You Up?

My arms are killing me right now. I am beyond exhausted, but I can’t seem to fall asleep. This can be a common problem for people with all sorts of chronic illnesses, or even just regular people with stress. My problem is that I am sometimes worn out from just living day to day life.

I don’t complain to people very much in person because complaining isn’t really my thing. I love being positive, and honestly feel like I am a lot happier when I can look at the bright side of things in life. Sometimes you just fake it till you make it, right? This can be a double-edged sword, though. It’s wonderful because I can keep my relationships light, and add more joy to both my own life and the lives of my loved ones. It’s hard, though, because I feel like the less I talk about my symptoms, the more they are just forgotten.

You can’t see when I’m dizzy or nauseous or in pain. I have said it a million times, and I’m sure I’ll keep chatting about it on here — you cannot see signs of invisible illness. If you look closely, you’ll notice the bags under my eyes have become darker and deeper the past several weeks. I look in the mirror when I take my makeup off and can tell there’s been more wear lately. You can’t see the way my arms feel ropey and knotted, or the fact that my thoracic spine is as stiff as a board, though. I went to a Nationals game a few weeks ago and thought I might faint a few times. I stood and talked candidly about my wedding plans and how I don’t know very much about baseball, but I felt the stadium spinning circles around me as I spoke. It felt like I had left my body and was being twirled around and around on an amusement park ride.

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When my POTS acts up it starts by slowly tightening everything in my chest and heating up my face, then moves to what feels like my body overheating and getting ready to shut down. In the same way that Robert’s gaming computer’s fans started whirring frantically when it was overheating, my body goes into panic mode to try to keep myself conscious by either getting into a horizontal position or rushing blood back up to my brain in any way it can. Sometimes that involves fainting to facilitate the blood flow, but luckily I have learned the signs of when I need to sit down.

Emotionally, I can feel drained with all of this. The more I write the more I expect people to understand. The less I feel understood, the more I want to scream. “I know I am the exact same person in your mind because I look normal, but how the heck would you feel if you woke up tomorrow and had to give up your job, your independence, your financial stability, and your working body?!” What frustrates me the most is how hard it is to wrap your mind around what life must be like as a young person who is sick. It kills me that I can’t go out with friends and family on long hikes, and that I don’t have the option to turn down camping just because it’s too hot out and I don’t feel like getting sweaty. I miss running, I miss going out dancing until the wee hours of the morning, and I miss competing. I absolutely hate not being able to compete in any kind of sport anymore, which is why I have opted for being a cutthroat board game player instead. It often doesn’t feel fair that other twenty-somethings take their bodies for granted or understand just how lucky they are to go to work every day and walk around pain-free.

I will keep writing because I want so badly for you to understand. I want you to love your own body fiercely for the things it can do, and I want you to realize that just because I am not playing volleyball or tagging along on your wilderness hikes doesn’t mean I don’t want to — it just means I either physically can’t, or it’s not worth how many days I know I will pay for the fun after the fact. I remember when I graduated from college and a friend began having severe chronic pain. I felt terrible for her, but I also didn’t get that her life would be changed forever with her new fibromyalgia diagnosis. It’s easy to move on with your day and forget about how other people are feeling when you don’t understand their journey, but it becomes a whole new ballgame when you meet someone who is struggling with something that you have already been through. Next week I am going to talk some about empathy versus sympathy. I have learned how to be empathetic to others the hard way, but I also think it is one of the most beautiful characteristics I own now. You don’t always have to walk a mile in someone else’s shoes for your heart to really understand what they are going through.

Full

First, I would like to start this blog post by saying “Hoppy Easter.” Macy is sitting in my lap right now and wanted me to include a cute animal pun.

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The change in weather in the DC area has been crazy lately. This is a huge annoyance because it’s made me more symptomatic. Fall has become my favorite season since the temperatures are typically pretty mild, and there doesn’t seem to be as much rain as there is in the springtime.

