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

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.

Walk in the Park

On June 8, 2013, London, Ontario held its 4th annual Walk/Run in the Park for Scleroderma. Although it threatened to rain we were fortunate that it stayed dry and it was a perfect day for a walk/run along the Thames.  Present total stands at $24 000 with a few more donations to come in. More pictures here.

New Recipe

In my research looking for alternatives to pasta with the traditional tomato sauce (not on diet), I discovered that fennel met the criteria for my current diet. The recipe included chile flakes/hot pepper which I didn't include, and a small amount of olive oil  which I also eliminated. Instead I pre-cooked the ingredients in a small amount f chicken broth.

The verdict- delicious. Admittedly I was a bit sceptical as I couldn't imagine anise (liquorice) flavoured spaghetti but the taste was very mild - perhaps because I went easy on the fennel seeds. In fact, if anything, the result was a little flat.  Perhaps  a little more parmesan, or mild spices.  Will definitely try this again but not before I try another recipe I found using carrots and ginger.

Generally speaking then, the diet is going extremely well. My stool is firm, having regular BM's and no longer am in fear of going out lest I have diarrhea. Better than I've been in months if not years. Life is good.

Oh yes, one item missing from my diet is snacks. Crackers are supposed to be okay but haven't had much luck with them.  Bought some pretzels today. Just had a few and they appear to have less salt than most which, I guess, isn't a bad thing.  Time will tell if they work for me.

January 18,2013 Update:
Made the fennell spaghetti again. Used Ghee to sauté ingredients and added some stir fry veggies.  Topped off with Asiago cheese.  Even better than the first time. Today I will finish it off and have added some cut up cooked ham to the mix.

Lesson Learned

This past weekend I thought I would try a little experiment and eat something not on my anti-diarrhea diet. I bought an organic type Kraft dinner.  Shouldn't be too risky I thought because pasta is allowed and cheese has never bothered me, even though my research indicated that all dairy products , with the exception of yogurt, should be avoided. I'll spare you the details and just say it was a big mistake. About two hours after eating my experiment I paid dearly. So back to the diet it was and I've been good all week.
I have also tried a less risky experiment. Had a panini sandwich today made with half a white kaiser roll, lean sliced organic roast beef and cheddar cheese. No butter or oil.  I know, the cheese was a risk, but like I said, I've never had a problem with it.  That was five hours ago and all's well. This morning I had plain yogurt with sliced banana and dried blueberries. Tasty and nutritious.  And I'm still hungry but will resist eating anything else this evening. Don't want to push my luck.

*Update: Thought I'd try another stab at fish baked with olive oil. Big mistake.  No diarrhea but pretty bad reflux. Won't do that again.  I don't believe I spoke about reflux being a consideration in my diet but it s almost as much as a factor as diarrhea.

Update #2:
Fish again, this time brushed with ghee, about a tsp, and baked in oven.  No reaction, so I think ghee might just be the answer to the oil dilemma.

GI Problems

After enjoying several months of eating on a daily basis with no real restrictions, I started having problems about a month ago with frequent diarrhea and vomiting. I can only guess that after indulging in a wide variety of foods my gut has a build up of undesirable flora causing my problems.  Last week I researched foods that are good to eat when diarrhea is a problem and consequently went out and bought some chicken broth, rice noodles, chicken breasts, bananas and applesauce. (BRAT diet- bananas, rice, applesauce & toast).  I was okay for a few days but then the problems returned.  I haven't eaten in a couple of days now, just a cup of tea each day, but will make another trip later today to replenish my supplies.  My shopping list contains the following:

applesauce
peppermint tea
dried blueberries
carrots
white rice
bananas
yogurt
potatoes
pasta (made w white flour)
rice noodles
white bread (for toast)
chicken breast for steaming/poaching
chicken broth
fish. also to steam/poach
white rice
rice milk
Bambu - a coffee substitute

All of the items on this list except the last one are purported to be helpful in easing or eliminating diarrhea.  The last one is just something I remembered from a few years back which I thought I would try as a drink I could enjoy since I miss my daily cup of coffee which I avoid due to its obvious negative effects on my bowels.

Won't be buying all of these today but will see what I can find.

