It Is Saturday

It’s hard to keep track of the days when every one is the same.

This is such a strange time in our lives. It’s kind of crazy to think that no matter what country people live in, we can relate to the fear and uncertainty of the exact same thing.

As I mentioned in my last post, I’ve felt a surprising amount of calmness throughout all of this. I am being incredibly careful and not going out or anything, but I also am not living in constant fear or anxiety. I think a big part of this comes from my time at home with POTS. I now have the experience to know that even with incredibly drastic changes that are completely out of your control, you can still have joy in your life, and perhaps just as important, things can and will get better. Staying at home when I have the physical capability to go out is new, but I know what it’s like to lose your functioning body and be stuck on a couch and still feel happy and make really great memories from it. Surely we can still have joy in days at home with loved ones still — or if you are quarantined by yourself, with people from afar. Thank God for technology.

A lot of this Coronavirus quarantine feels kind of like getting sick suddenly with a chronic illness. This time, though, we can all relate in one way or another. We are lucky to have each other, and all the help and support I’ve seen online has been heartwarming to say the very least. I love that people are staying inside despite being so incredibly bored, and that we’re looking to support small businesses in this time (As a side note, please message me any and all businesses that need some support — at the very least I’d love to follow on social, but if it’s a product I’d use I want to start buying from people directly, if possible!).

Something that I’ve learned with anxiety and having a chronic illness is that periods of time seem to have lots of different chapters that make up your life, but none of them last forever. This is really good for the tough chapters, and sometimes sad when the amazing ones come to an end. Nothing in life lasts forever, though, and I think we need to remember this as we keep moving forward the next few weeks and months. I know that days will sometimes drag on and uncertainty can be daunting, but one day this will all be a distant memory and we’ll remember the happier things more than the things that were hard. We’ll remember playing Nintendo Switch with our families, eating at home every night in front of the television, relating to a million of the memes that are online, and having walks around the neighborhood be our daily outings. We’ll all probably also have difficult stories to remind us of harder times too, but hopefully something good will come out of those, too.

I guess the only point I have in writing this is that if you’re having a hard time with everything right now, keep pushing through. This is a temporary time in the grand scheme of things, and I know we’re going to come out of it with new empathy and understanding for others. Also, don’t be afraid to ask for help if you need it. We are all trying to learn how to fight this in whatever ways we can, and want to be able to lean on each other. Many of us are looking for ways to help, but may just not know how.

Have a great Saturday! I’m incredibly sleepy and a bit loopy from lack of exercise. I didn’t particularly feel like writing at all today, but am trying to as often as I can. Going to find some sort of yoga class to take online in the basement now!

Strange Things I Miss

Today happens to be a very POTSie day. Luckily, dizzy spells are much fewer and further between, but I hate when they decide to come around with a vengeance. I have been doing a new exercise protocol lately that is supposed to make me feel worse before I feel better, but I am optimistic about how much it could help me in the long run.*

Anyway, I am currently working on a post about what my POTS timeline has looked like, and the improvements I’ve made, as well as the things that are still different in my life post getting sick. It’s been so interesting for me to look back at different things I wrote throughout the years, but is great to have something tangible to look at regarding my life.

Certain things are becoming more normal, and I am pulling off looking like a normal human being like a pro. I have looked pretty normal since getting sick with POTS, since it’s an invisible illness, but I used to have to ask for help much more often. Now I think people around me often forget completely that anything is wrong with me! I hope one day this will be true. Despite being sick for over five years now, I will never stop hoping to get back to complete normalcy. I have a million different things I’m working on for the blog, so today I wanted to just touch on a few things that have been different for me the past half-decade.

1. I can’t enjoy taking showers. Sometimes I hop in a hot shower just because I am in pain and want something to release the tension in my muscles, but for the most part they’re just exhausting. I usually choose between washing my hair or shaving if I’m going to stand the whole time, and have to alternate between the two or rest quite a bit longer after I’m done. Does anyone actually find showers enjoyable? I can’t remember anymore; now they’re just exhausting.

