The Change of a Lifetime. A woman's story about having Multiple Sclerosis.
Having MS doesn't stop me from going places
On an undisclosed beach near Yachats, Oregon
The Change of a Lifetime
Why getting MS was one of best things that happened to me.
I worked in service to people with disabilities for thirty-five years and then ironically became disabled myself when I was diagnosed with Multiple Sclerosis. I used my knowledge of the disability field to help navigate myself through health systems, social security, and durable medical equipment to get the equipment I needed at home. All the decades I worked in the field gave me a great advantage over people who find themselves suddenly disabled.
I got my social security disability on the first try, which is rare. Some people have to apply many times before getting SSDI. So if your neurologist thinks you would qualify have them write a letter to social security. Having a good neurologist and a good primary doctor is critical to help you understand your symptoms and what to expect. Having MS is not a death sentence and every one with MS has a different path.
With my disability I mostly use canes and walkers and a manual wheelchair when I travel on the ride source bus. I have to limit my up time sitting as I have chronic back pain. Having a specific Roho air cushion under me helps take weight off my triggering back pain. My right leg is partially paralyzed but I can walk with added supports. I also have problems with heat intolerance and use a cooling vest if I am outside when it's over 75 degrees. People with MS don't process heat the same way other people do. If i get too warm for too long a time I can get vertigo.
The worst part of my MS is the fatigue, I know everyone says they get tired but this is exhaustion. So I have to limit my activities. It's like I have a bucket full of water that is my days worth of activity. As the day goes on I dole out a ladle full of water. As the day goes one i have to make sure I don't run out at the end of the day. I also need to sleep 8-10 hours a night. Being tired all day can get me down, but if I watch my activity level I can make it through the day.
.As I age I will probably need home care, (even if I didn't have MS). I could possibly need help with cooking, cleaning, and self care. Since I only have Medicare Advantage and I don't have Medicaid, it would have to be purchased by me through my only option, the “Oregon Project Independence” They would send me a helper a caregiver to keep me independent and living in my own home.. OPI this home support would be available for free or I would pay a portion. This type of home care is relatively inexpensive, compared to the nursing or assisted living costs, and being one of the 10,000 baby boomers who are retiring every day, home care will save our government a lot of money.
Fantastic book 'Lean on Me" by Nancy Davis helped me tremendously
First thing you do is go buy the book "Lean on Me" by Nancy Davis. It helped me understand all about MS and how to prepare yourself for what ever is to come.
The author, founder of the Center Without Walls (a medical research foundation), has written an inspirational book for anyone with multiple sclerosis (MS). When she was a mother of three small children, she was diagnosed with MS at the age of 33. Her neurologist told her to go home and "go to bed... forever." Determined to have an active life, Davis developed a program to live as fully as possible. First she ditched a troubled marriage and surrounded herself only with people who would support her emotionally. She learned as much as she could about MS, working her way through the maze of medical information and misinformation to find which physicians and treatments would be the most help. In order to remain positive, avoid stress and commit to a healthy diet, she explored alternative approaches (among others, Davis has found homeopathy, acupuncture and osteopathy to be useful for her condition). Davis provides readers with an informed overview of how to negotiate the health-care system as well as Web resources. Today, remarried with two more children, the author, an MS activist, has devised a thoughtful plan for dealing with a devastating illness that should motivate others.
The Eve Chronicles" a book about a remarkable woman. If i must say so myself.
I am living with MS and loving life.
Here's the best part!!!
And here comes the good part. One day I started cleaving out one of my closets and found the box with all my old journals from the early eighties. As I read one of them I thought to myself “this could make a good story, and it’s funny too". So I wrote and published three fictionalized memoirs available n E book called “From the Waters of Coyote Springs”, “Felix and Eve” and “The Arrangement”.by Diane DeVillers aka girlpower.
All three books are now available in the paperback book called “The Eve Chronicles” which tells the tale of a young woman who moves across the United States to Oregon and begins working as a forester in the remote Wallowa Mountains of eastern Oregon. "From the Waters of Coyote Springs"shows a young Eve camping alongside a group of mismatched foresters of mainly men who tease her relentlessly. Eve soon gets the nickname of "Queen of the Comeback."
Eve continues to Gold Beach Oregon in "Felix and Eve" where she becomes an elderly man's live in caregiver. They come from very different generations. He is set in his ways and she is a go with the flow kind of person. He eventually opens up to her during their nightly card games and tells her about the good ole days when he worked for Al Capone the notorious gangster in Chicago during Prohibition.
Eve now a retired baby boomer buys a house in Eugene Oregon. She owns a house on Moon Mountain. Vinnie an old friend lives in a yurt in her back yard. Every year she gets a letter with a skeleton key in it and she heads to Catalina Island to spend time with a former lover. Vinnie stays behind and is caretaker to her flower and vegetable gardens. Vinnie is in love with Eve but he remains silent.
I never would have found the time to write these books unless I would have gotten MS and had the chance to retire early.
I have become an advocate for people with disabilities and post articles that ask for continued support for programs and legislation that will help people with all kinds of disabilities. I read all the information that The Arc, MS Society, and MS World sites have to offer me. They are my “go to” organizations that provide me with legislation alerts, that I send off to my Senators and Representatives in Salem and Washington DC. I post articles on several blogs then, every now and then; post about my book, hoping my followers on my blogs will buy my book.
I now have the time to do the advocacy I always dreamed of doing, as I was too busy working in the disability field. For twenty-years I was an outreach worker for disabled adults living in their own apartments. My job taught me the skills that I would one day need for when I was disabled myself. . I am able to navigate through the systems like social security and health care systems, because I did it for so long with my clients. They taught me how to be a survivor and how to lean on others when I needed to, and most important, how to ask for help.
I would say it was the change of a lifetime.
Thanks for letting me share my story.