My name is Diane. I am 41 and a wife and mother. I have a wonderful husband, Rick and two boys, Mike 16 and Jeff 13. I am a retired registered nurse.
I actually had symptoms of Raynaud's phenomenon in nursing school 23 years ago but had no other related problems. In 1980 I began feeling extremely tired and my hands were sore. In 1983 I was at the hockey arena and I was able to show my doctor first hand a really good Raynaud's episode. It was extremely painful and my doctor immediately proceeded with lab work. I saw a rheumatologist and a gastroenterologist. I had a positive ANA test and after consultation with the gastroenterologist, they said I had severe clinical symptoms of scleroderma affecting my esophagus.
My primary sites are my esophagus, stomach, bilateral hands and feet with the Raynaud's, occasional swelling of my feet and legs, and the most frustrating of all is the esophageal bleeds from regurgitation and ulceration. They are uncomfortable to say the least and I end up requiring transfusions two to three times a year. To look at me most people say that I am very healthy looking. I tend to look like I have a terrific tan! My scleroderma seems to be primarily systemic and I have been diagnosed as being with Crest syndrome as well as mixed tissue disease.
I get very frustrated at the bleeds, and constant heartburn. Medication seems to work for a while and then a really good episode comes and everything goes haywire for a month or two. I am presently taking Losec twice a day, Prednisone daily, Adalat for the Raynaud's and analgesics for discomfort. There really are bad days and then some good ones. I guess that you can always feel sorry for yourself but I only get some hidden drive to go ahead and find something to do and be productive.
I am not working now but I do enjoy my family more than ever. I guess we really need to know that it truly is the little things in life that are truly grand! Right now I have a dilemma, I am not absorbing enough nutrients! In other words I am malnourished! I have been told it might be a good idea to perhaps get a gastrostomy tube inserted to supplement my oral intake. I am losing muscle mass and I feel tired again. What a circle.
I have been booked to have a Bard Button inserted into my stomach for nutritional feedings. I can't remember if I had told you that after my last esophageal dilation I had a bleed. I have decided with the doctors that it would be a very good idea to go with the tube for a few reasons. I would be able to let the esophagus heal a little and I need to put a few pounds on these bones.
I am really looking forward to doing this and maybe I will feel really good for the holidays. I'm sure that it can't make things any worse and I will feel better. You know that even if you feel mentally charged that's OK. too!I Anyway that is where I am at present. I am always looking for any new ideas in treatment and I know some day things are bound to change. I always try to live by this philosophy "It could be worse".
Update 12/4/96
I just thought that I would drop you a note to update you on how the G-tube insertion went. Well the proceedure itself was fine but about 18 hours after that I developed an infection and by the end of the week I was in the hospital with peritonitis (an abdominal infection) I was in hospital for 6 days. I needed mega doses of I.V. antiobiotics and of course no food.
I lost about 5 pounds. I am home now and feel really quite good. I am using the tube daily to supplement my oral intake and next week I will have another esophageal dilatation so maybe I will be on the road to gaining weight. The tube itself is not uncomfortable and actually I barely notice that it is even there. My family is quite comfortable with the idea of the tube and things are running smoothly.I am releived to have this added option so I know I can get nutrition every day.
You can reach me at: rwaite@mnsi.net
Copyright © 1996 Diane Waite
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