2000 miles

While I was at the hospital yesterday for physio, I noticed that the odometer on the wheelchair had reached the 2000 mile (3200 km) mark. That's averaging just under 700 miles a year. The new batteries were installed at 149o miles so I've done over 500 miles (800 km) on them since July 4th. Pretty impressive. 

Big Decision

A couple of days ago I decided to go vegetarian. Meat doesn't hold the same appeal it once did and it plays havoc with my gut so why not.

A FB friend asked if I wouldn't miss bacon. I told her that I haven't eaten bacon since I contracted scleroderma - too greasy/salty/rich. In fact eating with scleroderma is all about giving up the things you love to eat but in the long run, they're probably the foods that aren't good for you anyway - french fries, hamburgers, lasagna, ribs, fish and chips, the list goes on but in their place, now that I've committed to vegetarianism, I'll be on the lookout for new ideas.

So, to mark the occasion, I found a recipe for mushroom gravy, went to the market and bought some cremini and shitake mushrooms and proceeded to make the recipe. It was a lot of work but boy was it worth it. It may just be the best gravy ever. I made some substitutes like fresh herbs from my garden in place of dry and regular flour instead of rice flour (gluten free isn't an issue with me) and ghee instead of olive oil.  Froze most of it and plan to take my own gravy to Thanksgiving dinner at my son's next weekend. Today, I cooked up some mashed potatoes and slathered them with the gravy. Absolutely delicious. Vegetarianism might just be okay despite some trepidation.

Of course, because I am on TPN which supplies all my nutritional needs, I won't have to be concerned about making up for the lack of meat.

Update: Thanksgiving dinner at my son's. As planned, I stuck to mashed potatoes with my mushroom gravy, lots of mushroom gravy!  Didn't miss the other fixin's at all. Still, I ate too much and was a little bloated last night but not enough to ruin the good times. BTW, the gravy had been frozen and wasn't affected at all. Tasted jut like the first day I made it.

Will's just over three months now. Held him for quite a while today - a record I think. And, a first, I made him laugh. Sure do love that kid.

Antibiotics for Gut

Grandson at 3 months

Had a visit with my rheumatologist this week. She prescribed flagyl to clean out my gut as I'm not able to eat again and will set up an appointment for an infusion for my osteoporosis. Other than that, nothing to report.  Don't have to go back for a year which is a first as I've been going every 6 months. 

As for the food intake problems. Things have gotten to the point where they were last winter (January/February?). Every time I take food orally, I vomit and get diarrhea. The last time my GP prescribed flagyl, 250mg 3/day for 10 days. It worked and I was able to eat uo until recently so as much as I dislike taking it, if it'll give me another 6 months of eating it's well worth it. Durig the ten days I am only eating 3 crackers on some days to take the edge of my hunger pangs and that's it. Well, almost, as I am allowing myself the luxury of a morning cup of coffee which doesn't seem to be doing any harm and the pleasure I derive from it is worth any problems it may cause.

Selfies are not really my thing but every once in a while I figure hey, why not.

Took this on my way home from the hospital the other day.  Two days earlier my PICC pulled out, only 1/2 way, overnight. I spent the afternoon in emerg only to be told that I'd have to come back the following day because radiology couldn't fit me in. No big deal and it's a pleasant 45' ride on the wheelchair to the hospital, the weather was perfect so why not enjoy it.

Overall, it's been a lousy week- not eating, vomiting and diarrhea off and on since last weekend. Consequently I've been feeling tired and even a bit depressed which is very usual for me. I was in the bank the other day and the ATM refused my card, then I couldn't get it out of the machine because of my hands. The last straw was when I dropped the envelope with my deposit in it. It was pretty busy and I just wanted to cry because everything seemed like a disaster. Of course I wouldn't allow myself to cry, and just proceeded to the teller and did my banking.

Some days, very few and far between fortunately, it just gets to be too much.  My rheumatologist once said to me "It's okay to be down sometimes you know." And she was right of course but I don't have to like it.

Today is another day, I'm feeling much better both physically and emotionally, and life is good again.

Li'l Will

This picture of my grandson was taken just a couple of days ago. He's now about 2 1/2 months old and I am still overwhelmed with emotion every time I see him or his parents post a new image on FB. I knew that being a grandpa was going to be pretty cool but had no idea what an impact he would have on me. There truly is nothing like it. I am blessed.

Meditation

It's been a while since I posted about scleroderma and the benefits of meditation and since I've finally got back on track with a regular meditation practice, I thought this would be a good time to update.

A couple of months ago I ran into a former meditation practitioner from my old sangha. We ended up planning a sit at my place for Wednesday evenings. We invited others and can have anywhere from 2 - 4 people show up.  I also joined a group at a nearby branch of the library for a Tuesday noon hour sit. Having others to practice with on a regular basis has always been a great motivator for me and it's working. I'm now doing a minimum of two 20' sits in a nearby park every day, weather permitting. And instead of looking for excuses or just being too lazy,  now look forward to my daily sits.

And I'm feeling much better for it. My emotions are levelling out again - less prone to anger for one thing. My dealings with others have taken on a more compassionate and empathetic nature. Physically, I have more energy and less discomfort.

What took me so long?

Life is good.

Upgrade for Wheelchair

Better but unrelated news on the wheelchair front this time.

After dozens of emails between myself, my nephew and his brother-in-law Raphaël in Quebec we came up with a plan to replace the standard lead acid batteries with lithium ion batteries. Yesterday, my nephew, with the assistance of his wife Gabie spent twelve hours wiring up and installing the new system consisting of 16 72ah cells.

Although expensive, approximately $4000 Canadian, it should be worth it. Most importantly, I will get a minimum of 3.6 times the range or 40-50 km (30 miles) which means I can wheel around the city all day if I like and not have to worry about draining the batteries.   Secondly, I will get a minimum of 15 years out of them.  I expect they will outlive me in fact so I'll never have to buy batteries again. Finally, they are virtually carefree and give better results in cold temperatures and are environmentally friendly.

I put 8 km (5 miles) on them today and the battery gauge is still showing a full charge - there is a possibility that the gauge may not be accurate with this system but only time will tell.

Life is good.

Update:
Based on the first two days of use results are better than expected. I should easily get 64 km/40 miles per charge. Pretty amazing. That means charging will be necessary only one or two times per week, even less in the winter so these things will definitely outlast me. The manufacturer suggests that they are good for 2000 cycles so at once a week they'll last in excess of thirty years. Wow.
The only negative is that the battery guaage is definitely not working. I have ordered on to wire in at a cost of $13 so it's not a big deal. In the mean time I'll use the odometer to estimate battery charge.
 July 26 update:

Three weeks yesterday since battery installation and I've put 121 miles (193km) on the chair. Have charged the chair 4 times, the moat mileage on one charge being 38 miles. All's well and no complaints.

Wheelchair Problems

Pictured above is my 2 1/2 year old Permobil C300 wheelchair.

A week and a half ago I was wheeling along one of London's busier streets when, bam, out of the blue, I found myself lying on my back on a small pedestrian island in the middle of the street. There I was, completely helpless, dazed, confused and at a total loss as to what had just happened. Fortunately, I had my phone in my pocket and as I was struggling to extract it a woman approached to ask if she could pick me up.  I should explain that I was still seated on the actual seat part of the chair, it's just that my head was just a couple of inches from the ground and my feet were up in the air.  As I was explaining to the lady that I didn't think she would be able to pick me up, a gentleman on a bicycle stopped and, between the two of them they got me and the seat in a semi upright position.

I balanced the seat on the post where it broke off at the base (see picture) and told my good samaritans I would be fine, thanked them and sent them on their way. But I wasn't fine, I was a wreck. I was shaken, felt weak over my entire body as well as nauseous. In short, I was a mess. Fortunately, I had the number of the dealer where I bought the chair on my cell so I called them. At this point it was 4:55 and much to my horror, I got an answering machine. I left a frantic message, giving the wrong address, I realized later, and hung up. In a state of panic, it was now 4:57, I decided to call again and my heart leapt for joy when someone picked up at the other end. I explained my situation and was put through to the service department.  Not surprisingly, I could tell from the service person's voice that he wasn't exactly overjoyed to hear my voice. I was told that he could pick up my chair but not me. I asked if he couldn't bring a loner along so he said he'd see what he could do.

Jumping ahead, at 5:30 the service guy arrived with a loner and I made my way home. I had a meeting scheduled at my apartment for six and was concerned that I wouldn't make it on time. To make matters worse, the loner chair was painfully slow, probably about half the speed of my own chair.

I just made it home on time but was not exactly 'there' for the meeting. After everyone left, my nurse and a woman from the dog rescue place arrived and again,  my mind was still on the incident. I was still shaky and emotionally upset. The nurse asked if I was okay physically at which point I realized my neck was sore. After they left I took an extra pain killer and finally, being alone, found myself crying and thinking about the last couple of hours. All the scenarios went through my mind. What if the post had snapped in the middle of the busy intersection, what if I'd taken the river trail home, what if my head had hit the pavement...?

