Hi All,
Just wondered if there is anyone else here from Victoria, Australia?
Keep smiling everyone,
Jo 😀
Yes, I am.
I'm in the South-East suburbs of Melbourne.
I live in Perth, WA.
I'll be visiting Frankston South, Melbourne next March.
I don't know it F.S. is near you Victorians.
Lotus1
Hi Dawnmist and Lotus1,
I live in the south east as well, Warneet which is quite close to Frankston.
How do you feel about trying to arrange getting together?
Cheers,
Jo
I'd be quite happy to. I'm in Doveton (near Dandenong), so Frankston area is only about a 15-20 minute drive away. I do work during the week though - normally 4 days a week, but it's a bit disrupted at the moment due to physio/hydrotherapy and various specialist appointments. Fridays would be my best day to aim for a meet-up. :)
Hi,
A Friday would be best for me too. I won't find out until next week about my workload from now till Christmas so I'll get back to you.
Cheers,
Jo
I'm in Sydney. Great to see you can meet up. :)
Hi,
Dawnmist I only have Friday 9th Dec between now and xmas. Would that suit you?
Hi aussie mum 😀
Cheers,
Jo
Hi Dawnmist & Bigleyj
Bigleyj, I'll be in Melbourne March 1st to 8th 2017.
I'm getting excited re seeing you both.
If it means 2 separate days to see you both I'll fit in.
One day with the 3 of us would be nice though. See how things go.
We sjoggies must stick together lol
You'll need to tell me where to meet nearer the time as I don't know Melbourne at all.
Yes, hello Aussie Mum. It would be nice to meet you also. Doesn't seem a goer though :(
I see I'm the 'oldie' at 58 yrs so please take care of me on our visit ha ha
Take care everyone.....
Hi Lotus1
Frankston is just a 20 minute drive for me 😀
Just remind me a week or two before and we will make arrangements.
Sitting in Dr waiting room at moment...sinus infection.
Cheers
Jo
I'm sorry about the delay in reply Bigleyj, I must have missed the forum notification.
Friday 9th in the afternoon would be good for me too. Any preferences for where you'd want to meet up? I have a hydrotherapy appointment from 9:30-10:30 in the morning at Karingal (though it's likely to run late, so call it an 11am end), but I'm happy to drive to wherever after that to meet up.
Cheers,
Janeene.
Hi Janeene
How about an early lunch at 11.30 at Featelli its on Cranbourne-Frankston road?
http://www.fratellifrankston.com.au/
Cheers
Jo
Quote from: Bigleyj on November 09, 2016, 12:12:27 PM
How about an early lunch at 11.30 at Featelli its on Cranbourne-Frankston road?
http://www.fratellifrankston.com.au/
Looks good to me!
C u then then 😀
. So fun to watch you plan a get together on a continent so far from the USA. Let us know when you get together, what the weather is like and describe your meal. It is very interesting to see how things are around the world. Irish
Yes, I agree with Irish, good to see you meeting up Janeene & Jo.
Do let us know how the day/meal goes.
I can't wait to see you both while I'm in Melbourne in March if possible!
Yes, will remind you when I'm going....
Still haven't accommodation, but don't want to be too far from Frankston South so we can see hubby's sick daughter daily.
Hope your sinuses are much better Jo.
Do you mind me asking what kind of work you are both doing?
My dry eyes have had enough of office work. I keep away from the computer as much as possible.
Eye drops, bathroom & lunch breaks are great lol
My work colleagues are sympathetic which I'm thankful for.
With my big tinted glasses I get 'sympathy' from people coming to my reception desk, can see it in their faces.
Others think I'm being fashionable I'm sure ha ha
I'm applying for the disability pension, mmm paper work, appts, specialist visit. GP says she will back me up all she can.
My GP thinks I'll have a fair chance of success getting dis pens, especially having had parotid gland lymphoma with possibility of more with my dry mouth in my work environment - sure hope not!.
Gov't is making it difficult to get onto the disability pension though which I fully understand.
Thinking of you all in the fun times & not so fun times.
Lois
(Lotus1)
I work 4 days a week as a Software Developer. It is a job that I really enjoy, and so far has been one I could manage to continue to do as the progression of Small Fibre Neuropathy has restricted what I am able to do. The company and people within it that I work with have been fantastic, and I want to stay there for as long as I can manage to continue working.
