I stopped praying for an easy way out.

If you’ve been following my story you know that I have a unique case of a very common illness called endometriosis. I aspire to one day live in a world where people understand that endometriosis is so much more than painful periods, and that it affects every aspect of my life, but we still have a ways to go.

It’s been a really difficult month for me and I continue to feel defeated each day. I’m missing classes. I’m taking lots of prescription narcotics. I’m not sleeping much, but when I am it’s usually at a time between 4 AM and noon. I’m not able to eat on a normal schedule, and oftentimes can’t handle food until dinnertime. I’m spending the majority of my time in bed but not relaxing. I’m struggling to keep up with normal daily tasks. I’m feeling disengaged from college life.

It is really isolating being trapped in a bubble of pain, nausea, and fatigue, where you can see everything going on around you, but you are incapable of being fully engaged. Because I am in constant severe pain, I don’t get to be the lively person I want to be. I get to be the person who spends most of their life in bed wearing a TENS machine and watching Disney movies.

I’ve had to miss out on a lot of things because of my health, including my entire senior year of high school, but I’ve never hated being sick more than I have this month. This semester has been full of wonderful things, and it is hurting me so much that I can’t fully enjoy them.

I haven’t had a pain free moment in almost 6 years, but I don’t think God gave me this chronic pain because he wants to laugh in my face as I suffer.

I think…

He wants me to be reminded that I am weak on my own.

He wants me to understand that I don’t have it all together and that is fine.

He wants me to have a little uncertainty about things, because not my place to know all the answers but it is my place to trust in Him.

He wants me to experience a small glimpse of the pain He felt when He died on the cross to save me.

I don’t think it’s wrong at all to ask God to heal an illness. In fact, I think it shows great faith to believe and know and trust that he is capable of curing an incurable illness. I DO pray for healing because God is the ultimate healer.

But I stopped praying that God would eliminate my suffering and started praying that He would guide me through it. It’s not that I don’t want to live a life without chronic pain, but I know I’ll get there someday when He calls me home. For now, I live in a broken world. It’s not just me and my body thats hurting. I know this whole world is messed up, and everyone is fighting a battle of some sort. I wish my pain and sorrows would go away and I wish your pain and sorrows would go away, and I wish these things because I think that would be best for myself and for everyone, which just shows how foolish I am.

Because I know with all my heart that God is far more aware of what is best for us than I could ever be, and he considers this when he places painful circumstances in our lives.

It’s easy to feel frustrated with God when you’ve been struggling with something and He doesn’t free you from it. I spent years begging God to take away my chronic pain, thinking it would bring me closer to Him when it was actually pushing me away from who he really is. If God were to take away everything that causes pain or heartache or trouble in our lives at our immediate request, would we really be pursuing a relationship with him on a deep level? Sure, we could praise Him for answering our prayers, but I know I wouldn’t genuinely mean this praise if it became guaranteed that every time you ask God for something he gives it to you right away. I wouldn’t need to lean on Him for strength if He would just take away all of my weaknesses. I wouldn’t need to look to him for joy if He would just take away everything that causes sadness in my life. If I never felt lonely or stressed or sick then I would be doing okay on my own and God didn’t create us to be doing okay on our own.

I really don’t think God is up there taking pleasure in the fact that we’re all hurting, even though He does give us these circumstances. It’s okay to struggle with doubt and fear and to be upset when God doesn’t answer your prayer the way you wanted Him to because we are humans and it is undeniable that we will feel these emotions. It doesn’t diminish your salvation.

Dan Allender stated, “The irony of questioning God is that it honors Him. It turns our hearts away from ungodly despair toward a passionate desire to comprehend Him…As we see the world for what it really is, we have a choice – despair or God.”

When I’m awake at 4 AM with a severe pain flare up and I stumble to my medicine box, forcing my nauseous self to eat something with the morphine I’m taking, I cry out to my God. I might ask Him, “why?” but I stopped revolving my prayers around begging Him to give me an easy way out. I ask Him to guide me through the pain. I ask Him to provide me with enough energy to make it through the day. I ask Him to give me faith and strength to trust in Him. I ask Him to bring people into my life to point me to Him when I feel weak.

