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Seven things I’ve learned since being sick

Published: June 5, 2013 / Updated: June 5, 2013 Crystal Life is hard sometimes, long

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.

Confessions of being in near constant pain.

April 16, 2013 Crystal Life is hard sometimes, long

I feel like I’m going to die all the time.

Actually, really, I feel like I want to die. All the time.

It really hurts that bad right now. This horrible, horrible pain in my right ribs that I’ve been dealing with for more than two months now.

There’s a saying about food poisoning. “At first you’re afraid you’re going to die. Then you’re afraid you won’t.”

I don’t have food poisoning though. I have nerve pain in my ribs. And I want to kill myself.

I think about it a lot.

The thoughts started during the long nights when I couldn’t sleep and even the blankets seemed to hurt my body and there was nobody to help me and breathing hurt. When breathing hurts you can’t help but go to dark places because literally every few seconds you have to think about the pain.

I have since found that two codeine helps with that though. It gives me the most crazy, vivid dreams, but it knocks me out. So I take it as early as I can. I sleep 11 hours a day because sleeping is the only time I don’t feel like someone is stabbing me.

Now though, I think about killing myself mostly while I’m driving.

That’s when it hurts the very most. It’s when I try not to take too many drugs because I’m operating heavy machinery. I haven’t worn the top of my seat belt since Feb. 3 because when it lays across my ribs it feels like it’s simultaneously suffocating me, and stabbing me. But even without the seatbelt, there’s something about sitting up right, and stopping abruptly multiple times, and dealing with traffic that makes me want to be dead.

I mentioned it to my boyfriend once in passing while I was in rush hour. “I want to kill myself,” I said. I just wanted to see how the words sounded in the air. But I could tell he did not want to hear them the second I said them. “You do not want to kill yourself,” he said matter of factly.

I don’t blame him. Nobody would want to hear those words from their love.

I promise you though, it hurts so much. I think it about it all the time. I’m ready to be dead. I really am. I’m at so much peace with it.

I don’t know if this means the pain is at a point that I should be taking myself to the emergency room, or if I should just take another codeine. I try to only take one at a time during the day.

I’m writing this post because I feel very alone. I feel like I’m in a dark place. And it hurts when I breathe.

When I’m at work, I can’t sit at my desk the whole day, so depending how many drugs I’m on and how good I’m feeling and how much I did the day before, I take breaks throughout the day to literally lay on the floor by my chair on my stomach.

I push my chair aside, and lie face down on the thin carpet by my desk. Usually, I use my coat as a sort of pillow.

I try not to cry at work though because it freaks people out.

Standing used to be more comfortable than sitting, but now, really, the only comfortable thing is taking a gabapentin, two codeine and going to sleep.

I know that everyone wants me to be back to my old self. But all I can say is that I promise, they can’t possibly want it more than I do.

I’m not going to kill myself. Not today.

I heard this story on NPR on after-death experiences. And it was about this doctor or something who studied all these people who had died and then come back to life.

He said every single one of them had felt a warm light or something after they died. That all of them basically went to Heaven. All of them except the ones who had attempted suicide. The things those people saw were too awful for words.

And that’s not to say people who kill themselves can’t go to Heaven. That’s not really for me to judge.

But just to be safe, I’m not going kill myself. Not today.

I’m just reaching out. Trying to tell you something. Trying to say that it hurts really bad. And that if you’re in pain too, and you’re in a really dark place. You’re not alone.

That time I had an intercostal nerve block

Published: April 13, 2013 / Updated: April 13, 2013 Crystal humor, long

I think that I might, finally, kind of, sort, maybe, cautiously optimistically, might be, feeling, a little bit better.

Like not completely healed go out and do jumping jacks and then yoga and then run a marathon or anything. But maybe make it through a whole day without codeine. Or maybe just one codeine.

I’m very scared to write those words.

To put them out into the ether. To make them real. To jinx things.

The pain has just lasted so. so. long.

Since Feb. 4 it has felt like someone has been stabbing in my lower right rib. Or, well, sometimes it has felt like someone has just hit me in the ribs with a baseball bat. And other times it felt like someone dropped a cinder block on top of my chest. It really just depended on what time of day you asked me.

My latest, and hopefully final, diagnosis is “nerve pain related to scar tissue from my gall bladder surgery from five years ago.”

Which I didn’t even know what a thing until Monday. And truthfully I’m kind of really mad it wasn’t listed as a possible side effect when I had the stupid thing taken out in ’08. Not that I would have not had it taken it out, but it would have been nice to know that someday, should I feel like someone was stabbing me with an imaginary knife, it could have been related. You know?

Who am I kidding? It was five freaking years ago. It probably was listed as a side effect and I just have no memory of it whatsoever.

Anyway, on Thursday, afternoon I had a small procedure called an intercostal nerve block, which is what I’m hoping has finally made so that maybe I only need one codeine to get through the day.

Well the doctors call it a “small procedure.” I call it, “‘That crazy thing they did to me that I am so, so glad I had my mom and my grandma come all the out from an hour away to be with me because it was scary as crap’ procedure.”

First of all, they told me in advance that I would get to be put to sleep for the thing, but then when I got there, they were all, “Well we need to be able to converse with you in case someone goes wrong, so we’re only going to give you something to help you relax and some local anesthesia.”