Sleep didn't come easy and it took a couple more days before my emotional roller coaster ride levelled off a bit. My shoulders and neck were sore for a couple of days but seem okay now. I still find myself a little short tempered and although I tell everyone I'm fine, I'm not so sure. This incident really shook me up. I guess it made me feel just how vulnerable I am. I am also incensed that something as crucial as a wheelchair should break down like it did. I don't know if I'll ever feel totally confident in my chair again. After all, what's to stop the same thing from happening in a couple of years from now.

I got my chair back in a week along with a $165 bill - emergency service call and two hours labour. I refused to pay so the service person said he would have someone call me. That was 2 1/2 business days ago and I haven't heard anything yet.

In my mind, this never should have happened. Permobil the manufacturer, should take full responsibility for a faulty part and there's no way on earth it should cost me a single penny.

Update: Yet another week later and I got the bill for
$165 in the mail.  I have composed a letter which I plan to send off the first of the week. Not happy.

UPDATE:
My physiotherapist from the arthritis society called Motion special tie where I bought the chair and the manager said the bill should never have gone out and that there would be no charge.
Two weeks later I got another bill stamped in red "OVERDUE". I called and, again was told that it was an error and to ignore the bill.
I decided to send my letter* to the Canadian rep for Permobil with a cc to Motion Specialties. Heard nothing from Permobil but the owner of Motion Specialties called and old me that after discussing the matter with head office, they wanted my chair for a day to rectify the problem and hopefully prevent it from happening again.
That's been done and I am happy with the solution.

*

August 7, 2014

Re: Permobil C300 chair problem

Alan Boyd

Permobil

I am writing out of concern for an incident which happened to me several weeks ago.

As I was wheeling down one of London’s busier streets during the evening rush hour, I suddenly found myself lying on my back, on the ground in the middle of a busy intersection. Fortunately this occurred on one of those little islands in the middle of the street – a couple of seconds earlier or later and I would have been in real danger of being run over. After a couple of minutes a couple of pedestrians managed to pick me up and I was able to half stand half sit while I balanced the seat on the middle support post which had just snapped off at the base.

I was pretty shaken up by the event but fortunately was able to contact Motion Specialties who came out and picked up the chair and provided me with a loaner so I was able to get home.

Furthermore, I was an emotional wreck for several days after the incident. My nurse arrived shortly after I arrived home and he was quite concerned about my state. Imagine, if you will, me, lying there in the middle of a busy intersection at rush hour unable to move or help myself. I was totally at the mercy of passersby. I was shaking uncontrollably and could barely think straight imagining what my fate might have been had the post snapped in the direct line of traffic.

My concern now is twofold. First of all, if this happened to me, there is a very real possibility of it happening to someone else if it hasn’t already. And perhaps the next person may not be so fortunate, either hitting their head on the pavement or being struck by a vehicle. Secondly, is this going to happen to me again after another two and a half years? I have to admit that this is a real concern and even now when I go over a bump I can’t help but see myself falling again.

And so, my hope in writing this letter is that Permobil will look into this and take the necessary steps to ensure that it doesn’t happen again.

Thank you for hearing me out.

Sincerely,

Bill Birtch

Cc: Dave Farr, Motion Specialties

       Margaret Vaz, Physiotherapist, Arthritis Society

Today, June 29, is World Scleroderma Day, whatever that means. So, my quandary, how to mark this auspicious occasion? Well, my stomach appears to be fairly settled today and coming from someone who has gone weeks without eating, that is no small matter, so I said to myself, I said "Self, why not try a new recipe, something to take advantage of all those beautifully scented herbs in the garden?" And since I have an abundance of sage, and a nice organic chicken breast on hand I googled "sage chicken" and the result was the picture you see before you. The best part was the sage leaves which ended up nice and crispy which, along with the perfectly fried chicken, made for one delicious lunch. Life is good. Happy World Scleroderma Day mes amis.

Mudras

Saw this on facebook the other day. Take a close look at the ALOKE  mudra. Look familiar? It sure did to me. In fact my hands could have been the model for the image - except for the fact that I've had a finger amputated Ü. And so, I now have a new perspective from which to view my hands which are permanently frozen in the ALOKE or LIGHT mudra because I can take comfort in the fact that they symbolize light or a lamp. Taking this one step further, by being locked in this position my hands are sending forth healing light to everyone I meet and even those I don't meet.  From now on, every imd I shake hands with someone I will imagine that I am giving them the gift of healing light.  

