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Everything posted by Sharonvandee

  1. Sharonvandee

    Pulmonary Embolism

    Thanks Jenny and Jefa for the link. They found a smaller clot in the leg yesterday so the article in the link was fairly spot on they usually do start in the leg for me. I had alot of test done yeasterday including a lung perfusion ventilation study to try and see what is going on and to see if the clot is dispersing. So we will see what she says when I see her. 6 days to go and counting lol
  2. Sharonvandee

    Helping The Lungs

    Hey all Recently I have had problems with being breathless after 12 mths of a wheeze in the left lung that wasn't relieved by the usual puffers. I was sent for a chest XRAY 4 mths ago which showed little. After the problem slowly worsening and a cough but no infection the other day the DR odered repeat chest XRAY and lung function test which shows FVC of 212 so we will work on that. I go to see the DR today as she says she needs to discuss the XRAY results. I have already looked at the Xray and there are differences that are obvious so at least I know why I am feeling dizzy and tired and very breathless. As my general practitioner the only one that knows of this condition in the local area left on Saturday and is gone for 5 mths who knows what today will bring but I have to take pamplet again about the condtion for her and hope that she will listen and not tell me that it is anxiety again grrrrrrrr. If there is no help today at least I know that my visit to the scleroderma clinic is only 8 days away and we have our hope pinned on getting some decent answers and treatment happening before this worsens any more. Does anyone have any suggestion on helping my lungs along a little to improve their capacity? Are they any question I should remember to ask when I go to the clinic next week? Thanks for the love and support.
  3. Sharonvandee

    Pulmonary Embolism

    Hey Nan The last echo they did was over 12 mths ago but they may do one in Melbourne I will just have to wait and see I spose.
  4. Sharonvandee


    Last week due to week of sleeplessness, my general practitioner placed me on Tamazepan 10mg. Be it a conincidence or not we are still to establish but my problems with breathlessness and being tachycadic have worsened. I have only take the tablet for two nights then I didn't take then for a night and then I took one again last night. The day after I didn't take it I hit the wall real bad and I am still real bad , even at rest I get breathless, I feel quiet weak. Just wondering if this is something that is just effecting me? Is this maybe just a coincidence? Has anyone else expereinced this?
  5. Sharonvandee


    Hey Jefa Thanks for the reply I saw the DR today she never even mentioned the tablet instead suggested I have a CT scan as it might be a blood clot on the lung making me feel worse, so maybe I am clutching at straws. or not wanting to face this and all that comes with it. you can run but you certainly can't hide.
  6. Sharonvandee

    Yet, Another Feet Question.......

    Lol I wear Aussie slippers to all year round though the rest of the house thinks I am crazy at tleast I am warm and they last for a long time even with the constant wear. To make them warmer I wear woollen socks in winter which wear worth the little extra hubby made me pay for them. Nothing like a good aussie sheet to keep you warm. Take care Kindest Regards Sharon
  7. Sharonvandee

    My Nephew Was Just Diagnosed With AIDS

    Dear Jackie Sorry things arent going well for you are your family. It must be made harder by the fact that your nephew is so young. I am sorry you are unable to be with you sister to comfort her at this time as that can often make a difference for you both. Just like scleroderma hold onto the hope that there are so many advances being made and AIDS has alot more research being done on it then scleroderma so anything is possible. Anway just wanted to send hugs your way Kindest regards Sharon
  8. Sharonvandee

    Breathing Exercises

    Dear Kamlesh I would be interested in finding out more about breathing exercises as I have early stage lung involvement, would you please PM so we can talk further.
  9. Sharonvandee

    Hubby Takes A Sneak Peak

    As I watched the Tv tonight, Hubby was surfing the net and relaxing, when I got up to make a drink I saw that he was surfing the Sclero.Org site. When I asked about it intitially he said very little, but eventually he told me that after all the positive things I had gained from the site and forum that he was just looking for some of his own answers as my sudden deteriation over the past few months is worrying. I often try to hide alot of this from him but we are getting the point where this is impossible. So a big thank you to all the people that make this site possible, and to all the people who post and reply, this site is for us one of the only sources of support that we have. We dont know how we would get through some of this with out you. An extra big thanks to Jennifer who told me about the site through myspace
  10. Sharonvandee

