Urine-ologist With Mom

Today I had another slew of appointments, one of them being with my urologist at Duke South. It was a pretty uneventful appointment, but I am incredibly frustrated with the state of my urological health…

I have my THIRD infection in two months! The first two were complicated infections with uncommon strains of bacteria, and they really kicked my butt. This most recent culture grew Klebsiella pneumoniae which is a pretty common culprit of UTIs…but it is a difficult bacteria to get rid of nonetheless.

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I honestly do not remember what it feels like to not have a UTI! My bladder and kidneys are constantly hurting, with pain ranging from slight soreness to knock-you-to-the-floor sharpness.

My urologist reassured me today that I am doing nothing wrong to cause these problems.

These infections are a result of EDS causing my bladder to be ‘too stretchy’ and dysautonomia affecting nerve signals to my smooth muscles. She also said that prednisone is likely complicating things as it is an immunosuppressant.

As far as managing my condition(s) goes (in this case, taking prophylactic antibiotics and self-cathing), I am doing everything right. I suppose knowing that makes me feel a little better…but in a way, the fact that this is not my fault increases my frustration because there isn’t anything I can do to improve the situation… agh.

On a more positive note, appointments with mom are always an adventure! She’s truly a character, that one. Here’s a video of some post-appointment shenanigans with my partner in crime.. 🙂 Love this crazy woman so much! ❤

I Understand

I understand why you lied

Your story sent angry mobs after me

Death threats, mental institutions, hatred, and doubt

But I do not regret defending you

A missing patch hair is easier to grasp

than a broken soul and a crushed sense of self

Years of abuse and chaos had taken everything

And I get it, I truly do

I know right now you feel no guilt for your actions

Nor their repercussions

But if one day you do, just know:

While it still hurts and haunts me at night

Brelyn, I understand

I Cannot Help But Feel Cautiously Hopeful…

I had a great time with my youngest sister yesterday!  We haven’t gotten to spend much quality time together since my family was torn apart in 2012…but recently we’ve been bonding– amidst and despite our family’s dysfunction– and I can’t even tell you how much its meant to me. We had a really cool conversation around 2am. It started when she asked about my feeding tube. Not in an “ew gross” or otherwise insulting way, but she genuinely wanted to know what “happened” and why I went from being a healthy, normal kid to a sick teen/adult. She asked about the ins and outs of Ehlers-Danlos Syndrome and how it affected/will continue to affect my life. The whole conversation, never once did she make a judgmental remark or tell me to stop talking. Despite living with me for extended periods since I became sick, she honestly did not know much of anything about my illnesses until that point, and it was truly a sweet and special moment for me…although that may sound weird to some. Prior to recent weeks she and my other sister Kerian have had nothing but nasty, degrading comments, spoken with the intent to hurt me. And they’ve succeeded. Both can be incredibly mean-hearted and they know how to be manipulative and hit a person where it hurts (especially Keri). But this conversation with Bre tonight, plus all the fun we’ve had lately talking and joking, driving around, swinging at the park, watching Supernatural, and just being sisters has my heart so full: I cannot help but feel cautiously hopeful. I find myself praying and pleading with God that this lasts. Regardless, I am thankful for these past weeks and I love my lil ginger sis.. ❤

Nobody Wins When Everyone’s Losing

You know those songs that just capture your attention, reach into the depths of your soul & hit you at your core?  Yes, that was a very dramatic introduction– I’m aware. 😉 But this particular song, “Not Meant To Be” by Theory Of A Deadman is definitely one of those songs for Keri, Bre & I. When everything was in a chaotic spiral & we would find ourselves so far in Borderland we didn’t know that we’d ever again see the light, there wasn’t much that could help us (or, anyone caught in the path of the storm). But this song– one step forward, two steps back– every single word is/was SO relatable & relevant to our situation. And I’m not sure if it’s that it empowered us or simply validated our feelings, but somehow, singing it always made it easier to breathe.

It’s never enough to say I’m sorry
It’s never enough to say I care
But I’m caught between what you wanted from me
And knowing that if I give that to you
I might just disappear

Nobody wins when everyone’s losing…

[Chorus:]
It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, I can’t change your mind
I know it’s like trying to turn around on a one-way street
I can’t give you what you want
And it’s killing me
And I, I’m starting to see
Maybe we’re not meant to be

It’s never enough to say I love you
No, it’s never enough to say I try
It’s hard to believe
That’s theres no way out for you and me
And it seems to be the story of our lives

Nobody wins when everyone’s losing…

[Chorus]

There’s still time to turn this around
You could be building this up instead of tearing it down
But I keep thinking
Maybe it’s too late

[Chorus]

It’s like one step forward and two steps back
No matter what I do, you’re always mad
And I, baby I’m sorry to see
Maybe we’re not meant to be…

And If Not, He Is Still Good…

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Things have been really, really hard lately. Life has thrown me & my family a lot of curveballs, physically, mentally, emotionally & financially. I feel like each day is a battle & I’m constantly struggling to simply keep my head above water. But even through the storm, God’s grace & mercy is unyielding. He sees & loves me where I am, & no matter what, He is still good.. ❤

October 18th

One thing that used to frustrate us the most about our mother was her obsession and hang-up over dates.  I never quite understood why, for example, we were expected to behave a certain way on the anniversary of one’s death.  Don’t we miss the person the same that day as we did the day before?  As we will the day after?

However, October 18th is always a day that will always elicit a moment of somber reflection.

On this day 4 years ago, my sisters and I became wards of the state of North Carolina.  That crisp October morning, we were summoned to a meeting that consisted of our parents, grandparents, family friends, social workers, counselors, psychiatrists, and school principals.

We entered that room with fears, doubts, and heartbreak, sure…but we went as a single unit:

Hand-in-hand.

Three as one.

United by a lifetime of hurt and violent chaos, but also by a fervent hope that somehow always managed to sing its quiet song amidst the storms we weathered…

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October 18, 2012

But we left that meeting completely different people.

We were forced on yet another dark and winding path, but unlike the roads we had travelled in the past, this one split in three.  We were all forced to navigate alone- stumbling along scared and blind- with no hope of getting back to where we started and no promise of an end.

We would never again be the same…