In October of 2000 my life took an unexpected turn when my wife of thirty-one years died of a massive heart attack. I worked for another year and a half and then took an early retirement from the teaching profession. I had decided that a total change was in order so I purchased a small cabin in the woods, set it up with solar power, a wood cook stove, and an outhouse and settled in for the winter.

And what a winter it was, hip deep in snow, record breaking low temperatures and, at times, seemingly never-ending. But I am not complaining for this is what I had been looking for, an adventure and a challenge. I had never felt healthier or in better shape in my life. I had found peace and contentment in my new found back to nature lifestyle. My biological clock was readjusted, I ate when I was hungry, (if you have never tasted, or smelled, freshly baked bread from a wood stove you have not lived) slept when it was dark, rose at the crack of dawn and spent the days, accompanied by my dog Molly, cutting walking trails in the bush or just exploring my new surroundings.

That spring I began to feel the odd ache but thought that it was my arthritis acting up so paid little attention to it. By mid summer I was having trouble walking and riding my motorcycle and seemed to be suffering from chronic shin splints. By late summer my hands were itchy, swollen and tender to the touch but I managed to cut, split and pile ten cords of wood for the winter believing that my arthritis must be the source of my complaints. By fall the achiness had spread throughout my entire body, walking anything but short distances had become next to impossible and my hands were not only increasingly tender but my fingers were beginning to curl. I also noticed that they became cold after only brief exposure to outdoor temperatures.

In November, I reluctantly phoned my doctor in the city and made an appointment. Medications were prescribed to reduce the swelling and treat arthritis but to no avail. In December I returned to the city to be with my children for the holidays and made another appointment to see my doctor. I was getting worse by the day. Standing up from a seated position required great effort as did most simple tasks. Incidentally, can anyone tell me why they make toilets so low to the ground? I hurt all over and was certain that this was not arthritis but something more elusive. I did not return to my cabin after the holidays but remained in the city determined to get to the bottom of this illness.

In February of 2003, after a referral to a rheumatologist, I was diagnosed with scleroderma. I was relieved to have a label for my condition but the doctor was not very reassuring by telling me that there was no effective cure or treatment. I left his office, brochure in hand, and went back to my daughter's where I turned to the Internet to find out everything I could about this ailment. After countless hours of searching the web and sifting through a glut of information, diffuse scleroderma was my self diagnosis, which has since been confirmed. Determined not to be beaten, I traveled to India where I spent a month at an ayurvedic clinic where I was treated through diet, herbal medicines and various types of massage. After the month, I had regained some mobility and flexibility such that, for example, I could again put my own socks on. Unfortunately the relief was only temporary and soon after my return home I began to lose any gains I had made. In my present condition the demands of such a long trip to India make a return journey all but impossible or I might be tempted to try again.

It has been one year since my diagnosis. I have accepted the limitations that scleroderma has placed upon me and the resulting changes in life style. I take a minimum of medications, an NSAID and sleeping aid, I meditate, attend physiotherapy sessions and learn new tricks daily to make routine tasks a little easier. I have a power wheelchair on order and I am also learning that it is okay to ask others for help. Six months ago, I was tempted to give in and accept the worst but, thankfully, all that passed and I am now confident that things can only improve. Now if spring would only come, things would look even brighter!

~ Update 01-06-06 ~

Another year has passed and it has been quite a journey. Next month will mark the second anniversary of my scleroderma diagnosis. My wheelchair arrived in April, and it, along with the end of winter, has truly been a blessing. I am now able to walk my dog and get out to do my own shopping and make appointments without wondering how I will get to them.

I participated in a six-week day program for scleroderma patients and also took the Arthritis Self-Management Program. Both of these programs were highly beneficial and I would encourage everyone to speak to their doctor or their local arthritis society to see what opportunities exist in their community. They were not only informative but provided an opportunity to meet others who shared my concerns and were able to offer support and advice as only someone who has been there can do. I also cannot say enough in praise of the Arthritis Society since their continuous support and encouragement have done more than anything else to help me maintain a positive attitude and make this journey as painless as possible.

As for my symptoms, things have, for the most part, leveled off largely due to continued weekly physiotherapy sessions and an exercise routine. The one exception is that I have developed a chronic night cough and some 'crackling' noises in my lungs. Consequently, I have been placed on a medication which I am not happy about due to the long list of potential side effects, but I have decided that the risk/benefit ratio is probably in my favor so am going ahead with it. I have also been booked for echocardiogram and pulmonary function tests as another precaution to see how my heart and lungs are coping.

