Pills for Breakfast: What’s Next?

Pills for Breakfast: What’s Next?

The thing about being Type A is that I’ve been trying to figure out the answer to “What’s next?” since I was 5.

Back then, I was vying for the accelerated reading groups — hoping it would lead to a good first grade teacher. That, of course, would put me on the right path through elementary school, which would then help me get the right classes in junior high. Those would inevitably lead to advanced courses in high school, which would help me get into a good college. And, of course, a good college is exactly what you need to get a good job and have a good life.

Like I said, I’m Type A.

Except, now that I’m sick, I hate “What’s next?”

Aside from the fact that this illness has destroyed all of my carefully laid plans, and made it impossible for me to even know what tomorrow will bring (much less my 30’s and 40’s), it has also made “What’s next?” take on a whole new meaning.

When you’re sick, “What’s next?” suddenly becomes “What are you doing to get better?”

Foodlogo_question_markEveryone from your best friend, to your boss, to the mailman feels like they’re entitled to know exactly what you’re doing to find a cure.

“Oh, so you went to the Mayo Clinic? And it didn’t work out? Well, what’s next?”

“Oh, you finally tried acupuncture and it was horrible? Well, what’s next?”

“Hmmm, so you aren’t willing to eat someone else’s healthy feces to get better? Well then, what’s next?” (True story).

It’s exhausting. And yes, I know most of the time, people probably mean well. But as the person who is actually sick, it sucks to hear “What’s next?” every day, when sometimes the only thing you actually know is next is another dose of hydrocodone in four hours.

I mean, I get it; our society has a really hard time grasping chronic illness. The idea that someone could be sick for the rest of their life doesn’t quite line up with the American Dream. Heck, I have a chronic illness and I still have a hard time accepting it.

There has to be something out there, something else to try that could lead to cure, right?

But now, nearly two years after waking up with excruciating rib pain that never goes away, I finally have to admit that I have no idea “What’s next?”

I woke up with obscene rib pain in February, 2013, and for the first year and half, I was all about whatever was next. I was constantly looking for new doctors, trying new drugs and visiting new hospitals.

But aside from getting the pain down to a more manageable level, nothing has really worked in the way that I, or anyone else in my life, had hoped.

So, for now, I’m relying on six different prescriptions, Alka-Seltzer Heartburn Relief Chews, and ibuprofen to get through each day. Beyond that, I’m at a loss.

I mean, I might end up trying the 3-week pain clinic at Mayo, but the waiting list is apparently so long that they sent me a letter in September telling me that they would call me in December. And I still have no idea how much it’s going to cost, if I’ll be able to get off work, or even if it’s worth trying.

There’s also the Cleveland Clinic, which is supposed to be like the Mayo Clinic. But the problem with that is it could end up being just like the Mayo Clinic.

I’ve also read about procedures where they can go in and cut the intercostal nerve, which some doctors think is the cause of all my problems. Something like that could be the miracle I’ve been searching for. But whenever I ask a doctor about it, they look at me like I’m crazy and stupid. Then again, maybe I’m finally at the point when crazy and stupid is my only option.

Or maybe I’ll just live out the rest of my life on opioids, praying my liver doesn’t give out before I do. And hoping that God really is out there and that maybe I will finally wake up pain-free one day.

I just don’t know right now.

What I do know is that I am still in pain. It does still suck. And I have no idea when or even if I’ll ever get better.

If that’s hard for you to grasp, think how hard it is for me to live it.

Crystal Lindell

Crystal Lindell

Crystal Lindell is a 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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Megan Klenke

