Tag Archives: ankylosing-spondylitis

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.

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.

Ankylosing What?

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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).