You Up?

My arms are killing me right now. I am beyond exhausted, but I can’t seem to fall asleep. This can be a common problem for people with all sorts of chronic illnesses, or even just regular people with stress. My problem is that I am sometimes worn out from just living day to day life.

I don’t complain to people very much in person because complaining isn’t really my thing. I love being positive, and honestly feel like I am a lot happier when I can look at the bright side of things in life. Sometimes you just fake it till you make it, right? This can be a double-edged sword, though. It’s wonderful because I can keep my relationships light, and add more joy to both my own life and the lives of my loved ones. It’s hard, though, because I feel like the less I talk about my symptoms, the more they are just forgotten.

You can’t see when I’m dizzy or nauseous or in pain. I have said it a million times, and I’m sure I’ll keep chatting about it on here — you cannot see signs of invisible illness. If you look closely, you’ll notice the bags under my eyes have become darker and deeper the past several weeks. I look in the mirror when I take my makeup off and can tell there’s been more wear lately. You can’t see the way my arms feel ropey and knotted, or the fact that my thoracic spine is as stiff as a board, though. I went to a Nationals game a few weeks ago and thought I might faint a few times. I stood and talked candidly about my wedding plans and how I don’t know very much about baseball, but I felt the stadium spinning circles around me as I spoke. It felt like I had left my body and was being twirled around and around on an amusement park ride.

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When my POTS acts up it starts by slowly tightening everything in my chest and heating up my face, then moves to what feels like my body overheating and getting ready to shut down. In the same way that Robert’s gaming computer’s fans started whirring frantically when it was overheating, my body goes into panic mode to try to keep myself conscious by either getting into a horizontal position or rushing blood back up to my brain in any way it can. Sometimes that involves fainting to facilitate the blood flow, but luckily I have learned the signs of when I need to sit down.

Emotionally, I can feel drained with all of this. The more I write the more I expect people to understand. The less I feel understood, the more I want to scream. “I know I am the exact same person in your mind because I look normal, but how the heck would you feel if you woke up tomorrow and had to give up your job, your independence, your financial stability, and your working body?!” What frustrates me the most is how hard it is to wrap your mind around what life must be like as a young person who is sick. It kills me that I can’t go out with friends and family on long hikes, and that I don’t have the option to turn down camping just because it’s too hot out and I don’t feel like getting sweaty. I miss running, I miss going out dancing until the wee hours of the morning, and I miss competing. I absolutely hate not being able to compete in any kind of sport anymore, which is why I have opted for being a cutthroat board game player instead. It often doesn’t feel fair that other twenty-somethings take their bodies for granted or understand just how lucky they are to go to work every day and walk around pain-free.

I will keep writing because I want so badly for you to understand. I want you to love your own body fiercely for the things it can do, and I want you to realize that just because I am not playing volleyball or tagging along on your wilderness hikes doesn’t mean I don’t want to — it just means I either physically can’t, or it’s not worth how many days I know I will pay for the fun after the fact. I remember when I graduated from college and a friend began having severe chronic pain. I felt terrible for her, but I also didn’t get that her life would be changed forever with her new fibromyalgia diagnosis. It’s easy to move on with your day and forget about how other people are feeling when you don’t understand their journey, but it becomes a whole new ballgame when you meet someone who is struggling with something that you have already been through. Next week I am going to talk some about empathy versus sympathy. I have learned how to be empathetic to others the hard way, but I also think it is one of the most beautiful characteristics I own now. You don’t always have to walk a mile in someone else’s shoes for your heart to really understand what they are going through.

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.

Irreplaceable

One of the sadder parts of having a chronic illness is when you question your own self-worth. When you’re in your twenties and chronically ill it’s really hard seeing all of the people around you traveling the world, working towards their dream job, and having fun in whatever way they see fit — whether that is going out with friends late into the night, playing sports and working out, or taking a spontaneous road trip with a big group of friends.

Some days it’s hard for me to do anything other than rest, and sometimes I have to cancel plans at the last minute because my autonomic nervous system decides that I shouldn’t be comfortable enough to do an activity. This becomes especially heartbreaking when I feel like I’ve let my loved ones down by not being able to do something that they want to. It sometimes makes me wonder why they choose me to play the special role of “best friend” or “girlfriend,” instead of someone who can be carefree and fun all the time. My chronic illness is probably my biggest insecurity.

