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.
This month’s PTM warrior is the lovely Roteavia. Let’s see how her journey with Myasthenia Gravis has been.
Let’s start with some basics. What’s your name and where are you from?
Roteavia M. From Houston, TX but reside in Tyler, TX
How old were you when you were diagnosed Myasthenia Gravis? What events led up to the diagnosis?
I was 28 years old when I was diagnosed. Everything was good until around fall time. I had started becoming really fatigued and my eyes would just shut around 2pm everyday. A few weeks later I started speaking through my nose and having migraines. I went the the dr and of course they blamed it on stress.
In October I went back to the dr because when I would swallow it would come out of my nose. I actually thought is was funny until they said it could flow back into my lungs and cause pneumonia. But once again they gave me the basic diagnosis of anxiety and sent me on.
I went back to my hometown for my cousin’s bachelorette festivities. The day of the bridal shower is when things went all the wrong. I physically could not swallow the whole day.
I was getting on the road to go back home and my mom told me to stop by because she didn’t like the way I sound on the phone. I had started slurring my speech real bad, my eye was droopy and she thought I was having a stroke.
We went to the ER and they were going to write me off too but my mom advocated for me and demanded some tests. She called and had my husband drive down immediately (took him 2 hours to make a 4 ½ hour drive). I was admitted for about a week and was diagnosed with MG.
Little did I know, my life would never be the same.
What has your treatment plan been? Which medications have you had the most success with?
My treatment plans have changed quite a few times because after so long my body just does whatever. I’ve had IVIG, PLEX and rituxan. I’ve taken cellcept, imuran and mestinon. No steroids because I’m allergic. The best thing ever was the thymectomy.
Are you in remission? If so how long?
Yes, 3 years as of January.
Besides the symptoms, what’s the most difficult part of having Myasthenia Gravis for you?
The most difficult part was being stripped of everything I was passionate about and then watching my husband and children be so helpless.
What’s the biggest impact MG has had on your life? Have you had to make any changes to your everyday life?
MG has made me a very humble person. Its taught me how to really live, love myself and to love others. It has also taught how to stand up for myself and to choose my battles wisely.
I’ve learned how to take care of me and take it easy. I was always needing to be in control of everything but now its not a big deal.
Who or what has helped you the most in coping with your diagnosis?
My faith, family and my love for life.
What goals have you been able to accomplish in spite of your MG? What’s next for you?
I started back writing, teaching and coaching. I want to get into modeling like I did when I was a teen but not the local photoshoot/party promoter kind. I want to do actual projects with a meaning behind it.
Once I get my vocal cord procedure done I’ll start recording my poetry and a few songs with my husband for my own pleasure. I plan on taking my kids on real family vacations. I want them to see the world.
Think back to your diagnosis day. What advice would you give to yourself or someone newly diagnosed with MG?
I wouldn’t have let them convince me that I was stressed and that it was in my head.
Besides physically what other effects has your diagnosis had on you (mentally, emotionally, spiritually, financially, etc)? How have your worked through these issues?
Financially, It was difficult. My husband had a good job with decent insurance but the medications were still going to cost thousands of dollars a month even with manufacturers discounts.
I qualified for medicaid but they would only cover 3 medications per month. Because they were long term prescriptions none of the community programs would help me.
Mentally and emotionally, I felt like I was dying inside and some days I just felt numb.
Any other comments or words of wisdom you want to share?
Fellow snowflakes, don’t give up, fight for what you want and don’t let anyone make you feel like a burden.
Loved ones and caretakers, please be patient with us. We know it’s not easy and it’s just as frustrating for you. Please join a support group in your area or get connected with the MG Friends program.
If you’d like to connect more with Roteavia, you can link up with her on FB via her personal page or through the East Texas support group, via IG and Twitter and she too has a youtube channel and a blog. Or send you can send her an email and tell her Morgan sent you!
Roteavia and I are going Live Tonight 3/18 7:30p EST to dig a little deeper into her story and journey with Myasthenia Gravis. Join us if you can.