The been lucky enough to be talking a lot with with Jenny and spending time with Josie.
Jenny at equinox told me she wished for me is 'when HD makes me fall that with the good karma I have that I bounce right back up'. Good one for the season of balance with my unbalanced body.
I am blessed with my girls...
Not allowed to be ditzy anymore Jenny told me. I told her can't help it ( too much stuff in the 60's )whoops always hidden behind . I am smart she told me so I have to believe that.
I did some really dumb things the other day so figured I could blame the HD ..I did.
Every night I think of all the things I am grateful for I never have a self pity party . Jenny told me I need to no matter how I feel to make sure I walk an extra block or walk a little faster so when there is a cure I'll be in good shape for it. The hardest part of the day is morning I have to force myself to get up..very tired but what can I do ? Switch bodies with someone? Any volunteers out there?
The other day Josie ran in a race for HD a fundraiser on a trail in the cold and rain and she placed first! So proud ....I took pics.
2 things I learned the hard way I shouldn't drink tea at my computer -the other is not to be walking with a bowl of cereal ...Josie told me I need to be in a place with laminate floors she is right.
The gift of having HD diagnosis means I know what I'm fighting..
Went to a HD support group starting to get to know the people behind the diagnosis .
Still happy to have run away from asst living and living with the Bonnie I will never ever go back again .. don't have enough energy to cook so open a lot of tins of things and spend a lot of time at a deli buying soup they make great soup ..also a lot of time at Blenz and Starbucks . Been 8 months I've been in this place it was the right choice ...
Had a great time with the kids last week Josie had a bonfire at her lot also went out with them for sushi (I hate sushi)..but it was fun to see them..
very lucky to have them and Jenny and Josie ..and friends and family... blessed
so peace love to all think that;s all for now
love kath
Mum
Wednesday, 25 September 2013
Wednesday, 31 July 2013
post Montreal with walker
well it seems timely to blog about what's been going on lately ....
I flew to Mtl courtesy of a friend and had a great time seeing friends and family but was taken aback at how much pain I'm in these days ...I need to accept this is the new normal .
Robby my sweet little brother picked me up at the airport in Mtl so good to see him after 2 years! He helped me get set up in my hotel room with my computer and all ..
The next day - very hot and humid - my friend Terry Saba picked me up - we've been friends since we were 4 years old so it 's always special to see her. We have a routine when I'm in Mtl - we go visit our mutual friend's mum (Janice Blue who died of CF at the age of 32) . I get flowers and Terry buys pastries then we go visit her in her little house still the same we;ve been going to for 58 years and for 58 years Mrs Blue with her gentle soul and soft voice opens the door for us.
The next day I hopped a train with my walker to see my dad - my cousin Eileen picked me up from the train station and took me out for lunch . Then she took me to my dad's he lives on the 21st floor of a building where we had a tornado watch ..I was freaking out a bit . My cousin Tommy then picked me up and drove me to the train station . Got to see quite the lightening show from the train I forgot how incredible the skies can be there . Was in massive pain from sitting on the train for too long.
On the Sunday Robby picked me up and we headed out to Laval to see Poochie and Doris - Tommy came from Ottawa with smoked meat(to die for ) , St Hubert BBQ, and 2 guitars so he was the man !
Had a great day at the Pownalls , catching up - eating and singing .
Terry Saba took me to old Mtl to one of my favourite restaurants Jardin Nelson - so lovely there what;s not to love? The same day Glenn Bertie and his daughter and girlfriend
The second to last day my cousin Pat had organized a gathering for me with her sister Pam , brother Chris, daughter Elizabeth with her adorable son Oz ..that was amazing catching up with my family.
I was in so much pain I thought I;d leave early ...now Jenny has promised me next summer she's going to be my assistant and drive me every where which would make a huge difference..
Came home to flowers and card and balloons and a very happy cat - seeing my old home and friends and family in Mtl did my soul good and now I am back in what I guess my new home is ..
that's it for now kath
I flew to Mtl courtesy of a friend and had a great time seeing friends and family but was taken aback at how much pain I'm in these days ...I need to accept this is the new normal .
Robby my sweet little brother picked me up at the airport in Mtl so good to see him after 2 years! He helped me get set up in my hotel room with my computer and all ..