Beats my previous association of something dinosaur like - sclerodactyly (almost) rhymes with pterodactyl.

Just call me grandpa

Born June 2, 2014 @ 12:41 pm. William Charles Michael Birtch, 9 lbs. 3 oz., 22". Everyone is doing great.

Happy to say, I was present (in another room) for the birth of my first grandchild. This picture was taken about an hour and a half after he was born. What an amazing experience. Right up there with the birth of my own children. I am one very happy grandfather.

Balcony Garden Update

Click on image for larger version.

Picture taken a week ago. I now have two more 'bag' pots and a couple of regular pots added to the mix. I really am amazed at how well my garden is flourishing. Had enough basil to make a batch of pesto and a head lettuce which I harvested along with some oak leaf lettuce and herbs for my first garden salad. So glad I took this project on as it is giving me so much satisfaction and pleasure. I really had no idea how much I missed gardening.

My herb garden

And the apple tree is thriving, covered in blossoms and leafing out really well.

Update: July first and I harvested my first carrot today. Have also been eating peas for a couple of weeks now.

Update, July 26:

The garden continues to flourish. Have had carrots, beet greens, tomatoes, peas, cucumbers, a pepper, lettuce and plenty of herbs. Yesterday's lunch consisted of a tomato, a cuc, a pepper and some basil - delicious. Added a few crackers and a very mild blue cheese

GI Doctor visit

Just realized that I failed to talk about my most recent GI Doctor visit  of a couple of weeks ago. My major concern going in was my persistent diarrhea. Although it's been better since my experience earlier this year, it still continues to interfere with my ability to get out and with the arrival of spring I really needed to address this problem.

So, the long and the short of it is, since the immodium is not working, I now have a prescription for codeine - 30mg to be taken as needed and repeat after 6 hours if necessary. Of course the down side is that if I overdo it, I'll end up with the opposite problem, constipation. So far it seems to be working. I still get diarrhea,often in the morning but if I take the codeine, it's been working although sometimes requiring the follow up after 6 hours. And because of its pain suppressing capabilities, I have been skipping my NSAID when I take the codeine.

Life is good.

July 26 update:

Still have diarrhea most mornings but after an hour or so of repeated trips to the bathroom, I'm good for the rest of the day. This morning was the first time in months that I haven't had diarrhea. Yesterday I took three 30 mg pills just to see how that would work out. With the prescription, I only have enough for 2/day but there were a couple of days when I only took one so had the extras. sen though I was ok this morning, I took a pill anyway. It's now 10:00 am ad no bm. Wondering how long this will last. Maybe the answer is to take 3 or 4 pills one day and then go wight for a day. Worth a try anyway.
No nausea or vomiting for maybe 3 weeks now. Although I have been eating, I skip a day if I feel the least bit bloated and that seems to help.

Bella

Meet Bella my candidate for adoption. She is a young, under 1 year, Boston Terrier mix and she's from Kentucky as was Jojo her predecessor. She's a beautiful little girl, energetic, agile and apparently smart as a whip - I've only had her for 4 1/2 hours so too early to form my own opinion but she certainly comes across as very alert and curious.

I already love her but am trying to reserve judgement until we're entirely sure that we're a good match.  Anything less wouldn't be fair to either her or me. She's a tad skittish around the wheelchair so I enlisted the neighbour's dog walker to help me with our first outing this evening. Based on that experience, I think she's going to be okay with the chair. 

And if the following is any indication, it looks like she's pretty comfortable with me. She's already claimed Jojo's favourite spot and that makes me very happy indeed. What a gift it is to earn the trust of an animal. I've also discovered that she's a sucker for a deep muscle body massage - but then, who isn't.

Wish us luck.

Update: 48 hours later.
The wheelchair proved to be no problem. This afternoon we were out for a couple of hours without incident and Bella is pretty much exhausted. Just spoke to her foster mom on the phone and it looks like I'll be keeping her. Happy days.

Update: 1 week later
Well, it's been a week and Bella has adjusted to all the changes in her life and is doing great. Had a huge scare yesterday when her harness slipped off of her when we were out on our morning walk. Boy can she run. Fortunately, she stayed of the roads - it was morning rush hour- and ended up behind our apartment building. After a few minutes she responded to my call and came to me. After we got bcd to the apartment, I discovered hat she'd been chewing on her collar and gnawed right through one of the buckles. Mystery solved. I returned the harness to the store and replaced it with a full body harness sand we are now good togo again. 

Balcony Garden 2

Since the last post I have transplanted everything into 2" pots with a good potting soil and all I can say is WOW! Everything is flourishing. As can be seen from the picture, the plants have really taken off. Even now, three days later I see more growth.

