Category Archives: Ankylosing Spondylitis

Another Day With A Dog’s Eye View

This is one of those days I spend laying on the floor staring at the tv. I’m not really watching it. It’s just a distraction. A distraction that isn’t all that effective as I’m still splayed out on the floor. I’m facing an opponent that will not be second fiddle to anything. It doesn’t matter what I want to do. I’m on the floor trying to distract myself from the pain.

This is just one day in the life of a chronic pain sufferer. The label doesn’t matter. My label happens to be ankylosing spondylitis. I like to shorten the name to make it more intimate. After all, I spend more time with AS than I do with my wife.

The kids just came home from school. They haven’t even been home for two minutes before I start barking at them. Conflict and stress have a tendency to ratchet the pain from “unbearable agony” to “I want to put a gun in my mouth.” And no, I don’t own a gun. I’m sure I’ll be awarded Dad of the Year any day now.

I took my Humira shot yesterday. That is four days before my next scheduled date. I guess that’s about normal for me. I metabolize medicine quickly. If I have dental work done, I usually get a double dose of Novocain. I’ve also had shots during procedures to keep the numbness alive. 30 minutes after I leave, the numbness is just a memory.

My last shot was last week. I had the shot Monday night, and the next day I was on a whirlwind road trip from Louisiana to Alabama. Strike one. I was back in town Wednesday evening. Long periods of immobility are bad for my joints. They stiffen up, but this time, before I had time to recover, I spent Thursday in the kitchen to bake up 60 dozen cookies. I was in a commercial kitchen so it only took about six hours. I was on my feet and constantly moving. Strike two. The pain has been escalating daily to a full on fury. I could tell my last shot that should have been helpful for two weeks had lost all benefit nine days later. That’s strike three. I hope to start feeling some relief by Sunday or Monday.

I have about 6 days a month where I feel really good. Then there are the days before and after the shot that either ramp up or taper off from the good days. I could have anywhere from 12-16 days a month like this. These are precarious times where I am pretty mobile, but may enjoy the presence of low grade fevers or I may have some angry joints where the others are still drowsy. The remaining 8-10 days a month are nothing but horror.

My feet and ankles are cool to the touch but they burn as if I’m wearing menthol socks. If it’s not a cool burn, my lower extremities are hot with a more pronounced pain and redness. The knees only vary in intensity from a mild ache to a sharp pain that may be compared to burning your leg to a stump with acid. Then we have the hips, shoulders, and neck that like to garner attention, but my lower back usually squeals loudest. It reminds me of my five year old’s hissy fits that I just let her have whatever she wants as I am assaulted with the feeling of some cosmic finger nails scraping against my chalkboard soul.

My family has it worse. My wife has a cripple for a husband. I look normal, so I’m sure she fields comments that she is supporting a lazy deadbeat. My kids have an irritable parent who isn’t driven by love or compassion. The goal is pain-avoidance. Drama increases the pain. Even my dog has been getting yelled at lately. What’s the deal with the barking and snarling because she heard the UPS man?

It’s great when I’m feeling well because I forget how bad the pain has been the past days and weeks, but when I’m hurting, I can’t remember those fleeting moments of bliss. I cannot visualize either if I’m not experiencing it. Either I’m drowning in the sewer or I’m laying under a shade tree on a nice sunny day with the smell of BBQ wafting in the air and the sound of kids frolicking in the distance.

Maybe tomorrow will be better. Maybe I’ll spend my day on the couch. I better not get carried away and start making big plans. This floor isn’t too bad.

We Live in a Civilized Society?

I was reading “Judges: Such A Great Salvation” when I came across an interesting sentence regarding God’s judgment. Davis stated, “We need to beware of thinking that God avenges only when he makes a racket.” (p. 125) It caught my attention because when we consider God’s judgment, we usually think of natural disasters or some other cataclysmic event. We forget that God’s wrath may be poured out slowly over time.

