Tag Archives: autoimmune

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.

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.

Blackened Trout and Sauteed Kale with Ginger

In an effort to eat healthier, we have incorporated more fish into our diet.  Well, I have incorporated the fish and the rest of the family enjoys the benefits as well.  So far, I haven’t had a lot of resistance and Maddie, my five year old, actually comes home from school every day wanting to share a nice can of King Oscar Brisling Sardines.  As far as sardines go, they’re the best.  I’m actually really excited to have a kid to share this tradition with.  My dad used to kick back with a can and I’d hover around like a baby bird wanting to get my fill.

Eating better is nice, but it actually stems from trying to eliminate nightshade vegetables from my diet in an effort to reduce inflammation.  Autoimmune diseases are no pleasure cruises and it’s about time I try to monitor what I eat.

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I’m not really a fan of cruciferous foods, but that kale actually tasted…great.

Today was a bit challenging as I wanted blackened fish, but most blackening seasonings contain paprika and cayenne, two delicious nightshades.  I quickly looked up a nightshade free blackening seasoning recipe and decided I could make something taste halfway decent.  Granted, I only scanned the ingredients on Seaweed Girl’s Blog.  It was the first thing I saw on Google.  Though I’m not a ginger dynamo, the flavor is growing on me and today was a nice day to experiment.

If you want a zesty bed of kale, this worked out well.  I didn’t really follow the directions that closely.  Be sure to add about a half teaspoon of minced fresh ginger when you add the garlic.  Niiice.

I went with steelhead trout again.  I think it just has an amazing flavor.  I scraped the scales and coated the fillets with extra virgin olive oil.

Ingredients for Blackening Seasoning

1 1/2 teaspoon ground ginger

1 teaspoon onion powder

1 1/2 teaspoon garlic powder

1/4 teaspoon ground thyme

1 teaspoon black pepper

1/2 teaspoon mustard powder

1/4 teaspoon ground cumin

1/2 teaspoon dried oregano

1/2 teaspoon white pepper

3/4 teaspoon sea salt

1/4 teaspoon lemon peel (I found it on the spice aisle.  It’s granulated and worked nicely.)

1 teaspoon light brown sugar

1/4 teaspoon dried basil

Method

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This seasoning made a really nice crust.

Combine ingredients.  Simple.

Liberally rub seasoning into fish and allow to marinate 30 minutes.  I just left mine on the counter on butcher paper and continued prepping the rest of the meal.

Heat cast iron skillet.  It has to be hot to get the coating to crust.  Science happens right before your eyes as your food undergoes the magic that is the maillard reaction.

Place fillets flesh side down and make sure they make good contact with the skillet.  (If you have a lot of fish, you’ll need to work in batches.)  Allow to sear for three minutes.  You don’t want to fiddle with it and end up with a broken mess.

Turn fish over and allow to sear an additional two or three minutes.  It really depends on how thick your fillets are.

Remove from heat.  Enjoy.

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.

Feeling Alive

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CC image courtesy of Gunnar Grimnes on Flickr.

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.

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.