Tag: Chronic

Strong (adj.)

~ kristalauren ~ 19 Comments

Today I would like to dissect what it means to be “strong.”

This has been a word used to describe me by so many people since I graduated college, got POTS, and went through a number of difficult trials, but it still feels kind of funny when I hear someone throw this adjective next to my name.

Dictionary.com defines strong as,

“Mentally powerful or vigorous,”

but it doesn’t offer any tips on how to be strong or what kind of trials make you strong.

I was made strong. I didn’t choose to be strong and I am in no way admirably resilient. Before getting sick I was used to a fairly comfortable life, and never in a million years thought of myself as tough or someone who would face trials well.

Almost 4 years later, though, and here I am. I had a choice to make when I got sick. I could take what the doctors said, admit defeat, and recognize that my life would never be the same, or I could fight for the best life I could possibly have. I quickly chose the latter. This involves keeping an open and optimistic mindset, being incredibly dilligent with my doctors appointments, physical therapy, and diet, and finally — learning how to rest.

When I first got my diagnoses I asked through tears whether I’d ever get better. The nurse laughed and told me I wouldn’t and my mind immediately went into a dark abyss, thinking about a long life of dizzy spells, fainting, and feeling miserable. I was incredibly lucky to have my incredibly encouraging mother with me, who followed me to the parking lot and said the nurse didn’t know what she was talking about. She said I needed to take each day as it came to me, and think positive thoughts. To this day I believe this is one reason I am slowly getting better and have been able to make peace with my new life.

I’ve had POTS for three-and-a-half years now and haven’t had a week off from going to visit some sort of doctor. I typically have 2 physical therapy appointments and either acupuncture or a massage to work on managing my chronic pain, as well as regular visits to my cardiologist, neurologist, and endocrinologist. I go to the gym 5 days a week — even when I am feeling awful — because the worst possible thing for a POTSie to do is get deconditioned. This involves a short 30 minute recumbent bike ride, as I could easily faint if I am in an upright position. I get B12 shots every other week since I am deficient in it and B12 seems to be a link to chronic pain. Then I have to take a lot of time to rest so that my body can settle down a bit. I get worn out incredibly easy, and a trip to the grocery store turns into a long ordeal because of the recovery time afterward.

Lots of POTS patient develop adult allergies, so I can’t eat many of my favorite foods anymore. I have given up nightshade vegetables (Potatoes are my favorite food and I miss French fries dearly!), gluten (Now I am the butt of so many jokes), and I really limit my dairy and sugar intake. I don’t drink coffee at all, partly because I can’t have caffeine, and partly because I just can’t have coffee, period, and I don’t drink alcohol at all anymore. The coffee is definitely a million times more difficult.

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Lastly, I have had to learn to listen to my body and rest. This is such a hard thing for me to do, as my mind is incredibly active. Anyone who knew me before I got sick knows I love to work and play, so sleeping and rest were never really a big part of my vocabulary. I joke to my friends that I’m just catching up on all the time I missed in my life before, but it really is a difficult thing for me to wrap my mind around. I always have a million and one things I want to do and write about, however my body isn’t very kind to me. Writing hurts after ten minutes, and the dictation software I have used is grueling. I can’t sit at a desk chair very long without having a lot of pain in my shoulders, and some days I can’t stand without feeling dizzy. Sometimes all I can do is rest, and I’ve learned that it’s okay to spend time listening to podcasts and watching HGTV when I really can’t do anything else. Yes, I would much rather be working and making a living for myself. I wish I could live in New York and write for a magazine, I wish I could have a paycheck to save for a new car or fun wardrobe, but that’s just not in the cards for me right now. Right now it’s my job to focus on getting better, keep taking care of myself, and trust that God will make something beautiful out of my struggle. 

The best advice I could possibly give anyone going through something tough is to take each day as it comes to you. Worrying about things in the future that you cannot control won’t help you change them, and looking back on the past won’t make your present any more satisfying. I know what it’s like to feel helpless and I know what it’s like to feel like life isn’t fair. The greatest feeling when your world is crumbling in on you is when you finally learn to give your problems to God and let Him take care of the things that are outside your control.

Today’s lesson: If I can be strong, you can too. I’ve always thought I am an incredibly average person in most regards, which should offer an incredible amount of encouragement to anyone reading this. If I can do, so can you.

My Biggest Insecurity

~ kristalauren ~ 9 Comments

Ooh, juicy Krista gossip! Things like insecurities are so interesting to other people because they’re often very private things. You usually don’t know what other people in a crowded room are worried about because you’re too focused on your own things.

My biggest insecurity is weird. When I was younger I would have answered something purely physical. These are still very valid insecurities, but thankfully I have been able to get past beating myself up for my imperfections.

Today, though, I have something new in my life — my health.

For the most part this isn’t a crippling insecurity; it’s something I only notice on rare occasions, but the more I branch out, the more it hits me that I am different now. When it comes to dating or making new friends it’s still so weird introducing myself and explaining that I have an autonomic nervous system disorder, which is why I am (insert whatever odd action I am doing to keep myself feeling well). POTS is an invisible illness, which means people can’t tell I’m sick from just looking at me, but if anyone decides to spend even a short amount of their day with me they’ll find that I do things that clearly set myself apart from the average twentysomething.

The thing I’ve been afraid about most in my dating life is that I’ll keep whoever is with me from doing fun, normal activities. I can’t travel super-easily, I don’t drink, and I sometimes have to take several days to muster up enough energy to just go out to dinner with friends. My full-time job is “getting better,” which involves going to a million different appointments every week, regular trips to the gym, resting a lot, and taking a class for my Masters to keep me sane. I try to be positive about things for the most part, but I do sometimes get worn out and frustrated with the very slow progress (Or sometimes taking a step or two in the wrong direction).

I’m not used to missing out on things I want to do. I still feel disappointed when I realize I can’t do things like go to the WMZQ fest at the last minute or when I have to watch my friends go surfing while I sit and sunbathe on the beach. If I’ve had this illness for three and a half years now and am still not used to everything I have to miss out on, how am I going to find someone who is okay with missing out on so many of the great things that life has to offer when his body works just fine and he can still enjoy the activities that I miss so much?

It breaks my heart that my mind works this way, but I’ve slowly learned that the people who are in my life don’t love me because of the activities we do together — they love me for my mind and for my heart. The people who are close to me know that I am a kind, caring, and thoughtful person, and the many different character traits that I do have to offer in a relationship. I’m a good friend, I often put other people before myself, I am genuine, and I love others deeply. These are the qualities that really matter in a relationship anyway; POTS is just something that happens to come along with the whole “Krista package” now.

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Today’s lesson: Sometimes we just need to remind ourselves of our strengths, rather than honing in on the things we don’t have. The past three years I’ve realized that we don’t give other humans enough credit. There have been plenty of people who still want to be my friend or date me, despite the laundry list of things I can’t do anymore. People often do look at your heart above all else, and it has been so beautiful learning that our souls mean so much more than the physical bodies we have been given.

My Shade Of Blue

~ kristalauren ~ 5 Comments

I have a disability.

