Living With Scleroderma

Doctors' Visits

2012-01-25T17:17:00.001-05:00

Wow, just noticed that my last post here was October 3. Where does the time go? I probably would have written sooner but I ended up cancelling a couple of appointments in November and December due to diarrhea. And that pretty much sums up the last few months where my main concern has been exactly that. Just recently I have made some progress using a combination of cephalex and Immodium.

I have had a couple of flare ups so had my rheumatologist call in a prescription for prednisone which, as in the past, proved to be very effective. And that brings me to my visit yesterday. First of all my rheumatologist was delighted with my weight which now stands at 131 pounds. I have not weighed this much in at least six years so, needless to say, I too am overjoyed. Thank you TPN. Also she wrote me a prescription for 200 prednisone with 3 refills, enough to last me a very long time. I will continue to reserve it for those times when the pain is at a peak.

Today I saw my GI doctor. Pretty uneventful except that, again, the dietician was pretty happy with my weight gain. I also asked to have my J-tube removed which, much to my surprise, he did right there on the spot. Only problem is that some fluids seeped out the hole where the tube had been and man did it stink. My tpn has now been reduced to 6 days a week. And that's about it for my doctors' visits.

So, generally, things are going pretty well. The last couple of days the pain has been slowly worsening so must get my prescription to the pharmacy so I'll have some prednisone on hand.

Prednisone

2011-10-03T17:29:00.002-04:00

Just finishing up a round of prednisone to manage pain which had gotten fairly intense a couple of weeks ago. As has been the case in the past, I started with 25 mg for two days and then reduced the dosage by 5 mg. every two days until I reached 5mg. for the final two days. This really is an effective treatment in that it begins to work within just a few hours and reduces the pain to a point where it is almost negligible. It also increases my appetite, a huge plus for me. On the negative side I had trouble getting to sleep the first couple of nights but have been fine since so it's not a big deal really. My face also gets a little puffy looking which, for me, is, again, a positive. Too bad prednisone is such a nasty drug as far as potential long term side effects go 'cause it sure makes life much more enjoyable when I'm on it.

Not sure if it's due to the prednisone or just a coincidence but when I started taking it my cough stopped and I am not spitting up phlegm like I was.

So, in summary, I am feeling great.
It's probably worth mentioning that I have found it necessary to continue to take my NSAID while I'm on prednisone. I ran out a couple of days ago and have noticed an increase in joint pain.

Hospital Stay

2011-08-16T16:21:00.001-04:00

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

2011-06-11T18:56:00.003-04:00

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.

2011-06-01T13:28:00.000-04:00

Click to enlarge

New Developments

2011-05-27T21:38:00.005-04:00

This past Wednesday I went in for a CT scan ordered by my rheumatologist because a chest x-ray from a couple of weeks ago showed a "nodule on the right lobe of my lungs". I didn't have an opportunity to ask for any more information than that so I am not sure how serious it was. Just waiting to hear the results now.

Update: Dr.'s office called yesterday. All clear on the CT scan. Great news.

Today I had what is to be the first of three iron infusions. The entire procedure took about three hours and was given through my picc line. After I was finished my Dr. showed up and showed me just how badly I needed this. He pointed out that normal iron levels are between 30 and 300. Mine was 4. Infusion number 2 will be in two weeks after which, he explained, I would start feeling much better which I take to mean more energy. In fact, I already feel a small difference in my energy level after today's infusion.

Two weeks tomorrow is our Walk/Run for Scleroderma. Time to start praying for good weather.

Update

2011-04-28T15:26:00.004-04:00

It's been a while. Lots on my mind lately I guess.

GI Issues

Still at 110 pounds. I recently saw my GI doctor and he agreed that my lack of appetite and bloated feeling indicate that the two antibiotics I've been taking are no longer working. He prescribed erythromicin which my pharmacist says is no longer available and Cholestyramine, a powder which I mix with water and drink once a day. Hopefully this will help clean out my gut and stop the daily bouts of diarrhea. It's now two weeks later and it seems to be helping. I have been eating a little bit each day and the diarrhea is gone. The dietician also aded another 360 calories/day to my TPN bring the total to 2160. After a week, no weight gain but that's pushing it.

The OT made up a gadget for my camera which enables me to use my thumb as my shutter finger without fear of dropping the camera. Works like a charm.

Walk/Run in the Park for Scleroderma

It's all coming together and there seems to be a lot of interest so I am optimistic that we'll reach our goal of $20 000.

Been a While

2011-03-12T12:44:00.002-05:00

TPN

Rate of weight gain has slowed down considerably. Since my last entry, I have only gained 5 pounds which places my current weight at 110 pounds. I am also eating less due to a decrease in appetite and some bloating. The reason, I suspect, is that the antibiotics have lost some of their effectiveness in eliminating the undesirable flora in my gut. I don't see my GI doctor again until March 31 but as long as I continue to gain some weight I'm satisfied with my progress. I am concerned that this may affect he plan t begin weaning me off the TPN. I was going to try a feed via my G-J tube the other day but then realized that I didn't have any bags for the formula so had to put that on hold until I can get some bags next week.

Rheumatologist Visit

Saw Dr. Pope last week. The main thing to come out of that meeting was that I have switched from Arthrotec to Tiaprofenic acid for joint pain. So far I don't see any significant improvement but these things can take a while to kick in so must be patient.

Occupational Therapist

Have also been seeing an OT to improve function of right hand after the amputation of my index finger. She made a brace, the purpose of which is to move my middle finger slightly closer to my thumb. I wear it for a few hours each day and it is helping. On my next visit I will be taking my camera with me to see if we can figure out a way for me to compensate for the loss of my 'shutter finger'. Currently, I find it extremely awkward to hold the camera and hit the shutter release at the same time.

Spring Meeting of the SSO

Dr. Pope will be speaking at our spring meeting on April 9. Contact me for more information.

Walk/Run in the Park for Scleroderma

Our committee will be holding its second meeting on Saturday March 19.

GI Doctor visit today

2011-01-20T19:27:00.003-05:00

It was a short visit primarily because everything is going well. My weight is now 105 pounds, that's another pound since last Friday, which puts me at 105 or 15 pounds since starting TPN. It was suggested that we go for another two months and then start weening me off TPN and back on to the G-J tube which has less risk than the former. That would put me in the neighbourhood of 120 pounds and I can certainly live with that. I may even be able to put some more weight on after I''m back on the g-j tube.

Dr. Howard attributes my ability to take in more food orally with the fact that I am taking the antibiotics, metronidazole and ciprofloxacin on a continuous basis for three and four days a week respectively. This has apparently stopped the build up of harmful flora in my gut and thus no bloating and fewer problems with bm's.

I must try a feed through my g-j tube one day soon to make sure I don't go back to the bloating problems.

That's Better

2011-01-14T12:49:00.002-05:00

Last week I was a little disappointed that I only gained one pound but, the good news is, I made up for it this week by gaining three. Up to 104 pounds total.

On a totally different topic, I was reminded of a benefit of being in a wheelchair this morning when I purchased tickets for my daughter and I to see Sarah McLachlan in March. There are only two accessible seats on the floor and they are both in the front row so that's where we'll be. Really looking forward to this one.

100 Pounds

2010-12-31T18:20:00.004-05:00

Well, it took an extra week but I weighed in at 100 pounds this morning. I have been eating lots of turkey along with all the trimmings but it looks like it hasn't done anything to increase my weight, no surprise really, but I have enjoyed the experience of eating all that great food nonetheless. I am seriously considering going back to drinking an Ensure/Boost every day, something I did up until the time I started TPN.

On another note, I fell the other night as I was on my way to bed. My IV stand which has four wheels that all want to go in different directions at the same time, was the culprit that tripped me up. Fortunately I had my cell phone in my pocket so was able to call my daughter as I lay on the floor bleeding profusely from a couple of gashes on my head and she and her partner were here in five minutes. Also scraped up a knee and my shins pretty badly.

My inability to get up after a fall does give me cause for concern. If I hadn't had my phone I could have lain there all night and that prospect scares the hell out of me. I am considering getting one of those alarms that I can wear around my neck when at home and will probably look into it next week.

And finally, my winter chair is in the shop with a broken gearbox. Repairs are complicated by the fact that the chair has been altered to fit my snow tires but I have enlisted the help of Joe from Tetra who has generously agreed to help get it up and running again.

98 and Counting

2010-12-19T10:03:00.004-05:00

The title says it all really. This past Friday, my weighing in day, I was 98 pounds which means that I have gained 8 pounds since going on TPN. It also means that, as predicted, for the past three weeks I have gained 2 pounds /week. Should the trend continue, that means 100 pounds for Christmas and I can't think of a better present than that.

I have spoken to my dietician a couple of times since last writing here and everything looks good from her end as well. My weekly blood work indicates no problems so as long as everything continues in this vein I can start doing it monthly in the new year.

Oral intake of food continues to be a positive experience so I am really looking forward to Christmas dinner, twice, this year.

And on that note I'll sign off by wishing everyone a very happy holiday season. whether it be Christmas or Hanukah or just a time to spend with family and friends. And all the best in the new year.

Two Weeks on TPN

2010-11-19T10:11:00.002-05:00

Well, it's been two full weeks that I've been on TPN and it continues to be a very positive experience. The best part is that I am eating real food every day without any ill effects - no reflux, no diarrhea - and that alone has boosted my spirits. I also have more energy to the point that, a couple of days ago, I went on a cleaning frenzy and got rid of all the clutter that had accumulated around the place. feels really great to have that out of the way finally.

Yesterday the dietitian in charge of making up my formula called to see how things are going. I asked about the lack of weight gain and she said that was as she suspected because she had intentionally kept the calorie count down (1600 cal.) because she didn't want to overwhelm my body to start off. The next batch of formula will have an additional 300 cal/day which should mean that I will gain an average of 2 pounds/week. Sounds good to me.

It's All Good

2010-11-14T15:27:00.003-05:00

First of all, my hand, although I am experiencing some pain, is doing well. No pain killers for well over a week now. Yesterday my hand slipped while turning on the stove and I banged it and that hurt like hell but the pain subsided pretty quickly so no real harm done. I'll just take it as a warning to be more careful in the future. On November 26th I will be seeing an OT to see if we can do something to make my middle finger more functional. It is currently displaced away from the thumb so I would like to see if it can be helped to move back more towards the thumb so my hand will be more useful.

TPN continues to go well also. I decided that I would weigh myself each Friday, thereby avoiding potential disappointment by checking my weight every day and seeing no progress. Well, I was still disappointed this past Friday when, after one week, there was no significant weight gain. Perhaps I'm expecting too much in such a short period. I can't be entirely certain about the accuracy of my bathroom scales but I may have gained a pound, possibly two, in which case I would be delighted. At worst, I have stayed the same which I can also live with. I should also mention that I have not, as suggested by my dietician, done any G-J tube feeds in this time period, nor have I been drinking boost every day. The reason is that I am simply enjoying not feeling bloated all the time and, even better, I am taking food orally on a regular basis and my bowels are handling it just fine. I've even stopped taking the pariet and have not had a single bout of reflux. This makes me think that it may have been my formula which was causing the problems previously.

Need I point out how much I am enjoying eating real food again? Today, for example, I have had scalloped potatoes and meat loaf which my daughter brought over. For dessert I had Oh Henry bar pieces and I have also had tea, hot chocolate and just finished a coffee. And I am still hungry but will resist eating more as I don't want to overdue it. A couple of weeks ago this would have been unthinkable.

So, in summary, I am feeling much more positive about life again and that's got to be a good thing.

Update

2010-11-03T09:11:00.004-04:00

The past couple of weeks have been very busy. The amputation site is healing very nicely and I suspect that stitches will be removed when I visit the hand surgeon tomorrow. The pain is best described as intermittent and varying but overall mild to moderate. Some days it is sharp and stabbing and others a dull throb but always isolated to the stump and phantom finger.

Today, with our third class, my daughter and I finish our training sessions for TPN . The PICC line was inserted in my upper left arm yesterday, a quick and painless procedure. Tomorrow my supplies arrive and I begin my TPN feed and before you know it everyone will be calling me chubby cheeks.

Update: It's now Friday. First feed went well. I even woke up this morning feeling hungry and that has not happened in a very long time. Had a pudding cup and an Ensure which pretty much filled me up.

I was right about the stitches, they were removed yesterday. The hand surgeon was very pleased with the way my hand has healed as am I. Here's a pic if you're interested.

Post Op

2010-10-20T13:18:00.002-04:00

The surgery went very well. Everyone at St. Joe's was amazing. Used a nerve block, actually two, and only needed a little over an hour of the two hour scheduled. Had a decent night's sleep getting up once for a percocet which kept the pain to a dull throb. Home care nurse came just before noon to change the dressing which gave us an opportunity to snap this picture. My son Mike stayed the night and did a great job of looking after me.

SI have an appointment to see the hand surgeon tomorrow.

And finally, a big thank you to Bea for helping me get through the day.

Surgery & GI Developments

2010-10-16T10:07:00.004-04:00

Had a 3 hour pre-op meeting yesterday. The only potential problem centred around the type of anesthetic that would be used but after much debate and a consultation or two they decided to go with a local rather than a general. Phew, for a while there I was quite concerned because they wanted me to shave my moustache which I've had for pretty much my entire adult life. So, surgery is a go for Tuesday. Not looking forward to it at all.

On Thursday I saw my GI doctor and the result of that visit is that I will probably be going on TPN although we are trying a double course of antibiotics first as one last stab at cleaning out my gut. In order to be prepared for the TPN, my daughter and I will be attending training sessions in a couple of weeks. My daughter will be the one to hook me up at night and unhook me in the morning as I won't be able to do it myself. We will probably use a PICC line instead of going into the chest directly. The plan is to try TPN for a couple of months to put some weight on, 20 pounds or so, and then go back to the tube feed. but it's all pretty much up in the air for now so we'll just have to wait and see what develops.

