Sad news to report to all of you following this blog

Hi all,
My name is Lisa, I am Bills daughter. On November 6th, my dad received an infusion for prevention of osteoporosis. When I went to hook up his IV on the 7th,(for his TPN) he was experiencing what we assumed were side effects from that infusion - general malaise and flu like symptoms. My brother, his girlfriend and their baby decided to meet me there that evening as we had all been trying to connect for a while and hadn't seemed to be able to make it work.  Right away we could tell that the problems he was having were quite severe and after not being able to find a thermometer we sent my brother to the drugstore to buy one and some ginger gravol to try and help with the nausea dad was experiencing.
After finding that my dad had a temperature of 105.8 or 41C and having gone through a septic central line a couple of years ago I told him he had a choice - either I would take him to the hospital or we could call the ambulance.  We decided on ambulance. My brother and his girlfriend left to pick up their other kids and I followed the ambulance to the hospital.  Upon arrival, his fever had disappeared and after countless blood tests that showed nothing they decided to admit him and wait for blood cultures to come back.
By Monday the 10th they still had no idea what was happening.  I went up to see him that afternoon and had to wear all kinds of infection control clothing just in case, but everything was continuing to come back clear.

He was posting pictures of himself in the hospital on his facebook and making jokes

This one he captioned "Latest thing in leg wear. Eat your hearts out ladies"

Tuesday I texted to say I was on my way up and did he want anything.  He asked me not to come up as he had developed a cough and any amount of talking made him worse. I asked again throughout the day if he was sure he didn't want me to come up and he finally told me that he really was fine but if I was that worried about him I could come for a short visit.  I decided to take him at his word and told him I would be up the next day after work.

Well, I got a call from the hospital at 1:30 in the morning saying that he had gone into respiratory distress and that they had intubated him. In shock, I made my way to the ICU to see what in the world had happened. I immediately asked if he hadn't signed a DNR as I knew being intubated was among his worst nightmares. No DNR as they did not believe that he was in that serious of a condition when he was admitted. Thus began the long wait.... since he had not left anything in writing stating his wishes if something like this happened, I had no recourse but to wait while they struggled to find some kind of answer as to what had happened. The doctors were giving very different information to me and to my brother as my brother was very hopeful that he would be able to recover from what he viewed as a setback.  We finally managed to convince the ICU doctors to back off on his sedation in the hopes that he would regain consciousness and be able to tell us for himself what he wanted.

Finally, on the morning of the 16th he woke up. I was already on my way to the hospital for the day and when I got there he anxiously indicated through the help of his nurse (he couldn't talk as he was still intubated) that he had something to tell me and that he wanted my brother to be there and for him to bring his baby so my dad could see him.  He had already "talked" to the ICU doctor and they needed both my brother and I there... Mike got there as quickly as he could and with the doctor my dad indicated that he wanted the breathing tube removed. As euphemistically as humanly possible (gosh - these doctors need to learn to face death as an option) they asked him if he realised the probable outcome of his decision.  He indicated emphatically that yes, he realised, but wanted the tube removed.

They removed the tube and he immediately became more relaxed. He held the baby, the baby drooled all over him and he was extremely happy. The nurses had indicated to him that if he was feeling nervous or anxious that all he had to do was ask and they would offer medication for the anxiety as well as for pain.

After many injections of morphine and anti anxiety medication, he eventually lost consciousness again and they finally removed his oxygen mask and he passed away shortly thereafter with my brother and I beside him.

The final, official cause of death was alveolar hemorrhage - apparently not common in Scleroderma  but common in Lupus. So, basically, he bled out into his lungs and although they tried giving him pulse steroids, it obviously had no effect and in the end his Scleroderma got the best of him.

I know that he was an inspiration to many people (although he often lamented the lack of comments on his blog even though he could tell people were reading it).  We knew that the Scleroderma would eventually get him but the suddenness with which it came was a huge shock to all that knew him.  Even though he was optimistic and involved fully in life, this disease ravaged his body in a way that I have not seen in other people with the disease. I thought that I had best post an update to let those of you who knew him through this blog know what happened.

Love everyone every chance you get...

-Lisa

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.