Hi Crystal! I’m Megan I’m 21 and for the past 4 years I’ve had rib pain. This is the first time I’ve stumbled across your writing and as soon as I saw that I freaked out. Nobody has been able to give me any answers either and I’ve never found anybody else with rib pain like mine. I’ve been to two different doctors at Cleveland Clinic and got rejected by the Mayo Clinic. My rib pain is in my lower ribs on both sides and it’s a constant, deep achy pain. I also have joint pain in almost all joints, terrible fatigue, Raynaud’s, other stuff…they originally were thinking I have lupus but my rheumatologist is hesitant to diagnose me and pump me full of more hardcore drugs than I’m already on until she can figure out the rib pain. I’ve been to every other kind of doctor we could think of and nobody knows what to do to help me. I’ve got fibromyalgia and Ehlers-Danlos type 3 hypermobility along with something autoimmune like I said but nobody can account for the ribs. My pain doctor is trying to control my pain, but I’ve had steroid shots and the intercostal nerve blocks in my back and ribs and none of it helped. But just because it didn’t help me doesn’t mean it wouldn’t help you. The injections are scary but I think it’s ridiculous that your doctor is unwilling to try especially since you’ve tried everything else. I’m on a Butrans patch now that’s been the first thing to truly help but obviously I would still like some actual answers. If you have time, I would love to hear back from you and hear more details about what you’ve been going through. I loved this article and I hope that you’re doing alright.

Crystal,

I have some information that might be useful for you. 2 years ago on my chronic pain blog, I did a 3-part series called Quest for Diagnosis. In it I listed some options for patients having difficulty getting a diagnosis. On my blog site look on the right column for the 3 word title and you’ll connect to all the info: http://nippaininthebud.blogspot.com/2012/01/quest-for-diagnosis-7-tips-to-navigate.html

In case they block the link to my blog, here are a few suggestions for you:
–NIH Undiagnosed Diseases Program
http://rarediseases.info.nih.gov/research/pages/27/undiagnosed-diseases-program

–In Need Of Diagnosis, Inc.
http://inod.org

–You can contact the NIH Clinical Center and talk to a specialist who can help find a trial to match your needs.
http://www.genome.gov/17515946#al-3

I hope one of those or something on my site will be helpful. It took me 2 years to get a general diagnosis for myself. I don’t have an exact diagnosis (I’m a zebra!) but at least I generally know what’s going on with my body. I wish you luck!

~Shannon

Kellix

Also I meant FDA not DEA sorry bad grammar. 🙂

Kellix

Crystal I love your column and writing, I hate you have to go thru the same things, I have had to. I had a Water sking accident, I was trying to learn how when I wrecked I felt the disc pop in my body. From that point onward I did everything the doctors said for 8 years, epidurals, physical therapy, Ice, you name it I have done it. Finally I said enough I had a laminectomy the neurosurgeon said he was going to do it a way where they wouldn’t have to cut thru my back muscles and do a discectomy too. When I woke up, they nicked my dural wall and sewed it up and I had to wait on my back for 24 hours, it was agony. Also the these doctors did not do the way they said they would they just cut thru my back muscles and did the laminectomy. I came back 2 weeks later and found out I had a new doctor, they let mine go. They totally lied to me. For the next 2 years the pain never went away, the doctors thought I was trying to get drugs, which was BS. So I lived off advil and Tylenol. 2 years later I went to the doctor I wanted to go to my mothers boss, hes one of the best surgeons in Atlanta, that disc turned jet black. I had DDD degenerative disc disease. Soon it was going to be bone on bone, so I had to get a fusion done. He did it, everything was going great but at the 3rd month mark I did something stupid, we had a fire drill at work and I walked down 21 floors and it the insructions it said do not use stairs. I have had this tingling in my foot and leg that hurts like heck and they can’t explain it, done epidurals, eventually was put in pain management. Also the 4th month, I got a intestinal blockage went to the hospital. they thought it was my gallbladder, I had to hire the stupidest GI doctor in the world. They removed my gallbladder, that didn’t fix the bathroom issues. I saw the colonoscopy, it didn’t look good. I’m no doctor but it didn’t. I went to a specialist and he said you got crohns BAD, 2 more surgeries, the first had complications. That year I was in hospital for 27 days. I prayed I was over it, now I have had bronchitis 8 times and pneumonia twice. this has all happened in 4 years since the back surgery and I am still in Pain management, I feel like he medical environment has failed me. Also I found out when they did the fusion, they used BMP2 Infuse, there are tons of lawsuits about it and it can raise the risk of cancer by like 20% and cause a lot of the problems I am having. I know your a journalist, take a look at BMP2… Read more »