Update

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

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

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

Busy Times

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

(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

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

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.