2. I’m not very extroverted anymore. Before I got POTS, I was super extroverted. I was always around people and had an enormous circle of friends. Mentally, I still want to be doing a million things, but my body isn’t up to that. I feel tired and drained from doing too much, so I don’t go out nearly as much as I used to. When I do, it’s usually dinner or dessert with just one or a few friends, rather than hanging out in a giant group. When I first got sick I really couldn’t do anything other than try to stay optimistic, rest, and work as hard as possible to take care of my body so I could hopefully get better one day. I think some of my friends who weren’t around might have felt like I was neglecting our friendship, but in reality I just couldn’t function. I have lost touch with people I sometimes still miss. Getting sick really does show you who is going to be around for the long haul, and makes you see who has unconditional love for your friendship.

3. I miss writing for hours on end. My favorite thing in the world has always been writing, even back in elementary school or high school when writing wasn’t supposed to be fun. I always said English was my favorite subject, even when other kids would say “lunch,” “recess,” or “gym.” I loved learning more about our language and how to write things that people would enjoy reading. It’s difficult for me to sit at a computer and type for hours without feeling it after, and then being in a lot of pain for days after. I am very slowly working on endurance, and hope to be writing more and more.

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4. I miss being a helper. Before I got POTS I was independent and strong. I loved helping other people in any way I could, and was always there to do acts of service. There is nothing I hate more than having to swallow my pride and ask others for help. I’ve had to do that a lot the past few years, and it honestly doesn’t get much easier. I hate inconveniencing others, and I have a really hard time telling people I need something. I am still working on communicating better, but in the meantime I use my writing as an outlet.

5. I wish I could have my old dreams back. I dreamt of living in New York City as a magazine editor, and thought about how many lives I would change through my writing. I wanted to be able to support myself, pay my parents back for school, and afford my own life. I wanted to keep pushing myself and training for another half marathon, and I wanted to collect a million new skills from the new people I’d meet.

I have set new and more realistic goals, and am focusing on getting my body in shape so I can reach higher. Despite my life being much more complicated now, it’s also somehow become more simple. I realize how much I value the people who are in my life, and how important they are compared to everything else in the world. I’ve learned to appreciate the many blessings I do have, and how to live in the moment better. I still feel like I’m looking to find my purpose in the world, but I also trust God now more than ever to have better plans for me than I ever did for myself. I’m just trying to figure out what that is now.


*For any POTSies who are curious, I am doing the Levine protocol.

Marks In Time

A lot can change in a year.

Time is a funny thing because as intangible as it is, it sometimes feels very concrete. There are certain things that make time more significant. You know both college and high school are going to last 4 years, your birthday will be around again exactly 365 days from the last one, and the Christmas season is every 48 weeks or so. Having a chronic illness makes time a little fuzzy sometimes, though. I have had POTS since August of 2013 and can pinpoint different phases throughout my journey, but it feels weird that I’m coming up on five years now. I have been fighting for my health longer than the time I spent in college, which is super weird. When I think about going to Mason I have such different memories from each year I was there. When I was a freshman I was timid and shy. I didn’t feel like I had a place I belonged, and I left campus to stay with my family just about every other weekend. I liked my classes and had a couple of really close friends I would keep for the rest of my life, but I was still figuring everything out.

My sophomore year was a blast. I made so many new friends, and I had a group of people who felt like home. I made friends with the girls I would call my roommates the next year, and I was an editor for the school newspaper. I didn’t find as much confidence with writing until later in college, but I looked forward to every day I would spend in the Broadside office with all of the other aspiring writers. Sophomore year was spent finding myself, and learning what I wanted to do the rest of my time in college.

Junior year was probably my favorite. I loved feeling secure with some of the best friends I could ever dream of, and had a great balance of work and play. I turned 21 that year and will never forget that birthday. I waited to drink until I turned 21, so all of my friends crammed into our little apartment living room to celebrate with me. People brought six packs of different things to drink, but I stuck with a cherry Smirnoff Ice. I was surprised it didn’t taste very alcoholic, and took my time sipping on my new favorite drink. That year we spent long nights dancing at the bar down the street every Thursday, and still had the energy to go out and explore restaurants and museums on Friday and Saturday.

