My journey started in 2000, when I first started showing signs of Psoriasis, It started appearing on my scalp. I knew what it was, because a few years earlier, my younger brother had it on and around his finger nails. It remained just on my scalp, but none the less drove me nuts. That is where I got my neck name MajorFlake, it was constantly there, with no releaf in sight.
In 2007, I was standing on slick very polished wooden stairs talking to a co-worker. When my left foot slipped off a stair and landed on the next step down. I didn't fall at all, however, I felt this electric shock shoot through my entire body. I didn't feel any other pain at all. So I didn't go to the Dr. About a week later, my neck, shoulders and feet started to hurt. So after about a month, I finally went to my Dr. She took an x-ray of my neck and asked me what happened to my neck. I told her about the stair well. And she told me, no, that isn't what damaged my neck. I said, yes, that is what happened. She told me, no, because the injury was much older, like 20 years or more older. I was shocked and asked her how did she come up with that? She said that she could tell by the bone spur growth. Then she insisted that I tell her what happened.
I then told her about the abuse my father gave me growing up. How he use to pick me up by my shirt collar and the seat of my pants and ram my head against the wall. She told me that she had no doubt that is what caused my neck injury. I asked her about my feet and why they hurt so much. That was the start of almost 5 years of going to my Dr. and her earnestly trying to figure out what was going wrong. Everything from: maybe it is a virus, lets wait and see if it will go away (blood tests showed nothing), to gout, to platar's factitous at the podiatrist. He told me that I had plantar's factitious and that he noticed I was limping when I walked in and that I should stop limping (hmm, I was limping just the heck of it?). Needless to say, that really pissed me off.
After that visit, I decided that I had to find out what was wrong with my feet. It had been almost 5 years with still no answers. I decided that I was going to have to go this alone and figure it out. So I started looking at different things that effected my feet. At this point in time, I thought that I knew what was causing the pain in my neck and shoulders. By this time, my toes were starting to get swollen and about a year before, I had a foot operation on the tendons in my left foot because it was so swollen, I couldn't wear shoes. That operation did take the swelling down in my left foot. But none the less a year later it still hurt and my right foot and toes in both feet were swelling up all the time.
I finally decided to look at different types of arthritis. About this time I was starting to get swollen fingers in both hands. After looking at the different types of arthritis, stumbled across Spondilitis. I remember when I first read it, thinking, dang, that can't be what I have, that really sucks. Then more I read, the more I was pulled in by everything lining up. I didn't know how to feel or how to confirm or dismiss this. So, I decided to see if there was a support group. I found one for autoimmune diseases and decide to show up at a meeting. I didn't know how to feel, I was afraid of looking like a complete idiot showing up to these complete strangers, spilling my guts out to them about my last 5 years and then they telling me "you don't have that".
I decided to attend the meeting against my fear. When I showed up, there were 4 women, only women. They meet at a Starbucks. I though, oh gawd, what am I doing here, this is for women. I introduced myself and told them that I wasn't sure if I should be here. They asked me to tell them what I'm experiencing. I told them the last 5 years of my life. When I finished, they told me that unfortunately I was probably correct in guessing Spondilitis and that I need to see a Rheumatologist. They also told me about this cool little ride that I was about to ride on for the rest of my life. They called it "the medi-go-round". They also told me that my life has now changed for the rest of my life.
After that, I immediately went home and e-mailed my Dr. links to Spondylitis and PsA and told her that I needed to see a Rheumatologist. I also told her about my meeting with the support group and what they told me. Her response was that it might be a good idea to see a Rheumatologist. About a month later I finally was in the Rheumy's office. She ready everything that I had e-mailed my Dr. She then examined me from head to toe and had an xray taken of my neck and pretty much the rest of my body too.
The next visit about a week later, she pulled up the xray from 2007 and the one from the week before (Nov. 2011) and showed me what had happend to my neck in that time frame. In 2007, there was a bone spur in c2-c4, now my whole neck was fused from there down to between my shoulder blades. She immediately started the process of preparing me to go on Enbrel. She told me that it is very severe and that my only hope of not being wheelchair bound was the biologics. Then she tells me to wait for the nurse. The nurse comes in and tells me that she was assigned to me. I thought ok, so you will be taking care of me for this office visit. She must have read my face,because she said: "I don't think you quite understand. I am your nurse, I am responsible for you. You have to tell me anytime you get a cold, sniffle or scatchy throat. You have to communicate everything of concern no matter how trevial it seams, I have to know about it" I about had an accident in my pants when I heard this. This all was coming at me at the speed of a freight train and there was no stopping it. I finally realized what they told me at the support group about my life changing forever.
Sorry for the novel, but that is my story. I hope that I didn't spill my guts too much to you all. If I did, I sorry about that.
Joel