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Everything posted by Sharonvandee

  1. Sharonvandee

    Burning Stinging Palms

    Since both hands are being affected I spose that means I am going to meet a stranger who has money hmmmm I wonder if he is handsome as well :P
  2. Sharonvandee

    Our Pets...

    Erin We love our animals it helps give me something to focus on. I grew up on a farm and bought home all sorts of strays from the bush from turtles to rabbits to galahs. Some things never change would still like to bring home every animal in the pet shop except the rats and mice........ewwwwww
  3. Sharonvandee


    Where to start My newest hobby is miniature dollhouse collection and decorating. I am finding this a welcome distraction from the things happening and I have been taking my time to enjoy looking for beautiful antique furniture for the house. Our dreams of owning our own hojme went out the window when I started to get sick so this is now my dream home. I also enjoy scrapbooking digital and manual, collecting bears and dolls. they say some people never grow up well that is certainly true for me :rolleyes: Last but not least I love to cook guaranteed to cheer me up unfortunately I dont get to enjoy the fruits of my labour anymore. ;)
  4. Sharonvandee

    Our Pets...

    I adore animals and if I had my way we would have even more then what we do. We have two king charles Cavalier spaniels a blenheim and a ruby, they are very affectionate and give lots of love and enjoyment when you need it, 2 cockatiels which love to chat and are very friendly, tropical fish, and an avary of finches. Thats it atm as we lost our seahorses last week so I will be looking at getting something new once I get over that.
  5. Sharonvandee

    Aniticardiolin Antibodies

    Just curious Has anyone else been told that that have anticardiolipin antibodies? Are you being treated for it and if so with what I have rising level and they are doing very little so I am just curious
  6. Sharonvandee

    Going Off Prednisone

    Thanks for all the information I am currently tapering off and have had terrible pain and didn't realise that the pain could be caused by tapering off I will now be able to discuss it with the DR
  7. Sharonvandee

    Aniticardiolin Antibodies

    Thanks Janey That was a great article very informative. I only found out I had this problem when I went on the IVF program aftewr many misscarriages. In 6 mths my levels have gone from 6 to 50 so yet the doctors are sweeping it under the carpet and more worried about the other issues. That the problem when you get complex medical issues the DR start to get bamboozled and dont knopw where to start or what to treat first I spose
  8. Sharonvandee

    Take My Breath Away

    hang in there yeah I can do that. REST um whats that.......... with three kids all down with this nasty flu we have here in Australia this year, it has killed 9 children already so no rest here for now. but hey I can dream
  9. Sharonvandee

    Take My Breath Away

    We have had one of those weeks, kids have had this nasty flu and I still jave this cough that just keeps lingering on. I have seen DR's and had lots of test done then this week the DR ring and says that one of the test has come back positive for whopping cough, imagine my surprise and pardon my ignorance as I thought this was something children got and that if you had been vacinated that it was unlikely you would get this. So my poor lung are burning and I am totally breathless and this surely will not help the ILD. I hope the DR know what they are doing cause I feel like I am rosk bottom, turning blue and toatally breathless with not a sexy man in sight to blame.....haha cept maybe the hubby
  10. Sharonvandee

    Take My Breath Away

    Hey Sweet Yes it is a childhood disease and I was vaccinated as a child but like every thing it wears of with me . They usually treat it with Erythomycin but I am allergic to that so instead they are opting for doxycycline - double dose for a week and see how I tolerate it. It makes me sweat which is a change from raynauds in winter lol there is an upside to everything if you look hard enough. I got chicken pox at 30 too children bought it home and me and hubby got it real bad. Just happen to be the week my brother passed away and no one would come near me at the funerla no cuddles pout it was the pits, hubby had 100's on his face and said it was the ugliest he had ever felt. Just hope he doesn't get this
  11. Sharonvandee

