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Monthly Archives: June 2014

“The pathway is broken and the signs are unclear and I don’t know the reasons why you brought me here. But just because you love me the way that You do, I’m gonna walk through the valley if you want me to…”

I was thirteen years old, an 8th grader at Pease Middle School, and it was spring. I remember because it was that time of year that the P.E. teacher started letting us run laps outside and we all tried ways of getting out of it. I was in the girls locker room getting dressed when I was hit by a truck of pain. I sat down, sure I was about to pass out. Elizabeth, a girl who always had perfect bangs and doused herself in Exclamation perfume, looked at me and said “I get cramps too!” It was a bonding moment.

The problem was, these weren’t just cramps. These were my insides being ripped apart by a thousand tiny chainsaws. I limped over to the coach and lied and said I had hurt my ankle. (The teacher was a guy, no way I was telling him nothin’ bout no cramps) He eyed me suspiciously but let me sit out. I think he caught on when I forgot which ankle was supposed to be hurt.

And here I am, 23 years later, and I am still sitting out of gym, trying to deal with the pain and not let my teacher know. Now it has a name- Endometriosis. I was officially diagnosed after a laparoscopy when I was 27 years old. Since then, I have had three other surgeries, hormone treatments, countless medications, and a long list of holistic treatments to try to control the progression of the disease.

Disease.

One thing I have realized in the last year is that part of what happens with chronic conditions is that you don’t feel like you have a disease, you feel diseased. And those are completely different.

On average, it takes a woman 5-10 years to be diagnosed with endometriosis. This is due to many reasons, but one of the main reasons I’ve personally encountered is a lack of education on what endometriosis actually is, and dismissal of women’s reporting of their symptoms. One doctor figuratively patted me on the head when I was 21 and told me that I was way too young to have anything seriously wrong with me, and that all women have cramps.

“All women have cramps”- this is the sentence that smacks the hand over our mouths and tells us to buck up and quit complaining.

In high school, I missed days of school because of pain and bleeding. I remember wanting to try out for a play so badly, but I knew that the pain could happen at any time, and I couldn’t take the chance that it would happen during an audition or rehearsals. I remember classes where I would watch the clock, just waiting and praying for time to move faster so I could just go home. I auditioned for All State Choir my senior year, and almost had to stop in the middle of my audition because I was sure I would pass out from pain. I thought it was normal. I wasn’t TRYING to be stoic or stubborn. I just…thought it was normal.

I was introduced to shame at seventeen, when I visited a gynecologist for the first time and he prescribed birth control pills for the pain I described. He asked me if I had a boyfriend and I said yes. He said “well, these will help with that situation too!” I was mortified and told him that I was not having sex. He rolled his eyes. I didn’t fill the script. It was the first time I felt embarrassed to be in pain, like I had done something wrong, like it was my fault.

So why do I write about it now? Well, it’s not because I have magically gotten over any embarrassment or shame or the feeling of being diseased. I write about it for a few reasons.

It comes back. This is a chronic condition that is managed, not cured. I had a complete hysterectomy three years ago, and was hoping for a long reprieve. It lasted two years. For the last year, I have been trying to treat the low-level back pain that occasionally flares into serious pain. In the last few months, I have been getting recurrences of abdominal pain as well. I can read the writing on the wall. I visited several back doctors, thinking maybe there was another cause to the pain. One doctor was a nut job who told me to crush up muscle relaxers and eat the powder throughout the day. The other doctor sent me to physical therapy and told me he wanted me to take medication continuously to let my body rest and heal. After a few months, the physical therapist told me that she didn’t think I needed PT and that she didn’t think my problem was muscular or spinal. I consulted the doctor and told him that I was frustrated that he was prescribing this medicine, even when I didn’t need it and that he still couldn’t tell me if anything was wrong with my back. He snapped at me that if I was his patient, I was required to fill all medicines and take them according to his instructions or he wouldn’t see me. He told that eventually, I would have to have surgery on my back. Obviously, I didn’t return to his clinic. After that I just tried some diet changes, added some yoga and stretching, and…managed. But this month has been rough, and I gave in and saw my Obgyn again. It’s interfered with life- planning my days, how much I am able to accomplish, physical stamina…and writing. Endometriosis can mess with your immune system and cause fatigue as well, and I definitely have felt that. There is a weariness that I push through most days, and some days I give into.