Add this to the surgery and I'm feeing a little overwhelmed right now but am trying to remind myself to just take one thing at a time. In the meantime, it's a beautiful fall day so I'm going to take my dog for a walk and enjoy the sunshine.

Coping Well

2010-10-09T13:14:00.005-04:00

The pain is now under control but I'm still coming to terms with the upcoming amputation. I am able to use my finger at present and it seems odd that, in a week and a half, it won't be there. I mean, it's functional and I look at it and it even looks fine, well, that part not covered by bandages anyway, and I just can't imagine it being gone. And then I was clipping my fingernails the other day and I realized it would be the last time I clip that one. Too weird.

Just some random thoughts on what I'm feeling right now. It'll all be fine I know. If you are interested in seeing the wound, I have posted an image on Flickr. Beware, it's not pretty.

Amputation

2010-10-06T18:20:00.003-04:00

Yup, that's right, amputation was the verdict when I saw the hand surgeon today. As soon as he unwrapped my hand he matter-of-factly stated "I can't do anything with that. It [right index finger] will have to be amputated." I asked if he was serious but of course, he was. The bone is open to the air and is surrounded by cartilage and tendons - all the skin is gone. Not a pretty sight believe me. If all goes well over the next two weeks, I am slated for surgery on Tuesday, October 19. Guess I'll have to learn a new method for tripping the shutter on a camera. Shouldn't affect my guitar playing though. As for every day activities, well we'll just have to wait and see.

For now I just have to live with the pain. The doctor used some surgical scissors to remove tissue from the wound today and just now, 6 hours later it is settling down some.

Calcinosis Infection

2010-10-03T12:18:00.005-04:00

I know my original intention was to keep this blog positive but lately that has been difficult. And now I have a new problem to report. the basal knuckle of the index finger on my right hand has become infected and it is, to put it lightly, making my life difficult. A week ago today, last Sunday evening, I noticed that the knuckle in question was red and swollen and it was causing me some discomfort. I progressively grew worse such that by Wednesday I could no longer put off a visit to urgent care at a nearby hospital. Over the next three days I was given antibiotics by IV, saw a hand surgeon who switched me over to oral antibiotics and am now receiving daily visits from a nurse who changes the dressing on my now draining, very raw looking and painful knuckle. (Of course getting the IV started was also a major challenge just to add to the discomfort.)

I have calcinosis in said knuckle and apparently some bacteria have made their way into the area through a small opening in the skin caused by the calcinosis which, in turn, caused the infection.

So, there you have it, yet another complication from scleroderma.

Fall Meeting

2010-09-22T12:38:00.002-04:00

The fall meeting of the London group of the Scleroderma society of Ontario will be meeting on Saturday, October 23 from 2:00 to 4:00 at the Good Shepherd Lutheran Church, 552 Fanshawe Rd. E, London, Ontario.

1 Week Post Prednisone

2010-08-27T21:13:00.001-04:00

The week on prednisone was great. As the dosage was decreased, I noticed the return of some minor pain but things were still pretty good. It's now been a week and a day since I took the final dose and I'm doing not too badly. If my pain was at a 10 before prednisone then I went to about a 1 as soon as I started it. I'd say I'm now alternating between a 3 and a 4, depending on the day and I can live with that. Trouble is I realized that being at 1 was a possibility and I wouldn't mind going there again. But at what price? Prednisone taken on a long term basis can be pretty nasty so if there's an alternative I like to know.

I tried to call my rheumatologist last week to discuss the future but she was on holidays and will be back this coming Monday. I'll call her then to see if I can get in to talk to her.

Did I Mention I also have RA?

2010-08-14T13:33:00.002-04:00

It just occurred to me that I may never have pointed out anywhere on here that I have rheumatoid arthritis as well as scleroderma. The reason I haven't mentioned it is that it had pretty much gone into remission. When I started having more pain about a year ago I put it down to scleroderma but am now convinced that the RA has returned. I bring this up now because of the prednisone which is not normally used for scleroderma and should, in fact, be avoided as it can cause renal failure but since I have no apparent renal involvement I guess I'm okay to take it.

Anyway, I am happy to report that the prednisone is doing its job and that I am virtually pain free. This is now day three and I feel great, have been sleeping better than I have in months, and when I finish with this blog entry, I am going to grab my guitar and give it a whirl. Yeehaw, life is good again.

Prednisone

2010-08-12T21:00:00.002-04:00

Well, the title says it all. I phoned my doctor's office this past Monday and they got back to me today. Dr. Pope wants me to go on Prednisone. Can't say I'm very happy about it but then if it will help I'm about ready to try anything right now.

The dosage will be 20 mg for two days, 15 mg for the next two, then 10, then 5 and that's it. I started this afternoon and after about three hours started feeling better - less pain. It's now 6 hours later and I notice a significant difference in the pain level. I feel very mild nausea but not enough to really bother me. A pretty good trade off I'd say.

So, we'll see what the next few days bring but I am encouraged by the quick results.

August Already!

2010-08-07T21:07:00.004-04:00

It's hard to believe that July has come and gone as has the first week of August. I wish I could say that it's been a great summer but GI issues and pain have put a damper on things.

There have been two occasions in the last couple of weeks when I've had to stop my feed due to nausea. One, I'm reasonably sure, was due to something I ate so it's my own fault. I really don't like to skip feeds 'cause I lose weight so easily and then have to fight like hell to get it back. I'm still about 100 pounds, dressed, so the consequences haven't been too severe. I'm hoping it's just a temporary thing and that I can get back on track which, at present, is still four bags of Vital HN per day.

And then there's the pain. It's been going on for a year now but is progressively worsening despite taking Arthrotec, and Celebrex before that. A week ago I forgot to order my Arthrotec so had to go one night without it and at least I know now that it works because it was a terrible night with extreme pain and virtually no sleep. But it's just not enough. My rheumatologist has been on holidays but will be back on Monday so I will be calling to see if I can get an appointment to adjust my meds. As an indication of how bad the pain is, I have spent about an hour on the guitar, in total, all summer. When I was feeling well, it wasn't unusual for me to spend two hours or more a day, every day. But now after fifteen minutes, when I'm just getting warmed up, I have to stop due to the pain. So, something has to be done 'cause I derived a great deal of pleasure from playing. My other hobby, photography, is also suffering.

Well, enough said. I really don't like to gripe here but I also want to present a realistic picture of what it's like living with scleroderma so I hope you, dear reader, will forgive me this little rant and hopefully my rheumatologist will have some answers for me when I see her.

GI Update

2010-07-07T20:04:00.002-04:00

Been a while since I posted here so thought I'd share how I'm doing with the new formula, Vital HN. There's not a lot to say really except that I'm currently managing 4 bags or 1200 litres/day. I do two overnight at 65 ml/hr which gives me about 8 hours. The other two I do throughout the day at around 85 ml/hr. I've tried 90 ml a couple of times but started to feel some discomfort so backed off. My goal for now is to add one more bag throughout the day but unless I can get the speed up that will be difficult if I want to go out at all. I've also been drinking a bottle of Ensure Plus each day which brings me up to 1555 calories a day. Will keep working on it. My weight, incidentally, seems to be staying the same at just around 100 pounds.

The London Group of the SSO lost a long standing member, Jill Martin, a couple of weeks ago. From my understanding it was GI issues which ended her long fight with scleroderma. We'll miss her.

New G-J Tube

2010-06-15T17:51:00.002-04:00

Went in to get my tube replaced today. The first reaction the prep people had once they got me on the table was surprise at the age of my old tube. Seems they haven't made them like that for quite some time. When I told them I'd had it for over two years, I was told that normal practice is to replace them every eight months. Who knew? Consequently, as they were inserting the new one, I was informed that they would book me an appointment in eight months for the next one. The good news is the procedure is only mildly uncomfortable and it didn't even require the local anesthetic which they used for the original. And no nasal tube either.

The new tube is different in that there's no shut off valve on this one which means that, when flushing, I'll have to be quick getting the syringe on or it could get a wee bit messy. Shouldn't be a problem.

No TPN - Yet

2010-06-13T10:09:00.003-04:00

On May 24 I wrote that I would be calling my GI doctor about my recent weight loss and my inability to get a full feed into me. Well, I did call and I saw him twice in the next week. As a result of my visits I will be trying yet another formula, Vital HN. According to the dietician who works with the doctor, this should be easier for my body to absorb. the drawback is that this product comes in powder form so I will have to mix it up one cup at a time. It also has a hang life of only six hours which means no more overnight feeds. So it's a matter of convenience really but if it works it should be worth the extra effort.

It also means using a new type of bag and tube, they arrived Friday. And the Vital is now on backorder so I haven't received it yet and have been continuing to use the Peptamen 1.5 in the interim.

It's also worth mentioning that the doctor prescribed Ciproflaxacin, an antibiotic, to clean out my gut. This is to replace the erythromycin which we had used previously. I am happy to report that the cipro worked from day 1 - no more diarrhea and I am taking some food by mouth again because I actually feel hungry. It has also allowed me to venture out of the apartment more because I am no longer afraid of having an accident. Put all this together and I can say that I am enjoying life again. Yeehaw.

Oh, one more thing. In a couple of days I will be going in to have my G-J tube replaced. A couple of months ago it developed a small crack where the hardware joins the tube. I patched it, first with duct tape, and then with duo-derm, but it still leaks occasionally so I'll be happy to get that taken care of.

Walk a Huge Success

2010-06-11T20:23:00.008-04:00

Dr. Janet Pope cutting the ribbon to begin the walk.

Well it's been almost a week since the walk and concert, the dust has settled and we just got our final tally today which stands at $13 163.49. Because this was the first walk we have organized, we really had no idea how it would go but, needless to say, this far exceeded any expectations we may have had. A great deal of the credit and a huge thank you goes out to our members, especially Angela Lavis and Stephanie Doyle and their families who came on board part way through the process. Their enthusiasm and energy made all the difference.

On a not so happy note, I just received word this evening that my brother, who also has scleroderma, died today. A timely and poignant reminder that we need a cure for this disease.

Update

2010-05-24T21:47:00.002-04:00

Well, the walk and concert are fast approaching. As one indication of how much work it has been, I have approximately 250 emails in my Walk in the Park folder. I.m not complaining though. It's been fun with a few minor glitches yes, but everything's looking good for a successful walk and concert. Now we start watching the long term weather forecasts and hoping for a good day. So far it looks promising.

On a not so positive note, I am losing weight due to an inability to get my feeds into me. I've tried everything I can think of but I continue to lose weight so will call my GI doctor tomorrow to see if I can get in to see him some time soon. I have an appointment for the end of July but when I weighed myself today I found I'm just under 100 pounds so no more procrastinating. I suppose I've been postponing this call because I'm afraid I may have to go on TPN (Total Parenteral Nutrition) and I really don't want to go there. We'll see what comes of y call tomorrow.

Spring Meeting 2010

2010-04-19T19:47:00.002-04:00

We will be holding our spring meeting this Saturday, April 24 from 2-4 at Good Shepherd Lutheran Church, 522 Fanshawe Road East. Our speaker will be Sarah Mclean B. SC. PH. D. candidate (cancer & fibrosis). The topic of her speech will be Perspectives on Cellular Research in Scleroderma.

Scleroderma Concert

2010-03-31T18:29:00.000-04:00

And here's the concert poster. No explanation needed.

Busy Times

2010-03-28T20:50:00.005-04:00

Bea and I have been busy organizing our first Walk in the Park for Scleroderma these past few weeks. My tasks have been mostly computer related - writing letters, making posters and drawing up pledge sheets. We are also doing the concert again and I started working on that poster today as well. The bands aren't finalized yet so I won't finish it until everyone is confirmed.

Details for the walk are as follows:

Gibbons Park, London, Ontario on Saturday June 5 from 10:00 - 2:00

and the concert:

Same day at the

East Side Bar & Grill

750 Hamilton Road, London

3:00 - 7:30

Tickets at the door $10.00 or a donation of $10.00 or more at the walk.

Contact me for pledge sheets and more details.

Spring

2010-03-20T16:00:00.003-04:00

(click to enlarge)

As of 1:32 this afternoon it is officially spring. Actually the last two weeks have really felt like spring with record breaking warm temperatures and mostly clear skies. Now, I don't know if it's coincidence or not but my aching joints are not so achey these days. I have been feeling much better in general as a matter of fact, even playing the guitar more.

Found this mural the other day inside a mall and thought it was a good reflection of how I felt. Took it with my new camera, an Olympus Pen which I bought because it is even smaller than my Canon Rebel which I just sold yesterday. It also has live view on the back display panel so I don't have to lift the camera to eye level which has been a problem these past several months.

Six Years Since Diagnosis

2010-02-21T21:28:00.003-05:00

It's been unseasonably warm this weekend, just above freezing, sunny with calm winds so I've gone out for coffee both days. Tonight we are to get a significant snowfall with snow all week but not enough to be a problem. Today's weather put me in a gardening mood so I transplanted and repotted a few of the plants I've been neglecting. Felt good to get my hands dirty.

Just realized tonight that it was February of '04 that I was told that I had scleroderma. As I've stated elsewhere, the first couple of years were the worst as far as progression goes. Range of motion in my joints remained pretty much unchanged. The next four have been about my weight. As I sit here writing this the pain in my knee serves as a reminder that joint pain, which has been very mild over the past four years has returned and with it some loss of range of motion in my right arm and possibly my right knee. I have been taking Celebrex since October but it's not been very effective. I should probably phone my doctor but I hate to bother her so will probably wait until I see her in April. We'll see how it goes.

