A year of living in pain

The thing about being in pain every day is that people expect you to get used to it.

You never get used to it.

It’s been exactly one year since I woke up with a pain on my right side. It was Super Bowl Sunday, and I thought it was strange, but I went about my day. The following morning, instead of going to work, I made a u-turn and headed to the closest ER.

As a card-carrying member of Blue Cross, Blue Shield, I was given the $20,000-overnight stay, complete with a quick camera down my throat procedure, and a CT scan with IV dye that made me vomit right there on the CT bed. Is that even what it’s called? A CT bed? Whatever it was, I threw up right there on it, and then slid right back under the CT camera so that they could take some pictures, charge me and Blue Cross thousands of dollars and then tell me nothing was wrong.

Nothing at all.

Well, the camera in my throat did show a small ulcer in my intestines. That was probably it. That was probably what was causing the horrific pain. I was sent on my way with prescription strength antacid, and strict instructions not to eat tomatoes for three months.

A few weeks went by and I still felt like I was dying every day, so I went back to see the doctor. She told me to just “calm down.” Suggested I was just “stressing myself out.”

Two days later, I was right there, about to fall off the cliff into the valley of suicidal thoughts, where I would eventually swim around like it was a hot tub for about eight months. But, I hadn’t fallen in yet, and I was hoping that maybe I could still get back on solid ground, so I went to see another doctor.

He was too scared to give me anything to actually help the situation because: druggies.

So he sent me to a pain specialist, who I couldn’t see for three days. By the time I met the guy I was already thinking about slitting my wrists to escape the pain that had started to consume my life.

He told me I probably had a magical form of shingles — the kind of shingles without any other signs or any sort of rash. He gave me drugs that didn’t help, and sent me on my way.

I cried myself to sleep. Every day. I started missing one day of work a week. Then two. Then two and a half. Then three. Then suddenly I was trying to get only the very bare minimum done every day.

Then, I went to immediate care.

The doctor handed me a steroid pack without even telling me it was a steroid pack. She also gave me some hydrocodone. Weak hydrocodone. Weak enough that it would take me another two months to figure out that I needed about four of those pills to get any sort of relief for four hours. But at least she was trying.

I cut out everything in my life that wasn’t absolutely necessary.

Showers became an every other day, or every third day thing. If my boyfriend wanted to see me, he had to hang out in my living room. My part-time job as a youth leader went from a 40-hour-a-week, love affair with my passion to four hours a week and playing games during every youth group meeting.

When I had to do things, I took all the hydrocodone I could get my hands on to get through it. Sometimes that meant driving when I shouldn’t have been driving. Many times that meant working when I shouldn’t have been working.

When I did get myself to the office, I would spend half the time laying on the floor in sheer agony. I would cry. I would wonder how I was going to get through the next five minutes, much less the next five hours.

Then, on the way home, I would fantasize about driving my car into a semi-truck the way most people fantasize about going to Hawaii.

I begged my mom to come visit every single weekend. I couldn’t do my laundry, I couldn’t do my dishes. I thought about killing myself every night. I laid on the floor in my dining room, stared at a bottle of Drano in the bathroom and thought about drinking it.

I lost hope. A little more, each day, gone. I started seeing a psychiatrist.

I told the church I’d take the youth group on a mission trip to Alabama, but after that I had to step down. I had to move in with my mom. I joked about how much hydrocodone I needed to get through the mission trip, hoping that maybe someone would understand how difficult being alive was for me right then. Some people laughed, most looked at me in horror and then went about their day.

I made a work-from-home agreement with my boss at my full-time job so that I could go live with my mom — two hours away in a town that only recently got a McDonald’s.

The night before the move, I went to the ER. The pain was horrible. They gave me a really great drug, which was super, until it wore off. Then, somehow, the pain came back even worse. A few months later, the pain was just as bad, just as gut wrenching, so I requested the same drug. The second time though, I had some crazy reaction, and instead of a few hours of peace I threw up. All night. Over, and over and over again. Until I was throwing up air.

I finally, officially, wondered how the hell God could do this to me. To anyone.

I joined pain groups online. People would write things like, “Well, I’m just happy to be alive.”  Really? Why?

They would say, “Well I’m I’ve been dealing with horrific pain everyday all day for years, but on the bright side it could always be worse!” Umm, how exactly could it be worse? Your whole family could be dead? Well, yes, that would be worse. But other than that, there’s not much worse than a life spent dealing with chronic pain.

