A.S. Face 0242: DJ Maschino

DJ Maschino

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!

– DJ

San Leandro, California United States of America


15 Responses to “A.S. Face 0242: DJ Maschino”

  1. Thank you!

  2. Dear DJ,

    Thank you for sharing your story with us. I have just finished reading it and I am in tears. I understand what you meant, I think we all do when you said that reading them gives you comfort knowing you are not alone, it isn’t sick, it is human nature to need to have someone understand what we are going through in order to survive. I hope that you are able to find something that fills the void of not playing baseball anymore. I have lost things I loved doing and was good at, but I find new things to do, that is just as rewarding as what it has replaced in my life. Thank you so much for having the courage to share your story, it does take tremendous courage to be honest with our selves and others, it is one of the reasons I ended up being Face 62, on a site I created. 🙂
    Sincerely Cookie

    • Cookie,

      Thank you for giving me and others a sounding block! This site has been truly therapeutic for me. I don’t think anyone in my family or any of my friends really understands how bad this disease is. Its been so frustrating. Seeing others have the same struggles as I have and have had makes me feel like what is happening is real and not just some nightmare I go through almost everyday. It helps me to except that I have AS and that I am not alone. It’s almost a little freeing! You may be #62, but know many of us think you are #1. Thank uou!

      DJ

      • Dear DJ,
        You are so welcome. It has been therapeutic and healing for me also. Thank you, you all make me feel like number one! I understand how you feel, because it has meant the same for me.

        Sincerely Cookie

  3. Bravo DJ,
    It’s certainly not sick or wrong being comforted knowing you’re not alone anymore. It’s the best medicine I’ve had in years (but I’m a big fan of Enbrel and more recently Voltaren). There is strength in numbers-me thinks Cookie has started a movement!

  4. I thought I was dying too when no one could diagnose me and I couldn’t move. Horrible. I know exactly what you mean when you said “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”. I also had to mentally psyche myself up before making a move a bit like running across a mine field or something.

  5. I appreciate your story. It is similar to mine, I am 36. Matter of fact, it is almost identical in how yours started. I broke my L5 in 1993 at age 18 for no reason. There was no treatment for my back. I was told not to lift anything or do a lot of activity and it would heal in about 6 weeks, but it is not really healed after 18 years. I had my son at age 18 and the doctor said I probably lifted a laundry basket when I was pregnant and that’s what did it. I knew more was wrong as I started feeling poorly from that day until I sit right here with my heating pad, because its past 6:00 and I am completely depleted for the day. I do not have a diagosis AS OF YET (I am not giving up until some doctor finally realizes it). I have degenerative disc, spondylilothesis in the neck and lumbar regions, spondylosis in other discs, every chronic pain and stomach condition you can think of, arthritis all over, forward stopping, hunched shoulders-posture and debilitating fibromyalgia and the whole bit. I stay at about 112 lbs and have been accused of anorexia my entire adult life because I am so bony and frail looking at times. I also played sports when I was younger and was very active. The Spondylilothesis is just being wrongly attributed to gymnastics from my teen years.

    After 17 years of chronic pain, going from doctor to doctor looking for answers demanding odd tests because there was no way any healthy person could feel as horrible as I always did, and being made to feel like a hypochondriac, having numerous negative tests while dealing with chronic sicknesses, and being told “its just Fibromyalgia,” I finally was diagnosed with Lupus in August of 2010…and THEN the worst possible nightmare occured in December of 2010. My 18 year old son woke up screaming in pain that he couldn’t move his legs outward and that his low back was in excructing pain. He had a fever of 102. I innately knew he had an autoimmune disease and begged my rheumy to not put him on the waiting list, so he went ahead and saw him immediately.I thought he may have Lupus but He is a very smart kid and figured out it was AS before we ever even went to the appointment. He was diagnosed with Ankylosing Spondylitis in January of 2011, after his x-rays showed definitive fusion. His experience has been hell. He fought the disease during the rest of his senior year and graduated with a 4.1, received academic scholarships, and now he is in college and doing well with grades but the depression and pain are interfering with his life. He has tried some infusions of Remicade but had side effects and developed tachycardia and had trouble with getting iv’s to take. He has not taken anything other than advil since September and lately he has pretty much been staying in his dorm room for the rest of the evening after classes because social life is not feasible with the fatigue and pain he is dealing with. There is a possibility of him starting Humira injections but he is wanting to wait until summer break so he can be at home when he starts. His depression is really bad, as is the anxiety.

