Public Service Announcement for All Bojons!!!! Please Read!!!

First, and somewhat importantly, there is still no “Eiler’s Neighborhood”.  That fictitious place is only known in the mind of writers of the Pueblo Chieftain.  Meanwhile, Bojon Town is alive and well and still in the same location.

 

OK, now on to a very serious subject.  Everyone that is a Bojon, has a relative that is a Bojon, or knows a Bojon needs to read this.  I think it’s so important that you read this that if 5 people reply to it, I’ll post a funny story about growing up in a neighborhood with 6 or 7 bars.  I’ve been wanting to finish that story for a while, so this is incentive for all of us.  Now, what I’m going to ask you to read is not funny, not entertaining in any way, and in fact is really kind of ugly.  It’s going to sound like it’s about me, but the point will be revealed in the end.  You HAVE TO READ IT ALL.  It’s important.  It’s designed to get a reaction and make a very important point.  The reaction isn’t to get you to feel sorry for me.  But please, read until the end and you will understand.  Hopefully it will help someone that reads it.

 

I have ankylosing spondylitis.  It’s a rather rare condition that not too many people have heard of.  Here is the Wikipedia summary.

“Ankylosing spondylitisis a chronic inflammatory disease of the axial skeleton with variable involvement of peripheral joints and nonarticular structures. AS is a form of spondyloarthritis, a chronic, inflammatory arthritis where immune mechanisms are thought to have a key role.  It mainly affects joints in the spine and the sacroiliac joint in the pelvis, and can cause eventual fusion of the spine.”

Here’s the short summary.  My body tries to fuse all of my joints.  It treats them like broken bones.  If I don’t use them, they fuse together.  Not in a neat way, but in an ugly, jagged way.  Often, after a joint fuses, it breaks loose.  Then it’s even uglier and more jagged and now it has to kind of grind itself down and then re-fuse all over again.  I had an x-ray done in the late 1980’s and Dr. Hamill, who got me through this in a lot of ways, showed it to me.  We counted 29 places in my neck and upper back that were fused and fractured.  I fractured my wrist in 2002.  They put 2 clamps with 4 screws into my arm and hand bones.  The doctor took an x-ray a week later to see how it looked, and he couldn’t believe it.  He said it was completely healed, but he wanted to leave the screws in for 3 more weeks to make sure.  Mistake.  The screws fused to my bones.  He told me it would take 5 minutes to get them out.  After an hour and a half, he had to get a cheater bar for his little tool, and he finally cracked them loose.  Hell, I would have rather had the broken wrist.

Now, added to those bone issues, which you can imagine can be a bit painful, I have constant muscle spasms.  Good ones.  I have them in my upper shoulders and neck, and my neck is fused at a very odd angle.  The muscle spasms pull my neck forward and cause my airway to almost completely close.  If the spasm lasts for more than 3 or 4 minutes, I pass out.  Usually when I wake up, it takes hours to feel normal, and I usually need a shower and change of underwear.  Now I’m having breathing issues due to the fusions causing muscle problems in my chest.   Bottom line, I can’t get a deep breath.  I just can’t flex my chest enough.  My tendons are starting to harden where they connect to the bones.  My tendons on the bottom of my feet are pulling away from the bone.  I need a cane to walk when it gets bad, and now my hands aren’t strong enough to hold one confidently.  I also have balance issues, so I fall now and then.  Not good.

I don’t sleep.  If I lay down, I turn from side to side every 10 minutes.  At best, I pass out for 2 hour periods before I need to get up and stretch and move.  I am constantly fatigued, from both the lack of sleep and the constant pain.  I’ve taken every drug available, to the point that I had to take a drug for the bleeding ulcer that the other drugs caused.  I’ve tried everything.  It’s just getting worse.  There’s more.  It’s all very depressing.

I’m 57, and I started getting symptoms when I was 17 or 18.

OK, now this is where it starts to sound less like me whining.  Here is where it starts to get important.  The above was just to get your attention.  Now, I said I started to get symptoms when I was 17 or 18.  I was hospitalized for it when I was 20.  But I wasn’t CORRECTLY DIAGNOSED until I was 26.  Did you get that?  I started showing symptoms when I was 18, and it took them 8 years to figure out what I had.  Now, if it is diagnosed soon after the onset of symptoms, it is very manageable.  The longer it takes to start the proper treatment, the more the joints deteriorate and the worse the outcome.  So, early diagnosis is critical to the future of the patient.

I’ve done a lot of research on the subject, because my life kind of depends on it.  I found some very interesting things.  The root cause is believed to be a bacteria in the person’s blood.  It is inherited and often skips generations.  It strikes males much more often, and when females do get it, their symptoms are usually much less severe.  It starts to show symptoms between the ages of 15 and 21, and it is detected with a simple blood test.

Now, here is where it gets interesting for me, and for you, I hope.  A lot of the recent research is being done in Serbia and Croatia.  I thought that was rather curious, so I looked into some of that research.  The reason that the research is being done there is that’s where the highest prevalence of the disease is!  It’s a disease that seems to target northern Europeans, specifically young Bojons!  I’m not lying!  I know 5 people that have it personally.  All are at least part Bojon.  The statistics are there.

