The Ugly.

I wrote the below post about a week or so ago in absolute devastation. I didn't want to post it because I feel the need for this to be some ridiculous inspirational blog in which I am always a super badass woman who defeats chronic illness in a single bound. But that's not realistic or honest. Some days it defeats me...and for this to be a true picture of my life and a journey for me to look back on, I have to remember the good, the bad, and the ugly. And this my friends is ugly.

Two days ago I unexpectedly had to stand for an hour in a patient's room - and today, 3 days later I am still paying for it. Most of you likely hear that and think an hour is not that big of a deal, and part of why I was so mad was because I felt that way too. I'm in my 20s, and after I left that room and went back to my office, almost falling the whole way because my legs were numb, and just lost my mind. Thankfully, I had the office to myself. It was ugly. I wish I could adequately paint this picture for you, but I was full on drowning in the throes of despair. I was sobbing uncontrollably, hyperventilating to the point of almost fainting and uncontrollable in all regards. I was in the second most pain I've ever been in during my lifetime - which is saying something. I was angrily venting to my 2 people and yelling at God, begging for an answer. And the end result? Life isn't fair. This situation isn't fair. I had just come from a patient's room after trying to help her, and she knowingly was throwing away a chance at being better. A chance that 2 minutes later I was at the end of my rope begging for. She'll never know the sacrifice it took for me to stand with her for that hour. She didn't understand why the next day I came to her in a wheelchair. She'll never know the battles I face. And I realize if I want to truly bring awareness to chronic illnesses and my daily life, I need to show that we're not always on top. We feel burdened sometimes by the pressure of society to be an inspiration. There are some days when our illness does defeat us. And sometimes that's okay. It's okay for me to be mad, angry, frustrated and lose my mind for a minute if it means I can take a breath. It's okay if I'm tired from being knocked down. And it's okay to tell you about it....as much as I try to paint a pretty picture of overcoming my life - sometimes I don't.

You don't see these meltdowns.
You don't see my house littered with mobility aids.
You don't see the quiet moments I have with my husband when there's nothing left to say.
You don't hear the incessant thoughts telling me I'm right to think I'm useless and a piece of trash.
You don't hear the would be conversations I want to have with the woman who caused this.
You don't see the tears I shed for having to cancel a night out because I literally can't stand up.
You don't see the dirty. And how much I sacrifice so you don't. But it's there.

-------------------------------------------------------------------------------------------------------------------------
A handful of you know that for the past two weeks I have been going through an experimental treatment to deal with my pain by getting ketamine infusions. Ketamine is well known in the medical world for being a popular anesthetic used for surgeries, and is quickly becoming well known for it's successes off-label for chronic pain, and now being studied for it's effects on depression.

Here I am at a pivotal decision that I have faced too many times to count in my life: do I roll the dice and gamble on a chance at something working? What if it doesn't work? Defeat and heartache. Loss of money and time. But potentially even scarier: what if it does? I don't know what a life without pain feels like. How would that change my life? Would it change who I am?

I literally can't count the number of medications, procedures, and treatments I have tried to alleviate or at least minimize my pain; none of them to any significant effect. And now, after two weeks of having my life completely turned upside down in a not so pleasant, daily life altering treatment I am yet again on the losing side. Absolute devastation and heartbreak don't even touch how I feel. There's not a big enough word for it, I don't think. So much hope and faith is put into another chance, only to have it dashed away. I researched for hours and talked to others who have successfully had the treatment. The odds were in my favor. Yet here I am again, in too much pain to focus on anything else and sobbing because my one tiny glimmer of hope is gone again.

Why hasn't anything worked? What's the point in continuing to search if decades of research and seeking new ideas hasn't worked? Doesn't seem to matter how good the odds are or how hard I try, at the end of the day I'm still stuck in extraordinary amounts of pain and having to force myself to see the silver lining or push my thoughts elsewhere. It's exhausting living everyday. It's even more exhausting when you add on never ending, never relenting pain from head to toe. It's furthermore exhausting to have to constantly redirect your thoughts to something else and try to pretend the pain isn't there or you're a word from breaking down and losing your mind.

