Pills for Breakfast: A Year of Pain

Pills for Breakfast: A Year of 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.

Crystal Lindell

Crystal Lindell

It’s been exactly one year since I woke up with a pain on my right side. It was Super Bowl Sunday, 2013. 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 emergency room.

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 cat scan with intravenous dye that made me vomit.  They took some pictures, charged me and Blue Cross thousands of dollars, and then told me nothing was wrong.

Nothing at all.

The camera in my throat did show a small ulcer in my intestines. That was probably it, they said. 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” and suggested I was just “stressing myself out.”

Two days later, I fell off the cliff into the valley of suicidal thoughts, where I would swim around like it was a hot tub for about eight months. I hoped that 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 that come 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 three.

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. 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 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.

suicideprevention1On 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 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, staring at a bottle of Drano in the bathroom and thought about drinking it.

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

I told the church I’d take the youth group on a mission trip to Alabama. I joked about how much hydrocodone I’d need to get through the mission trip, hoping that maybe someone would understand how difficult being alive was for me. 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 the pain came back even worse.

A few months later, the pain was 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 long, over and over and over again. Until I was throwing up air.

I 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, “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.

Crystal Lindell is journalist who lives in Byron, Illinois. She loves Taco Bell, watching “Burn Notice” episodes on Netflix and Snicker’s Bites. She has had pain in her right ribs since February 2013. It is currently undiagnosed.

Crystal writes about it on her blog, The Only Certainty is Bad Grammar.

The information in this column is not intended to be considered as professional medical advice, diagnosis or treatment. Only your doctor can do that!  It is for informational purposes only and represents the author’s personal experiences and opinions alone. It does not inherently or expressly reflect the views, opinions and/or positions of National Pain Report or Microcast Media.

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Dennis Kinch

My battle isn’t my body anymore, because my body is almost gone. There is no chance of stopping it from “eating me alive.” I know this and I accept this. My battle, the one that gave me peace, was with Pain as an entity, and what it did to me. As I said: “Pain is a monster who preys on those who fear him, uneducated and unaware of the pitfalls he places in our path. He builds illusions of crisis on those who are new to him.” and: “It is my job now, for the rest of my life, long or short, to give people in pain as much awareness and education as I can, and hope upon hope that they get it.” Or at least get the “hope.” I walked 3000 miles to show that people in pain, constant, severe, chronic pain, like myself, could learn to calm it down, to put it in the background, and accomplish amazing things. There are steps that can be taken to get out of crisis mode…but it takes time, as much time as it takes to be ready for it. For me, that was 4 years! Bottom line: It seems there is no end to this tragedy, this crisis, but THERE IS. And it will be there when you’re ready for it. Acceptance doesn’t mean stop fighting, it means understanding your situation and learning to fight a different way, with different weapons. I accept my prognosis and understand I can’t fight the disease, but I can fight for happiness and peace. Acceptance, Forgiveness and Belief, the true weapons of healing, only come when you’re ready. And when you go through those lessons there will be PEACE afterwards. I walked to give people hope. To show them what is possible, some day, when it’s time. I studied and interviewed hundreds, to figure out why it took 4 years for me to get to the positive side of the Pain Cycle. But also to prove that there is a positive side. I’m not the only one who found it. I personally know many more pain patients, with very horrific stories, who also found it. All of us took the steps to get there, and it took years, but it is there. My 4 years was about “Falling down the stairs.” I couldn’t hear or see anything positive because I was tumbling out of control. I was literally a day away from suicide. My control, or my “landing” came from a PT who literally smacked me in the head and said,”Is this who you are? Is this how Dennis does PT?” NO. Dennis was a real fighter (boxer) and was an athlete and driven. From that day on I was awake. I was an athlete doing PT. I lived PT. 10 years later my disease is very advanced, close to the end. I live in a chair (recliner) all the time. I can only sit. Can’t walk, can’t lay down, can’t squat or bend at… Read more »

trudy myers

I have also felt suicidal many many times. Recently I pissed off my pain clinic I had gone to for 10 yrs-and they began to take me off my medications-I panicked totally. I was barely making it with my MEDS! I went to a new clinic and they cut my meds back to a level that just helps a little bit. I have no quality of life. I think the way pain specialist treat patients is wrong. I feel bad for you.

Bonnie

Well I am the opposite. I am alive now but I know that the idea of spending each day in agony with no improvement, neither myself nor my family want that for me. My parents “said their good bye’s at Xmas” “just in case” but you should interpret that as “we don’t want the job of taking care of you as you deteriorate. My kids know I am going to be around for them for as long a time as possible, but we have talked about the fact that at some point euthanasia is an answer and it s not about THEM, or my lack of LOVE for them, it’s about the fact that unless they come up with a cure there will come a time where my pain killers have worn off and my tolerance level will have increased to the point where I am no longer a person I am just a full time body lifting my head to swallow some pills denying my family the right to have a good job, a nice home, holiday’s and happy memories with their own kids. So if suicide makes me selfish I wear that badge with pride. My time is not now but when it comes my kids have given me their full support.