    I cannot understand why my doctors do not literally see that I have AS. They say that I don’t have fusion so its not AS regardless of all the other facts. Actually I am not sure that I don’t have fusion and that the mri’s are being misinterpreted as Spondylosis instead of AS by someone who is either incompetent or unfamiliar with AS and doesn’t even know what to look for.

    I passed this horrific disease to my son, isn’t it obvious?

    Sorry for such a long response. I too, find the “misery loves company” adage to be all too true.

    Amber Ferguson

    • Amber,

      So sorry that you and your son are going through this. Please don’t blame yourself for your sons illness! You didn’t do this to him! Some times life throws you a curveball and you just have to sit back and drive it to right field. I know things may seem tough right now but you are stronger than you think. I would suggest getting a second opinion. Someone who will look at all of your symptoms objectively. It sounds like your doctor has his/ her mind made up and no matter what new symptoms you show. I wish you and your son the best. Stay strong. We are all with you!

  6. I agree I would rather hear stories and info from people who are living with AS because they understand the best and their experiences are more useful to know!

  7. i love to read about other people who have had all this happen to them also. MY doctor said it was all in my head even though i suffered pain for years. We need to get everyone out there to become aware of ankylosing spondilitis, to know what it does to a persons body, mind and life. We need a project to educate everyone out there

    • Cathy,

      Well said! It seems like no one knows what it is or has ever heard of AS. If it wasn’t for websites like this, I wouldn’t know anyone who had this wonderful disease other than me. A teacher of mine once told me, “knowledge is power.” It is so true! The more we know about this disease and the more others know, the more research will be done and maybe someday there will better medicine for us or a cure. Stay strong, we are united with you!

  8. Update: It has been about 17 months since I was diagnosed with AS and I continue to work out, strengthen my core, and eat healthy. For the most part, I have learned what foods set my stomach off and avoid them at all costs. I am back up to 205 and although I still have have flareups that effect my stomach and joints, they are nothing that I am not able to deal with. My latest MRI shows that a few of my vertabrae have fused and due to that I am not having the severe back pain that has plagued me for half my life. I still have days with back pain and I have yet to have a day where I dont have pain in my knees, hips, neck, etc. but I am doing as well as I have in years and feel like I am finally getting my strength back. I have worries about the potential side effects of Enbrel and the other medications that I take, but as I have told my friends and family I would rather live a shorter life with manageable pain than a long life of misery! I hope all of you are doing well and love to know that we have a place to come to vent, rally around each other, and get support. Thanks again Cookie for giving us this forum!

    Stay positive, keep moving, and keep kicking AS!!

    DJ

    • I would rather live a shorter life with manageable pain than a long life of misery That is exactly how I feel DJ!

      You are most welcome it is my honor and pleasure.
      Take care my friend

  9. UPDATE – Its been a year and I am doing better than ever. I continue to work out 4 -5 times a week and eat a clean diet. I have changed up my workout regimen a little and have focused more on core exercises, planks, and walk 35-50 miles a month with my dog, which has helped tremendously. I can’t stress enough the importance of a strong core and flexibility! Start slow and and then add additional exercises. It will be painful when you first start to do things but trust the process, stay within yourself, and eventually it will get easier and you will begin to do more and more things.

    In fact, I turned 40 in September and on my birthday I took up my childhood love of surfing again after AS is not a death sentence! It takes a lot of determination, the right medication, and the will and mind of a warrior, but it is in fact possible to manage AS. Remember, you are your own best advocate. If you are on medication and it is not working, talk to your Rheumatologist about trying something else. Eventually you will find the right combination and start down the path to manageable pain.

    The last advice I can give you is to keep moving! If you are sedentary and sit around, you will never get better. Your joints and back need to be lubricated and sitting on the couch or staying in bed will destroy you. Stay positive, get moving, and keep kickinAS!!

    DJ

  10. Sir I’m little bit confused about my job . I as patient I can’t do sitting job can I become a DJ is this job suits me according to my restriction

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