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.