Senior year before moving to New York is a blur, but my last semester of college spent in the city was one of the best memories from those four years. I had my fair share of adventures, long hours working overtime in the office, and despite blocking it out most of the time, I had my share of lonely nights in that little shoebox apartment on the eighth floor. New York was definitely an enormous highlight of my college career, and I’m still so thankful for each and every memory I gathered from that time.

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My mom took this picture of me my first month being a New Yorker. I felt so at home rushing around the city in my little dresses and tights, and fit in with all the editors at Seventeen by living on coffee, books, and cupcakes.

Do you see how easy it was for me to create four years of my life?

It hasn’t really been like that again until recently. The first few years of getting sick really blur together. I have a little bit of a timeline I can create, but it isn’t the same concrete, certain one I have from every other year of my life.

I got sick and went to a million different doctors. I had my heart hooked up to echocardiograms, holter monitors, and got tested for diseases I had never heard of. I watched The Food Network, then I watched The Office, then even later I started a new series called Pretty Little Liars. I went to the local shopping center with friends and found myself lying on the lobby floor of the movie theater to keep from fainting. I went home and cried, and wondered why I was the person God allowed to get sick. I remember nights of lying on the couch and having conversations with friends about the outside world I no longer felt a part of, and wondering aloud if I would ever be able to have a normal twenty-something life again. I remember getting my first job while I was home sick, then having chronic, debilitating pain from using my arms too much. I was diagnosed with Ehlers Danlos Syndrome, and had to stop doing the one thing that made me feel kind of normal and independent.

I remember moments, but I have no idea when they happened.

I also don’t know when I started getting better, as it’s been super-slow, but there are a few things that offer great markers of healing. One year ago my mom hosted a Bunco party at our home. She always takes the month of February, and I often get invited to come play with her group when it’s held at our house. Bunco is essentially a game of rolling dice and giving an opportunity to catch up with friends. Last year I remember finishing the game and going upstairs and feeling heartbroken at all the pain I was in — just from rolling dice for an hour. My pectoral muscles were sore and ropey, and my shoulders and arms burned with sharp, constant pain. I regretted taxing myself so much for a game, but I also wondered how something so simple could cause so much of an issue. It wasn’t normal, and I hated having to choose between living my life and feeling good. 

She hosted this same party again last night and I got to attend. I am sore and by the end of the night I was glad to be done with the rolling motions, but today isn’t an 8 or 9 on the pain scale like it was last year. My physical therapy sessions are so beneficial for my health, but I will be able to make it until my Friday appointment without trying to hold it together while I’m reeling in pain. I’m more sore than I am on an average day, but I don’t feel like I’m going to have a complete breakdown from being in pain. I can easily handle a little bit of soreness and as long as I take it a little easier today I will make up for everything with my stretching and workouts. This is proof that despite relying heavily on physical therapy and rest, I am making progress.

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Today’s lesson: Even if you feel frustrated because something isn’t changing, taking a look at the really big picture and having little mile markers is so helpful for keeping spirits high. I still may have a long way to go in being normal again (And maybe I’ll never quite get there), but any kind of baby steps I can take is still progress. I’ve already learned so much through my journey, and I trust God to be with me every step of the way. Staying positive and remembering blessings throughout every step helps me have a thankful heart. My path has helped me become more empathetic, kind, and understanding, and it has led me to my new forever family member, which is absolutely priceless.

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.

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.

Chronically POTSitive

I am a minimizer.

If you look this up in the dictionary you won’t find a definition, but a minimizer is someone who diminishes their feelings in order to make others comfortable or happy.

Something I minimize just about every single day is how I am feeling. In PT I sometimes feel dizzy, but I don’t say anything unless I am worried that I’m close to fainting. I don’t like to complain or for people to be worried about me — even if it’s a totally normal thing for them. When people ask how I am doing, I always reply with, “I’m doing well, thanks! How are you?” even when it’s not true. I’m often stiff and in pain, but I rarely call attention to my it even in my closest relationships because I don’t want to feel like a broken record. It’s annoying enough having the pain every day, but not dealing with it and having to hear about it all the time would really be a nuisance.

