Friday, October 21, 2016

Facing Forward: Joan

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: Joan
Location: Philadelphia, PA
Diagnoses: Sjogren’s Syndrome, Celiac Disease, Gastroparesis, POTS/Dysautnomia
Age at Diagnosis: 20, 18, 18, and 19 respectively, but all my symptoms started at age 10

How are you currently treating your condition?
I am currently on a lot of medications, the big one being Imuran/Azathroprine to treat Sjogren’s as it is the underlying cause of all my other issues. I am then on a bunch of other meds and supplements for different conditions and symptoms. I also just started doing botox treatments for gastroparesis. I have a very strict gluten free diet and try to eat low fiber and low fat. I heavily rely on tube feeds and daily IV fluids as well.
What are the biggest challenges you have faced since your diagnosis?
I have trouble finding the balance between keeping up with other college students around me while not overdoing it and wearing myself out. I just want to be like everyone else and have as normal of a life as possible, and I do succeed in many ways, but there are parts of my life that will never be totally normal. Accepting that is one of the biggest challenges I have faced. Many people may think is sad that I have accept the fact I probably won’t get better or every be totally healthy but I think it is what helps me live every day to the fullest and not waiting to achieve my goals in life till when I am healthy.

What are your favorite tips and tricks for managing everyday tasks?
I try to prioritize and set aside a day a week to do chores that I don’t have energy to do after a day of classes and work. Every week in the side of my planner is a to do list and I can usually manage a couple tasks a day so I decide on what is most important. On the weekends I try to cook but during the semester I heavily rely on frozen meals for when I am well enough to eat orally, the microwave is my best friend on low energy days.

How do you manage to keep facing forward every day?
I always try to keep in mind all the good things I have in life. I have amazing friends and family. I love my job teaching Hebrew School, and all my coworkers and boss are very supportive of me. Last time I was in the hospital all my students made cards and a coworker/friend brought them to me. It’s hard to feel anything but happy when surrounded by 25 cards made for you by 1st graders. I also try to keep the goal of finishing my program at school in mind so I can be teaching full time.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
My journey to diagnosis was so twisted that I am technically only diagnosed 3 months ago even though I have been chronically ill for a decade, so I will go back to the day I went to a new doctor for a second opinion on my knee pain and found out I would need two hip surgeries. I would tell my 16 year old self that she is stronger than she knows but it will get harder and that’s okay. She will be so much better off one day and she will still make her dreams happen. I would let her know she has only seen the beginning of the battle but she should listen to her body even when the doctors disagree with her but eventually she will have an amazing team of doctors as well as an amazing support network.

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