God is so good, friends. He is on my side. He is on your side. He is weeping for us, but He knows far greater things than we do.

John 16:33 – I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.”

Let’s get coffee and have conversations. If you’re still reading at this point, I want to hear your story.

In His Grace,

JV

(This has nothing to do with what was written but my dog and I have 2 pairs of matching pajamas and I just think everyone should know that.)

 

2,039 days.

 

(Please check out my previous blog post about my secret battle with severe endometriosis before embracing this one)

I was sitting in my friend Lily’s car 7 months ago with a few other dear pals I had grown close to. We were road tripping home from a weekend retreat and somebody invited the question “What is something in your life that has impacted or changed you the most?” into the conversation. We went around and shared and I went last because I always enjoy having the last word. I struggled with finding a genuine way to deliver my story. No one had had ever asked me this question before and meant it. I had been living in Nashville for 6 months and had not yet told a soul, but in that moment I was vulnerable.

 

I took off a mask in March 2016 when I published my story and let it be viewed by thousands. It was a humbling thing for me to go through, but I’ve slowly let the mask creep back on. I let speaking out for women’s health and invisible illnesses be relevant for about a month, but then I went back to default answers:

“I’m fine” instead of “ I haven’t left my house in 9 days”

 

“I went to see my specialist in Atlanta again” instead of “I spent 26 hours in the car for a 1 hour long appointment to talk about me not being able to have the surgery I need until after I have kids”

 

“I’m trying a new medicine” instead of “I was already on this same birth control pill when I was 14 and it made me really sick and destroyed my hormones but they’re encouraging me to try it again because we don’t know what else to do”

 

“I don’t need to take any pain meds today” instead of “I’m in unbearable amounts of pain but I don’t want to take these narcotics that were custom combined for me because being this loopy is uncomfortable”

 

“I don’t feel like going” instead of “I don’t want to drive right now because I feel like my ovarian cyst might rupture”

 

“I’ve been really tired lately” instead of “I have a severe illness and that is why my entire body always feels like it was run over by a bus”

 

“I’m just going to rest this weekend”, instead of “I’m going to avoid making plans because I’m scared I might have to cancel them and that would make me look and feel bad”

 

I struggle with finding a good balance between complaining and just being honest with people who I know I can be honest with, so I’m going to do a little of both right now. It’s hard, y’all. Being sick for 2,039 days is hard. Forcing yourself to eat when you feel like you’re going to throw up is hard. Sitting in class while you have shooting nerve pain is hard. Maintaining a conversation when you can feel the inside of your body falling apart is hard. But I wouldn’t trade this pain for not ever knowing it.

 

After my story was published, I received countless messages from friends, friends of friends, friends of friends of friends, and so on giving me a little perspective of the world.

“I don’t really tell people this, but I struggle with ___________”

“God is using your story to help me open up about my health”

“I’m going through this too. You’re not alone”

“I had no idea this was going on but now I can be praying for you”

 

I’ve been caught up in my own battle for 5 years and I didn’t realize that everyone else has their mountains to climb. When I was wearing the mask of my own invisible pain, I was blinded to the invisible pain that is in everyone. I know God sees this pain in all of us. He weeps with us, but he gives us these battles for a reason. It is far beyond my understanding to know why I’ve been sick for 2,039 days, but it is a constant reminder to me that I am just a weak little human who needs to lean on Jesus for strength. We all need strength from Him, but I’m thankful for my constant physical weaknesses to remind me that He is in control and I can not get through a day by myself.

 

There is another reason why I wouldn’t trade my 2,039 days for anything.

 

I know what real is.

 

I’ve been through some significantly challenging times. I’ve had a lot of moments where I was not physically or mentally okay, but they taught me what it means to be real.

 

Real is lying in your bed until 6 am unable to fall asleep because your entire body kills.

Real is needing one thing from the store but not being able to drive because of the medicine you are on.

