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.