now that made me laugh for some reason (small things amuse small minds ) or maybe it's the HD attitude 'take advantage of this opportunity to laugh it may not pass by too soon again.'
I am looking at everything around my place that has to be sorted and packed - very confusing at the best of times. I have to go through everything and I mean everything, bins of sheets, clothes I made for the kids when they were little, recipes, music, paint, patterns, frames ......get the picture? Not to mention the abundance of clothes. I am mildly ADD but just enough that I'd rather do anything than sort through stuff I have a hard time reaching.
So that;s why I took my walker for a walk, got a salted caramel hot chocolate sat outside Starbucks with my book, patting strangers dogs.
Yes I'm still happy to be alive still happy I can walk still happy about everything except the thought of sorting. I wish I had a twin who do things like that for me . I have crazy waves of fatigue it feels sometimes like my brain is detaching itself from my body. I will not let this disease beat me as far as attitude goes . I've always been an observer and as a child I'd watch women who had nothing to complain a bout but would make great dramas. Then there the mothers (like mine and Mrs Blue) who were lovely feisty gentle souls. No matter what happened to them they were strong and kept going. Also my grans had rough lives but they never complained . I look at my daughters who are going through pretty brutal times right now . They haven't given up they keep going , my granddaughter as well.
I look at my grandson always a smile on his face, he's a gift too.
I am so lucky to have my family all of them even when they tick me off (well I do have walker rage according to Josie) but that's ok..
I'd rather be out having walker rage than curled up defeated on the sofa feeling sorry for myself.
Well the only time I have walker rage is when someone beeps at me to hurry up .
I look around and would still rather be me than someone else- I love my friends and family and feel that support and love lifting me all the time...and I am thankful
that's it for now
kath
Mum
Friday, 3 February 2012
Sunday, 22 January 2012
well I've been thinking...
the one thing that (aside from being able to bring Bonnie my delightful cat ) that was bothering me was that I wouldn't be able to create things from nothing.
When I was in high school remember the excitement of forming a folk group, organizing a coffee house at RHS ,creating a fashion show to raise $ for the choir to go to new York. I just walked into a trendy boutique in Alexis Nihon and asked if I could borrow their clothes for a good cause.
When I explained why they thought I had a lot of guts so asked me to work there part time(I was 16 or 17 at the time) during one of the fashion shows I organized for them National film board asked me if I would do the same for them they wanted to do a documentary on models in the 60's . So I played the role of fashion coordinator and was the FC for that film. It was shown in theatres that summer.
When I moved to Owen Sound I created a choir of neighbourhood kids, then moved to NB where I created a choir of teens....then I moved back to OS and created amongst other things "Bread and Roses' coffee house to raise $ for the women's crisis centre, a few different groups all with Peter Little my musical buddy, including Kathy's kitchen .
Even when I was living in Nanaimo I had nobody to walk with so I created a group we met every day for almost 5 years.
I had been feeling at such a great loss thinking what the heck I'm too young to be doing nothing with my creative brain and I didn't want to lose my spark for life.
Well between what my daughters said and a friend Ruth said a light finally went off in my brain. Guess I had to hear it 3 different ways(my perfect excuse I have HD and it takes time to sink in) so Ruth said to not get rid of my craft supplies etc she said maybe I can teach a class in crafting or guitar or just sing and I will for sure start a Scrabble group there (there is none) well this is all assuming I'll be allowed to do this so hope it all works out for me then that creative part of my brain and that side of my spirit that needs to create all will be sparking along quite nicely.
Thanks again everyone for the support and friendship and love, as well as that group of women I connect with every day and they have listened to me moan about this disease at the start they've been wonderful too as well as my real life family and friends.
peace , love
When I was in high school remember the excitement of forming a folk group, organizing a coffee house at RHS ,creating a fashion show to raise $ for the choir to go to new York. I just walked into a trendy boutique in Alexis Nihon and asked if I could borrow their clothes for a good cause.
When I explained why they thought I had a lot of guts so asked me to work there part time(I was 16 or 17 at the time) during one of the fashion shows I organized for them National film board asked me if I would do the same for them they wanted to do a documentary on models in the 60's . So I played the role of fashion coordinator and was the FC for that film. It was shown in theatres that summer.
When I moved to Owen Sound I created a choir of neighbourhood kids, then moved to NB where I created a choir of teens....then I moved back to OS and created amongst other things "Bread and Roses' coffee house to raise $ for the women's crisis centre, a few different groups all with Peter Little my musical buddy, including Kathy's kitchen .
Even when I was living in Nanaimo I had nobody to walk with so I created a group we met every day for almost 5 years.
I had been feeling at such a great loss thinking what the heck I'm too young to be doing nothing with my creative brain and I didn't want to lose my spark for life.
Well between what my daughters said and a friend Ruth said a light finally went off in my brain. Guess I had to hear it 3 different ways(my perfect excuse I have HD and it takes time to sink in) so Ruth said to not get rid of my craft supplies etc she said maybe I can teach a class in crafting or guitar or just sing and I will for sure start a Scrabble group there (there is none) well this is all assuming I'll be allowed to do this so hope it all works out for me then that creative part of my brain and that side of my spirit that needs to create all will be sparking along quite nicely.
Thanks again everyone for the support and friendship and love, as well as that group of women I connect with every day and they have listened to me moan about this disease at the start they've been wonderful too as well as my real life family and friends.
peace , love
Saturday, 21 January 2012
things move quickly
in my little world --3 months ago I found out I have HD. Things just keep moving too quickly, one day I'm driving the next I'm looking at assisted living places or so it seems.
I'm supposed to be getting prepared to move into assisted living but I've changed my mind. I don't want to live where you can't have animals or have a bath. I don't want HD>>
Had a meltdown on my bd --cried and cried for ages I guess I'm allowed hadn;t done it yet since I was diagnosed. Both my daughters do their best to be supportive in different ways. And Keith thanks for bearing the brunt of my fed-up ness.
Is that not too much to ask of the universe when I am only 61?
Had to get groceries yesterday in the snow trust me walkers and snow don't get along hard to push when they're empty never mind full. I used to complain about walking and driving in slush it;'s even harder to push a walker.
Sometimes I'm ok about this and can accept it whatever 'it' is . I wish though my DRs had some sort of answer or treatment or could say 'this is how it will go' it;s all the question marks that I wish had answers.
All I know is that I will at some point deteriorate but I don't know if it's going to be next week or 10 years from now. I wanted to be an 85 year old woman, still singing and baking and driving and have a dog and now my world is shrinking.
Still putting on the eyeliner and lipstick and still laugh at myself when I'm not crying -oh and someone in the slush and snow yesterday I was trying to walk to a taxi and a fellow in a white van yelled at the taxi driver for stopping where he did for me. I was so fed up and mad at people who don't have patience or honk at me so I banged on the side of his van and yelled 'kiss my ass,;'
Maybe I need to get that as a tattoo with 'kiss my ass; and just show that instead, on my wrist maybe.
I'm not sure how it would go over in the nursing home:)
At least I still have a sense of humour such as it is
Jenny told me I needed to blog but this blog sounds confused which is what I am I guess
kath
I'm supposed to be getting prepared to move into assisted living but I've changed my mind. I don't want to live where you can't have animals or have a bath. I don't want HD>>
Had a meltdown on my bd --cried and cried for ages I guess I'm allowed hadn;t done it yet since I was diagnosed. Both my daughters do their best to be supportive in different ways. And Keith thanks for bearing the brunt of my fed-up ness.
Is that not too much to ask of the universe when I am only 61?
Had to get groceries yesterday in the snow trust me walkers and snow don't get along hard to push when they're empty never mind full. I used to complain about walking and driving in slush it;'s even harder to push a walker.
Sometimes I'm ok about this and can accept it whatever 'it' is . I wish though my DRs had some sort of answer or treatment or could say 'this is how it will go' it;s all the question marks that I wish had answers.
All I know is that I will at some point deteriorate but I don't know if it's going to be next week or 10 years from now. I wanted to be an 85 year old woman, still singing and baking and driving and have a dog and now my world is shrinking.
Still putting on the eyeliner and lipstick and still laugh at myself when I'm not crying -oh and someone in the slush and snow yesterday I was trying to walk to a taxi and a fellow in a white van yelled at the taxi driver for stopping where he did for me. I was so fed up and mad at people who don't have patience or honk at me so I banged on the side of his van and yelled 'kiss my ass,;'
Maybe I need to get that as a tattoo with 'kiss my ass; and just show that instead, on my wrist maybe.