I would think of Jesus, enduring His trip to the cross. Enduring all that pain. And I’m only a little ashamed to admit that I was jealous that his pain ended after just a few hours.

Oh, to have an ending.

But I don’t have one yet. I’m still stuck. In this horrible pain.

I take pill, after pill after pill. The narcotics make it hard for me to remember pronouns. The nerve pain medications make it hard for me to stay awake.

None of them give me my life back.

I shower once a week.

It’s been a year and the pain is just as bad as it was on the first day. Sometimes it’s worse, but it’s always bad.

Have I learned to be more compassionate? Of course. But when I’m in pain, I’m also meaner than I’ve ever been in my life. I yell at my mom, I scream at my sister and my brother. I get angry at God.

Have I learned to be more present in the moment? Yes. But only in the same way that someone who’s drowning and gasping for air has to think about their current state of affairs.

Some of the doctors have given up hope. Some say they haven’t, but I can’t really tell if they’re lying or not.

As for me, I’m still undecided.

In the pain groups, people say there’s a certain amount of peace that comes from accepting it. But I want to keep fighting. I want my life back. I want to be who I was a year ago at this time.

Well, a year and one day ago.

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Fighting the suicidal thougths

Editor’s Note: This post originally appeared as a column on the National Pain Report.

The pain in my ribs has been particularly horrible the last few days.

I’ve rarely been able to get out of bed or off the couch. I’ve been absent from conversations. And I’ve been trying to sleep whenever I can because it’s the only relief I can find.

I don’t want this life.

I don’t really much care if “God has a plan for me.”

I don’t really care if I’m “still needed.”

And I really, really, really don’t care if I’m supposed to “learn something” from this awful experience.

I started taking Cymbalta about a month and a half ago, and I have to admit that it has curbed the visceral suicidal thoughts that started about 3 weeks after the pain started. The ones I was having on an almost daily basis. The ones I used to wake up with and go to bed with. The ones that used to linger in my head as I’d contemplate things like whether I should try to live through the next week to see the next episode of “The Good Wife,” or whether I should just go ahead and slit my wrists in the bathtub that night.

But even though the Cymbalta has helped with primal urge to end it all, there are still plenty of other suicidal thoughts lingering around.

Reason is enough of a reason to want to kill myself. I ration that if I have to endure this horrible pain for the rest of my life, then I don’t want to live the rest of my life.

I start to think that I might have the horrible misfortune of both never being cured and living for the next six decades. And I come to the conclusion that taking a bottle of pills all at once would be better than bearing that.

It’s hard to explain to people just how quickly pain makes you crazy. How quickly it makes you want to give up.

If I had been asked a year ago how I would react to something like this, I would have assumed everything would have been so different.

I would have thought my faith would have given me the strength I needed to get through it. I would have thought that my friends and my family would have understood just how horrible the pain really is and that they all would have rallied to support me. And I would have imagined that I would have been able to go to a doctor and get some sort of relief.

But I would have been so very wrong.

I can understand euthanasia now. I can sympathize with those patients.

And I can’t help but wonder if some of the thousands of deaths each year caused by accidentally overdosing on prescription pain pills are no accident.

When you’re enduring horrible, horrible pain on daily basis, it’s as if your body is hard wired to assume you must be close to death. When you aren’t though, when you just keep on living, day after day after day, well, it makes you crazy.

But then, just when you’re about to give up, just when you can barely breathe, you inhale a gasp of air.

My brother and my grandma and I were in the living room the other day. And we were talking about my other grandma, on my dad’s side of the family, and how devastating it was when she died. And I turned to my living grandma and said, “When you die, it will devastate this family.”

And my brother turned to me, as if he’d been waiting for the right time to tell me this, because he knew where my thoughts had been, and he said, “Crystal, if you die, it would devastate this family for years. You are the rock that holds this whole family together.”

It’s just enough to air help me breathe a little while longer.

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9 cool things I saw online

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I spend so much time desperately looking for things online related to my chronic pain that I thought I would start to do regular round-up of things I’ve found. While the round-up was inspired by Dooce, and Rachel Held Evans, I made it into a list because I’ve been reading way too much Buzzfeed.

I’d like to say something very official like, “This will appear every Sunday,” but I don’t want to agree to anything just yet. For now, let’s just go with, “It will appear today” and see what happens.

And of course, just like there’s more to me than my chronic pain, there’s more to this list than chronic pain as well. Enjoy.

1. FDA Wants Tighter Controls on Hydrocodone

The National Pain Report says the FDA changing the status of the drug Hydrocodone to a Schedule II substance, from its current status as a Schedule III substance.