Today I took the next step and planted some of the more cold tolerant plants as shown in the picture below. The chives are left over from last year.

I was pretty much exhausted after planting those three bags but it's reminiscent of a time many years ago when spring would find me working in the garden from sunrise to sunset. It's all relevant, but the feeling of satisfaction is the dame,maybe even better now because the obstacles are greater.  Another hurdle overcome and it feels awfully good. Of course, I'll have to remind myself of this in a day or two when my muscles and joints are aching.

Balcony Garden

When I was diagnosed with scleroderma just over 10 years ago I gave up a great deal, most significantly, my back-to-nature life  style, living in the woods off the grid, solar power, no running water, outhouse and so on. Unfortunately there's no going back in my present condition and I've accepted that, moved on and am enjoying my life in the city. I also sold my motorcycle and my truck, the up side of that being that I'm saving a shitload of money. My power wheel chair is my sole means of transportation now and I am grateful for that.

I also gave up walking a minimum of 5 km every day, playing guitar, photography and gardening among other things. Guitar and photography are now back on my list and this year I have decided to get back to gardening in a big way by growing my own vegetables on my balcony. In the picture above are two varieties of tomatoes, sweet peppers, basil and lettuce. For direct planting I have carrots, peas, beets, cucumbers and hope to get some seed potatoes soon. All seeds are organic heritage seeds and all are recommended for container gardening. I've planted extras for my son and daughter and may still have a few for a local plant sale in May. Oh, I also bought an apple tree, also recommended for container gardening and which I am really excited about.

I also purchased a grow light with full spectrum bulbs and it has proven to be money well spent as my plants are all looking very sturdy and healthy. I've already planted the lettuce into 4" pots and, once I am able to get out and purchase some potting soil, soon I hope, I will transplant the rest where they will stay until mid May when I do the final transplant and move them outdoors, hardening them off in the mean time.

I am very excited about this little project as it is just one more activity that I will have reclaimed from my pre scleroderma days.

Life is good. 

Gratitude

This morning I met with family at a coffee shop for breakfast and even though I didn't eat I did have a cup of coffee. Now, to most people, this would not be worthy of a blog post. I mean, pretty mundane right?

Well, for me there's nothing mundane about it. First of all, for years now I've been hesitant about going out in the early morning because I could never be sure about my bowels. That's still the case on many days but today I felt confident enough to make the leap. And then to actually drink a coffee while out is just as scary for the same reason. But again, I decided to take a chance and it was fine. In fact I relished that coffee and the fact that I was there chatting and sharing the experience with family. So yes, I am filled with gratitude for what most people take for granted every day and I am all the better for it.

I then came home and made myself an omelet which I also enjoyed.

Yesterday, I met with my writing group, our final meeting of what has been a tremendous learning experience for me. As a result of this course I hope to publish a book. A Few Acres of Snow, hopefully some time this fall (Click on the link to read excerpts.) Again I am most grateful for having had this opportunity to work with so many supportive and gracious people.

Life is good.

The picture was taken after breakfast in an adjoining park.

Spring

Sage advice. Having to give up my back-to-nature life style when I was diagnosed with scleroderma was one of the hardest things I ever did. But it's not like I had a choice. The rapid onset of this disease also meant that there was no time to think about it. It just happened. And so I transitioned from a carefully orchestrated life plan to no plan at all. I was simply in survival mode. 

That was ten years ago and I don't know that I can say that, even at this point, I have a plan. But I've certainly progressed beyond survival mode, of that I am certain. Instead of an overall life plan, I've been taking on challenges one at a time and it's working out well. I've become a semi-professional artist selling my work through various venues. In fact, I was at the library last week and someone recognized me and said "Oh, you're the artist." Got to admit, it felt pretty good. I've also come up with a way to play guitar despite my frozen hands. I currently volunteer with three organizations and have started what I hope will be a large vegetable garden - 2 varieties of tomatoes, potatoes, peas, carrots, peppers, beets, lettuce and several herbs - on my balcony. In other words I am keeping very busy and enjoying every minute of it. 

On another topic, our spring meeting is fast approaching. We are fortunate to have Stacey Gicone, an Occupational therapist, speaking on care of the hands for scleroderma patients. If you want more information, contact me and I'll fill you in on time and location.

My son hosted a BBQ yesterday, the first of the season and I was able to partake of the delicious fare he offered up. Yeehaw, spring is here.

Jim Davey

It is with great sadness that I am here to write about another member of our local scleroderma group who passed away yesterday.

