A.S. Face 0686: Joel Johnson

My name is Joel and I have attempted to write the twice before, because it is a hard story for me to tell. I really don’t know where to start, so I will just start from the beginning. My parents told me that I was born premature a month and a half early. When I was 18 months old I had a temperature of 102-107 degrees from what my parents told me was an accident from a baby sitter playing with me and bumping my head on the ground. They believe because of that, I wasn’t able to start crawling until I was 3 years old and I started walking with braces when I was 5 years old. I eventually was able to walk normally. I am also blind in my right eye and am partially sighted in my left eye because Dr’s damaged part of my corneas while removing fluid from my eyes due to premature birth. I went to special ed (the short school bus) until my 5th grade, when I told them I wanted to go to regular school. Everything was fine until 1988, when my left eye started seeing blurry.  I went to several eye Dr’s. and was finally sent to Jules Stein Eye Institute at UCLA. After several visits, one of which, my Dr. calling me and asking me to do a special visit. At this visit, there were Ophthalmologist from the east coast at the Institute for a meeting. They placed me in the center of the room and they literally formed a line and took turns looking at my left eye. None of them could figure it out. And on my last visit they sent me home with a note to my employer (which I could not read) that stated: we currently don’t know what is wrong with my eye, but they are quite sure it will be better in 6 to 8 weeks. Because I was already blind in my right eye and now this affecting my left eye, I was now essentially blind. Not knowing what to do, I decided to go back to my parents, they lived in Oklahoma at the time. My parents weren’t willing to help me, they were mad at me for not asking my Aunt in California to help and the told me that I should just get a job. This and the physical abuse that I was raised with, was all that I could take. So while they were on a trip, I packed my stuff and went back to California with $70 to my name. That was the last time I have spoken to or seen my parents. Finally, in 1992, my vision was better, back to where it was before.

Then in 2007, I was talking to a co-worker on a flight of stairs, when my left foot slipped off of a stair and landed on the next stair down. I didn’t fall, but I felt this very powerful electric shock shoot through my entire body. It was as if I had put my hand in a light socket. I felt nothing else and was fine for a few weeks. But then my neck started to hurt, so after a few weeks, I went to my Dr. She had x-rays done and when she looked them over, she asked me how I injured my neck. I told her about the stairs, but she told me, that wasn’t what the injury was from, that my injury was like 20 years old. I asked her if it was from being dropped as a baby, and she said probably not. Then I told her about how my dad use to pick me up by the seat of my pants and shirt collar and ram my head against the wall. She told me that was more consistent with my neck injury. She also told me that I shouldn’t put much salt into the baby sitter story that my parents told me. Six months later, with my neck still hurting, my feet start hurting and progressively get worse. I got back to the Dr. and she tells me that I might have a virus and to wait for a while to see if it goes away. We wait for 6 months, still hurting, finally after a year she agrees that it isn’t a virus. Then she and another Dr think it could be gout, they run the blood tests for that, nothing. This stuff goes on for 4 years, my feet in extreme pain and my neck and shoulders hurting. Finally I go to a Podiatrist, he tells me that I have plantar fasciitis and to stop limping. This really pissed me off, what, was I limping because I felt like it for 4 years? At that point I decided, I wasn’t getting any help from the Dr’s. so I had to figure this out for myself. I had no idea what I was looking for, but after a month I ran across Psoriatic Arthritis(PsA). I looked at the sight because I had Psoriasis in my scalp, I never would have thought that having an inchy scalp would have anything to do with my neck, feet and now at this point I was starting to have arthritis in my hands as well. I couldn’t believe what I was reading, I thought, I don’t have that, because it is too awe full to have.  When I searched for auto-immune diseases to read more, I found a support group. I decided to go, thinking it was a stupid idea. When I showed up, I was the only guy and thought I was in the wrong place. I almost didn’t stay, they asked me what I had, I told them that I didn’t know and told them the last 4 years of my life. I also told them about PsA and the 5 types of PsA, one of the types being AS. I told them that it was driving me nuts, not knowing what was wrong. Most the ladies there had Lupus, but they told me that I had similar symptoms as theirs and told me to see a Rheumatologist. I had no idea what a Rheumatologist was, what Lupus was and what this new ride that they introduced me to “the medi-go-round” was.