    Nipping Symptoms In The Bud

    Here Here I can't agree with you more. BUT what do you do when you are the patient is proactive and wants things treated as they arise before it becomes a dilemma but I am struggling to find a DR that wants to treat me until the disease evolves more. So its like we will treat you when are in a debilitating state till live with it. Shame because I believe if we treat these symptoms earlier then maybe live spans will be increased and quality of life improved Just my thoughts
  12. Sharonvandee

    Ana Test

    Thanks for the rely because I was a little confused seeing this written as the rheumatologist that I saw said that a positive is a positive and doesn't ever change that is it did change that is was that the lab was an inferioir one and the tests werent being carried out properly. hmm no wonder I am lookng at going to another rheumatologist for a opinion
  13. Sharonvandee

    Trigger Fingers

    I had a visit with my DR today and was discussing with him that at times when doing things my little finger and thumb will lock into the position that they are in or will go out on a weird angle. He said it sounded like trigger finger and that he would try anti inflamatory drugs and if that doesn't work he will refer me to a surgeon. Has anyone else had this happen surgery? is it necessary?
  14. Sharonvandee

    Update - Good News For A Change

    Dear Janey So good to hear you are feeling better....I hope you continue to improve. Spontaneuous remission for all would be a modern wonder of the world and a welcome break for many
  15. Sharonvandee

    Frustrating Wait

    BIG HUGS The waiting game is the worse and most frustrating bit you know things are changing in your body but the blood test dont back it up and you are left feeling empty and alone and you begin to doubt yourself. I am in the same boat waiting to be sick enough for someone to do something other then muck me around with inconclusive, were not sure, you show some of the signs, your too complicated.......grrrrrr Hang in there and know you are not alone.
  16. 3 weeks ago I travelled to a clinic that deals with scleroderma hoping to get answers and a managment plan in place instead I am left feeling like DR, and specialist are a waste of time and now I even doubt myself till I go to do something that I no longer can or I get breathless. The rheumatologist at the clinic ran stacks of test and said she would take a week to get back to my DR and still we have no results so we continue to wait. The DR I have to see is a new one as my usual one is away for 5 mths (wouldnt it be great to have that long a holiday) and he at first seemed like we could work through this together but the visit yeasterday left me really bummed out. He talked about taking me of all medications incase they were causing breathlessness and then he said I think your breathlessness might be anxiety related and I want you to go on anti depressants, he has seen me three times each time struggling to breath and with a cough........hmm I am confused. He ordered more test a barium meal and chest xray to discover if I have reflux, which has already been diagnosed by a Gastrolenterologist after PH test. He commented you look less distressed with your breathing I tried to explain to him what has been happening at home and he just dismissed me all together.They dont see you when you can't breath well, your skin is blue, you can't talk because your thrat has given out and when your sitting eating mash or soup for the 20th time in a row whilst the family is having a roast. I dont know how to make them understand. Even the rheumatologist at the scleroderma clinic didn't bother to even look at my list of symptoms she didn't want to know she was just looking for skin involvment. It makes me want to not go to Dr and it makes me feel like none of them believe me and now I dont even believe me even though Hubby tells me it is real. sorry just venting and feeling a little let down by the people we are suppose to trust to take care of us
  17. Sharonvandee

    Pulmonary Embolism

    As posted in another thread I wondered if sleeping tablets were causing me to be tachycardia, short of breath at rest and sweating in the middle of winter when I suffer raynauds well after talking with a good friend of mine on here I have decided to post and ask if anyone has had a Pulmonary embolism as my DR has asked me to have a ct scan for one, she has also carried out some blood test d-dimer, esr, thyroid and fbe to try and work out why I am getting worse. I am anticardiolipin positive so this probably complicates things a little but I do use clexane injections when I need to. I am a little scared right now and as usual I try to find other things to blame for what is going on rather then looking at scleroderma and all its facets. Has anyone else had these if so is it a simple fix. I dont have the best situation as my general practitioner that knows my condition just went on holidays for 5 mths and the one I am seeing has admitted that she knows very little. That is why I just can't wait to get the clinic and get good advice from those who know and understand the condition, maybe once I am on a management plan the flare ups will stop and life will improve. Thanks for listening, sorry for venting.
  18. Great Article only wish this knowledge had been available years ago I had 12 miscarriages and many attempts at IVf before getting my precious son and daughter. When we went back for a third 8 years later the IVF team discovered that I had APS and put me on clexane for weeks before conception and then 12 weeks after conception and then we started it again 12 weeks before delivery and 6 weeks after delivery. It really helped it was the first time I conceive first go and carried the baby almost to full term. The advances in technology are amazing who know what the future holds for all of us with the medical advances
  19. Sharonvandee