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

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

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

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

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

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

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

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

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

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

A Day In The Life Of Pain

~ kristalauren ~ 6 Comments

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

I rarely curse unless it’s when I write about something that upsets me or when I’m in terrible pain. “Rarely” changed to “several times a week” when my chronic widespread pain came about.
6:20
I make my way over to the couch, carrying my premade dinner in one hand and a salt shaker in the other. My pain dictates where I sit every night. Sometimes my neck is killing me and I need to perch at the dinner table where I probably belong. Other days my shoulders hurt or I am dizzy from a skewy autonomic nervous system disorder and need to recline further on a couch. Not long ago I had a lucky streak and thought things were taking a turn for the better. Those days I got to choose where I wanted to sit and whether or not I wanted to get out of the house.
6:24
It’s hard to eat when you’re nauseous, but severe pain rarely comes without a guest. The headaches are the one I dread the most, but neither symptom is a fun one to deal with. I think about my physical therapy and how it’s three days away. I don’t feel like I can make it that long without having needles stuck in my arms and wiggled around in the giant, painful triggerpoint knots until it hurts so much I want to scream, but the aftermath of dry needling is worth the pain I go through of getting it done. My arms stay painfully sore for 24 hours after, but my chronic pain levels do drop significantly for several days when I do get needled.
6:27
I should document the pain I am having in my “symptom journal,” but quickly stifle the thought. It’s ironic after all; it hurts my arms to write down the problems I have all day, and frankly I am in pain almost all day, every day, so what’s the use?
6:45
I can’t take it anymore, and decide I need some sort of relief. It’s either doing my postural series, or taking a hot bath. Going to sleep early isn’t an option, as it just means lying in bed several hours before my body lets me drift to sleep. I’ll opt for the bath. Again.
7:00
I used to love taking baths to unwind after a long day at school or work. My eyes graze over my past sanctuary, and I think back to how nice it was when the calm, warm water felt relaxing over my skin. Tears well up in my eyes as I write this, as I don’t remember the last time I have felt “relaxed.” The last time I sat on a fluffy bed I thought about how nice it was that I could actually fall asleep somewhere other than the bed at home I have taken years to improve as my symptoms got worse. I don’t remember the last time I genuinely felt comfortable somewhere.
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7:03
I slip into the hot water and quickly decide I need more cold if I don’t want to pass out. POTS can be very finicky, and I don’t want to have a new problem — possibly drowning — on my hands. I have enough medical issues to deal with right now, thank you very much!
The water cools down quickly and I lean back onto the towel-pillow I made at the edge of the bath. Gossip Girl is playing softly in the background, but I quickly find that I can’t get comfortable enough to watch the screen in the tub. I turn off the iPad and on The Kane Show Podcast I had been listening to for the past several years.
I close my eyes and lean back. Pain shoots from the base of my neck to my head, and I twist and turn until I find a spot that doesn’t hurt as much. At least this will be good for my arms, I think to myself as I float them back and forth in the warm water.
7:16
Everyone tells me water is therapeutic, and I finally start to agree. My muscles are slowly calming down and I feel like I can actually think.
7:50
My 47 minutes in heaven are over. I have to get out of the bath now, unless I want to look and feel like a prune the rest of the evening. Plus the position is terrible for my aching neck, and I don’t want to trade one pain for another. I have learned a lot about ergonomics in the past two years, and wish I had known about them before my first several bouts of chronic pain.
Now I am very careful to prevent any kind of pain I possibly can. I feel pretty high maintenance when I go out with friends, but they at least understand and can forgive me for it; pain, on the other hand, can not.
8:03
I’m in my PJs and ready for bed, but can’t go to sleep yet. It gets tiring flipping back and forth, as I never have a comfortable position, and I don’t have enough energy to do this for more than two hours. My body doesn’t usually let me fall asleep until after midnight, so I go downstairs to wait.
8:05
I open the Facebook app on my phone to take a look at the world I was once a part of. I’ve always realized life on this website isn’t really realistic, but I believe my guess that the majority of my twentysomething friends don’t face chronic medical issues every day. Some of them do, though, and many of those people look like they are normal. I know that better than most.
8:06
My arms hurt. I snap my elbow and realize I need to go back to my world. I close the app and turn to the television.
8:08
I realize nothing has helped as much as I had hoped. I heat up my herbal neck pillow and rest it on my neck.
Different nights call for different activities, but on really bad evenings I can’t really think and will tune in to an audiobook, catch up on whatever reality TV show I’m into, or visit with friends. Almost everything hurts — I can’t read or write, as both of those involve some sort of use of my arms — but I always try to stay optimistic and realize that one day I will have a day where I feel good again… Just not today.
I searched the document and the word “pain” was listed 21 times in the 2 hour time period I documented. Instead of editing it to make it more readable, I left the number because I felt it touches the surface on how hard it is to deal with so much pain, day in, and day out.
22.

#Blessed

~ kristalauren ~ 8 Comments

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

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

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

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

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

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

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

“Did You Add Me Yet?!”

~ kristalauren ~ 7 Comments

Ugh! Creepers are crawling all over the suburbs of DC.

