Tag Archives: ankylosing-spondylitis

Two Sizes Too Small

Growing up, Christmas was a mixed bag. True, I got presents, but they came at a cost. Along with the gifts came strife between my parents–not just at Christmastime, the constant threats of divorce from my mom along with the manipulation from my dad kept our household in turmoil. It’s just that this nonsense was amplified around the holidays. They finally divorced when I was in my early 20s–about 20 years too late.

After I finally grew up and left home, I coped with the hurt by emptying bottles of booze. For years. During this time, I eliminated my parents and siblings from my life. That wasn’t difficult because we were never close. 

Maybe five years passed before I somewhat repaired what little relationship I had with my mom and sister. Up until around six years ago I was a godless heathen. I committed to attending my grandmother’s funeral four years ago before I realized that her son–my dad, would be in attendance.

Surprisingly, we made amends and he would remain in good standing as long as he would respect my boundaries. Sadly, both of my parents lost their minds November 4 by demanding that they bring my now-estranged meth-addicted sister for a visit. Against my better judgment, I agreed to this precarious arrangement under duress only for them to cancel their plans the following day replete with vitriol and shenanigans–all of this after I already told my children that they will be seeing three special gifts.

This partly why I’m typically grinch-like around the holidays.  The rest of my grinchiness comes from the pain from my AS which is my constant companion.

Fortunately, my family is going to Dallas this weekend to spend time with brothers and sisters in Christ to serve the homeless with Mercy Chefs. Through service, I’m reminded of the true meaning of Christmas which ultimately points to the cross.

So for those who have a nightmarish family, when your heart feels two sizes too small–look to the cross.

Drowning

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.   

From “The Message of Daniel” by Dale Ralph Davis
 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.

More of the Same–Only Worse

It’s days like this that really make it hard to live.  Even before I was stricken with ankylosing spondylitis, I found it exceedingly difficult persevere at times, but now it’s unbearable.  What happens when the pain gets worse?  Is life more unbearable?   

This was fifteen days ago. It was a Sunday morning and as you can see, it was a pretty good day.
You would think that once you reach the point where you cannot possibly bear any more pain, it increases.  It multiplies.  It goes beyond unbearable.  It shatters all notions of normalcy and grinds you to dust.

I’ve been dealing with a minor flare up for a couple of months, but the past week or two, the pain has been increasing exponentially where I’m continually thinking that I’ve hit my plateau.  As I unwrap a new day, I find that I was horribly mistaken and the previous day could easily be compared the greatest landmarks of my life–my wedding, the birth of my children, or the first time I tried hot chicken.

It’s times like these where I cannot hide from…myself.  I still have dreams and aspirations.  Granted, these have been muted as I have come to realize that my life has been forever changed.  Oftentimes, these dreams and aspirations have been reduced from the realistic (I mean who doesn’t want to be an astronaut), to the impossible–like twenty minutes of normalcy.

It’s funny that I have a disease that traps me inside a shell of myself.  It’s amusing that I’m cocooned in a broken body in which there is no escape.  It’s comical only because I am what I have always feared–a cripple.

Of the many things I have feared, two are notable:  fear of pain and fear of being trapped from within.  

I remember a small cut or insignificant burn could ruin my day.  It sounds ridiculous now that there is no such thing as life without pain, but if I stubbed my toe or skinned my knee, it was time to close up shop because my day was wrecked.  Life was on hiatus.  

When life wasn’t interrupted by bruises and scrapes I was occasionally overcome by the dread of living in a body that didn’t work.  More specifically, I was afraid of being paralyzed.  I still am because I know how quickly it can happen.

One Minnesota winter night when I was nineteen, I was outside in the snow with a bunch of friends.  I was teasing my buddy Shawn and the angrier he got, the more delighted I became.  Apparently, I went too far because he punched me right as I turned to walk off.  No warning.  I just remember the jolt of electricity that shot through my body as he punched me in the back of the neck.