So glad you enjoy your work Dawnmist.
Hope you get the help you need to stay working.
I work with the Police Service as a Public Servant 4 days a week, don't work Wednesdays.
I'm working with the District Superintendent, Inspectors & a few other public servants at present.
I enjoy working with the Police.
My dry eyes/mouth have had enough of the office environment though as I mentioned in my previous post so I'm hoping to be out of the environment some time next year.
Do you have dry eyes/mouth also?
Lotus1
Some, but not severely.
The dry eyes at the moment are more due to some of the Meibomiam glands having been destroyed. This meant I could keep the remaining ones functioning "enough" to get through the day ok by using fish oil, so I'm not too bad there.
Dry mouth is definitely developing. I run out of moisture talking, have trouble swallowing anything dry, lose my voice frequently due to not enough moisture in the throat/vocal cords for them to be able to move properly, etc. But just sitting quietly I will usually have a bit of saliva under the tongue.
Yes, my mouth is a problem too Dawnmist.
Sick of chewing gum, using gel at night, drinking heaps of warm water for the throat.
Herbal eye drops help my eyes at night only (mostly don't need cream).
What a shame I can't use them during the day.
Ambrotose complex, Plus etc has fatigue, flu achiness & other thing symptoms under control.
It seems nothing helps the dry mouth/eyes to any great extent.
I'm still trialing things though as with ambrotose complex I found it pays to persist trying.
I'd have been applying for the disability pension 8.5 yrs ago if I'd not tried glyconutrients.
I gave up with Dr meds ages ago, no help at all, side affects.
Take care until we meet hopefully.
Hi,
Janeene and I went for lunch. It was windy and cold. Terrible weather for summer. Next time I'm just getting dessert though.
Janeene, you are a lovely person. I dont know how you cope. Especially with all the travel. You are inspirational actually. I'm so frightened of the pitential of what this disease can do.
I think i waffled on a bit but oh well.
Lotus1 I hope we can catch up in March. Did you find somewhere to stay? I work 25 hours a week as a compliance manager for RTO and nonschool senior seconday provider at Narre Community Learning Centre. It's challenging and rewarding.
Jo.
Thank you Jo. It was lovely to meet you, and I really enjoyed sitting down to chat with you over lunch & coffee. An afternoon tea consisting of coffee and a dessert next time sounds like a really nice idea. ;-)
I would have called our chat a nice, peaceful ramble rather than a waffle. Waffling implies that the people listening to you were bored, and I certainly wasn't. It was interesting to hear your experiences, and contrast both how similar some aspects of the disease have been with how different other parts are.
For the travel on public transport...I have always loved reading, and I can doze on the train if I am too tired to read. Or I can have my phone read an ebook to me while I do some crochet, and disappear into my own little world for a while. It gives me a slice of time when I can zone out for a bit, with no demands on me other than to remember to get off at the right stop.
My 81 yr old neighbour is in Melb at present, returns home tomorrow.
I'm still very much looking forward to meeting both of you next March.
Glad the two of you had fun catching up with each other.
Right now, my eyes are saying get off the computer!
Lotus1
Lotus1 - have you tried Pilocarpine for you eyes or mouth? You need a prescription. In Aus it only comes as drops for eyes but my rhumy told me to use 2 small drops in mouth to generate saliva. Worked very well even though it tells your whole body to go into a sweat.
I would think quest apartments probably the best to stay in Frankston.
Janeene, I love the word peaceful. Yes it was. After xmas I'm going to Tassie for 10 days to stay with my cousin and that's what I'm looking forward to is the peacefulness.
Cheers,
Jo
Never heard of Pilocarpine, Jo, thanks.
Not sure about the sweat part, not used to that!
I was thinking guest apartments seemed best, see how we go.
Concentrating on travelling to Albany (6 hrs away) with hubby on Thurs to visit my parents over Christmas as my father 87yrs has had a bleeding cancer tumor removed as well as intestines surgery, sudden diagnosis & op. Just before op he had a blood transfusion & iron infusion. A lot for anyone let alone at his age. He hasn't been on any medication to date & was riding his bicycle over 50 kms a day so he's done very well. Mum is very tired. Our accommodation is next door to the village where they have just moved to, with a stream between, very handy.