I still have days when I become frustrated and long for a more active lifestyle. I still get upset when someone promises to run an errand for me but does not do it in my time frame or if it is not the way I would have done it. But all these things are teaching me patience and appreciation for what I do have so in the end I know I will come through it all as a stronger and better person.

~ Update 04-25-07 ~

Yet another year has passed, three since my diagnosis now. My health remains the same, my biggest challenge being weight maintenance. Three years ago, I weighed about 165 pounds which on my 6 foot 1 inch frame meant I was slim even then. I am currently at 106 and have been as low as 100.

I don't have much of an appetite, have difficulty swallowing and fill up quickly so eating just isn't as appealing as it used to be. I recently saw a GI specialist to discuss a feeding tube but, on his advice, have opted not to go there for now. Instead I have an appointment with a nutritionist next week. Hopefully she will have some suggestions to help me gain some weight back. Otherwise life is good.

Up until the end of January, winter was kind to us here in London enabling me to get around well. February has been extremely cold so aside from three short treks per day to take the dog out, I have been sticking pretty close to home. I have been keeping busy with my computer building and maintaining a personal web site, Bill Birtch, and processing photos taken over the summer. I am running out of ideas however so cannot wait for spring when I can start taking pictures again - Raynaud's makes it totally impractical to even think about trying to use a camera in cooler temperatures.

Last spring I completed training so I can deliver the Arthritis Self Management Program and have since delivered two sessions of that. Once the weather warms up, I hope to deliver another one. I am finding this to be a very rewarding activity

So, in summary, my health remains stable. The only medication I take regularly is ibuprofen and I have recently cut back on that. I have found some new hobbies to fill my days. The health care professionals I have contact with are all wonderful and I have much to be thankful for. Or course, some indication that I am going into remission would be welcome but if it doesn't happen any time soon, I am okay with that too. We will just see what the new year brings.

~ Update 03-17-08 ~

The arrival of March means spring cannot be too far off and that means getting outdoors more frequently and more importantly, back to photography. Yahoo! I just passed the four year anniversary of my diagnosis. Last year I emphasized that my scleroderma had settled down and that things were generally great. Quite a bit has transpired since that last updateand things have been less settled.

On a positive note, my rheumatologist noticed some very minor softening of the skin on my forearms. That was last spring and the skin continues to improve but it is a very long, slow process and nothing to get too excited about. My initial elation about remission has dampened somewhat. Last fall I had an infected digital ulcer with calcinosis on the middle knuckle of my right ring finger which was basically a deep, open wound and caused me a great deal of pain. It took a couple of rounds of very aggressive antibiotics to clear that up but not until mid December. At the same time I got a bout of the flu which, in two days, caused me to lose the little bit of weight I had put on over the past several months.

In the late fall, an echocardiogram indicated, for the first time, some minor heart damage. Medication, Vasotec, was prescribed and that was the end of that. I have also been back to the GI doctor. The outcome of that visit was that I would call him to schedule insertion of a feeding tube if my weight fell below one hundred pounds. At Christmas I dropped to ninety seven pounds but started to gain it back and by mid January was up to one hundred and seven. A month ago, however, I got pneumonia and my weight plummeted to ninety three pounds in about three days. That is now cleared up and just this past couple of weeks I have started to gain again and am now just over the one hundred mark. Another reprieve! I see my GI doctor again on April first so I will continue to work hard at putting some weight on.

Something good did come out of the pneumonia ordeal. Along with the pneumonia, the chronic night cough I had been experiencing for the past three years or so worsened and I was hacking intermittently twenty-four hours a day. On a couple of occasions, the topic of milk came up and I was told that I should stop drinking it because it made the phlegm in my lungs thicker and, thus, harder to expel. So I decided to give up what was my favorite beverage to see if it would help. Well, not only did the cough from the pneumonia lessen but my chronic night cough disappeared entirely within a couple of days! Needless to say, I am absolutely delighted.

I have also had a recent bout of cellulitis, skin/connective tissueinflammation caused by a virus but it was cleared up in a matterof days with antibiotics.

I have chronicled the above for the benefit of others who may have scleroderma in the hope that it may help them understand their own experience with this disease. If it sounds like I am complaining, then please know that, overall, I continue to enjoy life to the fullest. I deliver a couple of programs a year at the local Arthritis Society and have begun teaching meditation to seniors at a local facility. Of course there are things I would like to do but cannot due to my physical limitations, but everyone has limitations placed on them to varying degrees and certainly there are many who face much greater challenges than me. Above all, we must maintain a positive attitude and make the best of each situation as it arises.