, and God is forever, but sickness and pain don’t have to last forever. There is beautiful grace that is ours for the taking. I’m trying to learn how to get it. I’m starting small, by trying to connect to God just a little bit more than I have before. I will keep you all posted on my journey, and I will use this as a way to stay held accountable for working toward something that seems scary, but will be the biggest blessing I could ever think of.

Handicapped? Really?

One thing every single young chronically ill person will tell you about is the incredibly frustrating battle that comes with having an invisible illness. We are constantly trying to regain normalcy in our lives, but also have to roll with the punches through the symptoms our illness brings along for the ride. For example, I can’t do many of my favorite activities anymore — let alone even just be outdoors in crazy heat — however, I don’t like being different and asking for help, even when I need it.

Today I went to my alma mater to run a quick errand. I wasn’t feeling particularly great, but I told myself that it would only take five minutes and to suck it up and get it over with. I mapped everything out in my head and went to my usual parking space. It’s one of two handicapped visitors spaces, both of which are always available. I sat for a minute to prepare for my walk up the hill and grumbled in my head about how I wasn’t up to my heart racing today so to just take it slow.

As I began my miniature hike, my heart began to thud swiftly and hard (for those of you who don’t know, when POTSies even just go from sitting to standing our heart literally beats as fast as someone running a marathon… No wonder I’m always so tired!). I walked slowly and carefully up the hill and focused on each step so I wouldn’t trip — that’s just because I’m Krista and a little bit clumsy — it has nothing to do with POTS.

I smiled at two young police officers when I looked up, and as I passed by them I heard one say to the other, “Handicapped? Really?” with a snicker.

My heart stopped — then went back to racing even faster than before. For a split second I was shocked, then brushed it off as my imagination. I always feel embarrassed when people can tell I’m different, and I hate having any sort of extra attention. This makes me feel like people are staring sometimes, even when they’re not really paying too much attention. I had a gut instinct, though, that I needed to turn around when I got to the top of the hill. I wanted to make sure my car was going to be OK in the visitor’s spot and that I didn’t need a university parking pass to be there. Despite having parked at that spot a hundred times, you can never be too careful at my alma mater.

Sure enough, they were smiling and looking at my bright blue sticker with a little black device.

Great, I thought to myself, now I have to trek back down the hill to see what’s going on. 

I wasn’t in the mood to deal with confrontation, but I know how crazy our school was about ticketing, so I wanted to make sure I wouldn’t have any trouble when I came back from my meeting. Deep down I knew it was because of the way I looked, though, that the officers rushed down to check my credentials. I quickly realized that I hadn’t been imagining things with the officer’s remark, and that if he was gutsy enough to say that while I was right next to him, he might be confrontational when I chatted with him about my disability.

“Excuse me, can I help you?” I asked.

“We’re just making sure your pass matches up with your car,” one of the officers replied with a grin. “We know people often take advantage of these spots.”

“I have my DMV card, hang on,” I replied shortly. I wished I had called him out on making a snide remark earlier, but I honestly didn’t think a trained police officer would have been that loud and unprofessional about being so snarky. At least if you’re thinking that about me, keep it to yourself and your partner, don’t bring me into your little joke.

I didn’t smile as I showed my pass. Not smiling at someone when I’m interacting with them is actually one of the hardest things for me to do, but I felt frustrated that I was having to deal with this when I already wasn’t feeling great.

“Okay, good,” he replied. “Thanks. We just didn’t want you to be using grandma’s parking pass to get a better parking spot,” he said. “You know — so we can protect people like you who really need it,” he corrected himself.

Honestly, this part of the interaction bugged me a little, but I don’t fault people for saying goofy things like that anymore. I understand that it isn’t normal to see a 26-year-old who is disabled but looks healthy, and a lot of people haven’t even really had to interact with someone like me before.

The thing that bothers me about the whole ordeal was the way they went about everything. I completely agree that they should check to make sure I’m actually handicapped. People who use the stickers but don’t need them should absolutely get in trouble. The way they went about it was wrong, though. I shouldn’t feel like I am doing something bad by using a handicapped parking space when I need one, and I should feel comfortable using the resources that help make my life a little more normal. I already feel embarrassed enough when I have to park in one of those spots at Trader Joe’s and make three trips back and forth to carry $20 worth of groceries to my car without hurting myself. I hate that people stare at me to try and figure out why I am in that blue space, and I hate going grocery shopping with my mom and having people think I am a jerk for making her carry everything to the car by herself. I don’t want to feel like the people who are supposed to be protecting me are also going to give me grief about being a weak twentysomething.

I realize that the police officers were just trying to do their job, but I also know enough people in that field to know that there is a lot of sensitivity training so that they can be professional while they are on the job. I would have had absolutely no issues with them checking my pass — even right after I left my car — however, making me feel uncomfortable by being snarky loudly enough for me to hear was completely uncalled for. In hindsight after talking to a few people about it, the officer more than likely wanted me to hear his comment, as he waited until I was 200 feet from my car and right next to him, and thought he was catching me in the act of something I shouldn’t be doing.

I didn’t write about this to shame the police officer or have a pity party for myself. This is just such a perfect example that you never really know what someone is going through unless they tell you. I look fine, and if you stuck me next to a dozen other twentysomethings you would never guess that I was the sick one. I hope this story helps people be more gentle towards other human beings, as you never know what someone else is dealing with.

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Another reason I wanted to write about this to raise awareness about invisible illnesses is because not everyone with a chronic illness is as bold and open about their problems as I am. A few years ago when I first got POTS, my mom had to be my advocate because I couldn’t even stand without getting incredibly sick. People who are going through things like that should not have any extra obstacles that could easily be avoided, so I think it’s important for me to speak up about my experiences in hopes to better the lives of others who are chronically ill and don’t have someone to advocate for them. A good lesson from all of this is to be kind to everyone you meet, and never make assumptions based on the way someone looks. I am going to be writing a letter to the police department so that they can hopefully be better equipped to deal with others who are like me on campus.