Friday, May 27, 2016

Facing Forward: Ashley

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: Ashley
Location: Colorado Springs, CO
Diagnosis: Scleroderma and Raynauds Phenomenon
Age at Diagnosis: 25

How are you currently treating your condition?
Currently taking prednisone so I can physically move around. Cellcept and Hydroxychloroquine to try to treat and hopefully slow the Scleroderma progression. Blood pressure medicine to help blood flow for Raynauds. Also on several antacids to help with the side effects of having Scleroderma in my esophagus.
What are the biggest challenges you have faced since your diagnosis?
My biggest challenges are losing my independence and trying to love the "new me." I no longer can tie my hair up into ponytails and such because my fingers can not grasp like they used to. My kids carseats are very hard for me to unbuckle. Simply bending over to clean toys off the floor is nearly impossible. Picking up and carrying my 1 year old is hard because my wrists don't bend anymore. My body is just stiffening up so daily tasks are incredibly difficult.

What are your favorite tips and tricks for managing everyday tasks?
I love my jar opener, it helps open all kinds of things for me. Using shampoo and other beauty products with pump bottles is helpful. Doing the dishes with nice warm water is soothing on my hands - I stop and do my hand stretches while my hands are warmed up. My heated blanket and microwavable heat packs have been a lifesaver while having a bad Raynauds attack. I have also learned to stay calm and not to get worked up over something I can't do.

How do you manage to keep facing forward every day?
I manage to face forward for my children. I have a reason to wake up every morning, two beautiful sons that are anxious to learn and explore our world. My family has been such a great support system. My mom takes my son to school on days my hands can't manipulate the carseat buckles, which has sadly been more often than not lately. My boyfriend and I have been together for 8 years, so he has been my rock during my health spiral. He lovingly does my hair for me and helps in any way he can. My family members are so helpful with housework and watching the kids while I have appointments. My dad will take time off work to drive me to appointments in Denver. I am surrounded by good people that love me for me. I am still trying to not mourn the loss of who I was before the disease. I am still me and can still live my life to the fullest. Some days are definitely harder than others. I make sure I always have something to look forward to. Weather it is planning my son's birthday party or something as small as trying a new recipe. I need to live with exuberance for my children and be the person I want them to remember.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Start occupational therapy for your hands right away!

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