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Posts posted by Sharonvandee

  1. Hey Everybody


    Last time I posted I updated you all on my new challenge of TIA (min Stroke Episodes). Today I was given another challenge and Diagnosed with having Temporal Arteritis. This was discovered after the headaches I have been having since the mini stroke were still there and more frequent. I was also seeing floating particals on my eyes, along with pain and pressure to the tempal area. I was informed it all part of the Connective tissue stuff but I tell you I am so tired of being challenged it seems never ending at the moment. The scariest thing is this can take your sight, so onto high dose prednisolone for six mths ( oh goody not) to try and avoid that.


    Anyone else out there been down this road? I would love to hear how they dealt with it as the idea of steriods is not one I want to visit.


    As a extra blow he informed me that I have a double hernia that needs fixing (eeeeeeeks)



    Secretly scared Shaz

  2. Wow this really is a big issue for many of us and made trickier I think by the fact that food is our enjoyment, relaxation, its our social activity and our reward or comfort, so when the skids are put on life comes to a bit of a temporary halt. :wacko:


    I personally can not handle any raw fruits/vergetables unless juiced, which I find is a great source of goodness(I self-juice, not buy commercial)


    I can no longer tolerate coffee, or my beloved chocolate :crying: .


    I agree it is trial and error and working out what stage your body is at, but we are lucky to have others to share with and get ideas from so we feel less isolated and alone.


    Kindest regards Shaz

  3. Hey Everyone


    I hope everyone is well and enjoyed the holidays with loved ones. I hope the New Year is off to a good start.


    I spent New Year and the following four weeks in hospital due to various issues.


    I was initially in due to severe dehydration and malnutrition. I believe this is due to my inability to eat and keep down anything much more than liquids. After a lot of testing they finally came to the conclusion that my issues are due to severe gastroparesis, little motility of the esophagus, lack of saliva due to Sjogren's, all stuff which I had already told them. So I was sent home with Cisapride and the talk of trailing a nasogastric tube before putting in a PEJ feeding tube. I am so not looking forward to this but know now after the last few days it is inevitable.


    I went home only to return in under a week having TIA or Transient Ischemic Attack also know as mini stroke. This was extremely scary for us all and certainly a warning to sort out these health issues. After a lot of tests and talking, we realised I had been having them every few weeks but never so severe and noticable. I am now permanently on Asasantin SR for life to lessen the chances of it happening again, or next time having one with more long term damage being done.


    I am hoping to get to the city and see Sclero specialist who will better know the best course of action and I am hoping that that will happen sooner rather then later. It certainly made me realise how much more precious life is.


    Has anyone else had TIA?What treatment did you get?




  4. Hey Summer


    I know how frustrating this can be. I was going through similar issues to you and had many gastroscope that where all clear. Recently though I got to the point where liquid where all I could tolerate and only very small amounts. This landed me in hospital for three weeks where they finally did a gastric emptying study, which in the specialist words was abysmal. I have now been diagnosed with Gastroparesis and take cisapride for now to make symptoms' tolerable till they work out what to do.


    Dont give up, if need be get a second opinion from the Scleroderma Doctor.


    I wish you all the best in finding something that can help, I know it can wear you down and strip you of you energy and zest for life.



  5. Hi Vanessa


    I too suffer from this part of the condition. I have been told by specialist that it is because of Sjogren's. I will often wake up dry coughing, almost feeling like gagging because it is so dry.


    I use a spray which make like synthetic saliva, this is far more beneficial than drinking heaps and still feeling dry.


    Might be worth a try.




  6. Hey DustyGal


    Welcome to the forum, you will find all the people here very supportive and always willing to listen and give good advice.


    I am glad you are staying so positive. Horse riding certainly is a great way to rejevenate the soul.

  7. Hey


    Been a while since I have been on due to computer and health issues.


    Last time I updated I had just had a nissen funduplication to fix issues with reflux and aspiration pneumonia. Initially the operation was a success. I was feeling like I had done a good thing. Five months down the track and I have mixed emotions about the operation and this disease. I haven't had a chest infection or pneumonia since the operation which I am so happy about and I am hoping this will help preserve my lungs a little longer. The other positive from the operation has been weight loss which hopefully will help with the strain my body is under. Unfortunately, though, since the operation I can no longer eat and survive on a liquid diet, lots of juices and protein shakes. I can only have half a glass at a time. Even this style of diet leaves me in pain not to mention the regurgitation of whatever doesn't get into the stomach first time round. I am now starting to lose muscle mass as I can no longer eat the dietary elements I need to sustain them. I have seizures and black out from low sugars and with summer now being here I am starting to have issues with dehydration. The Gastro specialist says I have lost most of my motility in the entire gi tract. Hence the severe gastroparesis. I am booked in in the next couple of weeks for dilation, so here's hoping, the only concern is if it is opened too much then I will be back at square one.


    I have also been started on Methotrexate and Motilium.


    So far no side effect from the methotrexate other than being tired three days a week and bad nausea.


    Has anyone else had dilation? Did it help?

  8. As many of you may know I live in Australia where it is currently winter. I live an hour from the snow. We recently bought our own home which had no heating at all. I had been suffering severe Raynaud's attacks to the point where I had little quality of life and was constantly under and electric throw rug just to survive the day. It was warmer outside at 10 degree celcius then inside. This along with painful arthritis meant that winter was becoming a depressing time of the year. My parents were visiting last week and saw the effect it was having on me and was devastating that it was diminishing my quality of life so the following day they came home from shopping and handed me a gift certificate that allowed me to get Gas Ducted heating through out my home.Well what a difference it has made the kids said I am happier and I can now move freely through out the house. Suddenly I have some of my life back. I was so stunned by the generosity that I cried. They still don't understand why I continue to say thank you every time they ring. This was life changing generosity.I just wanted to share some good news for a change we all need some hope to lift our spirits. I know that this disease has certainly taught me to appreciate all things no matter how big or small.

