Seven things I’ve learned since being sick

1. Doctors are human. Since first going to the emergency room Feb. 4, naively believing that if  I pointed to a stabbing pain in my stomach I would be instantly diagnosed, I have had to claw my way around a medical system that has wrongly diagnosed me with things ranging from shingles to wearing the wrong bra.

I have gone through treatments that have done exactly nothing for me. I have had to go back to doctors over and over and over and over again because they were dismissing my symptoms and then I have had to find new doctors. Every specialist I have seen has diagnosed me with whatever they specialize in, regardless of how much if varies from my previous diagnosis. Every specialist appears to have been wrong. And even though they’re charging you and  your insurance company $300 for a 10 minute visit, they still often come off like you’re totally appropriate questions about your body are annoying.

2. Insurance companies are as bad as everyone says they are. They wrongly code things and charge me $400 for immediate care visits that should be $30. They apply everything to crazy high deductibles, and then after you meet that, they still apply things to your yearly limit. They don’t apply co-pays to anything. And they make it impossible to get things pre-approved. Try explaining to your neurologist that you can’t get your MRI pre-authorized because your insurance is based in Michigan, where your company headquarters is, but your hospital is based in Illinois and the two can’t seem to connect. I may have insurance, but I still have thousands of dollars of medical bills to pay from all this mess, and it’s only June 5.

3. Being in constant physical pain drains the life out of  you. It sucks your happiness from your soul. It makes you want to give up. And it all happens so much sooner than you’d expect. Before any of this happened, I would have thought that four months of daily physical pain was not that long. I would have assumed that leaning on my faith and my loved ones would get me through it. And I would have thought that I could have kept my hope.

I would have been wrong.

It takes about three weeks for the realization to set in that your life is changing, and after one month the depression starts. For me, April was a completely lost month. It was before they had me on a sleeping pill strong enough to handle the situation, and before I had any relief from the pain at all. I was suicidal. Looking back, I’m not sure what kept me going. And even today, sitting here, typing this, while stabbing pain shoots through my right ribs, it’s hard to tap into that thing that all of us have that keeps us breathing.

4. Priorities come into focus very quickly. As the daily pain took over my life, everything around me has started to slip through my fingers, and I’m only able to grab hold of the things I really need. There are small things, like folding laundry and doing the dishes on a daily basis that just don’t happen. Showering daily takes too much energy, and I have to hand over my car keys whenever I’m with anyone over 16 because driving hurts like a stab wound hurts.

But there are big things too. Suddenly I have found myself working from home three to four days a week for my full-time job. And with my youth ministry work, I’m only leading on Sundays. All the leadership meetings during the week, and the bible studies have disappeared from my life. And actually, sometimes even the Sunday classes are hard. There’s weeks when we just play a game the entire night for youth group. Or when I’m too sick to get to morning sunday school and my boyfriend has to lead at the last minute. Before I was in pain all the time, I never, ever would have ever dreamed of cutting back on my ministry work.

5. Cutting back on my ministry work, does not mean cutting back on God. This lesson had to be nailed into my head with a hammer. And I doubt that anything beyond constant stabbing pain in my ribs would have done it. But I have learned it regardless. I know now that scaling back at church is separate from scaling back on my faith. That pulling away from my responsibilities there is different from my relationship with God.

In the beginning I wondered if this whole thing was the Devil trying to get me to stop my work there. If “the enemy” saw all the good work that was going on with the youth group and he was pulling a Job on me, and taking away my health to see what would happen. I worried that if I gave in, I would be in a way giving into the Devil. But the pain has driven home another lesson for me. That God loves me for me and he knows my pain, and he understands. He understands when I can’t get out of bed to go to church because I feel like there’s a metal knife in my ribs. He, if no one else, understands when I need to pull away from my work there to focus on healing. And God, and probably God alone, truly feels how horrible it is to live with this constant pain.

6. We all need help on this little blue planet. I’m not so great at asking for help. And my chronic pain is such that when you see me, you might blink and miss it. You might think to yourself, “She looks pretty healthy to me.” And so, I have struggled to find help I desperately need right now. I have reached out in every way I know how, but that hasn’t always been enough.

I have been leaning like dead weight on my mom and my sister and my grandma and I am truly thankful for family that’s here for me when my life is so dark. They live two hours away, but it seems like my mom still folds all my laundry and my sister is always helping me out with the youth group and I’m pretty sure my grandma’s prayers are the reason I haven’t committed suicide yet. They are the trinity of love in my life right now and I only wish I could see them more often. They give me strength when they are near me, and it gives me hope to know that they would do anything in their power to make me better.

I have also depended on my brother Steve, who lives with me. He has brightened my spirits just by being the only other human being I see many days. And, because he has lived with me for a couple years, he has seen the before and after me, and knows how sick I truly am. He understands how many days I don’t leave the couch because of the pain. He knows how hard it is for me to get to get to the grocery store. And he never judges me for going days without showers.

I have also relied on my boyfriend Eric to talk to me all day on the phone, everyday. Especially on the days when I can’t leave the house. I have called him at three in the morning, crying in pain. I have vented to him about the craziness of the medical system, and he has sat with me at many, many doctors appointments. He has argued for more aggressive treatments on my behalf. And,  he has also done everything possible to try and take my mind off the situation with lots and lots and lots of greats dates. Maybe more important than any of that, he has stayed with me despite it all.

