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.