Update: It's November 24 and I am pleased to report that my gut is doing much better. No diarrhea or vomiting at all this week and I am generally feeling much better. In fact, if anything, I may have been too successful as I am leaning towards constipation.  Guess I'll have to find a happy medium.
My diet this week has included the following foods:
bananas, yogurt, dried blueberries, mashed potatoes, rice milk, steamed fish, soy sauce, peppermint tea and Bambu made with rice milk, peppermint tea
I had some fish left from the other day so plan on reheating that along with some rice.
-put blueberries in yogurt
-mashed potatoes made with yogurt, no butter/margarine
-soy sauce to spice up the fish and rice a bit

Admittedly, it's a pretty bland diet but it's worth it and once I've been on it for a while, perhaps I can add in a few items not on the list above just to spice things up a bit.

Update #2: Another week has passed and all's well.  This week's diet included chicken breast poached in broth and then adding some rice to make a soup, applesauce, yogurt w blueberries and plain, lots of peppermint tea- very soothing, mashed potatoes, again with yogurt,, some gluten free crackers, and today *fish but baked with herbal olive oil and salt and pepper - a bit of a risk I know because of the olive oil but I think I'm going to get away with it.  So much tastier than poached or steamed.
*See following entry.

Hospital Stay

For the last few months I have had a chronic cough which had been progressively worsening until it got to the point where talking, standing up, any exertion at all, would cause me to start coughing which would go on for what seemed like forever. Other times I would just start coughing for no apparent reason.  A couple of weeks ago I began to notice blood in my phlegm.  I also found breathing difficult and was experiencing fevers and chills.  Me being me, I did nothing about it.
On Saturday, July 30 my son Michael showed up at my apartment with orders from his sister Lisa, not to leave until I agreed to go to the hospital.  After about an hour's coaxing, I agreed to go to emergency at Victoria Hospital.

Not long after our arrival (it was a slow day) I was told that I would be admitted due to my lung problems.  I'll spare you the details but it turns out I had sepsis and by Monday they had figured out which antibiotic I would be on.  My PICC line, the suspected source of the sepsis, was taken out, covered in puss, and a new temporary line was placed in my neck so that I could restart my TPN, finally.

I also may have had a touch of pneumonia but due to everything else going on the evidence was inconclusive.    My cough began to show signs of improvement after I'd received several shots of Lasix to get rid of the fluid on my lungs.  All in all it was quite a ride and I arrived home August 6.

I saw my rheumatologist this past Friday who scolded me for not going in to the hospital sooner and informed my that I ..."could have died."  She also said that my lungs have deteriorated in the past 6 months due to the scleroderma but that we will wait a bit before taking any further action to make sure my recent conditions are entirely cleared up.

So, thanks to my kids for insisting I go to hospital.  You may have saved my life.

Scleroderma Walk/Run 2011

Well, we did it. We pulled off another successful awareness/fund raiser event surpassing our goal of $20 000 and almost doubling last year's total of $11 000. And there's still the online donations and BBQ to be aded to the $21 000 we've already tallied.

Thanks to everyone who helped make it all worthwhile.

(Chris Trowell, Bill Durst & David Wahl performing at our concert)

Jill Martin, a member of the London branch of the SSO put this together so I've asked her permission to post an edited version here. Thanks Jill for your enthusiasm and support in this project.

THANK-YOU!!!

We want to Thank everyone for coming and helping Us expand the Awareness of Scleroderma. The money raised at this Concert will all go to the SSO. We want to thank the Bands for donating their time and talents and to the Eastside Bar and Grill for the free use of there facility and to all the Staff. And thanks to all that have helped with the Concert and bringing this idea into reality .I hoped that all left enjoying this event and also took with them with a much greater understanding of this disease SCLERODERMA. Most of all a bit more knowledge of what we as patients deal with.And that some might just be able to recognize someone with Scleroderma now and can now say YES I’ve heard and know something about that disease.

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LAUGHTER AND MUSIC. Laughter and music have been proven to help many Chronic Diseases. It raises your heart rate and can improver your immune system and lower blood pressure and even reduce pain .Most of all one gains a Positive Attitude. Laughing reduces stress and promotes relaxation. "Laughter Can The Best Medicine." Several Universities In the USA are doing studies/surreys on Laughter Therapy. Music can sooth the Beast." BUT It also may be able to help your body as well. Studies have shown that listening to Music We Enjoy actually can cause tissues in the inner lining of the blood vessels to dilate improving blood flow. Listening to Music you Enjoy can expand blood vessels by as much as 26% and in Contrast listening to Music you don’t like can make you anxious and cause blood vessels to shrink thus less blood flow.. Both Laughter and Music have been found to have similar effects on blood flow through the body. There was plenty of both at this our Concert . It now over and it went very well .We accomplished our goals of raising some very needed funds for SCLERODERMA and building some more awareness of this disease.........We had our trials and worries but in the end it all played out well.And building some more awareness of this disease and its problems for us as patients. It was well attended and all seemed to enjoy the whole event. There was a 10.00 cover charge that was totally donated to our cause.

