Caregiving with RA: This Is What We Do Now
As I balanced myself like a monkey atop my kitchen countertops to reach the top shelf and wipe it free of potential gluten contaminants, I understood love on a new level. I am no longer the only chronic patient in my marriage, I am also a caregiver - a role you never foresee yourself having to step into.
Towards the end of last summer my husband became sick and then he grew sicker. We both chalked it up to a phase until he ended up in the ER - twice. The first time in an ER is easy enough to excuse away. Ending up there again only a few days later, you begin to listen to your gut and know that it is time to fight for your loved one.
Fight I did.
After twenty-plus years of living with chronic illness, I know what subpar care and misunderstanding look like. I could not watch the man I love suffer through that. ER doctors never like caregivers like me, the ones who are, ahem" right. I knew he was not fine, and I knew the tests that needed to be ordered. I tried to calmly reason with the doctors, knowing that this is the best attitude to get anything done. The original doctor did not like my opinions. With no explanation, we were handed off to the chief who proceeded to tell us that the tests we were requesting were costly, and we did not want to have to pay for those.
The chief's assumptions about our priorities were all wrong.
Twelve hours later, due to my stubbornness, my husband was seeing a specialist. Eight hours later I was kissing him goodbye as he was wheeled into an operating room for the test we had originally requested in the emergency department.
Thanks to the tests my gut said we needed, we had an initial diagnosis of celiac disease within days. That's when I slept.
It's also when I learned that being a caregiver means mustering a strength and resilience you didn't know possible. You find yourself making decisions without question. This is just what we do now.
Adapting to life as a caregiver
Celiac disease is an autoimmune disorder in which eating gluten causes inflammation of the small intestine. That's how I found myself reading every last label in my kitchen, donating half of our pantry and items like our toaster that can never be effectively cleaned and de-contaminated of gluten. Within days, I too became an advocate for improved food labeling I became disgusted with the amount of food produced in "facilities that also process wheat, etc." I began eating meat.
Having tried just about every diet out there, I settled on a plant-based diet two years ago to help alleviate the symptoms of my own disease. I never preached it, because my disease is not the same as everyone else's disease. What works for me might not work for everyone else. But I grew up in Texas where BBQ is king and had been secretly craving a plate of judgment-free brisket
When I saw how a few parts per million of gluten afflicted my husband for days and potentially threated his life, I opted to give up gluten myself. For me, this meant I could no longer be vegan. It wasn't even a question. I love him. This is just what we do now.
With limited energy due to my Rheumatoid Arthritis and Spondylitis, I simply do not currently have the energy to prepare one hundred percent of our meals from scratch. What a lot of people don't realize is that when you have severe Celiac Disease, you can't go out to eat at a restaurant or order takeout food without fear of cross-contamination and subsequently being sent into an autoimmune flare for days. We did not eat a meal together at a restaurant for nearly four months after his diagnosis. When we finally did, I know we were both terrified, but In-N-Out not only has excellent allergy measures and employee training, they happen to make a killer soul-soothing burger!
It was through extensive reading of blogs from Celiac patients and using resources like Celiac.org that I found a way to bring some eating normalcy back into our lives. This is just what we do now.
I wasn't the only one worried about what we were eating. My husband feared for my drastic change in diet and how it might affect my own disease, because he is a caregiver to me too. I repeatedly reminded him that many autoimmune arthritis patients swear by a gluten free diet, so it couldn't hurt. Plus, I really enjoyed that turkey sandwich the day after Thanksgiving! It seems we're now in a constant discussion about what we are eating, because we care for each other. This is just what we do now.
You earn the label caregiver without ever realizing it's happened. It starts with a few calming words, a hold of the hand, and before you know it you are advocating for your loved ones in ways you never knew existed. You do things you never thought possible, and they seem second nature. Because this is just what we do now.
Becoming a caregiver gave me immense gratitude and respect for the various caregivers in my life. It taught me a language they'd long been speaking out of necessity, and out of love.
I will not say I am grateful for our diseases, but I am grateful for the way we are able to understand, help and encourage each other. Caregiving is a lesson in flexibility and adaptability. When you are a caregiver, you do what you have to without question. You love each other. This is just what we do now.
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