Friday, September 1, 2017

Facing Forward: Stephanie

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: Stephanie
Location: Boynton Beach, FL
Diagnoses: Rheumatoid Arthritis
Age at Diagnoses: 25

How are you currently treating your conditions?
I am currently taking Enbrel injections once per week to manage the pain. I do my best to try and curb my diet (minimize gluten, dairy, sugar intake) but I have such a sweet tooth it is not always possible. The Enbrel controls about 95% of the pain thankfully.

What are the biggest challenges you have faced since your diagnosis?
Having to explain why I struggle to do simple every day things like turn on the faucet, open a jar, or squeeze a shampoo bottle. I went undiagnosed for 5 years and managed the pain with Tylenol sparsely and I adapted to doing things (like using my teeth to squeeze a bottle of shampoo). I was naturally adapting to not being able to do things and never thought about it until someone would see me doing it and comment on it, then I would have to explain the pain I am in and the difficultly the swelling makes it to do everyday tasks.

It is also a challenge to talk about this with close friends because I always feel like no one truly understands and it is so hard to explain. People associate "arthritis" with old age and not understanding rheumatoid arthritis is a chronic illness and can affect any age. I struggled in silence for years only using my husband's shoulder to cry on and as a sounding board because I did not want the "poor you" comments or looks from friends and family who really didn't know what else to say. I don't blame them though, it took me a long time to come to terms with this and I am still comprehending my lifelong diagnosis and how it affects me now as a new mom and how I will have to deal and manage the pain for the rest of my life. 

As a new mom, I am challenged with making decisions based on my ability to do certain things, for example: when it came to breastfeeding I was fortunate enough to be able to exclusively breastfeed my daughter but when she was about 7 weeks old I had to make the decision to go back on my medication and continue or stop breastfeeding but not for the reasons other moms stop (low supply, pain, time consuming, no desire to breastfeed, etc). I had all the struggles of other breastfeeding moms plus a need to take medication in order to walk (my knees had swollen to almost double in size). Thankfully I was able to take a medication compatible with breastfeeding and continue on in that journey. I just had immense mom guilt of depriving my daughter of breastmilk because of my own health issues. It's a challenge to think of your condition ON TOP of all the things new moms worry and think about.

What are your favorite tips and tricks for managing everyday tasks?
I take my time and know my limits. My body will tell me when I am not going to be able to open the jar or squeeze a bottle or pull the car seat out without the shooting pain. I have to take a moment and take a deep breath and try it again, try a different way... or ask for help. I have gotten better at asking for help. I don't have a lot of tips and tricks other than just listening to my body and not beating myself up when I can't do things someone my age shouldn't have to think twice about doing.

How do you manage to keep facing forward every day?
I try not to let it hinder my goals, I work hard to do everything I should be able to do, I am pretty silent about my condition and because it is an invisible illness, people forget to ask about it. Which I'm ok with, because if I had to talk about it all the time, I think it would be hard to stay positive and face forward. The thing I always try to do is turn the well-meaning, but often negative comments ("wow I can't believe you have to deal with that", "that's awful", "I feel so bad for you" and I've even heard "that sucks") into a positive, I can still do everything others can, it might just take me a little longer or I might need a little more help but I can do it. I don't want to be looked at or treated different which is probably why I am so private about my illness.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Wow. My diagnosis day was so emotional. I couldn't stop crying. I thought my life was being cut short and there was so much I hadn't seen or done (I was unmarried, no kids, didn't own my home, etc). It may sound dramatic but my life flashed before my eyes. If I could go back to that day, back 4 years, I would tell myself "You can do this! You will persevere and figure this out. You'll be able to see and do everything you're supposed to, everything others your age do and you'll be able to do it without the average person even knowing you have this condition." When I was first diagnosed, I craved a community of others, similar to me, who were also diagnosed with this condition at a young age and I had such a hard time finding that. I would also tell myself that it's out there and I would find it one day and that talking about it helps.

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