Tuesday, March 10, 2015

Facing Forward: Karla

Facing Forward is a series that shares the lives of people living with arthritis and other invisible illnesses. The goal of the series is to see how we are similar and how we are different – and to remind us to keep moving forward because we aren’t alone!  

Name: Karla
Location: Cleveland, OH
Diagnosis: rheumatoid arthritis
Age at Diagnosis: Can't remember! 27? 28?

How are you currently treating your condition? 
My primary RA medication is Plaquenil and it has been very successful in keeping my symptoms in check. I supplement with Ibuprofen and heat compresses during flares. I also take a vitamin D supplement that somehow keeps my inflammation levels lower. When my rheumatologist first told me that my vitamin D levels were low and that I could improve my flares by getting more vitamin D, I laughed at her -- but it worked! Who knew?

What are the biggest challenges you have faced since your diagnosis?
As the parent of a special needs child (who has multiple invisible disabilities herself), my biggest challenge is in finding the energy to keep up with all the things my daughter needs on a day-to-day basis. There is no time for flares when you have a 7-year-old who needs assistance with everything -- from dressing herself to preparing a simple snack. Then there are therapies, educational support meetings, doctors and specialists and more. Some days, just the standard parenting run can wipe me out, but this kiddo takes it to a whole new level! 

Despite the struggles, my daughter gives me strength in a way that I never imagined. She has transformed me from a single individual to a "we." Meeting her needs and helping her to learn and grow has given me the strength to forget about the flares and go forward.

What are your favorite tips and tricks for managing everyday tasks?
My life after diagnosis has been all about pacing. I'm sure that most of you have heard of the "spoon theory" by now, but if you haven't it's all about the amount of energy you have within you to get through your day. On good days, you have more energy (or "spoons"). On bad days, you run out of spoons -- fast. 

Over the years, I have become very conscious of the number of spoons I have left. I strive for efficiency over perfection. I do my best not to run out of spoons if I can -- and when I do, I try not to push it overboard (sometimes, you HAVE to, but I try to avoid that as much as possible).

How do you manage to keep facing forward every day? 
I am extremely lucky and grateful to have a supportive husband. He is my stash of extra spoons in waiting and my true soul mate. I've also got an amazing little girl to keep me on my toes: if I turn around to look behind me for even one minute, who KNOWS what she'll be into!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Things are going to change... no doubt. But with each thing you set aside, there will be something new. For example, I found that crochet helps me to keep my hands strong and flexible. I began messing around with dolls after we adopted my daughter and now design dolls and patterns for sale (The Itsy Bitsy Spider Crochet). Would I love to be climbing a mountain with my husband? You betcha. But that's not reasonable for me given my particular diagnosis. Making dolls that delight my daughter and others around the world is something I probably would not have discovered without RA. After all, it would be pretty inconvenient to crochet on the top of a mountain!

Do you have a blog you would like to share? 
I don't have a blog, but I would like to share a resource for parents in the Cleveland area who might come across your blog. Connecting for Kids is a nonprofit service on Cleveland's west side that provides education and support for parents of children who struggle. If you live in the area and you're concerned about a child (with or without an invisible disability), please check CFK out!  

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com

No comments: