GI Issues

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.

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

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

THANK-YOU!!!

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

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

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

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

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

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

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

Awareness & Fundraiser Concert

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

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

Spring Meeting

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

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

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

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

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

 

The Next Step

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

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.