Such is the case in America today. We might surmise that God is exercising a judgment of abandonment with the rise of immorality. We are a culture of death where we kill the unborn and the infirm. We even sanction doctor-assisted suicide as a sort of pre-emptive strike.

We also see all manner of sexual sin from adultery and pornography, to widespread acceptance of homosexuality. The apostle Paul writes, “Therefore God gave them up in the lusts of their hearts to impurity, to the dishonoring of their bodies among themselves, because they exchanged the truth about God for a lie and worshiped and served the creature rather than the Creator, who is blessed forever! Amen.” (Romans‬ ‭1‬:‭24-25‬ ESV) This is the world we live in.

It is apparent that morality is on a downward trajectory and it seems that God is judging America, not with a loud bang (at least not yet), but slowly and methodically where we are ensnared and are not even aware of it.

Or I may be mistaken and the normalization of sin might actually be evidence of an intrepid and virtuous society. A society where somebody’s “choice” trumps the sanctity of life. A society that advocates the wholesale slaughter of unborn babies for reasons that can be as hollow as being inconvenient to being as depraved principled and idealistic as being favorable to the unborn baby because we subjectively decide that being born would infelicitously affect his quality of life. See, eugenics is propitious not only for society at large, but for the aborted child as well.

We have fallen so far that we believe (at least in limited cases at this time) that murder is advantageous to the murderee. Or to use an actual word, a favor had been done for the victim beneficiary.

I must live on another planet because I thought a favor was something good like cutting a little old lady’s lawn without compensation. I suffer from chronic pain and am unable to work, and I anticipate this particular brand of goodwill will expand from terminal patients to other patients with a questionable quality of life. Forgive me if I seem ungracious, but I would like to decline this favor in advance. I wonder if benefits such as these will ever become mandatory.

An Anniversary of Sorts

Today marks five years since my metamorphosis. In my Kafkaesque world, I haven’t developed into something beautiful or desirable like a butterfly, but my devolution can be more appropriately imagined as one who transformed into a cockroach. A stroll from order to disorder. A life of good health that descended into an existence of chronic pain.

Five years ago I underwent a simple elective procedure that changed my life in ways that I had never bargained. I had a vasectomy because I’m not Dick Van Patten and three is enough. After the pain didn’t subside after a few days, I sought the advice from a new urologist. It’s as if I won the lottery as he said my condition is exceedingly rare.

I told him if I had been advised of the possibility of crippling pain I may have avoided a vasectomy altogether. This doctor who performed an epididymectomy in a failed attempt to release me from the pain, made an analogy that made my apparent informed consent conundrum make sense. He humorously told me that there is a small chance I may fall off the operating table in the middle of a procedure, but the odds are so ridiculously small that he doesn’t inform his patients of the risk. I actually thought his response was hilarious.

Notice how I said his attempt to relieve me of my pain was a failure. If we fast forward to the end of the rainbow, I had some experimental procedures and eventually had an orchiectomy. And I still have pain.

Four years ago tomorrow marks the day I was hospitalized for a bleeding ulcer. For weeks prior I periodically woke up in the middle of the night with heartburn and a rotten taste in my mouth. This was the mother of all bad tastes and no amount of mouthwash could make it go away. I didn’t realize I had an ulcer until the morning I started my day with a sinkful of putrified blood. I still went to work because my wife thought I was being a wuss. I was hospitalized that afternoon and enjoyed a nice relaxing four days watching cooking shows while my diet consisted of nothing but broth and apple juice. (I like food so much that I enjoy it even when it is off limits).

I was also recently diagnosed with ankylosing spondylitis.  It is an autoimmune disorder that is unrelated to my original pain, but it is all too evident on days I’m only able to lurch about in my daily activities.