Real is needing to go pick up a package but not being able to walk to the mail center because its raining and you’re wearing an electrical machine.

Real is staying home all weekend because anything more than walking from your bedroom to the kitchen is too much.

Real is not being able to shower because you are too dizzy to stand for that long.

Real is bleeding when you’re not supposed to be and not knowing why.

Real is getting a fever when you get your period because its so bad that your body thinks it has to fight something off.

Real is having anxiety about what tomorrows symptoms will be, especially if you have plans.

 

I also have a really strong appreciation for joyful things. I didn’t just learn about what real is through these painful times, but through some incredibly good moments as well.

 

 

Real is sleeping on a houseboat with 30 Jesus-loving friends.

Real is eating chips & queso for dinner on your friends couch.

Real is going for early morning hikes with 2 of your dearest friends followed by lots of donuts.

Real is worshipping Jesus by singing hymns with 100 people who are just as broken and beautiful as you are.

Real is spontaneously getting invited to lunch with a group so big you have to wait for a table.

Real is going to outdoor concerts with your gracious roommate, who cleans the dishes from your late night snack every morning before you get up.

Real is going out for coffee with your brother and not being able to connect to the wifi so you actually have to talk to each other.

 

These are a handful of the real moments I’ve had in the last 3 weeks, since I’ve been back in Nashville. It’s amazing how re-entering the community that showed me how to be vulnerable last year has made me realize that I let it slip away over the summer. My joy and sorrows are both very real, and I know I am certainly not the only one who has a grip on reality.

 

My prayer for anyone reading this is that you would be vulnerable this week. If being honest about your fears and struggles is being interpreted as complaining, then I hope you find different people to be vulnerable with. I started in my friend Lily’s car and that lead to a story viewed in 33 countries. Please hold me accountable this year so that I don’t let the mask come back on.

 

In His Grace,

JV

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This picture is not relevant to the story but WordPress says people like your blogs better if you have pictures in them so please enjoy this snapshot from my wedding with Mickey Mouse.

Breaking the Silence: My Secret Battle with Severe Endometriosis

Ok Y’all. It’s time.

It took 19 years for me to realize that women’s health isn’t “gross” or “inappropriate” and that I should not be ashamed of my story. Our society idolizes the outward appearance of a perfect female body, but when a word like “endometriosis” comes up, we all run and hide. Not being open about the severe health problems I’ve been battling for the past five years in order to protect the innocence and comfort levels of others is something I regret.

 

One day in February 2011, I woke up feeling severely ill, and I’ve been severely ill every day of my life since then. I was robbed of my childhood at the age of 14 when I was diagnosed with a severe chronic illness called endometriosis. I ask that you don’t google the term or talk to a doctor to find out what this illness is, but instead that you would embrace my story.

Chapter 1. What is endometriosis?

 

I could write an entire book, in fact I probably will someday, about how I HATE answering this question. I hate explaining what is going on inside my body and using words that make people uncomfortable. I hate having to condense the details of a very complicated disease in to a sentence or two during small talk. But most of all, I hate saying “I have endometriosis” because that often results in misunderstandings about the severity of my condition. This illness is very common in women, but levels of severity vary greatly. My story is a lot different than the girl you know who has this but can still go to school and work everyday, or can take an over-the-counter pain killer and get on with her day. There are so many statistics that go along with endometriosis, but it’s time to STOP focusing on the statistics and START focusing on the stories.

 

Endometriosis is a severe illness found in nearly 10% of women. During normal menstruation, the lining of the uterus sheds and it exits the body. In women with endometriosis, this tissue grows and spreads to other areas of the body including ovaries, bowel, bladder, pelvic area, fallopian tubes, cervix, and even lungs and the brain. Unlike the “normal” tissue, this tissue has no way of leaving the body, and can result in internal bleeding, cysts, inflammation, scarring, and adhesions. The primary symptom of this is severe pelvic pain, usually associated with menstruation, but in some cases like mine, this pain as well as other pains and symptoms are constant throughout the entire month. Severity and frequency of pain varies greatly among the millions of women with this illness, and does not correlate with the stages of the disease, which is partially why it is hard for people to understand and take this condition seriously.

