In the last issue of Access Press, I talked about the RSI I got while working, and how I was forced to stop my full-time work. Here, I continue with the story, telling of how I tried to apply for Social Security benefits as well as the other measures I took to cope with my disability.
Note: The majority of this story was written with voice activation software.
One of my options was to apply for Social Security benefits, but I wanted to work and couldn’t visualize “living off the system” (as I thought of it then), despite my disability. It was a combination of anger, pride and defiance against all I’d been through that persuaded me to go into business as a freelance writer and editor. The process began with the Minnesota Workforce Center, which opened a case for me and helped me figure things out. My case manager, to whom I will be forever grateful, helped me see the possibilities of working for myself. When I applied at the Center in 1998, I was able to get half of my home office equipment, software and furniture paid for by the state, which classified me as having a disability. My case manager convinced me that I could do my job with voice activated software, and the state paid for a trainer to teach me how to use it.
It took almost a year for me to learn how to use voice software. After more than 10 years of using a keyboard, it was a challenge not to type as usual—and the software had to be trained to understand the inflections of my voice. Although the voice software solved a lot of my problems, I was again having pain. After three years of working part-time for myself, I wondered if any new treatments had been developed for DeQuervain’s. If not, I also wondered if I would respond better to conventional treatments since I had stopped working full-time.
This time I went to a physiatrist (a doctor who specializes in rehabilitation), who again diagnosed me with DeQuervain’s and prescribed anti-inflammatories and physical therapy (PT). So I was back to driving (another activity that caused me pain) to PT once or twice a week, taking medications, splinting and having iontophoresis therapy (anti-inflammatories are delivered directly to the inflamed areas through a slight electrical impulse delivered through a patch).
All of these therapies offered temporary relief at best, and I finally resigned myself to trying to seek Social Security benefits. I was denied (twice), because Social Security doesn’t view RSIs as disabling. That was when I decided to see a personal injury attorney who had been recommended to me. I had nothing to lose since my attorney didn’t get paid unless we won the case, which was classified as workers’ compensation. The suit was for benefits I should have been paid after my case had been prematurely closed, as workers’ compensation determined that my symptoms had “resolved” because I’d stopped going to my first doctor.
By this time, the physiatrist had recommended that I consider surgery—and I hadn’t known that surgery was even an option. Upon learning it was, I was filled with resentment and anger—I had struggled five years with a disorder that could have been corrected. But as my doctor pointed out, surgery can’t be performed on an RSI until the condition has calmed down—and most doctors won’t perform surgery until all conservative treatments have been tried. The other point he made was that sometimes surgery is successful; other times, it isn’t.
I was willing to take the risk and began the process of finding a surgeon. One of the first surgeons I went to suggested that everything was in my head! Thinking back, all I can determine was that I was having a good day, causing the doctor to find nothing wrong. But his treatment was unforgivable—he hadn’t listened to me at all. I was made to feel like a hysterical woman, with nothing better to do than complain. This doctor admitted I was in pain, but said he thought it was all psychological—or that he just didn’t know its origin and I shouldn’t limit any of my activities because of it. As I later learned from others with RSIs, this isn’t uncommon. It filled me with rage. What if I had listened to this doctor and caused more damage? My guess was that he had never experienced an RSI himself—I wondered what his reaction would have been if he had spent just one day with the pain of an RSI. People with disorders that the medical community still doesn’t know much about are treated with disdain and condescension.
The next surgeon I went to reconfirmed my diagnosis of DeQuervain’s and told me that since nothing else had worked for me, I was a good candidate for surgery. His diagnosis lifted my spirits and gave me hope that I still had some options left. Sticking to my belief in second opinions (I’d completely discounted the opinion of the doctor who told me I’d imagined the whole thing), I went to another surgeon, who also believed surgery could help.
Both surgeons, however, insisted I receive a cortisone injection in my worst wrist just to “prove” that I had DeQuervain’s. The theory: If a patient receives any relief from the injection, they most likely have the condition. An extremely long needle was inserted into my right wrist, held in the aggravated area and wiggled around for at least a minute. The site of the injection hurt for several days, but I did receive some fleeting relief from it. This, and a series of tests to determine the degree of motion in my hands and wrists, confirmed my diagnosis.
Last year, I had surgeries on both wrists. After the initial healing time of three to six months, this took care of about 80 percent of the symptoms . (My doctor pointed out it could take a year or more to heal completely, since I’d been injured for five years). I also went through a third round of PT, which initially helped, but later seemed to aggravate my symptoms. Now I can finally lift a gallon of milk, drive my car and clean my house (most of the time). What I still can’t do (and might never be able to do) is type for extended periods of time or overdo lifting. I also wonder how this will play out if I ever have a child, as many women don’t even get an RSI until they become first-time mothers.
The process of filing a lawsuit and doing what it took to win the case was another painful process, but by that time I realized that I had become a victim of a system stacked against people just trying to make their lives work. One thing working against me in the case was the people who had helped create the stereotype of “sue-happy” individuals. But I set to work doing what my attorney told me to do: allowing my arms to be examined by the opposing council’s doctor, getting all five years of my medical records and history together, getting the medical treatment I needed and its accompanying records, and collecting all the applications for employment I’d submitted during the first few years of my self-employment—when I hoped some employer might accommodate me with the equipment and software I needed.
We were unable to settle the case. The day of the trial, over a year later, was one of the most stressful days of my life. I had to recount all the events of the past five years, dates included, and respond to the opposing council’s allegations, some of which seemed extremely unfair. But I was as honest as I could manage; I told the judge what I’d been through, then hoped for the best. I knew my chances were only about 50-50, because judges who award too many injury lawsuits might not get re-elected.
I did a lot of praying the week after the hearing and, miracle of miracles, we won! I won’t be able to retire on what I won, but at least I know I did everything I could to take care of myself—physically, psychologically and financially. I still have a long way to go in the healing process. I know there are alternative healing methods that may or may not work. I know I need to be more aware of my body, take better care of it and make sure it gets the rest it needs. I know that I may or may not heal completely from the surgery. I know that if I am going to keep writing and editing, I need to become more proficient at using voice software technology. And I know that the most important thing is that I never give up on myself.
Amy Farrar can be reached at 952-472-6874 or firstname.lastname@example.org. She is thinking of starting a support group for RSI sufferers in the Twin Cities/Western Metro area and would like to hear from any others who think this is a good idea.
She is also currently working on a book about RSIs and would like to include stories from others in her book. If you have an RSI and would like to include your story in Amy’s book, feel free to contact her.