The Faces Of Ankylosing Spondylitis

My Story – Ankylosing Spondylitis

I am 35 years old. I have had Ankylosing Spondylitis since I was 18 years old but didn’t get diagnosed with AS until I was 28 years old.

It was just after high school when I started working 12-14 hour days on a Hog Farm. During the first year, I experienced pain and stiffness in my Hips and Lower back and even sciatic nerve. I didn’t know that I even had a disease, so I put up with the pain as though as it had came from working so hard. I remember I didn’t want to do anything but go to bed when I had returned home from work. A year and a half had past and I couldn’t live that life anymore so I went to work for a Welding company. I was kind of made fun of alot because I couldn’t even lift a 50 pound bag of floor dry, but in turn, was respected for doing my job and using my head in figuring out how to move heavy objects after welding them together. I still had a great work ethic and I used my head to get the job done as best as I could.

For the next 10 years, I worked in factories in my town and finally the last placed I worked, I sprained my back and they let me go from that job. During that time, I had went to go see a Physical therapist for my back sprain. The thing about it was that the therapist that worked on me, asked another therapist if he thought I had Ankylosing Spondylitis. He diagnosed me, but didn’t record it. By this time, I was pretty tired of life. But, with the physical therapy and a new drug called VIOXX, I felt renewed! I felt so good when I left the hospital, I started crying. I have worked for 10 years downing Advils 4 or 5 times a day. For the next few years, I went to college and took it easy. I had to make money so I worked as a pizza delivery guy and owned my own Detailing business for a couple of years. Then, the terrible news broke, “VIOXX will be taken off the market due to health issues”. I was stunned, Vioxx was my miracle drug! I couldn’t believe it! So after I had been taken off Vioxx, I started going down hill. I lost weight, had pain all over my body, could barely walk but still delivering pizzas to survive. I finally had enough. It was to the point where I couldn’t do my job. I couldn’t walk up staircases and carrying bags of food and stacks of pizzas was getting harder and harder to do. I finally came to terms that something was wrong with me. How can my body be this weak when I get plenty of exercise? Why do I feel like a 90 year old man? If Vioxx helped me, what is wrong with me? So I did some research and asked my family doctor what was wrong with me. Since I didn’t have any insurance, my doctor said he could test me for different things, but it would cost me a lot of money so he gave me an exercise sheet and some Celebrex and sent me on my way.

After so long, I refused to listen to sit on the sidelines and go through pain. I wanted to get to the bottom of it. So after doing some research, I found out what Ankylosing Spondylitis was about. I just knew that I had this disease since it started in the hips and lower back. So, I drew some diagrams of where the pain and problems were in my body and made a list of what I have been diagnosed with and what I thought I had but haven’t been diagnosed with yet and I had gotten myself a new family doctor. When I went to see him, I explained that I wanted to know if I had this disease. AS is a little difficult to be diagnosed with, so my doctor thought it would be a long shot so he tested me for the HLA-B27 gene. When I went back to see him, he couldn’t believe that I had diagnosed myself! He had told me I was very smart. I guess if you do your homework, and you have a body of a 90 year old man, and you can diagnose yourself with AS, it makes you look smart, like a doctor! LOL!  So he sent me to a Rheumatologist. I didn’t know it would be so expensive for one visit (Over $200). But when I went in with $100 cash and a $10 check from the salvation army, they felt pretty bad for me. That one visit I finally found out that I, indeed, had Ankylosing Spondylitis! I was relieved but kind of sad. I knew the rest of my life would be filled with doctor visits and I would have to take medication for the rest of my life. He tried putting me on Bio-logic meds and I was so scared to take anything that could cause cancer, so I refused.

A year had past and I was working on getting help from the state to help pay my medical costs. But since they couldn’t make a decision within 90 days, they had to give me a medical card by default. SooOO! I used my medical card as much as I could to try and get some tests done on my back to see what the damage was. Turned out, my lower back was fused and I had some other stuff wrong with me. Thank god I was able to have medical care for a short time because if I didn’t have had that, I wouldn’t have later gotten approved for disability. It took two years from the time I filled out an application to denials and then denial again and finally my hearing. By this time, the judge can clearly see my condition. I went from being 5’11” tall to a new height of 5’6” tall. My back had curved due to this disease and I have a couple of fractures in my spine that are still there to this day.

When I received my Medical Card, I finally had gotten with another specialists who talked me into getting on the TNF Blockers. I started on Remicade, then Humira, and now I am on Enbrel! Enbrel has been a God sent! I still have pain, stiffness, and all of the above, but not as bad as I did back before I had been introduced to it. I now struggle purchasing Enbrel since my insurance won’t pay for all of it. They expect me to pay $700 the first month, $800 the second, and over $1,000 the third and then $97 a month for the rest of the year. Who can afford that? Thank God my doctor has samples for me! I have done been through the Enbrel support programs and other programs and no help since I have Medicare. Bottom line is that since I am married and my wife makes too much money, my insurance doesn’t cover it.

Overall, I feel Enbrel has slowed down my disease down alot and it helps me most of the time. I will never be able to work in factories or even in an office for 8 hour days, but I sure miss my old jobs. My favorite job was working as a welder. I loved building things. Now-a-days I research online, trying to re-train my brain for new ways of contributing to the world. My name is Phil Mulkins, I have Ankylosing Spondylitis, and I suffer from Pain, Joint Stiffness, Severe Fatigue, Kidney Stones, Kyphosis, Fused Spine, Neuropathy, Swollen Joints, and other stuff I try to ignore. But I will not let this disease get me down. I am a fighter and I will keep fighting until the day I die!

Thanks for Reading!

Phil Mulkins

Ankylosing Spondylitis Patient

Illinois United States of America