As someone who relies on the opiate to help me maintain my job, this causes me to pause. Specifically, the idea that doctors may not be able to change the dosage of the drug, although I’m not exactly sure how that would work.

The National Pain Report says if the drug is rescheduled:

“Patients must present a written prescription to the pharmacist for a Schedule II drug and physicians are not allowed to call in a prescription to the pharmacy.  Schedule II drugs are limited to a 90-day supply, after which patients must visit their doctor to get a new written prescription. Pharmacists are not allowed to change the dosage, formulation or quantity prescribed of Schedule II drugs.”

And I know there is a good reason why the FDA is looking at this drug. The same article says:

“”Overdoses from painkillers such as hydrocodone now take the lives of more than 15,000 Americans each year, more than heroin and cocaine combined.”

And while even one overdose death a year would be too many, it is important for patients with pain to stay educated about these issues and advocate for their rights as well. After all, I know firsthand how quickly your life can be ruined without proper pain management.

2. Chairman Mao Invented Traditional Chinese Medicine

Everyone from my boss to my medical doctor’s has tried to get me to try acupuncture, but I’m just not very interested in it. I looked it up online and when I read on Wikipedia that it was basically rooted in the idea of fixing the qi energy in your body, I figured it was on the same level as saying a really good prayer — yes it could work, but it’s not an exact science.

This article should probably be read with a grain of salt itself, but I have to admit I printed it out. I recently gave in to my medical doctor and scheduled an appointment for an acupuncture consultation in November (pain makes you try crazy things, all right?) and I’m planning to bring it along.

“The second part of Mao’s project was to provide Westerners with sensational evidence of Chinese medicine’s efficacy, particularly of acupuncture analgesia. The watershed moment was in 1971, when New York Times editor James Reston wrote an article entitled “Now, Let Me Tell You About My Appendectomy in Peking.” In it, he recounted how Wu Weiran of the Anti-Imperialist Hospital had administered “a standard injection of Xylocain and Bensocain” before removing his appendix. Later, while Reston recovered, acupuncture was used to relieve pain from post-operative gas. Eager to believe in mystical Eastern miracle workers, credulous Westerners misreported the story, claiming that acupuncture had been used as an anesthetic during Reston’s appendectomy, a falsehood that still has currency.”

 3. Chronic Perseverance.

Something that’s really, really helped me during the longs days of laying in bed wishing I were dead has been the amazing chronic pain groups on Facebook.

I especially like Chronic Perseverance. The moderator is a woman named Jenn, who, according to the “About” section, is an attorney and holds a Ph.D. in United States history.

She also suffers from Ehlers-Danlos Syndrome (EDS), dysautonomia, Mitochondrial Disease, stroke-like episodes, migraines, GI dysmotility, pulmonary disease, a weakened chest wall, and Hashimoto’s Thyroiditis, and other issues.

The site is unique because Jenn only posts quotes and pictures. And while there is a time and place for those in chronic pain to get together and share their struggles and victories, sometimes it’s nice to just read a quote from someone that seems to perfectly capture your daily struggle.

In fact, I like her page so much that I’ve set Facebook to send me a notification every single time posts anything at all. It means I’m nearly always the first person to “Like,” so she probably thinks I’m stalking her, but you know what they say, “Stalking is the most sincere form of flattery.”

Some of the recent quotes she’s posted that I really like, include:

“So often we try to make other people feel better by minimizing their pain, by telling them that it will get better (which it will) or that there are worse things in the world (which there are). But that’s not what I actually needed. What I actually needed was for someone to tell me that it hurt because it mattered. I have found this very useful to think about over the years, and I find that it is a lot easier and more bearable to be sad when you aren’t constantly berating yourself for being sad.” – John Green

And,

“Once you start recognizing the truth of your story, you will recognize your worth. Things happen, but you’re still here and you are still capable and powerful. You are not your circumstance. You’ve made it through this far and as you go through adversities in life, just remember that you are still fully equipped with every single tool you need to fulfill your purpose.” – Unknown

4. “An Open Letter to Those Without Invisible Disability Or Chronic Illness.”

I actually saw a link to this letter on Chronic Perseverance, and I think I’ve seen it linked on Facebook before. It was written in 2009, but it perfectly applies to my life today. If you’re enduring chronic illness, or someone you love is, I beg you to read this letter.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

5. TED TALK: Elliot Krane: The mystery of chronic pain

This Ted Talk is short, sweet and all about how the nervous system can get effed up. Wile Krane doesn’t really talk about how to fix chronic pain when nervous system misfires, he does do a good job explaining of how it happens.

