A.S. Face 0176: Keith Savage

My name is Keith Savage, 32 years old from Hawthorne, NJ. I’ve been married to my best friend Kim, for over 10 years & we have 3 beautiful kids together; Trevor (9), Kailyn (7) & Charlotte (2).

I have been extremely hesitant to write about my story because I have no desire to relive or dig too deep into how I feel. I know it may sound odd but my day consists of hiding & or suppressing my feelings with laughter so I do not have to face my fears or worries. I’m a comedian, not an actual paid stand up comic, but I love to make people laugh. Like my first picture where I’m dressed like a fool (Cousin Eddie from Christmas Vacation) to make as many people laugh at a party as possible. That is my escape, my distraction to what our reality of having AS gives us everyday.

I was diagnosed back in 2007 with symptoms dating back to at least 2000. It started with horrific pain in my heels, it felt like I was standing on rail road ties all day long. Then my hips and spine & so on & so forth. Thing is I’m no stranger to AS & the horrible effects it has to not only the diagnosed but our families as well. If you look at my second picture it’s my father Kevin & myself. He came home from work (delivering propane tanks) on my 5th Birthday & never worked again.

My father eventually had his spine fuse solid & endured excruciating pain everyday of his life until 1/25/09. That was my wife Kim’s birthday & also the day my father was no longer in pain. He died from cancer unexpectedly & only 3 days after being diagnosed. He was & still is my hero. To grow up seeing someone you love, admire, & try you’re hardest to emulate deal with so much pain everyday was so hard. I knew how hard it was on my mother, taking care of my dad everyday & myself & older brother while providing for the family.

When I first felt the pain in my heels & back I was afraid to go to the doctor. In the back of my mind I had always feared that I would end up with AS. My fears were correct & I found myself in a whole new world. I was crushed by the diagnosis but determined to not let it slow me down. I succeeded for 4 years until March of 2011. It was all too much on me & my family. I stopped working & have been on disability since.

I’ve tried the entire range of medications & combo of medications that the medical world has to offer us. Nothing. Not one drug or combination of drug has worked. My spine is fusing so quickly that every doctor I have been too agrees that it is too late to stop or even slow the process. As of now my lower spine is fused, my neck is beginning to fuse & my middle back has 4-5 discs remaining that are 90% eroded. So now I see my rheumatologist every 2 1/2 to 4 weeks in order to get injections as close as possible to my lower spine & neck to try & numb the area & make the fusing less painful. It has it’s advantages & at this point I just feel like a pincushion but it does yield some relief.

See picture #4 from my last visit. So with all of this said I know my progression is much more aggressive & rapid then most. I have fusion beginning in my extremities as well but not at the same rate as my spine. 3 weeks ago I ruptured tendons in my wrist due to the meds & AS destroying all connective tissues as well.  So at this point the only way to live is day by day.

My wife & best friend Kim deserves the biggest, best, award a person can get. Most days, 5-6 a week, Kim has to help get me out of bed, in & out of the bathroom, & get dressed. Essentially she has 4 people to take care of on her own between myself & our 3 kids. I can’t explain what she means to me, she does all of this without any hesitation at all & I couldn’t imagine being in her shoes. In a way to me this disease is harder on her than me. I just sit back & deal with pain, she is constantly going from early morning to late night without any time to herself.

Thank you just doesn’t say enough. So I keep on rocking everyday due to my wife & 3 kids. (picture #3) I’m not sure what the future holds but what I do know is because of the support system I have at home with my wife as my biggest supporter & the online support system I have from Jennifer, Kelly, & Cookie I have so many great resources & friends. Words can’t express how thankful I am to have everyone on my side. Laughter is how I get by, is so much easier to laugh with others than cry alone. Keith Savage=

Hawthorne New Jersey United States of America


15 Responses to “A.S. Face 0176: Keith Savage”

  1. Nice story.I hide a lot also.

  2. Keith,

    I am so glad you shared your story and I am so very very glad that you have Kim. I love your spirit and of course I love your humor – it is a big reason why we have become friends. Humor is a positive way of dealing with – anything but it is especially powerful in dealing with pain and the fear of our futures.

    You are amazing! You inspire me for so many reasons but especially to keep on keeping on in my life in general and in my AS advocacy efforts.

    Big Huge Hug wonderful friend. xO
    Jenna

  3. Wonderful story! My husband and children have to deal with this disease also. i worry about what they will remember about me! I try not to let it stop me, but some days AS wins.

  4. I am so sorry that it hit you so young and is advancing so fast. My mother and likely my grandmother had AS but were never diagnosed– lots of pain but they also had diabetes and other ailments so it was explained away. I always lived in fear of becoming diabetic….thinking that was my demon…but alas….AS was under all of it. I can relate to your desire to bury it and just keep on moving forward– I do the same thing because I see no value in dwelling on what was instead of focusing on what is….I wish you the best Keith

  5. Thank you Keith for sharing your story.

  6. it is very hard to tell others how bad are some morning’s when trying to go down from the bed…
    everyday is another day with lies and acting like everything is allright…no pains, weaknes or/and fatigue. I do not know which is worst pain or fatigue.
    my refuge is on work even everyday due to fatigue is extremly hard, I miss those day when I was able to perform 100% of my capabilities…

    lucky you that your wife is a great support.
    I wish you less fatigue and pain 🙂

  7. Thank you for putting your thoughts together to explain a situation that really sucks for anyone to have to deal with. You look like a fun person who tries to stay positive and has a really loving wife and children. Stay as positive as you seem. You never know what new possibilities have yet to be developed that could work for you. I will never give up!

  8. I can’t thank everyone enough for your kind words. I’m so glad we all have someone like Cookie to bring us together & share a dialogue. This really helps me personally & I hope it helps others just as much. Feel Well & thanks.

    • Dear Keith,
      Thank you so much for sharing your story. Thank you for reminding us to fine humor and laughter in our lives, most of all for reminding us how special our loved ones are for standing by our sides. You are most welcome believe me it has been my honor to do this and has been so amazing to be a part of. It has brought peace and contentment in my life.
      You were right… it was a face worth the wait…. I know the struggles it takes to do this and the places it sometimes takes us. That is why I ended up being Face 62.
      Sincerely Cookie

  9. Wow, how honest. I wish you relief. Never lose hope my friend.

  10. Dear Keith,

    Thanking you for sharing your story with me. I am new to AS, diagnose reecently in Jan. 2012 for this.

    I wish you relief.

    Regards

    RKC

    • Thank you for your support. If I could pass along any advice it would be to always stay positive!

  11. I relate to your comedian style of dealing with this disease! I have the same outlook. I do the same things, hopeing the truth doesn’t show. Your wife is an amazing women! =) Thank you for sharing, you made me feel a little less alone.

  12. Keith-
    As you know, we have seen each other in town and at parties, sports, etc for years,,,, and I would have never known of your condition had you not told me recently. You and your wife always have such an enthusiastic and happy exterior…. and it is just such a testament to your positive attitude and sense of humor. We all go through difficult times … we all have issues … and I think it is very brave and heroic to be able to open up and admit them to others.

    You are a real inspiration for me ,,,, and you are undoubtedly a hero … a superhero … to Kim and the kids.

    As I told you before, if you ever need anything …. no matter how small or big… do not hesitate to reach out to me, and I will do my best to help or be there. See you at the Cubs game.

    Cheers. Nick Manzi

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