Jim Davey and his wife Helen are two of the strongest, most positive people I have ever met. When Jim was faced with the prospect of a double lung transplant just over a year ago, he didn't hesitate and jumped right in with both feet or lungs in this case. His recovery after the surgery was nothing short of amazing and certainly he gained strength from his wife Helen who also amazes me with her strength and positive attitude.

When Jim's name popped up on an email notification this morning, I just knew that it was going to be good news - I had been aware that he was having rejection issues recently. Good news, because that's what I'd come to expect of Jim and Helen's emails. And so when I got around to reading the email later, I was totally taken aback that we had lost him. I didn't know him well, but I did know him well enough to say that he was a good man and he will be sorely missed by myself and the other members of our local group who had come to admire him for his strength, his positive attitude and his humanity.

We love you Jim. Rest in peace.

I continue to gain more confidence in my ability to eat a more varied diet. This past week, I have had chicken fried rice on four occasions, made with fresh vegetables; green, red and yellow peppers, cauliflower, broccoli, carrots and celery along with grilled organic chicken breast and rice cooked in organic low sodium chicken broth. For frying I used a tblspn of ghee.  Delicious and no revolt by my GI tract.

A couple of weeks ago I decided to try coffee for the first time in I don't know how long, but it's been at least a year. Not certain of how my body would react, I bought it at a coffee shop and brought it home to drink. Have done that on three occasions as well as made my own and it went well so today I took a leap of faith and bought a coffee while I was out at the market and drank it there. I can't begin to describe what a great feeling that was. Small pleasures reap great rewards.

Aware that St. Patrick's Day is fast approaching I started thinking about a traditional Irish meal. Corn beef and cabbage, what we always called a boiled dinner at home, is always good but not sure I want to go the cabbage route. So, turning to the internet I ended up settling on a slow cooker Irish Lamb Stew recipe. No Guinness  as called for in the recipe so substituted some red wine. This is pretty out there for me as I've only ever eaten lamb once in my life but if I'm going to experiment I thought I might as well go all out. Will know tomorrow what I've got. Here's hoping.

I Feel Good!

Current temperature is + 4º C and I'v spent the afternoon downtown takin' care of business and shopping. It's the first time in months I've put the chair on low speed and actually enjoyed being outdoors. The sun is shining, the wind is calm and it feels downright balmy out there. Yup, James Brown pretty much sums up how I'm feel in'.

Synchronicity

Had an appointment with my rheumatologist today but it turned out she wasn't there when I got to the clinic. I have to admit that I was a bit annoyed but the patient before me had driven in to London all the way from the Niagara Region and she simply took it in her stride. So I took my lead from her and thought "What have I got to be annoyed about when my trip was a ten minute paratransit ride while she'd driven a couple of hours or more?"

But the best part is, when I got to the elevator to go down stairs, she was still there and asked if I had a blog. Turns out that when she'd first been diagnosed she, like so many of the rest of us, turned to the internet and found my blog. Small world. We had a great chat and she was most gracious and generous with her praise about the blog and how it had helped her throughout those early days. I have had close to 10 000 hits to the blog since it started but can count on my fingers the number of comments so I can't express how much it means to get feedback like this.

So, I just wanted to say "Thank you, Sharon" for making my day. 'Twas very nice to have met you and I hope you and your friend enjoyed your day in London.

The Diagnosis

The following is an excerpt from my upcoming book A Few Acres of Snow which relates a special time in my life just before I was diagnosed with scleroderma.

Reflections 19

The Diagnosis

“Oh no, people die from that.” these were the words uttered by my best friend from high school days after I told him of my diagnosis. Not exactly what I wanted to hear, but he meant no harm. It just sort of slipped out and I’m sure he regretted it immediately.  And it’s not like I wasn’t already aware that this disease was potentially fatal. After all, the first thing I did upon arriving back at my daughter’s after being given my diagnosis was to turn to the internet where I quickly discovered that I had a fifty percent chance of living beyond five years. Fortunately, I kept looking and found that the information was outdated and the prognosis was not nearly so bleak. 

And although my death didn’t appear to be imminent, over the next several months, I still went through all the stages of grieving - denial, anger, bargaining, depression and acceptance -  if not for the loss of a life then for the loss of a lifestyle.

Of course the most immediate repercussion was the realization that my adventure was over. The doctor had said, no known cause, no cure. A return to Bancroft was not in the cards. I stayed with my daughter for a few more weeks before deciding that it was time to get my own place in the city. I ended up renting a small second floor apartment in downtown London. Second floor, what was I thinking? Even in those early days, climbing a set of stairs was both painful and exhausting - still in denial perhaps?

