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Melissa in Australia

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Everything posted by Melissa in Australia

  1. not frustrating so much as incredibly sad. I just feel so incredibly sad
  2. I am still in the stage of investigative testing to see what actually is wrong. I have several cardiac related tests and scans happening over the next several weeks. The stage 2 sarcoid in my lungs is known. The chest pain, tachycardia and bracicardia are considered symptoms at the moment . There is much speculation amongst specialists if it is actually something wrong with my heart ,or possibly sarcoid in my nervous system sending crazy messages, or some bigger thing they have yet to identify
  3. this. When my DH took some of our children to Canada to visit his family. the children had to carry a permission letter from me that I had given him permission for DH to travel with them out of the country. When he applied for the visiting visas for the children the Canadian embassy rang me to make sure I was aware. I know that this is Australian and not US. but it was the US border patrol that checked all the documents and my letter while they were in transit. Dh was a Canadian Citizen at the time and our children are dual citizens Many countries are very careful about one parent stealing children and taking them to another country . it is very very messy trying to get children back afterwards
  4. Well it wasn't the beta blocker Pulse was only 45 yesterday while I was up and about. I fell and DH took me to the local hospital . Back home again
  5. So please to hear such terrific news
  6. Saw a very good locum yesterday afternoon. He knew about sarcoidosis. Which is always a good start. Some don't. He said to stop the beta blocker and see what happens. So I did, it helped. He said to call an ambulance if it goes below 50 and I have symptoms as the paramedics can do my obs and either reassure me or take me to hospital whatever is needed. I am still on the other heart medication for tachycardia.
  7. Honey isn't vegan. Thousands of bees do die on the process of extracting. Even when being very careful. We have hives
  8. There were only 2 channels available when I was a child. And we had a black and white TV
  9. What dh and I ended up deciding late at night was if it went below 50 we would call an ambulance. Then I slept like a log all night. When I looked in the morning it was mostly between 49 to 51 all night. Have a locum appointment today. My cardiologist is at the city hospital. I am hoping the locum calls him, or at least a cardiologist from the pool at the city hospital. I have many tests coming in the next few weeks including Holter monitor and a few scans before my next cardiologist appointment end of March. City hospital is over 400 km away
  10. Forgot to add I am on 2 different heart medications to control my pulse. That was because of all the tachycardia
  11. Went to bed and felt very cold. Funny head and chest pain. Took my pulse and it was 38 What would you do. What should I have done? What I did was go get DH ( he stays up later than me) and told him I didn't want to die alone ( panic on my part) . I went back to bed dh came lay down beside me to keep me calm, and pulse went up to 45. And I decided it would be best to not look again. I did wake up today and am still alive 😄 my pulse is back to between 70 and 100. I rang the triage nurse at the hospital this morning and she said I was meant to call an ambulance when my pulse goes below 60 But it has been going down to the high 40s for the last few nights. Am I just talking myself into a panic about further heart failure..... What would you have done or rather what should I do if it happens again tonight? I am getting chest pain multiple times a day and have for months. If I call an ambulance tonight they will take me to the hospital 100 km away as the local hospital no longer has doctors. I don't want to go back to hospital
  12. Not anything the same, but DH has been substituting out the pasta and using either cabbage or his current favourite Bok Choy. So basically the Bolognese sauce on Bok Choy with a very tiny bit of pasta. It is ok.
  13. I am not adding it up, but I am outside about 2 hours a day in bits and pieces. Does it count being on the verandah? Before getting ill I was outside easily 5 hours or more a day
  14. Yes high fevers for 2 weeks then 10 weeks in hospital extremely ill. The medication overlapped the hospital stay by 4 weeks. I didn't start having the rapid hair falling out until I got home.
  15. My disease includes crippling fatigue. The medication did not help with energy levels at all. Which was a great shame
  16. That is interesting. I was loosing fistfulls every day. I have hip length Hair so it was extremely noticeable. I was getting. It has only started growing back in the last 4 weeks and that is exactly when I stopped the Prednisone But like I said I really can't tell what is my disease or what is the medication. Apparently I have an unusual presentation of sarcoid and symptoms way out of proportion of level of condition. Still under investigation
  17. Don't you just love it when your adult kid sends photos like this. Recently one of mine sent me lovely photos of his arm he had "just nicked with the chainsaw" it looked like a roast pork that had been cut ready for cooking. He is an arborist so cut it while up the top of a tree I managed to convince him to go to the hospital but once the doctor said he needed a skin graft he walked out. Yes it healed, amazingly , as all he did was strap it up tight and go back to work the next day.
  18. When I was on it I was also prescribed a stomach protector medication . The weening off took 3 months, with a gradual decrease every 10 days. I don't know what were side effects of the medication or my disease. I had rapid hair loss, weight gain, and hand tremors I do know it made me very teary. For the week I was on 100 mg I cried the whole time I finished at the very end of December After stopping the medication I slept for 3 days. My hair has started to grow back. I thought the hand tremors had gone but it started when I was travelling on public transport to specialist appointment on Monday. So maybe it is part of my disease and triggerd by stress. I don't know.
  19. Sounds terrific Rosie I am managing to do a little gardening again, about an hour a day. mostly I have been weeding the flower garden just in front of the house. I have been also planting seed in the polly tunnel. Lots of marigolds. Some snow peas and Bok Choy. DH is doing the veggie garden this year. ❤️❤️ We are harvesting a huge variety of fruit and veggies. All that we can eat and more
  20. I think I might do this... But I mostly don't get to talk in real life to anyone except DH. And he is the main talker. So if I do happen to get asked a question by DH and he actually waits for an answer then I have all these pent up words that just burst forth . A yes or no answer doesn't really cut it if that is it for being able to talk for the next few hours.
  21. Thank you very much. I had a trip full of adventures. A city tram I was on that was meant to take me directly to the train station was diverted because of an accident. So I ended up in the middle of I had no idea. And it turned out to be a couple of city blocks away from the train station.as I can not walk much and am using a walker this was daunting, out out of nowhere the kindest lady came up to me and asked where I was going and walked with me to the station. Your prayers must have sent her. She was an angel I am sure.
  22. I am just over half way through a crocheted flower cardigan. I decided to make a linen lining and attach the flowers to it and to each other, so there will not be any sagging and stretching The good thing about this is I have pinned all I have made on and can see how many more I need to make, and can move them around to spread out colours and flower designs as I go Hoping to have it finished by the end of this month
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