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.

Rose, Bud, & Thorn

Have you ever been in enough pain to make you feel sick?

It’s one of the most annoying things that happens with POTS. Last night I passed out on my way to the bathroom in the middle of the night. I think it’s because I’ve been having some muscle spasm issues in my back lately. EDS makes it really easy to get injured. Partly because of my hypermobile joints; the other part is due to the fact that my body overreacts when it feels a threat — such as a torn muscle.

I’ve been a bit cranky this week because of that and a migraine. I tend to try to suck it up and not complain too much, but that sometimes makes me a little bit grumpy, so I think I need to be a little more vocal about venting and then trying to ignore my symptoms as best as I can.

I’m not feeling much better, but tonight is going to be a turning point so I can have a nice weekend. From tonight until Monday I am going to try my best to focus on the present, not how long I’ve been hurting or wondering when I’ll feel better.

Tonight while I put some heat on my spine, I decided to play a game with y’all that my roommate and I loved in college. It’s called rose, bud, and thorn. It’s a game we played every single night and would giggle about as we recounted the details of the day to one another. The rose of the day is the best part of the day. The bud is something you’re looking forward to most, and the thorn is a not so great moment. Feel free to sound off yours in the comments; I would love if other people played along with me!

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I had 2 roses today. The first was when my mom and I took Macy on a walk. She looked so darn happy, and I love watching Macy chase little butterflies when we go out into a field! My second rose was when Robert called me on the phone after work and we had a kind of silly conversation. It made me smile, and I do think lighthearted fun is the best medicine.

My bud is this weekend. Robert and I are having another date night, which should be fun, and I am excited to just kind of relax and have a chill weekend after that. I also got a surprise for him, and hope we can use it this weekend! I will post what it is at a later date, but it’s something kind of nerdy and fun.

My thorn is just not feeling well. I am optimistic that tomorrow is going to be a great day, though, and I’m really going to try to enjoy the little things!

I’m feeling really sleepy now and am hoping I’ll be able to get some rest now. Goodnight world, I will post another little blurb tomorrow. I’m trying to be better about writing because I know people keep coming back to my site, and you deserve to have something new to read. Thank you for being kind and patient with me! ❤

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.

You Are Meant To Be Here

You know what’s such a mindblowingly amazing thing? There are 7.4 billion people in the world, and God decided He still needed you here. That’s how absolutely special you are.

Like, He thought about it and decided that we need a “Krista” somewhere on this earth, and He has a great purpose just for me. I can’t even really wrap my mind around that, other than the fact that I try my best to make a positive impact on those I come into contact with every day… Because maybe part of my purpose of being here on this earth is to help touch an individual — or a group of individuals. I don’t know what my big purpose in life is, but I do think I have a bunch of small reasons I am here and valuable to others, which are just as important.

There is absolutely a purpose each and every one of us is here, and my hope for you is that you realize that and continue to work toward whatever it is that makes your heart beat fast. I know for me that some of the scariest things I have done have been the most rewarding. The writing that makes me the most nervous to post on here is what really moves people and makes them feel less alone in the world. At the end of the day, I believe that’s one of the biggest reasons God created me — to help others realize their heart might feel a little broken sometimes, but that our Creator can heal them and put them back together again. It’s okay to feel lost in a broken world and as long as you keep pushing forward something beautiful can come from heartbreak.

Keep going, and never forget that you are loved, and that YOU MATTER. I can’t say that enough. You matter, you are loved, and you belong here.

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What To Do When You Get Diagnosed With A Chronic Illness

Getting sick with a chronic condition is life-changing and confusing. I have become a bit of a pro when it comes to being sick, so here are a few tips on what to do if you or someone you love ever get diagnosed with a chronic illness:

  1. First and foremost, do not panic. Take a second to breathe, and realize that just because you now have a name to label your symptoms doesn’t mean it’s going to get worse here on out. If anything it actually gets much better since you are able to explain why certain things happen to your body and how to treat them.
  2. Realize that it’s normal and okay to cry. Doctors have seen it all, and if they’re good at their profession they will be sympathetic towards your feelings (And if they’re not, it’s definitely not you — it’s them).
  3. Do not go on Google! I cannot stress how important it is to process everything before reading dozens of articles and Facebook forums about your illness. Whether it’s an absolutely extreme version of your illness or a post venting about how difficult life becomes with this condition, there isn’t a lot that will help you out that very same day. Give yourself a little time and ask your doctor questions, rather than relying on WebMD to give you a cure. I found that negativity can really have a direct effect on your health and healing, which is why I try to keep things as stress-free as humanly possible.Screen Shot 2017-03-20 at 1.54.29 PM.png
  4. On a related note, make sure to find out how to contact your doctor in case you need to reach someone with a question about symptoms you might be having. Most doctors who deal with people with chronic conditions have a way of reaching them, whether it’s a nurse hotline or an email address. I have a neurologist who offers an in-home service where I can email him with questions or prescription refill requests, and he replies within a day. It’s been a really valuable resource and I tend to stick with the doctors who really care about their patients.
  5. If a little bit of time goes by and you’re still afraid to research what you have, ask a family member or friend to do some research for you — then leave out the really unhelpful negative information. I’ve found a lot of people with chronic conditions can be incredibly pessimistic and bitter — and they have every right to be! But the more you can try to keep your spirits high and look towards your bright future, the better off you will be. I very firmly believe in the power of positive thinking, and although that may not be able to heal your body, it can at least keep your mind in a healthy state.
  6. If you do have a hard time staying positive about life, though, there is absolutely no shame in seeing a therapist or counselor to vent your frustrations to. Never feel bad about needing extra help. It doesn’t mean you aren’t strong — sometimes I think being able to ask for help is the hardest thing a person can do, but it can be life-changing.
  7. Lastly, be open with friends and family about what you need. It can be difficult for loved ones to know how to react or behave when someone close to them gets sick, but that doesn’t mean they don’t want to be there for you. Giving people a very concrete thing they could do to help — such as talking on the phone for fifteen minutes a day or making a meal for you and your family — is actually really helpful.
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I never in a million years thought I would ever need a wheelchair at 22 years old, but by the time I traveled to take this picture I was able to make light of a difficult situation.

I know how scary and life-changing getting a chronic illness is. I remember getting diagnosed with POTS like it was yesterday. Collecting a few other “syndromes” and conditions along the way hasn’t been easy, but I’ve at least had enough experience to stay a little calmer when I learn something new about my health. Finding five things you are thankful for despite being sick is something I try to do on my most difficult days. I am thankful for my family (This includes Macy!), Robert, my best friends, the sunshine, and chocolate. That was a really easy list, and I grouped a bunch of people together. Despite not having the life I had dreamed of for most of my childhood, I still have some pretty incredible blessings.

b l a c k o u t.

Vrrrroosh.

My pulse is racing and I feel the floor beneath my bare feet become colder, harder.


Have you ever fainted before? It’s scary.

I’ve become kind of a pro at passing out, mainly because I have had a lot of close calls, rather than eating the floor on a regular basis. Ever since I got sick with POTS three-and-a-half years ago I’ve learned what it’s like to faint.


My heart can’t stop. It keeps speeding up and feels like I’m going downhill in a car and my brakes just failed. Instead of being able to pull an emergency brake or slow the car’s roll, it speeds up at a terrifyingly alarming speed.

Thudthudthudthud.

Shit. I crouch to the ground as soon as my brain catches up to the rest of my body and realizes that I am going down, whether I want to or not.

This is what I’ve trained for.

My body has been trained for fainting. I have done it so many times that I know how to respond. Everything always happens so fast. Racing. Dizzy. Blackout. Nausea. Sweating. Falling. Ground — always in that order.

Ground.

As soon as I am down on the ground I feel the cold tile behind me. I’m cold and wet, but don’t really notice until my hand slips. The bath was a bad idea. It helps with the pain, but my heart can’t handle the heat. I feel around behind me, blind, just to be sure my head won’t hit the hard floor when I lie down in my postural position. I close my eyes and brace myself. There’s no change in my vision yet, but I hope it comes back soon, as my spatial awareness isn’t so great. This can pose for a dangerous problem when I’m on hard ground. Usually I black out on the plush carpet when I get out of bed too fast, but sometimes it happens in places that are a lot scarier than that.

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This is what blacking out looks like. It starts off looking like a crackly television, then turns to this.

My hands slide slowly behind my body as I sit on the floor and ease the rest of myself to the ground. I close my eyes, praying I won’t vomit and reminding myself to take deep breaths until it’s all over. I don’t know if one ever really throws up when they’re about to faint, as it’s never happened to me, but it always feels like I will.

Ten seconds go by. Twenty. An hour?

It feels like my time on the ground before my vision finally starts turning slightly colorful and blurry again is lasting a lifetime, though I know it couldn’t be more than thirty seconds. First it’s as if I’m wearing high prescription glasses that my 20/20 vision isn’t used to. Then everything gradually comes in to focus. I can finally see again and the blood rushes back to my brain.

Stupid, stupid, I think to myself as I realize what I had done. The water in the bathtub was too warm for a POTS patient, and I stood up way too quickly when I made my move to get a razor. I had hurt myself on accident by taking a high risk for a minimal reward. I hate not being able to shave my legs in the shower (because of the postural change that occurs when I do), and all I wanted was to have a smooth finish after my bath. I should have known better than to stand up quickly from a warm bath, but I want so badly to be normal again and not to think about every little move I make and how it’s going to affect me for the rest of the week.


Sleep.

Any time I have a close call with my heart acting up it makes me incredibly tired.

As soon as I gather the right amount of energy to safely stand up, I shut my eyes tightly and push lightly with my hands to lift the rest of my body up. I throw on a robe — not bothering to dry off — and walk with a blank mind and body into my bedroom and ease into my warm, soft bed.

Soon I am out again, but this time the darkness isn’t scary — it’s peaceful. My brain feels like it can’t function again because it needs rest, but that’s okay. I’m finally safe; I’m in the least likely place for my body to attack itself again.

 

My Story Part 2

The next morning I woke and went to grab breakfast with my mom. I had been excited the night before, as we were scheduled to go paddleboarding. I felt slightly nauseous, but dismissed it as nerves for the anticipation of learning something new.

I gnawed on a donut with one hand as I slipped on my swimsuit with the other.

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By the time we got to the paddleboarding hut I was feeling pretty ill (And regretted giving in to the temptation of Duck Donuts). I wondered why I was so nervous about something that was on still water. I am a good swimmer and wasn’t afraid of falling in; it made no sense. I sat outside and tried to focus on how good the sun warming my newly freckled skin felt until we were called to go to the dock.

We all took turns hopping onto our boards in the calm bay and pushed off the dock.

Thirty seconds in I felt the seasickness setting in. How is this happening so quickly? I wondered to myself. I always get nauseous on boats, but it usually takes a little bit of time for everything to set in.

“Am I supposed to feel dizzy?” I asked the instructor as my vision blurred slightly.

“Uh, I don’t think anyone’s ever mentioned that before,” he casually replied with a minor look of concern splashed across his face. “Keep me posted on how you’re doing.”

I nodded. I hated more than anything being high maintenance so I wasn’t about to make everyone turn around for me, but I didn’t remember feeling that sick in a very long time. I tried to make the most of things as I paddled close behind the instructor. My brother and I giggled about the showoff who had left the group and gotten stuck in the marsh, but I felt like I couldn’t focus on anything. The fogginess in my head made this almost feel like a dream.

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Realizing I was close to actually getting sick, I told the group I was going to turn around and went to sit on the dock. My head spun, but I figured I would acquire my land legs again soon enough.


Later that night I felt a little better, so we went out for dinner to a local homestyle BBQ joint. I was excited; I love ribs and couldn’t wait for our meal. Once we got our meal nausea set in — hard.

“I think I’m sick,” I announced to my family. My head was spinning and I didn’t laugh at any of the jokes that everyone had been telling. I rested my head on the table as we waited for the check. Great, it’s just my luck that the one time I get the flu we are at the beach, I thought to myself. I had gotten sick a lot living in New York City the spring before, but other than that I was a pretty healthy person; I couldn’t remember the last time I had the flu.

We went home and I rested on the couch. I asked my brother to get a 32 ounce Gatorade from the fridge and sipped on it as I gazed past the television while The Office played in the background.

I reached for my drink and was startled to find that it was empty. My mouth felt dry and I couldn’t swallow. Why wasn’t there any spit?