And I have it on good authority from my good friend John Rowley, who had the same procedure multiple times, that they were lying to me, because he got to be put to sleep every time. But whatever. Now I can tell you nice people all about it.

Step one, the IV:

They gave me an IV. I almost fainted because I was so nervous and I was watching the nurse (whose name was Sandy, which made me feel more comfortable because I really, really love my Aunt Sandy) do the whole thing and she couldn’t get it to work and she was talking to me and the blood was going in and out and in and out and in and out of my arm and then all of a sudden the blood drained from my face. And then the nurse, was all, “Umm, are you going to pass out?” And I was like, “I don’t think so.” But she’s a professional and she could see that I was wobbling. So after she got the IV situated, she got a wheelchair to take me down to the procedure room, instead of having me walk, just to be safe.

Step two, going to the procedure room:

They had me lay on the bed stomach down in the procedure room. They wrapped the hospital gown up around my head but left my personal yoga pants on. Considering the fact that I’ve been in near constant pain for more than two months and haven’t washed those things in at least a week, that probably wasn’t the hospital’s most sanitary decision of the year, but it was their most comfortable.

Then, they gave me whatever drug they give you that makes you relax without exactly putting you to sleep. It’s an odd phenomenon to be awake in a procedure room. And this was the first time I ever experienced it.

The doctors and nurses are busy getting everything ready around you, and they almost act as if you’re an inanimate object. Like the doctor would tell the nurse, “Yes, move her up on the table because I’ll need her back to be flat.” And then the nurse would go to move me, but she wouldn’t really talk to me about it, but would just go to move me. And, at another point, someone in the room took a purple marker and freely drew on the right side of my back to mark where they needed to do stuff. Like I was a windshield they were replacing.

Step three, the local anaesthesia:

Just as I had finally relaxed enough to kind of fall asleep, someone woke me up to tell me they were about to inject the local anaesthesia. Which I would say was a stupid time to wake me up, except that it would have worse if the injection had woken me up instead.

When they injected it, the shots burned really bad and I didn’t realized there would be three of them. Except in my drugged up stated I couldn’t quite articulate that, so I just let out a long moan. Like, “uggugugugugugugugaaaa.” And then, in my head, I realized I needed to ask if there were going to be three intercostal nerve block injections, because I had been under the impression that there was going to be one, but I couldn’t figure out how to articulate it. So I think I said something along the lines of, “Three shot of other one?” And the doctor said, “What?” And I was like “Will I get three shots of the other one?” And they said, “Yes, but it won’t hurt, you’ll just feel pressure.” Which I suppose was technically true.

Step four, the actual intercostal nerve block injection:

I have no idea what the heck they did when they injected the stuff for the nerve block because I was stomach down, so all I can tell you is what I felt and what I heard.

They did the whole thing under X-Ray, which going in I had assumed meant they would be under a live X-Ray machine. But actually, it meant that they had to keep taking pictures with the X-Ray machine and then posting them on the wall in front of the doctors. This lead to the doctor and the resident saying, “Picture” over and over and over and over and over to the technician during the procedure. It’s probably my most vivid memory. I think if I really wanted to I could have tilted my head up and seen the pictures, but I didn’t want to risk moving at the wrong time and then having the doctor miss and puncture my lung.

When they injected whatever they were injecting I did indeed feel the aforementioned pressure. Although it wasn’t so much “pressure” as it was a feeling of someone jabbing a rusty spoon into my back and moving it around for a really long time and then yanking out.

Obviously, I responded, very clearly, in my drugged up state, with, “uggugugugugugugugaaaa.” And the doctor said, “Does that hurt?” And I said, “No. Just pressure.” And he said. “Good.”

And then, what seemed like 12 rusty spoons later, they were finally done.

Step five, waiting for the drugs to wear off:

After that, the doctors got the heck out of there because it was like 4 p.m. or whatever, but Nurse Sandy waited with me for about a half hour for the drugs to wear off.

I remember that my feet were really cold and I basically feel in and out of a light sleep. The local anaesthesia made it so the injection site and my ribs felt pretty great.

Then, after I was at a point where I could stand up, she walked me over to another room where I met up with my mom, my grandma and my boyfriend. She took the IV out, gave me some orange juice, and some crackers, which was very exciting because I hadn’t been allowed to eat since the day before. Then, they told me that the injection might make my nerve pain worse for a couple days before it got better, had my mom sign me out, told me not to make any legal decisions today and sent me on my way.

Step six, the day after sucked:

Holy cow, when they said my pain was going to suck they day after, they meant by 9 p.m that night. My boyfriend called to say good-night and accidentally woke me up, and by that point everything had worn off and I woke up feeling like I was going to either die or kill myself. I couldn’t even talk because I was crying too much. So I just hung with him without even really talking and then I went back to sleep.

Friday was pretty much more of that. The injection site hurt. My ribs hurt. I thought I was going to die. I talked to John Rowley who told me this is all very normal. He also told me that the fact that they already did an intercostal nerve block means they’re taking my pain very seriously and that it took him six months to get to the point I’m at. And that I should wake up feeling better Saturday and that by Sunday I should be feeling pretty awesome.

Step seven, it’s Saturday morning:

I haven’t actually done too much today, but I’m hopeful. I think, I might, finally, kind of, sort, maybe, cautiously optimistically, might be, feeling, a little bit better. Fingers crossed.