Hello my name is Jim. I’m 52 years old, and live in Lansing Michigan. I relocated to southern Tennessee from Michigan for work when I was 23. The weather was warm, super-hot in the summers, not much of a winter to speak of. We had 2 maybe 3 months of cold, and spring came roaring back with summer right behind. So needless to say my body was in SYNC with the beautiful weather 9 months out of the year.
When I was 44 when I was told I had to relocate back to Michigan again for work. I first started noticing problems when I was about 42. I had some serious bouts of diverticulitis that lasted about 5 years. Initially I was able to control this with diet and exercise, but I lost the battle and had to have a partial colon re-section. Fortunately, I was able to bounce back from that, but shortly thereafter I started noticing the pain in my neck, back, and shoulders.
I didn’t give it much thought at first. As time went on my loved ones were beginning to comment about how my posture was beginning to get worse. They always asked if I was feeling alright, they noticed that I was walking funny like I had a stiff neck, of sore back. I kind of let it slide, and chalked it up to hard living when I was young, or maybe working out a little too hard. As time went on I made an effort to work on my posture. stand up straight, shoulders back. It worked for a while.
The first year I was back in Michigan I started noticing the dry skin. Not much at first. Elbows, knuckles, that sort of thing. Nothing a bunch of hand cream couldn’t fix. I battled this on and off again for about a year, and then one day it started clearing up Strange……….If you’ve ever been to Michigan in the winter time, dry skin is a way of life. Subzero weather for months on end. Blowing wind and cold. It’s just miserable in the winter in Michigan. So that’s what I thought it was from.
A few months later I started noticing my posture was getting worse, a lot worse. Also The dry skin was coming back. This time on my eyes, around my nose, over my forehead. The pain I self-medicated with Tylenol, ibuprofen, pain pills, whatever I could get my hands on. That worked for a while. The dry skin on my face turned into a problem I had to see a dermatologist. Steroid cream seemed to help but you’re not supposed to use it long term. So I use it when my face flares up and hope for the be
Move forward a few months I wake up one Saturday morning and I have severe pain in my right eye. Light sensitive, blinding and painful. I can’t even get out of bed from the pain. I call my son and he takes me to the hospital and the doctor didn’t know what it was. My eye didn’t look that bad to him, but he was not an eye doctor. He gives me some drops for the pain and refers me to an eye doctor and sends me packing. So I wait it out all the way through Tuesday.. very little improvement to my eye. I go in to see the eye doctor, she examines me and diagnosis me with iritis. I never heard of it, so I ask her what that is. She explains and in the next breath asks me if I have an auto immune disease. Of course I say no, I was actually appalled. When I heard Auto immune I thought of aids or something like that. She told me the symptoms I had were consistent with an auto immune disease and requested I get blood work done. Reluctantly I get the blood work done come back for a follow up. She informs me that I do have the markers in my blood for an auto immune disease and says I may have arthritis or something like that.
Now Arthritis is something I’m familiar with. My wife has a severe case of rheumatoid arthritis, and has been through the gamut with medication, physical therapy, etc.. I convince myself that the eye doctor doesn’t know what she’s talking about and make an appointment with my wife’s rheumatologist.
When I go in to see the rheumatologist she sends me for a complete series of x-rays and blood work. She does an exam and takes note of my posture, and asks about my pain any other illnesses I have. I return about a week later and she tells me I have AS Ankolysing Spondolitis. I’m a little floored by this as I never heard of it. She explains it to me, gives me tons of literature, puts me on Methotrexate and sends me on my way. When I go home I’m still not convinced. I put the methotrexate in my dresser drawer, and move on.
As time goes on I notice my neck and back is getting worse, a lot worse. I have to sleep sitting up because of the pain. I can’t turn my neck all the way. My back hurts all the time, my wife has to help me with my socks and shoelaces. . I start developing some breathing problems, and end up getting pneumonia several times. I’m still in denial. I chalk it up to the cold weather in Michigan and the fact that I’m getting older.
A few months later I end up getting an infection in my colon that puts me out of work for a month. After I heal up and get back to work I notice that my posture, neck pain and mobility is getting worse, much worse…I look at myself in the mirror, or when I’m passing a window and I see how I’m walking slumped over. I know that I don’t have much range when it comes to turning my neck, people are always asking me if I’ve been in a car accident or was injured. They notice how I’m walking, how I can’t move my neck, and so on. Now I’m starting to get a little worried. The realization is beginning to slowly set in. I begin to read a little about this AS. What is it? What does it do? Can I get treatment? Can I get surgery or take a pill to make it go away?
I forget about it again…for a while.. I go to get my hair cut one day and the hair dresser asks me if I had banged my head on something. I’m confused and she says I have what appear to be abrasions on my scalp. I feel the burning and raw spots, but I never bothered to look that close. I go home and my wife takes a look and says it looks like a rash or irritation of some kind. I start thinking about it and I realize that maybe the skin problems I had are moving to my scalp.
Things are beginning to pile up.. Things are beginning to come together for me.. Things are beginning to show a pattern. And patterns I know about because I do statistics for a living. What I’m beginning to figure out is that I’m having flare-ups. Things go smooth for a while, then I have a flare-up and all hell breaks loose. I start to take things a little more seriously now.
I start reading anything I can get my hands on about this AS. I visit just about every site I can on the internet. I read about other people’s experiences, treatments, flare-ups and it all starts to make sense. The skin problems, the GI problems, the neck and back pain, the poor posture, the eye problems, sleeping sitting up, chronic fatigue etc… Now I’m almost convinced that I may have it.
Then a few weeks later I get up early on a Saturday morning and there this rock and roll show on the TV. The guy being interviewed is from a band I’ve been following since I was a kid.. Motley Crew. His name was Mick Mars. The strange thing was as I was watching this show and looking at this guy I noticed that he was moving just like me. Wow that was weird. He couldn’t turn his neck, it was obvious he was very uncomfortable. The more I watched I could tell that he was in a full blown flare-up. The icing on the cake was they turned the interview to his health issues, and he starts talking about AS, the cause, the fact that there is no cure. He uses words like bamboo spine, he talks about his prognosis, and his plans to keep on touring until he can’t walk anymore.
This has all the bells ringing for me, the alarms are going off like crazy. Here’s a guy I’ve been watching for 20+ years and he’s got what I got. He’s not in denial, he’s not ashamed, he’s not scared. He’s even talking about it on national television. This motivates me to start reading again. That’s when I start reading, really reading and taking everything to heart. Now I’m thinking about treatment, physical therapy, and a better quality of life. I want to try the biologics but I’m scare of getting cancer or some other side effect they have all over the TV when they advertise humera or enebral.
I’m on the right track now and I’m hoping I can beat this thing or at least slow it down. My next stop is the rheumatologist to talk about medication and physical therapy. In the meantime I’ll be thinking about the guy on TV, and all of the other faces on your website. The people all over the world that share in this misery. I pray for a cure, I pray for help for each and every one of us. I’ll keep moving forward, and I know with perseverance we can all win this battle.
More to come…….