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Reply by Sue B

21 Jan 2015, 4:57 PM

Hi there and Happy New Years, though it's somewhat late.
I got 24/7 oxygen, and that takes some getting used to.We're having trouble managing the tubing. We've both tripped over it more than once. Oh well, it beats the alternative.I really haven't been doing much except for adapting to the oxygen compressor and especially the nasal cannula being in so much.
I spend a huge amoint of time being my own nurse. A lot of that is charting stuff and learning what is and isn't "significant", and a lot of significant stuff is only significant in combination with.....how did you guys make it through nursing college? It be driving me CRAZY!
I've just recently developed bronchitis so we have me on my action plan prophylactically. The prednisone is a blessing after a few days, but it's a matter of getting through those first couple or three days.
We had a little snow, but now we are green as you please. We have been getting lots of rain. A few days ago the lower levels of our community were under flood warning....really kind of boring...wet and boring.
take care and talk to you later
Sue

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Reply by JennJilks

21 Jan 2015, 5:54 PM

It's amazing what we can learn, we civilians, when we need to! All the best.

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Reply by KathCull_admin

25 Jan 2015, 4:56 PM

Hi,

Sue, JennJilks just posted to medication records – a way of keeping track that I thought you might find interesting – especially since your health care needs have placed an increased responsibility on you. Have you found a way to keep your notes electronically?

I know you like to read, and I found a book I just finished very good - not sure what genre you like - mostly I read mystery by non Canadian authors, but this one is a non fiction written by a Canadian! It's called "What the Psychic Told the Pilgrim" by Jane Christmas. I have been interested in the Camino de Santiago de Compostela in Spain and this was a very honest look at that trek.

Take care
Katherine

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Reply by KathCull_admin

25 Mar 2015, 4:48 PM

Hi Sue
As promised here is me with my intermittant 'hello'! The snow was almost gone here in Manitoba, and then we got dumped on again. However it is good to know that it won't stay another 3 months. Not sure which is best rain and wet or snow and cold.....

I hope the oxygen is helping you to feel better - are you finding you are adjusting to the tubing and equipment? It seems to me that onging health concerns = ongoing change and ability to adapt. Have you needed any more hospital stays? Any new knitting projects?

Katherine

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Reply by Sue B

30 Mar 2015, 6:44 PM

Hi guys, I finally got back here. It's been ... interesting. There hae been a couple of battles and one was settled in my favour and one not.

I finally got my air compressor for nebulizers. It took some doing, and people who are dealing with the minisstry that currently oversees disability stuff should know that it can take a while. Even with urgent marked clearly on your file, applications are still 2-3 weeks behind. Non-urgent ones are in to months. I still could use a fingertip oxymeter and I cannot figure out why those are not covered at all here in BC. Baffles me.

I no longer qualify for a scooter. It dawned on someone that since I get absentia seizures I really shouldn't be using a scooter or power chair at all. I must reluctantly agree. This is even more now that I have developed spastic movements in my arms which are unpredictable and can last up to half and hour so far. Seriously I'm starting to think that the universe has something against me. Argh! Just kidding. My OT is trying to get me a rollator/personal transport. I don't know if youve seen these before, but they are a walkker and transport chair in 1. Like this...

You can transform it from a fairly standard walker in to a transport chair as shown. I'd just have to get Steve to figure out how to put on an oxygen tank rack.

But for now I am going to go try for a bath if I have enough "spoons". Later!
Sue

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Reply by KathCull_admin

31 Jul 2015, 6:45 PM

Hi Sue
It has been far too long since I checked in with you. That is quite a nifty contraption - I have never seen one like it before. Did Steve figure it out pretty quickly?

Xenia has been posting re government coverage on But who advocates for me?.

Hope your summer is going smoothly Sue.
Take care
Katherine

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Reply by KathCull_admin

20 Feb 2016, 2:01 AM

Hi Sue
Just checking in to say Hi and to let you know about two threads started by people who have been diagnosed with illness.

The first is linda* who started serious illness and MelissaAnn who started end stage liver disease

I am always glad to hear from you should you want to post.

Take care Sue
Katherine

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