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.
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, 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.
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 update and 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 tissue inflammation caused by a virus but it was cleared up in a matter of 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.
Well, it has now been five years since my diagnosis and, in brief, life is good. My scleroderma symptoms, with one exception, remain stable which means that pain and discomfort are minimal.
Weight maintenance continues to be the major challenge. In April of last year I entered hospital to have a feeding tube installed, more specifically, a G-J Tube. The procedure itself was short and caused only minor discomfort. The big change occurred when I arrived home. While in the hospital, they tried to set my feeding rate at 120ml an hour which resulted in my bringing it all up. I was given instructions to back off to half that and slowly build up the rate to 120 again. I won't go into all the details but will simply say that 90 ml proved to be the maximum rate at which I could comfortably feed. This meant that, in order to get my prescribed 1400 ml a day, I had to be hooked up in excess of 15 hours a day. Summer was coming, my time to be out and about photographing and just enjoying the warmer days. Needless to say, I was not happy but I accepted it as necessity and hooked up every evening between 6:00 and 7:00 and disconnected mid morning. The good news is that within six weeks or so, I had gained ten pounds.
It is now eight months later and that hasn't changed significantly. I have had to back off again on the feedings, down to sixty ml for several months, due to bloating and nausea. Several courses of antibiotics have helped to clean out my gut such that I am approaching 90 ml again. The big change however is that I am just hooking up for eight hours each feeding. The beauty of this is that it coincides with my sleep time and thus I am free to move about as much as I want the rest of the day. Of course I would like to gain another 10 or 20 pounds but I've concluded that quality of life is more important than any weight I might gain by being tied to a machine for fifteen hours a day. At eight hours I am able to maintain my present weight of 110 pounds and I can live with that.
Since my last update I have also taken up another hobby, one which, unlike photography, is not dependent on the weather. Before I got scleroderma, I played guitar. I was never very good at it but found it relaxing and a great way to pass the time. After my fingers curled up and my hands became frozen in a half fist position, I gave away or sold my guitars and amplifiers because I was certain that I would never play again. Well, last May, I got to thinking about how much I missed playing guitar and wondered if there was some way that I could manage it. After all, I had adapted every other aspect of my life around my disability so why not that. And the solution was quite simple actually.
After some research on the internet, I decided that I might be able to manage with a lap steel played with a slide and finger picks. Within a couple of weeks I purchased a cheap guitar on eBay and received it in early June. I purchased some lessons on playing blues slide guitar, also on the internet, and I have not looked back since. My new hobby has transformed my life. I am playing by ear and improvising to all my favorite blues tunes, none of which I was able to do before. In fact, I now own three vintage lap steel guitars, and the same number of amps. I have never had so much fun with any of my hobbies in the past. Just goes to show what we can accomplish if we set our minds to it.
This past summer I took on the shared responsibility of heading up the local chapter of the Scleroderma Society of Ontario and that is also proving to be a rewarding experience. We are currently in the process of planning several events to raise the level of awareness about scleroderma. To that end I will be appearing in a couple of television spots along with my doctor. But for me, the most exciting event is to take place this June, Scleroderma Awareness Month, when our city's first ever Scleroderma Awareness Concert is to take place. The venue is booked, we have three very talented blues/rock bands lined up to perform and there will be plenty of door prizes and raffles to contribute to the fun. And, if I can work up the courage, I may even take my guitar and join in on a song or two. No promises though.
And so it would seem that the last year has been about adapting, about discovering my limits and expanding into new territory. All in all, it has been a pretty good year and, as I said in my opening paragraph, life is good.
It seems like an update is long overdue here as a lot has happened in the last three years since I did the last one.
One thing that hasn't changed is that my main challenge continues to be weight maintenance. I basically tried every formula available via my G-J tube but always with the same result. After a month or two and very minor weight gains I would begin to experience bloating and nausea such that I had to keep cutting back on my feeding volumes with the result that I would then lose any weight gains I'd had.
And so in the fall of 2010, after my weight had plummeted to 90 pounds, and after much deliberation, I agreed to have a PICC line installed so that I could go on TPN (Total Parenteral Nutrition). I knew that this was a last resort but I basically had no choice as I was literally starving. And so, in early November I began my TPN feeding routine with 12 hours per day of intravenous feeding made possible by the support of my daughter who took on the task of hooking me up each evening and then returning every morning to unhook me. And with one exception, last summer when I got an infection from the line and had to be hospitalized, it has proven to be the best decision I could have made. Currently, after a little more than one and a half years on TPN, I weigh in at 140 pounds, that's a weight gain of 50 pounds. As a result I feel and look healthier than I have in a very long time. Certainly it's an inconvenience being attached to my "feed bag", as I like to call it, 12 hours a day but it sure beats the alternative.
I still try to take in food orally as much as I can, primarily to keep my digestive tract working and, just as importantly, to derive some pleasure from eating real food. What I eat is basically a never ending experiment as some foods have made me drastically ill with severe diarrhea and vomiting but, again, it's a trade off because the things that I can eat without undesirable consequence give me great pleasure. As part of my pain management I have been taking prednisone off and on for the last couple of years with the added benefit that it improves my appetite such that I actually feel hungry which is not usually the case.
Another incident that occurred about the same time I began TPN was that I had an ulcer on the base knuckle of my right index finger which became infected with the result that I had the finger amputated. This again meant adapting to the way I do things but now, after a year and a half, I hardly notice the absence of my finger.
Also since my last posting here I have become the co-representative of the Scleroderma Society of Ontario (SSO) for my city. Among the initiatives we have undertaken is to start a Walk/Run in the Park for Scleroderma. In our first and second walks we raised $11,000 and $22,000 respectively. Next week will be our third walk with a goal of raising $33,000. All funds go to the SSO to support research.
I should also mention here that, a couple of years ago, after getting my wheelchair stuck in the snow for the umpteenth time, and on the suggestion of one of my case workers at the arthritis society, I contacted the Tetra Society, a group of volunteer engineers who build assistive devices for people with disabilities. The result was that I now have a 'winter' wheelchair which, thanks to a set of killer snow tires (actually cultivator tires) plow through several inches of snow with ease. The chair had to undergo a number of alterations to make this work but Joe, the local Tetra volunteer, proved to be up to the challenge and I will forever be indebted to him and Tetra for their assistance.
And so, in summary, although there are still challenges to be met every day, life continues to be rewarding and I can honestly say that I am enjoying it to the fullest.
Email: [email protected]
Story edited 01-06-06 JTD
Story posted 01-27-06 SLE
Email address updated 01-28-06 SLE
Story update edited 04-25-07 JTD
Story update posted 04-25-07 SLE
Story update edited 03-18-08 JTD
Story update posted 04-01-08 SLE
Story update edited 02-27-09 JTD
Story update posted 03-25-09 SLE
Story update posted 11-19-12 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Gangrene and Amputation
Gangrene and Amputation Stories
Emotional Adjustment: Coping
Emotional Adjustment Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Juliet Youkhana; and donations in loving memory of Jim Miller and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to: