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Reply by KathCull_admin
30 Apr 2014, 3:08 AM

Thank you Sue and Glasslady

Sue, I take so much for granted – your description of having to change how you do everyday activities from getting dressed to knitting or crocheting and with what sounds like good humour – a good reminder for me.   (I too have read romance novel!  They have their placeSmile

Glasslady I appreciate your comment about feeling blessed – a good reminder for me too. 

Earlier this week Lindsaymarie posted a new thread Failing Friendships. She wrote, “I thought I had very close friends and expected people to connect, call and see how I've been dealing, how Jon is doing but I find they just aren't.” 

Are there comments you would want to add to the conversation?

Hope you sleep well tonight.



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Reply by KathCull_admin
04 Jun 2014, 2:49 AM

Hi Sue
Can't believe it's been over a month since the last post. The weather is very nice here now - how about your end of the country? (my picture with sweater looks much too warm:)

I wondered if you had seen eKIM's  thread  Quote: The poignancy of hope.  Any thoughts?

Take care


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Reply by Sue B
04 Jun 2014, 3:59 PM
Hi all.
I've been kind of busy. Unfortunately I have had to "fire" my GP. Long story, but the end is that you have to be able to trust your doctor/s and I no longer could. Luckily the hospital here has a satelite clinic that I can attend and they will help me find another family physician. In the mean time I can see nurse practitioners if I need to ... kind of hope I don't need to, if you know what I mean.
Also the husband and I got in to a cycle of arguing. Neither of us can figure out why now. Frustration? Pain? Who knows? And the moral of that story is that everything that happened before you were sick will still happen while we are sick. the every-day doesn't stop because we're ill ... although it would be nice if it did.
I wrote anotehr blog just for silliness.  http://susansbunchostuff.blogspot.ca/2014/05/teddy-bears-fight-for-rights.html
I hope it puts a smile on your faces. We need to smile now more than ever! Do things that make you smile, and laugh and giggle. They're important to your health.
I'll catch up on my reading here within the next few days. At least I plan to.
Blessings to all,
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Reply by KathCull_admin
05 Jun 2014, 11:33 PM
Dear Sue, 
Sadly your story about GP's is not an unusual one - and it is often so hard to find someone new. I am glad there are people out there to help you find the right match. My fingers are crossed that you will find one soon - but also that you won't need to see anyone soon!

Thanks for that great blog of silliness:) I agree that humor is critical for health. A friend of mine did her Phd thesis on humour and it's importance in health and illness.

I read your comment on Quote: The poignancy of hope.  I am thinking about your comments on how much is what we 'choose'. As you say not easy - and I think that often it seems that 'choosing' something that is less hopeful is easier at the time but more likely to wear us down. Does that make sense? 

Keeping on with the theme of hope (if you can still follow my meandering mind) The words that stayed in my mind re your comment on cycle of arguing were, "neither of us can figure out why." Would  you say it is hopeful when both people are aware there is tension/disagreement? To me it seems like both people are on the same wavelength - it might be vibrating a little too much but both know what's going on.  Please put me straight if I am off base here. I guess I am thinking about my own marriage relationship and how we have had as you say cycles of arguing but we work it out....

So good to talk to you Sue. 
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Reply by NatR
06 Jun 2014, 1:20 AM
Hi sue,

i see that you have had to let go of your dr! Well, it's a brave thing you did and as disconcerting as it is to be between drs, sometimes there needs to be a fresh view of things , a new perspective .

i think Katherine made a great point about airing issues and despite differing views - some things do have to be discussed.  I do hope you and your hubby are making up and continuing to support and be there for each other.
I  feel sure that you are;)

be encouraged - while you edit for a new doctor you can get great care and input from so many other health care professionals :)
I think very highly of nurse practitioners. ;)

