Friday, May 20, 2016

Facing Forward: Mandy

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: Mandy & Joe (the dog!)
Location: Weehawken, New Jersey
Diagnosis: Ankylosing Spondylitis & two bionic knees (knee replacements, and I got a new knee April 4th!)
Age at Diagnosis: I started to have symptoms at age 20. I bent down to get a shoe and noticed my knee swollen when I got back up. It started as a torn meniscus and after I had a scope to get it fixed - it never healed. Over time, inflammation and swelling spread through my whole body. I saw many doctors, tried many treatments, supplements, and diets. It wasn't until May 2014 (I was 29) that I had a doctor who tested and diagnosed me correctly. I was weird because my knees were mainly affected and people with AS are usually males with spine issues. 

How are you currently treating your condition?
I am currently on Remicade infusion every six weeks. It's been life changing! Prior to Remicade, I was on steroids and sulfasalazine. I was afraid of Biologics from things I've read but I was wrong. Biologics have a place and you shouldn't be afraid of them! Prior to diagnosis, I learned a TON about diets and supplementation. I think it's important to get nutrition from food. I follow a moderately paleo/primal diet. I mainly avoid grains and focus on quality meat and veggies. Veggies and meat are super easy to prepare, so it works for me. Eventually, I want to get a nutritional coach who can look at my lab tests and determine the best style of eating for me. Playing with diet is overwhelming and can be a chore, so it's important to have someone to help you figure out what works best for you! I also have been incorporating the notion that my disease is not the end of the world, and rather than resent my disease, I embrace it. By doing this, I look at it like a learning opportunity. There are so many things you can learn by having a chronic illness that "normal people" don't get to learn. Spoonies are unique and strong individuals with beautiful stories to tell.
What are the biggest challenges you have faced since your diagnosis?
My biggest challenge I've dealt with is facing my disease and taking control of my healthcare. I spent a lot of time ignoring my disease because I couldn't find the help I needed. Doctors brushed me off, wouldn't listen, or prescribed me meds that didn't work. I left it up to a doctor to tell me what to do, but that is a big mistake. At the end of the day they don't really care (that's the truth!) You can't expect anyone to care about your health but you. I have learned that you need to be the boss! Only you know what's best for YOU and if your doctor isn't listening - FIRE THEM!

What are your favorite tips and tricks for managing everyday tasks?
Right now I am on crutches so it's been a struggle to manage everyday! However, I have SO much to be thankful for! Every morning I journal about my feelings and then I also write down 2 or 3 things I am thankful for to remind myself I have a kick-ass life regardless of my situation.

How do you manage to keep facing forward every day?
See above!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
YOU ARE THE BOSS, GIRL! Doctors, Google, supplements, diets, etc. are not a magic bullet. Embrace your health challenge, develop a plan, set goals, and hire a health care team to help you live the best life you possibly can! It's not easy but NOBODY'S live is!

Do you have a blog you would like to share?
Bliss and Health is a space for sharing useful info and inspiration (and a whole lot of humor) in hopes to empower those with chronic illnesses to overcome their health challenges to live blissful lives.

Would you like to be featured on Facing Forward? If so, please send an email to  

No comments: