Being a Dad Who Hurts
Every eight to twelve weeks, I sit in a chair for two hours while drugs are injected into my bloodstream through an IV. Before starting the IV, a nurse draws about four tubes of blood and sends them off to the lab. This is to make sure the drugs aren’t slowly killing me.
On the plus side, it’s a couple of hours of required solace; I can edit photos, write, read, or listen to a podcast. But it’s not always convenient. And this year, it’s going to be very expensive. During open enrollment, I costed it out, and it’ll actually be cheaper to pay around $4000 for my first treatment of the year than to pay the $40 copay I’d been paying, due to premium differences over the course of the year.
Where it started
In the year 2007 around the age of 19, I was emptying the fryer at Dairy Queen of its used oil when I stopped midway and ran to the bathroom. I vomited in the toilet. My stomach had been hurting off and on for over a year. When I went home, it didn’t look good, and my mother demanded that I go with her to the ER. By the time I went in, I was in so much pain I couldn’t move.
I was severely dehydrated, our family doctor (and family friend) told us later that day. And I had ulcers in my stomach. That explained the sensation that the lining of my stomach was being ripped apart with a dull blade.
Upon referral to a gastroenterologist and a ton more more x-rays, MRIs, and other tests, the diagnosis was Ulcerative Colitis.
The good news was that it could be controlled by medication; the bad news was that it would never go away.
After trying a few different medications and steroids, we eventually found two that would work together to control the pain, another that controlled the associated heartburn, another that controlled the anemia. As long as I took all the pills, the days were usually good. Occasionally I’d have flares of stomach pain that were anywhere from mild to knock-you-down painful that were often brought on by certain foods or the smell of tobacco smoke, but most days there was just a lingering, mild discomfort.
Every few years, it seemed my body would develop a tolerance and the prescriptions I was taking would stop working, and I’d switch to another one.
The pain had finally gone away (mostly)…
By the time I moved to Arizona in 2015, the discomfort pretty much had gone away, the diagnosis was reduced from Ulcerative Colitis to Crohn’s disease, and the pain more or less stayed gone as long as I took the medication.
I’d go to the doctor twice a year and get lab tests to make sure, and a colonoscopy every two years because having these types of GI diseases puts you at a much greater risk of developing colon cancer. But other than that, life was pretty good.
… And then it came back in a different form.
I got married in 2016 and was living my best life. I’d started to feel some unexplained pain in my wrists and fingers, but other than that, everything was great. But the joint pain slowly got worse, and I soon began to feel constant numbness from my fingertips to my shoulders. After about a year, I finally realized it wasn’t going away and went to a doctor.
The general practitioner ran a blood test to check for rheumatoid arthritis, and it came back negative. He referred me to a neurologist to see if it was carpal tunnel; that test also came back negative.
At that point, I went to a hand specialist for x-rays. Those came back fine. The hand specialist referred me to an occupational therapist to see if I had somehow injured myself. After several therapy sessions, she announced that we were wasting each other’s time because she could find nothing wrong, and suggested I go again to a neurologist. She was happy to continue the sessions, but she felt it would not help me.
So I went to a different neurologist, one that actually seemed vested in figuring out what was wrong. We tested again for carpal tunnel, and then performed another slew of x-rays, tests, and even a brain MRI.
She could say conclusively after all those tests that whatever was wrong was not neurological, so she recommended that I see a rheumatologist.
My rheumatologist and I have explored and tested every possible option: arthritis, rheumatoid arthritis, valley fever, Lyme, spondylitis, everything.
Finding treatment for years of unexplained pain
After all these tests and medical professionals, we still couldn’t find a cause. So my rheumatologist concluded that the joint pain had to be simply a complication of living with Crohn’s for over a decade.
But the same types of medication that control Crohn’s are also prescribed for rheumatoid arthritis. And while I didn’t have RA as an official diagnosis, the symptoms were so similar that my Crohn’s medications should have probably been helping with the joint pain. They weren’t.
Enter bi-monthly, two-hour infusions of Remicade, a drug originally developed as a type of chemotherapy. It seems the Remicade has kind of helped — before I started it, I couldn’t carry my daughter’s car seat from the car in the parking lot to the front entrance of Trader Joe’s, my knuckles hurt so bad. I couldn’t make it through a five-song worship set playing the bass. I couldn’t always make it through washing the dishes.
Now, I can do most things with medium amounts of pain or discomfort. I still can’t play a worship set, which deeply saddens me. My rheumatologist and I are exploring discontinuing the infusions because we’re unsure about their effectiveness after about a year of them.
Throwing up the white flag
This means I’m now at the point of giving up in terms of finding a remedy. I’m coming to terms with the fact that I may have joint pain and arm numbness for the rest of my life. I worry that it will get worse as the years go by, and I won’t be able to do things like sleep, type, drive, exercise, or pick up my one-year-old daughter (I do these things now and it hurts every time, but it’s bearable).
But I’m not giving up the long-term game. I can’t. To give up just because we can’t find the right medication means giving up on my family. And I can’t do that.
Doubling down on well-being
“Diet and exercise.”
It’s what we typically read is the remedy for nearly every ailment. Yet none of the doctors or other medical professionals I’ve encountered along the way have said much about this. Not even my GI doctors.
They’ve told me about stress as a contributing factor, but haven’t really suggested ways to remedy it.
So I came up with a plan on my own. Because I want to be there for my wife and daughter, and be able to enjoy activities with them instead of sitting on the sideline.
Here it is:
- Consistent quiet time with Jesus. This will start my day in the right frame of mind and serve as a constant reminder that God’s got this, so I don’t have to worry. And that will reduce my stress levels, which will help me keep all that inflammation in check.
- Consistent exercise. Know when I last exercised on a regular basis? Never. I’ve talked about it a lot. I’ve made dozens of attempts with cycling, running, lifting, sit-ups, and other methods and never stuck with them. Sometimes out of laziness, sometimes out of joint pain, sometimes due to the ridiculous Phoenix-area heat, sometimes because I didn’t have time. I’ve always made an excuse. But now I’ve started an easy bodyweight exercise routine that only takes twenty minutes a day. And once I’ve started to get into shape, I’ll move up to other types of routines.
- More quality time with my wife. In an earlier article, I talked about coasting in my marriage. Part of it has been that I haven’t been proactive in finding ways to spend more time learning more about her. So we’ve started a one-year Bible reading plan where we get to hear each other’s thought processes as we read — what better way to get to know each other? And we’ve also coupled this with a new “date night conversation” topic once a week.
- Structure. As a stay-at-home dad who is also trying to launch a small business and volunteer in multiple church ministries, life gets crazy. So I’ve structured and prioritized my days, which keeps me motivated, less stressed, and in an all around better mood. Which is all good for keeping away inflammation.
- Moving on. I’ll probably always deal with chronic pain. I’ve dwelled in it in the past, and I still do sometimes. But if I define myself by who God made me to be and not by my pain,I know I have a much better shot and living a life that is significant in how I contribute to God’s kingdom.