This summer will be my 5 year anniversary with POTS. Did you know that a 50 year anniversary is called a “golden anniversary?” I guess you’re typically supposed to get your significant other something made out of gold. My brain is a funny thing and works really quickly jumping from one subject to the next, so I somehow got to thinking about that and wondering if a 5 year anniversary had a name. After a quick meeting with Google, I found that silverware is the token gift for 5 years. I couldn’t help but grin since I often feel like I don’t have enough spoons throughout the week. This is a kind of cruel irony.

One of the hardest things about having a chronic illness is just the simple fact that life is more drastically unpredictable than the average human’s. You often hear someone with a chronic condition say that they are having a “good day” or a “bad day,” but either way it will pass and there will be another kind lined up and ready to take its place. POTS has taught me to really enjoy moments, especially when I get to do something out of the ordinary that might cause a lot of joy — and bring with it a lot of pain the next day.

I write about pain a lot more than I ever talk about it because I do want to enjoy my life and have the little moments that make life so beautiful. Regardless of feeling crappy right now, I want to remember that four years ago my life was being lived horizontally. I do feel really blessed that I can walk, sit upright, and enjoy so many amazing things that I do take for granted. A few years ago I couldn’t stand more than a minute at a time without fainting, and the only time I really left home was to go to the doctors office or to the gym for my daily recumbent bike routine.  The thing I find most interesting about this is that I have really fond memories even from way back then. The amazing part of being an optimist and looking at the glass half full is that I do remember how shitty I felt, but it isn’t at the forefront of my mind when I think about being 23 years old. I think about watching Top Chef with my mom and dreaming about being able to cook again one day. I remember making “Dunkaroos” with Goldfish and salt because I couldn’t figure out another way to eat enough, and I remember close friends coming over and sitting on the couch with me and telling me stories about what their life is like post college. I remember sitting with my passenger seat reclined as my dad drove me two miles down the road to do my gym workout, and the stories we would tell each other back and forth. I remember him telling me I would get better one day, and my mom playing “Would You Rather” with me when I couldn’t sleep at night. I still have the memory of lying down in the middle of the movie theater floor so I wouldn’t pass out while waiting in line for popcorn with friends, but I don’t remember the extreme nausea and dizziness from that episode anymore. Now it’s a kind of funny memory, and I wonder how there was a time I didn’t feel embarrassed to be the center of attention for something so out of the ordinary. In fact, I feel lucky that I get embarrassed about POTS things now. This means I am healing and major health complications are not a regular part of my day.

Tonight I am stiff, sore, and ready for sleep. My shoulders hurt from a long week and I am ready for the pain to subside so I can get a good night’s sleep. Instead of remembering this feeling a year from now, though, I know that I am going to remember what it was like going out on a fun double date and reminiscing through old college memories, rather than how badly my shoulders hurt or how tired I am of “working to get better.” I know that one day I will be a lot more normal because I am still making improvements, even if they sometimes feel small.

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I don’t know whether looking at the glass half full is something you’re born with, or an outlook you develop, but I am so thankful that I have that ability in my life. I know sometimes it can be easy to feel frustrated or wonder why you got the short end of the stick in one way or another, but the way I see it is if a glass is half empty, it is because you enjoyed something from it, so there is something to be joyful for. Glasses are things that are meant to be filled and emptied, kind of in the same way that life sometimes has its ups and downs. We may not have the ability to control everything that happens in our lives, but we can learn to control our outlook, which is actually one of the most incredible and worthwhile things a person can do. Life isn’t always easy or fun, but there is always something to be joyful for — you just have to learn how to look for it.

“I Can’t Wait Until Tomorrow”

How many times have you heard someone utter the words, “I can’t wait until tomorrow,” “I can’t wait until Friday,” or “I hate Mondays?” I find myself saying this on days I feel sick, lonely, or even just bored.

Somehow the future is always more bright, beautiful, and easier than today. Nobody warned us that there would still be trials, loss, and unplanned twists and turns where you least expect them. That being said, why do we still always hope for tomorrow to come, even when we have so many blessings today? I think a big part of it has to do with boredom. It’s hard to sit still and have a mundane schedule and so much easier to “live for today” when today is exciting and great.

