Pain

Some thoughts about my drugs.

I’m having a pretty good day.

And by that, I mean, a pretty good “pain” day. That’s how my whole life is defined now.

Yesterday sucked though.

Yesterday I was in agony.

I think maybe it was because my birthday on Friday and my boyfriend came out to visit, and my whole family took me to Olive Garden for dinner, and maybe it was all too much for me and I was paying for it on Saturday. Or, maybe it was the weather. Or maybe it was because the fan in the living room was blowing at some crazy angle.

Or maybe God was just p*ssed off at me.

Whatever the reason, the pain was awful, and so, I ended up taking extra hydrocodone.

I’m supposed to take “one every six hours,” but I’ve been taking the stuff for months now, and many, many times “one every six hours” has the same effect as an M&M would.

Sometimes that means I end up taking “one every four hours.” Other times that means I end up taking “two every six hours.”

But then, every couple of days, I have to sit down and count out how many days I have left until I can get a refill, and then count out how many pills I have left and divide the two and start rationing it out.

As of right now, I have about three pills a day to get me to my next refill.

I already know that’s not going to be enough.

Here’s the thing, it’s not that I used to judge people who used excessive amounts of painkillers in the past. It’s more that, before I got sick, I just never even thought about them.

But now. Now, I sit down on Sunday mornings, open the orange prescription bottle, dump out the pile of powdery white pills, and count out each individual one, and by extension calculate how much pain I will have to endure over the next three weeks.

I already know that there is no way I can get through the next three weeks with three pills a day.

My plan right now involves one part prayer, and two parts new doctor, who I see Sept. 10.

But, my experience with medical professionals thus far though has been, “Oh well.” As in, “You better find a way, because as long as you’re not bleeding out, it’s not our problem.”

But that’s the thing, it really, really does feel like someone is stabbing me with a butcher knife.

I have endured the worst pain in my entire life over the last six months.

Pain that makes me consider suicide on a daily basis. As in, I seriously plan out how I can kill myself. As in, I was seeing a psychiatrist who specializes in helping people who deal with chronic pain because I was fantasizing about driving my car off the road or swallowing all my pills before I went to bed at night.

I am in that much pain on a regular basis. And I am not exaggerating when I tell that you that there are things in this world worse than death.

But because I am not visually bleeding out, because my blood work comes back normal, because nothing ever shows up on any MRIs, I get 120 hydrocodone a month, and no more.

If someone rushed into the ER with a gushing stab wound, they would never be denied the pain relief they need.

Or maybe they would. But that would be tragic.

Because pain eats at you. It messes with your head. And it changes you so much faster than you think it will.

And there is a pill out there that can take my pain away. And I don’t want to take it so I can get high. I don’t want to take it so I can feel like I don’t have any troubles, or like I’m floating or whatever.

I want to take it so that I can get some relief from the metal claw digging into my ribs and maybe think clearly enough to see into tomorrow and remember that I do want to keep on living.

It’s so, so easy to sit on the outside of pain and judge people though.

It’s easy to say things like,

“Well, you can’t just depend on the pain pills, because you’ll end up building a up a tolerance to them, and then where will you be?”

Or,

“You need to take the number of pills the doctor tells you to take because that’s what the doctor says and that must be right and he must know exactly how many pills it will take to take your pain away without giving you a drug addiction.”

But that’s all bullsh*t when you’re in so much pain you want to kill yourself.

When you seriously want to end your life because you cannot handle the amount of agony that has engulfed your right ribs, the very last thing you give a crap about is the possibility that “two hydrocodone every six hours” instead of “one hydrocodone every six hours” might lead you to a life of pain pill addiction.

Or maybe you are different.

Maybe you would have a clear head and think differently in that situation, and maybe you would be able to endure hours and hours of the worst pain you’ve ever experienced, while a bottle of hydrocodone pills that could give you the relief you need were sitting right there on your dresser, and maybe you wouldn’t reach for them.

But I doubt it.

Pain Pill Bottles

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Surviving the move: An ER visit, a shot of dilaudid and some steroids

So, ya, the move was pretty stressful.

I mean, I didn’t really think I was getting stressed out or anything, but I guess my body was stressed because on Friday night, just 12 hours before I was supposed to pick up the U-Haul, my “intercostal neuralgia” pain was seriously the worst it has ever been ever.

I’m talking stabbing pain that felt like a machete inside my right ribs, mixed with the feeling of being dropped off the side of a moving train and landing on a field of jagged rocks.

Horrible, horrible pain.

I was laying in my bed at about 10 p.m., trying to figure out how many hydrocodone I could take without running out before I was due for a refill, when I realized that all I really wanted to do was kill myself.

And then I started thinking that the pain that I was in, right then, was literally Hell.

That all I wanted it to do was end it. And that if dying was the only option, I was ok with that. In fact, I was sort of in favor of that.

So, I told my mom and my brother that I should probably go to the emergency room. And then I said  many, many swear words.

Pain does that to you.

They took me to some ER in Joliet.

I refused to go to the ER right by my house, because the doctor there was the one who originally misdiagnosed me with an ulcer and wasted a month of my life telling me I couldn’t eat tomatoes and giving me the wrong treatments, and what with all the pain I was currently experiencing, I thought I might punch him in the face if I saw him.

So we drove about 20 minutes south to go to the Joliet hospital.

As soon as I got there, they hooked me up with a wheelchair, which was awesome because standing up was killing me.

When they called me in though, they took me to some weird entrance exam area, where there was a whole bunch of patients sitting by computers getting their blood pressure checked and being asked how much they weighed.

I was in too much pain to fight them on that question, but I overheard some other lady tell the nurse, “Enough.” As in, “How much do you weight?” “Enough.”