    Blood Colour

    recently I visited a scleroderma clinic to get some testing done. The rheumatologist ordered a range of blood tests to be done, when the blood was taken it was a bright red colour and the technician commented on the strange colour of the blood and that it was more like the colour of arterial blood then that from a vein. He said he was going to look into it. Has anyone else experience this. Thanks in advance
  20. Sharonvandee

    Blood Colour

    The Dr has rang me and I am really aneamic which he says is why the blood is a bright red colour. When blood is from an artery it is usually bright red. When it is from a vein it is a dark blue/purple/black colour. So hopefully now it will return to normal lol what is normal?
  21. Sharonvandee

    Getting To Know You

    Hey Jane Welcome fellow aussie. You will find a wealth of information and support on this site. Often living here in Australia with scleroderma feels very isolated. I too have had to educate DR about the disease as many have not heard of it or know very little which at times is frustrating. I hope people here are able to answer some questions
  22. Everytime there is a special ocassion in our lives my hubby always struggles to think of the perfect gift he will ask for ideas and in the ends almost always works out something pretty special. This year he has outdone himself. We will be married two years soon and today he came home with a very special gift with the words in the card saying keep warm. He followed this with the best thing I have been given since I discovered this disease he gave me an electric throw rug so now instead of going to bed with the electric blanket to warm up we can sit together as a family and watch movies, I can use it for poker nights with out having to rewarm wheat bags, I can use it when sitting on the computer late at night cause I cannot sleep oh the many uses I will wear it out I am sure. The other great feature is it adjust up and down to stop over heating according to room and body conditions. We have been on such a rough road dealing with all the changes this disease has made to our lives and he again shows his understanding and love for me by buying such a thoughtful gift. He is truely amazing, I am truely lucky and this electric throw rug would be great for anyone out there suffering with raynauds.
  23. Sharonvandee

    Up For Auction Lol

    Sometimes with this disease you wake up and wham you have another symptom or complication, or medication. Well today I decided that I am sick of being greedy and I would like to share my disease and all it manisfestations with the rest of the world by offering up each symptom, complication and medication for auction, find a cure for all of us so we can live life a little lighter with less worry. ###### just for a moment in my little dream world, I can do all things I used to do including eat a yummy roast dinner followed by apple crumble with cream hmmmmm, I can take huge deep breaths and run round the block because I have so much energy and no pain. Suddenly I am awakened by the reality we call life, but it was nice to dream.
  24. Sharonvandee

    First Endoscopy

    Hey Big Girl The symptoms you are describing are what I used to feel, the gastrtoscope they initial did showed nothing it was only after a monometry test and a PH study that they discovered the real problems. Since then mine has worsened unfortunately and I am now booked for another gastroscope to access if I am suitible for more surgery to tighten the lower sphincter and repair a hiatus hernia. Maybe they will let you know more at a follow up appointment with your specialist. Good luck with finding out more, I know that I cried when after the gastroscope they told me nothing was wrong because I knew what I was feeling and suffering at home. I hope you get answers soon
  25. Sharonvandee

    Update At The Hospital

    Hey Celia Sorry you are not going so well. Hugs from a fellow aussie sufferer. Like you I have rapidly onsetting internal symtoms and it can be a little scary, but it sounds like you Dr is taking care of you and will help sort things out.