Tag Archives: Chronic pain

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.

Did Jesus Come to Bring Peace?

Some people say that Jesus was a great teacher. Others say that he came to demonstrate love. These are true, but what did Jesus say? He stated, “Do not think that I have come to bring peace to the earth. I have not come to bring peace, but a sword.” (Matthew 10:34 ESV) Isn’t this contradictory? What does this mean?

This certainly doesn’t sound like Joel Osteen’s namby pamby Jesus. The kind of sniveling god that wants our attention so badly, he grants us our best life now to buy our affection. I don’t know about you, but I have numerous difficulties in my life. I deal with chronic pain and will likely never see a pain-free day the remainder of my life. I’m not whining. I’m just stating a fact.

Everyday, people deal with suffering and loss. What about their best life? Is the six year old girl with leukemia living her best life now? I digress, but Osteen is selling people a false Jesus. Jesus is less concerned with your material wealth or physical health or comfort than he is with your soul. Jesus did not come to bring peace, but division. (Luke 12:51)

What is the cause of this division, anyway? Jesus once said, “Whoever hates me hates my Father as well.” (John 15:23 NIV) He said that after he told the disciples that the world will hate them. That really is the crux of the matter. Either you love Jesus and are in opposition to the world, or you belong to the world and hate Jesus.

I once belonged to the world. I was a pseudo-Christian, where I outwardly professed my faith (rather meekly in mixed company), but I lived as an atheist. Jesus had no impact on my life. As a matter of fact, I ridiculed real believers and denigrated God if it meant ratings. (I was a disc jockey at a rock station.) I clearly remember what I was like. I thought I could just wear the moniker and continue business as usual.

John 9:39 resonates with me. “Jesus said, ‘For judgment I came into this world, that those who do not see may see, and those who see may become blind.'” I now realize that I was blind most of my life. I can also see many that profess their sight, when, in reality, they cannot. I’m reminded of the episode of House M.D. where Foreman contracts some crazy disease where he goes blind but his brain thinks he can see. Many think that they can see, but all they see is a poor facsimile of Jesus. Most notably, it’s Prosperity Jesus.

The whole idea of the cross seems ridiculous to unbelievers. 1 Corinthians 1:18 states, “For the word of the cross is folly to those who are perishing, but to us who are being saved it is the power of God.” This is something I can’t explain. I remember I mentally “accepted” Jesus, but my heart was dead. Only after I was broken both physically and spiritually could I understand what it meant to be saved. It is transformative. Jesus came not to bring peace, but to give life.

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.

Salt and Light

The past couple of days have been harrowing as my bones and joints hurt.  I don’t know if this is a side effect from my Humira injection Tuesday, or if this is just a novel approach my body is taking to share the joys that are chronic pain.  Nevertheless, there are more important things in life than my discomfort.  I have spent a lot of time thinking about friendships that I have, or at least perceive I have, and it appears that there are essentially two types of friends.  There are those that are genuinely concerned about others (including you and your well-being) and then there are those that are wrapped up in their own little worlds that they cannot be bothered with anything other than their pity party.  (I have not forgotten that I have my fair share of pity parties due to my chronic pain.  I even had a perpetual pity party once.)

There are no hard and fast rules, but generally speaking, my Christian friends take the time to ask how I’m feeling.  They have genuine concern for my health and show concern for others.  Most of the time I don’t feel like talking about my ailments as I already have to endure them.  I don’t care to suffer them again by discussing them.  These are the friends I prefer to surround myself with, though.  Who wants to surround themselves with a narcissistic man-child who is financially secure, yet cries himself to sleep because he cannot have his way.  (I’m not trying to sound mean, I just have a tendency to be more blunt than usual when I’m in excruciating pain).

This particular friend has no foundational concept of right and wrong as I explored earlier.  It’s more of a lack of conviction because he cannot take a stand on any point either out of fear of being wrong or out of hurting someone’s feelings.  I also wrote about him in the Fallacy Factory because I was amused by the sheer number fallacies he invoked to support his reasons for discounting Christianity.  Everyone has a right to reject Jesus Christ, just reject Him with a well-thought reason instead of rehashed fallacies you read on some half-baked atheist website.