When I say I’m in pain I feel like most people can’t understand what that means because although they may have been in pain for a short time, they haven’t had to deal with chronic pain. Chronic pain is such a draining cycle and isn’t like just breaking a bone or stubbing your toe. An injury typically has an end date to the pain. Even if it hurts intensely at the time, you know your life is going to go back to normal at some point. Chronic pain doesn’t typically look bad either, since people can’t see the way my body is malfunctioning. With a broken bone you can sometimes see the disturbing crack in the body and imagine how terrible the person must feel, but with an illness there usually isn’t much the average person can see that indicates anything is wrong with you.

Chronic pain doesn’t have the hope of getting significantly better in any certain time period. When you’ve spent years spent hurting — ranging anywhere from mild to intense — it’s disheartening. You are trapped in a viscous cycle that starts with pain which moves to the inability to get a good night’s sleep that makes healing tough, and the inability to do normal activities or do little things for yourself. I get on and off frustrated with some of the independence I’ve lost, and some days are harder than others. I’m trapped in a 6 mile radius near my home unless I can get a ride further out, but I miss being able to explore the world on my own.

I don’t always ask for help when I need it because I want to be independent and I want everyone I love to be able to enjoy their day without focusing on me. I hate being the center of attention, so I try to wait until something hurts or I am moderately concerned about my well-being to say anything.

Writing is the only place I feel like I can be completely honest, because it’s an easy outlet. My brain knows exactly what to tell my hands, and it goes on autopilot until the page is filled with words that I feel. Overall I’m actually really happy with my life. I’m blessed to be an optimist, and I won’t ever lose hope that one day I’ll be better. I can find the best in most situations, and I’ve already been able to see some about how my own pain can be used for good to help others. I have an incredible family, the best boyfriend I could choose for myself, sweet friends who are more than willing to be accommodating to my new high maintenance life (Even after 4 years it still feels new), and more adorable puppies and dogs than I know what to do with. What I lack in health is easily made up with in the abundance of love I have in my life.

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Hair, makeup, and (impromptu) photo credit: Audrey Denison

Feature Friday: Play Now, Pay Later

Here is something written by my lovely mother about getting diagnosed with skin cancer. I wanted to share her post because I think it’s really important for people to know more about the dangers of the sun. I hear so many of my friends say they are going to the pool to “tan,” and I understand wanting to have nice color, but it can come at a very high price. I’ll do another post soon about a few of my favorite products (self tanner, bronzer, vitamin D tablets, clothing items, and a few other things) that keep you healthy and make you feel like you have a nice, summery glow. Without further ado, though, here is my mom’s message about skin cancer.


One of the biggest fears most people have when getting a diagnosis from the doctor is hearing the “C” word, and in March that’s exactly what my dermatologist told me I had.

As a child I spent most of my summer days in our backyard pool or at the beach.  My mother always insisted I wear a t-shirt over my swimsuit since I was fair-skinned, and thankfully she always kept me in a sun hat.  As I got older I admired my sister and friends who could get a deep, golden tan, which is when I started using concoctions like baby oil mixed with iodine to attract as much sun as possible.  My best friend and I would sit out in the midday sun when the rays were their brightest in hopes of looking like the model on the Coppertone ad.

As a young adult, I discovered that nearly anyone could get a “healthy” looking tan by going to the tanning booths that were popular in the early 80’s.  It seemed like they were everywhere, and everyone was doing it.  Looking back I am so happy that I only purchased one package, as I hated the strange smell and the claustrophobic feeling they gave.  The beach was still my favorite place, so whenever I had an opportunity to travel I chose somewhere with lots of sun and sand.

