A.S. Face 0886: Marcy Standish Heil
Hello fellow survivors my name is Marcy Standish Heil I am 37 years old I am from Wyoming and am married to an amazingly helpful and supportive husband named Ray and have two beautiful kiddos that keep me moving constantly and wear me out relentlessly. But most of the time I smile through the pain and fatigue in fact I’ve made a life doing just that. I was officially diagnosed with what they used to call Reactive Arthritis and sometimes Reiters Syndrome in 1998 at 22 and then when reactive arthritis was genetically confirmed as AS I was rediagnosed in 2001at 25.
I can remember significant joint pain, and eye issues as early as 15 years old; ofcourse it was chalked up to growing pains and pinkeye then, eventhough my father has Crohns Disease, I didn’t have anyone really pay attention to the pain or fatigue until I had a massive iritis flare up in 1998 that had me in and out of the ER for weeks and the eye dr daily ,it lasted for almost 2years my treatments then included massive amounts of prednisone and Imuran and sulfa drugs as well as prednisone injections straight into my swollen eye atleast once a week. At the end of this flare up that I refer to as my lost years I finally went into some what of a remission when Methotrexate injections were added to my long list of meds. I also went through a nasty divorce followed by a selfish poor me phase until I met my wonderful current husband in 2000.
We have been through so many devastations and triumphs with AS. From medication sickness, mostly percocet and prednisone, to infertility and disability from time to time but he’s always been right there with me, even literally carrying me from time to time.
But the most amazing and hardest gift to accept that he has ever given me besides my beautiful children was the gift of healthcare, my husband joined the military specifically because they could not hold my pre-existing condition against me as so many previous jobs and companies already had, then we miraculously became pregnant right after enlistment and years of no success due to fibroids and scarring from prednisone. Our beautiful daughter Zoey is one of our un explainable gifts and our amazing son Zayden was our second 6 years later through the gift of adoption.
Through all of these years I was on and off of so many drugs but never gave up, even though sometimes it hurt so very badly that my stubbornness is the only thing that kept me going, that and the three loves of my life.
Almost two years ago I was over medicated, over weight and over all of the BS that comes with AS so completely that I decided to try gluten free living after my husband shared the research with me, I honestly didn’t think it would work, but I had been on everything else and had Drs tell me to just get used to this life but I couldn’t keep up with my kids, my husband, my job I couldn’t live that life anymore because it wasn’t supposed to be my life.
Amazingly the diet started easing the pain little by little and I realized I didn’t need my auto refills on humira and percocet any more so I stopped and haven’t touched them since.
I still have pain, every single day I wake up stiff and limp around for a couple of hours, at the end of the day of working on my feet I hurt in my hips and spine, but now my biggest fight seems to be the damage that so many years of prednisone have done to my bones. But I keep on fighting and conquering every single day by day sometimes hour by hour or step by step like so many of us do. Sometimes its all so very heavy that I feel that it will crush me, sometimes it does, but never for very long.
I get up and look at my children and say a silent prayer to a god that I really don’t believe in anymore that I will just function long enough to walk beside them as they take on the world. As of today dear friends I’m still here.
Thank you for listening and caring and to all my fellow warriors just keep on fighting.
Marcy Standish Heil
Wyoming, United States of America