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.

typewriter.png

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.

How To Fill A Love Tank

The more I’ve loved, been loved, and felt broken, the more I’ve learned about the five different love languages and how important they really are. I’ve always known I’m an in-between and don’t have a primary LL, but over the years I’ve noticed that I need at least a pinch of each to make my love tank feel full. The more love that comes in and warms my heart, the more love I feel like I have to give away.

I need words of affirmation to feel like I mean something to other people. Whether it’s telling me that the words on this site matter or that my company is a joy, words of affirmation are currently tied for the lead of what I need coming into my heart. They’re also headlining what I strive to give every day. I’ve always been a big fan of pen and paper, and I write notes for even the newest of friends. I don’t think there will ever be a time in my life where I don’t write to those I love, and if there is, please come find me to make sure I’m okay.

At our wedding, I decided to write each and every one of my girl friends a letter telling them how much they mean to me and how happy I was they could share that day with me. It took hours of work to finish the pile of notes you see at the top of this picture, but every single one of the girls who came to support us means the world to me, and I wanted to remind them that. I wrote most of my notes well ahead of time — before I even knew what color I wanted our bridesmaid dresses to be, what vendor we’d use for flowers, or what flavor we wanted our cake to be. As with several other things I had imagined, I didn’t actually have the time to put these around at all the tables the day of the wedding, so I’m still slowly handing out the notes, but this was one of the top things I was excited about while planning our wedding.

writing 1.JPG
Photo Credit: Katie Nesbitt Photography

Physical touch has also been an important part of my life, and having a hand to hold or body to hug is really vital for my heart to feel cared for. It is tied as my most important love language right now. I don’t talk very much about my pain with even my closest friends and family, but I’ve felt like I’ve needed more hugs lately. Something about someone giving you a squeeze makes the world feel like it’s going to be alright, even when you feel like nobody could possibly understand how you feel. For just a moment I forget about anything that is hurting or bothering me and remember how much love I have in my life.

Gift giving used to be my top LL. Even as a kid I loved going to the store to buy presents for birthday parties, Christmas, and even small “just because” gifts with my allowance. I think I learned this language of love from my mom because she was so great at leaving little notes and stuffed animals on my pillow or under the covers for me to find when I crawled into bed at night. This practice carried on into college, which was where I reached far and wide to friends for birthdays and almost every single holiday in an attempt to make people around me feel special and cared for. I spent hours shopping for goody bags to make every Valentine’s Day because I wanted other people to love the holiday as much as I did, even if they were single like I often was. I bought chocolates, cards, nail polish, giant bags of pink and red confetti hearts, and topped the presents off with a mix CD made special for each friend. It’s funny to this day how many people tell me they remember my goofy little playlists. Gift giving is something I find really fun and I think most people feel pretty loved when they get a present that was chosen just for them. It isn’t about the thing, rather it’s the fact that someone spent the time and energy to think about you and do something about it that makes this LL special.

We have two more love languages left. Quality time, and acts of service.

Quality time will always be important to me, but I’ve learned just how necessary the beautiful, magical adjective “quality” is. Time, though a really valuable thing to give someone, is only special if it’s attentive and caring. Electronics make it worlds more difficult to get quality time, and a lot easier to give the excuse that you’ve filled this part of the tank in a friend, family member, or partner. I feel tired a lot and am guilty of plopping down on the couch, only to turn on a repeat episode of Friends or the newest Judge Judy case. Although that time can be spent bonding and laughing over the silliness that ensues, it only fills the “quality time tank” so much. The amount this fills for me lingers around the 15% line, because with a big black box in front of my face, there is only so much I am going to learn and connect with someone else.

Quality time is perhaps the most difficult of the love languages to manage because it does depend heavily on the activity and how present each person is with one another. To one — perhaps with physical touch as the highest of the love languages — snuggling up on the couch and catching a game might be something that really fills up their tank. To another person, however, with words of affirmation being important, talking has to be a larger part of the time spent together to actually be quality enough to fill the tank. Hallmark Christmas movies make me feel more connected to another person than anything else on television because I tend to talk through them and bond over how many errors the producers missed or storylines that don’t make sense.

Finally, acts of service. I tend to write about this love language last, because I understand it the least. This is arguably one of the most practical languages that I absolutely need, but it just doesn’t fill me up the way the other four do. It doesn’t give me a warm and fuzzy feeling or make my heart leap from my ribcage the way everything else seems to. I need this love language desperately, though, to keep my health maintained and feeling good. Mentally I notice all of the acts of service that are performed for me every day and I feel thankful for them, but they don’t offer the same powerful effect that a hug, love letter, or tasty dessert brought from my favorite bakery do. It registers to me that this is love, but it doesn’t fill my heart the way other languages do.

I encourage my friends and family to keep learning about their love languages, as well as their partner’s, family’s, and friends’. I talk about them so much on here because I truly believe knowing more about the five love languages is a fantastic base of any relationship, and they can drastically change how loved a person feels. It really is interesting how all of the languages work together and how much easier it is to love someone when you truly understand them. The most complicated thing about relationships is that none of us are the exact same, and we all need different things to make us feel content and secure at the end of the day. People are dynamic and what they need might change as they grow, so loving someone is a never-ending task. Love is the most worthwhile thing in the world, though, and means so much more when you’ve worked to make it more special.


Do you have any book suggestions for me to read? I’m always plugging The 5 Love Languages by Gary Chapman, so it would be great to hear what y’all enjoy too!

Do You Believe In Magic?

Something about the Christmas season is just so beautiful. It’s a time for love, joy, patience, and family.

The past few years I haven’t been in the Christmas spirit as much. It’s always been tied with Valentine’s Day for my favorite holiday, but I think I just Christmassed myself out after years of starting to listen to the tunes the day after Halloween and jumping into the season a little too early. I always love spending the day with my family, but leading up to it just hasn’t been as thrilling as it usually is for a few years. My family and I have little traditions I’ve looked forward to — like driving around our neighborhood and looking at lights and going to the Japanese steakhouse for hibachi on Christmas Eve — but I haven’t been going nuts about the holiday for more than a month in advance like I usually would.

bright.png

This year I’m really excited about all the beauty Christmas has to offer. I’m excited to see all the beautiful lights and decorations, I’ve found some Christmas albums I’m not tired of, and I want to do lots of little acts of kindness this season.

I started my shopping early this year and have already found gifts for several of my friends and family. We are going to New York City soon, and I am just dying to go to Rockefeller Center to see the Christmas tree and ice arena. I haven’t ever been to the Top of the Rock, but I hear the views are spectacular, and arguably the best in Manhattan. I want to go to Macy’s to see the Christmas displays in the windows, and I want to visit the new cafe to see what it’s really like having Breakfast at Tiffany’s.

This season I want to build gingerbread houses, bake cookies for people who have touched my life in one way or another, and drive around looking at lights at least twice a week. I am going to drink lots of peppermint hot chocolate, sit in front of the fire with cozy wool socks and my puppy, and watch as many Hallmark Christmas movies as I can handle. I feel like my list is getting incredibly ambitious, but I think we need to celebrate the things that make us excited in this life. Christmas is a time of the year we can really feel the magic of other people, and despite hating the cold, I always have a warm heart this time of year.


What makes you the most excited about the season? What are more fun things I can add to my list? What should I do to give more this holiday? I would love to hear some ideas in the comments!

Give A Piece Of Your Heart To Someone

I’m always seeing little graphics that say, “tag someone who needs to hear this,” or, “tag a friend to let them know you’re there for them,” on Facebook and Instagram. While the person who created the thread means well, as do the friends who write, “@insert_name_here” in the comments, that just doesn’t cut it for letting your loved ones know you care about them.

November is a month for thankfulness, so the next few weeks I’d love to challenge you to write love letters to friends and family you care about. A letter is one of the most intimate and personal things you can offer someone; you are giving a piece of your heart and spilling out your feelings on a permanent page.

Is letter writing not really your thing? Then I encourage you even more to sit down at your desk and write a few letters. Often some of the most beautiful notes I get are from people who have scribbly handwriting or don’t use the most eloquent adjectives available in the English language. I realize that these letters are truly written from the heart, and that someone was sitting and thinking about me for an uninterrupted amount of time while they put pen to paper.

If you don’t quite know where to start, some of the subjects you can touch on are why you love the person you are writing to, how they have made an impact on your life, and what they do that you happen to think is incredibly amazing about them. You love them for a reason, and all you have to do is write that down so they can see that and cherish it forever. If nothing else, I challenge you to write three letters in the rest of November. Then, see who really appreciates the note, and make a habit of sending one letter every month. It only takes a few minutes, but is a gesture that can mean the world to someone.

Screen Shot 2017-11-08 at 11.15.22 AM.png

Bonus: Write a letter to sweet little Jacob. You can count this toward your three for the month, and I promise this will be an effort that won’t be in vain. As someone who saves special letters from readers and loved ones, this gesture means more than you could imagine.