I e-mailed my Dr. everything I found, told her about the group and that they told me to see a Rheumy. My Dr. agreed. I had to wait 2 months for an appointment (longest two months of my life). At this point I can barely walk, my hands are swollen, my neck and shoulders hurt. The first visit, she examines me from head to toe and orders x-rays of most of my body and tells me to come back in two weeks (that was the longest two weeks of my life). When I return, she tells me that my self diagnoses was correct. I have Psoriasis, Psoriatic Arthritis and Ankylosing Spondylitis. She told me that I not only had AS, but that my AS was very aggressive. She showed me the x-ray from 2007 and the current x-ray (Nov. 2011) of my neck. In those four years, the AS had fused from C2 (the top of my neck where my injury was) down to between my shoulder blades. She told me that if I don’t start treatment soon, then I would end up in a wheel chair. It really didn’t sink in until the nurse came in and told me that she was assigned to me. And while she was talking to me, she realized that I “didn’t get it”. She stopped and started over and said: “I don’t think you understand what I’m saying to you. When I say I’m assigned to, I mean that you have to call me every time you have a sniffle, cough or don’t feel good, here is my card”. That is when I realized the feeling of “being ran over by a mac truck several times” was real. After a few road blocks (shingles and a sinus infection) she was able to get me on Enbrel. I still have feet and neck pain, but I am doing better then I was doing. I can now walk for a few minutes before my feet hurt. So I use a knee scooter to keep the weight off my feet to stay upright. The knee scooter helps a lot. I highly recommend one.

The physical pain is sometimes hard, but for me, I think the hardest part is the mental part. I have know idea how long Enbrel will work. Will I end up in a wheelchair? Would I have gotten AS if I wasn’t abused? So many questions and no real answers.

I Am The Face Of Ankylosing Spondylitis Joel Johnson, Seattle, WA. 50yo.


Washington United States of America

5 Responses to “A.S. Face 0686: Joel Johnson”

  1. Joel,

    You have an incredible story like many others here. You have come to the right place for support and if nothing else a place to vent. This is the most caring, compassionate group of people that i have ever met and we are all here to support you because we all get it. You are obviously a strong person to go through what you have and still continue to fight and that says a lot about your character.

    I am in the middle of a three week flair up and feeling down myself which is why I came to the site. I always find peace and inspiration here. Hang in there and keep fighting. I will keep you in my thoughts and prayers!

    #627 Jim Williams

  2. Dear Joel,
    Thank you so much for sharing your story with us.
    Sincerely Cookie

  3. Hi Jim,
    thank you for your kind words. The stories that I have read so far help me to realize that I not doing this alone. I hope the flare up goes away soon. Is it just me? Or do others think like me. When I’m not having flare ups, aside from my neck pain, I think that I’m a normal person, that all is well. But then when I have a flare up it reminds me that I am sick inside.

    #686 Joel Johnson

  4. Wow. Joel, As I read the FACES stories, I am more and more impressed with the tenacity and perceverance of the human spirit…and you are “thee” perfect example. Screw Readers Digest…I see “everyday hero’s” on FACES everyday. I read FACES, or I should say “feed” on FACES, because it so builds up my spirit, most of all it builds up my “respect” for the human spirit. Out of so much grief…I see so much light. To go through so much and then write such an articulate story. I hope it was a great relief and a great release to tell your story, as it was for so many of us.

    Now, Why would Enbrel stop working? It’s been working for me for 6 years. I think your fears are unfounded so put them aside.
    Have you thought about a “insert” for your feet. One of the “mysterious” ailments I had ten years ago was foot pain…and a plastic “orthotic” really releived it?(I think I would find a different podiatrist then the one above!)

    Thanks for being my hero for today Joel…I think it’s time we all had peace of mind.
    (Oh crap, I’m sittin here in the dark with all the lights off…and I just heard a “trick or treater” knock on my door…I hope they like some “saltine crackers” cause that’s all I got!!-JUST kidding!)

  5. You are awesome … we all will be your family and we won’t hurt you…you are a true inspiration! JoDeane

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