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.
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.
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 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.
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.
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.
I saw the rheumatologist for the first time last week. It was refreshing to see someone who seemed to know what was going on. My general practitioner is great but I’m glad she referred me instead of just treating the symptoms.
I don’t have a diagnosis, yet, but the new guy ruled out lupus and rheumatoid arthritis. I told him I can’t afford an MRI, so he is taking a “Dave Ramsey approved” course of action.
The doctor asked me a bunch of family history questions. I told him about my dad. He’s 70 and he claims he can still run like a deer. The doctor laughed and said I’m better off than running around like an effeminate deer. I had never considered it, but deer are kind of effeminate.
I had a few x-rays taken and a few vials of blood drained from me. He sent the blood to the lab and I’m going to start some super-expensive medicine that should be deeply discounted with one of those prescription cards issued by the drug company.
As long as my end is under a hundred bucks I’ll manage. The doctor said this medicine costs about $3000 a month. Before he told me my out of pocket cost would be reasonable, I considered leaving. Who needs a diagnosis if you can’t afford the treatment?
Using medicine as a diagnostic tool reminds me of House M.D., but my physician isn’t giving me hepatitis to treat me. I’m glad.
The doctor says it is possible my issue is mechanical, but if the medicine works, the two ailments that fit my symptoms are psoriatic arthritis or ankylosing spondylitis. The symptoms fit the latter disease better.
I can’t even pronounce it. I just know I’m in pain. I may be near an actual diagnosis, and at this point, I hope it is one of these disorders. It means there is a treatment.
(CC image courtesy of Anagoria on Wikimedia Commons).
The medical industry is a racket. Tomorrow will be my first appointment with a rheumatologist. I have various joint symptoms, and after seeing my regular doctor and an orthopedist, this is the next step.
We have private insurance because my wife works for a small company and I have been unable to work full time for three years because of my ailments. Our best guess is that I have an autoimmune disorder that was triggered by trauma stemming from a vasectomy. (In simple terms, the doctor forgot to inject the lidocaine). I have had numerous procedures and have been dealing with nerve damage in this delicate area only to have increasing pain in my knees and ankles.
I’m displeased because I just received a phone call from the doctor’s office informing me to bring $500. I read was a requirement for those without insurance. The day I filled out the forms, I told my wife, “Yay us! We have insurance!”
Private insurance. $6600 deductible. All so we could have insurance for under $700 a month. Insurance that is pretty much useless unless one of us gets into a car accident and loses a face while growing a tumor farm on their back. And athlete’s foot. It’s the athlete’s foot combined with everything else that helps meet the deductible.
This insurance nightmare is still pre-Obamacare. By January, we should be feeling the rainbows and unicorns from the Affordable Care Act bearing down on us. I’ll be surprised if we don’t end up paying $1000 a month for less coverage.
I’m sorry. Did I say coverage? Paying for everything out of pocket doesn’t sound like an equitable proposition. On top of that, let’s pay the equivalent of a small house note each month so we can carry around a worthless insurance card.
I can see why some people might be driven to rob banks. Maybe I should bring a cap gun to my appointment and demand a free consultation.
(Above CC image courtesy of 401(K) 2012 on Flickr).
As my body gives me more ‘old guy’ reminders with fresh and interesting new body aches, I realize I’m fast becoming an old man. At thirty-eight, I’m struggling with my memory. It’s not just memory. My concentration has gotten so poor I sometimes have a hard time carrying a two minute conversation.
If it wasn’t for the family history of Alzheimer’s, this would be funny. I’m not even trying to imply that I have Alzheimer’s, but did I mention that I can’t give blood?
It’s nothing glamorous like I used to be an IV drug user or I’m moonlighting as a vampire. From 1989-1992, I lived in Germany. The blood collectors don’t want donations that could potentially be tainted with Mad Cow Disease. Nice. Now my over active imagination gets to picture my prions crapping out.
No, I don’t seriously think I have prion disease. I just can’t remember things. It’s even hard to remember childhood moments.
My wife would not normally be concerned, but I used to have a steel trap memory. Nothing seemed to escape it. I had memories when I was two, I used to learn while sleeping, which irritated some of my college professors. My wife could not comprehend how I could be snoring while she was watching tv, only to awake to have a discussion about what she watched.
My wife keeps my appointments. She texts me reminders. I have taken notes to remember errands only to forget I had taken notes or where they might be. Instead of remembering every simple detail, I’ll perform tasks only to forget I ever did them.
My wife is concerned with my ‘condition.’ I actually find it peaceful to be oblivious. I don’t have to worry about as much as the average person because I forgot that I even had something to worry about. It’s certainly not a profound condition, at least not yet, but at least this does have some perks.
Now if I can just find my car keys.
My adventure began about four and a half years ago. My wife and I just had our third daughter three months prior, and we decided that it was time for a vasectomy.
When I was around ten years old, I was diagnosed with a varicocele. I had it repaired when I was seventeen and gave it little thought until I told the urologist about my history when I was 34. The good doctor advised me that there should be no issue when I had the procedure.
Sparing the details, I knew there was something wrong when I still had searing pain three days later. I was supposed to be well enough for life by now. The urologist thought I was malingering, so it was time for a new urologist.
This new doctor was tasked with undoing whatever harm may have been done by the previous doctor. His best advice was to get an epididyectomy. I was in so much pain, I underwent this procedure with little thought. Recovery was elusive as I spent weeks in bed loaded on narcotics.
I was in bed a couple of months when we determined I may be stuck with the sensation that I caught a golf club with my groin. Naturally, it was time for pain management specialists to figure out how to cure me or to feed me enough OxyContin that I could eat them like skittles. The obvious choice for the specialist was to feed me a drug cocktail that would practically induce coma for the average person, but it barely took the edge off.
During this time I also made several trips to Lubbock, TX to receive experimental RF (radio frequency) treatments to burn my ilioinguinal nerve. The very first treatment was promising. The team of doctors said that if the treatment was successful, I could expect to be pain free up to six months before I would need another treatment.
I was wheeled away to the operating room and was stabbed in my lower abdomen with a long needle that felt like a railroad spike. Once the needle was in contact with the angry nerve, it was time to burn it with RF pulses. This procedure was agonizing, but in recovery I could see that it worked! I was pain free and it was time to celebrate. About an hour later though, I could feel the pain creeping back in. I underwent three or four more of these hopeless procedures over the next few months and during this time I was either missing work or laying in bed every moment outside of work.
My pastor knew what I was dealing with and advised me to go to a specialist in Temple, TX. This new urologist has treated people with similar problems and said an orchiectomy is the best course of action. He also said he would sever the ilioinguinal nerve while he was operating. He was certain I would not feel anything when I woke up from surgery. I awoke with severe pain, but it was still considerably better than usual.
By this time I was unable to work and spent my days resting and praying. Over the course of about a year I could feel that my condition had improved and my daily life is now bearable.
I still have pain everyday. It gets worse with physical activity and a flare up can last several days. I also have other chronic pain issues that probably stem from this trauma. I have an appointment with a rheumatologist next month to explore my new conditions. What’s important is that I have some semblance of life again. I know my relationships suffer and I’ll probably never have a normal full time job again, but I’m no longer chained to the bed or opiates.
My advice for all men: Never, never get a vasectomy.