The day was perfect---Weather wise-- The sun was out and many attendees enjoyed the outdoor patio as well as the cool air in the Bar .People began to arrive shortly after 3:00pm and that put all our minds at ease. As we all worried and wondered would there be anyone but us volunteers and band members etc that would show up???HEHEHE.We had just enough time to put the finishing touches on everything as the first band warmed up and got ready to Rock & Roll. We were having some very talented local bands play that day Bill Durst , Chris Trowell Band ,Robbie Antone's Blues Machine . A great addition came at the end of the evening with a big finale of all the bands playing together in what they call a JAM.It brought the house a rocking to everyone's delight.The bands donated their time and talent to us that day and all gave 110% From the sound system and all the bands voices and instruments the whole Bar sounded like a big fantastic party A HAPPENING EVENT!!!

The owner operator of The Eastside Bar and Grill also graciously donated the establishment for our event.The staff worked very hard all day and with a steady flow of ppl the staff was definitely kept busy serving drinks to those that were hot and thirsty and to those that were hungry from the yummy smells coming from the kitchen.I had some of their fries they were hot enough to burn you tongue and so crunchy that they were addictive to eat.Needless to say a whole basket of fries were finished quickly at our table.HEHEHE

We also had many prizes donated and had draws during the breaks. We had gift baskets of>>Fruit and Candles and Bath Assessories and Pet doggie and Kitty Treats....Gift Certificates from a Hairdresser...Bowling night at Fleetway....Kingsmills one of London's oldest Dept Stores ....Wine glasses....And several corn/oat heating bags....T shirts and Snow fleece tops....And Tickets from 102.3 BOB FM Radio to our Annual Blues Festival In The Park.

We also had three 50/50 draws.The door prize was a Framed Print (click to see) by Bill .It was a composite made up of bits and pieces from his Graffiti Series of London Ontario .

A SPECIAL ACCOLADE MUST BE GIVEN TO Bill's family and friends and all the great supporters he had behind him . They all worked endlessly and with great enthusiasm from the beginning stages of this idea all the way to its wonderful ending.

Dermatology Online Journal: Volume 8 Number 1

The article referenced here is the most comprehensive single article I have found on systemic scleroderma (SSC).  It is somewhat dated having ben written in 2002 but, I believe, most of the information is still relevant.  It also gets very technical in sections but much of it is very readable.  Hope this helps.

Spring Meeting

The London Group of the SSO had their spring meeting this past Saturday.  There were approximately 18 people in attendance including a couple of new members which was encouraging.  

Our speaker was Sally Bell, B SC. Pharm., Rheumatology Pharmacist, St Joseph's Hospital.  Sally gave a very informative talk on the various pharmaceuticals used in the treatment of Raynaud's and GERT, two of the more common manifestations occurring in scleroderma patients.  

I learned a lot but a couple of things stick out in my mind,  both of which might be helpful to readers of this blog so I'll share them.  The first concerns diet which is an important factor in conjunction with medications for controlling reflux.  The fact that surprised me though is that high fibre diets, something we hear about frequently these days, is not always a good idea for scleroderma patients, in fact it can be counter productive.  I did a little research and there is some evidence that a high fibre diet in patients with scleroderma can actually cause severe constipation or bowel obstruction.  So beware.

Another interesting discussion centred around calcinosis.  Someone brought up using salt water to ease the skin  eruptions which can accompany calcinosis and one of our members, Jill,  informed us that this has been very helpful in her case but that one should avoid using table salt containing iodine which can further irritate the area.  Instead, she recommends pickling salt which has no iodine.  She suggested using approximately one tablespoon of pickling salt per gallon of water.  So there you have it.

Our next meeting will be on September  26, 2009 at which time we will be hosting the AGM of the SSO.  Dr. Janet Pope will be our speaker.

 

The Benefits of Physiotherapy

Today, Thursday, is physio day.  For the past three years I have been going to St. Joseph's hospital here in London for a half hour physio session.  This is supplemented by having my support worker repeat the stretches in my home, also once a week.  

