God Is Here, But Isn’t Telling Me Something

I’m in so much freaking pain right now I don’t know if I want to throw up or cry. Preferably both would probably make me feel better. I don’t feel like this nearly as often as I used to, as my health is improving, but it still feels like it’s going to last forever. I can’t focus on anything else and just want the day to be over so I can have a clean start with refreshed muscles.

I always try to figure out why I’m in more pain than usual so it won’t happen again. Often, there isn’t a big cause — it’s just maybe the weather (I SWEAR I get bad headaches more often on rainy days) or the fact that I was standing too long in a day my POTS was acting up. There are other times, though, that I know I’ll feel bad the next day. Taking an airplane or sitting down for long periods of time, being much more active than usual, or staying out late are all things that can cause pain. Writing causes pain for me. I wrote a lot today. I didn’t focus on my ergonomics the way I should have. That might be a big reason I’m at an 8 and want to cry now.*

Some people might take this as a sign from God that writing may not be their thing. After all, my hands become stiff and my pain creeps up my arms and shoulders the longer I’m writing at a computer, so the writing does quite literally hurt me. It isn’t comfortable the way it used to be, and you’d think if it was my calling I wouldn’t have to take breaks to pace myself so much. Writers can sit down at a computer and churn out words for hours on end without taking so much as a bathroom break. This thought has crept into my mind before. Why can’t I do what I love and what my heart desires most as a full-time job? Why did my trajectory change so drastically? Is it because it isn’t my destiny to be a writer and I should look for something else to dig in deeply?

I am reading a book right now that talks a little about “signs” and Christianity. It talks about how sometimes things that happen are not as monumental as we want them to be — they’re just little blips in the grand scheme of things. Not everything in the world is a sign from God, even though He is always here with us. My pain that is linked to writing is not a sign from God that I need to stop. I know I am supposed to be here in this little space of the Internet, and it isn’t some big selfish desire my heart has. It’s just a deep-rooted yearning I have to connect with others, share my stories, and help each of us feel less alone in the world. The chronic pain I’ve dealt with might just be yet another way to connect with people, but it isn’t a sign that I need to stop writing. Sometimes people wait too much to try to listen to what God wants them to do, rather than just strapping on their boots and trying. I think we sometimes underestimate God and don’t realize that if we’re going in the totally wrong direction, He can find ways to pull us back on track. The most important thing is to get up, and go for what we think can change the world. If we’re wrong — which people often are — we can keep trying until we get things right. After all, that’s an enormous part of what it is to be human, right? Learning from our experiences and making ourselves better from them.

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Hopefully tomorrow I’ll be feeling all better. Like I said, I was a little alarmed to feel this bad because I’ve had so many good days lately. I am grateful for that, and I hope to continue getting better and better.


*Those of you in the chronic illness community know we often rate our pain on a scale from 1-10, 1 being pain-free, to 10 being unbearable. It gives doctors a better way of seeing improvement and knowing how bad — or not — it really is.

I’m At An 8

This month I’ve had a very rude awakening about just how much physical therapy helps me. As someone with POTS and EDS, I have lots of chronic pain, particularly in my upper body and limbs. Whenever you go to the doctor or physical therapist, they ask if you can rate your pain scale from 1-10, 10 being completely unbearable. I’ve had very wide ranges, but the more I am able to go into the office and have hands-on work done, as well as doing my monitored strength and mobility exercises, the better I typically feel.

This article about exercising and living with EDS is well written and super-relatable. My insured PT visits ran out this month and I’ve only been a little over a week without care, but my pain levels have quickly shot up to an 8. I can’t focus on anything entirely because of how much everything hurts, and I can’t do the activities I’ve worked up to because of how much it hurts my shoulders and arms. Sleep is the only thing that relieves my pain right now, and I need to get back to my therapy sessions as soon as possible so that I don’t lose the progress I’ve worked so hard to get. It’s so frustrating living in a body that depends so heavily on doctors and working out the right way, but the thing that is the most difficult isn’t the time or effort put into all of this; rather, it’s the expense and toll this unwanted illness takes on myself and my family. I’ve always tried to remain positive and focus on the good in my life without allowing myself to dwell on the fact that it’s not fair for a young twentysomething to be sick, however it’s a lot more difficult when I feel like everything in the healthcare world is working against me. I don’t want to debate politics on this blog — ever — but one thing I do want to touch on is that I very strongly believe that people with disabilities should be cared for and given as much help as necessary to have as much of a chance at normalcy as possible. “Normal” hasn’t been attainable to me yet, but I feel blessed enough to not constantly have sharp, intense pain that I am grateful for the help I do get through physical therapy.

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In the meantime, I’m going to continue to do the best I can by doing my gentle stretches, mobility exercises, and managing the pain the best I can until January comes when I can get back in a normal routine. I have a pretty big doctor’s appointment today, and am hoping to get some relief from my pain tomorrow, so if you could say a little prayer for me that would be amazing. I’ll be back on this little corner of the Internet soon, but wanted to write a quick update about what’s been going on lately since I haven’t been great at keeping y’all updated. Love and hugs to you all.

