To understand my story you'll need to understand the daily obstacle course a person with IBM faces due to weak legs, poor grip function and swallowing problems. Simple things that everybody takes for granted have turned into challenges that need to be conquered, modified or simply given up as losses.
THE THINGS I MISS:
Walks in the woods or at the beach. Swimming in the ocean. Running up a flight of stairs...navigating steps, stairs or a curb without seeing Mt. Everest! Dancing. Going out in windy or stormy weather. Holding an umbrella. Going for a brisk walk. Bicycling. Going on trips or visiting friends without having to think about accessibility of location and bathroom facilities. Sitting on a chair or sofa without having to worry how and if I can get up from it. Taking a luxurious bath instead of a shower. Wearing nice fitting pants versus the loose fitting pull ups. Pulling zippers. Putting on jewelry or closing buttons without needing help. Wearing shoes with heels or sexy sandals. Wearing pantyhose and pretty dresses. Not to need rubber gloves to put on my compression knee highs. Hooking or unhooking your bra on first try, not after the seventh or eighth time. To be dressed and showered in 20 minutes. Regular gardening, raking, or simply pulling up a weed. Going up the backyard hill to sit on "my bench". Taking photos with my Minolta camera (too much weight now). Doing crafts and sewing, threading a needle, sewing on a button...using my sewing machine. Tying a knot or shoe lace. Writing with a regular size pen and handwriting a long letter. Carrying groceries. Peeling potatoes or cutting an apple freehand. Opening a pullout drawer without having to look for a hook type tool first. Taking a casserole out of the oven. Pouring from a gallon bottle with one hand. Squeezing out a sponge or washcloth. Massaging my head with the tips of my fingers. Vacuum cleaning and sweeping. Walking while looking at the stars. Playing the recorder or guitar. Singing and whistling. Enjoying a conversation while eating. Eating without the fear of choking. Taking a pill without the need to crush it. Managing without assistive devices/tools, reachers and magnifying glasses in every room. Not needing booster cushions. Opening my car door without having to think about how to align my body to be able to do it without loosing my balance. Just simply moving about without having to think about how to do it safely.
So many simple things I can no longer do or have to work twice or three times as hard to be still doing them. My energy expense account gets way overdrawn on a daily basis, and I have had to learn to slow down, prioritize, pace myself. I need to listen and respect my body signals and yet not be trapped by feelings of guilt about them.
My first diagnosis was variant Lupus in 1986. After a muscle biopsy in Quincy City Hospital in 1989 I was given a new diagnosis of SLE/Myositis. In those days I was not aware that there are different forms of Myositis, each with their own distinctive features and approach to treatment. My diagnosis then was SLE/Myositis and I was given the usual approach of treatment with Prednisone. Methotrexate was added to that later. These are aggressive medications with ugly side effects when you take them longterm. I have no fond memories of those nine years! Years later, I found out that if the patient does not respond to this treatment for Polymyositis after 6 months to a year then retesting with a biopsy is usually recommended to exclude IBM.
I began having my first unexplained falls in 1994 thinking I was just clumsy and out of shape. I had a fight with my PCP who did not think physical therapy was in order in my case. So in 1996 I changed doctors and started physical therapy, followed by aqua therapy in 1997. Absence of knee reflexes was noted then. I remember vividly coming home with bruised knee caps from both my doctor and an intern trying very hard to elicit a reflex by knocking on my knees with a little hammer! An EMG in Milton Hospital was then ordered and a Neurologist gave me the diagnosis of Peripheral Neuropathy with possible link to the SLE diagnosis. A repeat EMG showed abnormal muscle reactions.
