Time for another Pass the Mic. This week’s guest was the first other woman of color I met (via social media) with myasthenia gravis. She agreed to share her story with us. Everyone let’s welcome Artheena!
What’s your name and where are you from?
Artheena Regalado, 31, Los Angeles, Ca
How old were you when you were diagnosed? What events led up to the diagnosis?
Junior year of high (2006) I was sitting at the computer and the left side of my face went completely paralyzed. From there I had migraines always and went through all sorts of tests, blood work, spinal taps, and was hospitalized 2 or 3 times over the course of 7 years. I was never diagnosed.
In 2014 I had just arrived to work and noticed that my vision was failing at a distance, minutes later up close and before I knew I was blind at work. My manager at the time drove me to ER where I was admitted and hospitalized for 3 days.
All this time I my vision never returned. My doctor happened to be the only black neurologist in Northern California where I was living and was able to diagnose me and send me home. I was 25 I believe and nursing my 6 month old daughter.
What has your treatment plan been? Which medications have you had the most success with?
I honestly had no success with medication. It seemed the side effects where mimicking the systems of MG and never took the meds long enough to record progress worth mentioning.
Are you in remission? If so how long? Great question! How would I know this?
Typical with any chronic condition my symptoms come and go but have been significantly since my thymectomy and learning how to identify and manage my specific triggers.
Besides the symptoms, what’s the most difficult part of having MG for you?
The unpredictability of knowing how your body is going to react and respond each day. It gets discouraging having to wake and not be capable for doing the things you set your mind to. Finding balance with this and also having compassion for myself is hard.
What’s the biggest impact MG has had on your life? Have you had to make any changes to your everyday life?
Having a thymectomy via sternotomy changed my whole perspective of life. I thought I was going to die. And recovery from that procedure catapulted some of the lowest moments of my life. It’s been two years and I’m still recovering physically can my body hasn’t returned to its normal functions. Relearning to use the body you’ve had for so long is tough!
Who or what has helped you the most in coping with your diagnosis?
My partner offers me a lot of support. They know how to support me when my body needs help without making me feel incompetent. I also really appreciate how they remind me to be gentle with myself with I’m weak or having episode and promote me resting often.
Alternative healing methods like tantra, meditation, herbs, and changing my diet have made a huge impact on my health also.
What goals have you been able to accomplish in spite of your MG? What’s next for you?
It’s been 5 years since I was diagnosed and 2 years since surgery. I’m most impressed that after being homeless and on disability for a year, I have also maintained a full time job and incorporate motherhood into my life in a way that doesn’t aggravate my condition .
Most recently though, I’m so proud of the progress with have made working out 3/day over the last two weeks.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed with MG?
Track your symptoms and how you feel!
Besides physically what other effects has your diagnosis had on you (mentally, emotionally, spiritually, financially, etc)? How have your worked through these issues?
Getting sick really was a wake up call from God. Every aspect of my life was taken aback. But the connection to my body, my mental clarity, and spiritual awareness also bloomed from this too. There were just some lessons I probably wouldn’t have grasped in such depth otherwise, ya know.
Any other comments or words of wisdom you want to share?
Listen to your bodies. Identify what your normal so that if your body tires to communicate something is wrong, you will be able to receive the message!
If you’d like to share your story, please reach out. You don’t have to have MG. It can be any chronic illness and you don’t have to be the patient. You can be a caregiver or a loved one. We all have stories to tell.