My cardiologist must literally be an angel, as he has been so kind and comforting since the beginning of my illness. Since we have gotten to know each other, anytime he looks at my heart on an echocardiogram he looks puzzled and then says, “Krista, your heart is too beautiful for this world” with the most genuine smile on his face. It makes me tear up because I know he’s talking about something different than my physical heart — as that often beats a little too fast for its own good. He is instead referring to the core of my being. This little comment serves as a reminder that just because I sometimes feel broken or like I don’t have an as important purpose in the world as others does not mean that it’s the truth. I know other people who are sick or have struggles that make them different, and they have become even more incredible because of what they’ve been through. During times of loss, we often gain a new sense of empathy, a new appreciation for life, and a great deal of strength we never knew we had. Hardship can make us bitter, or it can be something we use to connect with others and help make them feel less alone. This is the sole reason I write so openly about my own struggles.

God puts people on this earth and lets them have hardship sometimes, not because He doesn’t love us or has forgotten about us, but instead because He wants us to glorify Him in all we do — that includes using our own heartache to lift up others. Sometimes our purpose is greater than fulfilling our own dreams.

My heart was broken. Yes, now I have an awesome boyfriend, wonderful family, and friends I know care deeply about me, but at 22 years old I had to give up my dream to live in a big city and write for Seventeen magazine and begin the fight to get my life back. Since that day three-and-a-half years ago I have chosen to push forward, even when I don’t necessarily feel like it, and never give up hope. There are a lot of things I haven’t done that I would have loved to do. I wanted to live in New York City again and I wanted to have an incredibly fast-paced, spontaneous job because that’s what I have always enjoyed so much. I love interviewing people and learning more about their stories, I love keeping up with teen trends and offering my advice to young women, and I have always wanted to make a positive impact on the world starting with our youth.

But God has a different plan for me than the one I had for myself. I can’t handle the stress or physical pressure a job in journalism has, but I can handle being vulnerable and toss aside my pride to show people that they are absolutely not alone in the world. I can handle publishing my deepest thoughts on a platform like this, even though not everyone will understand everything that I write about. Perhaps most important, though, through my struggles I have learned to love others deeply — whether or not I am their cup of tea and whether or not we have similar beliefs or values.

I still have days where I feel insecure about the way my life is with POTS, and I wonder when it will be my turn to actually live like I’m in my twenties. When I start feeling like this, though, I try to take a look at the people around me and notice how many people choose to open up to me and choose to make me an important part of their life. It isn’t because we can go out and have a wild night together or because I am able to get them into exclusive VIP parties. The people I am important to love me because of the way I love, and because of who I am as a person. There are certain “Krista traits” that are unique and special to the world. My power is that I love in a way that is irreplaceable to those who receive it. I will do anything for the people who are closest to me, and I will never turn down an opportunity to show love to those who need it, even if it means sacrificing something on my end. I strongly believe each and every person on this earth has their own qualities that are absolutely irreplaceable too.

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My favorite way to show love is through writing.

Somehow I think a lot of people will be able to relate to this post. I think we all have our own insecurities, especially in a world where it’s so easy to compare. If I have learned one thing from having a chronic illness, it’s that people love those who are genuine and themselves. We are all so different from one another, but that’s what makes the world such an amazing place. People don’t have to have a chronic illness to be able to understand some of the things I have dealt with, such as insecurity and loss. There have been so many times where someone very different than myself has reached out to me and been able to relate to something I have written in their own very different life. We are all humans with the same basic feelings and a desire to love and be loved. Just because you feel broken sometimes doesn’t mean you are not valuable to this world and loved by so many people — some of which you haven’t even met yet. Never doubt your self-worth just because you are different. The best way to make a lasting impact on the world is often because of the differences that you have to offer.


Photo Credit: Audrey Denison

A Visit From The Fire Department

Oh my gosh, I have had such a crazy day already and it’s only 1 PM!

After a relaxing morning of writing a little and going for a walk since it’s like, above 70 degrees in February, I used the gas stove top to make a light lunch. It didn’t turn off, though, and kept clicking with little spurts of gas coming out. I went to the neighbors’ house to see if they knew what to do with no avail. So I called our gas company, who sent me to a contractor, who said they weren’t allowed to work with stove tops like ours anymore and sent me to the local fire department.

I was super embarrassed to call — especially because I went on a date with someone who works there once — but a girl’s gotta do what a girl’s gotta do! The people on the other end of the non-emergency fire line were incredibly nice and said that yes, they were the correct people to call for this kind of thing.