“We think of pain as a symptom, but there are cases where the nervous system develops feedback loops and pain becomes a terrifying disease in itself. Starting with the story of a girl whose sprained wrist turned into a nightmare, Elliot Krane talks about the complex mystery of chronic pain, and reviews the facts we’re just learning about how it works and how to treat it.”

6. Children’s Hospital at Dartmouth-Hitchcock performs Katy Perry’s Roar

This video just makes me happy. You should watch it right now.

7. God’s Workshop: Terrific first draft, but the female characters need some work.

In short: An editor offers their notes on the first five books of the Bible. And he makes some good points.

Also, please don’t turn me into a pillar of salt for saying this, but I think the rainbow at the end of the chapter is a bit, well, clichéd. I would either just lose it altogether or maybe come up with some other sign of your eternal covenant with Noah.

8. Of course, what list would be complete without a list of my 3 favorite Buzzfeed lists from the week?

9. And here are my favorite Facebook photos from the week:

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What it feels like to go off hydrocodone cold turkey (for me anyway)

Yesterday — partly because of my own stupidity and partly because the only pharmacy in Byron, Il closes at 7 p.m. — I had to go off hydrocodone cold turkey.

And it was hell.

I ran out on Wednesday evening and I immediately went over to the pharmacy to ask them to call in a refill. But, the doctor’s office was already closed. So they said they couldn’t refill it until the next day.

No big deal. I could make it through the night. And I didn’t want to make a big deal of it and come off like a crazy drug addict.

So, back home I went.

And normally going one night really wouldn’t be that bad, because I take a pretty strong drug to make me fall asleep every night.

But the thing is I had to go into the office the next day. On no pain drugs. And, because my office is two hours away, that meant I wouldn’t get home in time to pick up the prescription before the pharmacy closed for the night.

My mom ended up driving me into work because I have realized that the two-hour drive each way makes me suicidal.

Even with her help, going off the hydrocodone cold turkey was still enough to almost kill me.

When I got to work I headed right for the bathroom, because I had buckets of diarrhea shooting out of me.

My palms were sweating and my rib pain was intensifying.

I lived through that and went to a morning meeting.

After that, I had planned to go to lunch with my mom, but suddenly my boss decided she wanted to take our team out to lunch so all of a sudden I had to look professional for a two-hour business lunch while I was in opiate withdrawal.

I popped some Tylenol hoping they would help take the edge off.

After I got back from the lunch I told my editor that’d I be over to his office in a bit to talk after I finished up some work at my desk.

Then, I ran to the bathroom. More diarrhea.

I was so weak, and my muscles hurt so bad that I just sat on the toilet with my jeans around my ankles, leaned my head against the blue bathroom stall, and prayed to die.

I got myself together, pulled up my pants, washed my hands and made it back to my desk, where I laid on the floor, resting my head on my puffy pink coat, until I could find the will to stand up again.

When I finally walked over to my editor’s desk to talk about the newsletter, so much time had passed that he said, “Wow, you must have had a lot of work to do. I thought you might have left for the day.”

We chatted for a bit, and then I ran back to the bathroom. More diarrhea.

I wanted to go to the hospital so bad. My ribs hurt like hell. My body ached all over. And I just wanted to be dead.

I thought about laying on the floor by my desk in the fetal position and making my mom come up to the office to get me.

But I didn’t.

Instead, I gathered up all the strength inside me, and got my things together so I could go home for the day.

As I walked over to say goodbye to my boss, I thought maybe I had at least pulled off giving him the impression that everything was fine. But when I told him I was leaving, he said, “Wow, it looks like you barely made it through the day.”

I tried to sleep on the way home, while my mom drove, but I was in so much pain that I wouldn’t really call it sleeping. Needless to say we didn’t make it home in time to get to the stupid pharmacy before they closed at 7 p.m.

And so, I had a long night ahead of me.

I tried to go to sleep as soon as I walked in the door, but every single joint in my body hurt.

It felt like a knife was in my ribs, and pain was radiating through my bones. I kept having to run to the toilet because of the diarrhea, but there was nothing left inside of me to come out.

I prayed for relief.

I prayed with all my heart that God would let me die that night. That he would take my life. That I would finally get the true relief I’ve been seeking for months and I would get to go to heaven.

I begged God for this to end.

My ankles felt simultaneously swollen, sprained and twisted. It felt like I had full-on tendonitis in my wrists. My body felt broken — all over.

And I didn’t think I would make it through the night.

