Tag 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.

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Another Perspective on Sin

It’s interesting how we view and rationalize sin.  Sometimes we tell ourselves that God wants us to be happy.  To maintain that position we must completely throw out 1 Thessalonians 4:7.  Why should we try to be holy, anyway?  Joel Osteen sure makes Christianity sound easy with a limp wristed god that will give us a fancy car just so that we will bless him with our presence.  How can anyone even want to submit to an impotent god that will shower us with gifts so that we will spend time with him?  Oh wait.  We don’t.  Even people that subscribe to Osteen’s brand of Christianity probably are more concerned with what God will do for them than what God has done for them.

We can fall into another pit when we believe that God made us this way (whatever this way happens to be), so God must be pleased with our current fallen condition.  As a matter of fact, since He made us this way, wouldn’t our present condition be more desirable than holiness?  I have heard the argument, “I was born gay, therefore God made me this way.”  I can just as easily say, “I was was born with a predilection to alcohol, so if I choose to be a drunk it is because God made me this way.”  The rapist can cay that they were born with these tendencies, so ultimately, God created the rapist.

If this argument was valid, Paul would have not addressed the Church in Corinth with, “Or do you not know that the unrighteous will not inherit the kingdom of God? Do not be deceived: neither the sexually immoral, nor idolaters, nor adulterers, nor men who practice homosexuality, nor thieves, nor the greedy, nor drunkards, nor revilers, nor swindlers will inherit the kingdom of God. (1 Corinthians 6:9-10 ESV)  So was Paul mistaken when labeling certain people as deviants?  Who is right?  Are Paul’s words divinely inspired, or should I lean upon my own understanding? (Proverbs 3:5)

I’m also intrigued when someone resorts to pragmatism as a defense to homosexuality.  Usually, the argument is meant to divert the attention from homosexuality to adultery.  I agree that adultery is sinful and should be addressed, and at least in the case of my church, these matters are dealt with in a biblical manner.  Notice that there is no argument that adultery is sinful.  When someone who supports homosexuality by equating it with the normalization of adultery, he just admitted that homosexuality is a sin.  Otherwise, he would have defended adultery as natural, or preferable, but would not assent to the fact that it is sinful.  What was 1 Thessalonians again?  The ESV states, “For God has not called us for impurity, but in holiness.”  That sounds nothing like “adultery isn’t that bad or God reveres homosexual practices.”

From our perspective, we may try to minimize our guilt.  Is lying really all that bad?  If lying is okay in certain circumstances, then maybe adultery is acceptable.  Afterall, illicit sex isn’t really immoral (as long as no one gets hurt and both parties want to engage in sexual deviancy).  From there, it’s not a stretch to say that homosexuality is natural, and maybe even more than just an alternative lifestyle.  But is this our view of sin or is it God’s view?

The only thing that matters is God’s perspective regarding sin.  If sin wasn’t so deadly, we would not have continuous warnings.  Paul states, “Now the works of the flesh are evident: sexual immorality, impurity, sensuality, idolatry, sorcery, enmity, strife, jealousy, fits of anger, rivalries, dissensions,divisions, envy, drunkenness, orgies, and things like these. I warn you, as I warned you before, that those who do such things will not inherit the kingdom of God.” (Galatians 5:19-21 ESV)  The issue at hand is not merely homosexuality.  The problem is with all sin.  We are called to be holy and we will be judged accordingly.  All sin is unnatural.  They are abominations, yet we try to normalize them because we believe that our feelings are more important than our God.

CC image courtesy of Bront Nolson.

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.

Operation Love Your Neighbor

Heather and I were supposed to go on our annual mission trip to Honduras. The previous two years have captured our hearts and we have been privileged to be able to go and share the Gospel. It’s quite challenging to spend time with children that don’t even share your language. We thought we were getting on a plane to bless some third world children. Now I know that the blessing was ours.

We had trouble raising funds this year as my ankylosing spondylitis limited my ability to cook. I have no idea how many lasagnas I made the previous two years to fund our trips, but I’m glad to have a skill that translates into mission work. We just have a head start for next year.

Instead of leaving the country, we went to a neighborhood in our own town. With assistance from Common Ground Community and many friends we were able to launch Operation Love Your Neighbor. We have typically prepared and served a nice meal one Thursday a month for the past three years. We continued that tradition yesterday and served up a delicious meal of pork loin, roasted potatoes, green beans, and banana cake. We continued today with a nice spaghetti lunch and an afternoon of teaching 22 kids the love of Jesus. Tomorrow, we will conclude the week with a morning walk to visit some homeless friends.

This week has reminded me that service doesn’t require trekking around the world. We can serve right where we are planted.

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.

Even A Monkey Can Do It

I’ve been pretty hacked off today because I screwed up my Humira shot this morning. I put it in a cooler to bring it with me to Mississippi so I could take it today. On schedule. I never take anything on schedule. I usually take too much of any medicine I need to take and can never remember to take it on schedule.

I wanted to take it early but Heather thought taking it early wasn’t wise in case I had some unfortunate side effects while I was on the road. It was good advice, but I forgot how to take the shot.

I left the directions at home and in my morning stupor, I fumbled around and thought I took the shot. The shot hurt, but not like I remembered the first time. I tossed the apparatus in the trash and continued getting ready for my day.

I began wondering if I took the shot properly because there was no burning after ten minutes. Come to think I it, there was no burning. I fished the apparatus out of the trash and began fiddling with it.

Sheowccaaaaow! The medicine started shooting out of the pen. Fifteen hundred dollars sprayed all over my hotel room. I’m paying for that error as my aches have been creeping back the past four days or so. I’m sure my joints are going to be screaming even more tomorrow.

Only thirteen days to overcome until my next shot. I’m going to read the directions every time I take the shot now. Just like the directions said.

I thought, only a boob is stupid enough to screw up this little injection.

I know, I am that boob.