7. Sometimes prayer doesn’t work how you want it to. I have prayed to get better 1,943 times. I have prayed on my hands and knees. I have prayed while peeing on the toilet. I have prayed while sobbing in my bed, unable to find any position that is comfortable. I have said the Our Father during MRIs and Intercostal Nerve Block procedures. I have prayed while contemplating suicide in the car.

I have prayed and prayed and prayed and prayed and prayed. And I honestly don’t know anymore if God is listening. But I hope He is.

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Weight weight, don’t tell me.

Things people say about my weight that weird me out:

I bet you’re beating off the boys with a stick now.

Umm. Huh? First of all, no. No. I am not. I live in the suburbs, where every man is married with 2.5 kids and a upside down mortgage. Second of all, why wouldn’t I have been beating them off with a stick before?

Keep it up.

What the crap? I lost 54 pounds. How in the name of all that is caloric are you not satisfied? What if I just want to keep it down for a while. Gawd.

Oh. Wow. I didn’t recognize you.

Really? You didn’t? For real? That’s insane. I still have the same eyes, nose and pink purse. You need to look closer next time.

I bet you’ll be married in no time now.

Really? Is that all I needed. You’re probably right. I mean, heck I saw a nice young man at the Wal-Mart yesterday, I bet he’ll marry me, what with the fact that I lost weight and all. Give me a break.

You’re skinnier than me now. You suck.

Umm. In fact, you are the one who sucks. I worked my behind off for the last six months so I could weigh two pounds less than you and you’re JEALOUS? Why don’t you just give up soda for like a minute, lose your stupid two pounds, and we’ll call it all even.

Do you feel healthier?

What does that even mean? It’s like asking if someone feels “30” on their birthday. I feel like Crystal.

.

Uh. Dude. I LOST 54 POUNDS! I think that should at LEAST qualify me for a, “You look nice today.” How are you not going to say anything?

And now, one that someone said that was perfect.

Your thighs look smaller.

Courtesy of my little sister. Just out of the blue. All, “Your thighs look smaller.” Made me giddy for bathing suit season.

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how do you capture that?

taken while driving. do not try this at home.
taken while driving. do not try this at home.

im a bit obsessed with sunsets.

like pull out my camera from my purse, which is sitting on the passenger seat, while driving home, because the sunset is THAT amazing and i NEED to shoot a picture right this second like a crazy person on one of those “what not to do” auto insurance commercials. (note to geico: ya. that’s, umm. not true. i’ve NEVER done that. ever).

and i should confess, this is not the first time i’ve acted like an insane person out of my love for the perfect shot of the perfect sunset.

just last week i was driving along with my little sister monica to get groceries and a movie from Family Video, when I noted that the beams of light coming from the sun were just a little too awesome and the way the colors had lit of the sky were just a little too fantastic and vision of oranges and reds were just a little spectacular to pass up.

So i drove the poor girl like five miles out of town to a corn field, trying to find a good spot to capture the sight without buildings in the way. And then i pulled over and walked down half a block so i could get an angle that included a little weed because i wanted to frame the sun with plant life.

i left the poor girl in the car while i did this. and let’s just say she was in there for about 7 solid minutes before embarrassment ensued and she decided to successfully lure me back to the car by shouting that i had a text message.

i was super excited to show her my prize-worthy pictures, figuring i could use the opportunity to explain to her that it’s important to take time out and enjoy natural beauty like sunsets. i gasped as i flipped through them and beamed as i started my car toward town.

but im sure i did not capture the sunset’s beauty with my camera that night. because despite my armature plant-framing techniques, it is just REALLY hard get awesomeness like that in a photograph.

something about it just doesn’t capture.

that’s how i feel when i try to explain to people how much i really love my sister.

when i try to tell them that she’s amazing, and perfect and kind of like the 9-year-old self i wish i had been.

how when she and i talk, i feel like we share a brain. and how i can look over to her with a thought in my eyes and she can understand it. thoughts like “let’s change the channel” or “life is not ok. let’s fix it.”

how i had prayed for a sister since i was a wee one, and the 15-year wait it took for me to get her was totally worth it.

how i think she’s going to grow up to be a rock star, or a doctor, or president, because she can so totally be whatever she decides. and im not exaggerating one bit.

how she’s finally getting to the point where i can talk to her like an equal. and how actually, i’ve always talked to her like an equal because i knew she’d grab hold of my conversations and remember every, single, thing i said.

how i’d literally untie my shoes, take them off, and then remove my socks, so i could plant my bare feet on hot coals and proceed to walk across them for miles if she needed me to. and how when i pray for her every night i beg Jesus with my heart to watch out for her, and protect her, and to let her be as happy as possible as often as possible.

how i didn’t really know there was a love like this until i met her. such pure, complete love.

i often wonder how — be it in writing, or in conversations or in photographs — i could possibly ever explain that love to people. how i could possibly ever capture its essence.

but i’ve come to realize that it’s like a sunset. it just has to be experienced.

my sister
my sister
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