I'm not sure how it would go over in the nursing home:)
At least I still have a sense of humour such as it is
Jenny told me I needed to blog but this blog sounds confused which is what I am I guess
kath
Thursday, 15 December 2011
Is it just me or is it all of us with HD?
Time seems to go differently. It's as if when I do something that takes 3 hours it feels more like 6 ...very s-l-o-w------------------so I will now say I live on HD time :)
I had to do a few different things today, dentist etc but pushing a walker does slow me down or is the HD o r is it the lack of sleep from my body constantly moving.
Or maybe it's a combination of it all.
Also today when I was crossing at a red light I was so slow the light changed before I got to the other side so a man in a van honked his horn at me. I really was shocked here I am doing the best I can a big smile on my face so when I turned to see him telling me hurry up I said with a smile 'kiss my ass'.
I will not put an Irish curse on him I will not put on Irish curse on him---Jenny warned me but I was mad.
Also I'm wondering what the luck of the Irish is- it seems to me not so good...
Really glad Carmen taught me how to knit it is keeping me sane.
I got a Christmas card from my friend Jan in OS today - she suggested not buying any glass - my brother also suggested getting elbow pads and have paper dishes. Thanks I will take that under consideration.
Today when I was getting groceries though I was reaching on to the shelf on the freezer, sent a few things flying so I reached for them and smucked my face so hard on the glass door my glasses pushed into my eye ball so I couldn't see out them on the one side..
Good thing I can laugh at myself ..
Looking forward to having Jenny here next week
She'll protect me from the man in the van and the glass door in Thrifty;'s
that's all for now
Kath
I had to do a few different things today, dentist etc but pushing a walker does slow me down or is the HD o r is it the lack of sleep from my body constantly moving.
Or maybe it's a combination of it all.
Also today when I was crossing at a red light I was so slow the light changed before I got to the other side so a man in a van honked his horn at me. I really was shocked here I am doing the best I can a big smile on my face so when I turned to see him telling me hurry up I said with a smile 'kiss my ass'.
I will not put an Irish curse on him I will not put on Irish curse on him---Jenny warned me but I was mad.
Also I'm wondering what the luck of the Irish is- it seems to me not so good...
Really glad Carmen taught me how to knit it is keeping me sane.
I got a Christmas card from my friend Jan in OS today - she suggested not buying any glass - my brother also suggested getting elbow pads and have paper dishes. Thanks I will take that under consideration.
Today when I was getting groceries though I was reaching on to the shelf on the freezer, sent a few things flying so I reached for them and smucked my face so hard on the glass door my glasses pushed into my eye ball so I couldn't see out them on the one side..
Good thing I can laugh at myself ..
Looking forward to having Jenny here next week
She'll protect me from the man in the van and the glass door in Thrifty;'s
that's all for now
Kath
Tuesday, 6 December 2011
candy canes, crappy days and magic
Ok I was feeling sorry for myself today - had muscle and joint pain and the normal HD stuff like not being allowed to drive .....
My cousin called I said ok I'm having a rough day she said well everyone has days like that (really?!)
I said but I have 3 things today going on with my health and I have to go do some errands in 2 degree weather and not being able to drive........
So I dropped off cat food Bonnie the brat cat can't eat to Bosleys for them to give to the needy animals.
Then I picked up a parcel ---thank you Maureen----
Then I went to the grocery store to pick up a few things and while I was in there somehow with this HD things go flying out of my hands like the little basket-not even sure how I do things like that.
I walked down the aisles somehow with the walker the little yellow basket from Thriftys on the seat of the walker.
After I emptied the groceries onto the counter I went to put the basket down but it went flying out of my hand and landed on the man in line behind me. I said 'sorry' but I don't think he heard.
Oh well maybe there should be special HD shopping hours where it's acceptable to knock things over and drop things.
Last week I saw the as the woman at the assisted living place put it 'I'd be lucky(!) to get assisted living room. It was like a cell - but maybe worse than a cell just a narrow cot, counter, microwave, bathroom that's it no room for anything else.
Anyhow today as I was walking back from the store feeling very sorry for myself a bus slowed down beside me . I was cold, wet , achy, tired I was thinking strange the bus is slowing down there;s no stop for half a block. I turned to look at it and there were lights flashing all over it - instead of 601 it said 'merry Christmas' the bus driver was dressed like a reindeer and as the door opened Mr and Mrs Santa reached out to me and passed me a candy and said 'Merry Christmas'..