sending you best wishes for an easier tomorrow!
oh, I looked at your blog and smiled;)  
Good night;)
NatR ..  
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Reply by Sue B
16 Jul 2014, 3:10 PM
Once again it's been quite a while since I last checked in. Sorry about that, but I've had a string of exacerbations to deal with. Luckily I have a wonderful respirologist who is so helpful with that and has stepped in as a temp Dr while I await intake at the primary care clinic (this Friday just so you know). I have noticed that really heavy antibiotics do make one tired...really, really tired. About an hour after taking it there is no denying another nap; it's going to happen regardless of where I am or what I'm doing. On the bright side it's actually working, which the other was not.
Now, hope...
Hope is that feeling that there is something better. It may not be happening now. You may have to wait for it, and being patient when you're in pain or are sick is no walk through the park. But you know that there will be and/or was something better.  And for us that something better is looked for by minutes.
I can illustrate this using one of the AA  moto's: One Day At A Time. That advises to commit to doing what ever it is (in an alcoholics case, remaining sober) for one day...just one. Not ten days. Not even two days. Just one. 
In our case my darling and I have commited to being hopeful, to that something better, for this minute. This minute is what we have for certain. We may not have ten minutes from now. We may not have five. But this minute we have. And we can love each other, remember what we came together for, adore each other, for this minute. For this minute we can push pain, illness, frustration and resntment aside and simply be together.
I hope this makes sense, but it is one of those choices I mentioned. We have CHOSEN to put aside all the harshness and to hope.
That aside we have been just trying to get through this deplorable heat - another time when apply the this minute commitment is really handy. He revfels in the summer heat. I, on the other hand, am super prone to heat prostation/stroke, so I stay well indoors from about 11 AM to 4 PM. With luck I can sleep for at least a couple of hours of that. It has, though, been allowing me to get a good bit done on housework.
There is NEVER a #^@#ing end to housework! 
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Reply by KathCull_admin
20 Jul 2014, 2:05 AM

Hi Sue
So good to hear from you. I am thinking 'this Friday' for new doctor intake was yesterday? Does that mean you go down to a clinic or is done by phone initially? Have you been assigned someone now – or should I say has someone been assigned to you care for youSmile

I have heard from others that certain antibiotics and many medications are incredibly fatiguing - but as you say they are working.

As always your words are so encouraging Sue. I think hope is a very strong word. I wonder too, if it doesn’t give a person at least some control over the wild ride life sometimes gives.

Reading your words about hope reminded me of Nouce who has posted to how to be patient and hopeful , where she talks about “getting worn out with the unknown, and with being unable to make any plans, even regarding traveling for more than a few days. Any wisdom on living in long-term limbo?”  

Take care Sue, until we talk again.


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Reply by Sue B
28 Jul 2014, 3:52 PM
Well, this all got rather complicated as my mobility scooter was stolen from in front of my respirologists office. I did get in for my intake appointment but I have been almost nowhere since then. Taxi's are expensive!
Initially I went in and filled out the intake form and then had to play the hurry-up-&-wait game. It actually wasn't that long, though it felt like it. The doctor I saw was polite and seemed to empathise with my situation with my recent situation. (I do have to say that when I tell other doctors about the situation they tend to not look surprised at all. I wish Dr. W had come with a warning lable.) Now I have blood tests and a few other things to do before a second intake appointment. The problem with that is, of course, that without my scooter I have to try to arrange a ride which is a problem. Mostly, though, I will see nurse practitioners...I think. The Dr indicated that I would get a higher than usual form of care from the primary clinic; seriously I don't know what that means.
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Reply by KathCull_admin
02 Aug 2014, 10:41 PM
Hi Sue
I am trying to think of reasons someone would steal your mobility scooter! I am thinking someone must have seen him/her/them take it. Not only are taxi's expensive as you say, but they have in essence taken your legs from you. Would it be covered by insurance?

I am sure these are questions you and your husband have asked already. And thinking about your earlier posts - your commitment to living one second, minute, hour or day at a time depending on the circumstances - will be what allows you to keep it together. I admire that - too often (as you can see by my above questions:) I get caught up in the action.

Have you noticed a change in the care at the primary clinic? Would that move into a change or increase in the home care you receive?

I just put on some Spanish rice and chicken and found some apples in the fridge that still seem to be okay and made an apple crisp. For a treat - Turtle Ice Cream - was on sale! Funny though I seem to like treats every dayLaughing I hope you have had a treat today Sue. 


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Reply by Sue B
03 Aug 2014, 4:26 PM
Well the answer to why is quite simple; money. There is a brisk buisiness in stolen scooters and wheelchairs and their parts. Medical piracy is big bucks! The method of selling them is also simple. Once the criminal has the unit they take out an ad on Kijiji, Craigslist or the like that says something like "My beloved mother recently passed away. Her scooter is in near-new condition. Asking $800." Alternatively it gets sent overseas although I'm not sure what the deal with that is exactly.
I encourage people who answer social media ads for mobility devices to ask the seller for the items serial number. If they won't give it to you report the ad to the R.C.M.P. If they do give it to you, you should be able to check it with the police.
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