I have always been interested in health and wellness, which is why I decided to become an esthetician many years ago.  By then I knew that any kind of tan is considered sun damage. I did whatever I could to avoid having sun on my face and always used a good amount of sunscreen.  My kids who were avid swimmers never left the house without being slathered with sunscreen and an SPF shirt.  I lovingly nagged all of my clients about the danger of too much sun exposure and my “platform” was reinforced when a sweet young man treated his mom to a relaxing facial with me. He had driven her straight from the hospital.  To my horror, when she removed her hat she had a giant scar from one side of her scalp to the other and had received the diagnosis of terminal melanoma.  Her sweet son was treating her to something he hoped would make her feel better.  That poor lady and her son will be forever ingrained in my mind, so you can see why this has always been one of my most important platforms when educating my clients.

This leads me to my doctor’s appointment this past March. I have always been diligent at getting my annual skin cancer screenings.  It’s never fun sitting in the paper gown knowing that someone will be scanning every part of you from head to toe, but the alternative of not being checked could always be worse than the embarrassment, so I bit the bullet and went into the office.  “No changes, you look fine,” the doctor said. I showed him a very tiny dry patch of skin just below my throat that I had been concerned about.  “Oh that’s nothing,” he assured me, so I left feeling confident and proud of myself for being able to cross the annual appointment off my “to-do” list.  A couple months later I accompanied my daughter to the same dermatologist for one of her appointments.  Before the doctor left the room I asked him if he would mind taking a look at that tiny patch of dry skin again that he had dismissed as normal before, and told him I had tried exfoliating it but that it kept coming back.  Again, he took a look with his doppler glasses and said casually, “Nothing!”  I felt relief, because in the back of my mind I kept thinking of that poor lady and her sweet son who had visited my esthetics office some years back.

About three months passed and I went to my family doctor for my annual checkup.  During the exam, I showed her the tiny patch below my throat and she said she wanted me to see the dermatologist she refers to, so I went to see him that Thursday.  I showed him the dry patch and he biopsied it right then and there in the office.  He told me if it was positive, someone would call me within 3 business days.  Tuesday rolled around and no call.  Great, I thought!  I’m in the clear.  Another week passed, then another. Several weeks later the phone rang.  “I’m calling to tell you that your biopsy was positive for cancer,” I heard on the other end of my phone.  Wait, didn’t they say they would call within three days?  Now my mind was racing back to months before when I had first asked my dermatologist about the cancer I now realized had taken residence in my body!  When I asked the bearer of my news why she didn’t call me sooner she simply said, “Ma’am, we have a stack of calls to make every day.”  I asked her what my next step was and she said the doctor would do the surgery to remove an inch around the area.  My first concern was getting these rogue cells the heck out of my body, but realizing this scar was going to be significant and unable to hide above any neckline outside of a turtleneck I said I would get back to her to make the appointment — I wanted to check with a skin surgeon I knew of who was also a plastic surgeon. Then she informed me that by law I needed to let her know within a few weeks that this procedure had been completed.  Why then did it take the dermatologists’ staff three weeks to let me know I had cancer in the first place?!

Due to the busy demands of the doctor, yet another three weeks passed before I was able to reluctantly go in for the surgery.  The surgeon performed what they call MOHS surgery, which is a procedure in which they take as little tissue as possible and test it for cancer cells right away.  They continue to take more if necessary until it is all gone.  I was so thankful that it only took one “pass” until I was told they had gotten it all.  They stitched me up, put dressing on the wound, and told me they expected to see me again as most people who have these types of carcinoma become “repeat customers.”  That was the last thing I wanted to hear.

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Shortly after the procedure I was talking with my friend and described my cancer patch to her.  She grew quiet and said she had the same kind of thing just above her eyebrow.  “I’m sure you are just overly-concerned because of what I just went through,” I reassured her, but knew there was always a chance, so suggested to get it checked — just in case.  She phoned me a couple of weeks later to let me know that her doctor had found bad cells!

My platform for maintaining healthy skin now feels even more important and I am asking you to thoroughly check yourself. Get on the phone and make that yearly dermatological appointment to get yourself checked head to toe.  A good exam includes the doctor checking your scalp, behind your ears, between your toes and even inside your mouth.  If you have a strange feeling about a mole or a freckle or a dry patch of skin that just won’t go away, get to the doctor as soon as possible.  If you feel that someone might not be right about your diagnoses, it never hurts to get a second opinion.  Early detection is your best friend.

