an invisible illness

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I always had a dull ache from my rib to my hipbone, with shooting pains radiating down the top of my thigh. I got so weak my legs and arms would shake. Horrible headaches. So dizzy I couldn’t hear what the person next to me was saying. I felt like someone was stabbing me in the stomach and twisting the knife.

I don’t say this to be dramatic or for pity, I just want you to understand.

Last year at this time, I was newly married in our recently-purchased home, having just returned from our honeymoon. I was working out with my husband each morning, going to work, and so excited for the future. Life felt so sweet. Except… something didn’t feel right. I’d had to leave work because of pain. I was absolutely and utterly exhausted – hit a brick wall exhausted – and it would hit me out of nowhere. Looking back, it’s hard for me to recall a time I didn’t have pain in my side, stomach, or back.

After a month of escalating symptoms, I made a doctor appointment. When I met with the doctor and explained, he asked me a few questions. He looked perplexed… I had no other symptoms. The doctor gave me antiobitics, set me up to have an ultrasound, and said, “Try the antiobiotics and we’ll take a look at the ultrasound results. If that shows nothing, we’ll chalk it up to another one of nature’s mysteries.”

I certainly was not going to take medication for an undiagnosed illness. I went for the ultrasound. The tech saw a few ovarian cysts, and said she couldn’t see one of my ovaries. She told me this happened on occasion. Nothing surprising. Before leaving, she said, “If you don’t hear from us within a week, just give us a call. I don’t want you to get lost in the system.” Thanks.

I decided I would get a second opinion. The next doctor? He was kind, he listened, and he mentioned endometriosis. I’d heard of it before, but admittedly, I didn’t know what it was. He wanted me to try taking hormones (birth control) to see if it helped at all. I will leave my birth control theories for a later post…

I tried it, but I was having side effects and was advised to quit. I went back for a follow-up appointment. The doctor asked if I wanted to try another. Honestly, I was tired of pain, tired of emotional ups and downs from hormones, and tired of not knowing anymore than I had 6 months ago. Sensing my frustration, he again explained that endometriosis could be the culprit and he said that the only way to diagnose it was through a laparoscopy – an “in and out” surgery. I wanted answers. I scheduled the surgery.

I cried on my way home from that appointment. Not because I was nervous, but because I felt like I was crazy. It seemed like everyone around me thought I was fine, but I felt so physically miserable. I remember saying to my mom, “What if I go through with all of this, and they don’t find anything?” She replied, “Then that would be a blessing.” I realize how crazy it sounds now that I felt like people thought I was crazy, but when they can’t see that you’re sick, it’s hard for them to believe you’re suffering.

I didn’t think much about the surgery and what it could mean until the week before. I just kept telling myself that I’d worry when I had to. Until then, I didn’t jump to conclusions; it was a diagnostic surgery, after all. I was having it on a Friday and didn’t even request off any time from work. In and out, right?

Wrong. I woke up from the lap to learn that the doctor had removed endometriosis covering my right side and a uterine polyp. I sat with the nurse after, as she told me all of the things I couldn’t do while I was recovering. She told me I couldn’t drive for a week. I looked at my husband and said, “Oh you’ll have to take me to work.” She laughed in my face. “You aren’t going to work. You need to rest. 7 days.” I tried as hard as I could to fight my husband on this, but he made me follow the doctor’s orders. I ended up being really glad that I did. With 3 incisions in my stomach, I couldn’t do much. And I was so tired that I didn’t want to.

I ~~researched~~ Googled as much as I could about endometriosis. The more I read, the more scared I became. I was presented with women of all ages suffering from the illness. Pain, infertility, major organ complications! I read how foods (basically everything yummy) caused symptoms to worsen. I read about woman having surgeries continuously throughout their lives. I wanted scientific information that I could count on. I eventually went to Barnes & Noble to look for books about it. There were none in stock. There were books about Menopause, Cancer, PCOS… none about endo. I searched women’s health forums online again for any stories of women that I could relate to. It’s hard when you talk about it with people who love you but don’t have it. They will tell you they have bad cramps, that they understand. I know they mean well. The truth is that physically, endometriosis is brutal. But even now, while I’m not in pain, knowing I have it and what that could mean is emotionally exhausting.

When I returned to the doctor, I was already feeling so much better than before. I don’t think I ever really knew how bad it was until I was finally feeling how a “normal” person does. The doctor told me that I had 2 options to prevent the endometriosis from spreading rapidly:

1) Hormones (birth control)
2) Hormones (mimicking menopause)

Obviously, I chose the lesser of the two evils, because what 24-year-old wants to enter menopause? Due to side effects, I recently stopped taking hormones. With that decision comes questions: What now? Without hormones, how will I combat endo? What if it comes back? What if I need another surgery? These days, I feel like I’m gambling with my health. I’m trying to focus on what I can control – diet. While I only seem to be able to find theories, I figure that if nothing else, at least overall I will become a bit healthier.