My way of coping was, again, to turn to the internet. I researched alternate healing methods with the result that in mid April I found myself at Pearson International Airport in Toronto boarding a plane for the first leg of my journey to the province of Goa, India where I had booked a one month stay at an Ayurvedic Health Clinic. 

Overall, the stay was a positive one. Days were filled with visits to the doctor, every kind of massage imaginable, some gruelling and painful, others sheer ecstasy. Then there were the daily enemas which, near the end of my stay, culminated in the imbibing of the most foul tasting and violent of purgatives imaginable. There were the yoga sessions where the leader had trouble accepting the fact that I simply could not do any of the various assanas because of my limited mobility. I finally convinced him to lead me in meditation sessions instead. There was the extremely bland diet based on my body type and ailments as prescribed by the doctor. This was probably the most disappointing aspect of the entire trip as I’d been looking forward to trying some new and exotic Indian foods. 

The end result was that, as my time at the clinic drew to a close, I was seeing some improvement in my mobility, like the day I found myself going up a flight of stairs two steps at a time or discovering that I could reach my feet again enabling me to put my socks on, both small but significant gains. My doctor, pleased with my progress, suggested that I should stay to continue the treatment but this simply wasn’t a possibility. It would have meant losing my airfare home, a substantial sum, not to mention forking out the cost of another month or more at the clinic. No, it just wasn’t going to happen.

The trip home, totalling thirty-eight gruelling hours between flight time and lounging about in airports in New Delhi and Amsterdam was so exhausting that I lost most of the gains I’d made over the previous thirty days. No regrets however, it was probably what will turn out to be my last great adventure. 

After arriving home, I was faced with the fact that I’d better learn to accept my condition and get on with my life. The hardest part was the loss of my independence, specifically, having to ask people for help for even the smallest of tasks. And of course, they never did things when they said they would or in the manner which I would have done them. Sure did learn a lesson about biting my tongue and just being grateful that I had people to ask. Truth be known, this is still the most difficult part of being disabled and I don’t know if I will ever get used to asking others to help with everyday tasks.  An important lesson in humility I suppose.

Now, ten years after my diagnosis, my biggest challenge is my digestive tract. I no longer get nutrition from ingesting food orally which means that after a couple of unsuccessful years on a feeding tube placed in my abdomen, I am now receiving Total Parenteral Nutrition (TPN) which means I am hooked up to an intravenous feed twelve hours a day six days a week. There are times when I am able to eat normally, purely for pleasure, but there are also those times when eating is out of the question as it causes diarrhea and nausea. As I write this, for example, I am approaching one month during which I have not taken anything by mouth except water and a daily cup of tea which I allow myself - at least it’s something to look forward to. 

The lack of mobility, the contracted joints, hands frozen in half fists, I have managed to adapt to, going so far as inventing a new way to play guitar.  My primary means of transportation is a power wheel chair in conjunction with paratransit. 

And that’s a quick summary of the current state of my health. With the help of friends, family, and an extended professional health team and several devices, my wheelchair being the most obvious, I manage quite well and can honestly say that I am enjoying life to the fullest.

Winter, Please, Enough Already

Tomorrow is the end of February and, I hope, a sign that these frigid temperatures will soon be a thing of the past. It's been a brutal winter not only for the temperatures but for snowfall as well. Sidewalks in my neighbourhood have been impassable the majority of the time and on those few days when it's been a little warmer and I'm able to get out I've often been forced to take my wheelchair onto the road, not something I like to do but it's either that or never get out unless I take paratransit.

On the food front, things are still going well. I had one occasion when I vomited and have intermittent diarrhea on a few occasions but nothing I can't liv with. Continue to be a little more daring in my food choices. Yesterday I had a panini sandwich with ham, mozzarella and a dill pickle.  Happy to repot that there were no ill effects at all. Also drank a coffee a couple of weeks ago with no ensuing problems. Have added flax milk to my diet. This is a relatively knew product and I thought I'd try it instead of rice milk. I like that it's not as watery as rice milk and the taste is quite pleasant.

Seeing my rheumatologist next week an will be discussing my GI issues with her.

Otherwise, all's well and just hoping for an early spring.

In three days it will have been one month since I have taken in anything by mouth.  The last thing I ate was a couple of teaspoons of yogurt and before that a banana cut up, mixed in with plain yogurt and eaten over three days.  I brought it all up and also had diarrhea.

