I’m having a tough day. It appears that I triggered another flare up with the travel and yard work I endured the past few days. The Humira gives modest relief for about three days after each weekly injection. Only two more days until my next one.
I’ve been caught in this chronic nightmare for six and a half years. I don’t think I can endure another twenty or thirty years like this. I did the math. I have endured constant pain for 17.5% of my life. If I see 63, I will have spent 50% in pain.
That’s a far cry from my aspirations of success and happiness in years past. Those are gone. Dreams are silly delusions reserved for children. Reality is cold and hard, and for the lucky ones, well, I’m reminded of Ecclesiastes:
“And I thought the dead who are already dead more fortunate than the living who are still alive. But better than both is he who has not yet been and has not seen the evil deeds that are done under the sun.”
Ecclesiastes 4:2-3 ESV
I know I may be taking this passage out of context because my oppressor isn’t a man–it’s my immune system that has turned against me.
Life is hard. The novelty is that we don’t know how much we will have to endure nor do we know how long it will persist. Regardless, I hope tomorrow will be better.
For five years, I have been battling chronic pain. My issues began with a botched vasectomy and I seem to have picked up new aches along the way. I don’t know if all of these issues are connected or not, but does it really matter?
My damaged ilio-inguinal nerve has generally calmed down, but over time I have been enduring increasing pain in my joints. My lower back has been weak for years, but I never paid it any mind. As a matter of fact, I was diagnosed with mild osteoarthritis which led me to ignore my back pain. What can you do about osteoarthritis anyway? Take NSAIDs? I can’t because I’ve already had one ulcer. I don’t intend to get another.
Then came the gout diagnosis. My uric acid level was over 9. My understanding is you want it below 4.5. My ankles felt like crushed glass. It had to be the gout. Maybe my knees were gouty. I chalked all of my lower joint pain to gout. Allopurinol should solve that.
As I became more aware of the different pain sensations and from my internet self diagnoses (believe me, there were many), I learned that gout typically doesn’t affect the same joints on either side of the body. I had white hot stabbing pains in my flat feet, but my knees and ankles had more of a crushing, radiating pain. There was no relief from the allopurinol, either.
By now I was so flummoxed I finally decided to see a rheumatologist.
Probable diagnosis: ankylosing spondylitis. It has a nice ring to it. Plus, my first Humira self-injection a week and a half ago feels promising. At 38, I still feel like I have the body of a 70 year old, but the pain is much more bearable. It always gets worse at night, but I actually had zero pain in my knees this morning. I have also been able to get around with relative ease in the morning the last few days.
It’s normally a chore to get out of bed. Oftentimes, I wake up and watch television at least a half hour before I dare to put my feet on the floor. It’s as if I’m beset with rigor mortis. Then, I get up to brush my teeth and sit on the couch awhile. The rest of my day consists of a trip to the grocery store along with another errand or two, picking up my oldest daughter up after school, and if I’m feeling especially spry, cooking dinner. Leftovers have been common as I haven’t felt like cooking lately. If there aren’t leftovers, the kids can have a can of ravioli or a fried egg. Or even better–we can have yet another supper consisting of boiled eggs. Four or five are quite filling. And I love eggs. A lot.
It’ll be 2 1/2 more months before I see the rheumatologist for a follow up. I’m sure he will make the diagnosis official. I hope there is an ankylosing spondylitis ticker tape parade.
Why a parade? I finally have a diagnosis! I’m especially blessed because my autoimmune disease is treatable. It’s not some stage 7 chemical burn on my brain where there is no hope at all. (As a general rule, if your brain is chemically liquified and drains out of your ears, that is an unfavorable diagnosis).
I’m thrilled. My wife is relieved. My kids hope the treatment will keep the pain at bay so I won’t be so cranky. Ankylosing spondylitis is no chicken dinner, but I feel like a winner. I have a diagnosis and a treatment.