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night owl

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Everything posted by night owl

  1. Hi I have a vein road map mainly across my chest and I have been diagnosed with Livedo Reticularis. My journey with scleroderma started when I was in my early teens and I am now into my fifties. I can be light hearted and say my vein map its like a motorway system which has nothing on me but people’s comments who don’t understand can be very difficult even at my age. How does your daughter cope with everything? Night Owl
  2. Just out of interest does growing older have any impact on the frequency digital of ulcers? The older I get the less I seem to have. Is this an age thing?
  3. Planted the beans for this year in pots, outside in March in the warm but no sign as yet they are going to grow. Is this going to be a year without runner beans?
  4. Hi It has been my choice to take ibuprofen as I find it very beneficial for joint pain, never been told not to take it but as I already had the strictures in the oesophagous, heart burn and swallowing problems before I started it, which might make a difference. My Rheumatologist put me on a PPI (proton pump inhibitor) to help improve the oesophogeal problems. The balance between the medication has been fine for me so far. Night Owl
  5. I got to the last vial and then things began to stop. I don't think I need to say anymore. My general practitioner has asked to see me (unusual) following the tests, again more In trepidation. Night Owl
  6. Hi I have free prescriptions because of an under active thyroid, an auto immune condition. You could say it's one of the best benefits from having Scleroderma. It's saved pounds over the years. Apply for your free prescriptions; you will not regret it. Night Owl
  7. Hi Liz I have never been offered this for dry eyes - just false tears which applied often and are okay but are tedious . Do the puncual plugs help? Night Owl
  8. Dear Louise It must be difficult for you with your daughter at 19 and for her also. Does she post as well? Night Owl
  9. Hi everyone, It's the prodded around with the needle which is always a bad sign. Going to see the phlebotomist tomorrow and my list of blood tests has grown as it’s the Rheumatologist ones plus the General Practitioner ones; I reckon that must be five vials. I hope my veins will oblige - such a simple thing for most people becomes such just a major thing! In trepidation for tomorrow; not a big fan of needles. Night Owl
  10. Wisdom teeth are good; it's a few more teeth to be able to chew on. Have a happy holiday. Night Owl
  11. Hi Christine Have you parted company with that troublesome tooth? Did everything work out okay for you? Hi Jefa Your post was good and your experience is better than some advice given by dentists. Night Owl
  12. I had my usual appointment with the Rheumatologist and then my veins said I am not giving you any blood. Somebody tried to do the usual blood tests after a consultation. The carer had drawn blood successfully on more than one occasion. The tourniquet was applied, on both attempts, prodding for the vein happened, oh yes you have something there but oh no. It did not go well; no blood was to be seen until the needle had been withdrawn. No bruise. I like to think my veins saw the needle that was heeded their way and then they said no! They must have been punctured. There was no third attempt. There is no phlebotomist as part of the clinic and on experience they are more successful in getting veins to oblige. In the past the Medical Staff have been asked to take blood when my veins have said no but it was from the back of my hand - ouch! I am going to the general practitioner’s for my bloods this time so I hope my veins say yes. How many attempts do you have to have for routine blood tests?
  13. Veg and bugs just seem to go together. I'm going try beans again this year and hope - no holes in the leaves this time. I am still keeping garlic and washing up liquid in reserve. I'm going to plant Marigolds though.
  14. Hi That is a move Bristol to West Yorkshire. From previous posts yes, I have had Iloprost many times and the years do blur into one. I think you are right; I have had this for more years than I have not and I was asked recently how it affects me. I found it difficult to answer as I know my limitations and how to cope but I cannot remember a time when I did not have them. I have no comparison from the norm to make anymore. I have been treated at many different centres over the years and it is difficult to change where you are treated but you always have the option to be referred elsewhere. It's like taking a first step ................. Night Owl
  15. Hi Iloprost is a life line for me at times and I find it helps a lot. Yes there are side effects but I have learnt the best way they can be managed for me. My 'cocktail' is pain medication phosphate and paracetamol for the headaches and ondansetron for the sickness all prescribed by the medics. Where I am treated I go home after treatment with my cannula in place, ready for the next day. I have five days of treatment at a time. When I way up the pros and cons of the treatment iloprost always seems to win. I have not been able to get on with Prozac even though I have tried it more than once. Prozac goes had and hand with insomnia even when I have tried taking it a different times of the day. I am sure there will be others who have had treatment for the side effects of iloprost. Only you can decide like a Shakespeare quote to be or not to be or in this case to have or to have not. Night Owl
  16. I have always been advised to hang on to my own teeth as long as possible but its not that easy. With the lack of saliva due to Sjogrens most of my teeth have been crowned but I do have a gap or two perhaps four or five, even more anyway my dentist did say I could have implants but not sure if this would help with chewing. This option of implants I have declined so far. It’s just the thought and the cost. A dentist who specialises in dental care for people with Scleroderma and Sjogrens would be good and covered by the NHS.
  17. Hi Just trying prozac for the second time. I feel the improvment with the Raynauds but can't sleep. Three days without sleep and I have given up again. There are just so many sheep you can count!
  18. It turned out to be a good year for beans but there are just so many you can eat, freeze and give away. Next year - not so may plants. It was also a good year for plums, apples and tomatoes Something different for next year I think, but what?
  19. Tattoos are very artistic and they are the thing to have at the moment. I have looked at wonderful art work on people and thought the work was on par to some paintings. Tattoos, if I had one in my extremities, even above - I just know I would not heal. Think carefully and ask yourself how good your healing is. Will you heal if you had one done and what the consequences would be if you didn’t?
  20. I thought the explanation of Sclero was great. I wish this ad been around when I was first diagnosed and even a few years after.
  21. My next car is a few years away so reality is go for a practical solution, Neoprene here I go. But you can dream.
  22. My Dermatologist suggested I bought a car with a heated steering wheel, sensible advice. The next time I go shopping for a car I'll only be buying it for the heated steering wheel. I wonder if nice and sporty, automatic, something not too low so you can get out of it, tinted windows, has to have style, soft top, easy to park, heated front and rear windscreen (great in the frost and snow) a heated steering wheel not forgetting the heated seat all go together.
  23. Hi Gloves are can be hit and miss. I like leather gloves with a lining of some sort and they’re good to drive in. Ski gloves in the snow are great but don't like the bulk! You can get heated gloves attached to a power pack but again the bulk! Try any suggestions and see what works for you. Gil
  24. Yes it was infection. Weeks of taking antibiotics and things are a lot better, now its time to watch and wait with hope the infection does not return. On the good side, my mobility is improving. Gil
  25. Hi KeiKei, I have had severe Raynaud's since my teens and time has progressed. My hair is grey but I have never tried GTN (Glyceryl Trinitrate) patches. I would be interested to know your thoughts on them. Gil
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