I chose another Gatorade from the fridge and drank it reluctantly. I didn’t want to puke yellow Gatorade all over the couch, but I also felt like I needed more to drink. Two Gatorades down, still no spit. My body began to panic as I realized I was disturbingly dehydrated. I took a deep breath and drank a solo cup filled with water. Then another, and another. In total I had 14 different drinks and noticed absolutely no change in my hydration. Tears welled up in my eyes and I wondered why my body was letting me to expel water from my eyes, but keeping it from my mouth. Something wasn’t right. In fact, something was very, very wrong.

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A few hours later I lay in bed and still felt my heart racing. It was getting worse. I had noticed a rapid heart beat a few weeks ago, but pinned it on feeling restless about the problems my boyfriend and I were having. This time was different, though. It wasn’t just a short spurt; my heart was racing and wouldn’t stop. I was nauseous. The room was spinning around me. My limbs felt heavy and numb.

This is the end, I thought. It may seem hilariously dramatic to everyone reading this, but before I knew what was wrong with me — a very sudden onset of postural orthostatic tachycardia syndrome — it really felt like my body was quickly shutting down on me.

My life flashed before my eyes, but it wasn’t the way it does in the movies.

Instead I just felt a sense of regret. God, if I live through tonight I promise I’ll make something of myself and try to honor You, I bartered. I’ll get to know You better. Please don’t let me die. I don’t want to find out what happens when I die yet.

I hadn’t taken enough time to focus on my faith and prepare for what would happen when it was my time to leave the earth. I wanted to feel more comfortable with my ending; I hated how unsettled I felt with the fact that this might be my last night here.

I wasn’t sure about much, but I was certain that something was very wrong with my heart. A 22-year-old shouldn’t be having a heart attack, but that was the only explanation I had for the sensation I was feeling. I called for my mom. She rushed downstairs and came into my room. I told her how I was feeling and she crawled into bed next to me. I didn’t know why, but I didn’t want to go to the emergency room so far away from home. I felt like I was on my death bed, but I also didn’t feel like anything was adding up. I was healthy. I took care of myself. Logic told me it couldn’t be anything serious, but I felt otherwise.

That was the longest night of my life. I turned on the television in an attempt to drown out the sound of my heart racing against the pillow. I tried to ignore everything that felt wrong; I didn’t want to rush around a foreign town to find a doctor at 2 in the morning. If I lost consciousness surely my mom would notice and take care of getting me the help I needed. I just wanted to make it through the night to go home the next day to my familiar doctor.

The room shook. I looked around, startled, and noticed it was just me. I was suddenly freezing. I wrapped the fleece blanket and fluffy white comforter around myself and began to cry. There were so many new sensations I had never felt in my life and something was definitely wrong. I thought of my family, and I thought of the little girls I babysat. I hoped people would miss me if I wasn’t around anymore, but I also wanted them to be okay. I began thinking more about my own mortality and shook harder. My relationship with God wasn’t near where I wanted it to be. Now that I felt so delicate I wanted to be certain of what was going to happen to my soul. I prayed to God, asking for another chance at life. I was scared and I certainly didn’t feel ready.

The nightmare continued until the next morning.

I drifted off a few times until my heart beat or the uncontrollable shaking would wake me. I focused on my breathing, expecting it to stop at any second, but prayed it wouldn’t.

The next day we piled into the car and I tiredly leaned against the front window. My body was weak, but had made it through the night. Despite being exhausted and sick, I was very thankful that it was finally morning.

I noticed the rapid thudding in my chest and wondered whether I had some sort of new superpower in which I could recognize every single thing that was working in my body. Is it weird I’ve never noticed my heart beat before? I wondered to myself. I knew it shouldn’t constantly feel like I was running a marathon as I was sitting in the passenger seat, but I also knew I wasn’t dreaming and that terrible life-changing things just did not happen to me. My life was good. My life was normal. The biggest struggle I had going into college was actually coming up with a hardship to share in one of my school applications.


I didn’t know it then, but I wasn’t just sick with the flu or something that would go away after a week or two of bed rest. My life is forever changed, and I will share my experiences running from doctor to doctor and how I learned to cope with this new lifechanging news on Tuesday.