This year marks the 20th year of my having to deal with myositis.† It was first
diagnosed in 1989 as Polymyositis and then changed to the diagnosis of Inclusion
Body Myositis in 1998.
Like they say: I have come a long way!†
Considering the past two decades, I am grateful and amazed that I am still able to do a number of things independently which is so important for oneís self esteem. I am still able to shower and get dressed by myself, can still clip my finger and toenails, take care of my hair, etc. I am able to transfer from my power chair to my powered Lazy Boy recliner or to my stair lift that gets me to the upstairs of our home. These maneuvers often require the use of a walking frame to steady myself during the transition. Over time I have acquired a few extra walkers and keep them handy in different areas of the house. I also have a walker in our car.
I am still using the same raised toilet (height of 19") installed in 1997, but now with the addition of a grab bar on the left wall. Info for the curious: in order to raise myself from the toilet, I position my left hand between my legs on the toilet seat and push up with a straightened arm while my right hand pushes up/back on the vanity to my right. During this maneuver my feet have to be firmly planted on the ground and push down simultaneously plus the back of at least one of my legs is leaning against the toilet bowl for balance. Once I am up my knee will be locked and I have to hold on to the grab bar for balance and maneuver back to my chair. An absolute must are shoes or slippers with good gripping soles that leave plenty of space for the toes. I found that in public restrooms or other homes I depend on having a grab bar to my right and the toilet has be of sufficient height (19-22"). Otherwise it calls for "standing only". If nature does not cooperate at this point, then I am out of luck. Needless to say, for times when punctual function of my intestines is not guaranteed, I will change my plans of going out unless the toilet facilities at my destination are fully suitable. It is a sad statement when your life is being run by your bladder or your digestive system! But that has become my reality at this point.
By the way I have used this same maneuver to raise myself up for many years when trying to get up from any seated position, but the chair had to be steadied by someone so it would not move since the slightest movement would take away my momentum!
A word of caution here in case you should have gotten too rosy a picture of my present status. Anyone observing me while I am transferring or taking a few steps with a walker will have no trouble recognizing that I am at the very edge of pushing my bodyís limits.
If I was not aware of this myself the frequent fatigue and my achy body would be a swift reminder.
Last year, I did acquire a second power chair for the upstairs floor (a Jet 3 Ultra which I found at a reasonable price on Craigís List, much like the first.) If you wonder why insurance was not involved with this purchase check my last yearís update. Also, I doubt if any insurance would be willing to cover a second power chair. These chairs have become an extension of myself and have given me a lot more freedom and independence, but most of all they have prevented falls and given my poor legs time to recover. I do make a point of standing up as often as the daily routines require. I will stand in front of the sink or stove for chores or cooking, having my right leg locked and leaning it back against the heavy power chair and the other leg with knee slightly angled and resting it against the sink. This way I can stand just long enough for what I have to do and, in case I need a break, it is easy to just sit down again.
My power chairs are rather basic units with no option of raising the seat or tiling back and/or reclining. Eventually I will need to replace them with a fancier model that has more options, but for the time being they serve me well and are rather handy and easy to maneuver around the house. In fact, the times we have to use the manual transport wheelchair to go to homes that are not accessible to a power chair, I do feel very much handicapped in it. Especially since my hands have become far too weak to operate it myself manually. Also, in order to get up from this manual wheelchair, someone has to hold it super tight in place since it is too lightweight and not sturdy enough for me to push up from on my own.
Transport chair with pillow, without pillow, and ready for the car.
I still go to my water therapy in a heated pool at our local hospital, where they have a lift to hoist me in and out of the water. I cannot stress enough how beneficial this water therapy has been for me. I have been able to retain flexibility and balance. I am convinced that it is because of this fact that I am still able to function fairly independently at this point and consider it one of my blessings. Also, over the years I have formed lasting friendships with other patients that exercise there and often the sharing of their problems puts my own in perspective.
That said, I am certainly not as independent as I would like to be. I do need help with cleaning, laundry, and shopping; but I am surrounded with supportive family and friends that are willing to pitch in. I have learned the lesson not only to ask for help when needed but also to gently decline help when I am still able to do it on my own. Even if it means some struggling on my part, it is worth it for the sake of retaining my self esteem. Here we have to learn to observe ourselves very critically and ask if our safety is compromised by our being simply stubborn or if it is really worth our while to overstress the already weakened muscles.
I also wanted to include here that having talked to an occupational therapist recently she convinced me for safety reasons to replace my regular shower seat in my bath tub with a transfer bench. I adjusted fairly quickly to this change and I do feel safer now. Of course this bench is sort of an obstacle in the tub and my husband has to remove it whenever he takes his own shower.