There is evidence that regular physio sessions may be able to maintain the range of motion scleroderma patients have in their joints and, in my case at least, it seems to be working.  Twice a year, usually in the spring and fall, my physiotherapist measures the range of motion in my major joints and overall results indicate no significant change.  Keep in mind that these measurements are not terribly accurate so there is some allowance for measurement error which is why I use the phrase 'no significant change' as there are minor variances from time to time.

Of course, regular exercise is important as well in helping maintain mobility.  But don't forget to check with your doctor and physiotherapist if you have one before beginning a program. 

Time to go catch my ride so will close for now.  Have a great day.

Meditation and Scleroderma

This could just as well be titled Meditation and ______ (pick a disease) because meditation has been proven to be effective in the treatment of any number of chronic diseases, arthritis  being the most studied.  Jon Kabat-Zin is undoubtedly the best known researcher in this field and has authored several books on the topic as well as founding The Center For Mindfulness at the University of Massachusetts.

On a more personal level, I have been meditating for about twelve years and I am convinced that this practice has been instrumental on both the psychological and physical levels.  Firstly, it has been the most important tool I have for stress reduction.  Of course I'm stating the obvious when I say that having a chronic disease such as scleroderma can be extremely stressful.  Meditation can help by making you more aware of your emotions.  The more you meditate the more you are able to see negative emotions as soon as they arise and, like the proverbial  snowball rolling down the hill, it's easier to stop emotions at the early stages before they grow into something that's harder and harder to control.  Meditation accomplishes this through the practice of watching and quieting the mind.  There's nothing mysterious or mystical about it. At the simplest level, it's sitting quietly, paying attention to the breath, watching distractions, both internal and external, as they arise, acknowledging them and then going back to watching the breath.  This ' watching of the mind ' make us more aware of our emotions and how they operate and we thus gain more control over them.  

As a concrete example, I am constantly dropping things on the floor because of poor mobility, strength and grip in my hands.  This can be doubly frustrating because I am unable to bend over to pick anything up off the floor which means every time I drop something I have to go get my reacher to pick it up.  Now this often becomes frustrating with the potential to make me angry which, in turn,  could lead to a high level of stress.  But it doesn't.  And that's because I am able to spot the anger at that very first instant just as it begins to arise and before it gets any worse, I simply acknowledge it, stopping it in its tracks before it takes me over.   Without my meditation practice I am absolutely certain that all the hurdles I face each day would make my life much more unpleasant.  

It's also common knowledge that stress contributes to the level of pain that we experience.  Meditation, as noted above, can decrease stress and that means less pain.  It's as simple as that. 

Again, based on my own experience, I believe that it may be possible to directly influence things like Reynaud's.  Initially my Reynaud's was quite painful and I would spend several hours a day holding onto one of those microwavable heat bags to keep my hands warm and ease the pain.  But then I started a visualization practice, a form of meditation, where I pictured the blood flowing through the vessels in my hands and after I'd practiced this for some time, I can't be more specific than that I'm afraid, my Reynaud's symptoms started to lessen to the point where I no longer needed the heating pads.  That was over three years ago now and nothing has changed.  Of course this is totally anecdotal and not proof by any means that it was my visualization practice which caused of the lessening of my symptoms.  On the other hand, it certainly didn't do any harm and I continue to use a modified version of this practice for other symptoms.

Sorry for being so long winded here but, as is probably apparent, I truly believe that meditation can compliment the other treatment options available to individuals with a chronic disease and the only side effects are that you will be a happier person for it.   If you've never tried it, please consider giving it a chance.  You've nothing to lose.  Here's a link to some simple guidelines for establishing a meditation practice.

My Other Hobby

In the very early stages of Scleroderma, my hands were one of the first things to be affected. In fact it was my hands which, when viewed by a rheumatologist on my first visit, determined my diagnosis within 30 seconds of my arrival. And within six months or so they had reached the stage in which they remain to this day. I would estimate that I have lost about 90 % of the movement in my finger joints and my hands are locked in a half fist position. This is all fairly typical of the disease so I'll say no more.

One result of all this was that very early on I got rid of my two guitars and the one amplifier I owned because I was convinced that I would never play again. I was never really very good at it anyway but did find it a good way to relax.