Macy and I waited outside for about ten minutes before the fire truck pulled up to our house.

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I didn’t have any time to put makeup on before leaving the house, so pulled the classic “hide behind a hat” move.

We heard the truck’s massive engine a full minute before it actually got to our house, and it was kind of hilarious to see all the neighbors lined up along the street, unashamed of being nosy to see what was going on.

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Three people came up to the house — two men and a woman — and it was actually really cool getting to watch them in action. They shut off the gas, told me that I should never do that myself, as I’m not trained to do so with this type of equipment, and said we needed an entire new gas stove top. Noted.

The female told me that it was really good I had called, and that women should certainly know how to take care of things around the house. It was actually really neat seeing how knowledgeable everyone was, and it inspired me to learn more about how to take care of minor problems in the home. I know my POTS prevents me from doing a lot of physical activities (And thinking altogether if I have brain fog or dizziness!), but I still think it is important to know what needs to be taken care of — even if I need to ask someone else to help me actually do it.

I waved goodbye to everyone as they drove off, and took a mental note to bake them all some goodies later this weekend to say “thank you” for coming over. People like that are really wonderful, as they essentially chose a job where they serve people all day long. Now I have to go take a nap, though, since sitting outside in the hot sun took a lot out of the POTSie in me. Have a great rest of your Thursday, friends!

A Very Special Someone

I am going to end up with someone very special.

Do you want to know why I think this? Because I have a chronic illness, which makes dating me worlds more complicated than the average person.

I have been dumped because of things I can’t control — like my skewy autonomic nervous system, which often makes me feel sick or unable to do normal twentysomething activities. People don’t always sympathize with the struggles I go through every day, and I know it is incredibly difficult to see someone you love hurting.

My guy doesn’t just have to be a physical supporter for me, but he also has to serve as an emotional rock when I get frustrated with life. Some days are more painful and exhausting than others, and sometimes I just can’t think straight through the dizziness and brain fog. I need someone who will be patient with me and remember that I have a good heart.

Some days I will be cranky, but I don’t mean anything by it — I’m just not feeling well. So the last thing I need in a partner is someone who can remember how much I love him, even on the hard days. I need someone who will keep in mind that I’m still the same person, even when I’m incredibly sick and some of my best traits might be hidden behind pain. He will need to be able to remember that I still love him with all my heart, I’m just sometimes too darn tired to show it.

People like this aren’t a dime a dozen. Unconditional love is really difficult to find, and meeting someone who is willing to start a relationship with someone who already has complications isn’t always easy. The people I have met, though, who have been willing to go through the hard stuff in the beginning of our relationship are so incredibly special. These are the people who will be there for better and worse, and this is the kind of guy I eventually want to end up with. I guess in some ways I am lucky that I’m not always the easiest person to love since I have no choice but to weed out people who won’t stick around through tough times. I will end up with a 1 Corinthians 13 man.

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Today’s lesson: Take whatever it is that makes you feel different or unlovable, and realize that you are beautifully unique and you are stronger because of the struggles you have gone through. Realize that not everybody will love you with them, but the right person will absolutely love the entire package you have to offer. Just because you have a disability, baggage from your past, or struggle with something today does not mean you will never find love. It just means you need to wait for someone really, incredibly special to be a good fit for you. People like us kind of lucked out in that regard, I guess, because we can’t settle for an ordinary love. We have to be patient and wait on one that will hold the test of time and make it through the crazy curveballs life throws at us.

Keep On Keeping On

Sigh, one of the most difficult things about having a chronic illness is all the new things you develop. My illness started with POTS, but has expanded into an array of new symptoms and syndromes. The most recent thing we are looking at is whether or not I have nerve damage. I’m actually really quite nervous about this, as I thought I was in the clear since I had some skin biopsies last December that came back negative.

Now I have to go get some new tests done, though, and am praying hard that the numbness and tingling is merely a lack of circulation (or something less) and won’t cause any lasting damage. It’s always scary being presented with the idea that something new — something foreign to you — might be wrong. The best thing I’ve learned, though, is that Google and online forums are not my friend. It’s kind of similar to the way people joke about Web MD; every person’s illness presents itself so differently that it doesn’t help to look at the terrible things someone else may have. Instead, I’ve learned to focus on myself and try to remain positive while getting as many answers as I can.

In the meantime, I would so appreciate prayers from y’all that none of the new pain I have been feeling will be anything lasting. I would appreciate prayers for healing, and for finding the right doctors to help treat me. Thank you for being such an amazing support system for me! ❤

Hello, Goodbye… Um, Sorry For Being Awkward.