Getting sick with POTS really opened my eyes to the harder parts of life. One of the most difficult lessons I’ve learned is that the future isn’t promised, and some dreams may never come true. You know what else I learned from these lessons, though? That this is all okay! I learned that you have the opportunity to grow and learn from trials, and that you can always handle so much more than you realize. I learned that sometimes the hardest thing you have to go through can turn into the biggest blessing you’ve ever had, and that God’s plan for you is even better than what you have planned for yourself. Finally, I learned that sometimes all you can do is take life one day at a time, and focusing too much on the future can actually be harmful when you are dealing with a particularly difficult trial.

Instead, on the harder days I try my best to list my blessings. If you follow me on Instagram, you’ve surely seen my “Five Blessings” posts. This was the most recent one:

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Instead of having the mindset that life is going to be better tomorrow, count the blessings you have today. Don’t get me wrong; it can be really hard sometimes, but if you can find even just one thing to be grateful for, life quickly feels a little bit easier. Sometimes you need to just take baby steps, even if it’s just counting your blessings — one day at a time.


Update: Still trying to change my domain to KristaLauren.com, but it’s taking forever because I need technical help and it hasn’t been the biggest priority on my list. Keep in mind this site will be changing, though!

My Heart Is Deployed

My friends who know Robert know he’s not crazy active on social media; he definitely doesn’t have a blog I can go to and read about all of his thoughts and feelings when I miss him (And in a lot of ways I’m glad there aren’t two of us who pour our hearts out to the world — that might just be a little much in one relationship, ha!).

I was missing him a little more than usual last night and did what any millennial would — I went to his Facebook page to feel like I had some sort of connection with him while he was away at work. We don’t get to talk a ton except during my mornings or afternoons, so nighttime is a particularly difficult time for me.

I smiled at the pictures I’ve come to know so well, and teared up at the one of us the day before we had to say goodbye. Then I saw something really strange on his page. He had written a Facebook status on Thanksgiving expressing gratitude towards his friends, family, and coworkers, but included this little line in the middle of it:

“I can’t believe the holiday season is here… It was over 8 months ago that I left Virginia, but the time has gone by quickly.”

What. The. Heck?!?!

IN WHAT WORLD HAS TIME GONE BY QUICKLY?!

I flash back to February when we said “goodbye” to our weekend visits. I barely even remember what it’s like to see someone outside my family that regularly.

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My best friend Audrey, once again, took this photo soon after Robert left for his deployment. It was so great to find this sign randomly at one of our photoshoots.

Then I think back to March and saying goodbye in Richmond. Okay, I’ll give him that, the emotions are still raw from watching him leave at 4:30 in the morning. I still can’t go back to that day without feeling really torn up about it. I am certain deep down to my core that the day we said goodbye in Richmond is exactly what leaving for a deployment is supposed to feel like. I remember walking him out to the bus, holding his hand and feeling tears dance right behind my eyes, but holding them in as best as I possibly could until I was able to run back into the lobby and break down. I remember feeling the way Kim Kardashian must when she does her signature “ugly cry” in front of everyone in the hotel lobby. When the man at the front desk asked if I was okay and came over to try to help me feel better, he put his hand on my shoulder and had a look of pity in his eyes I didn’t recognize because I hadn’t ever earned it before. This was the first time I showed that much of myself to a stranger. I remember the feeling in the pit of my stomach when I realized in that moment that was now one of the people I had always felt bad for in the past. I was someone who had to watch a loved one leave to serve for my country, and I had someone to worry about for the next ten months.

I think back to Baltimore in April and the two precious days we had together after we thought we wouldn’t see each other again until January or February. I remember that day so well too, but it feels so long ago.

As does the first week of him being gone and the many little moments I’ve collected along the way where I’ve tried my hardest to muster up just enough strength to keep pressing forward, even when I feel like my heart might not be able to handle another day of everything a deployment has to offer. Missing him often feels kind of the same day-to-day, but I can think back to several particularly difficult moments. Pulling my car to the side of the road to cry, attending weddings and events as the only couple-less one of our group, and spending  many chilly fall evenings in my PJs by myself wishing I had a snuggle buddy to name just a few.

Time is such a funny thing, and though it’s seemed very different to each of us, we both have experienced the exact same amount of time apart. We’ve also been blessed to spend the same amount with each other; it just somehow never feels like enough to me.

I’m hoping we’ll get lots of time together when he’s back. Time is easily the most valuable thing I own, and I love spending it on the people I care about most in life. I may hate deployments, but I absolutely love my soldier.

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This is a picture of Robert meeting Governor Terry McAuliffe at his departure ceremony.

9 Months Without Sleep

3:46 AM. The harshly lit number blinded me from the iPhone sitting on my bedside table.

Another nightmare about the Army. I don’t want to think about it; I don’t want to worry anymore. I hate that someone I love is overseas and isn’t ever really safe.

My eyes water. I’m not sure if it’s from the bright light or my heart hurting. It doesn’t matter; I power through both and pick my phone up and begin to scroll. Anything to take my mind off worrying. There’s no way I can sleep after something shaking me up so much.

Instagram.

The last photo I posted was one of us. Missing my soldier. #deployedlove #ldr #ArmyStrong

My finger slips onto the first hashtag. I didn’t mean to click it, but now that I have I can’t stop scrolling. Tears start rolling down my cheek. There are thousands of couples reuniting with loved ones. Thousands more are just beginning their deployment journey. I’m not sure who my heart goes out to more — the people who just started the deployment or the people who are several months into it. The first couples are lucky because they have seen each other so recently, but they have a lot longer to go until they see one another again. The beginning of a deployment is really awful, sure, but the middle months are almost the worst. Time goes by slowly, and it gets to the point where it feels like forever ago you last held your loved one, but it also seems like it will take a lifetime to see them again. Both are hard. Deployments are a hard beast to fight.

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This was my favorite post on Instagram, and they had a video that made me SO happy. Check out @sadiebreann on Instagram to watch their beautiful reunion!

I close the Instagram app before I can think about it any longer.

Facebook. 

Puppies, like. Girls’ night out, like. Tiramisu, like.

It suddenly occurs to me that it’s insanely creepy to be “liking” photos at four in the morning. After all, my Facebook friends don’t know that I am at home trying to think of anything but him right now.

There’s a photo of a girl I vaguely know. She is sad because her boyfriend is out of town for the weekend. My face feels warm, and eyes fill once again.

I remember when I was in a previous long distance relationship and felt frustrated when friends would complain about not seeing their SO for a few weeks. That always tugged at my heart a bit, but talk about a new perspective with the military. I want to simultaneously tell the girl how lucky she is to have a boyfriend with a normal job and how short a weekend really is. I immediately feel guilty for minimizing this girl’s post. I don’t know what’s going on in her life; I don’t have any right to be judgmental.

Facebook isn’t helping either. I am clearly projecting my own feelings onto everyone except the puppies.

I close the app and then my eyes. I hope to drift back to sleep, but know it’s not in the cards for me yet. I can’t stop thinking about him. I wonder how long 4 months feels. I have been on the planet for 25 years now and can’t figure out what sixteen weeks feels like. I’ve done sixteen weeks 77 times, but the time frame suddenly feels so foreign. I can’t do 4 more months, I whimper to myself.

One thing I’ve learned to do when I feel helpless is list my options. Even if they suck, you almost always have some sort of choice in life.

Option 1: Break up with him. Nope, that’s definitely not what I want to do. This is hard, but I am more than halfway done and he’s incredibly special. Not even a realistic option.

Option 2: Stick it out. That’s all I can do. I want him home, but I can’t bring him here, that’s not on the table, so I’ll have to keep pushing toward the future I am so excited about.

I don’t feel any better, even though I had hoped that I would by tricking myself into thinking I was more in control of a tough situation than I actually am.

The darkness feels claustrophobic. I blind myself with my phone once again and click the big red YouTube logo. Cheery videos slowly fade into the darkness as the white noise begins to blend with my thoughts.