I instantly dropped to the ground as my body folded under itself like a marionette.  My body was numb and I couldn’t move.  I went from surprise, to terror, to anger in about three seconds.  I was laying in the snow on my back with my limbs askew when I began cursing Shawn for paralyzing me.  I thought my neck was broken.

Between my shouts for an ambulance and my colorful insults, everybody thought I was playing around.  I’m surprised the neighbors didn’t call the police as this went on for ten minutes.  By then, I was getting my feeling back.  I was able to clumsily flail my arms like a drunken infant.  I was staggering, then walking in short order, but the experience made me even more fearful of physical disability.

So here I am today passing the time on the couch waiting for bedtime.  Tomorrow morning will arrive too quickly for another day of work followed by an afternoon of couch surfing.  I’m not going to assume that today will be my worst day, but I’m not going to hold my breath for a better one either.

Good News?

I’ve been on Remicade more than three months, now.  Before that, I was on Humira and Enbrel (not simultaneously) for nearly a year.  Because of my high deductible, I didn’t get an MRI when I was first diagnosed with ankylosing spondylitis.  Remicade obliterated my deductible so I finally had an MRI on my sacroiliac joints this past Monday.

My doctor advised me that it’s possible that the test wouldn’t show any inflammation, but today I received the news that I have inflammation consistent with ankylosing spondylitis. This is good news.  I don’t carry the HLA-B27 gene, so this shows that we are treating the right disease, we just haven’t found the treatment that works for me.  For starters, we are increasing my Remicade dose to 8 mg.

I don’t know if that will help as I think my problem lies in my superhuman metabolism.  Medication doesn’t stay in my system long.  The dentist has to give me extra novacaine and the symptoms still have nearly completely subsided when I get home–only a ten minute trip.  It’s the same with surgery.  I’m not aware of waking up in the middle of a procedure but I came close when I was ten.  I was at the oral surgeon pumped full of nitrous oxide. I remember hearing the nurse telling me to breathe deeply right as I was waking up so that more nitrous could be administered.  I’m sure it’s not very pleasant waking up in the middle of surgery.

If I could take Humira weekly I’d be in pretty good shape.  I remember around seven days out of fourteen where I was pretty normal.  The problem is that the medicine isn’t approved for weekly dosing to treat my illness.

All in all, it’s good news.  A pastrami on rye would be better, but I’ll take what I can get.

Just Like Paradise

The old David Lee Roth tune comes to mind this morning, yet it is antithetical to how I’m feeling since Thursday’s Remicade infusion.

This visit ended with a twist of sorts as my hips were injected with steroids in an effort to curb some of the pain.  Instead, at least for now, they are stiff and achy; it is reminiscent of having to chisel and pry and hammer a worn out strut.  (I am no mechanic, so any repair I make involves pry bars and hissy fits.

As soon as I complete my shift at work, I’ll be back in bed like the past couple of days.  This is only a bonus from my typical searing pain in my lower spine. My upper spine feels like it has been contorted by a gorilla.  I think farmers give their sick horses better treatment when they lead them out to a pasture, gun in hand.  And no, I’m not implying anything as I’m against euthanasia.  I’m not above whining, though.

I’ve been feeling pretty horrible the past six weeks or so.  I have had my share of hiding in the bedroom.  I’m just frustrated today.  

(Cue DLR) — THIS MUST BE JUST LIKE LIVING IN PARADISE.

Another Typical Day

Almost 2 1/2 months since my first Remicade infusion and I’m still trying to determine how much it is actually helping.  I just came off a flare up that lasted about a week and a half.  I’m still not feeling terrific.  Granted, I have had some days where I felt pretty good, but I don’t know if Humira is better or not yet.

Ankylosing spondylitis is a real bear and when my symptoms are excruciatingly apparent, they seem to be increasing in severity and scope.  My lower spine feels as if it is bathed in flames and the pain in my hips is increasing.  Then there is the newest symptom.  When I lay on my back, my chest hurts in the sternum area.  