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Endometriosis is not terminal. It isn’t going to take your life, but (in cases like mine) it is going to keep you from really living. You have to work twice as hard for half the success of a non-sick person, even in the small everyday tasks.

 

The Center for Endometriosis Care states:

Endometriosis has the potential to disrupt every aspect of an affected individual’s life; from physical, mental, social and emotional health to interpersonal relationships, career and academic opportunities, infertility/pregnancy loss, sexual pain/dysfunction and more. Often invalidated and ignored by medical and lay society alike, many struggle with the disease in silence.

 

 

Chapter 2: My story in a nutshell

You could argue that my story begins in 1996, since endometriosis is a condition that you are born with, or that it begins when I was ten and started my period and was in pain for a few days each month, but I’m going to jump to February 2011. I was 14, in the 8th grade, and did not realize how much my life was about to change. One morning I woke up and had severe cramps and overall body aches, so I stayed home from school.Not just for a day, but for about a month. My mom researched my symptoms, talked to several doctors, and took me to a few different gynecologists and it became reasonable to assume that I had endometriosis, although the only way to diagnose the disease is through surgery, and since there aren’t any excellent ways to treat this illness, we didn’t rush on the surgery.

 

I went back to school, but not on a regular basis. I would show up for a day or two, then miss for a week or two or sometimes months. Sometimes I would go to school for only an hour and it would be a huge victory. I had to take a lot of crap from teachers, students, and other faculty, but I was too sick to care about anything other than getting by.

 

On July 12, 2011, I was officially diagnosed with endometriosis via laparoscopic surgery.

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A candid moment with my family after my first endo surgery. Please find humor in the fact that I look like a thumb.

 

I started high school a few months later, and thought that I had been doing much better (thanks to lots of rest over the summer, and a great prognosis). However, it was the same story. I missed at least one day of school each week, but usually more and often multiple weeks at a time. I kept up with my work, communicating with my teachers and having my brother turn in my homework every day, and I was getting A’s and B’s despite teaching myself. In November of my freshman year, I was given the message that I was an inconvenience to the education system, and since I would not be able to be successful in college or in a job, that I should just drop out of school. I went on medical leave to finish the semester up at home, but when January came around I fought for my legal right to go back to public school and be educated without discrimination for my health. So I finished out the year, severely ill and in unbearable pain each day, still missing unbelievable amounts of school at a time. It wasn’t until my sophomore year (after I switched to a small, private, Christian school) that I attended a full 5-day week of school (but even that wasn’t “full” because I started my classes 3rd hour). My parents rejoiced and bought me presents and wrote me cards and it was a huge deal. I let my hopes shoot up so high in moments like this, but my health was still unpredictable and consuming my life. And soon after this I got worse. I went to several local doctors, then branched out to doctors in other cities, but no one could figure out how to help me.

 

On January 28, 2013, I traveled from my hometown of Grand Rapids Michigan to Atlanta Georgia to see one of the few endometriosis specialists in the world, Dr. Kenny Sinervo. That required a 12 hour trip, lots of negotiating with insurance companies for out of state procedures, and a recovery that was so long, but so normal in relation to the pain and sickness I had every day anyway. He performed laparoscopic excision surgery on me, which, although it is NOT a cure for endometriosis, typically results in no recurrence or growth of endo in 93% of cases.

 

But I was in the 7%.

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Recovering in Atlanta with my stuffed animal support system.

 

I went back to Atlanta to see him again less than a year later because I was still in unbearable pain every day and getting worse and worse. He discovered that my rare case of endometriosis had come back, grown, and even spread to my bladder. He performed another surgery, which I think did help overall, but I am still experiencing severe pain every day 2 years later.

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Atlanta Surgery Round 2

 

I missed about 4-5 months of school with each surgery, but that was normal now, and I was managing to keep up and maintain decent grades.

