Author Topic: Anyone from Victoria, Australia  (Read 1057 times)

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #15 on: November 11, 2016, 03:18:26 PM »
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)


Dawnmist

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Re: Anyone from Victoria, Australia
« Reply #16 on: November 12, 2016, 02:11:49 PM »
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.
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Lyrica, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #17 on: November 12, 2016, 03:05:35 PM »
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




Dawnmist

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Re: Anyone from Victoria, Australia
« Reply #18 on: November 13, 2016, 03:08:10 PM »
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.
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Lyrica, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #19 on: November 15, 2016, 01:56:29 PM »
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.

Bigleyj

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Re: Anyone from Victoria, Australia
« Reply #20 on: December 10, 2016, 12:38:38 AM »
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.

Female, 44 Yrs, Victoria, Australia. 
Diagnosed SJS Nov 2014, diagnosed skin-only Lupus Dec 2014, overactive thyroid medicated since 2011.
 plaquenil, carbimazole, escitalopram (esipram), second generation oral saliwell stent, vitamin D.
Came off low dose Valium mid-2015 😀

Dawnmist

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Re: Anyone from Victoria, Australia
« Reply #21 on: December 12, 2016, 03:45:16 AM »
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.
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Lyrica, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #22 on: December 13, 2016, 04:12:44 AM »
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



Bigleyj

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Re: Anyone from Victoria, Australia
« Reply #23 on: December 18, 2016, 04:10:28 AM »
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

Female, 44 Yrs, Victoria, Australia. 
Diagnosed SJS Nov 2014, diagnosed skin-only Lupus Dec 2014, overactive thyroid medicated since 2011.
 plaquenil, carbimazole, escitalopram (esipram), second generation oral saliwell stent, vitamin D.
Came off low dose Valium mid-2015 😀

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #24 on: December 19, 2016, 04:19:50 AM »
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

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #25 on: January 03, 2017, 02:41:19 PM »
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

Bigleyj

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Re: Anyone from Victoria, Australia
« Reply #26 on: January 21, 2017, 02:37:56 PM »
Hi Lotus1

Looking forward to hearing from you.

Cheers
Jo 😀
Female, 44 Yrs, Victoria, Australia. 
Diagnosed SJS Nov 2014, diagnosed skin-only Lupus Dec 2014, overactive thyroid medicated since 2011.
 plaquenil, carbimazole, escitalopram (esipram), second generation oral saliwell stent, vitamin D.
Came off low dose Valium mid-2015 😀

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #27 on: January 21, 2017, 03:06:27 PM »
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






Dawnmist

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Re: Anyone from Victoria, Australia
« Reply #28 on: January 21, 2017, 04:19:22 PM »
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.
Diagnosed Sjogrens + Fibro March 2015, SFN Confirmed March 2016, ANA 1:640 Sep 2016, SSA+/SSB+, wheat intolerant (not gluten intolerant - rye/barley are ok), Vit D, Omega3 (fish), Lyrica, Tramadol, Celebrex, Lidocaine patches, Plaquenil, Duloxetine, Primolut

Lotus1

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Re: Anyone from Victoria, Australia
« Reply #29 on: January 21, 2017, 05:05:26 PM »
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