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judyt

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About judyt

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    Auckland, New Zealand

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  1. Hi Kamlesh, I have a daughter who is Coeliac so I know the pitfalls of trying to maintain a Gluten Free dietary regime. However, she knows exactly what upsets her and does all the food preparation in her family so knows exactly what is in what. Her husband has to lash out into the forbidden foods when he is not at home but he is getting used to it. They live on what we in NZ call a Lifestyle Block, several hectares with their own animals so they raise their own meat from birth and know what they have been fed, a luxury not available to most of us. Prior to my diagnosis in 2002/
  2. Well Jean, I can only reply with my own experience. I have Achalasia which is lack of peristalsis and other changes in the oesophagus but so far I don't seem to have any lung involvement. This has been the case for a number of years so I am not anticipating lung problems in the near future.
  3. Hi Ashley, I live on the other side of the world from where you are, but in 1965 when I was 21 and on my OE to Europe and Britain, I started getting the sort of health issues you describe. In my case more Raynaud's Phenomenon and Gastric pain but nontheless very similar. Eventually as years went by I started having more internal problems but NO SKIN INVOLVEMENT that I was aware of. In 2002/3 I was finally diagnosed with CREST Syndrome which is now more commonly called Systemic Sclerosis. Do your arithmetic and you will see that I am now 73 and not ready to pass away. I hav
  4. Hello Margaret, Reading your post I am tempted to think of the non-healing in terms of the problems some of us have with ulcers. An ulcer is really just an area which won't heal as I know to my eternal regret. Just at the moment I am faced with a large area on my shin which won't heal and is now infected. It seems to me, after talking to a wound nurse yesterday, that I should have spoken up a couple of years ago when this area was injured. Silly me just assumed it would eventually return itself to a normal state but it seems now that that has never and maybe will never happen.
  5. Hi Dimarzio, As you no doubt expected you have received plenty of evidence from others of us that Ulcers are certainly associated with Scleroderma, although more often they are on digits and ankles due to lack of proper circulation. My bug bear has been ankles, I know I have compromised venous return which causes a build up of toxins in such places and so wear thigh high support stockingsevery single day and have done for getting on for 10 years now. Even when taking that much care the ulcers still erupt uninvited and then when there is an injury of some sort an ulcer is almost inevi
  6. Hi, Sorry to hear your news but thankful you have found us, if you stick around you will find endless help and support here. Rings, fingers I don't remember how many times I have had to have my rings resized. Not cheap either but I felt that I wanted to keep wearing them. One time I nearly lost them though - just a wee warning - I had got very cold out on the water in our little boat (my husband loved his boat) and when I came in to a camping ground I just scooted into the hot showers. Lovely hot water!! but what I didn't notice was that my fingers had shrivelled in the extreme
  7. Dimarzio, I had the same thought as Amanda regarding your wife. Amanda has the small advantage of having a husband who has some knowledge and may I say skill in the field of Counselling but sometimes even I can some up with similar thoughts!! My children, now that they are adults, are the only ones who have ever confessed that they think I sometimes have good ideas in this area!! but they have to because of who I am to them. The rest of the world continues to think I am a fruit loop who simply doesn't try hard enough. I remember back in 2005 when my late husband was first diagn
  8. Hi dimarzio, I note from another note you have posted that you think your symptoms sharted when you were a child. I have the same memories. I was frequently very sick and I know now from my Echo's that I had Rheumatic Fever as a child which was unrecognised. The Rheumatic Fever left me with a damaged Mitral Valve which was picked up in 2003 when I was 59. At that time I had some irregular heart beats and some Pulmonary Hypertension along with a couple of Murmurs, one of which I still have apparently. Anyway I have acute memories of the aftermath of one of my illnesses (flu lik
  9. Hi Dimarzio, We do understand to a certain extent what is happening at your house. It is hard when one has no particular obvious involvement and you just feel awful with nothing outward to show for it. For years I was in your position but with no diagnosis either I was the one who thought I was a sandwich short of a picnic. I wasn't really until things started happening that suddenly there was evidence that something untoward was going on. My first real symptom after the Raynaud's Phenomenon was sudden and unexpected vomiting of blood. I felt like a volcano was going off in
  10. Dimarzio Have you tried asking her to read some of these posts? Have you suggested to her that she do the unforgiveable and simply Google Scleroderma? Surely reading some of that stuff would give her some idea of how it can be. Judyt
  11. Out of interest only because I am no expert. There was/is a young lady here in NZ with Diffuse who a few years ago was so badly affected by her skin thickening that her skin would split when she moved. Then the splits would ulcerate and she was in a very sorry state. As I have told you before we are not well served in this country with Scleroderma Experts and the Rheumatologist who was assigned to this young lady in hospital was at her wits end to know what she could do to help. From what I remember she also had lung involvement so on the face of it not a hopeful picture. In
  12. Dimarzio, Sounds just like the responses I have been getting most of my life. You did miss the best one though - "you could try harder. There is no reason why you can't start to achieve more". Unlike those of you who live in other countries I have no recourse to an Expert. There are none here and not one of the Rheumatologists I have been assigned to has any real idea what they are talking about. Judyt
  13. Hi Soul dancer, Like Jo I am here almost every day so I do see everything, no worries there. You ask how do I know the prolapse was caused by Scleroderma. Well in some ways I guess I don't really but when the Surgeon outlined to me the usual causes of a prolapse I didn't seem to qualify for any of them. I have never been pregnant and I am not overweight and just plain bad luck didn't ring true to me really, particularly once I joined this forum and read other stories. Since my diagnosis no doctor has said to me that the prolapse was NOT a Sclero thing. And yes I too wonder if m
  14. Hi Dimarzio, I have what has been labelled as Limited and as far as I am concerned I have no skin involvement . However the one and only Scleroderma Expert in this country, when he agreed to see me, said that I had some involvement in the tips of my fingers. I do however have extensive involvement internally. The first thing I was aware of 30 years ago was a total prolapse of my rectum. That was repaired a number of years later but there was no diagnosis of why it happened. A few years after that I had trouble swallowing, my food seemed to be getting stuck somewhere between my
  15. Hi Dimarzio and Soul dancer, Yes I agree, a result with Centromere pattern and negative SCL70 is what I have and my disease is labelled Limited.
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