This past Sunday our pastor had a passionate message with a word from the Holy Spirit that totally derailed his original sermon, and he felt such an intense NEED for someone in the room to hear the message he felt God was giving him. The whole series has been about running on empty (who doesn't feel this way?) and how to take God's promises to heart and lean on Him to get us through, and make sure we're running to the right things. His impassioned message was to keep holding on and that for someone in the room, possibly many, the long lost relationship, miracle, situation, whatever the case was that they had given up on or had been seeking answers for so long for would finally be answered. God was going to fulfill His promise and deliver something great. At that point I was halfway through my treatment and beginning to think it may not work, and really thought that the message was about my treatment and that it was going to begin to work. I went in to the next week and last half of my treatment with a renewed sense that it WAS going to work and I was finally going to get the relief I've longed for...but here we are.

Will it ever end? Some days I wonder. Tonight I finally have a free night to be with my husband and have quality time watching our TV shows, playing video games and just being together which hasn't happened in what feels like forever. Granted, I'm special enough to have gotten a mild concussion this morning and our plans were derailed so I could rest - but it was still something I've been craving and looking forward to. It's the weekend, so no need to wake up early or be anywhere in the morning which means we can stay up late into the night, yet it's barely 10 PM and I'm downing sleep medicine so I don't have to be conscious anymore. It just hurts too much to be awake. And my sainted husband holds me as tears slip down my face, despite my attempts to keep them inside and control myself so I don't wail and sob, wondering what he can do to take the pain away and knowing there's nothing tangible to be done. His night no longer is what he expected either. He misses out on quality time too. How do you explain to someone that it just hurts too much to be awake? How do I not feel like this is forever doomed to be how I always will feel? How do I keep going when the second I stand back up something else pushes me down?

Warrior.

I've been thinking about this post for months now, never feeling like I was ready to write about it. Even today, I'm home from work and all responsibilities because my body has once again decided to give me the middle finger and I feel so unworthy of the title - but I'm learning with each passing day that so often we grow and learn the most from being out of our comfort zone, so here I go.

The past few months I've really been discovering what it means to call myself a warrior. Over the years I've heard it as a description of myself whether it was with my medical journey, or at church I was known as one of the "prayer warriors". We've all heard it in various uses, but I've found myself so drawn to it and really thinking about it lately and what it means to me.

According to the dictionary, a warrior is someone who is involved in a fight or a soldier. Recently I asked my friends what they think of when they hear the term and as expected, many went straight to Gladiator type references and soldiers fighting in life and death battles. That's what I've always gone straight to as well, and many days I don't feel like a warrior. Especially days like today, when I'm essentially bed bound by a body that malfunctions on the daily. If anything I'm a weakling! In any sort of prehistoric society I would have been one of the first to be dead, whether it was natural selection or not even having a choice by society, being handicapped and sick. Yet on my worst days I've been called a warrior for continuing to fight. I've always been very hard on myself in this regard and tend to self-destruct and self-criticize when my body fails me, as if it's some sort of failure or choice on my part. A warrior is someone incredible strong and brave, two things I rarely feel about myself. But recently I've come to discover that maybe it does hold a truth in my life....maybe I am a warrior, and it would in fact boost my self-confidence and worth to see myself in that light.

The Greatest Showman is probably my favorite movie of all time - if you haven't seen it, you must!! Of the many incredible musical numbers in the movie, the one that has always stuck out to me was This Is Me (video down below). If you haven't seen the movie you may not get the whole picture of what's happening with just the video, but essentially this group of people are the freaks and downcasts of society - the bearded lady, siamese twins, a dwarf, etc. Society mocks them and treats them as something less than human because they're different. And at the climax of this song, the leading lady gets so fed up with people throwing her aside because she's atypical, and she's had enough! She's not ashamed of who she is or what she looks like, she's been bruised and broken and has been told by the world to be ashamed of her scars, yet she takes pride in them. The most influential line to me in there was she says "We are warriors, that's what we've become!" That's when it hit me that I did in fact see them as warriors, and I was in the same boat!