I completely forgot what today signified until I read Matt Walsh’s latest contribution.  I don’t follow the news very closely, but I’m now aware of a woman named Brittany Murphy who has terminal cancer.  She is going to commit suicide on November 1.  I’ll admit that I have no idea what it would be like to have a bleak future of pain that I cannot even imagine, but I have to agree with Matt Walsh that there is nothing noble in suicide.  I have lived with pain everyday for five years.  Some days are so excruciating that all I can think about is putting a gun in my mouth.  I get it.  Pain is horrible and sometimes I don’t know how I will survive another day.  Yet, my condition isn’t killing me.  I’m 39 and it’s entirely possible that I may live for decades with pain every day.

Walsh made an interesting point regarding euthanasia.  The assertion is that this woman is being brave by ending her life to escape the pain and indignity of cancer.  If that is true, are people who choose to endure the horrors of cancer until they are removed from this life any less courageous?  Or are they cowardly since their choice is the antithesis of Brittany’s brave choice?  I only consider this because I live everyday with pain.  Am I a coward to endure suffering?  As a Christian, I know that suicide is not a viable choice, but if there is a growing consensus for euthanasia, could there be a day when the choice is not mine to make?  Mind you, I’m unable to work, so I’m not a productive member of society.  Should productivity be a determining factor?  Will a day come when “useless” people are exterminated en masse for the benefit of society?

These are big questions that I have no answers for.  I was just reminded that today is my anniversary.

Tomorrow, I’ll celebrate with cake.

CC image courtesy of Finlayfox.

Are My Ears Deceiving Me?

Last week my wife had a glimpse of my world. Apparently, she had pleurisy. I had it once when I was around 12 and I still remember the staggering pain. I was caught unawares when she asked me rhetorically, “Is this what you endure everyday?”

I was astonished to hear that as I didn’t want her to be in pain, but she also revealed true understanding. She has carried me for almost five years on account of my chronic nerve pain. I was also recently diagnosed with ankylosing spondylitis. The back pain has been present for years. I just thought I had a crappy bed.

Nevertheless, this was the first time that anyone I know has expressed understanding. Sure there’s the sympathy and the empathy. There’s the prayers and the thoughtful looks. Friends and family regularly ask about how I’m feeling, but I’ve never been able to adequately verbalize my condition.

“I can’t imagine that you suffer this everyday.” I didn’t even know how to respond to that. Have you ever suddenly awakened in the middle of a vivid dream and you can’t determine where you are? Are you still dreaming? Maybe you were buried in a deep slumber that when you even forgot who you were when you were thrust into consciousness. That’s how I felt when I heard those words escape her lips. I didn’t know if I could trust my ears. Nobody has ever expressed anything that made me remotely believe that they knew my agony.

October 9, 2009 marks the fateful vasectomy, a day that should have ushered in a less complicated era. Instead, I live in a new world where pain is my timeless companion. After five years, I have a confederate who finally has a real appreciation for my condition. Thankfully, her pain has passed, but I’m glad that my problem isn’t a phantom. I’m not the only one who can see it anymore.

Consider It Pure Joy…

It’s not all fun and games dealing with chronic pain. It can also be quite expensive. After years of pain, I was finally diagnosed with ankylosing spondylitis a few months ago.

At first, I was prescribed Humira. I had one injection that showed promise. Two weeks later I sprayed the shot all over the room because I forgot how to operate the injection pen. Brilliant, right?

Due to insurance problems I was switched to Enbrel. My rheumatologist is a schemer that likes to stick it to the man. Enbrel and Humira have discount cards where you can pay as little as five bucks a month for your medication. The credit from the discount cards applies to your insurance deductible. I thought everything was going to be rainbows and unicorns until I learned that I still have to pay 40% for my medication until I have paid $5000 out of pocket. I know, it’s a terrible plan. Especially since we have private insurance and pay close to $700 a month for family coverage.

I’m switching back to Humira later this month because it seemed to work. Enbrel does nothing for me. After the discount card is applied, I’m going to start paying $426 a month for my medicine. It’s money we don’t have so we are going to eat more beans and rice. It will be money well spent if it relieves me of this pain, though.

