This Gluten Free Love Story was lovingly submitted by Irish Heart
Honeymoon. Galway Bay, Ireland. My husband and I began the silly tradition of drawing a heart with our initials in the sand of any beach we walk on. (Once, I surprised him by spray painting it in red on the icy snow for Valentine’s Day — which I deemed very clever — until the cat walked through it while it was still drying. Thank goodness the hubs — and the cat — both have senses of humor.)
From the moment we met, my big sweet Irishman promised he would always take care of me. When I was inexplicably ill and in excruciating pain every day for 3 years (Nov. 2007-Nov. 2010), going from doctor to doctor and finding no answers, my man (economical of words, but long on patience, unconditional love and support) put this up on the fridge for me to see every morning: “You may have to fight a battle more than once to win it” (Margaret Thatcher).
At first, I thought: “Really? smarmy quotes? Are you freakin’ kidding me? Yeah, that’s what I need, some #&%$! patronizing quotation.” I almost ripped it down. I thought…I don’t want to hear THAT! I cannot fight anymore!!
And yet, I did. Why? Because I would look in those gorgeous blue eyes of his every day and vow “I am going to get my life back! For him. For us.”
We had only been married 10 years when this “thing” really knocked me down. This is not the first marriage for either of us–but as we like to say,” It’s the last”! We both recall him saying to me when we first started dating (rather ominously, as it turns out) ” I think you have an autoimmune issue” as I began to develop more and more health problems. Shortly after we married, I was diagnosed with painful OA, “IBS”, GERD and worsening migraines.
Right around our first anniversary, I had a surgical breast biopsy and removal of a mass. Then, I needed two shoulder surgeries and I suffered a terrible early menopause and major complications requiring a total hysterectomy. I had never been able to carry to term and sadly, had no children, despite infertility treatments years before. He was used to being the patient “nurse” when I needed him to help me recover, yet I never let this crappy health stop me from doing things.
And he never became irritated or frustrated with me. Not once.
But, as I went seriously downhill, right after my beloved Dad died (likely from unDxed celiac) we saw that this was clearly more than just OA, GI tract issues and the dreaded (and ultimately, incorrect) fibromyalgia label that never really made any sense to us when we heard it back in 2004. When I broke out in burning nerve pain, parasthesia, and ataxia, we did not know what was happening to me. My weight plummeted 90 lbs. Then, I lost muscle mass, most of my hair and I could not eat. I sobbed from the pain. I looked like a balding little old lady and I stopped looking in mirrors. The light was gone from my eyes. Yet, he said I was still beautiful.
My husband made me drink concoctions of water, salt and sugar to keep my electrolytes balanced. We tried everything from juicing foods to ridiculous elimination diets to try and nourish me and keep food in–to no avail. I was so ill nearly every single day. I was going out of my mind with cognitive dysfunction, insomnia and anxiety. I have never been anxious in my life! He would just reassure me that I was going to be okay and we’d figure this out. I searched on the internet for answers, but doctors misdiagnosed me repeatedly, offering drugs that only made me sicker.
True love is propping a very weak and nearly faint spouse up on the toilet while holding the wastebasket for her, too– for whatever comes out the other way. He has picked me up off the bathroom floor when I was so spent from bouts in there and held cold compresses on my head to soothe the migraines. I had so many tests done through the years and his smiling face was always the first thing I saw when I came out of anesthesia. He has done it all– dressed me, massaged me when I could stand it, and bathed me.
One day, as I tearfully struggled to get dressed, he came in to help me put my bra on. As he fumbled with it, he quipped ” Babe, I know how to get this thing OFF, but….” We both burst out laughing.
That poor guy watched more repeats of” That 70’s Show”, “Scrubs”, “MASH”, “Cheers”,” Frasier”, and ” Seinfeld” as I flooded myself with comedies, thinking it would help my psyche. That’s how we survived–Humor!
The sad part is we essentially lost 3 years of our lives. As I deteriorated right before his eyes, he begged doctors to “Just give me my wife back” and I thought my heart would crack. He did not believe them when they said I was “just stressed out and needed to do volunteer work”. He and I both knew this was organic, not psychological.
He is 10 years older than I am and when he retired, we planned on traveling, taking photographs and writing articles. Everything came to a screeching halt. One day, I tearfully told him he should divorce me; I would understand. I felt I was ruining his life and I didn’t want him saddled with a sick wife. I was an energetic, vivacious crazy -fun thing when he met me. My big sweetheart said quietly and firmly, “Don’t ever say such a thing like that again! You’re my girl and my best friend. I’m not going anywhere. We’ll get through this together. ” I could cry at the sweetness of that memory.
Every night as he kissed my feverish forehead, I would ask “tomorrow will be better, won’t it?” And he told me it would. I held on to that hope. He took me to countless physical therapy and massage sessions. Because of the brain fog and slow reflexes I experienced, he had to drive me everywhere. He indulged me when I wanted to try yet another doctor, a naturopath, acupuncturists, and biofeedback specialists. We spent a fortune on useless therapies. When none of those worked, I kept researching. He listened patiently when I told him I thought I had Celiac Disease and even when the initial blood panel was (falsely) negative, he felt as strongly as I did that this was what was surely killing me.
He never gave up on me.
When I finally got a Celiac diagnosis (Nov. 1, 2010) , we did not weep; we shouted for joy. It was our answer!!
From that moment, he’s done everything in his power to help me heal. He learned how to make our gluten-free bread, helped me clean out the pantry and the cooking supplies and bought me whatever we needed to start fresh. He willingly does the grocery shopping and knows how to read labels. He went gluten-free voluntarily with me, citing the perils of cross contamination was a concern to him. And because I was so ill and weak upon DX, making separate foods was just too much for me. Giving up his beloved Guinness for me? That’s crazy mad love, baby! :)
I feel so bad about all the things we have missed, but he doesn’t care. All he cares about is me getting well. And I am, slowly but steadily. We have finally been able to travel again during the last year and he helped me assemble what we need: a Koolatron cooler for the car, a “portable kitchen” in a bag, with pans, utensils, strainers, disposable cutting boards, etc. Even if I am not entirely 100%, I have vowed I will not lose any more days.
He tells everyone that I saved my own life, but the truth is, I could not have done it without him. Even after diagnosis, the road has not been easy and I have felt discouraged at times, but I push on and we laugh every single day! I have spent two years in rehabilitative physical therapy and he has waited patiently for me during each session. Finally, I got the okay from my doctor to return to the gym (whoohoo!) and he walks on the treadmill beside me, coaches me through the strengthening machines and encourages me all the way. He is my rock and my heartbeat and I know how blessed I am.
On my birthday recently, he gave me the Celtic symbol for courage and perseverance and I wear it around my neck. I will beat this thing–for him. He says I am courageous for fighting for answers but no, HE is the courageous one for sticking with me when things got really, really bad. He is my “Anam Cara”, a Celtic phrase meaning “my friend of the soul –one who always beholds your light and beauty and accepts you for who you truly are.”
He tells me every day: “We got this now, Babe. We’re almost there!” and when we walk on the beach in Florida next month, we’ll draw yet another heart in the sand. Together.