I’m interested in his change in demeanor as I changed from a profane heathen to a Christian.  We’ve probably been friends a dozen years or so, and in the years of my binge drinking and erratic behavior as a disc jockey, we got along pretty well.  He even attended my wedding in some perfunctory capacity.  I’ve always known him as one of the biggest God haters I ever met as he went out of his way to be offensive to anyone with any Christian sensibilities.  At that point in my life, I think I just laughed.  The subject matter isn’t what was funny, it was the reaction.  He could blaspheme God with as much enthusiasm as he could stomp around like a five year old after a pimple-faced teenager forgot to super size his order at the drive thru.

These past five years since my conversion, I have seen a conversion of sorts in him as well.  There was the time he “tried” Christianity.  I don’t even know what that means.  You repent of your sins, you put your trust in Jesus, and the Holy Spirit “will remove the heart of stone from your flesh and give you a heart of flesh.” (Ezekiel 36:26 ESV)  This is not something that you put on like a pair of skinny jeans.  Since Christianity was unsuccessful, he has embraced post-modernism wholeheartedly, and all paths lead you to the Supreme Being (a very impersonal name which seems to assail the very personal nature of God).  Let me rephrase, “All paths lead to the same place, but not YHWH, or the God of the Bible, because I have read a couple of chapters and found some discrepancies that I refuse to investigate further to see if these are just apparent inconsistencies, or they are actual proof that the Bible is errant.”  In short, he has come full circle.  He still rejects the one true God.

I think what bothers me is that I poured my life into him and another friend for three years so that hopefully they would come to know the truth of Jesus Christ.  This friend spent every opportunity heaping abuse, and even threatened to murder my pastor because I offered to set up a meeting so he could have some of his questions answered.  Looking back, it’s quite comical as he was ashamed of his behavior, but he always phrased his apologies as non-apologies.

He would say things like, “Well, things got out of hand and I said things that I shouldn’t have.”  Never a simple, “I’m sorry.”  It is always a rationalization, and the instant you think you might get to the moment where the friendship can heal, the conversation is deflected.  I wonder how my wife would react if I told her some rationalization.  When I’m wrong, there is only one thing that can be said:  “I’m sorry.”

My other friend that I have spent a lot of time with is moving cross country today.  I’m glad for him that he found a new job that pays better.  That was the reason I was given.  Normally, he would wax poetically about how this new job would help him express himself better, or how he will not have to sell out his convictions, or maybe the perks are better.  This time, the pay is better.  I have seen him traverse the country in pursuit of more money, more freedom, just more of something.  Through my chronic pain, I have been trying to demonstrate that there is more to life than money, or fame, or [insert idol here].  He never even said he was moving for happiness.  Only money.  We’ve been friends for almost seventeen years and he didn’t have time for a quick lunch before he left.  Packing the U-Haul wasn’t something that thrust itself upon him, either.  He accepted the job two weeks ago.

I have a number of close friends, but God has burdened my heart with these two jokers.  I have changed so much, I don’t think they even like me anymore.  Nor do I care.  My job isn’t to affirm their lifestyles or faulty belief systems, or to tell them how awesome they are when they do things that are an affront to God.  My job is to be salt and light.  John MacArthur said, “The world may hate us and persecute us, but the world is absolutely dependent on us being the influence and the verbal manifestation of the Gospel of God.”

I’m reminded of Luke 6:22, “Blessed are you when people hate you and when they exclude you and revile you and spurn your name as evil, on account of the Son of Man!”  Maybe their feelings aren’t so caustic.  Well, maybe one has destructive feelings with the whole pastor-murder thing.  In any event, God still has not lifted my burden of unending physical pain, and He may not free me from these burdens, either.  After all, “Christ died for the ungodly.” (Romans 5:6 ESV)  That includes me.