I tossed and turned all night.

I thought about suicide. I thought about how much I hate hydrocodone.

I thought that once it got out of my system I would never go back on it.

But even as I thought it, I immediately knew it was a lie.

I knew I would go back on it the very second I got a refill in the morning. I knew because while my whole body was attacking me, there were my right ribs, screeching at me, haunting me, reminding me that I needed the hydrocodone.

My amazing mom drove to the pharmacy this morning to get my refill, and when the new dosage kicked in, I finally felt like I could breathe again.

I don’t want to be on this stupid drug. I really, really don’t. I hate that half the doctors I see accuse me of being a drug addict. I hate the I have to constantly wonder if I am a drug addict.

But more than that, I hate living my life feeling like I’ve just been stabbed in the ribs.

Some people out there might choose to forego the hydrocodone so they could avoid being on an opiate. Some people out there might be strong enough to preserve through this horrible, horrible intercostal neuralgia pain without strong pain pills. And, some people out there might be able to live like that.

I am not one of those people.

Quality of life matters to me.

Having even a few hours a day when the pain is at a minimum is important to me. And if that means my body is physically dependent on a federally regulated opiate, then so be it.

All I can tell you is that the pain that stabs through my right ribs every single day of my life really is that bad.

Hydrocodone

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I’m still alive. My ribs still hurt though.

My ribs still hurt.

Yesterday was awful. I was working from home and I managed to stay with my laptop until about 3:30 p.m., but then, after that, I just laid in bed and watched hours and hours of TV while I prayed for the Hydrocodone to work. But it never really did.

Today was sort of alright, so I took a shower. I know. Crazy, right? To be honest, I’m pretty much at a stage in my life where I only shower two or three times a week. All the effort and the moving my right arm to wash my hair just seems to make my ribs hurt more, and it’s just not worth it to put myself through that every single day. I used to at least put dry shampoo in my hair on the off days, but that stuff doesn’t really work that great, so I’ve pretty much given up on that now too. Instead, I just throw my hair up in a bun.

It’s called: Working from home.

I do shower the one day of the week I drive into the office, or when I’m traveling for business. Obviously. Gawd, people, I have some standards.

Speaking of work, I’m flying to Atlanta tomorrow to go to the National Convenience Store Show. It’s my third business trip in six weeks. After this though,  I should be in Illinois for the rest of the year.

My boyfriend’s technically from Atlanta, although he only spent five years of his life there. I spent four years of my life in Macomb, Illinois going to WIU, but I barely even remember how to get there. He, however, still roots for the Atlanta Braves like they’re his hometown baseball team. I think it’s because the Cubs (his second favorite team) well, let’s just say they have problems winning and stuff.

Anyway, I miss my boyfriend. Lots. We are still managing to see each other at least once or twice a week, but the long distance thing sucks. Lots.

And my ribs still hurt. I think deep down he’s still hoping I’m going to get “cured” but that’s looking less and less likely.

I did get in to see a doctor at the University of Wisconsin-Madison recently.

It’s university-level care, so it should be top notch. He was pretty cool, and he didn’t seem overwhelmed by my case, so I’m going to stick with him for awhile.

He referred me to their pain specialty department, but they won’t even make an appointment to see me until they get all my medical records from Loyola. It’s been three weeks and Loyola still hasn’t sent the records though. So I’m basically in holding pattern.

And I’m spending my days trying to space out my hydrocodone waiting to see a pain doctor who hopefully won’t freak out about me being on opioids. The last two refills I got on that drug have been from primary care doctors and both of them have been super weary about giving it to me.

They’re all “You take four a day? EVERY day???!!” And I’m all, “Yes. When I said level 8 or 9 pain every day, I wasn’t joking.”

And let’s be honest. If only need four in a day, I’m having an AWESOME day.

On aside, my new doctor did say my symptoms were very severe for someone with intercostal neuralgia. He said he thought I might have Complex Regional Pain Syndrome (CRPS) in my ribs, although he followed that up by saying that CRPS is usually only in your arms or legs. And everything I read online seems to confirm that, so I’m not sure how correct that was.

He also added a new medication to my list of prescriptions, but it doesn’t seem to be helping much. Although it’s one of those long-term meds, so it takes at least a month before you know if it’s working.

And, as of right now, the pain is still horrible.

I was having a hard time eating yesterday because I was in so much pain, and I turned to my mom and I said, “Well, I guess I have good days and I have bad days.”

And she said, “What’s a good day look like? I don’t think I’ve seen one of those.”

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