And then the nurse was all, “I’m really sorry, but we need to know exactly how much you weight because we’re going to give you an antibiotic treatment, and the dosage is going to be based on your weight.”

And she was all, “Well I’m going not to tell you while he’s in the room.” I can only assume it was her boyfriend or her husband. But I suppose it could have been her son. Or maybe even her dad. Who knows.

And then the other nurse was all, “Why don’t you just write it down on a piece of paper and hand it to us?”

And then she grumbled and something else happened and then my pain continued to try and kill me and then somehow they ended up talking about her weight into kilograms and so I never did find out how much the lady weighed because MATH.

Anyway, after the initial check in, they didn’t even bother to put me in a room, they just had a doctor come over and examine me right there.

And she only sort of pulled the curtain back half way before she asked me to lift up my shirt so she could see my ribs.

I was in too much pain to care who I was flashing though.

I screamed in agony when she touched me. I’m pretty sure it was that and my large blue and purple medical binder full of my health information from the last six months that convinced her to give me a shot of dilaudid — a pain reliever the internet says is 6-8 times stronger than morphine.

Yes, it burned going in, but let me just tell you that shot was the best thing to happen to me since I first ate Taco Bell.

Seriously. I have not been that pain free since ever. Really, I cannot remember ever being that pain free.

I want that life back.

I know I had it at one point.

I have faint memories of living and doing things where I could function without horrible pain dominating everything I did all the time, but it’s been so, so long.

I was told the shot would last about 8 hours, but I got a solid 10 out of it.

When it wore off though, I thought I was going to die again.

It’s crazy how quickly the suicidal thoughts come back.

Seriously. It takes about three minutes of pure agony before I’m ready to quit life.

The pain is just insane, and nobody should ever have to endure such a thing. I took two hydrocodone and cried for the 45 minutes it took for them to kick in.

And then I prayed that Walgreens would fill the hydrocodone prescription I had in my wallet a day early.

And they did. That is how I know there is a God.

I used that and the effects of a 20-day low-dose steroid pack my neurologist had prescribed me over the phone Friday afternoon to make it through moving day.

But actually, I just ended up carrying things like pillows and blankets to the car every once in a while, and then feeling the pain of death cover my body whenever my medications would wear off. And then I would suddenly lay down wherever I happened to be, and wait for another dose of medications to kick in.

I spent a bunch of time on the kitchen floor and on the grass next to the U-Haul truck.

The ER doctor told me I need to have a conversation with my pain specialist about going on stronger medications, except of course, my former pain specialist was a horrible, horrible person, and I don’t have a new one yet.

So I’m just taking hydrocodone so that I can live through each day. And I’m relying on a few more than the 4 a day I’m supposed to take.

You can judge me all you want, but when you feel like your ribs are trying to stab you in your heart, you do what you gotta do.

Because it’s either that, or kill myself.

On the upside, we did end up making it to Byron. Sometime around 10 p.m. Saturday night.

At least it didn’t rain. Moving in the rain always sucks.

Uhaul

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Life as a former youth leader.

It’s been three days since my last Sunday as youth leader at Crossroads of Faith United Methodist Church.

I find myself spending all my free time staring at group photos of the youth, and watching this year’s mission trip video. 

I woke up this morning to a long wall post from one of my favorite girls, Shelby.

“I think for the first time since Sunday it’s really sinking in that a big part of my life is changing and it hurts,” she wrote.

It does hurt.

It sucks actually.

As many of you know, I had to resign because of my health issues.

My current diagnosis is intercostal neuralgia, and I’m always careful to say “current diagnosis” because I’ve had five diagnoses since I’ve been sick and I feel like it can change at any second.

In short, I wake up everyday feeling like I’m being stabbed in my right side with a butcher knife. And I walk around feeling like someone just broke all my ribs with a baseball bat. I’m also doped up on Hydrocodone all day, everyday.

And holding down that part-time job at the church and my full-time job as managing editor of Candy Industry magazine was just too much for me.

Being sick means I feel almost a morbid sense of peace about knowing I don’t have the weight of the youth leader job on my shoulders any longer.

I know that getting out of bed to get to church on Sunday morning felt like getting up after being hit by a car some weeks. And I know that the stress of running that group was chipping away at every drop of strength I had inside of me.

But I love those kids. So much.

And I feel as though I’m walking away from a part of my identity.

I kept telling the kids that, “I’m not dying.” That they could still call me, text me, Facebook me.

But I know that over time, the communication will fade. That the phone calls will get further and further between. And that I’ll be lucky if I even see one of them ever again.

I’m old enough to know that the end of things really is the end of things sometimes. And this is the end of my time as youth leader at Crossroads of Faith United Methodist Church.

A few months ago, when I first breathed into the air that I was even considering leaving, my spiritual mentor Lynn was trying to counsel me through the decision. And as she sat next to me on the couch, she looked into my eyes and said, “If you do leave, you can walk away knowing you did a fantastic job.”

I keep going back to that. Hoping with all my heart it’s true. That she wasn’t just saying it. That I did all I could while I was there.

But even that doesn’t make the change any easier.

And of course, Shelby put it best,

“I almost feel like it’s a book. Like I was on this one amazing chapter that was so good. Then, I turned the page, and it’s a new chapter and I’m scared because I HAVE to, in a way, start ‘reading’ or living this chapter and I don’t know what’s going to happen. All I know is the last three years of my life, having you a part of them — with your kindness and helpfulness and the way you were so understanding — was amazing. Everything that you did for us was something that a 100 thank-you’s couldn’t tell you how thankful I am.”

Right back at ya girl. Right. Back. At ya.

CrystalAndShelby

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