Strong (adj.)

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.

Check Yourself, Mate.

Whoo boy am I furious. I don’t actually remember the last time I have said something like that. When was the last time I was furious? I honestly don’t even know.

So let me set the scene.

There’s a guy in the area I’ve been going out with for awhile now.* I went over to play chess with him (Seriously, what is my life? I am beginning to accept the “nerd” label my dates have bestowed upon me) and we got to revisiting some about what our relationship looks like. After telling me things like he liked that I was a wholesome and sweet girl and that he wasn’t sure he could still just be friends, I reiterated I didn’t want to date, but would respect whatever he wanted to do from that point forward. He admitted that I have been very open about my intentions and that he appreciated the honesty, but that his feelings had changed.

We then started talking more about why we work better as friends anyway, his main reason being that we don’t have a lot in common when it comes to activities — fair enough — that, in my opinion, is a great reason to not want to date someone. You need to be able to enjoy going out with one another and bonding over activities.

What he said next, though, completely caught me off guard. This is the way the conversation went:

“Well, I don’t want to sound like a douche…”

“What is it?” I asked.

“Well, I don’t want to be a jerk…”

I sat silently waiting for an explanation, as I wasn’t sure what he could be thinking.

“But maybe we should just put everything on hold until you’re better…”

I was floored.

Was he talking about my POTS? My chronic illness that he has known about for months now?  I sat on my armchair, looking at him as he casually reclined on the couch.

After processing everything he had just said, I realized that was exactly what he was talking about.

Oh. My. Gosh. You sure meant it when you said you would sound like a douche!

Honestly, I totally get it if someone doesn’t want to date me because of POTS. I do believe we all have our own flaws we bring to a relationship, but mine is more confusing than most, and I will never fault someone for wanting something simpler.

But here’s why I think this statement is unbelievably jerky.

He essentially thinks I should work my ass off and shed blood, sweat, and tears (All literally) until I am all better, and then when that day comes this guy — who left me — can have me in all of my fixed glory? Hell no. 

I stared at him blankly until I could come up with the right response to what he just said. I chose my words carefully, as I knew at this point I just wanted to leave and we had absolutely nothing to figure out.

“Okay. That makes this decision really easy now,” I said. “We’re all done here, and I’m going to get going.”

I grabbed my shoes as he said, “I think you’re really mad right now. I think I made you mad.” No shit, Sherlock.

I gathered my things in silence as I marched to the door, knowing fully I would not be coming back.

I honestly didn’t know how to react in a situation like that, but I felt like Beyonce and Taylor were cheering me on as I grabbed my things and left. I can do better than a guy who is going to tell me I’m not good enough for him right now and have the nerve to ask me to come back again later once I’m all fixed. It felt really good standing up for myself and realizing just how much I have grown. It also didn’t hurt that I had smoked him in chess in the very last game we would ever play together. 😉

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Do you agree or disagree with my opinion of what this gentleman said to me? Feel free to let me know in the comments!

*Please don’t make assumptions of who it is, as I am dating around right now.

 

Kiss & Tell

One really hilarious thing about having POTS while navigating the dating world is just the way my body reacts to things.

POTS is an autonomic nervous system disorder, meaning it affects basically everything in my body that is supposed to be an “automatic response.” For example, my body temperature is really skewy. I’ve always been pretty cold-natured, but this is to a whole new level. I found out recently, though, that having POTS just makes dating even more interesting.

I had just told a date all about my condition and after he listened closely, he leaned over to kiss me. It was a really sweet first kiss, as I felt like I had just really opened up to him, but after it was over he pulled back and had a devilish grin on his face.

I cocked my head as I looked at him inquisitively.

“I really got you hot and bothered, huh?” He asked slyly.

It took me a few seconds, but then everything clicked and I began to giggle. POTS is such a dead giveaway in situations like this! My hands were sweaty and my heart was still racing. My heart always flutters when I stand up or sit down, but it also does when I feel any sort of emotional charge — apparently kissing included. He could totally feel my pulse going a million beats per minute as I leaned up against him to continue chatting.

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Check out @muradosmann on Instagram for more great photos!

So far I’ve found guys don’t mind holding my sweaty hands or that they’re always freezing cold. POTS showcases such obvious imperfections, but I kind of love that there are people who don’t even look at those as negative things and just accept me the way I am.

Today’s lesson: You can have the best poker face in the world, but if you have an autonomic nervous system disorder you don’t stand a chance keeping your cool in the game of love.

Dealing With Depression

This post is from about a year ago, and I finally feel like I want to share it with you all. Depression isn’t something that you can see when you look at a person. I started carrying this weight towards the beginning of the end of my last relationship and as soon as my ex and I broke up I snapped out of it.

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This picture breaks my heart, as it was taken at one of the darkest points in my life, but I look so happy in it. It’s one of the most “liked” pictures on my Facebook, and shows that you really don’t always know what someone might be going through.

Depression can be a chemical imbalance in your brain, but it can also be related to crummy circumstances in your life. I feel like we don’t hear about that side as often, and I want anyone who is in a situation like mine was to know that life can and will get better.