I finally drift back to sleep… 4:55 AM.

Feature Friday: In Sickness And In Health

This week’s feature is about my dear friends Danielle and Pat. They have been married for just over three years now and known each other since high school. For as long as I’ve known Pat and Danielle they’ve been a package deal. They have many of the same friends, love spending time with their extended family members, and even work for the same company. One thing I really love about their relationship is how they both look out for one another and take turns leaning on each other.

I asked Pat if he’d like to do a feature about his beautiful wife to surprise her, and he was quick to oblige. Talking to Pat about Danielle made me tear up when I saw the clear adoration he had for her. Here is their story about how special marriage can be and getting through hardships together once you’ve committed your life to someone.

Pat and Danielle got married in April, 2013. They had a beautiful outdoor wedding in the Virginia countryside with their closest friends and family, then honeymooned on a cruise ship and traveled to a handful of tropical islands to celebrate their marriage.

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Six short months after their wedding their fairytale came to a hard stop. Danielle woke up with intense chronic pain and after weeks of testing learned that she had something called fibromyalgia. Neither she nor Pat had heard of the illness, but he quickly began researching everything from different doctors to take her to and dietary changes that might help manage the pain. He kept his full-time job and took on a new one — fighting fibromyalgia with his wife. They made all of the lifestyle changes together to make things as easy on Danielle as they could possibly be in such a tough situation. They ate all of the same meals, worked out at the gym together, and went to her appointments hand in hand. He told me,

“Marriage isn’t about the husband and wife as individuals. Everything you do, you do together.”

Pat knew Danielle was in constant pain and felt helpless. He couldn’t do anything to fix the woman he loved and vowed to care for. He said that he would take all of the pain and exhaustion in a heartbeat if it meant Danielle would be better — this, friends, is the definition of selfless love.

“The most difficult part is not being able to do anything about her illness. There is no tangible ‘thing’ to go after and treat, as it is an illness diagnosed purely based on symptoms. It gets exhausting when you see doctor after doctor who are all blindly chasing after ten different symptoms and prescribing ten different kinds of medications which all have their fair share of side effects. You feel defeated. The fact that I can’t fix this for her is the hardest thing I’ve had to come to terms with.”

I was surprised to learn that fibromyalgia hasn’t really changed their relationship. Pat told me that the only major difference is that he has become more in tune with how Danielle is feeling and when she might have to take it a little easier one day. They also somtimes have to cancel plans on friends and can’t go out as much, but they’ve learned to adapt to this new lifestyle by enjoying one another’s company in the comfort of their own home. Thier favorite activities include snuggling with their Boxer Bentley, watching movies together, or relaxing outside by the lake. It isn’t a typical life of a twentysomething, but they are truly, genuinely happy together.

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“You’ll have to excuse my language, but Danielle in my mind is THE most badass woman I know. I don’t know anyone who can have their world turned upside down and make such a remarkable recovery. She is one of the most headstrong people I have ever met. Any time we found a new way fibromyalgia was trying to put a damper on our life plans, that woman would stick the proverbial middle finger to it and just truck along. As a husband watching your wife kick ass and take names is the most humbling and honoring experience. Whenever I have something go wrong in my life I look to her and remember how much work she has done and how far she has come — it reminds me to stay grounded. It reminds me that no matter how hard life gets or how hard you think your life is, in the end it really isn’t that bad.”

Anytime Pat talks about Danielle you can tell how much he loves her by the smile on his face. It makes me happy to know that these two wonderful people met each other, fell in love, and made their relationship work — through thick and thin.

I don’t think there is a word that exists to describe my feelings for my wife. She has been there for me and with me through my darkest of days and has been there through my brightest. She has corrected me when I was wrong, and accepted me when I was right. She is my best friend. She knows everything about me, and I her. We keep each other’s darkest secrets and share our greatest triumphs. This woman is the quintessential definition of a perfect wife, a perfect partner and a perfect friend. I never knew I could love someone as much as I love Danielle. I just hope that other people find the kind of love to where you sacrifice everything you are to your spouse.”