Pup Cups & PT

I’ve been a little MIA on this blog lately for a few reasons. First, because we have a new puppy in the family, and Jax has kept us all incredibly busy… Which also means I’m trying to spend more quality time with my sweet little Macy so she feels included!

Screen Shot 2017-06-26 at 8.38.27 PM.png
I’m making sure Jax knows how important snuggle time is.
Screen Shot 2017-06-26 at 8.38.54 PM.png
Robert and I took him to the farm for his first swim last week… He had a blast!
Screen Shot 2017-06-26 at 8.41.42 PM.png
After that, Robert took Macy and I out on an ice cream date so that she could feel special too!

Second, I’ve been working on a few little projects that I’ll be ready to announce on here this fall. Nothing too crazy, but you’ll see why my time has been occupied and a bit away from blogging. I’ve also still been dealing with my arm pain, so physical therapy and my exercises take up a lot of energy.

Third, I’ve been focusing on building a team of other young women for my Rodan + Fields business. It’s been a blast getting coffee and lunch with friends and discussing how they fit in to my new small business. I’ve been so thrilled with all the support friends and family have shown already, and am so excited to keep adding to my team.

Lastly, I’ve still been catching up on spending time with Robert. Ten months was a really long time to be gone, and even though he’s only been home for five months it’s felt like we’ve packed a lot of quality time in together. We’ve gone to a few weddings together, watched a bunch of summer movies, and enjoy cooking out and relaxing at his new home. Time is the most valuable thing I have on this earth, and I’m so happy to be able to spend it on him and my loved ones. Life is such a beautiful thing, and I’m blessed to have so many great people in mine.

Screen Shot 2017-06-26 at 9.02.16 PM.png

Your Least Important Love Language Is Still A Big Deal

I am currently taking the time to re-read Gary Chapman’s bestselling book, The 5 Love Languages. Whether you are single, in a relationship, married, or divorced I could not recommend this book enough, as it is all about how you can love the important people in your life in a way that is meaningful to them.

love book.png

“Gift giving” has always been one of my primary love languages, as I really enjoy taking the time to give people things that I know will make them happy, and it makes me feel really special when someone picks out something small just for me. Since I started dating Robert, though, I have noticed that “quality time” has become my top love language. I think a lot of that has to do with the fact that we did a deployment together and I wouldn’t trade time with him for anything.

Physical touch is tied with gift giving at my second greatest love language, and words of affirmation are right after that. Acts of service come in last with a measly 1 point. Instead of focusing on my greatest love languages, though, today I want to focus on my least — acts of service.

I think it’s so important to take this quiz and know what your most important — and least important — love languages are because they help you learn how to love the people around you even better. Something I realized when I took this quiz and saw how low “acts of service” is in my heart is that I don’t necessarily take note of the love in people’s actions when they perform an act of service for me. Having a chronic illness has really made a lot of my friends and family step up to try and make my life easier. Friends come pick me up at my house to go out for dessert (A few even drive over an hour one way to meet up with me on a regular basis!), carry my purse for me when we go out, and my parents drive me to countless doctors appointments with no complaints. These are all ways people are showing me that they love me through their actions.

I always really appreciate when loved ones take time out of their day to do these things for me, and I often feel bad that I can be such a big inconvenience. I haven’t ever thought of this as their way to show love to me, though. In the past I haven’t taken note of these actions as ways to love; I’ve just thought they were people merely being “nice” to me since I have a physical disability. From now on instead of feeling incredibly awkward that I am causing a problem for someone else, I am going to take a moment to realize that this is their way of showing me that they love and care about me.

I encourage you to find out what your most important love language is because you will be able to better articulate to your friends and significant other what makes you feel loved, however I think we should all go a step further and pay closer attention to the ways people give us the love we feel least connected to. Ever since I have decided to be more aware of the ways people give love to me I have actually felt more surrounded by love than I ever have before. Paying close attention to the little things people do for me every day has made me realize that utilizing your least important love language can still make you feel incredibly loved and will sometimes be the way people you care about will choose to love you.

Screen Shot 2017-03-30 at 10.25.27 PM.png
Macy lives to serve and does a great job making me feel loved each and every day. Here she is, prompting me to keep reading!

The Most Difficult Part About Forgiveness

One of the hardest things in the world is learning how to forgive yourself. At least for me it is.