On another topic, I seem to have a lot of repeat visitors here (Site Meter allows me to monitor the location of visitors) and I would love to hear from some of you so please consider taking a couple of minutes to leave a comment.

Weight

2010-01-18T11:42:00.002-05:00

Just wanted to post a quick update on my GI status. I am delighted to report that I have gained 5 pounds and am currently sitting at 115. I'm not sure when I last weighed this much but it's probably been at last 3 years. People are remarking how well I look and asking if I've gained weight. I find this a bit surprising because five pounds really isn't that much and this being winter all they really see is my face. Whatever it is, it feels good and I will continue to work hard at maintaining this weight. As for the reason. I can't blame it on Christmas as it was just before the holidays that I noticed that I'd reached to 114. I have been taking just the 1 liter of Peptamen 1.5 and some days less but I have been drinking one and occasionally 2 Boost or Ensure, the high calorie ones (355 cal.) every day without fail. Of course, over the holidays I also took in more orally including 2 Christmas dinners and then there was all the chocolate given to me by friends, all trying to do their part to fatten me up no doubt. Next week I see my GI doctor so will have some good news for him as well.

I can't say that the added weight has given me any more energy and my joint pain continues to be a problem but in general I am doing well and still benefitting from the added seasonal mobility provided by my new set of wheels.

Finished

2010-01-01T10:41:00.006-05:00

Yesterday, Joe and Mary came over to install the tread plate aluminum fenders which means we are done and I am delighted with the results. This is one mean looking wheelchair as is evidenced by the comments I get whenever I take it out. It's already becoming somewhat of a legend in downtown London. But more importantly, it is a joy to ride in the snow. Now when I venture out onto the snow covered streets, instead of being nervous about getting stuck, I actually find myself looking for snowdrifts. When I relayed this information to Joe and Mary they reminded me that "There are limits" but not to worry, I haven't completely thrown caution to the wind.

The ability to traverse the city streets in winter means that I no longer dread winter but in fact look forward to it knowing that, unlike in previous years, I could be stuck in the apartment for days at a time after a heavy or even moderate snowfall. And I no longer lay awake on snowy nights wondering if I will be able to get Molly out for her morning walk. I truly do feel liberated knowing that one more hurdle has been overcome thanks to the folks at Tetra.

And speaking of the folks at Tetra, I'd like to add that Mary and Joe have been wonderful throughout this entire project and I consider it a privilege to have had this opportunity to work with them. And I can't forget Wilma, my original contact with Tetra, to whom I am also extremely grateful.

Well, we've been having snow squalls all day resulting in an additional 15 cm of snow and it's time to take Molly out for her evening walk. Yeeha, should be fun.

Almost There

2009-11-30T16:21:00.003-05:00

I won't go into all the details, but I ended up buying another used chair from Duramed as the one they picked up Monday was beyond repair. This is a picture of the new tires with their very aggressive tread design. Should do the trick. Just a couple more minor tweaks to do, fenders and such and it'll be done. I wonder if there's a Monster Jam for wheelchairs.

Snow & Wheelchairs - Again

2009-11-24T11:00:00.002-05:00

As regards the previous post, we've run into a bit of a problem in that one of the wheels is seized to the axle. Joe, from Tetra, has been back three times to try to remove it but no luck so the chair was picked up yesterday and taken to the shop of a dealer. they called this morning to warn me that they too are having a problem and that the cost will be more than expected. I told them to go ahead and see what they can do. After all, we've come this far.

On a related matter, London city council continues to debate the plowing of sidewalks so I fired off the letter below to a counsellor who appears to be on our side. Don't know if it'll do any good but it's worth a shot.

Dear Counsellor Branscombe,

First of all, please accept my sincere thank you for your support on the issue of plowing sidewalks, as noted in today's Free Press article on this topic.

I use a power wheelchair to get around and on at least a half dozen occasions last winter I became stuck on the snow-covered sidewalks, each time within a block of my home in the city's core. And each time, I was forced to sit there feeling quite helpless hoping that a passerby would stop to help me out. Apparently the good citizens of this city have more compassion for the disabled than certain council members as, fortunately, I never had to wait long before someone came to my rescue.

The alternative to getting stuck, of course, is to stay in my apartment but I refuse to be housebound for several months of the year. I refuse to allow my disability to get in the way of living life to the fullest and am disappointed that some on city council don't seem to understand that I have the right to do so. The same right as more able bodied individuals or those who choose to drive rather than walk.

Consequently, in anticipation of the upcoming winter and a lack of confidence that city hall understands the needs of myself and thousands of other citizens of this city, I have spent a considerable amount of money by purchasing a second used wheelchair which I am in the process of winterizing so I can continue to be mobile once the inevitable snowfall arrives. I consider myself fortunate in that i can afford to do so and realize this is not a possibility for many elderly and disabled who may be on fixed or limited incomes.

Well, I have rambled on long enough. I'll close by asking that you, on behalf of the disabled, the elderly and feeble, and anyone else who, either by choice or necessity, uses the sidewalks, continue to support this cause.

Once again, thank you for your concern and thank you for taking the time to listen to my plea.

Sincerely,

Bill Birtch

A Winter Wheelchair?

2009-11-03T20:25:00.003-05:00

A couple of months ago, while waiting in line for an order of fish and chips, the person behind me asked how I liked my wheelchair, He then informed me that he had a used one for sale and without boring you with the details, I'll simply say that I ended up buying it. My old chair was due for new tires, overdue actually, and the batteries were getting old so I thought why not buy this one, the price was really good, and then I'd have a second chair which I could perhaps modify to use as a winter chair.

In a previous post, I lamented about how bad my chair performed in even a little bit of snow, how I'd gotten stuck several times last winter and how expensive it would be to import a winter worthy chair from the states. Anyway, I was relating this info to a support worker from the arthritis society and she told me about Tetra, a group made up of volunteer engineers who design devices for people with disabilities. I looked them up on the internet, found the local chapter and emailed them. After several emails we met and discussed the possibilities for winterizing my chair. Today I received an email from Joe, one of the engineers, who thinks he has found a solution, some larger tires with more tread which, with some minor modifications to the chair, should do the job.

Needless to say I am pretty excited about the possibility of having a chair that will allow me to remain mobile throughout the winter. These people have really been wonderful to work with up to this point and I am so grateful that I was able to find them. So, stay tuned and perhaps before too long I'll have a picture of my new beast to post.

Scleroderma and Physiotherapy

2009-10-14T21:16:00.004-04:00

A large proportion of my visitors arrive here after doing a search on "scleroderma and physiotherapy". And although I did address this topic in an earlier post I realized that I'd never talked about the month I spent at an Ayurvedic Clinic.