As I’ve mentioned several times before, I have an autonomic nervous system disorder and spend quite a bit of time visiting different doctors. I have a primary care doctor, two cardiologists, two neurologists, a physical therapist, and a bunch of people I have been to for a wide variety of medical testing. A little joke some of us POTSies have is that we’ve seen more doctors than movies this summer. #TRUTH.

Anyway, this obviously means there are also nurses and people who check me out before I meet with the doctor. I was at the cardiologist recently and there was a new male nurse who took me back to record my blood pressure, heart rate in several different positions (lying down, sitting, and standing), and a bunch of other things that never cease to confuse me. The heart test involves putting a bunch of electrodes on my chest that are hooked up to a giant machine that records all of the information for the doctor to look at. As I pulled up my shirt and he began placing the sticky circles in the proper places, he started chatting about how much he enjoys lifting weights. I told him that I used to love running and that it was a goal of mine to get back into it again one day. He told me that running was great, but lifting weights is much better. To each his own! I know weight lifting has a bunch of great health benefits, but running is just so therapeutic for me and is genuinely one of my favorite activities.

We kept talking a little longer and he told me that I should follow him on Instagram. I asked him if it was a fitness account or something, as I figured he was probably just trying to grow his fan base, but he told me that it was just a personal page.

Weird, I thought. It didn’t seem like a super-professional move, and I had literally just been talking about a guy I was dating, but I didn’t think too much of it. I figured he realized I wasn’t really interested, as I didn’t ask for his handle or anything else about his account.

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This guy actually looks SUPER similar to the nurse I met, haha!

After he was done writing down my numbers he led me to a second room for more tests. He left for a bit, and appeared fifteen minutes later to hook me up to another machine.

“So, have you followed me on Instagram?” he asked casually.

“No,” I replied, confused. “I’ve just been playing chess on my phone.”

I purposefully didn’t say that I would or ask for his handle, as I really wasn’t interested in mixing my cardiology friends with my personal life. He went on to give me the little tube to breathe in and stuck me on the bike. Here is a picture of what the contraption looks like for reference; do you think I look like Bane too?

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This was my first time doing this test a few years ago; I had my mom take a picture, as the crazy contraption reminded me of “The Dark Knight.”

Anyway, he rambled about a few of his favorite foods and then told me I just had to follow him on Instagram when I was done with my exercise.

3, I noted to myself. I was huffing and puffing, and slightly annoyed this time. I don’t go to the doctor’s office to make friends or get dates. I’m there because I have a chronic illness and would like to get the best medical care possible. This isn’t a fun little trip for me; it’s something that I hope is another step towards getting better.

I finished my workout and he recorded my results. I was led to a third room where the doctor would eventually meet with me. “Don’t forget to follow me on Instagram,” he reminded me as he headed toward the door. “The name’s MurrayJeffersonLincolnGray.*”

What the heck?! I thought to myself. First, how in the world was I supposed to have found him before when I didn’t even have his first name, much less the three others that followed. Second, he really needs to take a chill pill. I am not adding this character on any of my social media sites, and he has clearly crossed a line of professionalism.

I decided to go to his page to see why it was such an urgent matter that I follow him. The first thing I noticed was that he only had 205 followers. This made everything that had happened just that much weirder, as it was clear this fellow didn’t push his Instagram to everyone — unless, of course, all the others were too creeped out to follow him as well, which is a very real possibility.

The second thing I noticed really gave me chills. He had posted photos in his underwear! Not just like a goofy selfie, but a weird pose and clenched butt cheeks. He had pulled the briefs to the side so you could see how much he had been working on his glute muscles.

YIKES.

I was speechless. I wasn’t brave enough to keep scrolling through his account, but at first glance he seemed to be really into post workout photos and his butt. If you want to do this, cool, but don’t try to get people in your professional life to follow you. That is so wrong and is a terrible idea on so many different levels. I also noticed that he had a girlfriend, which also seemed odd. He had been pretty flirty all day, and in all honesty I would be ticked if my significant other kept trying to get rando clients to add him on social media accounts.

After the terrible assault on my eyes had occurred, I hit the “Block” button at the top of the screen and clicked out of the app. I pinched myself, wondering if this was a strange dream, and jumped as my nails dug into my skin. Nope. This was an incredibly strange reality.