Oh. My. Gosh. I am literally the most awkward person in the world.

My best friend and I went out to dinner this past weekend and since I somehow hit the jackpot and landed a bestie who happens to be a makeup artist and insanely gifted at doing hair, she got us all dolled up for a night out in DC — which actually just involves dinner and lots of dessert. It had been a long week, so I was excited about having a fun girl’s night.

Everything started out great. We parked in my favorite garage with a really crazy attendant who sings and dances aggressively toward your car, then tries to make conversation until you finally drive into a parking space. He’s my favorite because he’s incredibly goofy and never fails to make me smile. And the parking happens to only be $4, so you really can’t beat it!

Anyway, we got to our destination and Audrey held the door open as I walked into the dark, swanky restaurant… And I immediately saw someone I had met on Tinder close to a year ago!  He was standing across the room, and my immediate reaction was to stand like a deer caught in the headlights.

After I stared him down for a good 15 seconds, he looked up. I don’t think he recognized me right away, so he kind of cocked his head as if he was thinking, “hey crazy, do I know you?”

“OH, HEY!” I yelled from across the room.

Literally right after I screamed my greeting, my mind started working and I decided it would be less awkward if we just didn’t say anything to each other since we hadn’t talked in such a long time and since he probably wouldn’t even recognize me. This was when things got really uncomfortable. For whatever reason I felt like he wouldn’t have known the “Hey” was for him, and that I could just go about my own business without acknowledging my awkward salutation. I stared a hole into the ground until I felt both his and Audrey’s inquisitive eyes on me wondering what my spastic behavior was all about.

WHAT THE HELL, POTS?! Krista. You already said “hello.” Why do you think you can just take that back and play the “We don’t know each other” card now? THINK A LITTLE, GIRL! 

“Krista?” he asked cautiously, as if I might go completely insane if he was mistaken. After all, he had never seen a human behave quite like this before. It was fascinating — the kind of interpersonal interaction that should be studied. He didn’t know what a girl like this could be capable of, as she was clearly exhibiting psychotic behavior.

“Oh, heyyyyy,” I blushed. Darn it, Krista! I thought to myself. You aren’t wearing an invisibility cloak; he can clearly see that you were the one who shouted hello! “I didn’t recognize you…” I trailed off. There was no coming back from this.

We chatted for a second or two and Audrey finally stepped in and introduced herself, glancing over to make sure I had regained at least part of my sanity as she gracefully ended the conversation. In hindsight I have no idea why I behaved so strangely. There wasn’t any bad blood with this kid; I guess it had just been awhile since I saw anyone from my online dating days and it just caught me off guard. Ever since I got POTS I haven’t been the best at thinking on my feet, and I kind of wear my feelings on my sleeve without meaning to. Luckily the rest of the night went pretty smoothly, and the parking garage attendant ended up making me feel better when we left because he is just so happy to be his goofy self. If he can be silly and not care about what others think about him, I should be able to, too!

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Today’s lesson: Just don’t pull a Krista like this. Ever. I am not someone who typically ignores people when I recognize them, and now I know why — I am clearly not good at it.

My Shade Of Blue

I have a disability.

Growing up I never would have thought I would hear those words come from my lips. I was always an exceptionally healthy individual; I exercised very regularly, ate well, and excelled academically.

Even in the very worst points of my illness I wasn’t able to comprehend that this word is attached to me now. I don’t have a normal life anymore, and I do need a lot of help with tasks that most people my age wouldn’t even think twice about because they are so mundane. I have to tell myself this over and over again to understand that asking a friend to carry a “heavy” water bottle will not make their arms hurt for days after or that having someone drive 30 minutes to see me isn’t going to bring them any sort of physical pain like driving more than 15 minutes down the road does for me. This is a difficult concept to grasp after living the way I have been for three years now.

When I first got POTS it came with an electric blue handicapped parking pass. This was to accompany me everywhere. I took it to my doctor appointments and to the gym — the only two places I could muster up enough energy to go to when I first fell ill. I was determined to get better, and although I wasn’t able to go out with friends, I would force myself to go on these necessary trips with the hope of having a normal life again one day.