I write about it because I still have to convince myself that having endometriosis is not a character flaw. It has forced me to confront my people pleasing habits- I hate feeling misunderstood, and there is a lot of misunderstanding in this disease. It is hard for me to accept that I might go to an ER someday and be seen as a hysterical female, or worse, a suburbanite drug dealer. It is hard for me to accept that I can’t control that. I have been forced to let go of the fact that there will be family, friends, and doctors who dismiss me. It has forced me to confront my theology of suffering.

But the main reason I write about it, the reason I chose to be open about something so personal, is this- it’s because when I finally read stories of women who can’t wear jeans for an entire day because the pressure on their stomach cause nausea, I cried.

I’m not the only one. 

Because I read about women who search for years for answers and help and who are dismissed and patronized.

I’m not the only one.

Because I read about making the hard choices about pain medicine, hormone treatment and surgeries.

I’m not the only one. 

This is precious to me. This is comfort from Him and I am thankful. And I write so that someone will know they are not the only one.

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http://endometriosis.org

Email me at brandy.followingbutterflies@yahoo.com

Follow me on Twitter @brandyb77

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“When you love you walk on the water, just don’t stumble on the waves, we all want to go there somethin’ awful but to stand there it takes some grace ’cause oh, we are not as strong as we think we are…”

Maybe you’re like me.

Take a deep breath. Let the relief wash over you. It’s over.

Father’s Day.

Maybe you’re like me. Maybe Father’s Day is this mixed bag of wanting to love and honor the man you raise children with, and gingerly protecting your heart from the arrows of praise flying around you about other people’s dads. Maybe you too avoid social media, restaurants, and even church on that day, because it’s all just a little too much. Maybe you also think you are ok, only to find that while it may take a bit more prodding to produce pain, the wounds to your heart are still just as present.

Maybe you already know that they just don’t make a card for the way you feel.

It’s funny how we see ourselves, so resilient and strong. We speak of “getting over” relational pain, and “moving on” from past hurts, as though we are simply describing taking antibiotics for an infection. But really, heartbreak is a chronic condition to be managed, not cured. I wonder how many fathers would leave their families if we told them “by leaving your child, you are giving them diabetes. They will always have it, and it will cause significant life changes, and perhaps even death. It will affect them negatively for the rest of their life”, if more fathers would pause before bailing?

My heart wants to scream “YOU DON’T AFFECT ME”, but my heart whispers “You affect me every day”.  Even now, writing this makes me feel small and vulnerable. I used to feel guilt and shame any time I felt any emotion about the absence of my father, as though I was telling God that He wasn’t enough for me. I covered that pain in big theology words like forgiveness, sanctification, and suffering in joy. The problem was, I never allowed myself to suffer. And so my joy was swallowed up too.

Maybe you’re nodding your head.

I’ve said this before, that this is my favorite verse in the Bible- “The Lord is like a Father to His children, tender and compassionate to those who fear Him. For He knows how weak we are, He remembers that we are only dust.“- Psalm 103:13-14  I love this for so many reasons, but one of the biggest reasons is that it shatters my idea that I annoy God with my suffering. That He’s up in heaven just tapping his foot and waiting for me to get over it already! That He rolls His eyes when I avert mine from scenes of grown women and their fathers.

Here is what I know. Growing up without a father sucks. Am I better off without his influence, I don’t know, but I know that not having a father is not what He intended for me. I know that I am 36 and I still expect abandonment from others. I know that there are issues and questions I have that I don’t want to go to my friends with, I want to go to a father with. I know that I don’t trust others easily. I know that I mourn that Wes never had to have the nervous talk about marrying me with anyone. I know that my children will continue to ask more and more questions. I know that it doesn’t take much to put me back in that child’s place, watching him walk away. I know that I don’t struggle with jealousy or envy much, except when I watch those women whose eyes light up when they talk about their dads.

Here’s what I know. Jesus IS enough. Enough to handle my happiness AND sorrow. Strong enough to deal with my anger. Tender enough to lift my head. Patient enough to walk with me through my trust issues and faithful enough to remind me of the truth when lies feel safe. Kind enough to not force me to process all my pain at once, and gentle enough to allow me time to slowly peel back the layers of pain. He is enough.

Maybe you’re like me.

 

 

Email me at brandy.followingbutterflies.@yahoo.com

Follow me on Twitter @brandyb77

 

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