LATEST UPDATE

Posted on April 8, 2013 by Gale

It’s been awhile so I thought it was time to write an update.

I’m just kind of coasting in a slow but steady downward spiral.  My illness is not progressing dramatically (thank God) but my decline is steady and insidious.   I don’t always realize just how much till I notice at some point that I’m no longer able to do something I could do just last week or last month.  My declining energy levels & breathing force me to reassess on a daily basis which activities are worth the effort to me and which ones are not.  Now, with a few exceptions, I do things mostly on a ‘need to’ basis.  I’ve also learned that I need to take small naps several times throughout the day or I become rather snarly.

A couple days ago my two granddaughters came into the living room to find me napping in the chair.   I heard one say to the other, “don’t worry she does that all the time cause she’s old”!

I’ve also finally learned to prioritize what’s important and what isn’t,  so I guess like the saying goes; “Better late than never” to learn a life lesson.
Going to my exercises 3 times a week is a must.  I have to maintain my muscle strength and endurance in order to come through the surgery safely.  That’s why the transplant team insists on it and not being able to do it anymore could result in being taken off the transplant list.  Even those people who are on life-sustaining machines like ventilators and ECMO are encouraged to exercise as much as possible.

Going to church every Sunday is worth the effort for me because even though I am physically exhausted when I get home, I feel spiritually refreshed and, as a beautiful old hymn that I love says;

 

Occasionally going to the grocery store just to get out for a bit is good even though I don’t enjoy shopping too much anymore.  As long as we just keep it short, it’s all good.

A couple weeks ago I met my sisters Bonnie and Kathy and we went for lunch at my favourite restaurant,  Red Lobster.  We had a very nice time and it was definitely worth the effort. Bonnie gave Kathy and I each a card and wrote memories in it which was quite disgustingly mushy but touched my heart tenderly all the same.   She even brought a rose labelled Sister to commemorate my sister Joan who is deceased but was there in spirit I’m sure. We gave her rose it’s very own place at our table but  I think I heard Joanie the Rose complain because she didn’t like  view she had what with being laid on the table and all but that’s another story.  Here are the pictures:

Bonnie front left, Joanie’s rose on the table back left, Kathy back right and me front right

Joanie's rose

What else is there to tell.  Well, I’ve had a few medication adjustments because my meds were making me feel slightly light-headed and dizzy (no that’s not my normal state).

The med change seems to have helped.

I go to see my respirologists here at home and in Toronto next week so I will update after those two appointments. 

So I guess th-th-that’s  all for now folks.

Have a great week!