I’m still trying to get my life back on track so I don’t have any fresh content for you guys but it’s coming. Thankfully, I reached out to another warrior who was willing to share her story. So we’re back with another Pass The Mic Interview. This time we have Tasha W who is giving us a peek into her Myasthenia Gravis (MG) journey. Check out her interview below.
What’s your name and where are you from?
Tasha W.; 33 years old; St. Louis, MO
How old were you when you were diagnosed? What events led up to the diagnosis?
I was diagnosed at age 6 in 1993. My mom noticed I was tired more than a child my age should be. She thought I was being lazy and got me checked out.
What has your treatment plan been? Which medications have you had the most success with?
Over the years, I took prednisone off and on; I’ve been on Mestinon all my life. I’ve tried IVIG but that wasn’t successful. I started developing uncontrollable migraines. I would have to sit in a dark room with sunglasses on that’s how bad they would get. I’ve even had to stop in the middle of treatment because a migraine hit me hard. So that was immediately removed as an option; I’ve had two rounds with plasmapheresis when I came out of remission and it helped me out a lot. It also jumped started my body when I started my Rituxan treatments.
Currently I am getting routine maintenance of Rituxan every 3 to 4 months and I absolutely love this plan. It has put me in a position that I take Mestinon on an as needed basis, have more energy in my days, and stepping down on prednisone.
Are you in remission? If so how long?
I am almost back in remission. I’m glad it isn’t taking long for me to get back to myself. I was in remission from 1993 to 2015. When it happened, I had no idea what was going on but I managed myself and kept on living my life. I just made the necessary adjustments.
Besides the symptoms, what’s the most difficult part of having MG for you?
I’d have to think about that because I don’t really have difficult things to come up. I’ve always done what I wanted, lived with no limits, and everything in between.
What’s the biggest impact MG has had on your life? Have you had to make any changes to your everyday life?
The biggest impact would be I continue to hit the world harder each day. I’m grateful that I have been able to live as I wanted to and not having to think or worry about MG. I didn’t have to make any changes whatsoever!
Who or what has helped you the most in coping with your diagnosis?
My mom has always been there. With everything the doctors told her about MG and what they deemed I wouldn’t be able to do she didn’t worry about that. She made sure my childhood was lived with no limits. She taught me how to push myself and go for what I wanted no matter what. My dad, God rest his soul, was there but didn’t know much of anything about MG. He was there when I woke up from my thymectomy and when I had my son. He admired how strong I have always been, and I continue to remember that about him. My son has been such a great help to me. Doctors told my mom that shouldn’t be something I went through when I got to my adult life. It was like everything they said no to, I did lol. My son is healthy, my pregnancy with him was flawless, and we kick it and enjoy each other. He’s 11 years old now and has learned about Myasthenia Gravis on his own. I appreciate him for being so helpful and understanding at his age. He
has an old soul lol. My family and friends have been wonderful and so supportive.
What goals have you been able to accomplish in spite of your MG? What’s next for you? Aspirations/Goals etc
I have accomplished so much over the years. I graduated high school and college, I have a license in massage therapy (I know crazy lol), I am currently back in college as a full-time student finishing my Bachelor’s Degree Program in Health Care Administration, I am a full-time parent, soccer mom, involved in my son’s school, I travel, and I currently went the Founder of an organization call My Walk with MG. I worked on this project since 2017 and went public March 2019. So far, it has been truly amazing! I have talked to people all over the world. Iceland, Australia, India, to name a few. It’s so interesting talking to them and seeing the difference in the health care system. My goal is to use my organization to educate
the world about Myasthenia Gravis.
Besides physically what other effects has your diagnosis had on you (mentally, emotionally, spiritually, financially, etc)? How have you worked through these issues?
Coming out of remission has done a lot for me. I took that time I was in the
hospital to reflect on my life. Now, I’ve reflected before but not in this way. I reconnected spiritually and that has made a world of difference for me. Mentally and emotionally I’ve always been good with because I lived my life every day. Financially who wouldn’t want that to increase lol. I have always been able to manage that and take care of my family. I write and have since I was a little girl. It was my therapy to deal with whatever was on my mind. As an adult, I still do but I also see a therapist. Sometimes talking through things makes a difference and help balance you out.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed with MG?
I don’t really remember much since I was so young. The advice I would give
someone newly diagnosed is “it’s ok to go through a grieving process with this. I do recommend seeing a therapist. Be mindful of the energy of others whether it’s in person or online. Everyone isn’t suitable to talk to. As much as you can, rest but never forget to LIVE! MG does not mean you have to stop doing the things you love to do. No one says you must! Take your time to wrap your head around the new addition to your life. We are all different when it comes to MG which is why we are Snowflakes. Whatever you want to do please do it! All we have to do is make adjustments, stock up on our meds, and live!! We only get one life so enjoy it.”
Any other comments or words of wisdom you want to share?
I can’t say this enough..please live your life. Create you a new daily plan and get to it! Never dismiss your feelings but also allow it to consume you. There is light in the dark tunnel.
Thanks so much again Tasha for sharing your journey with us. I personally haven’t met many people who had MG diagnosis since childhood so it was refreshing to hear her story. Above all I admire that she has managed to start up an entire non profit for MG. Like how freaking amazing is that?! If you’d like to connect with Tasha you can reach out to her via Facebook My Walk with MG, IG: @m_w_w_mg and Twitter: mw_w_mg, Don’t forget to check out My Walk with MG.
For those of you that are new to IWWB, Pass the Mic is a way to give other spoonie warriors a platform to share their chronic illness journeys with each other. Sharing helps us feel a little less alone in our battles. Wanna be featured? All you have to do click here.
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