My name is Donna Zevnik-Sawatzky And, I have arachnoiditis. I have been afflicted with this 'orphan' disease for many years. But, was not officially diagnosed until 1991. I discovered my diagnosis by accident. I sent for all my medical records since I was applying for Social Security Disability. In these records was a short letter from one specialist to another. In this letter it stated I had arachnoiditis. However, I was never told by this specialist I had arachnoiditis, therefore, he never explained what it was. Thus, started my search.
I spent many, many hours; days; months; searching for information of what seemed to be an obscure disease/disorder I found little if any information in books or at the library. Finally, I turned to the internet. Again. I spent hours and hours searching. But, I finally had my answer. It was one I was not prepared to know. I certainly was ill prepared to discover I faced a life filled with chronic pain, intensifying with time. Or, that my disability and inability to function would also, with time, increase. And, that narcotics of one type or another seemed to be the only answer for the pain. With increasing tolerance for these drugs, they would eventually loose their effectiveness. It seemed a bleak future existence.
I feel I developed arachnoiditis much the way many others have; myelograms and spinal surgeries. Not to mention the epidurals. I have had four myelograms; two with the old oil based dye and two with the newer water based dyes. I have had two lumbar laminectomies for ruptured disks. And, I have lost count of the number of epidurals.
I have a spinal cord stimulator which is a minimum of help with the pain, but it does dull it some. I have also had an intrathecal morphine pump. I had it for almost four years. However, I had many problems which I feel stemmed from the pump and its morphine. I don't know if others have experienced similar problems or not. When my pump needed to be reloaded, if it wasn't done at least 10 days prior to alarming, I would become very ill. The symptoms were the same as withdrawal; nausea, vomiting, weakness, sweating, blood pressure increase. And, if these symptoms were not treated I would have seizures. These problems caused twelve or thirteen hospitalizations in almost four years. It was impossible to convince the physician responsible for my pump that. it was the problem.
I no longer have my pump. It was removed after a surgical procedure to reseat it caused a severe abdominal infection. When they finally turned off the pump prior to its removal the same symptoms and illness reoccurred. This time the doctor said it was withdrawal. You see he turned off my pump but gave me no oral medication to compensate for the morphine.
Now, due to the 14mg per day of intrathecal morphine I received via the pump. I am physically addicted to the morphine and must take it orally or I become ill again. I have managed to greatly reduce the amount necessary however. But, this is also something the doctor neglected to tell me; intrathecal morphine can and does, in some cases, cause physical addiction to the drug. I am hoping I can continue to lower my dosage until I no longer need the medication. It will be a long, slow process. But, I will do it!
After I finally discovered what arachnoiditis was, also came the idea I surely was not alone. There must be others like me. Thus began one of the most rewarding periods in my life. Since I had become familiar with the internet during my search, I decided to post a message at a website which offered a bulletin board for just that purpose; to locate others in similar situations. What began as a lonely search quickly grew to one new friend, then another, with the promise of even more to come.
With the urging of my two new friends, I decided to build a homepage website devoted to the information I had gathered about arachnoiditis I felt this would help others avoid the frustrating search I had encountered. I gathered even more information and posted it. Within a few months there were twenty or thirty new friends, sufferers. For over a year, I used my personal address book to send bulk emails and forward others to everyone who had contacted me via the website. Thus, we became the "Circle of Friends With Arachnoiditis", or COFWA for short.
COFWA grew by leaps and bounds. I developed a Mission Statement. It was very simple; Support, Education and Advocacy!. In two short years COFWA grew from myself, then two, then three, then over three hundred sufferers. At this point, I recruited others to assist me in making my dream and vision a reality. Membership, email facilities, snail mail pen pals, information packets, physician referrals, brochures, decals, you name it, we added it!
With the exception of a few problems, COFWA ran very smoothly with the help of a few others. But, then, I was forced out of COFWA. However, I still retain some wonderful, valuable friends I made in COFWA. For that, I am extremely thankful.
If you encounter a COFWA today it in no way, resembles the Îoriginalâ founded in 1996. The mission has become very blurred and the ethics cloudy. Remember it IS NOT what it was meant to be. It is merely a faint shadow of what was once a prime example of co-operation, caring, sharing and friendship.
Today, I continue volunteer work for a civil rights non-profit organization. I also sew, paint, do crafts and spend wonderful time with my four grandsons. I am still able to cook, do light housework, limited shopping (due to arthritis in my knees and hips) and enjoy old movies. Although my life is not as full as it was prior to 1989, it is still a joy and delight. I have a wonderful new doctor who understands chronic pain and isn't afraid to prescribe the medications I need to remain at a comfortable level. My pain is at a very tolerable level. I count myself very lucky. There are so many other sufferers who are not as blessed as I am.
If I could give others any advice it would be: EDUCATE YOURSELF!!!! Information and education will light your path to whatever level of recovery you are capable of obtaining.
Once you educate yourself, educate others .....including your physicians. Arm yourself with the tools to aid in your treatment. Become a very active member in that treatment. If your doctor won't listen, thinks he/she know it all, find another doctor. My search was long and hard ....but it can be done. Persevere, persevere, persevere and be tenacious!!!!'
Don't give up. Know your limits, pace yourself. Don't overdo because you are afraid of what your family or others might think. Think of yourself first for a change. YOU are all you have and the body you have is the only one you receive. Take care of yourself first, then you can take care of others.
If what I do, have done, or say assists even one other person in this world then my existence in this world is justified. We are only what we are able to give others. But, you cannot love or give to others until you have done the same for yourself.
May your life be all it can be. Believe in yourself. Accomplish what you are able to accomplish and do not berate yourself for what you cannot do. Dwell on the positive aspects of your life and ignore the negatives. This is survival at its best! And, we ARE Survivors. We must be so we can educate and assist others in our same circumstances. We are the only help some others ever receive. So, dedicate yourself to that purpose.
With warmest thoughts,
Founder and former Exec. Director, COFWA
Because of Donna's volunteer work for not only arachnoiditis sufferers by her founding of COFWA, but also other non- profit organizations for civil rights and child advocacy she has been listed in the following:
Notable American Women of 2001