Friday, December 9, 2016

Facing Forward: Kali

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:  Kali
Location: Westerville, Ohio
Diagnoses:  Ehlers Danlos Syndrome hypermobility type, chronic migraines, muscle spasms, Fibromyalgia, Meniere’s Disease, Asthma, Chemical Sensitivity, IBS, Heart Murmur, POTS, Psoriasis
Age at Diagnosis:  The Chronic Migraines, Meniere’s disease, Asthma, Chemical Sensitivity, EDS and Heart Murmur I have had since I was born. As I’ve gotten older and unfortunately sicker I started getting the muscle spasms, Fibro, IBS and Psoriasis. The muscle spasms and Fibro I started getting when I was about 16 or so. I’ve had a few nasty falls and that probably has contributed to my Fibro and muscle spasms. But the EDS is probably also a very large contributing factor to my pain. The IBS, Psoriasis and POTS are more recent diagnoses though. The POTS diagnosis I’ve only had for about a year and a half. The IBS and Psoriasis I’ve only been officially diagnosed with for a couple months.

How are you currently treating your condition?
For all of my illnesses I’ve chosen to go for the pharmaceutical approach. Though for a very long time I tried to cope with my illnesses by trying to ignore them. After awhile I was no longer able to ignore my illnesses I started trying OTC meds and vitamins, which do help somewhat. But after being sick for so long I finally started seeing the appropriate physicians to receive treatment. That has resulted in me taking a grocery list worth of medications. I have to make a spreadsheet to remember when I can pick up which medication. 

What are the biggest challenges you have faced since your diagnosis?
My number one challenge that I face with my diagnoses is actually being believed that I’m 21 and I take as many meds as an eighty year old. And being believed that I do have as many chronic illnesses as I do, that I’m not falsifying anything. Another big challenge is what a lot of us face, using a wheelchair in public places such as the mall. 

What are your favorite tips and tricks for managing everyday tasks?
 I spend probably about 85% of my time in a classroom because I’m in nursing school, and I’ve learned to basically use the wheely chairs in the classrooms as a way to get around. And I always recommend that people have a filtering water bottle with them when they go out. It’s good for keeping your water intake high and you don’t have to pay for water. 
How do you manage to keep facing forward every day?
I keep moving forward because I have to, I’m in nursing school and I will get my degree if it kills me. And just because I’m sick I don’t want to give up my dream. I feel like I give a unique perspective to becoming a nurse, I’ve experienced the medical field from both sides. I’ve been a patient and I know how I want to be treated when I’m in a hospital. And I will be a nurse so I will be able to better relate to people and their struggles. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?

I would tell myself that being chronically ill isn’t the end of the world. That it will actually make me a better person. And give me opportunities to teach people about things that they might’ve never seen or heard of in their life. I would tell myself that I will become an advocate and a teacher.
Do you have a blog you would like to share?
This Spoonie Speaks

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