Soon after my diagnosis in February of 2004 I decided that if western medicine couldn't cure me perhaps I could get help in the east. And so, after some extensive research on the web I settled on the Ayurvedic Natural Health Clinic near Calingute, Goa, India, primarily because it was the most reasonably priced at approximately $1600 Canadian for a one month stay.

I arrived in mid April and stayed for 30 days. While there I underwent an extensive holistic treatment plan including a special diet, herbal medicines and three to four different massages every day. I won't go into more details as you can find out more by clicking on the link in the previous paragraph. I will say however that the treatment was beneficial and I saw definite improvement in my range of motion and energy level.

Would I recommend this type of treatment? Most definitely. I have searched for a similar clinic in North America but found nothing comparable. Traveling to India again is not an option as the trip is simply too grueling and expensive.

Hope this helps.

GI Update III

2009-09-06T09:01:00.002-04:00

It as been almost a month since my last update so thought I'd better add something. In general the feed continues to go reasonably well. The plan to ingest 1.5 litres of Peptamen 1.5 is a work in progress. I have increased my feeding rate to 75 ml/hour and even tried 80 for a couple of days but with an increase in bloating so backed off again. Have also experienced some bloating at the 75 rate recently and am considering doing a course of erythromycin to clean out my gut. I'll give it a couple more days to see if it takes care of itself though.

I really haven't been monitoring my intake very closely so can't say how much I'm getting on a daily basis but I suspect it's averaging about 1.25 l. Perhaps I'll make an effort to log my time on the feed, if for no other reason than to see if I'm actually making any progress or simply standing still. My weight is currently 113 lbs., up 2 or 3 pounds from a month ago, not spectacular but moving in the right direction at least.

GI Update

2009-08-07T11:45:00.002-04:00

Yesterday was my second appointment with Dr. Howard. I had mostly good news to report in that I continue to tolerate the Peptamen 1.5 quite well, have only had 2 incidents of reflux since starting the formula 6 weeks ago ( both the result of eating too late in the day), no nausea and only minor bloating. The down part is that I've only gained 1 kg (2.2 lbs.).

The solution? Increase the feeds by 50% to 1.5 l/day. This would give me 2250 calories plus whatever I can get orally. I forsee two potential problems with this. Firstly, at my current rate of 70 ml/hour that works out to close to 21 1/2 hours that I will have to be hooked up meaning I have 2 1/2 hours in which I can go out. Secondly, I already feel full most days so an increase of 50% means I could end up feeling bloated and over full again on a regular basis.

And so, I think I will just take things as they come. It's summer, I love being outdoors and 2 /1/2 hours is just not enough time to do the things I need or want to do. I'll make 1.5 l my end goal but am not going to lose any sleep over it if I don't reach that every day. For example, if I allow myself up to 6 hours of 'free time', which sounds much more reasonable, that still means I can get 1260 ml/day or almost 1900 cal. On those days when I stay in due to rain or whatever I can aim for the full complement. Also if I ease into this more gradually, perhaps I can avoid the potential bloating problem. The other possibility is that I can increase my feeding rate but based on past experience I am not optimistic about that possibility. My conclusion, take it slow and see what happens. The bottom line is, I am not losing at the current rate of feeding so there's no big rush to get those extra calories.

My next appointment will be in October some time so that gives me a couple of months to work on the new regime. Overall, I'm feeling pretty good about it.

Canadian Health Care

2009-07-24T17:19:00.005-04:00

The majority of people visiting this site are our good neighbours to the south in the United States so I wanted to post this in response to a video I was just made aware of in which a Canadian, .Shona Holmes, is interviewed on Fox News. Apparently she was recruited by conservative interests in the US to speak about how our health system is a failure.

This video is full of inaccuracies and leading questions and some just plain ridiculous statements. For example, this woman did not have a tumour, she had a cyst. I suggest that the word tumour was used because the dramatic effect is more powerful than calling it a cyst. Shona Holmes also says that our system is not free because we pay for it with our taxes. Well, duh, this statement alone shows how ridiculous her whole argument is. Of course we pay for it with our taxes but it's a darn sight cheaper than paying for private health insurance or worse, paying $100 000 for surgery at a private clinic as she did.

My own case is evidence that our system does work. I have never paid one cent for any of the medical expertise I have received. I currently see two specialists, a rheumatologist and a GI doctor on a regular basis, plus my GP as required. In June I spent the night in hospital as a result of my fall and it costs me nothing. I see a physiotherapist weekly and, again, my visits are covered by the health care system. Yes I pay taxes so I suppose that I pay indirectly but it's a great trade off.

And then there's my medication and formula which come to over $2000 a month. I pay $120 (based on my income), again not a bad deal. I could go on, but I think you get the idea. I get the best care possible and it's not costing me an arm and a leg nor do I need to go out and get private insurance at an outrageous price and for which I would probably be turned down anyway because I have a progressive chronic illness which is expensive to treat.

So, if you should happen to see the ads run in the US featuring this woman please keep in mind that she is one person out of 33 000 000 and the rest of us are pretty darn happy with our system. Is it perfect? Of course not, but it sure beats the alternative by leaps and bounds.

Update-July 31/09

Heard a news item on the radio this morning re this woman's case. In an interview with a medical expert, it was stated that no one has ever died from this type of cyst as it is comsidered benign and if it did become malignant she would be scheduled for surgery immediately. More evidence that this woman is definitely not credible. She is apparently now preparing to sue the government over the matter. That explains a lot.

Indulging Myself

2009-07-21T19:23:00.006-04:00

Well, it's been almost four weeks since I began the new feeding formula so thought I'd better add an update, albeit a brief one.

The feeds themselves are still going well. I have had a couple of minor incidents of reflux but it was my own fault as I've been getting careless about eating in the evenings. For the most part though I've gotten away with it which is encouraging.

My weight remains the same. The other day, I realized that I'd been enjoying a Guinness (Irish beer) each day when I was gaining the weight so yesterday I went out and bought a dozen. There is anecdotal evidence that it helps with digestion but I don't know if anyone has ever done a study to verify this. Whatever the case, I enjoy it and the small bit of alcohol doesn't seem to irritate my GI tract so what's to lose? I know that it used to be prescribed in the hospital for people with weight maintenance problems and it was also recommended, in moderation, for nursing mothers. Of course this would be taboo nowadays but, hey, hundreds of years of Irish tradition can't be wrong can they? And after all I am of Irish heritage so I'm just being true to my roots. That's my story and I'm sticking to it damn it.

GI Update

2009-07-02T17:40:00.004-04:00

As I mentioned last time, I am now on a new feeding formula and to put it briefly, things are going well. In fact, they are going exceedingly well so i wanted to share my experience here in case it can be of help to others.