  9. Jeannie


    Got to laugh at your game and is similar to what we have been doing to cope I was devastated hubby says well at least you are alive, at least you dont need a feeding bag yet, at least when you are old n your teeth fall out you will have no problems with a soup and mash diet cause you will already be used to it.


    Got to love em for there humour

  10. Thanks Jeannie


    The webiste was very informative the seminar/webcast was invaluable giving me lots of information that helps me to put the pieces together.


    I am trying to see the positve in all this but at times that can be hard silly me hoped I would get rid of a majority of the symptoms and live a Normal life lol What is normal? I now have to reevaluate and change that difinition.


    I am extremely lucky though that my family is so loving and supportive it must be very hard for them at times I am sure.


    So thanks again (((((((Hugs))))))))

  11. Thanks so much to all those who sent well wishes to me they were very much appreciated. I am sorry I havenet replied till now.


    I have had my Nissen Funduplication/Hiatus Hernia repair. After some drama post surgery Heart/Lung/Stomach/feberal temps I am slowly recovering. It is nice not to have the acid burning out my lungs and ruining my teeth. Lol not to mention the weight I am losing.


    Unfortunately it has worsened the symptoms of my Gastroparesis to the point where soup n liquids is the best I can managed. Mashes and medication cause all sorts of issues from spasms to severe stomach pains. I can only drink half a cup of liquid at a time and dinner is now three to four tablespoons of soup and I am so full. The Gastroparesis means that I never get hungery and only eat as I know it is essential to survival. There are days when 1 meal is all I manage whereas the dietician says 8 meal is what I needs.


    Is there anyone else out there with Gastroparesis either after surgery or before? What is the long term treatment?

  12. Thanks Red


    They have booked me in for 7 day stay.


    Not sure yet if it will be open or Laparaoscopy - I am hoping lap. I too have a swallowing problem already, so I'm not sure what to exspect with that and surgeon isn't either. I will also be having my Hiatal Hernia repaired. I know they think it will take about three hours and said it will be complex but I also now that if I don't get it done, my health will deteriorate a lot quicker.

  13. Nan


    No I dont have GAVE, I do have gastroparesis and both the top and lower spincter aren't working so here hoping I say.


    Thank you all for your well wishes.


    The anesthesiologist has been good. He is going to try patches with me to warm me and warned me that if it goes to open surgery which there is a possibility due to having lots of adhesions from previous surgery, he will need to put me in ICU for oxygen therapy. He said that the up side is that my lungs and heart can have a rest.

  14. Been a while since I have been on the site due to a life less then chaotic


    In the past eight weeks we bought our first home and moved in. Since moving in hubby has been busy renovating the house of dramas :lol: . We have contended with gas leaks, leaking roof, termites all whilst my dad took sick and mum had surgery.


    To top it all off we got a call last week for me to go into hospital finally for my Nissen Funduplication. I had come to terms with this as my GERD continues to worsen keeping me up at night. When I went for the pre-op visit the anesthesiologist gave me some scary news. My lung capacity had dropped from 85% to 60% in four months. Because of the condition of my lungs he very clearly stated that there are possibly huge complications with the surgery now, but that not doing it could mean further decline. They will be taking extra precautions but I am freaking out.


    Anyone else had a similar experience or this surgery good or bad I would love to hear from you.


    Wish me luck.

  15. After a long wait and a few test I finally have reasons for being so breathless. After looking at my ct scans he informed me that I have early stage interstitial lung disease (ILD) and pleural fibrosis, this along with moderate scoliosis invading my lung space and deforming the lung shape, and the fact that I am aspirating because of my reflux, so at least now I know what the problem is. He wrote up a management plan, kept my scans to share with a fellow lung specialist. So now it all begins with regular monitoring and treatment .


    Has anyone else got these issues and if so what sort of treatments are out there?

  16. I have read a lot of article that connect endometriosis and PCOS to auto immune issues. I have had PCOS for 15 years and was diagnosed with endometriosis 9 years ago. I had a hysterectomy 3 years ago for endometriosis issues. Even that has not gotten rid of the disease as they have now found endo in other parts of my body. Last year I was diagnosed with mixed connective tissue disease and now scleroderma CREsT.


    So I definitely think these conditions are all inter related

  17. Hey Clem


    I too get bad Raynaud's from a cold bed the electric blanket is my best friend. I put it on the bed in autumn and it stay there till early summer. Wouldnt survive with out it. I also have an electric throw rug which gets me through the colder days when I need a quick de frost.



    Take care

  18. Hi Maddy


    I suffer severe Gerd. I have lots of symptoms and complication from it not being treated.


    To answer you question about the PH test. I had a 24 hr probe. Because of errosion and having a little bub I found it awkward and uncomfortable, but not too unpleasant once it was in place.


    Good luck with it.

  19. Celia


    on a bad day they are an 8 - 9 and I can barely walkk on them for the pain that is causes. On a genreal day a 3-4 with low level pain. On the general day they look like a sprain ankle on a bad day they look like oedema when I was pregnant and the onlything I can wear on my feet is my clogs. On the bad days the whole foot from the toe back is swollen.