One more day of work then I'm free for a week, yay.
Lotus
Hi Melbourne ladies!
Only 8 weeks today until we fly to Melbourne.
Phoning someone today re accommodation in Frankston (apartment attached to family home), may be away for school hols & not answer phone.
Happy New Year!
Lotus1
Hi Lotus1
Looking forward to hearing from you.
Cheers
Jo 😀
Hi Jo
Yes, I'm looking forward to seeing you and Janeen soon!
We've now booked in at Frankston Guesthouse, 12 Bondi Ave, Frankston from March 1st (arrive 6:30 pm) to 8th.
Let me know what day suits to meet up. Hopefully I can see you both at the same time.
Wonder if there is somewhere near the guesthouse?
Will know when we arrive at our accommodation.
I will now send the same message to Janeen and see what we can work out.
Thanks for keeping in contact, exciting!!
Look forward to hearing from you.
Lois
I'm available to meet up on the Friday 3rd/Sat 4th/Sun 5th.
Looking forward to meeting up with both of you (hopefully) :).
Cheers,
Janeene.
Sounds great, Janneen.
We'll see if Jo can meet any of these days.
Will be nice to see you both hopefully as you say.
Lois
Hi everyone,
I have just joined forum and thank Dawnmist very much for her message of where to find your posts. I am not forum trained as yet! This is the first one I have been on. I joined as I felt connected to what I read of your experiences in the posts. The quest to find just something that makes life more comfortable. The cost of one health consultation after another. Mostly, the sense of hope and willingness to keep going regardless. To give you a bit of a picture of me, I was diagnosed with Sjorgens, SLE, and various other complaints about 8 years ago after not being diagnosed for several years before. I am a single Mum of 2 healthy teenage great kids. I work full time in Education.
I can relate to health impacting on job choices and others perception of you. My eyes blink lots due to eye sensitivity, dryness, glands not functioning. This seems to put off prospective employers even though I am well qualified and experienced for the job. I use lots of drops through the day but only with momentary relief.
I would love to meet up with you near Frankston in March. I can only make after work hours though so an evening or weekend would enable me to come. Perhaps Sat 4th or Sun 5th March would work? Lotus1, I don't know any cafes within walking distance from where you are staying but there are plenty nearby and I would be happy to pick you up and take you back to your accommodation if it works. I live on the Mornington Peninsula so fairly close to Frankston (about 30 mins drive).
Look forward to chatting with you all here.
Jus
Welcome to the forum Jus!
Glad Dawnmist was able to help you find this thread.
People here are good listeners & we all seem to have an input.
I'm sure the other ladies as well as myself would love you to join us if possible on the weekend (4th or 5th March), which you said is best for you.
I'll fit in with you all.
Jus, thanks for the info re cafes and your offer of a lift also.
It's looking like I'll need to be picked up.
I hear Mornington Pen is beautiful.
This is exciting planning getting together.
I look forward to meeting you along with the other ladies if possible.
Lotus1
Hi all
I'm fine for the Saturday or Sunday. Prefer about lunch time.
Shall we go to Fratelli?
Lotus1 you will need a lift. Will your partner come?
Cheers
Jo
Hello Ladies
Yes, the Sat or Sun for lunch is fine with me.
I'll go with your choice, ladies.
Thanks for your generosity whoever transports me (possibly hubby too) depending on the day.
Hubby is unable to come Sat & won't mind if I just meet with you ladies should Sat be the date.
This is exciting meeting sjogren's friends!
I had tooth root canal treatment on Monday.
I'm not happy because I wanted the patched crowned tooth pulled out (2nd from back of top teeth), wouldn't miss it, wouldn't remove the tooth.
Since I was in such pain, face up into hair, had to go along with the surgery.
The pulp was inflamed & calcium build up.
I took 2 days off work & had to cancel meeting up with someone this morning due to lack of sleep/pain.
Oh well, I'll get over it. I've never had tooth pain before despite having crowns/fillings.
I hardly ever use panadol which affects me, clashes with my sleeping pills making me spaced out the next day.
Sorry to whinge.
I'll dream about our date.
Look forward to hearing when the meeting time is.
Take care all.
Lotus1
Ok lets make a decision...