A CORRECT DIAGNOSIS...AND THEN SOME
Then I got desperate for answers and switched to a Neurologist in Massachusetts General Hospital. After a thorough exam and listening to my story he ordered another muscle biopsy. This was taken in 1998 and confirmed that I had IBM (Inclusion Body Myositis) a form of Myositis that is known not to respond to the immunosuppressive treatments that I had been on for the last nine years! With the changed diagnosis I was given IVIG infusions for the next 2 1/2 years. After that, due to a change in insurance carrier, further coverage of this expensive treatment was denied. These infusions did not bring the disease to remission but in retrospect I do think they slowed down the progression of it for me. Also in December of 1998, I experienced the first symptoms of Sjogren's Syndrome: gritty eyes and dry mouth. It is not unusual to have SLE or Sjogren's Syndrome along with a Myositis disease, but on the other hand having Myositis does not necessarily mean that you will also get these other diseases. I guess it is just my luck!
LIVING WITH IBM
When it became difficult for me to rise up from a chair (1997), Bill took the initiative and had our two toilets replaced with handicapped height ones (4 inches can make a huge difference!) Grab bars for the bathtub followed soon after. In 2001 when it was clear that I could no longer manage steps or stairs we had two stair lifts installed so that getting to the upstairs and to the basement was no longer an ordeal for me.
On the short staircase from the deck to the driveway we used wooden blocks to create "half-steps" for me. Then I found the portable EZ-step on the internet which has been so important for me and is always in my car. With its use each step height is cut down in half. As long as there is a railing I can still visit friends homes, that otherwise would not be accessible for me. In the last six months it has become more apparent that even with these tricks, time is slowly running out with regards to my mobility.
About 8 years ago I started to use a cane. (Lotte, my mom, used to call it her third leg) For a while within the house I felt safe enough to go without a cane. Grabbing at nearby furniture to hold on to for balance seemed enough, but that time passed. Then I needed both a cane and a quad cane to manage to go up the slope in our backyard. Now, in the last year, walkers and the rollator (4 wheel walker) have finally become the things I could not be without. Lotte's rollator (which I brought from Germany) has become indispensable in the house for me since it has the bench with a tray that enables me to carry things from one room of the house to the other. I also have a wheelchair for the times that involve too much walking. Bill has become my champion for wheeling me around. A scooter looms in the future. What I lack in physical mobility I have to constantly make up with mental gymnastics, every move I make requires me to be mentally focused on it to prevent a dreaded fall. (of which I have had too many, and which have contributed to the reasons for my shoulder and knee surgeries)
Our latest major modification has been to have the deck raised to the indoor level of our home and to have an outdoor platform lift installed. This project was a few years in the planning stage and I probably was not ready for it sooner. In a way, just as well, since using walkers all the time now I came to the realization that a ramp was too hazardous for my weakened legs. With the loss of quadriceps muscles the tiniest slope will put tremendous strain on your legs and locked knees and makes the risk of falling too great. So we decided while I was still somewhat ambulatory to go with the lift instead of a ramp. To finance all this we were fortunate to obtain a loan through a special program in Massachusetts that helps folks with disabilities. It took a lot of forms, red tape, etc. but it was all worth it. The lift has been great and certainly helps to conserve some of my precious energy.
When you have to fight your daily battles with IBM (Inclusion Body Myositis) there is no chance of a furlough, leave or truce. It is ongoing, relentless and progressive. It is truly mentally and physically exhausting. You absolutely depend on having a good support system through family and friends. They have to share this disease with you whether you like it or not. It is a learning process for them too and a harsh reality. I have learned that it is O.K. to have down times. I created a RAINY DAY folder where I save clippings, quotes and relevant poetry. Such a folder can be of help during those downtimes when you have to try your best to control your thoughts and avoid anything that may have a negative influence. To see some that helped me, click through.
Well, the above was written in March 2007 and since then, response to this site has been fantastic. Annual updates can be found at the following links:
2008 ANNUAL UPDATE
2009 ANNUAL UPDATE
2010 ANNUAL UPDATE
2011 ANNUAL UPDATE
2012 ANNUAL UPDATE
2013 ANNUAL UPDATE
or you can
RETURN TO MYO-MUSINGS HOMEPAGE
© 2007-2013: Dagmar Slaven. All rights reserved.