Hello to all : )
I am a new member and live in the UK. Seeing that there was an Australian SS group on the Health Unlocked site I thought it would be lovely to make some new friends and exchange views.
I`m especially interested in SS and the effects on older women. Purely selfish reasons but I hope that the subject may help others as well as myself.
The most annoying thing was what happened at menopause. We see so much on TV on so many subjects to do with the human body, and yet menopause is still something of a taboo, as is the
There seems little information (still) on what to do with us when hormones drop/sleep wont come, and dryness becomes an even worse issue for many of us.
After almost 30 years I had imagined that GP`s would be so familiar with SS that there would be some sort of process to fast track SS us so that we did not have to go from department to department by a snail post referral system. Even then, no-one seems to ask what other problems one might be having. I do wish they would take a medical history from time to time and refer internally. It would save the NHS thousands of £`s.
My female dentist talks about all topics to do with dryness while she is working on my teeth - wonderful : )
We used to have women`s hospitals around the UK, but I believe the last one is in Liverpool. It would be so nice to go for one appointment at onset of menopause with a female consultant Rheumatologist and Gynaecologist who has good knowledge of SS. I have only met two female Consultants but the appointments were so beneficial and productive I still remember thinking....why don`t we have one of each at our hospital? That`s not to be disrespectful to the nice male Rheumatologists who help so much. Its just that women talk so freely about our female anatomy as though we`d known each other for years.
In the UK the GP deals with all the menopausal problems ( I have found), and it`s especially difficult
to sort out all the issues women face in a short appointment....then more as each symptom comes to the fore. It makes us look like neurotics going for this or that or the next thing.
I had a visit from a young woman several months ago. She was going to try to help me find a home help. I said that I had SS and had some papers she might like to read. `Oh, I know all about it` she replied. It`s very rare and I have just been diagnosed with it`. I asked where she had been for the diagnosis. When she told me I asked whether she had been told about the BSSA. What`s that? she said. I felt so disappointed that this lady was left feeling she had a rare condition and not a mention of support systems. She was seeing other SS patients on her rounds and had no information to give them.
I was/am semi housebound and would like to talk about things with women of the same age. I do have a sense of humour though so please feel free to have a laugh at anything I have written about
or a moan, but do drop me a line if you feel up to it.
I have rambled on a bit so I hope it`snot too long.
My other interests are jaw problems and dryness
Radiation therapy to eye area/problems and fatigue afterwards.
My hobbies are painting, writing, gardening, DIY when able.
Oh, and part sighted...so excuse all the errors :/