I’m curious to know if you can stack immunosuppressants like bodybuilders do steroids.  I figure if I get some relief from Remicade and some from Humira, that could be favorable.  Granted, the risks are elevated, but why worry about the cancer you might get tomorrow if you are enduring crippling pain today?  

I’ll see the rheumatologist on the sixteenth when I get my next infusion. In the meantime, I’ll just lurch like Godzilla.

When Work Interferes With Laziness

I haven’t posted lately because I forgot how taxing a job can be.  I get up at 4:30 each morning, and it feels great to get off work so early in the afternoon, but I’m always tired.  It feels strange to get ready for bed so early in the evening.  It’s not that I really have an issue with getting up so early, I just don’t like to go to bed before 10 p.m.

It’s also a bit of a challenge spending most of my day on my feet.  My ankykosing spondylitis on top of my general sense of laziness is why I spend my free time lounging on the couch.  I’m switching from Humira to Remicade, so I’m hoping it will help.  Now if I can only get a shot to combat my laziness.

A Shattered Delusion

There was a time when my life was illusory and paradoxical.  I used to have a bleak outlook where I believed that my life was purposeless and I was wasting the years that had been given to me, yet I was certain that I was a pretty good guy purported by my strong character and perfect sense of right and wrong that would ultimately garner an exceedingly favorable afterlife.  On October 9, 2009, my life was completely upended.  I had a vasectomy, a relatively minor procedure that left me in crippling pain.  October 8, 2009 was probably the last pain-free day I’ll ever enjoy.  Interestingly enough, that fateful day was the most important day in my life.

I didn’t realize that one must be utterly broken to come to the Cross.  After all, I had already asked Jesus into my heart, was sprinkled as an infant, and was confirmed when I was thirteen.  I was in the system.  I was so saved that I didn’t even need Jesus.  At least I lived that way.

Deep in the hidden recesses of my heart I knew I was in big trouble but I told myself that I was a swell guy.  In comparison to everyone else, my flaws were so minute that God could easily overlook them.  My foibles were infinitesimal in comparison to the godless heathens running the streets.  I was a terrific catch for God.  It’s not like I murdered anyone, right?  Or have I?  In Matthew 5:21-22, Jesus tells us that unrighteous anger is murder in the heart.  Oops.

Then there is the lying, the stealing, the dishonoring of my parents, even adultery of the heart.  That’s a tough one to swallow, but Jesus makes it clear in Matthew 5:28.  If we delve into the OT, Hosea illustrates that we are all adulterers to God.  The marriage of Hosea and Gomer is a picture of the marriage of Christ to his church.  His unfaithful bride. Our broken vows.  An ongoing affair where we turn to our success, our money, our vices, our hobbies; we turn our idols into cheap substitutes for our Redeemer.  Yet Christ made an unbreakable covenant with his people.  This was the God I rejected because I already had my ticket to heaven punched with all that I had done.  I created my own paradise in my mind where I was my own savior.  I lived in a world where I had broken all of the Commandments before breakfast, but in my eyes, I was a good person.  I was delusional.

I was blinded by my relativism, and my veil of perceived goodness had to be pierced.  Not just pierced, but utterly shattered by a curse that left me with a lifetime of pain.  This was much more than hurt feelings, but enduring physical pain that will forever remind me of what I once was.  This curse was perhaps the greatest gift that God could have given me because it afforded me the opportunity for saving grace.

I can clearly see that I once lived in a world of make-believe.  I persisted in a fictitious realm where I usurped God’s authority and redefined the qualifications for entrance to heaven much like people redefine gender and marriage today.  I am still a bad man, but I am a bad man who has been redeemed by a good God.

CC image courtesy of waferboard on Flickr.