My mother lovingly called my handicapped pass my “VIP pass,” but my brain couldn’t comprehend that this was something that was okay for me to use. I was so used to being able to do everything by myself and having an independent lifestyle that when my working body was torn away from me I didn’t know how to react. I felt guilty using the pass, but when I didn’t I would often feel too dizzy to walk to the back of the parking lot and someone would have to come pick me up. I had moments when I had to lie down in the middle of the parking lot so I wouldn’t pass out on the hard concrete and get sent to the hospital again because of a cracked head or something. I remember my heart freaking out on me so many times while I was merely trying to decide on something like whether I wanted to try vanilla or plain almond milk. I would lie down in the middle of the grocery aisle and put my feet on a low shelf to get the blood flowing back to my brain (Hence, the “postural” part of POTS). The girl who was literally passing out from just standing up felt like she couldn’t label herself as disabled.

A lot of this had to do with my chronic optimism and hopefulness that I would one day be better. The other half, though, had to do with the way I thought about disability. The handicapped pass says it all with the picture of a wheelchair as the symbol for the disabled. I do not look like someone who has a physical disability. I look like an average run of the mill girl you’d see on a college campus or studying at Starbucks. If anything I actually look like an athlete, as I am tall, thin, and wear my sneakers almost everywhere I go (They’re a lot easier on my knees than any of the cute boots or heels I loved wearing just a few years ago). I do not look sick. You absolutely cannot see my pain; even doctors have to feel different parts of my body or rely on complicated tests to see that I’m not just an average twentysomething.

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I’m always surprised when people tell me they’re “glad I’m feeling better” when they see pictures from photoshoots or nights out with my friends. A picture might be worth a thousand words, but without the context behind the photo it’s impossible to get an accurate story. The story behind this photo that my friend Audrey took would be about how blessed I felt to have a “good day.” It would include that I had a hard time turning my neck for some of the photos, and trying to overlook the sharp pain in my arms and shoulders so that I could have a fun day with my best friend. Despite some pain and difficulties, this is an overall happy photo for me to look back at.

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This photo tells a different story. It was taken two years ago by my cousin Kristin. A bunch of my relatives were visiting for Thanksgiving and since Kristin is a photographer, we decided to take a few family photos outside. I was freezing and wore a giant puffy coat until we got to the bridge across the street from my house. My head was spinning, so after a few shots I shivered all the way home where I promptly went to my room to take a nap in hopes of sleeping off some of my POTS symptoms. I didn’t get to help make the dessert — one of my favorite Thanksgiving activities — and I missed out on a lot of quality family time because I wasn’t feeling well enough to sit around and visit with everyone. I stayed in my room much of the visit, sleeping or watching Netflix, as there wasn’t a comfortable place for me to sit in the living room with my family. Even sitting up can be exhausting with POTS, as the blood rushes away from my brain and makes me dizzy.

I still don’t think of myself as being very different than anyone else. I have been sick for so long now part of me feels like my life has always been like this. I don’t really remember what it’s like being able to go to a store by myself without planning where I can get water with electrolytes, as I cannot carry my own water bottle for more than a few minutes at a time. Sometimes I feel like the rest of my life was a beautiful dream; I remember so many of the good parts of not being sick that I almost glorify regular life now. I think back to being able to go clubbing with friends and feeling carefree rushing around the streets of New York City. I remember how amazing running felt and miss the burning in my lungs from training out in the cold, crisp fall weather.

I remember how life was before I got sick and sometimes wish I could go back and fully enjoy the time I had. I wasted so much time worrying about the future and my plans that I didn’t even realize that whether or not I like it, I might not be in control of my own life — at least to an extent. I can’t work, and I act like going to doctor appointments as often as a full time job is a normal thing. All of my college dreams were shattered the day I got sick. I still do dream of being better one day and being able to write for a living. I want to be independent again one day, and I would love to be able to train for even just a 5K.

You can’t see my disability, but it’s there every minute of every day. Having POTS has been a great lesson to me that just because someone looks healthy or looks happy doesn’t mean that they are. Looks can be deceiving. You never really know a person until you hear their story.

A Day In The Life Of Pain

6:15 PM
Shit, I mumble as my leg gives out from the shooting pain striking through my body like a lightening bolt.

I rarely curse unless it’s when I write about something that upsets me or when I’m in terrible pain. “Rarely” changed to “several times a week” when my chronic widespread pain came about.

6:20
I make my way over to the couch, carrying my premade dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house.

