Tag Archives: Humira

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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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.

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.

It’s More of the Same, Only Different.

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Today has been a great blessing! Another day in Louisville, MS with Mercy Chefs, but a couple of volunteers showed up. How I love supervising! It’s still mentally taxing but I didn’t have to stoop or bend over. It’s the small things that I appreciate.

I’ve still been stiff all day and I had no idea how I was going to work all the way through. Ever since I climbed out of bed I’ve been walking like Boris Karloff. These trips are always physically taxing, and it’s only by the grace of God that I am able to do this.

If that wasn’t enough of a blessing, my wife called my rheumatologist and asked them to refill my Humira prescription because of last night’s debacle. I will be on my doorstep Tuesday, nine days sooner than I would have had my next scheduled injection. Heather definitely came through in a clutch on this one.

The first half of the day was rainy and the rest of the day was grey. It may not sound very pleasant as we spend much of our time prepping food under a tent outside, but my arms and neck are crimson. My neck feels scorchy, and I was glad to have had the clouds today. I also don’t want to completely obliterate my pasty good looks. Fortunately, this burn will tan and in about two weeks, all of this bronze will have flecked off.

When we are on deployment, every day is the same in that we get up early and cook, prep, and plan all day. We may have a menu planned only to scrap it two hours before the meal is to be served. The unpredictability of one of our days can be exhilarating. Some people get jazzed about NASCAR. I get jazzed about the excitement in our kitchen.

Finally, I only worked eleven hours today. I say that with all seriousness because this is a short day. I also had several breaks because we had volunteers. If I don’t have volunteers’ backs to break, my back does the breaking.

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Every day is the same, but every day is unpredictable. I know that may sound paradoxical, but it really is that way.

These trips are never about me or my incessant whining. It’s always about God and how I can serve others in His name. I just hope tomorrow is overcast.

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.

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.