I hope you made it this far.  Here’s the really important part.  The disease hits young kids in their teens.  The complaints usually get passed off for something like ‘growing pains’, or ‘muscle strain’.  I was told I had growing pains, a lumbar sprain, a herniated disk and a few other things before someone figured it out.  It took 8 years.  The shocking part is that it often takes longer to get the diagnosis correct!  So, here’s what you need to think about.  Bojons seem to have a higher chance of contracting ankylosing spondylitis.  Males are hit more often and harder.  If it’s diagnosed early, a lot of what you read above can be avoided.  So, if you are a young Bojon male, if you are related to a young Bojon male, or you know a young Bojon male, keep this in mind if you ever find yourself telling him that his sore back is just growing pains.  It’s a blood test that parents should ask the doctor to do on their kids, in my opinion.   A lot has changed since the 1970’s when I was showing symptoms.  It wasn’t that widely known about.  Now, all you have to do is ask for the test.  It’s a cheap price to pay if you catch it early.  Thanks.  Now back to the story about the bars!

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16 responses to this post.

  1. Posted by Marie Barnett on April 7, 2014 at 7:52 pm

    I’m so sorry for all your suffering and I applaud you for taking the time to tell your story and educate people on the subject. My doctor mentioned the Slavic tie to me a long time ago. Couple of other symptoms I have personally suffered from are iritis (eye infection not pink eye!) and my arms are always purple looking but not bruised.

    A simple blood test is all it takes for proper diagnosis.

    Love you brother!

    Reply

    • Now that you’ve outed yourself, this is one of the 5 Bojons I know that have this crap. Me and my little sis! Our luck! We hit the genetic lottery, but can’t hit the Colorado Lottery. I never had any eye problems, other than being blind as a bat. My skin color is getting pretty weird too, the last few years. I chalked it up to some kind of mutating from living in Cripple Creek! I love you too!

      Reply

  2. Posted by Mike Barnett on April 7, 2014 at 8:56 pm

    I’m sure I have it too. Always have back pain that the chiropractor cant fix. Thanks again for the bad gene but hey at least we know your my dad and its not the milk man.

    Reply

    • I wrote this because I missed it with you. I never had you checked, and it’s one of my biggest regrets. I can’t fix that one, but you still need to go and get checked. There are still things that they can do now. It’s not too late. Please!

      Reply

      • Posted by Marie on April 8, 2014 at 7:18 am

        Mike Junior I definitely agree with your father and stay away from chiropractors. They will Hurt you more than help you especially in the long run.

    • And definitely stay away from chiropractors. Your aunt got that one right on the nose. I made that mistake. I went in like a religion for my weekly back breaking. And that’s literally what it was. The vertebrae would fuse, and the chiropractor would break (adjust) them for me weekly. It seemed to help at the time, but I can’t imagine the damage I took from that.

      Reply

  3. I am so sorry for your suffering Uncle Mike and Auntie Marie. I will keep both of you in my prayers.
    Thank you for sharing this and educating us Uncle Mike. I will definitely keep this in mind when my children get older.
    I miss you and I hope we get to see you when we come to Colorado for Easter! I love you!

    Reply

  4. I am so sorry for your suffering Uncle Mike and Auntie Marie. I will keep both of you in my prayers!

    Thank you for sharing this and educating us Uncle Mike. I will definitely keep this in mind when my children get older!

    I miss you and I hope we get to see you when we come to Colorado for Easter! I love you!

    Reply

    • Don’t feel bad, Sarah. It’s just life. Definitely remember this when your little ones turn 14 or 15 though. We’re living in Pueblo now, so we’ll definitely see you at Easter!

      Reply

  5. Posted by audrey_b37@yahoo.com on April 8, 2014 at 8:10 am

    It seems like our family  attracts rare and nasty health problems.  Keep an eye on Dylan and Shane.  Marie may also have the same problem.  Hope she reads your post .  Sorry, Mike.  Love you

    Reply

    • Hey, if you can’t hit a longshot now and then, life isn’t worth living. Now a longshot like the lottery would be nicer, but we play the cards that we get dealt. Marie definitely has it, and she has a lot of the symptoms that I was lucky enough to avoid. We need to keep an eye on all of the grandkids. I’m going to have Jenn and Jason and Shane have all of the kids checked when they turn 16. It’s just too big a risk not to check into. I love you mom. Thanks for everything!

      Reply

  6. Yay! I am excited we will get to see you! I wonder if maybe this is something we should all just get tested for. It couldn’t hurt to know either way!

    Reply

  7. Posted by Tami on April 9, 2014 at 6:58 pm

    Not sure if I am one of your five, but I tested positive for AS when I was 17 or 18. Had much back and hip pain at that time so they tested. It can cause lots of issues….
    As for our family if 1 percent of the population can get a Heath issue we will.
    So sorry that your symptoms sound really bad Mike, it can be so horrible to have pain.

    Reply

    • You were on my list. I think about you a lot because of it! Amazingly, it seems to hit men more than women, but 2 out of 5 that I know were you and my sister. You are definitely right about us hitting the lottery when it comes to crap health. I just try to suck it up, and when it gets really bad, I think of Grandma Bear, crutch under one shoulder, half of her pieces missing, hoeing weeds in her garden. I try to live up to that example, but unfortunately I fail a lot.

      Reply

      • Posted by Tami on April 10, 2014 at 10:32 am

        Grandma is my superman thought on bad days. That and good makeup and hair so I can hide the fact that I want a whambulance… That woman moved her fridge on a krutch. Today is one of those days, fear a new foot fracture, mom suggested that was the issue last night, reminding me this is how the last one was. Bummer but I still pretend I am fine. I hope our future generations get skipped.

        Love you…maybe it was the 50 times on Mr twister in that back car that did us in 🙂

  8. If I close my eyes and concentrate, I can still feel that day! I remember laying on the floor that night, trying to make it stop, The intelligent things we do when we’re young. Now I look at those rides and the first thought that comes to my mind is “do I really want to chance paralysis for this” 🙂

    Reply

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