6:24
It’s hard to eat when you’re nauseous, but severe pain rarely comes without a guest. The headaches are the one I dread the most, but neither symptom is a fun one to deal with. I think about my physical therapy and how it’s three days away. I don’t feel like I can make it that long without having needles stuck in my arms and wiggled around in the giant, painful triggerpoint knots until it hurts so much I want to scream, but the aftermath of dry needling is worth the pain I go through of getting it done. My arms stay painfully sore for 24 hours after, but my chronic pain levels do drop significantly for several days when I do get needled.

6:27
I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use?

6:45
I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again.

7:00
I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere.
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7:03
I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. POTS can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much!
The water cools down quickly and I lean back onto the towel-pillow I made at the edge of the bath. Gossip Girl is playing softly in the background, but I quickly find that I can’t get comfortable enough to watch the screen in the tub. I turn off the iPad and on The Kane Show Podcast I had been listening to for the past several years.
I close my eyes and lean back. Pain shoots from the base of my neck to my head, and I twist and turn until I find a spot that doesn’t hurt as much. At least this will be good for my arms, I think to myself as I float them back and forth in the warm water.

7:16
Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think.

7:50
My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain.
Now I am very careful to prevent any kind of pain I possibly can. I feel pretty high maintenance when I go out with friends, but they at least understand and can forgive me for it; pain, on the other hand, can not.

8:03
I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait.

8:05
I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my twentysomething friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are normal. I know that better than most.

8:06
My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television.

8:08
I realize nothing has helped as much as I had hoped. I heat up my herbal neck pillow and rest it on my neck.
Different nights call for different activities, but on really bad evenings I can’t really think and will tune in to an audiobook, catch up on whatever reality TV show I’m into, or visit with friends. Almost everything hurts — I can’t read or write, as both of those involve some sort of use of my arms — but I always try to stay optimistic and realize that one day I will have a day where I feel good again… Just not today.

I searched the document and the word “pain” was listed 21 times in the 2 hour time period I documented. Instead of editing it to make it more readable, I left the number because I felt it touches the surface on how hard it is to deal with so much pain, day in, and day out.

22.

#Blessed

This weekend was one where I really felt like the luckiest girl in the world, and all of the people who made me feel this way probably don’t even know that they had such an impact on me.

Not only were friends amazing, but I had several encounters with strangers that made my heart feel happy. I don’t even think I could write a post thankful enough for everyone (my arms won’t hold up too long today, so I have to make this as brief as possible!), but I’m going to do my best.

First, everyone seemed so in tune with all of the pain I’ve been experiencing lately. I never in a million years thought people rushing to doors ahead of me to hold them open could mean so much, but this weekend proved me wrong. Everyone is also always so kind about making sure I have a comfortable seat to sit in, as POTS makes me kind of a grandma and will make the chronic pain a lot worse if I don’t have an ergonomically correct chair to sit in.

I went to a game night with a small group of friends on Saturday and had such a busy day before that I didn’t know what was going on for dinner. We got there and were informed that everything was gluten-free so instead of picking out the ingredients I could eat anything that was there. Not only did they remember my gluten-free diet, but they didn’t put tomatoes in any of the Mexican dishes because they remembered I couldn’t have those either. Sometimes I even forget that I can’t eat tomatoes anymore, so it really meant so much that they remembered after I had briefly mentioned it once. They even made gluten-free brownies for the group and everyone had to choke down the food that I now love and look forward to (Seriously, gluten-free brownies are my favorite food!).

I had planned to take an Uber home from a lunch my dad had dropped me off at, but one of my best friends and her fiancee picked me up and took me to get a milkshake on the way home instead. When I told them they shouldn’t make the trip back to my house and that I was set with an Uber ride, they were adamant that friends don’t let friends take Uber. This situation is the exact same I have with one of my good friends who goes out of his way to take me to game nights. Uber really is missing out on a lot of business with me — my friends and family are all just too great!

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My weekend ended with going to dinner, dessert, and a makeup shopping spree with my best friend, and when I got home I found a note from her in my purse that made me cry. She reminded me of the story of Job in the Bible, and how God allowed Satan to tempt him, which ended up making Job stronger and more refined than he was before his trials. Things have taken a turn for the worse lately, but I know without a doubt that God is here with me and loves me. He has a better plan for me than I could have ever come up with myself, and I am slowly learning to trust Him.


I genuinely think I am the most blessed person in the world. I have more love in my life than anyone I know, and I thank God every day for placing so many amazing people in my path. Sometimes I feel like I don’t know what I did to deserve getting sick and having so much pain in my life, but when I really look at everything I realize I also don’t know how in the world I ended up with so much love. I really am blessed.