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.
