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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Comments (6)

  1. SoCoCoJo

    I think this is a very honest view of life with chronic pain. You are right that we never “get used to it.” I have had mine for about two years from herniated discs in my neck and a two level disectomy and fusion. Some days are better, but always bad. I hope you find a good pain doc to help you out. Regular docs won’t touch pain. It’s really sad.

    Reply
  2. vannessa

    I say ur story on a news feed on my facebook i think talking about a new narcotic pain med. From what I gather your pain is in your dib cage area? I have fibromialgia and there is a side affect or another joining symptom that is related to fibromilagia and its where the cartaledge around the ribs actually gets inflaims snd cN fracture and their is a fancy name for it but i cant remember it right now. Id love to be friends witjh you and if nothing else be support for one another. Ive been dealing with fibromialgia since i was in my early 20’s and im 36 now i also have suffered a very bad fall and i hurniated several vertibra on myrt side if my neck n thorasic and i have bad sciatica and that problem w the cartaledge in my rib cage itts very hard to keep up a will to live. But Gods plans are not our plans n his ways are perfect even if we dont see hoow they could be we just have to believe.

    Reply
  3. Greg

    Crystal,

    I’ve been reading your blog, and feel like I’m reading my own thoughts. My hell started two years ago with some right rib cage pain, but the real torture started August 31, 2012 the moment I woke up from having my healthy gallbladder removed. Since then I’ve lived in constant horrifying pain. But after surgery the pain spread, and now circles my entire upper torso. Right, left, stomach and back just below the sternum. It’s better and worse, but never leaves me. Since then I’ve had 3 CT scans, MRI, Upper Scope, lower scope, Endoscopic ultrasound, ERCP, gastric emptying and tons of blood work. All stark raving normal. Doctors and family don’t understand the hell I live in. They I should be glad nothing terrible is wrong, but they don’t live with a burning vice grip on their ribs. I too have found myself jealous of people with an identifiable illness. It want until a week ago that I’d ever heard the word intercostal neuralgia. How were you diagnosed?

    Reply
  4. Ken McKim

    My wife has Crohn’s disease, and has not found anything to put her into remission.

    I have made a video called “The Slow Death of Compassion for the Chronically Ill” to help raise awareness of the challenges that the chronically ill face every day. It was a companion video to a White House Petition I had re: asking the DEA to not reclassify medicines containing hydrocodone to Schedule II from Schedule III, thus making them harder to access for millions of chronically ill people. It didn’t get enough signatures, but I’m still sharing the video to help raise awareness.

    http://youtu.be/6UyPlF66KME
    (over 2,600 YouTube views so far)

    Thanks for sharing your story, and thanks for letting me share with you. Please share this with others if you think it might help.

    My best regards,

    Ken

    Reply
  5. Catrina

    I too suffer! I have fibromyalgia, sciatica,3 lumbar disc herniations, plantar fasciitis, rheumatoid arthritis, and hepatitis C. I have severe right rib pain. I take pain meds and they never seems to help with the rib pain. I was told so many reasons for the pain from many doctors. It could be costocondritis ?sp, kidney stones and/or ovarian cyst, both found on ultrasound. It could be from my liver. It could be growing larger and stretching/pressing the nerves nearby. Gastro doc told me the liver doesn’t produce pain. Maybe it’s from my back? I take 26 pills just at breakfast. It took a year and a half to get prescribed pain medication. I was treated like a junkie because I was diagnosed with Hep C. I’m not sure how I contracted it. I was not an IV drug user. I believe it was from a tattoo I got when I was 15. I’m now 35 and can’t work anymore. I’m being supported by my boyfriend of 11 years. I’ve been out of work for 1 year now. I had to give up my job of 12 years at an animal hospital because it was very physical. I worked for almost 2 of those 12 years in pain. My boyfriend works a second job just to pay for my health insurance. I’m trying to get disability but takes forever. I just got approved for medicaid. I’m afraid of losing my doctor/pain meds with the change of my insurance and or doctor. So, every month I will have to pay cash to continue with my Rheumatologist and fight to get approval to get my meds covered. I put my life on pause. Can’t get married because I may not qualify for disability/medicaid. No getting pregnant because of the meds. I feel alone most days. I sit or lay down most of the day. My family is working. My boyfriend is never home trying to make ends meet. Friends are living their life and I’m too tired to go out. Going grocery shopping is the most I do all week. I clean my house in small incriminates so it’s never truely all clean at once. I can’t carry my laundry down to the basement. It’s crazy because I used to work 10-12 hours a day, commute, clean, shop, go on trips, and run a small pet sitting business. I’m 5 feet 1 inch tall and gained 40 pounds. I’ve given up on “real” clothes because they don’t fit and feel bad asking for $ to purchase new larger ones and having to look in the mirror. Don’t get me started on bras! I cry almost everyday, mourning my old self and feeling my dreams of a future slip away, life stuck on pause. I hate to shower. It wears me out and my thick beautiful hair falls out and getting thinner from the some of the meds. The worst part is I’m not sure they are working, but afraid if I stop things would be 1000X’s worse. I thank you for your honesty. It’s like going through the stages of grief when you lose yourself to the pain. There are some good days but definitely few and far between lately. I’m tired of fighting for answers and help. It seems with every new pain or issue comes a new diagnosis, referral to another doctor, another test, a new med. It took years to get this far and still am confused about it all. Every “specialist” has their diagnosis. Wish there was a “do it all” doctor out there. It’s like they send you to their buddy to spread the money around. I had my Rheumatologist send me to my PCP after getting a sinus infection after starting Embrel (sinus infections very common with this med) I tore my Plantar Fascia and ended up seeing my PCP, Rhuemy, and foot doc. Why? I’ve tried alternative treatments. Some help, some don’t. It’s very exspensive to try all these alternatives like acupuncture and chiropractic. If they were covered by insurance I would try anything that may help. People with RA talk about remission. I pray that it will happen one day, but with all this other crap i I don’t think it would totally make things better. I still have the other things on the table. Right now I have to see a maxofacial specialist because of neck/jaw pain (TMJ?) I lost the crown on my back right molar. I crushed it in my sleep. Wow, sorry for that rant, but it feels good to get that stuff out. I hide my emotional pain from the ones I love because I don’t want them to feel guilty or like they have to try to solve anything. Frankly, I know most of my family and friends love me and they want me to get better. Most understand and I don’t want to be Debbie Downer around them. There are also people in my life that think I’m a drama queen/faker. I don’t open up to them because it’s like giving them too much info to fuel that idea.

    Reply
  6. Too tired

    As I check my email I hold my breath. Will it have another lifeline from the pain buddies on the internet? Yes! I read it carefully, savoring each picture created in my mind. I’m not alone–I’m not alone.
    Thank you for reaching into my pain paddock and sweeping away turmoil for the moments I read your commonalities and feel good.

    Reply

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