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When I went back to school in the spring of my junior year, I did not feel welcomed back. The year before when I had surgery everyone was so relieved because they thought it would fix me and I wouldn’t be a burden on their education system any more, but this time they were done with it. To be fair, this school was a lot nicer than my first high school when they kicked me out. They even let me fight back a few times, but eventually I gave in and decided it would be best for me to do my senior year online.

 

I graduated a semester earlier than I would have in a normal school setting, pushing through the pain each day.

 

I never got to wear a cap and gown or go to a school dance or basically any social events in high school. I missed well over 100 days of school every year from 8th to 11th grade. I spent my 15th birthday in the hospital having a procedure. My 16th birthday I had to leave school because I passed out in the office due to unbearable pain. The week of my 17th birthday I went on medical leave from school for 4 months. My 18th birthday was scary because I realized I now have to talk to doctors by myself like a grown up. My 19th birthday I spent in my dorm by myself and did not interact with other human beings. But I do know this: God is so good. He has done and will continue to do amazing things in my life through all the pain and brokenness I have felt, and I feel so blessed to have Jesus as my rock and my hope.

“For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.” – Romans 8:18

There will be a day, Y’all, when I will be free from pain and I will see Jesus face to face. But until then, I am not called to live a “normal” life.

I also have been diagnosed with adenomyosis and polycystic ovarian syndrome, which are both in the same family as endometriosis. Adenomyosis is when the uterine tissue grows in to the uterine wall and this causes a lot of severe overall body pain as well. Polycystic ovarian syndrome is a hormonal disorder causing enlarged ovaries and lots of cysts. Both of these as well as endo are extremely hard to diagnose and treat.

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Polycystic-ovary-I

 

 

Chapter 3. A brief note on my treatments

 

By my 18th birthday I had lost count of the amount of birth control pills I had been given (And for the record I was very much a virgin). These hormonal methods are often used to treat endo, however I reacted to pretty much every kind in a severe way that affected my ability to live and made my pain and sickness worse. You know those rumors that those pills make you have painless periods and clear skin? Not true for everyone.

I am allergic to Motrin, Advil, Midol, and all NSAIDS. I’ve tried Tylenol and Aleve enough to know that they don’t do anything for this kind of pain. I’ve tried Toradol, Tramadol, Naproxen, and more and have had terrible reactions to all of them.

I laugh and roll my eyes a little bit whenever someone tells a story about how they took Vicodin or morphine or dilaudid once and acted really weird because those are my normal. My go-to prescription drugs. I may or may not have taken a (prescribed for pain) morphine the day of my ACT, so your “one time when I was on morphine” stories are not fascinating to me.

I also take a lot of vitamins, work with diet, and use organic products and food as often as I can.

I have special medicine patches that I wear on my feet when they are killing me which is basically all the time.

I’ve tried things like acupuncture and mayan massage, but I did not commit to them long enough to notice a difference due to other complications.

I have two different portable machines that you may sometimes see me wearing. They look like tape recorders or really old walk mans and not medical equipment. In other words, please don’t throw snowballs at me because I wear electronic medical equipment and that could be dangerous.

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Two portable machines attached to my abdomen to help with pelvic pain.

Chapter 4. What is normal for me?

While my condition is unpredictable and symptoms are changing all the time, a normal day for me consists of really severe pelvic/uterine cramps, sharp stabbing pain in both ovaries that worsens when I walk or sneeze or laugh or move, overall body aches and severe shooting pain in my arms all the way down to my finger tips as well as from my back all the way down to my toes. This pain is constant and it leaves me feeling fatigue all the time. I’m never not feeling like I was run over by a bus.

 

Vital Health Institute stated in regards to endometriosis,

“Grinding fatigue as severe as that experienced with advanced cancer is present in most cases”  

 

I also get severely nauseas, like that horrible feeling you have right before you throw up (only I rarely actually do throw up, so it’s just a lingering pain). This happens every morning and usually goes away around 3:00 in the afternoon, and sometimes comes back at night.

I get severe migraines to the point where I can’t handle light or sound or smells.

