I’m a couple of weeks into another flare up. Like all other flare ups, I cannot see the end. I’m reminded of when I wrestled my brother in the pool. That moment he got the upper hand. That moment he had me underwater. I remember the burning lungs and the panic. I remember the struggle for just a breath of air. Oh, that brief respite that is unceremoniously interrupted by another trip under the surface. That’s what we did for fun. We tried to drown each other.
I’m laying on the couch because my knees are throbbing, my left sacroiliac joint feels like it’s crushed under an elephant, and my lower spine–my bones feel like they are burning. I just need a short hiatus to catch my breath. I’m drowning and I’m at the mercy of my body in revolt. You would think that you could grow accustomed to chronic pain. Maybe some do, but I can’t. I cannot see beyond this veil.
I’m told that people outside my prison cell thrive and enjoy life. I just want to catch my breath before I go under again.
I told my physical therapist the other day that this angry flare-up makes me want to drown myself. She asked, “With vodka?” I replied, “No, in the tub.” That is still apparently serious voodoo in the medical field.
I was only half-joking, but she told me to call them if I ever feel that way again. I told her that I’m not going to do anything–I’ve had chronic pain for six years and I always pretty much feel that way.
I’ve dealt with these thoughts since I was five or six. They are only magnified now that I cannot escape this cloak of agony. Let me be clear–I am not going to harm myself. Still, the endless loop in my mind isn’t puppies and rainbows.
I push those thoughts out almost daily. I don’t dwell on them. They invade my mind. And the images are graphic. Anyone who has dealt with terrible pain has struggled to hang on just five more minutes. Then another five minutes. You wake up one day and realize that five minutes turned into a year. Then two. Now six. I told my wife last Saturday that I don’t know if I can do this another thirty years. I’m only forty and every day is a marathon, yet I still have hope.
My first Remicade infusion was April 20. My second was May 7. I’m taunted by short bouts of relief. I’m aware that it can take three months to begin to enjoy the effects, but when you are in the middle of a flare up, you can’t even see thirty minutes into your future. You can’t see beyond the pain.
At times it feels like my lower spine was smashed with a framing hammer. My hips don’t feel much better. At least I’m reminded of my disease because too many days of relative comfort make the pain fade into a fog where you can’t quite grasp the enormity of the crushing torment. That is perhaps the greatest gift. Those are the days where I’m completely disconnected from my illness because I can’t quite remember how crippling it feels. The memories rush back as you stagger like Frankenstein, though.
It feels like I made a mistake when I made the leap from Humira to Remicade. Humira works for me, but I dared to try something new to see if I could feel more normal. I’m drifting in agony and my dad decides to text me about my sister. About some sort of reconciliation. I’ve played that game before and boundaries are more important than dealing with something hopeless. Don’t get me wrong. I wish her the best, but we have never been close. We are strangers linked by blood. After you sift the details, we are still strangers.
I rattled off a laundry list of what I endure daily, and to look at it, it is rather depressing. I told him that I haven’t had a pain-free day in almost six years. I told him I have days where I don’t know how to survive another thirty minutes, so if God grants me another thirty years, that is 262,800 more hours of desolation. Sure, some days are better than others, but the pain always lingers. It prowls waiting to consume me. And I’m devoured moment by moment.
I don’t think he ever considered my problems. He just wants to repair a dysfunctional family before he dies. Good for him. He just needs to pick a new family on which to focus his efforts. (I hope that last sentence was properly structured. I was thinking of grammar nazis and prepositions. If not, I really don’t care as I think an alien is erupting from my spine right now).
When I wake up in the morning, my focus will be counting the hours until I can go back to sleep. An Ambien induced slumber that allows me an unconscious respite. My little slice of heaven.
It has been a couple of months since I have had a full-on flare up. Maybe even three or four months. I gave up counting time from the last flare up. I just try to enjoy my newfound mobility.
