Strange Things I Miss

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

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

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

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

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

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

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

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

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


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

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.

Asking For Help

Part of me feels strange when I tell people I have a chronic illness — it doesn’t feel real that I am very different in a big, foreign way — but the other part can’t really remember what it’s like to be normal. It almost seems like the rest of my life was a dream, and it’s mind-blowing that I used to be able to jump out of bed quickly without blacking out or that I could carry my own backpack from class to class. I can remember what it’s like to run, but I can’t recall the feeling of independence that should have gone along with this privilege. Needless to say, I have had to swallow my pride a lot the past four years, and ask people for help.

I remember feeling incredibly uncomfortable when my Master’s class went to the university library and we were told to bring our bags because we wouldn’t be going back to that classroom. I panicked a little on the inside, as my dad always walked me to class early and picked me up late so that I could be discreet about getting help carrying my stuff, but I knew I would be in pain for a week if I didn’t ask someone to take my bag for me.

My face got warm as I approached one of the only guys in the class. “This is going to sound really weird,” I started, “but would you mind carrying my backpack to the library for me?”

I could feel my body turning the bright shade of red it seems to love so much when I am uncomfortable. I tried to think of something else — anything else — that would make my autonomic nervous system cooperate, but I ended up just coming to terms with the fact that I looked like I suddenly got a terribly bad sunburn under the florescent lights.

“Sure, no problem,” he interrupted before I could go into my spiel about why I need help taking a fairly light bag from one part of campus to another. I explained my situation quickly as he picked my bag off the floor, and was relieved when we shifted topics to chatting about English-related topics instead of my personal problems.

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Since that day I’ve gotten [a little] better at asking for help. I still have trouble vocalizing when something hurts unless it’s an unbearable pain, and I try to be as independent as possible, which sometimes results in injuring my muscles and joints further. I try to remember that everyone has something they need help with, even if it’s not the same thing I am struggling with.

Many of my friends have even become so great at automatically helping without me even having to ask; this blog has been an amazing platform for raising awareness for twentysomethings with chronic pain, and I think people understand a lot more than they would without reading about the experiences I have on here. Thank you to each and every one of you for reading and caring about the stories I have to tell. It means the world to me to have support from friends, both in person and for this little space on the internet.

Today’s Lesson: I always joke to my friends to “channel Krista” when they want to avoid a guy making a move on them on a first date since I was kind of a pro at that back in the day. Today, I want to encourage you to pull a Krista and ask for help when you need it, even if you’re afraid to. Whether you have a broken heart and need a friend to talk to or need assistance with a physical task, people are always a lot more willing to pitch in and help out than you initially expect. We all have different things to offer the world and ways we love to serve, and I’ve often found that when people can help another human being it makes them feel good as well.

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.

A Visit From The Fire Department

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

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

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

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

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

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

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

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

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

Hello From The Other Side

Dear Torchy’s,

I live outside of Washington DC, so we are over 1,000 miles apart. I used to date someone from Texas, so I got to visit you regularly, but he and I broke up awhile ago and I haven’t been back since.

I miss you, Torchy’s. What I really miss most is your queso. I never even liked dip until I tried yours, but I quickly became addicted. Every time I’d go to Texas I would make sure to visit you several times a week.

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Photo courtesy of @torchystacos on Twitter

So I have a crazy request.

Could you please send me the recipe so I can make my own here in DC? It doesn’t appear that you are moving here anytime soon and I’m not sure that I’ll ever find anyone who makes queso quite like you.

Love Always,
Your Biggest Fan