I am now on Peptamen 1.5 and ingesting 1000 ml, or 1500 calories, per day. Previously, I was using Jevity 1.2 which came in 1500 ml bags but I was only able to handle half that each day so was only taking in 750 ml (900 cal.) and even that was causing a great deal of discomfort in the form of reflux, bloating and feeling nauseous, although I never actually brought up. This also meant that I was taking in very little food orally because eating simply did not appeal to me. Well, with the Peptamen, I not only have none of the side effects but actually am feeling quite hungry and have found myself eating substantially more throughout the day. And I have gained about three pounds so am almost back to the 110 I weighed a month ago. All of this in only nine days. From my understanding, the main difference between the two formulas is that the Peptamen is predigested so my gut doesn't have to work as hard to get the nutrients from it.

I have only made minor changes in my medication, taking two instead of one 20 mg dosages of Pariet and making sure I take three 10 mg doses of dom peridone each day. The only glitch I ran into was with the feeding tubes. After making numerous phone calls with everyone telling me something different, I finally discovered that the Kangaroo pump and spikes I was using would work with the Peptamen, I just needed to use an adapter which is supplied free of charge by Nielsons who makes the Peptamen.

And so, initial results are encouraging and with luck things will continue to go well. I remain guardedly optimistic.

GI Issues

2009-06-18T11:52:00.004-04:00

Me emceeing at our concert

Yesterday, I saw a new GI specialist and am very pleased with the results.

First a little background though. Weight maintenance has been my major challenge since the onset of this disease. In January of 2008 I reached a new low of 93 pounds which, on my 6' 1" frame means I was basically a bag of bones. I managed to put some of that back on but couldn't get past the 100 pound mark so agreed to have a feeding tube installed in April, specifically a G-J Tube. I was delighted with initial results as by the end of June I was up to 110 pounds. But I seemed to plateau there and then started having problems including nausea, bloating and reflux. Feedings were cut back to half and I have stayed there until the present. This has resulted in no more weight gain but at least I have maintained the 110 pounds. About a month ago I noticed that bloating, nausea and reflux were becoming the norm again. And thus my visit to the gastroenterologist, Dr. Howard.

My first impression was that this was a very empathetic and gentle man and his actions proved me right. The second thing that impressed me was his thorough knowledge of his field further complimented by his clear and concise explanation of my condition and the options that were open to me all of which he put in writing for my benefit. By the end of his explanation we had been joined by two interns and finally a dietician.

The result of my visit is that I will be going on a completely new feeding regimen with changes to dosages and types of medication and I am very optimistic about the future. I have said it over and over again that if I could just get past this weight thing I would be one very happy camper. Scleroderma has affected my life in numerous ways but I no longer see any of those things as affecting my quality of life on a day to day basis as I have learned not only to cope with but overcome each one as it arose. The exception, of course, is my weight and I'll keep you posted here with periodic updates. I expect to receive all the details soon so will post early next week for those interested in more details.

2009-06-12T18:19:00.007-04:00

(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.

<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<<>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

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.

Awareness & Fundraiser Concert

2009-05-21T10:53:00.006-04:00

UPDATE: Thundermug will not be making an appearance. Sorry folks.

As the date approaches for our first ever Scleroderma event in London things have been a little hectic. This past Saturday Soul Medix pulled out of out the line up. By Monday The Chris Trowell Band had stepped in to replace them and we also found out that Thundermug would be reuniting to make a guest appearance. All of this meant designing and printing up new posters as the old ones were now obsolete. While I was at it I also printed up 250 more tickets. And so the line up now appears as follows:

Set 1 - Chris Trowell Band

Set 2 - Robbie Antone's Blues Machine

Set 3 - Bill Durst

Open Jam

Sets are to be approximately 45 minutes beginning at 3:00 and the jam will officially end at 8:00 but who knows where it will lead.

Dermatology Online Journal: Volume 8 Number 1

2009-05-18T10:25:00.005-04:00

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

2009-04-27T15:10:00.003-04:00

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 Next Step

2009-04-13T22:50:00.003-04:00

In a previous post I talked about taking up guitar again even though my hands are unable to play in the normal way - all I can use are my two thumbs. Well, yesterday, I took the next step. I was at my daughter's for dinner and as we sat around chatting afterwards, two guys showed up with guitars. The plan, apparently, was to get me into my son-in-law's studio for a jam. Feeling somewhat nervous about playing with all these experienced musicians, there were four of them present, I made my way up the stairs to the studio where they set me up with my guitar and an amp and before I knew what was happening we were all making music together.

There were two acoustic guitars, an electric bass, a drummer and me on slide. Well, I had the time of my life. This was a first for me and something I'd always aspired to. It's now more than 24 hours later and I'm still pumped about the whole experience. The guys were very supportive and did everything they could to make up for my lack of confidence (and talent) with the result that I even surprised myself. We must have played over a dozen songs and not only did I play accompaniment on all the songs but I took my turn soloing on every one of them.

If someone had told me a year ago that this would be possible I never would have believed them. In the eleven months since I bought my first lap steel, I have progressed far beyond where I was after 20 years of playing without any physical impairment. Instead of being a hindrance, scleroderma has actually enabled me, through the adjustments I made to my playing, virtually starting again from scratch, to surpass anything I thought was possible five years ago. Obstacles can indeed be turned into opportunities for growth. I have achieved a life long dream not despite of having scleroderma but because of it. How's that for turning things around?

So what's next? I am now that much closer to working up the courage to play at the scleroderma concert in June. Still not making any promises though.

ASMP

2009-02-01T20:48:00.002-05:00

ASMP stands for Arthritis Self Management Program. I won't go into all the details because they are available here.

I would, however, like to take this opportunity to promote the program. For the past three years I have been an instructor in this program, delivering it at the local Arthritis Society office twice a year not only to people with arthritis but to a wide range of individuals with other diseases as well, including scleroderma. During these sessions I have seen dramatic changes in participants' self confidence and their ability to take control and manage their disease. And even more encouraging is the fact that veryone who has completed the program has been extremely positive about the experience.

I urge you to investigate the link above and consider taking the program. I promise you won't regret it.

The Benefits of Physiotherapy

2009-01-22T14:43:00.002-05:00

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.

Happiness and the Brain

2009-01-15T13:31:00.001-05:00

This video includes information on how meditation affects our mood for the better and is well worth a watch.

Meditation and Scleroderma

2009-01-09T22:55:00.007-05:00

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.

Quarterly checkup

2009-01-07T15:22:00.002-05:00

Had an appointment with my rheumatologist, Dr. Pope, today. Nothing new really aside from some very slight softening of the skin on my forearms and backs of my hands.

The meeting was fruitful in other ways however in that Dr. Pope has agreed to speak at the AGM of the Scleroderma Society of Ontario in September. She also agreed to do a spot on the local cable channel to promote scleroderma awareness and, finally, to distribute a letter composed by one of our members to new patients promoting the local branch of the SSO.

This is, indeed, one very special lady. Not only is Dr. Pope in demand by the international scleroderma community but she always finds time to do what she can locally and all this while raising six(?) children and maintaining a very busy practice at St. Joseph's Hospital here in London. We are very lucky to have her.