The next day - very hot and humid - my friend Terry Saba picked me up - we've been friends since we were 4 years old so it 's always special to see her. We have a routine when I'm in Mtl - we go visit our mutual friend's mum (Janice Blue who died of CF at the age of 32) . I get flowers and Terry buys pastries then we go visit her in her little house still the same we;ve been going to for 58 years and for 58 years Mrs Blue with her gentle soul and soft voice opens the door for us.
The next day I hopped a train with my walker to see my dad - my cousin Eileen picked me up from the train station and took me out for lunch . Then she took me to my dad's he lives on the 21st floor of a building where we had a tornado watch ..I was freaking out a bit . My cousin Tommy then picked me up and drove me to the train station . Got to see quite the lightening show from the train I forgot how incredible the skies can be there . Was in massive pain from sitting on the train for too long.
On the Sunday Robby picked me up and we headed out to Laval to see Poochie and Doris - Tommy came from Ottawa with smoked meat(to die for ) , St Hubert BBQ, and 2 guitars so he was the man !
Had a great day at the Pownalls , catching up - eating and singing .
Terry Saba took me to old Mtl to one of my favourite restaurants Jardin Nelson - so lovely there what;s not to love? The same day Glenn Bertie and his daughter and girlfriend
The second to last day my cousin Pat had organized a gathering for me with her sister Pam , brother Chris, daughter Elizabeth with her adorable son Oz ..that was amazing catching up with my family.
I was in so much pain I thought I;d leave early ...now Jenny has promised me next summer she's going to be my assistant and drive me every where which would make a huge difference..
Came home to flowers and card and balloons and a very happy cat - seeing my old home and friends and family in Mtl did my soul good and now I am back in what I guess my new home is ..
that's it for now kath
Wednesday, 10 April 2013
om.......finally at peace..
Been too busy to blog moved 2 months ago into an apt - so happy I have Bonnie the brat cat with me -
I can eat what I want when I want - I have a bath tub and gas fireplace - washer -dryer- dishwasher- etc etc...
When I go to sleep at night it's peaceful and it stays that way-from my living room I'm looking at trees I have lovely verandah - I sit there with Bonnie.
No more chaos at mealtime - I set the tone for my meals ...
Since I was diagnosed this is the first time I am truly at peace I needed to have control of my surroundings, sounds and food at asstd living I had none of that . No more locked doors and having to sign out..
My Dr is a few blocks away - the vet is a few blocks -there's a Starbucks right around the corner- a book store a lovely new market.
I;ve seen lots of Josie and the kids - made Easter dinner for Josie since I moved in lots of love and magic in my kitchen also came out of the broom closet as Jenny words it.
I;ve been to a HD support group meeting and going to one tomorrow ..it was strange in some ways but great in others.
The day after I was diagnosed I couldn't drive anymore which was a tough one but I saw my car the other day parked down the street here..including the dents I put on it!!Whoops .......
In one way I felt bad I miss driving like crazy on the other hand I thought I'm lucky I'm out of asstd living and I live in a beautiful bldg- I have my cat so I can't complain...
A few times a week I have help doing things here - oh and I have an electric wheelchair still a little afraid of it...
Looking forward to when Jenny moves up here too I miss her so much ....
that;s it for now
kath
I have wo
I can eat what I want when I want - I have a bath tub and gas fireplace - washer -dryer- dishwasher- etc etc...
When I go to sleep at night it's peaceful and it stays that way-from my living room I'm looking at trees I have lovely verandah - I sit there with Bonnie.
No more chaos at mealtime - I set the tone for my meals ...
Since I was diagnosed this is the first time I am truly at peace I needed to have control of my surroundings, sounds and food at asstd living I had none of that . No more locked doors and having to sign out..
My Dr is a few blocks away - the vet is a few blocks -there's a Starbucks right around the corner- a book store a lovely new market.
I;ve seen lots of Josie and the kids - made Easter dinner for Josie since I moved in lots of love and magic in my kitchen also came out of the broom closet as Jenny words it.
I;ve been to a HD support group meeting and going to one tomorrow ..it was strange in some ways but great in others.
The day after I was diagnosed I couldn't drive anymore which was a tough one but I saw my car the other day parked down the street here..including the dents I put on it!!Whoops .......
In one way I felt bad I miss driving like crazy on the other hand I thought I'm lucky I'm out of asstd living and I live in a beautiful bldg- I have my cat so I can't complain...
A few times a week I have help doing things here - oh and I have an electric wheelchair still a little afraid of it...
Looking forward to when Jenny moves up here too I miss her so much ....
that;s it for now
kath
I have wo
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