San Leandro, CA
This is my story….
I can’t tell you when my own personal hell started to happen, but I believe it was sometime in high school. I remember always having what I thought were pinched nerves in my back and was constantly taking over the counter pills like momentum and Advil all the time for back pain. I was a pretty good athlete growing up and was lucky enough to receive a few a few division I scholarships to play baseball. I went in during the fall of my freshman year and was striking people out left and right and was on top of the world. My coach was even telling me he was going to make me a lot of money someday. Then my world came crashing down. One fateful morning in late October of 1992, I woke up in excruciating pain in my lower back and couldn’t move. I called my athletic trainer and told him my lower back was killing me and he told me to come over to the athletic complex right away. That is when my life changed forever. Long story short, I had fractured L5 in my lower back and was confined to a back brace for 6 months. My baseball career was over and little did I know I was in for a lifetime of pain.
Years went on and I dealt with sciatica, muscle spasms, etc and was eventually diagnosed with degenerative disc disease. Luckily (if you can even say that) my pain was confined to my lower back. Every morning and every night I had troubles getting my socks on, standing, sitting, etc and after awhile I learned to just accept it and eventually the pain became part of my life and I learned to deal with it and move on. As a former athlete, I worked through the pain and was able to strengthen my abdominals, lower back, etc. through stretching, core exercises, and working out. No one really knew the pain I was in until they saw me try to walk after sitting, standing, etc as I am in great shape and take good care of myself. That was until March of last year.
The past year has been one of the most challenging physically and mentally of any of my 38 years. Losing my baseball career was one thing, but losing me was a whole new thing all together. In March of last year I started to have pain in places other than my back. All of a sudden all of my joints including my feet, ankles, knees, hips, fingers, elbows, etc. all started to ache. Every step was excruciating and it got so bad that an 80 year old could beat me in a foot race. I looked like I was physically crippled and felt like it too. I was exhausted at 6 PM every night and had to think of the best way to get from point A to point B in the least amount of pain before I decided to move. Worse yet, everything I ate started to make me sick and had me running for the bathroom within 10 minutes. Due to this, I went from healthy 6’2 210-215 down to about 185 at my lowest point. I began to think I may have cancer, HIV (even though I have been monogamous for years with my fiancé) who knows what, so I went to my doctor and had him test me for HIV, Cancer, and a he did a whole spattering of tests, but nothing came up. Finally he said that he couldn’t figure it out and he sent me to a Rheumatologist who I believe saved my life…well at least my quality of life. I went to my new Rheumy with all my MRI’s, bone scans, x-rays, personal notes on all my ailments, and finally I had someone who understood what I was going through. She said, “I think you have one of these seven spondyloarthropathies” and eventually I was diagnosed with AS. It turns out that it probably began to rear its ugly head because I stopped taking Voltaren (which I had taken for severe elbow arthritis from pitching for years), as I had run out of it and my doctor would not write me a new prescription until I came in for an appointment. Of course I couldn’t get into him for a few months and then all hell broke loose.
Diagnosed with AS, I was put back on Voltaren and started on weekly injections of Enbrel. Within two weeks, my joint pain and stomach issues started to subside. I began to gain my weight back and after about 4 months my muscle spasms and back pain started to go away. I am back up to 200 pounds and still working out, but now I have started to have severe hip and knee pain. Compared to the back and joint pain I used to have though, I will take it. I have lived with back pain half my life and it is such a relief to finally know what is causing the pain. I often have days where I get down and think why, what if, etc but I always try to stay positive and remind myself that there is always someone worse off than me and that I could be laying in a hospital on my death bed. What doesn’t kill us makes us stronger and knowing that all of you are going through the same types of challenges that I am on a daily basis makes having this debilitating disease a little bit easier. This may be kind of sick and wrong, but it gives me comfort knowing that I am not alone and that others out there living with the same types of pain and challenges. Reading through your stories is so much better than reading through the countless descriptions, articles, and journals on AS. It feels more personal and also helps me to see that both my family and I aren’t the only ones that have to deal with the day to day issues that this disease brings us. Thank you for your honesty, your strength, and your braveness. There is definitely strength in numbers and every one of our stories helps.
Best of luck and keep fighting. We will all make it through this together!
San Leandro, California United States of America