I'm literally in a fight every second of my life with my body. My heart rate, body temperature, pain levels, fatigue, even my memory can change on the spot without any warning, and in reality there isn't a whole lot I can do about it. As of late I've been battling a lot more with my anxiety and depression, which adds a whole separate element to the fight. There have been many days when I have wanted to quit. I don't feel like a positive addition to society, much less a warrior. Little did I realize that those days when I was ready to throw in the towel and give up, hide away and give precedence to my dark thoughts - THAT's when I was the most like a warrior, those were my hardest battles and I'm still here writing about this today.

You may be fighting your own battles, whether it's mental, emotional, spiritual, physical and feel like you're making no headway and feel like giving up. You're a warrior, too. Warriors don't all have gladiator armor or fight on the front lines. There are warriors all over the place. Every time you choose to be positive, or choose to continue in the face of adversity, or fight to be above your circumstances you are a winning warrior. Don't lose sight of that.

This Is Me movie clip - you gotta watch!

Paper.

As of today I have spent 366 days married to my best friend - that's right, we have officially hit the one year mark! It has been a whirlwind year, and we have been tested more than some couples who have spent decades together haven't faced and I believe we came out stronger than ever. The first anniversary is attributed to paper due to how fragile the relationship is in the first year. Looking back, I definitely have a deeper appreciation for this milestone.

Over the course of the past year-ish, I've often stared at my ring (which is gorgeous and perfect) and thought about how much more it is than a beautiful piece of jewelry on my finger, because it's so much more than that. Everything it represents has become so much more personal in the past year-ish. I say year-ish because it became a new piece of my life when we were engaged. From the moment we were engaged we planned for marriage. We registered for gifts in the planning of our home, we spoke with wise counsel and worked through things before they became problems in pre-marital counseling, and I went through the process of legally changing my name. We didn't just plan the wedding, but for our life together afterwords. There were times before the wedding that it almost wasn't on my finger - which makes it's presence that much more significant. This ring represents all the nights wrapped up in each other's arms, all the passionate kisses, the times we've cried from laughing so hard. But this ring also represents the times we've been frustrated with each other or life's circumstances.

We have been put through the ringer this year, for sure. We have been tested, tested, tested, and felt like we were at our breaking points too many times to count. Not at all because of each other, but because of the life circumstances we found ourselves in whether it be health, jobs, locale...but finally we are starting to see the other side of so many challenges. God has had His hand on our marriage from the beginning, even when we couldn't see Him. I was in and out of the hospital literally from the time we got home from the honeymoon and haven't been in the hospital for the past few months, which has been a huge blessing. It was a nice break while it lasted, as last week I had major surgery on my knee, and now I'm basically an invalid which has put another role on my sainted husband, of caretaker. Throughout my days with my husband, especially in the past week, I have seen the character of Jesus shine through Him. He never gets mad at me for my chronic illnesses or need for so much physical help at this time, but laments WITH me at the circumstances. He finds ways to make the humiliation of needing to literally be carried to the bathroom have enough dignity so I don't hate my life. He never complains about getting something for me, and manages to make my tears disappear. This is my first major surgery I've had post-marriage and it was such an eye-opening experience about the true bonds of marriage. "In sickness and health" was such an important piece of our vows that I specifically wanted in our wedding because I'm already sick and we knew going into this that it would be a crucial part of our lives - and my husband has never faltered in this.

The past year has not had a dull moment, and I definitely understand why people always say that marriage is work. But it's one of the most rewarding experiences I've ever had and I absolutely cannot wait to see where this next year, and the many to come, take us.

We're No Different.

Big news of the day: my surgery is only 11 days away!!! I am both anxious and excited. My knee has given me so much extra pain and hardship on top of my already perfectly functioning body (ha!) that I am ready for the problem to be fixed!