Since the breakup I have felt like myself again. I have normal feelings, I have been happy, I have been content, and I can feel again.

I know not all of you can relate to this, but I always feel like I want to help the ones who can realize that they are absolutely not alone. I know it feels like you are, but I promise you are not alone. I will gladly be there for each and every one of you who needs someone to lean on and although I can’t get rid of the problem for you, I’m more than happy to fight with you to get your life back.

Without further ado, here is something I wrote in December 2014 right in the middle of everything:

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I never thought I would hear this about myself, but I was just diagnosed with depression.

This is a very tough pill to swallow because I have always tried my best to remain positive even in the most trying situations. First, I would like to say that I realize this is NOT MY FAULT.  So please, if you are suffering with this too, realize that nothing is wrong with you. You are not broken and you are not less of a person because of this. Depression does not define me and it does not decide who I am as a person.

I’ve had a lot to deal with the past two years. My life has been turned completely upside down and to be honest I am surprised that I didn’t have to battle this even sooner. It really just became a problem that escalated quickly in the last few months.

I’ve said to friends that although I have sometimes felt frustrated about things since getting POTS, I haven’t been depressed. I’ve told them that I feel lucky that I haven’t had to deal with that throughout my chronic illness, and that I was fairly certain that kind of thing wouldn’t happen to me. But here I am.

Depression can happen to absolutely anyone. It doesn’t mean you are weak, and it doesn’t mean that you are going to be depressing to be around. I will write more about that another day, though.

I’ve never felt as alone as I have the past couple months. Sometimes I feel like I am in a fog or just dreaming. Life feels like it is just going through the motions of daily activities that need to be done, and I don’t feel motivated to pursue my passions. I have moments of happiness, but it isn’t the way it used to be. I sometimes feel completely numb, and I sometimes just feel the most extreme kind of sad and helpless that a person can feel.

The lack of motivation might be the worst part. I can sit at home and watch TV, but I don’t really care about what’s on. I actually hate watching TV — it bores me — but I don’t want to do anything else. I have trouble feeling present.

It’s hard getting up and doing things, but I make myself because in the back of my mind I know that I want to live my life to it’s fullest. I know that deep down the normal Krista is cheering me on and pushing me to make a better life for myself, even though I don’t necessarily feel like it.

Depression is by far the hardest thing I’ve had to deal with in my life. I feel so broken, but I know that am going to come out of this even stronger than I was before. Deep down I am a fighter, and I won’t stop until I find myself again.

I just want you to know that if you are dealing with anything like this, you are not alone. I still consider myself one of the most joyful people that I know, and I will not give up until I find that girl again.

This is the first post I’ve truly felt uncomfortable sharing. I’ve gone back and forth for weeks on whether I wanted to share such an intimate and personal aspect of my life with, well, everyone.*

I think it was important to share, though. I know not everyone is as lucky as I am to have so many people supporting them through life, and I don’t ever want any of you to feel alone in dealing with something like this. If you ever want someone to talk to I would love to be that person. We are never truly alone, and I promise things can and will get better. I’m confident that this is just going to be another chapter in my life that I’ll be able to use to glorify God one day. I’m just not really sure how yet.
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*I was going to share this on Facebook about a year ago, but never did. Then when I felt better about things, I didn’t want people getting the wrong idea about who I am today and whether or not I was still depressed. I can tell you that I am in a completely different place in my life now and although I still have my chronic illness to deal with, I feel like Krista again.

In Sickness And In Health

Although I’m not an expert on many things, I would say having a chronic illness is a subject I’m pretty well versed on now. I’ve been both single and in a long-term relationship with a CI, which isn’t a super-common thing for someone in their twenties.

We never know what the future holds and sadly there is a lot of pain in this world. I could have never in a million years imagined getting a chronic illness at 22 years old, but here I am. It’s still so weird for me to think about. You don’t ever think things like this will happen to you.

Through this crazy journey life is taking me on I’ve realized the enormous difference of someone staying with you through an illness and someone supporting you. Guys, you have no idea how big this is.

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Real life with someone is very different than the glamour and attempted perfection on a wedding day. (This was from a bridal photoshoot I did a few years ago)

When someone stays with you just to be around, you feel alone. You feel like a burden, and it’s not going to help you get any better.

But when someone is there because they want to be and because they are able to put your needs above their own for a period of time, you have a significant other who is giving a genuine and selfless love — and, in turn, you can be there in their time of need.

This, to me, is one of the most beautiful things a person can offer, and it’s something that can’t be faked. Sickness still isn’t easy, but life is a heck of a lot more wonderful when you have someone who will support you when you need a shoulder to lean on. On the other hand, it’s an amazing feeling loving someone enough to want to be able to take away their pain, no matter what that may be. I’ve felt very strongly about a few people that way in my life, and it’s a very genuine and incredible feeling that I can only attribute to the selfless love I am hoping you all get from a partner.

Today’s lesson: There are amazing people in this world who will love you through your trials, whatever they may be. Don’t settle for someone who will just stay. Wait for the person who will hold your hand and be with you every step of the way, no matter where life takes you both.