I’ve been on Humira for some time now. It is certainly no panacea, but it definitely helps. I’m actually surprised that I have been back to work for two months now. It can be physically demanding, and when I get home from work, I crash on the couch the rest of the day, but I’m able to do it again the next day. It is gratifying as I haven’t worked much over the past four years.
I’m switching to Remicade to see if it does better as I still have nagging pain in various parts of my body. My left SI joint has been aggravated pretty much since I went back to work. I have yet to undergo my first infusion, but I hope for some improvement. I can always go back to Humira if it doesn’t work.
I’ve also lost fifteen pounds over the past couple of months. That makes thirty pounds over the past year or so. I’m hovering around 195, but am working to get down to 180. Less weight = less stress on my joints. That, and I’m looking svelte. At least that’s what I keep telling myself.
The moment when it feels like your body is eating itself alive is when I am reminded that suffering is a gift. I know that sounds masochistic, but it’s not. I. Hate. Pain. I avoid it if I can.
Much of the time I’m like a cranky bear shot up with rock salt and those days are especially hard for my family. I can declare a time-out, but that doesn’t stop the world. My family still needs me even when I’m at my worst.
Some days I’m able to move around with fluidity. There is no hobble. You will hardly see a grimace. Other days are unpleasant. Days like today.
My feverish knees feel like they are on fire. My ankles feel like the synovial fluid was replaced with pulverized glass. Tendons in my legs are tight. They feel stretched. Maybe they are. I was dealing with a torn meniscus a couple of months ago.
Then there is my back. I’m trying to stretch my back to maintain mobility in my spine. My vertebrae feel heavy and sluggish. Have you ever held two bricks against each other? They do not readily slide against each other. They grip each other and you have to use some effort to push them against each other. I think that is the drag coefficient or shear viscosity. It’s just a lot of math telling me that bricks don’t glide easily. My spine feels as if the vertebrae are made of brick.
Writing about my ankylosing spondylitis seems to be cathartic. Having a conversation about how I’m feeling is unhelpful. It’s actually quite boring. Usually I’ll grit my teeth and say, “I’m just terrific.” That tells it all.
I’m shuffling like a seventy year old today, but in spite of my physical problems, I’m reminded of the hope I have in Christ. Unbelievers can’t understand. They are angry for me. They stamp their feet and squall that it’s not fair. My typical response is something like this–
Of course it’s not fair. Should I wring my hands about my problems? Where in the Bible does God say that He is fair? If anything, God is demonstrating his love.
Consider Hebrews 12:7. It says, “Endure hardship as discipline; God is treating you as his children. For what children are not disciplined by their father?”
Or James 1:2–“Consider it pure joy, my brothers and sisters when you face trials of many kinds…”
Paul has insight on this matter as well. In Romans 8:18, he says, “For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us.”
Another helpful passage is 2 Corinthians 4:8-10–“We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed; always carrying in the body the death of Jesus, so that the life of Jesus may also be manifested in our bodies.”
I wish I was Mr. Eloquent and could recite those verses from memory, but I more or less am able to explain my attitude towards my physical adversity. I also am quick to point out the fact that my pain drew me closer to God.
I was given a gift. It is more than I can bear. It always is. I’m reminded of that useless platitude that God never gives you more than you can handle. That’s nonsense! If you are able to bear the hardship, you don’t need God.
I’m glad it’s more than I can bear. That way there is hope that others may see Christ working in me.
(I wrote this last night about forty five minutes after my nightly dose of Ambien. I couldn’t figure out how to post it last night, but I’m impressed that I had the presence of mind to focus on pancakes).
I’m laying on the couch feeling like James Caan on Misery. Remember when he was hobbled by that crazy fan lady? I’ve been on my feet all day and most of last night.
In my arthritic haze I think about food. Who am I kidding? I always think about food. Chronic pain aside I’m thinking about pancakes. My ambien is making me feel a bit off but you need to try these coffee pancakes.
These pancakes are simply amazing. Even my four year old loves them, but she already loves coffee ice cream. I guess it’s not much of a stretch. Besides, who doesn’t love pancakes?