CC image courtesy of Itamar Grinberg on Flickr.

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.

This Advice is Worth at Least Three Cents

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When a tornado victim that loses everything can cope better than you, it may be time to put on your Yoda Underoos.

Stop whining. Quit crying. Do you really think you deserve special consideration?

Don’t worry, I don’t have a defeatist attitude. After years of therapy, discarding the bottle, and finding Jesus, I finally understand. Do I really need to wring my hands over what my dad did to me when I was eight? No, he didn’t molest me. I had my share of whippings, though. My dad flailed his belt like he was swinging for the fences. But that was a lifetime ago.

We cannot always control our circumstances. We can, however, decide if we are going to have a pity party. How many times does someone have to cry about their childhood before they crawl out of the crib to become a man? For me, it was many years. I finally understand that sometimes you just have to suck it up. I received that advice many times before. I just wasn’t listening.

I dole out the same advice to other crybabies. Seriously, do women find a man attractive when he whines about not finding a girlfriend? I doubt it. Sure everyone wants to climb on the pity train occasionally, but there was a time when I just couldn’t step off.

I speak from experience that crying about your woes is useless. Just take your problems to God. Set them at His feet.

God will provide us with what we need. If you are in a valley, you were put there for a reason. God has many reasons to put you there. Just trust in Him.

When science couldn’t cure my chronic pain, I only had two options. One was a bullet. I chose to turn to God. I’m not saying that God cured me and now I’m a ballroom dancing queen. I still have the pain. This is a burden I must carry, but God has promised He will always be with me. As for the other, I can’t be a dancing queen. Those tiaras make my butt look fat.

Life is hard and we are hit with a myriad of problems, but does ruminating help? I don’t want to sound harsh, but the time comes when you have to put on your big boy Yoda Underoos and move on.

I can barely remember all of those hurts I carried around now. I can look ahead to my future now that I’m not bound by my past.

This post is written in response to the Daily Post’s writing prompt.

A Harsh Sentence

CC image courtesy of Aapo Haapanen on Flickr.
CC image courtesy of Aapo Haapanen on Flickr.

Have you ever had the feeling you are doing time? Like you’ve been sentenced and you hope for an early release? Life sometimes feels this way when you have chronic pain.

I hate to bang the same old drum. I’m certainly not trying to gain sympathy. It’s just that it tends to be cyclical. Flare up periods where the pain is intense followed up relatively calm days where you get lost in the fog.

Have you experienced the fog? It’s actually quite nice. You can’t remember much so there’s less anxiety. If you are a control freak, you’re in trouble. You can go ahead and ratchet up your angst because you are now officially out of control. I’ve doubled up my meds because I forgot that I took them ten minutes prior. I’ve even forgotten where I parked. That one has happened a lot.

There was a time where I thought I would be cured, but my expectations aren’t what they were five years ago. I’m guardedly optimistic that my rheumatologist will find the right diagnosis, and if he does, there are treatments to mitigate the damage to my joints. I can anticipate less pain as well.

I have it easy, though. I spend much of my time on the couch eating snacks. My family got the raw deal. I’m sure Heather never anticipated a cripple for a husband when she repeated her marriage vows. Technically, I guess I’m not physically challenged as I don’t have a blue placard to hang on my rearview mirror. Yet.

Last week, Heather told me about how my oldest daughter felt about my predicament. Alli questions God because it’s unfair. I’ve learned that it is unfair, but God isn’t fair. I’m thankful for that. If God meted out justice based on fairness, we all would be condemned. I’m trying to find the words to have that conversation with her.

I need to tell her that my affliction is because of God’s immense grace. My deep relationship with Christ is because of my pain. It’s a little hard to explain the full scope of what I mean, but I hope that I will be able to help Alli understand.

I’ve been doing time for 1,654 days. I’m expecting tomorrow to be a good day. The weather is supposed to be nice.

Written in response to the Daily Post’s Weekly Writing Challenge.

Coffee Pancake Dreams

(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?