I am posting a few pictures of assistive devices and/or tools that have been helpful and still work for me like door hinge extensions to widen doors, door knob grabber for a better grip, a dish brush that doubles nicely as a hook to pull open drawers, a jar opener, assorted grabbing aids, buttoning help, nail clippers to help with poor grip, a back scratcher that also doubles as a reaching device, use of a knee-high for a cheap soap on the rope that won't slip, and pump bottles for lotions and shampoo. For glassware I prefer stemmed glasses since they are easier to hold with the palm of your hand. A disposable plastic cup will still work fine too. In a restaurant I may ask for a straw since their water glasses are usually much too large and heavy.†††††††† ††††††††††††††††††††††††††
Door Solutions: Hinge extension, Lever Handle, and Door Knob Gripping Aid
Dining Solutions: Glassware with Easy-Grip handle, Cutlery Grippers, Straw and a Plastic Cup
Bath Solutions: Tub Transfer Bench and Homemade Soap in a Nylon Knee-High Sock
Grip Solutions: Various items with easy-grip and/or ergonomic handles that help with everything from buttoning a button to opening drawers. For more complete descriptions, scroll over the picture.
As mentioned in my previous years' notes I have come to consider my knees, hips, elbows and wrists my most precious parts. These joints need to be cared for, respected and pampered in order to keep them happy. Any wrong move, for example: a slight over twisting of my knees while trying to transfer from one chair to another, can cause an injury that may take days or even longer to heal. In the meantime I have to face the fact that I can no longer put weight on this knee or depend on the safe use of this joint. My right elbow is in a perpetual state of teetering on overuse and latent tendonitis is the result. Already weak arms are taxed differently when reaching for a Ĺ gallon of milk from the fridge while being in a seated position! It is not unusual for me to have to ice my elbow after I return from my water therapy since the exercises there require more effort now than in years' past. I also notice that I am dropping more things these days. The reason for all this, of course, is the relentless progression of the disease that keeps robbing me of more muscle mass. It is a rather fine line to discern what is still possible but, at the same time, not do too much and make things worse.
ONGOING SWALLOWING SAGA
In the last six months my swallowing problems had reached a stage that I finally decided to make an appointment with a thoracic surgeon to discuss a possible cricopharingeal myotomy since my last throat stretching had to be abandoned due to the upper sphincter muscle closing up during the procedure.† (The cricopharingeal myotomy is an operation in which they would cut this muscle.) The surgeon did not seem very eager to go for the myotomy and suggested that I consider a peg tube but, after a thorough discussion, we agreed that he would try yet another stretching procedure. This time the procedure would occur under full anesthesia. If this did not work he had my permission to do the full myotomy.
I am very grateful to report here that the procedure was done in February and the surgeon was able to do the stretching and did not have to resort to cutting the muscle! That said, the stretching did not go to the extent he had hoped to reach. This means I will have the same procedure repeated in approximately 3-4 months in hopes to achieve a greater opening. The good news in all this is that my swallowing has improved quite a bit, although it is still far from optimal and meal times take quite a while.
BOOK LISTINGS & WEB LINKS
I have added a few more titles to my book list and I encourage you, the reader, to pick and chose from them. Many of these books have proven to be very useful tools for developing my coping skills, and I am grateful to have come across them in my journey with myositis.
I also want to encourage you to click on the various links on the left side of the† MYOMUSINGS home page. There, TMA is a must, and the exchange among patients on the community forum (click on community) is invaluable. Also Bill Tillierís site is a treasure trove of information on all sorts of levels and has been a tremendous resource for me. The more we as patients know about myositis the more we will be empowered and able to be better advocates for our cause.
FUNDRAISING AND A QUOTE FOR 2009
In closing, I want to mention that in August last year I ran a successful fundraiser for myositis research to raise awareness for Myositis Awareness Day which Congress had designated for September 21.† I was doing it with a letter writing campaign to my family and friends that had supported myositis walks in the past. Due to their compassionate response and support, I was able to raise a total of $ 2,675 for TMA. I would love it if everyone reading this would start similar campaigns of their own. Not only to raise awareness about myositis but, of course, to also raise the much needed funds for research. This year a friend from our church has indicated his willingness to do a fundraiser walk for myositis, and I am looking forward to be spreading the word with his help.
My closing quote is by Marian Wright Edelman:
Donít dwell on what you lack,
dwell on what you have and use it to the fullest with gratitude.
Donít dwell on your failures -
learn from them and move on.
Donít dwell on your fears or sorrows -
dwell on your hopes.
May this year bring us closer to a cure!
If you stumbled here directly and would like to read my story from the beginning, start here:
or you can
RETURN TO THE MYO-MUSINGS HOMEPAGE
* A note from the editor. As of March 22, 2009 this web page is two years old!
Way to go Mom!
© 2007-2009 - Dagmar Slaven. All rights reserved.