    Hubby Takes A Sneak Peak

    Janey I am off to DR again today but the best treatment can't and won't come till I get to Melbourne in 11 days time and counting. The lady I am seeing there is top of her field in this country so I am hoping she will help with the lung probs and the stomach bleeding and other GI stuff. The specialist that was looking after all this decided to go away for 2 mths so I am on the back burner and my general practitioner the only other person in my area that know even a little about scleorderma is going overseas for 5 mths so I will have to find a new general practitioner and go through the re education stuff again. Last time my general practitioner went away her locum told me all my problems where because of anxiety and he didn't believe I had scleroderma as I had no REAL skin involvment, it can be so frustrating and that is why hubby has started looking I think he can see that this may be a battle till we get a managment plan.
  11. Sharonvandee

    How Do You Stay Positive?

    Thanks for posting Kamlesh Big Hugs I too am struggling with this as are most of us at some stage I spose. Staying positive is hard when your life is spiining out of your reach and it often takes time to reflect and try and see what is positive that is coming out of all the choas. The support of this group has helped me get through.
  12. Sharonvandee

    Nan's Visit To Johns Hopkins

    Dear Nan Glad to hear things went well on your visit. I am glad you have someone taking care of you and making sure they keep on top of things.
  13. Sharonvandee

    Kobis Update

    Sorry to hear that your family is learning to deal with this. I am off to Melbourne soon to see sepcialist and I have heard there are some great DR there which I hope are helping you and your family find ways to cope.
  14. Sharonvandee

    Reinventing Ourselves

    I so relate to what you are saying 3 years ago I was a girl with ambition waiting for a baby to be conceive, and it was all down hill from their or so it seems at times. My whole family has had to learn and adapt to the changes in diet, mood, ability and energy levels. It has meant that my dreams of working with children in childcare are on the back burner for now as are my love of cooking and bushwalking. But from this I too am hitting back and determined that enough is enough I want to find things that I can do and makes sure I make the best memories while I can. See this has made me realise that the busyness that we call life meant that I took so many things for granted now it is time to stop smell the roses and rejoice in all the things that are good in my life.
  15. Hey Was just wondering if anyone who suffers from GERD and dysphagia uses a protein shake/supplement to increase their nutritional intake. As this disease progresses I am finding that more and more foods set of severe heart burn that keeps me up for hours after eating, the morning cup of tea is enough to start the morning off so I am looking at maybe starting on protein powder and giving the system a break for a bit maybe even let it heal a little. Problem is I thought I read somewhere that high protein diets are not a good idea if you suffer scleroderma because of the damage the disease can do to the kidneys. Any advice welcome - pm me if needed
  16. Sharonvandee


    Thanks Janey for the reply I would love any recipe you have that works. Gets boring eating the same things. I have had a few suggestions alwready from the girls which meant the other night was the first time in months I ate a meal enough to fill my tummy. Went to bed feeling like a king. Till four hours later then the heart burn and stomach pains start, but het it was so worth it just to sit with the family eat together not choking just contentment. the things I used to take for granted.............now I treasure. funny how this disease can do that to people and family.
  17. Sharonvandee


    I suffer from dysphagia and GERD and at times struggle with the adaption and changes this makes to my life. I was wondering if anyone that has these symptoms has any suggestions of recipe or styles of preparation to make foods more palitable. my home zucchini soup and custard are getting a little boring so I am looking for new ideas to increase my ever decreasing appetite Thanks in advance
  18. Sharonvandee


    Dear Mary, Somac is similar to nexium and adalat is a calcium beta blocker which is usually used for blood pressure but I use it for relaxation of the esophegus as it spasms alot. I have extreme acid too with constant regurgitation and choking during every meal that is why I just dont eat with the kids unless it is mashed up like baby food. I have never heard of prosolec hear but from what your saying it sounds a little promising I may mention that to my dr when I see her. I havent eat normal food for at least six months now but even thick food will get stuck now so hopefully they have a drug here in Austrlaia like the one you mentioned and I can start to eat even a little. heres hoping
  19. Sharonvandee


    Dear Mary As I am still in the process of the DR learning to manage this I just take somac and adalat for the spasms. I am on prednisolone but that is for the lungs. I am hoping that when I go to the scleroderma specialist for the first time in three weeks that I will get some answers and soloution. The gastro specilaist wants to tighten the sphincter valve on the stomach but there is up to a six month wait on that procedure here and he says once he has a look at the progression he may decide that it is not in my best interest to carry out the procedure. So for now we wait and see and watch the damage worsen and in the mean time we find ways to cope. I will try the potato soup and see if I can tolerate it thanks again
  20. Sharonvandee