And don’t even get me started on insomnia, because I’ve had that since I was an infant. But it’s so hard to fall asleep at night when I feel like this, no matter how exhausted and fatigue I may be. The anxiety of not knowing what my pain or sickness will be like the next day haunts me each night.

 

Chapter 5. What they say.

I’ve been told that this isn’t a real illness because it’s not that bad and so many women have it.

I’ve been told that I am not allowed to talk about it because it’s inappropriate to say things like uterus and ovaries.

I’ve been told to shut up because what is happening in my body is gross and makes boys (and girls) uncomfortable.

I’ve been laughed at (literally) because people think I’m joking when I say I’ve been sick every day for five years.

I’ve been questioned and accused by my peers and classmates who believed I was faking something to get attention.

I’ve been told by my principal that all I needed was an attitude adjustment and then I would be healthy enough to come to school.

I’ve been told that it’s all in my head.

I’ve been told “I have really bad periods too”

I’ve been told “My periods are so bad that I have to miss school sometimes”

I’ve been told “You should just sit with a heating pad and take a midol, that’s what I do”

I’ve been told, “yeah right” when I tell people about my medications

I’ve been told “Get better soon” even though this illness is chronic.

I’ve been told “I wish I had that then I could stay in bed all day like you”

I’ve been told “Aren’t you feeling better yet? How can you still be sick/in pain?”

I’ve been told “My parents would never let me stay home from school for just cramps”

I’ve been told that I was fine when I wasn’t.

I’ve been told I don’t look sick

 

But I was never told that it was ok to share my story, until I went to college and found a few people I could be truly vulnerable with.

 

 

Chapter 6. How this affects me mentally.

You never really get used to a pain like the one that lingers with severe endometriosis, but other people get used to it for you. When they hear about it the first time there’s a little bit of sympathy, but it shortly becomes the norm. It’s easy for people to forget, and I don’t blame them because I do a pretty stellar job at masking the pain and sickness.

 

It’s so hard to fully be there in the moment. I can’t ignore the fact that my entire body is consumed with pain every second of every day, and that gives me the disadvantage of not being able to live life to the fullest.

 

I’ve really struggled with making and keeping friends due to being so mysteriously ill, canceling last minute because of severe flare-ups, and just being a bore because my body is so weak.

The truth is, I think we all long to be understood in whatever trials we are facing. I know I do. It’s lonely suffering in silence, and its really hard to break that silence when people have already seen you laugh or dance or do something cool. Once you give people the impression that you’re a normal person and you’re doing just fine, there’s no escaping that, and it’s really hard for them to envision your pain. I think everyone can relate to this on some level.

Conclusion.

 

Right now, I am a freshman at Belmont University, my dream college. Despite not looking sick enough to have disability accommodations, I have priority scheduling, which allows me to balance my schedule and pace myself a little differently than a normal student. I have my own room to limit my exposure to other people, noises, germs, and other various things that trigger or make my illness more difficult.

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On my beautiful campus with my beautiful mother

 

It has been a blessing and a curse to move to a new town where no one knows anything about my medical problems. I am meeting tons of people, but it’s challenging not being able to explain certain things about myself. My first semester was brutal in terms of my social life. When I was not in class, I was in my room by myself. Most weekends, I would stay in my room from Thursday night to Monday afternoon when I had class. I felt like everyone was making friends and doing cool things and I was sitting in bed praying that my ovaries don’t fall off and wondering who would be there for me if they did.

If you take anything away from my story, let it be this:

 

There is a lot of invisibility in this world. Invisible illnesses, and other things that people may be going through that our eyes don’t see are more common than we want to believe. Please stop judging people for medical (physical or mental) issues that seem small. That kid that missed a month of school for “the flu” in 8th grade might actually be fighting a bigger battle.

 

Also, in a time where we are promoting a positive outward body image, especially for young girls, let’s consider the inside parts of your body as well. It’s time to stop shaming girls for wearing tank tops and shorts, but it’s also time to stop shaming them from speaking out about endometriosis.

And that is why my story needs to be shared. And talked about. And celebrated. I am done suffering in silence, and I am ready to take off the mask.

In His Grace,

JV