My scar is healing well.  A couple of weeks ago I knew that my incision was healed enough to use my needling roller to smooth out the scar.  I honestly can’t believe how much that has helped!  I’m guessing there will always be a small scar but I will wear it proudly as a reminder for myself and others to take precautions when outdoors, and to always get your annual dermatological skin screening.

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After using the roller for a few weeks.

How Skin Cancer Has Affected Me

My mom was diagnosed with skin cancer in March, and she has a really powerful story I want to share with you. Today I am going to be sharing a little piece of how I’ve felt about my mom’s journey, and tomorrow I will be posting the more important story that my mom wrote about her journey with skin cancer and her health.


Ever since I was a little kid my mom has emphasized the importance of wearing sunscreen. I remember going to the neighborhood pool flaunting my long, chubby toddler legs, a polka dot bikini, and a hat that covered all the way to the bottom of my neck. We would make tents out of chairs and towels to create forts of shade, and sat under them and applied sunscreen at every break.

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My brother and I taking a break from the sun.

My mom has always taken better care of me and my family than she has herself. She consistently puts us first and wants a better life for my brother and I than she ever had for herself. I grew up hearing about how she used to go to tanning beds and put on baby oil instead of sunscreen when she went to the beach in an attempt to get a deeper color. This was a funny thing to think about because the entire time I’ve been alive my mom has been one of the most careful people in the sun that I know. She puts sunscreen on every single day and invests in enormous wide-brimmed hats and expensive SPF umbrellas to stay out of the sun. We always took family beach trips to Bethany Beach in the summer, and dad was typically the one who would play in the water and beach volleyball in the sun with my brother and I. My mom would make appearances for a half hour at a time, but you could typically find her reading a book in the shade.

As a child my mom called me her little “brown bear” because despite putting 60 SPF sunscreen on the hour at every break I spent a lot of time at the pool for swim team and playing with friends. I would take little breaks to go in the shade, and was diligent about being careful in the sun and wearing pink zinc on my face.

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No, that’s not a burn on my face… It’s my pink sunscreen! (And yes, I was tatted on occasion as a child #90skid)

Even when I was high school and being called “pale” was one of the biggest insults you could bear, I told my friends they needed to be careful in the sun whenever they’d mention going to the pool to get a tan. Even though sunburns might be the worst kind of sun exposure, any change in your coloring is sun damage, which can lead to negative lasting effects.

Although I did get a little too much sun from being on the swim team in my childhood years, thanks to my mother I have never in my life had a bad sunburn. Did you know if you have 5 blistering sunburns between the ages of 15 and 20 your risk of getting melanoma is 80% greater than it would have been? Your risk of getting another kind of skin cancer is increased by 68%.

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Me at like, 16 years old. No shame in my freckle game! I could have probably tried to make my expression look a little less derpy, though. 😛

This March when my mom came back from the doctor and told me she had skin cancer I was scared. It wasn’t melanoma — thank God — but the “C” word is just terrible in general. I know I complain about myself being sick sometimes, but I don’t want my mom to have anything wrong with her. She is literally an angel on this earth and the best person I’ve ever known. I know some of you might think I just say this because I’m her daughter, but it’s true.

This is the perfect example of how not being careful in your twenties can really catch up to you. It’s why we need to wear sunscreen, be careful about what kind of things we put into our bodies, and try to have a healthy and balanced lifestyle.

I am sharing more of her story tomorrow because I want to remind everyone the very real effects sun damage can have on your body in the future. When we’re in our twenties we often feel invincible like nothing can touch us, but sadly that’s just not true. When you go out this summer, please just make sure to be careful. Tan skin fades so quickly, but skin cancer can have a very real, lasting effect. If you want to be tan for an event, use self tanner. Think about all the beautiful people like Emma Stone and Anne Hathaway who totally rock red lips and pale skin. Ultimately, no matter what you look like it’s not the color or shade of your skin that makes you beautiful — it’s the inside that really matters.

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At the beach a few summers ago.

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