Facing Forward: Jamie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic 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: Jamie

Location: Salt Lake City, UT

Diagnosis: Ankylosing Spondylitis, Peripheral Spondyloarthropathy, Asymptomatic/Silent Celiac Disease, and Fibromyalgia

Age at Diagnosis: Onset at 16 years old but we thought the pain was from a car accident. Official diagnosis was in October 2011, when I was 24.

How are you currently treating your condition?

I recently went back on a biologic, Cimzia. I was off biologics for 2 years because I was pregnant with my son and breastfeeding and did not feel comfortable taking any medicines. I also take NSAIDs, a very small dosage of Percocet, and Meriva for inflammation. Because of the celiac, I follow a gluten-free diet. I am currently phasing out all grains though because that's when I feel the best! I also do low impact exercise when I am able to.

 

What are the biggest challenges you have faced since your diagnosis?

Maintaining a gluten-free diet. It doesn't make me physically sick so sometimes I am weak and have no motivation. But then I have to remember it still causes inflammation elsewhere and that long-term it can give me cancer and other awful diseases. Another challenge is raising a very mobile and active 10-month-old baby boy while physically not feeling well. I stay home with him and some days I go to bed 15 minutes after he does. I am very lucky to have a great support system for help. Another challenge after diagnosis was maintaining friendships. When I was put on a cocktail of drugs, the fatigue made it so I couldn't keep up with social events and lost a few friends. Chronic pain is depressing and isolating and that has been an additional challenge.

What are your favorite tips and tricks for managing everyday tasks?

Accept that you can't do it all and ASK FOR HELP. My husband works very long hours but he is a great help on the weekend. But I struggle during the week. I've recently hired part-time help so that I can take care of myself in order to be the best mom for my baby boy. Each day, I tell myself that I can do one big task like grocery shopping and that's it. Even if I feel well enough to do more, I know that it will eventually be too much and I'll pay for it later. Another tip is to try to keep an organized home. I find it reduces my stress.

How do you manage to keep facing forward every day?

My son has given me a new outlook and attitude. I want to be better and do better. When I feel down or hopeless, I remember that I am his world. This gives me the drive I need to stay positive and keep going. Attitude and perception make all the difference when you have any chronic illness.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

You're going to have great days. You're going to have OK days. You're going to have bad days. You are alive and breathing and you are strong. You will get through this.

Do you have a blog you would like to share?

My blog is Letters to Andrew. I write letters to my son about everything, but mostly raising him while dealing with my chronic illness and depression.

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