Many of you know I have been using a wheelchair part time for about 10 years now. But with my knee being how it is, for the past month-ish I’ve been using it at work, which has been new and an amusement park of feelings. It’s no secret that I don’t use my wheelchair all the times that I should, because of the reactions I get from other people. I know I should be more mature and ignore the people, but when it’s your whole life and you don’t have to actually deal with it – that is a lot easier said than done.

After bringing up the topic with some of my non-disabled friends I was enlightened to find out that the reactions so many of us take the wrong way are sometimes people just being uncomfortable or not knowing how to handle the situation. So I’m hoping to shed light on the situation and tell my story from my perspective.

There are so many different reactions I get in my wheelchair – some positive, most not. To over-simplify it: treat us as you would any other person. That’s what we want and need. It’s hard enough mentally to go out in public in a wheelchair, fearing what people will say or do, and we don’t need it made harder by people treating us differently. My IQ doesn’t drop because I’m sitting down. I’ve gotten several comments from patients and their family members in the neighborhood of “A medical professional in a wheelchair? Wow!” or “You’re working in a wheelchair? That’s too hard.” Or several times I’ve gone into a room and heard “You’re in a wheelchair!” Yes, I’m aware. I’m also aware of my age. Unfortunately, disability doesn’t filter out based on age or occupation; it can happen to anyone at any stage in life. There’s no need to point it out. Trust me, we are hyperaware of our situation and are trying to lead as normal a life as possible, and you pointing it out for no particular reason other than to bring attention to it is embarrassing and unnecessary.

It is natural to wonder why someone is in a wheelchair, but there is a considerate way to ask. It’s not very helpful or constructive to ask someone “What’s wrong with you?” It automatically makes that person feel less than equal. If you’re curious and feel it’s an open moment, say something to the effect of “If you don’t mind me asking, why do you use a wheelchair?” This gives the person an opportunity to share if they feel like it, and to spin it positively by saying it aids me in this way or this is what condition I have, as opposed to something negative or wrong.

Surprisingly in the healthcare field, or at least my experience with my current facility, some people have straight up ignored me, or started conversations where I can’t hear or be involved which is frustrating. If I was standing, that wouldn’t have happened or I could have squeezed my way in, but in my chair I can’t.

One last topic I will touch on is praising disabled people like we’re superheroes. Yes, we very much appreciate when it’s recognized how much harder we fight to do the same things, but as with everything else there is a proper way to go about it. I don’t need you to be impressed that I’m holding down a job or going to the grocery store. It’s not appreciated when comments like “Good for you for getting out of the house” or “I can’t believe you have a job!” are stated. Just because I need to sit more than you doesn’t mean I’m some sort of demi-god for still doing what’s expected of a productive member of society. If anything, recognize the struggle. Say “Wow, that must be really hard,” or comment on their strength and determination. We want normalcy. We crave it. If I’m doing something ordinary but just happen to be in my chair, it’s not an Olympic medal worthy thing. It doesn’t need to be commented on.

Hopefully this helps non-disabled people see a little into how their (sometimes) well-intentioned statements are taken from the other side. Honestly I think it just is a lack of understanding from each side. Our culture is so quick to point out differences and especially with the rise of social media it seems like so many ordinary life events are now competitions for who can do it the best or putting on a happy face when behind closed doors life is completely different. Many people are taught that different automatically means worse, which isn’t the case. When you interact with someone in a wheelchair, just treat them like you would anyone else. We’re not as different as you think.

*Note: I do not speak for all disabled people who use a wheelchair. I’ve just dealt with this personally for so long and have many friends who feel the same way. There are times when we need help, were not invincible and DO need extra help, but still want to go about our life without that being any more of an issue than it already is.

2017.

So I'm technically a day late, but it's time for the annual review post!


I've tried to think about how to describe this past year, and I don't think there's one word that can properly package it all together. 