Could Be Raining

It’s been three weeks since I started my new job.  For the most part, I haven’t worked these past forty-five months because of my medical ailments.  We have spent this time paying off debt and it’s just about time to throw our debt snowball at my thousands of dollars in student debt.  It’s interesting that my education has been utterly worthless from a financial perspective.  Nevertheless, I still have the debt and my wife told me, “Suck it up, Princess.  We have to get gazelle intense and start killing cheetahs.”  You just gotta love Dave Ramsey and his analogies.

I’m fortunate in that I actually have a job that I value.  I get to serve our homeless everyday.  I believe that my volunteer work over the past four or five years have prepared me for this job.  Granted, I’m only a cook, but a delicious meal can bring some color to a bleak life. 

Am I still in pain?  Certainly.  If my nerve pain isn’t flared up, I’m dealing with the nightmare that is ankylosing spondylitis.  I get ready for work at four a.m. when I feel pretty decent.  When I finally get home from work, I’m in so much pain that I can’t pry myself from the couch.  Or the floor.  I have an appointment to see my rheumatologist next week, so maybe I’ll get to try a new medication as Humira helps greatly, but I’m still suffering.

I know that I have a blessed life despite my hardships.  When I am crushed by the pain I sometimes remember what Marty Feldman said to Gene Wilder as they were grave robbing in Young Frankenstein.  He said, “Could be worse.  Could be raining.”  

Health Consciousness and a Messy Life

It appears that life just seems to get busier and messier as time passes.  A few weeks ago, my rheumatologist sent me to physical therapy to strengthen my back and to improve my overall posture.  When I was stricken with unbelieveable nerve pain five and one half years ago, I only left the bed when absolutely necessary.  Those necessities also included work that I struggled through while I was jazzed up on Oxycontin and Percocets.  That would barely take the edge off.  At one point I was on methadone.  That had no effect on my pain whatsoever.

My regular doctor drew blood for some tests and she sneaked a cholesterol test in there.  My levels were nearing 400.  Naturally, she said I had to lower my cholesterol or she was going to put me on yet another medication.  This conversation was about six weeks before Christmas and there was no way I was going to put the brakes on my epicurean diet until after the new year.  On January 19, I began monitoring my calorie intake and have been avoiding bad foods (namely donuts).  Since then, I have lost nearly ten pounds and I’m sure my cholesterol levels have improved.  I’m eating around 2000-2200 calories/day, but given my previous diet, I’m guessing that my normal calorie intake was 3500-4000/day.  Five cokes a day, donuts galore, and gravy feasts have been unkind to my waistline, and apparently, my heart.  I now weigh 201.6 pounds and am working to get it down to around 185.  Oh, and the wife wanted me to go gluten free a couple of months to see if it reduces my chronic inflammation due to my ankylosing spondylitis.

Now for the messy (at least for my parents).  A couple of years ago I had to remove my meth addicted sister from my family’s life.  Sometimes it is hard on the kids, but I was never close.  My parents are trying to get her into rehab but she refuses and speaks gibberish.  One thing she often repeats is that she cannot go to rehab because “they” would kill her.  Now, this has come to include my parents.  This delusion may have some merit because some big dude came up to my dad and told him to leave town.  Apparently, my sister has gotten herself entangled in some sex ring.  I know she always had problems with drugs, but I had no idea that she was this lost.  My dad came from Michigan to Arkansas for a few weeks to try to get my sister into rehab, and the most disturbing story I heard so far was that my dad was staying the night at my sister’s apartment when she and her boyfriend engaged in some manner of sexual deviancy in the kitchen.  Naturally, my dad had to find another place to stay.  I agree that was the best move because if that insanity is occuring in front of him, it is natural to assume that he was next.  To say the least, had he been raped, it would have ruined his trip.  I’m hoping that my parents will be able to stop that derailed train.

Somehow, in light of this nightmare, it seems that my constant pain is insignificant in comparison.