By the time I was leaving the office he had reached 5. He asked me 5 times to follow him on Instagram, and finally got rejected. I love that strange and awkward things happen to me so often because I have great stories to tell, but this one was just a little too out there for me. I don’t want to have to deal with creeps at the doctors’ office of all places, and felt uncomfortable enough that I will not be returning to this particular nurse anymore.

What do you think? How would you have reacted if you were in my shoes?

*Obviously I changed the handle around a little, but it was super-similar to this made up one.

My Story Part 2

~ kristalauren ~ 1 Comment

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.

A Dizzy Blonde

~ kristalauren ~ Leave a comment

I just woke up and it is almost 11 PM.

It was strange, too, because I happened to wake in the middle of taking a shower. I stood there in the center of the clean glass box while a few songs hummed on my iPhone, letting the water rush over face and hair. All of a sudden my eyes opened and it was like lightening had struck my brain and woken it up.

I looked around, wondering what time it was and why I couldn’t remember what had happened the rest of the day.

This is a day in the life of the chronically ill.

After being sick for three years I have progressed so much. I feel so blessed to be where I am today, and that more of my days are good than bad. In fact, many of my symptoms have disappeared completely! Today, though, was rough. I was so dizzy that I had to spend my time lying on the couch or resting in between packing a few items in my suitcase for my weekend beach trip. The view from my couch reminded me of my illness three years ago when that was my entire life. It reminded me of how thankful I should be every single day, despite the symptoms I do have. I am so blessed that my brain functions normally most days (My symptom along with the dizziness today would have been called “brain fog” by the POTS community), and I am blessed that I am getting better, even though I’m not there yet.

I will write more later, as I am still “waking up” from my fog, but I just wanted a reminder to myself to be thankful most days for the health that I do have.

 

Heartbeats

~ kristalauren ~ Leave a comment

I am close to God when I feel my heart beat.

The constant rhythm keeps me awake at night, but it reminds me that I’m so lucky to be alive. Sometimes I rest my phone on my chest and watch it roll gently up and down. Even when I close my eyes again I can feel the beautiful tempo singing to me, strong and steady.

I am close to God when I see my heart beat.

I watch it work in all of its beautiful glory when I get my echocardiogram done for the fiftieth time. My heart is reliable despite all the wear and tear it has experienced. Even when nothing else in my body seems to be working properly, my heart is going overtime pumping blood — however little — to my brain and through my veins to keep me alive.

I am close to God when I rest my head on my puppy’s tummy.

I hear her tiny heart racing at a pace much faster than my own, and her itty-bitty tummy digesting kibble. She doesn’t do anything to keep herself alive and healthy; she just lives.

I think of how incredible it is that every living thing has so many intricate organs that each serve their own purpose. Even with a broken body I can recognize how absolutely incredible the human anatomy is. I am broken, but I’m still here. I still have a beautiful mind, I still have a chance to make a difference in the world, and I can still love. There is absolutely no way there isn’t a God. We are far too complicated for me to believe that.

My faith is a roller coaster ride, but I have it — When I feel my heart beat.

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My little baby was created with love and care, just for me.

Moving Forward

~ kristalauren ~ Leave a comment

I called my best friend late last night in tears as I felt frustrated and angry about my chronic illness. It’s hard to be in pain all the time and it is exhausting being sick without ever getting a break.

This morning I woke up with a text from her to check my mailbox and found a package with her favorite gluten-free snacks (I just started a GF diet to see if it might help my pain), a Star Wars mug, a frame with me and my special date, and a beautiful card. I teared up as this present came with an incredible reminder — life is not fair. I don’t have a properly working body, and I don’t have a normal life for a twentysomething. What I do have, though, is an unfair number of people who love and care about me. That is something I feel blessed for each and every day. I am going to end there, as I cannot even put into words how thankful I feel for the love and support I have.

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This was easily one of the most thoughtful things I have had anyone do for me. I am so blessed.

This week I’m going to be writing more about faith and frustration.

I’m a little nervous, as some of the things I have written are very personal and scary to address, but I would love to share my journey with Jesus with my readers — I don’t think it will be quite what you would expect from me.