Friendy Friday: Grace Augustine talks about her journey with MS.
Grace Augustine is one of the many amazing women I've met on my authory journey. Recently she asked me to write a blog post for a group she's involved with, and I had a great time working on that. I knew I wanted to have her on the Rock 'n' Romance blog, but I decided rather than my usual silly interviews, I'd turn over the reigns to her so she could talk about her journey living with Multiple Sclerosis. My husband's beloved uncle struggled with MS and passed away from complications, so this is a cause that is near and dear to our hearts. I'm grateful that Grace is here today to enlighten us about the disease and how she's learned to find peace as a survivor.
Grace also writes fiction and I'd love for you to check out her books. Her links are listed below. And here is a link to the post I wrote for her blog.
It was a beautiful June summer evening, perfect for a water aerobics class. Everyone hopped out of the pool when class was over and bid their goodbyes. I struggled with the last step of the ladder. I called out for help, but no one was around to help me. I remember thinking how odd it was that I couldn’t feel my left leg, then shrugged and thought maybe it was because I’d been in the water too long. I crawled to the bench where I sat for a few minutes, willing the feeling to come back in my leg. It did, eventually, and I grabbed my clothes and headed cautiously to my car.
Something wasn’t right. My leg was tingling, and my foot was dragging. It was 8 pm and the hospital was 30 minutes away. I drove home and made a mental note to phone my physician in the morning.
This was how it began…my journey with Multiple Sclerosis…in June of 2003. I did phone the doctor and scheduled an appointment for later that day. After examining me, he referred me to a well-known neurologist in Cedar Rapids. That appointment was scheduled two weeks later.
I’m not quite sure why some physicians don’t take their oath seriously. This neurologist was terrible! Every time I tried to say something his hand would go up in front of my face and he’d be questioning me…Are you a doctor? Are you a nurse? If you aren’t, I suggest you just be quiet. Needless to say, I left his office in tears with no answers.
I sat in my car and cried then phoned my physician’s office. They heard how upset I was and put the doctor on the phone. He told me to get to their office immediately and he would handle things.
By handling things, I had no idea what that meant, but I did proceed to his office. He’d scheduled an appointment at Mayo Clinic for me. If you’ve not had the Mayo experience, it is unlike anything you’ve seen or been a part of.
The Mayo clinic campus is incredible, the physicians and staff courteous and kind. I was scheduled for intensive tests and doctor’s visits for three days…three days of blood work, three days of x-rays and MRI testing, three days of five physicians (from five countries) each examining me then coming together on the 3rd day with their conclusion… “You have primary progressive multiple sclerosis.”
I returned home in a haze. My boys were in college and my then husband felt the only thing I should do was sit on the couch. I went through six weeks of pure hell trying to get a handle on my emotions, trying to figure out what to do next, and spending most of my time crying because it felt like death.
One day something changed. One day I awakened with a different viewpoint. I began researching every piece that was ever written on the topic of Multiple Sclerosis, even down to the clinical stuff…the B-Cells, T-Cells, chromosomes, how they were affected, which ones were affected and why. I become a walking encyclopedia of information. But, that is how I gained control of this whole process. My body may attack itself, but I wasn’t going to allow it to take me down completely. I have “IT”, but “IT” certainly wasn’t going to have me.
The neurology department at the University of Iowa became my biggest ally. I decided that I couldn’t drive to Rochester, Minnesota every time there was a flare up. In the early years, there were many flares…many times of not being able to walk at all, of 5 day treatments of IV solumedrol (steroids), of week-long hospital stays, and in 2006 a three week hospital stay to learn how to walk again. I was fitted with an AFO, a brace that stabilized the foot drop so I wouldn’t fall. I learned to use forearm crutches when walking long distances, again to prevent falling.
As this disease progressed, it took energy from me, it took mobility, it took my ability to stand and work at a job I loved. I needed to re-invent my employment self. No longer could I work 40 hours a week as a floral designer. I cut that down to 20 hours so I could also have time to rest.
After ten years of people pointing at me and whispering behind their hands to those around them, I knew what it was like to be shunned because of a disability. That is when I decided to share my journey with others who have multiple sclerosis and other autoimmune disorders. That is when SO, YOU HAVE MS. NOW WHAT? was born.
To date, I am a 16 year warrior of this disease. I have had to find many new normals, and many new ways of doing the simplest of things. I sit when I prepare vegetables, I have learned that it is all right to stop or say no and rest when I need it. I am no longer working outside my home, but have become a full-time author and editor.
Multiple Sclerosis is not contagious, it is a person’s body attacking its own central nervous system. It is not muscular dystrophy—a disease that atrophies and destroys muscles. It is not fatal—people can die from the complications caused by the disease.
If you’d like to know more about Multiple Sclerosis and how you can be involved, I’d be more than happy to visit with you. You’re never alone. You can reach me through my
twitter @mallidalli
I hope you enjoyed this post from Grace!
As for my world of Rock 'n' Romance... I've got a bunch of announcements coming soon to share with you for events and new releases. I'll have two releases in June and another one for sure in October. Other than that... things are in the works. I'll keep you updated in the next newsletter-y thingie.
Stay Tuned for more Rock 'n' Romance...