Last May (2008) I started thinking about how much I missed playing the guitar and wondered if there wasn't some way that I could take it up again with the result that I started doing some research on the internet. Without going into the entire proecess let me just say that by mid June I took delivery of a 1960 something

Japanese made lap steel I'd bought on ebay. My son-in-law brought

over a small practice amp, restrung the guitar for me, plugged it in and I haven't looked back since. The beauty of this setup is that by using an open tuning, placing a slide on my left thumb and a pick on my right I can make this thing wail and it doesn't sound half bad. In fact I can now play by ear and improvise, something which I could never do before.

In July I bought my own amp, a Fender G-DEC Jr and last month I bought a second guitar, this one a 1950's something National lap steel, the ones with the killer pickups. This one needs a minor repair before it is playable but I hope to get that taken care of in the new year, as soon as we get a reasonably warm day with clear sidewalks so I can make the three block trip to the guitar shop. And why, you may ask, do I need two guitars? Well, the plan is to leave one in my son-in-law's music room so I can jam with my daughter on her mandolin and also my son-in-law and his musician friends. The other guitar will remain in my apartment for practicing. Now if I just had one of those old vintage tube amps I could really get that killer blues tone going. Been watching them on ebay but no deals to date.

And what's to be learned from all this? Well, simply that one doesn't necessarily have to give up the things they love if they keep an open mind and are willing to adapt to new ways of doing things. And this is true of so much of my life now. It's all about maintaining a positive attitude and finding new ways of doing things.

Update

I now have a third guitar, a post war Rickenbacher T-Logo, and a 1948 Oahu amp. The only problem is my neighbours complained about the noise to the building superintendent so now I have to turn down the volume. Not near as much fun but hey I'm still having a blast. Oh yeah, I'm also looking for an acoustic lap steel so I won't be limited to playing where there's an electrical outlet.

Yesterday I said I would talk more about my hobbies and how scleroderma has influenced them so today it's photography.  

Back in the late seventies when I dragged my family off to Iqaluit on Baffin Island to begin my teaching career I bought my first SLR camera and it served me well but I eventually lost interest in photography and brought it out only rarely, like when my son and I took our yearly canoe trips into Algonquin Park.

In 2002 I bought a digital camera as a retirement gift to myself which I used to document my year and a half in Bancroft while I pursued my back-to-nature lifestyle.  That camera died a couple of years later so I bought yet another point and shoot but then, shortly afterwards, I started getting more serious about photography and took the plunge buying a digital SLR.  By this time my hands were pretty much frozen into a half fist with perhaps 10% of the movement remaining.  I sometimes joke that I've taken to  intentionally dropping everything on the floor since it's a given that I will drop half the stuff I pick up anyway.  By intentionally dropping things, there are fewer surprises and at least I will have some control over where and how hard the objects hit the floor.  And so, when researching DSLR's my first consideration became size and weight, the smaller and lighter the better.  Didn't want to be dropping my $1000+ toy now did I?

The result was that I bought a Canon Digital Rebel, the smallest and lightest digital SLR out there.  Later on I also purchased the smallest lightest lens available.  There are times when I lust after bigger more powerful cameras, especially when I see my friends using theirs but then I remind myself that I have to be practical and stay with something that I can actually use.  And of course my present camera really is just fine - you can judge for yourself by checking out my photoblog - and I'm quite happy with the results.

The biggest problem I have now is that my season for photography is too short.  When temperatures begin to drop to the mid teens Raynaud's gets in the way 'cause its pretty much impossible to take photographs with these big puffy mitts I have to wear.  Guess I'll have to start doing more indoor stuff even though it's the outdoors I really thrive on.  

Limitations aside, photography has provided me with endless hours of pleasure.  And then there's the Photoshop end of it which I enjoy as much as, if not more than, the actual taking of pictures.  When I'm releasing the shutter or testing my creative limitations in the digital dark room, I forget everything else and life is good.  Doesn't get much better than that.

Welcome

Based on my experience with my photoblog, I know how long it can take to get people visiting so I may be writing this for myself. With that in mind, I'll keep it short for now.  I'll just say that the onset of scleroderma meant that I had to make some huge changes to my lifestyle (see My Story under Links) but in the 4 1/2 years since that time I have taken up new hobbies and made adjustments to the way I enjoyed old ones with the result that I am able to enjoy life to the fullest despite the many physical limitations that have come about due to scleroderma.  I will go into these in more detail as time passes but I just wanted to make my point that life is good and it is so because of the choices I have made.