The biggest event of the past year, and possibly my entire life, was that I got MARRIED! Still in disbelief that I have been blessed with having my best friend beside me forever. We both got to experience our first cruise and travel internationally which was one of the best experiences of my life. But literally the moment we docked we were lost in the current of unrelenting waves of medical uncertainty. From February until August I was in and out of the ER and hospitals more in that time frame than I probably have ever in my life. We were somehow immediately thrown to the wolves of marriage. Yet with every new update to the situation or with each new admission, I no longer found myself fighting alone - I had a partner to hold me up each step of the way.


I got to fulfill my dream of having my wedding (sort of) at McLane Stadium. I was surrounded by sweet family and friends, and got to introduce my HUSBAND to my insane Baylor-obsessed self. Not to mention we had pretty stellar cake to top it off, and as promised it was not smashed in my face during our first bite.


On top of the daily medical battles that were now the icing on top of my "usual" health issues, we had both found ourselves in a town we felt we no longer belonged in, at jobs we no longer loved. I can't express the mental struggle everyday of having to wake up and force yourself to get up, dreading the day ahead and looking forward to already being home. And then because of your impending dread for the next day, your few hours of solace at home aren't truly enjoyed either. After months and months of searching, interviewing, praying...God led us to CORPUS CHRISTI! Never in my life would I have thought I would get to live so close to the beach - and it's awesome! We've been here about 2 months now and still count everyday as the biggest blessing. I didn't realize how downtrodden and truly depressed I was, until I came somewhere I actually wanted to live and work. It's been hard moving to a new place and trying to make new friends and begin our lives here, but it's absolutely where we are meant to be.


We got to experience our first holiday season as a married couple, which is wonderful and a lot to handle all at once! Suddenly there are 2 families to balance all the holidays with, and now that we live so much farther it becomes very logistical. Also throwing into the mix that we're both starting at brand new jobs and didn't have much in the way of vacation time. But it was a wonderful experience seeing our families and having our first married Christmas. This year we have a house to decorate for the first time, bought our first real Christmas tree, and got to do the whole thing upright. And instead of being stressed at our inability to properly tie a tree to the top of the car (which was quite hilarious to passersby, I'm sure) or worry about the mess of Christmas light boxes everywhere, I have made a significant effort to really drink in this time. I know that years from now we will look back and remember our first Christmas fondly. Also, we moved to the most southern part of Texas and somehow got to experience snow!


While my tiny world has been a hot mess this past year, it seems the same was true on a global scale. This year brought with it a series of earthquakes, hurricanes, bombings and political upheaval. We have a new president that has finished his first year in office with some really impressive highs, though of course not everyone is on board with him. We watched through teary eyes as so many lost their lives in the Las Vegas shooting, but then got to see a glimpse of the good when Houston and surrounding areas came together so quickly and cohesively after Hurricane Harvey.


I managed to have my first set of stitches not from a surgery, but from the not at all embarrassing moment of falling on a broken glass candle and cutting my hand open. My family and I experienced the excitement, along with many other Houston alum and all Texans while the Astros won the World Series for the first time. I grew up constantly going to Astros games back in the day with the Killer B's - Bagwell, Biggio, Berkman....had the world's biggest crush on Jeff Bagwell my entire elementary life, and getting to see all of that come together and bring people of so many backgrounds together was a really incredible moment.


Looking back on the past 365 days, it sometimes feels more like five times that amount of time has gone by. The first few years of marriage are theoretically your hardest, and in the past year we have been through more as a couple than some couples face their entire lives - and we are stronger for it. 2017 had a lot of moments I won't be sad to see gone, but there were also some moments that I would relive every day if I could. I have a feeling this next year is going to be a pretty intense one as well. Heck, I'm starting it off with a major reconstructive surgery that will have me down for quite a while. But after I learn to walk (again) and get up, I hope that I'll be stronger than ever and I'll hopefully have you along for the ride.


Blessings to all, my dear friends.