You know when people proclaim, “I live with no regrets!” and you nod and are like, “Yeah, what this person is saying is so wise and great. I don’t regret anything I’ve ever done either. Ever.”

When I sit back and really think about it, though, I do have regrets in life. I have regrets that make me sick to my stomach and keep me up at night. I can easily forgive myself for any kind of mistakes I’ve made that affect my own life but when it comes to bringing my loved ones into the picture I have a really hard time cutting myself any sort of slack. I want the very best for the people I love, and I would do anything to make them happy. I kick myself whenever I do anything that hurts them, and would take any and every sort of pain life has to offer away from those I care about in an instant. Whenever I see someone I love hurting I wish my superpower could be taking pain away from others and giving it to myself instead. Even after knowing Robert only for a short time I knew with all my heart that I was glad I was sick instead of him. I know illness isn’t a realistic “Either/or” scenario, but I think about sickness a lot and am always relieved that I am the one with health problems, rather than someone I care about. Even after we had only been dating a few months I remember feeling like I wanted to be the one to protect his heart, and that I would do anything for this new, special person in my life — the exact same way I feel about my closest friends and entire family.

storm.png
Something I used to think about a lot was how I got POTS. Doctors haven’t been able to pinpoint a cause yet, as POTS has really only been studied since 1993 or so, and they need more information on it. One theory is that people can get sick with POTS after a traumatic event. My “event” happened to be a boy, and very constantly and consistently being stressed and weighed down in a relationship.

I would be lying if I said I didn’t regret worrying so much about someone who would later not even be a part of my life. In fact, I didn’t know it then, but I would later feel like I didn’t even know what real, deep, true love was until I found it for the first time in the passenger seat of a Ford pickup truck.

I have other regrets, though, that haunt me far more than my illness.

In the same relationship I didn’t stay true to myself — in a lot of ways. I gave up pieces of myself I held near and dear to my heart, all in hopes to avoid ever having to go through any sort of heartbreak. I didn’t think that I was strong enough to handle a breakup, and decided that all the pain my heart was feeling must just be “normal” in a relationship. I thought that love was supposed to hurt, and that men just didn’t care as much about having their partner be a part of their everyday life as women did. I thought that I must be crazy, clingy, and unreasonable for wanting a boyfriend who would be a significant part of my life. I thought the jitters I felt in my heart and stomach were butterflies, when they were really just anxiety. Little did I know way back then that I was already in the middle of a terrible heartbreak — one where I was losing myself completely.

There are things I changed in that relationship that I will never be able to get back. I wish with all my heart I could rewind time and do everything over again so I wouldn’t make the mistakes that I did, but clearly that’s impossible. My next-best tactic will have to be learning to forgive myself.

If I knew then what I do now, I would have ended things and stayed single for a few years until I met the person who would completely turn the way I felt about love upside down. I would have known that I wasn’t being treated right, that people should never pressure you to do anything you aren’t comfortable with, and I would have known that there are men who care about my heart so much that they will be able to put aside some of their own dreams for mine too.

signpoint


My heart still hurts often because of mistakes I can’t take back and the way they affect those I love. Sometimes I worry that I won’t ever be able to be fully loved by someone for forever with the baggage from my past.



Love is patient, love is kind.

This verse often plays in my head when I hear the word “love,” but something told me to dig deeper today. I Google “1 Corinthians 13,” as I don’t know the Bible well enough to recite the entire verse to myself verbatim. I skim until a small collection of words hit me and my heart drops into my stomach.

“LOVE KEEPS NO RECORD OF WRONGS.”

I want to cry with relief.

God is speaking to me in a way I’ve never really felt before. I know Jesus came to this earth to die for my sins, and I know He forgives me, but for the first time in a long time I feel like I can forgive myself. I realize a real, true love can caress me gently and understand that just because I am scarred and imperfect doesn’t mean I am not worthy. Just because I made mistakes that really hurt in my past doesn’t mean my future can’t still be bright, healthy, and filled with the authentic love I have always wanted. Even though I can’t make everything right with the mistakes I have made in my life, I can look forward to creating a beautiful life with someone really special. The best thing I can do now is move on with my life and continue to look towards the bright future I have with someone who will be my forever and always, rather than dwell on the things that used to hurt me and tear me down. After all, at the end of the day it doesn’t really matter who you have been with. All that matters is who you end up with.

future


Dysautonomia International does not believe POTS is caused by stress or anxiety, so odds are it is not. Stress does very negatively affect the way I feel, though, which is why I now try to keep my life as stress-free as it can be.