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.
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?
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.
Do you have a blog you would like to share?
Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.
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