    Thanks Sherrill for the link I had a bit of a look and will look at it more later. I too have a lack of appetite which makes things difficult, because I could live on coffee and tea and not want for anything else. I often only eat because I know my body needs it to survive. Problem is the things I want to eat just won't go down and stay down so soup it is. I did get excited though when I started prednisolone, I got hungry first time in months even craved certain food, though this was short lived (2days) and I am back to not being hungry again.
  21. Sharonvandee


    I started getting syptoms to whilst I was pregnant with my forth child. Though the warning signs were there just before pregnancy the IVF clinic did a test that discover I had anticardiolipin anti bodies, when the pregnancy started to run into problem I was asked by a doctor if I had connective tissue problem. I told him I didn't know what he was talking about but after the pregnancy I continue to worsen and ealier this year the diagnosis came now we just need to work out how this will evolve for me.
  22. Sharonvandee

    Gi Issues

    Hey Margaret I have been thinking about your post for the last couple of days and decide to post a secound reply as I get a terribly hard stomach often after eating mainly in the later part of the day along with the hard stomach, I get terrible pain which has meant a few visit to ER, after a few test they discovered that it was cause by esophogereal spasm, the doctor placed me on ADALAT twice a day which is a blood pressure medication to relax the muscle a little. This has made it more bearable but it is still there. Maybe this is similar to what is happening. Just thought it was worth mentioning Sorry Gareth is suffering though I know how bad it can get
  23. Sharonvandee

    Gi Issues+ Blood Tests

    Hey Everyone Everyday I try to convince myself that this disease isnt what it is or that it will go away or that some how the dr made a mistake, silly huh? I started of with reflux whilst pregnant with my son now 20mths old and the reflux was that severe that I ended up in hospital many time with dyhydration. So after getting through that and the fact that bubs flat line at birth Dr said we would be right. When I was still sick after recovery period allowed for c section they blamed severe endometriosis and did a full hysterectomy, when that didn't work they said I had an umbilical hernia causing the problems. After that I developed esophegeral spasm and worsening problem related to the reflux. After a monometry test showed 150+ reflux in a day that specialist and general practitioner started to look at more surgery and I started to look for answer as well as these ongoing things I was cold in the hands and feet, losing my hair, had been diagnose with hughes syndrome, had whit calcinosis on two fingers, so the dr sent me off for lots of blood tests most of which are borderline or negative. Is this normal does it take time sometimes for these test to be all positive? I am now developing hoarsness in the throat and dysphagia which has me down to only eating soup and some ice cream and other fairly liquid foods. I try from time to time to eat normally but am quickly reminded that that just aint going to happen. In the last month I have had a problem with shortness of breath, which after trying all the asthma medication I have been placed onto prednisone. Just wondering if there is anyone else out their that has travel a similar path as I have yet to talk with someone that has and in Australia I live in a regional area so isolation is a big bummer. Anyone sorry about going on so long just trying to get my head around this. Thanks for listening and providing the only link I have to others with this disease.
  24. Sharonvandee

    Gi Issues+ Blood Tests

    Thanks so much for the support it is very much appreciated, sometimes the road seems long and lonely and the heart can get a little heavy as we become overwhelmed by all this is and all that is to come. That is where I am at feeling like life is being taken from me in some ways but on the other hand I have a wonderful husband and inlaws who give me the love I need, but even they admit they can not even start to understand this diesease and what is happening. But the people in this forum who have 'been there, done that' so to speak sometimes give that little piece of advice that might help, If not they give you the support and you know they understand because they are going through it too, often in different ways, but the same disease. Hugs to all the wonderful people who post back to questions or for support and and extra big hug to those who are doing it alone
  25. Sharonvandee

    Gi Issues

    Dear Margaret I suffer from dysphagia which makes swallowing difficult. I had a test done that show that the muscle itself works but is to weak and narrowed from repetitive bouts of reflux and severe vomiting. It feels like all food gets stuck till recently where I actually choke on the food so I have gone to a liquid diet till I have the gastrocope done and then the doctors will look at tightening the sphicter valve and widdening the top of the espohegus. I hope this sort of answers your question feel free to email me if you want more details