Scleroderma Society, London Chapter - 2009 Events

2009-01-01T11:08:00.004-05:00

Here, we are, another year has come and gone and a new one has just begun. I don't make new year's resolutions but there are a number of things I want to accomplish this year.

First off, as one of two key contact people for the local chapter of the Scleroderma Society of Ontario (SSO) I am organizing an awareness/fund raising event to take place in June to coincide with scleroderma month. The tentative date is Sunday, June 7 and the event itself will take the form of a music concert with the help of three or four local blues and rock bands. I have never done anything like this before but with the help of my daughter, Lisa, and her partner Dave, who are very much a part of the local music scene, I think we're up to the challenge. Who knows I may even work up the courage to join in on a song or two myself - no promises though.

London has also agreed to host the AGM of the SSO which we will combine with our fall meeting in September. We are hoping that Dr. Janet Pope, our local and internationally recognized scleroderma expert, will be able to take time out of her busy schedule to be guest speaker.

And then there's the spring meeting to plan for as well. Exciting times for the London Chapter of the SSO.

Happy New Year everyone.

Back to Normal

2008-12-26T14:40:00.004-05:00

Well, Christmas has come and gone along with all the business that goes along with it and life is now back to normal, whatever that means.

Christmas eve and a good part of Christmas day were spent at my daughter's and it was a very enjoyable time. On Christmas

Eve, however I almost had to back out because I was having some minor bowel problems and found myself visiting the bathroom more frequently than normal. This in itself was not the real problem. Rather, my hesitance was a result of the fact that using an unmodified toilet is a major challenge. And secondly, the lack of mobility in my hands, arms and shoulders makes it impossible for me to wipe my butt. This brings me to today's topic about ways to make our lives easier through the use of a variety of devices.

The first and most extreme step I took was moving out of my row house to an apartment building. Although my apartment itself is not modified, living here means I have automatic doors, an elevator, covered entrance where I can get onto the paratransit bus without being exposed to the elements, and living accommodations confined to one floor, not to mention the fact that I live in the heart of the city with ready access to most amenities.

In order to make my days easier I have purchased a number of items beginning with those pictured here in my bathroom. They include a clamp-on bar to assist, not only getting into the shower, but also getting on and off the toilet, a raised toilet seat and finally a handheld spray attachment which I use as a sort of bidet in place of wiping.

I also purchased a hospital bed which I can raise so it is easier to get in and out of bed. In addition, I can elevate my head which helps avoid reflux problems. I also have a 3" thick memory foam mattress pad which has made sleeping much easier.

Other conveniences include a mechanical reacher for picking things up off the floor, a frequent occurrence since I am constantly dropping things. The reacher also comes in handy when getting dressed ( putting on my pants and socks primarily). The list also includes non-elastic socks which are easier to put on with the reacher, plastic dishes which are lighter and don't break when I drop them, pulls on zippers because it's too difficult to grasp those little zipper things they come with, built up utensils for eating and food preparation, spring loaded scissors, a crock pot and toaster oven to simplify cooking, an electrically operated recliner and I'm sure there's more which escape me at the moment but you get the idea.

I also found a local online grocery store which is a real life saver in the winter when I can't get out so easily.

In summary, there is an endless list of things we can do or purchase to make our lives easier so why not take advantage of them?

My Other Hobby

2008-12-23T16:02:00.006-05:00

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.

2008-12-20T20:43:00.001-05:00

Today I had a parcel that needed picking up at the Post Office so I took the risk and ventured out. I didn't get a hundred yards down the street before I got stuck in the snow. Luckily a very kind gentlemen in my apartment building noticed me struggling to get unstuck so came out to help me. I made it to the post office without further incident even though it meant using the road instead of the sidewalks every now and then.

I didn't let this little incident upset me, instead I was thankful for the help of a stranger and spent some time later pondering the fact that people, usually complete strangers, will go out of their way to assist me, opening doors, getting items off of unreachable shelves in grocery stores and in countless other circumstances. It speaks well of humanity don't you think?

I teach classes for the Arthritis Society, the Arthritis Self Management Program, and I often tell the participants that, in one sense, I am luckier than most of them because my disability is visible and subsequently people go out of their way to be kind and helpful. Most of them, however, despite having a debilitating illness, look perfectly fine with the result that, not only strangers, but even family often don't know, or forget that they would benefit from assistance from time to time.

I see that I've had three visitors to the site so far. If you do stop by, I'd really appreciate your comments, even just a short 'Hello' would be nice.

2008-12-19T11:09:00.000-05:00

Snow & Wheelchairs

Woke up this morning to discover that the predicted snow storm had indeed arrived as evidenced by a few centimeters of accumulation, high winds and poor visibility. And more snow is on the way, on and off, between now and Christmas. The good news is, it's shaping up to be a white Christmas. The bad news is, I'll be housebound until the streets get cleaned up because my wheelchair doesn't handle snow very well. Last winter I got stuck a half a dozen times and had to depend on the kindness of strangers to get me moving again.

So, here's the thing. I love my wheelchair. It makes it possible for me to walk my dog, Molly, to pursue my hobby as an amateur photographer, do my own shopping, attend appointments, meet friends for coffee and all those other activities that generally give me a level of independence I would not otherwise enjoy.

And then winter happens and, more specifically, snow. Any more than a couple of centimeters and going out means getting stuck becomes a real possibility. So what are the possible solutions to this dilemma? The most obvious one is don't go out but that's not an option simply because I'd end up going stir crazy. Of course I can take paratransit to appointments and such but that doesn't help with walking the dog or more spontaneous activities . Paratransit rides, for one thing, must be booked three days in advance so their usability is limited to those activities which I know about ahead of time. Some days it'd just be nice to go for a coffee if the mood strikes me. There's also the wheelchair taxi but that can get pretty expensive.

What about the wheelchair itself. I've looked into winter tires but there just isn't anything available. Through research on the internet I've discovered that there are chairs like this one or this one (how wild is that?) which will navigate through snow but there are no dealers in Canada (is that not ironic?) and even if there were, the Assistive Devices Program (ADP) will not provide any funding to help pay the US$12 000 plus price tag.

Another option is that I just go out and buy the chair myself but after taxes, shipping and the exchange rate are factored in we'd be approaching $20 000 and I haven't got that kind of money right now.

So here's my beef, ADP will provide funding for a chair which 'meets the user's basic needs'. Well, since this is Canada, isn't getting out of my apartment 12 months of the year, snow or no snow, a basic need? I'd even be happy to pay the difference in added cost for the upgrade but currently that isn't gonna happen. Anyone out there interested in joining a letter writing campaign to change ADP's stance on this?

So, I wanted to keep the mood here positive and here I am griping already. Hope you'll forgive me this one but I think it needed to be said and I will sit down soon and compose a letter to the minister of health for Ontario stating my concerns. After all, with all this snow I'll have lots of time to do it.

2008-12-17T22:23:00.001-05:00

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

2008-12-16T21:59:00.001-05:00

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.