I phoned my dietitian who works for my GI doc and the long and the short of it is, he wouldn't see me until my regularly scheduled appointment in April and suggested I see my GP. This was not what I wanted to hear, but I scheduled an appointment with him to please everyone. His first question, not surprisingly, was "Why are you here, shouldn't you be seeing our GI doctor?" Uh huh.

The result of my visit was that he put me on flagyl for 10 days to see if my problem was a result of unwanted flora buildup in my GI  tract. I have now finished the antibiotic and it did help some but not to my total satisfaction. The most obvious sign is that I actually had a couple of bm's with solid stool this past week. The real treat will come when I try eating again which, I think, may be today. Think I'll try a small serving of bulgar cooked in rice milk and sweetened with a tiny bit of maple syrup. I've chosen this because it's what I happen to have on hand that shouldn't be too hard on my gut.

If I can keep this down and avoid diarrhea, I'll stay with 'safe' foods like rice and such over the next few days and only branch out when I'm convinced I'm ready. Here's hoping.

Next day: It's mid morning on Monday and bulgar seems to have been a good choice. No nausea, no diarrhea. Going to brave the weather and messy sidewalks today to get out to buy some white rice and a couple of apples, all organic of course.

Tuesday: Ate half an apple yesterday and drank half a bottle of 7up which seems to calm my stomach, not that I needed it. All's still good. Today I cooked 1/3 cup of white rice in chicken broth, then mixed in some canned peas which I figured would be easy to digest. Also had a tiny piece of Havarti cheese for desert. Been drinking tea every day as well. It's now 8 PM and feeling good. Had a regular BM this morning followed by a very loose BM. Took some imodium. Been taking dom paridone every day.
Thursday:
Yesterday I ate 1/2 apple in morning and chicken broth with rice and peas in afternoon. And a tiny slice of Havarti cheese for desert.
Solid stool this am and no nausea.
Today I am preparing chicken broth w rice and peas again. May have a bit of 7up later.  It's all good and very encouraging.
At this stage it gets very tempting to try those perch filets I have in the freezer but will hold off until at least Sunday when I hope to celebrate a whole week of eating every day.

It's now Monday, 1 week and a day after I began eating again. In the interim I've eaten every day. I've had chicken broth a couple more times with and without rice and/or peas, steel rolled oats with rice milk and maple syrup, apples and yes, yesterday, I had a perch filet coated in flour and seasonings and fried in ghee. Today I ate a baked potato with ghee, freshly picked chives and parsley. No diarrhea in three days and stools with some form to them - haven't experienced that in many months. No nausea at all. Yesterday I also started taking probiotics, not the chewable ones I'd been using but in powdered form from a homeopath which must be kept refrigerated. Very happy with my progress.

Managed to get through the holidays relatively unscathed. Enjoyed getting together with family and friends. Unfortunately, Christmas dinners weren't part of the enjoyment. I attended two and although I haven't had much luck with taking food orally for some time I decided to try a turkey wing at the first dinner. Big mistake as I was up all night vomiting. So, for the second dinner I abstained from eating or drinking entirely. Not easy sitting there watching twenty people enjoying a fantastic meal but, like I said, at least I got to see some folks I only get to visit with at Christmas. Better, at least than last year, when I was hospitalized for the whole time.

So yes, my digestive tract continues to be my major challenge. I have now quit taking in food by mouth entirely because it's gotten to be a sure thing that I will bring it up, if not that day then within a day or two. Diarrhea is also y constant companion. Got blood work done three days ago and the dietician  called to say the that all's fine with the exception of slightly lowered potassium levels. Consequently will be seeing my GP next week to see if we can get to the bottom of the GI problems.

On to other things.

My art studio experience is now over. I pulled out at the end of December. Although sales were good over the few weeks preceding Christmas, paying rent in the slower months just makes the venture a poor financial investment.  No regrets though. It was a fun experience and am now looking to the future. Currently the walls of my apartment are covered in pictures. For the month of February, I will have a showing at the London Public Library, Central Branch. This should give me exposure to a whole new audience. Also is some interest from an art store who, I hope, will take some of my work to sell on commission. 

Also have upcoming activities with Scleroderma and Arthritis Societies. Started doing ESL with a new student, my second, a couple of weeks ago. This weekend is the third weekend get together with thee writing group which is always inspiring and I could use some inspiration right now as my writing has slowed considerably although I currently have 385 pages of my memoir in rough draft form. 

In summary, I'm hopeful that I can get my GI problems sorted so I can at least start eating a bit again an, more importantly, be able to go out without worrying about having an attack of diarrhea.