As I’m searching more online, I’m coming across many women speaking out about endo, but the common theme that it’s just simply not talked about due to the fact that it is often overlooked or downplayed as a bad period or PMDD. I’ve read that endometriosis can be comparable to cancer with how quickly it spreads! Yet no one talks about it and many don’t even know it exists. It may be an invisible illness, but it will not make me invisible. I pray this can change; that I can play a part in raising awareness, that I, as a woman who suffers from it, can inform others about it and openly support others.

I hope that sharing my story may help someone who is frantically looking for more answers or just searching for anyone else in the world who might be able to relate to what they’re going through.

❤

The Game of LIFE

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One night last week, I walked into my house, looked at my kitchen table and I noticed something different than usual. I saw two brand new board games and a card. My husband walked into the room and said something along the lines of…

“I know that things get crazy and hectic, and we get distracted by our phones and tv, but we need to remember what’s important.”

Then he asked me if we could have a game night. No electronics (except a little bit of music, of course) – just us, Yahtzee, and the Game of LIFE. After hugging him lots in appreciation of the effort, I happily obliged. We laid a blanket down on the living room floor and we played games for over 2 hours. And you know what? It was the highlight of my week. What I initially thought was an adorable and romantic gesture, quickly showed itself to be an invaluable lesson.

While I sat across from him, pouting about my less than fortunate luck in the game of LIFE, then basking in my Yahtzee win glory, I couldn’t help but feel ashamed. Days before, we had played Words with Friends and Trivia Crack for hours on end on our phones. We were with each other, sitting next to each other, talking occasionally, playing a game with each other, but our eyes never left our screens. We were completely wrapped up – except when the occasional work email distracted us, or something interesting (or just plain loud) occurred on TV in the background.

When I would daydream about being married to Corey, I never once thought about how much fun it would be to sit next to each other during the week without talking about anything of importance, playing on devices, scanning social media waiting for likes and tweets and favorites – I thought about how I couldn’t wait to spend time with him after work, sharing the highs and lows of our days, being silly together.

When I make plans to grab coffee with a friend, I don’t anxiously look forward to sitting across from each other texting other people on our phones – I look forward to drinking a warm cup of coffee and catching up.

I don’t go to my favorite restaurant with family so I can take pictures of my plate – I go because the company is great and the food is delicious.

It all seems obvious, right? What’s the point of another person’s company if we are focused on everything except the person we’re next to? Are we too blind to see the consequences of our mindless actions?

Most importantly, how many more hours would I spend with God during the week, if I replaced online “shopping” with scripture and prayer? My heart breaks at this realization.

Every week, I spend 50+ hours on my laptop, phone, and iPad for work – this does not count browsing social media, playing games, searching for music, hunting down recipes on Pinterest, scoping out furniture for the house, looking at clothes to (put in the imaginary shopping cart and not) buy, asking Google pointless questions, logging calories, checking the weather… It all adds up, doesn’t it?

I love my devices. Without these beautiful things, I wouldn’t have my career! The possibilities are truly endless. They do a lot of good for a lot of people, but like most things, it’s all about moderation. Notice the repeated word? THINGS.

This week, I read a post from Lysa TerKeurst, that was shared on Proverbs 31. It sums it up perfectly and has left me feeling challenged:

“Most of us spend years chasing things in this world that we think will make us feel loved. But everything this world has to offer is temporary. Everything. The kind of love our souls crave is lasting, eternal. And only God can fill up our hearts with that kind of love.”

a leap of faith.

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What would it take for you to walk away from a sure thing, to pursue a passion that has been burning inside you?

Today my husband officially began his career in real estate. For the longest time, he has been talking about joining his dad’s team. He had an excellent job, especially for being his first professional one after graduating college. He was by no means unhappy in his career, but he felt called to help others buy and sell homes.

When he passed his realtor’s exams, I was so incredibly, genuinely happy for him – I saw the excitement in his eyes. I felt the motivation. I knew this was what he wanted to do, and truthfully, what he was meant to do.

But I had fears. I am a planner and love routine. I am predictable. I loved the idea and potential of this career, and even more so, I loved that it would fulfill him professionally.

That said, the idea of him leaving a job with a sure income scared me half to death.

I quickly spiraled down the dark hole of what if’s until I had to share all of these concerns welling up inside of me. When I talked to him about it, he reminded me about a little thing called faith.

What I have always admired about my husband is his eternal optimism. We joke about it from time to time – how happy-go-lucky he is and how critical and analytical I am. But having that conversation with him made me realize that is not the trait of optimism that I admire, but instead, the faith that in God that is instilled in his heart.

When he says he knows it will be okay, he truly believes it. He knows it. When I start to lose sight, he brings me back. And it is because of that faith that he [we] can venture into the unknown – to jump.