Susan

Dennis, do you realize you as many just said
“it’s in your head”
“mind over matter”
“you don’t look sick”
“you need to talk to a professional”

I am happy that you beat your monster but some of us are battling our own bodies.

12 years ago for me to be diagnosed with my war that consist of:
Fibromyalgia
3 ruptured disk inoperative because of fibro
Lupus
R. A.
Spondyllitis
to name a few.
I have gained 100 lbs. I suffer short term memory loss.

By trial and lots of errors allergic to:
Steroids
NSAIDS
Lortab
Asprin
Morphine
Percocet
Kadian
and latex, I’ll stop there.

I can’t load my dishwasher in one try, it’s usually a 3 x effort, I can’t sweep a broom. Can’t sleep, sleep to much.

I still find it hard to ask my family to help me because doing that I lose.

I’m a sore loser.

Clive Simister

Hi I’ve lived with pain in lower back since 1981 broke coccyx in1995/6 and have been in chronic pain since, life changed immeasurably have just been diagnosed with fibrmyalgia and cfs in bloody agony and pray daily for relief and nightly for death never ending frustration anger loss and so pissed of at you don’t look sick

It’s been about 10 years now. The suicidal thoughts have subsided, but the rest is pretty much accurate. I take my pain meds pretty regularly, but the pain is still agonizing. I don’t live the life I once did, I don’t enjoy life the way I used to, I miss my life with my kids, you know the one where you’re actually involved in their life. I live my life on my couch in the living room because I can’t sleep in my bed. It hurts my back so here I stay on the couch day after day month after month year after year. My only coping mechanism is the internet and social media. I only leave the house if I have a Dr.’s appointment. And Holidays are miserable. So there it is in a nutshell. My life. One bit of advice to those that I love. Enjoy life to the fullest because you never know when it will be taken away.

Dennis Kinch

I agree with you 100%. And I’m one of those “Isn’t life grand” people! But your are right. It doesn’t seem worth it. I guess, for me, I’ve always believed that we were here to learn, bottom line -learn. So, when I decided I wasn’t going the suicide route, that it just wasn’t me to do that, and which I know would create many, many scars on people I love and who wouldn’t understand, I decided to go on a journey of learning – about pain and all of its extensions.

It’s been 10 years since my low point, and since then, I did things I never thought I would, 1st time things, in my 50’s! I saw my girls go to college and get to visit with them a lot! And I learned so much about pain, I wrote a book.

If I tried to take the pain I presently live with everyday back to 10 years ago I know for a fact I would have been in the hospital, screaming, on massive amounts of drugs. There is no way I could handle it. Looking back, if I could bring that pain I lived with 10 years ago, to the present, it would be the best I’ve felt in 10 years! Almost no pain at all.

What I learned, bottom line, is that Pain is a monster who preys on those who fear him, uneducated and unaware of the pitfalls he places in our path. He builds illusions of crisis on those who are new to him.
Once I started learning I was able to cut him down and down and down, until now he is just a small thing who sits in my spine and waits for my weak days so he can try again to bring me down.

Sometimes he gets his way for a day or so, then he cowers back to his hole because my attitude and productivity and ultimate happiness at what he hasn’t taken from me is so enormous…he doesn’t stand a chance! That’s what I’ve learned in 10 years.

It is my job now, for the rest of my life, long or short, to give people in pain as much awareness and education as I can, and hope upon hope that they get it. This keeps me as busy, as busy as I can be, when I have good moments and also keeps the Pain monster down to size.

I wish I had better news. For some it takes days, for others it takes years. It just depends on how strong their spirit was before, how tough and crazy and willing to try stuff. For me it was about 4 years. It’s been steadily going up since. I guess all I can say is…Bon chance. Stay hopeful.

Tracy Gregory

I had a friend who went thru the same exact thing. She had her gallbladder removed because they told her that was the problem. But she was still in pain. I believe it turned out to be something wrong with her bile duct. It was very hard for the doctors to figure it out. It involved a camera down her throat. If I find out more I will send it.

Btw, I have Intracranial Hypertension. I have been in daily pain for six years. Its hard and I know exactly where you are coming from. I avoid the ERs because they think I am a druggie.

Sissy

You say out loud what I think but would not horrify others by putting in print. People don’t believe we could possibly be in this much pain day in and day out. I pray for an end but love life. Catch 22.