My Story
Secrets to Successful
Coping Skills
Quotes, Poetry and Stories
That Resonated
A Few Words
on Pain
Books That Helped
Me Grow

March 20, 2008

As of March 22, 2008 my web page will be a year old and I am rather pleased that so many folks all over the world have read about me and my journey with INCLUSION BODY MYOSITIS. It is so very important to get the word out about this rare disease. So far we had approximately 2054 visitors and I admit I get quite excited about that. I do hope that the majority of you found the information and links useful and perhaps some of you may have been helped to conquer hurdles in your own situations.

As it is with any chronic and progressive disease, especially with IBM, the chronicling of what has been going on in the last 12 months can be a downer and some patients with a more recent diagnosis may find it depressing to get a glance of what may lie ahead in the future for them. However, what I am talking about is my very own experience and may not apply to someone else.

Last January I started getting a series of Synvisc injections in both knees to help with loss of cartilage that made walking so very painful. It did help up to a point, but since I can now only walk by locking and hyper extending my knees these joints and ligaments are doing constant double and triple duty to make up for the loss of quadricep muscles. There is always stress, overuse and inflammation on my knees and occasional falls still do happen.

For a while I was still able to do my errands and shopping using my car but found it increasingly harder to collapse the rollator and put it into the trunk. I appreciated the availability of scooters at my local super market but had to look for shopping carts to get me from the parking lot to the store. Then came the point when I needed a cane to get from the driver’s side of my car to the trunk and had to be so super careful not to loose my balance when hoisting the rollator in or out of the car. The signs were there that I needed more help.

In May it came in the form of an ad on Craig’s List for a motorized wheelchair that was being offered in a town close by. It was a Pride Jet3 Ultra and I bought it on the spot. The price I paid for it was far below the amount our insurance would have had us pay out of pocket with a prescription from my doctor. Our insurance has a clause for a max of $750 per year for durable medical equipment (DME). Knowing what DME costs these days one has to laugh (or cry). Now I had a powerchair for use in my home, but we had no van to take it places.

My new Pride Jet3 Ultra
Me in my new wheelchair by the chairlift.

I count my blessings that I am living in the Greater Boston area with a transportation system (MBTA) that is helping folks with disabilities. I signed up for THE RIDE and now I have the ability to get picked up by one of their vans from my home. They bring me and my motorized wheelchair to the place of my choosing, usually to my water therapy at the local hospital or doctors appointments. Visits to shops, malls or friends homes are also possible. There is a modest charge of $2 each way which makes it a very reasonable $4 for a round trip.

In order to enjoy the outdoors more with my husband and/or family and friends I felt I also could use a scooter that would come apart and fit into the trunk of our car. I had signed up as a patient with the local chapter of the MDA, (Muscular Dystrophy Association) a while ago. IBM is one of the many diseases they cover. Being one of “Jerry’s Kids” and knowing about the MDA’s fabulous support program I was able to obtain a four wheel scooter that easily comes apart and reassembles in a minute. So now I also have the option to get to places, malls, parks etc. with my husband, sons or friends as long as they are willing and able to assemble the scooter for me. This model, a Pride Go-Go Elite Traveler Plus, is very stable and great for outdoors, on lawns and unpaved paths but its turning radius is much larger than the motorized wheelchair and makes moving about in tight surroundings more difficult. It would not work very well in my home and may not work in some public restrooms. That means that at times we also log along a foldable walker and often a portable raised toilet seat just in case. Any little trip needs to be preplanned and organized so that I don't have to encounter unpleasant surprises. At times frustration wants to take over but then I count my blessings that I am still able to do these things even if it means conquering potential obstacles around every corner.

My new scooter
Me in the scooter at a local park.

During the course of the year walking became more and more difficult and although I do try to still use my four wheel walker for a few steps within my home, simply walking combined with past injuries from falling have put such a tremendous stress on my knee joints that by now I have a bad case of tendonitis and sprained ligaments (right knee) that has pretty much immobilized me to the point that I am using the wheelchair all the time now. My efforts to cook meals are down to very basic and simple recipes, and I am grateful that my husband Bill appreciates whatever I may serve. Many times he has to take over and watching us two in the kitchen can be humorous since he is not used to taking directions. For cleaning my home I am lucky enough to have help come in twice a month, but a lot of things simply don’t get done anymore. They end up on lists to be done in the future (or possibly never). I have had to learn to differentiate between what is truly important and what simply does not matter. Case in point: some of my furniture shows “victory scars” from being scraped by the wheelchair. Is it more important to still get about in my home or stay frozen in a corner for fear of scraping the furniture?

In September of this year, I was pleased to find myself and my diagnosis featured in a newspaper article which can be found here: PATRIOT LEDGER ARTICLE - SEPTEMBER 21, 2007
The same article was reprinted in several other local papers and helped give some visibility to a disease that is still very much unknown to the average person.

Due to the ongoing muscle wasting in the arms, my handgrip has diminished further forcing the elbow joints and wrists to compensate. I use my thumbs a lot in a hook like fashion and as proof have developed callouses on the side of the thumb joint. Now with the most recent knee problems and trying very hard to keep the weight off the knees, yet unable to use crutches, I also have to deal with tendonitis of the right elbow.

I am trying very hard not to succumb to total frustration about this latest obstacle that has been thrown in my path. At any rate I try to be very, very patient and baby these injuries with icepacks and Advil. I've already had a Cortisone shot in the knee and may need one for the elbow and hope that in a few weeks I will get back to what I consider “normal” and resume my water therapy that I sorely miss. I can’t help thinking that I pay a high price for trying to remain independent for a while longer.

In July I had to undergo a minor operation (cystocele repair), and my docs were somewhat reluctant about the anesthesia needed given my swallowing problems. I am happy to report that I was given general anesthesia and had no problems from it. The operation was successful.

In December I was evaluated one more time with a modified video barium swallow test for my swallowing problems and consequently an endoscopy procedure was scheduled for January with the hope of stretching my esophagus one more time. Sadly this procedure had to be cut short. Even with the conscious sedation that I was given, my upper sphincter muscle tightened and closed up solid on the doctor and he did not want to risk injury by forcing the tube down. So I am back to square one and eating has become hard work. At times I have to supplement with Ensure or Boost to keep my weight steady. How ironic, I used to count calories to keep the weight down! There is the option of a possible myotomy and I will probably consult with a thoracic surgeon on this, but I decided to put this on the back burner for a while and deal with my joint problems for the time being.

Learning to live with IBM is like learning to live with a thief that you need to somehow befriend and learn to get along with, but you also know very well that this thief will continue stealing from you. It is a real challenge not to allow this disease to get to you, but instead to count your blessings and make the most of what is given to you.

I keep aiming for that balance!

If you stumbled into my 2008 UPDATE directly and would like to read a fuller description of my story, start here: MY STORY

or you can continue on to my 2009 UPDATE


© 2007-2009 - Dagmar Slaven. All rights reserved.