I’m sure I’m not being very clear regarding this insurance debacle, but I really don’t have a clear understanding to begin with. Apparently, there is the deductible and there is a separate copay for medications. In a nutshell, it’s a lot of money with little return. Thank you Obama. This Affordable Care Act seems to make health care very expensive for families that work. In my case, my wife works 50-60 hours a week. I’m unable to work, so I’m essentially a housewife who does the cooking. The cleaning…not so much.

I’ve been shuffling like an old man the past few weeks. I try not to whine too much about my ailments, but I’m irritated when friends who have little to complain about start crying about not having a spouse. I could be wrong but I think women are a little turned off by desperation. Advertising your desperation on Facebook is a double turn off. At least he has the potential of finding a mate. I’m sure there is at least one woman in 1000 who are attracted to sensitive men who cry into their bosom every night. I can soak my wife’s bosom with my tears all I want, but I’m still going to be shackled with chronic pain.

I’m comforted by the fact that the Bible never says God promises happiness. With Him, you can be joyful which transcends all circumstances. James 1 teaches that trials of all kinds develop perseverance.

Besides, there’s something much more important than anything I endure. I was going to quote Romans 8:18, but I realized I already did that here.

Feeling Alive

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CC image courtesy of Gunnar Grimnes on Flickr.

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.

Hobble Like the Wind

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CC image courtesy of Wikimedia.

I remember much of what I saw on television when I was a kid. As I cope with my daily aches, I’m reminded of the commercials promoting arthritis medications. Not much has changed, but I remember my young thoughts. I was only five or six, but I was thankful that I wouldn’t have to endure arthritis when I was older. They would have a cure by then.

Thirty-three or so years later and I can tell I was mistaken. All of those Ben Gay and Anacin commercials with withered old people reflect a broken innocence. It was remarkable that I was cognizant of the deleterious nature of arthritis. I just gave science too much credit. I also remember conversations with my dad where everyone would have flying cars. At least we have the Slap Chop.

I like reading stories of other people with ankylosing spondylitis. It seems that everyone has their own combination of a litany of symptoms. I’m heartbroken to see those with fused spines. Their bodies are hunched and contorted, forever frozen in place. I wonder if that is my future.

The pain is constant and is exasperated by inactivity. It is exasperated by activity. I also have osteoarthritis in some of my joints and flat feet. The pain gets worse at night. I shuffle around like an old man in the morning.

My kids have a raw deal as I never feel well enough to participate in many activities. They take it in stride. They tell me to “hobble like the wind.”

I mentioned that I screwed up my Humira shot nine days ago. The insurance company has been difficult so I probably won’t have my next shot until Thursday. I’m ready to have a few consistent shots under my belt.

I’m encouraged by the fact that I will have a handicap placard one day. I’m also looking forward to the senior citizen’s discount at Denny’s. It seems that old people get all the perks. I say this facetiously, but I’m dead serious when I say I want a placard and a fifty five cent discount off my Grand Slam.

I forgot to mention that one day I’m going to get a cane with flames on it. Everything is faster with flames.

An Endurance Race

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Today marks my twelfth year of marriage to my beautiful wife. The first seven years or so were difficult as we were both bull headed heathens and refused to submit to each other.

Around five years ago, something special began to happen as we placed Christ at the center of our marriage. I’m more in love with my bride today than when we were first married.

The majesty of Christ has allowed our relationship to not just endure, but to blossom. As a blessing to our commitment, we have three beautiful girls.

I know Heather didn’t realize she would be caring for a physically broken husband, but in my weakness we can see Christ’s strength.

I love you, Heather, and I look forward to whatever we are called to endure. Even if you have to push me around in a wheelchair. I’d like to have flames stenciled on it, though.

And You Thought Nothing Good Came From Ankylosing Spondylitis

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Image courtesy of webmd.com.

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.