Saturday 4th March
12 noon
Fratelli (Cranbourne-Frankston Road)
Jus can you pick up Lotus1?
Is this ok for everyone?
Cheers
Jo
Thanks, Sat 4th, 12 noon sounds great if everyone is fine with it.
Thank you Jus if you are able to pick me up at Frankston Guesthouse, 12 Bondi Ave, Frankston.
Looking forward to seeing you all, my special sjogrens friends.
Must warn you I've a very good appetite, despite being built like a bean pole lol
Oh, my new replacement android tablet just arrived by courier & it's white in colour which I was hoping for.
Now to work out how to get it set up. Took me ages last time.
I went to a retirement seminar last year & was given an android tablet which stopped working a few months ago.
Decided to let the organizers know & they replaced the faulty android tablet even though I never signed up to any plans. We don't earn enough $$ lol
My tooth gum wouldn't settle so I took to it with salt water rinses which soothed the gum, nice.
Of course my eyes got so dried out I couldn't drive to the Dr to get a medical certificate for the rest of the week.
Hubby was too fatigued, had to sleep so my lovely 81 yr old neighbour drove me to the Dr.
She is wonder woman even though she has a form of chronic fatigue, no problems driving, chatting all the way. She sat in the car using her ipad while I was in with the Dr.
Don't think I'll be like her when I'm 81 yrs!!
Catch you soon.
Lotus1
12pm on Sat 4th is good for me (and my husband) too.
Lotus1 - if Jus cannot pick you up, we should be able to. So you don't need to worry about not being able to get there. :)
Looking forward to chatting a while with everyone!
Cheers,
Janeene (Dawnmist)
Thank you Dawnmist.
You are all very kind.
I'll be looking out for a sjogrens person lol - Frankston guesthouse, 12 Bondi Ave, Frankston.
If hubby ends up being able to come it would be nice for your hubby Dawnmist.
I'll let you all know my mobile number nearer the time ladies in case needed.
So looking forward to meeting you all for a good old chat.
I see the opthalmologist tomorrow.
Reckon he'll suggest plugs - scarey!
Take care.
Lotus1
Hi everyone,
Sat 4 March is great. I will pick up you and hubby if he comes Lotus1.
Thanks again Dawnmist for keeping me connected. Maybe you can all give me some forum tips when we meet.
Cheerio,
Jus
Thank you Jus, very much appreciate your kindness.
Look forward to meeting each of you lovely & special ladies soon now!
Opthalmologist is arranging blood plasma eye drops for me.
Can only try.....
Take care.
Lotus1
Morning Ladies
I'm looking forward to seeing you all next Saturday 4th.
Hope it's a pleasant sunny day.
Thank you for picking me (& possibly hubby) up Jus.
Enjoy your week.
Lotus!
Excited about meeting you all tomorrow!
Been telling all my family about it ;-)
See you soon
Jus
Yes, I'm excited about seeing you all too!
Only 1.5 hours before my 'taxi' arrives to pick me up!
Thanks heaps, Jus
See you all real soon.....
Lotus1
Hi Ladies
It was lovely meeting you all & chatting while eating lunch together.
You are all brave ladies coping with SS.
I'm enjoying Melbourne behaving itself with nice weather.
Dawnmist, please thank your husband again for the tablet cord, so kind.
Never know what men have stored away!
Thank you so much Jus & Bigleyj for transporting me & your offer Dawnmist.
We took Glen's daughter to Frankston Beach yesterday.
Quite an experience for hubby driving the wheel chair.
I was asked by my step daughter to drive the wheel chair back to her room last night after tea.
I was nervous, but not her, brave girl she is. I finally got her there safely.
We are certainly learners with the 24 hr care.
Hubbby is worn out & sunburnt so having a well deserved sleep in today.
Carers deserve a medal working with 'demanding' patients and appear to be real carers.
Today hubby & I plan to check out Bayside shopping centre
Hear it's huge!
Off to find out what bus will get us there lol
Keep in touch.
Lotus1
Well I definately had a good time. A few laughs too 😀
Hope we can do it again.
Cheers
Jo
Yes, I definitely enjoyed meeting you all.
Hopefully the three of you & maybe newbies can meet together now & then & fill me in on how things go since I'm over in the west.
Lotus1