I just about cried - I was touched(well even more touched than I was before ) ok now I do believe in Santa and hope and magic.
As always my journey is made so much easier surrounded with love and support of my friends and family
Kath
My cousin called I said ok I'm having a rough day she said well everyone has days like that (really?!)
I said but I have 3 things today going on with my health and I have to go do some errands in 2 degree weather and not being able to drive........
So I dropped off cat food Bonnie the brat cat can't eat to Bosleys for them to give to the needy animals.
Then I picked up a parcel ---thank you Maureen----
Then I went to the grocery store to pick up a few things and while I was in there somehow with this HD things go flying out of my hands like the little basket-not even sure how I do things like that.
I walked down the aisles somehow with the walker the little yellow basket from Thriftys on the seat of the walker.
After I emptied the groceries onto the counter I went to put the basket down but it went flying out of my hand and landed on the man in line behind me. I said 'sorry' but I don't think he heard.
Oh well maybe there should be special HD shopping hours where it's acceptable to knock things over and drop things.
Last week I saw the as the woman at the assisted living place put it 'I'd be lucky(!) to get assisted living room. It was like a cell - but maybe worse than a cell just a narrow cot, counter, microwave, bathroom that's it no room for anything else.
Anyhow today as I was walking back from the store feeling very sorry for myself a bus slowed down beside me . I was cold, wet , achy, tired I was thinking strange the bus is slowing down there;s no stop for half a block. I turned to look at it and there were lights flashing all over it - instead of 601 it said 'merry Christmas' the bus driver was dressed like a reindeer and as the door opened Mr and Mrs Santa reached out to me and passed me a candy and said 'Merry Christmas'..
I just about cried - I was touched(well even more touched than I was before ) ok now I do believe in Santa and hope and magic.
As always my journey is made so much easier surrounded with love and support of my friends and family
Kath
Saturday, 26 November 2011
lists lists and multi-tasking
Was talking to my friend Noreen the other night and I was telling her I was trying to figure out which list to cross off first, the Christmas list or my bucket list...
Also it's impossible to hold an umbrella while you're pushing a walker and flirt....actually there is no way to hold an umbrella so I realized why all the old people pushing walkers in the rain don't look too happy cause their groceries and they are wet.
Every day it seems there are new challenges- today was lets see how many groceries then glasses I can drop.
I guess this is normal for me now. When I'm at the store I drop my purse a few times, send things flying around me .
Today after I walked my groceries home I was putting yogurt in the fridge and somehow dropped it on bottom door tray breaking it and sending everything flying that had been in there. Then was putting my dishes away when a few dropped out of the cupboard and somehow smashed everywhere on the counters right into Bonnie's food and water on all the clean dishes in the dishwasher, on pretty much everything.
After I got that cleaned up I was just looking at the floor and started to turn and somehow landed on my back in front of the door with my arm behind my back. I knew Josie was coming back in 2 hours but it really scared me til I was able to get up .
Shaken me up is what it did I guess.
So after all breaking and dropping of things and falling I guess I am ready to go into assisted living but I really want the one that has the ice cream bar.. the one I hope to get into I go see on Monday.
Then I get assessed by a physio this week as well.
Every day I get I have to learn how to roll with the punches and adapt to new challenges.
I guess what I used to be able to do, drive, drink a coffee, talk , sing I have to do this with a walker....
Multi tasking for the HD challenged:)
I'm sorry I still make myself laugh
Still haven't had a meltdown yet(just wait it should be a mighty grand one)
I'm 3 weeks behind on my Christmas list and I think I'll skip the bucket list for another day.
I need to get cracking on all the knitting I'm supposed to be doing but this darned walking to the store for groceries takes up time.
that;s it for now
Kath
Also it's impossible to hold an umbrella while you're pushing a walker and flirt....actually there is no way to hold an umbrella so I realized why all the old people pushing walkers in the rain don't look too happy cause their groceries and they are wet.
Every day it seems there are new challenges- today was lets see how many groceries then glasses I can drop.
I guess this is normal for me now. When I'm at the store I drop my purse a few times, send things flying around me .
Today after I walked my groceries home I was putting yogurt in the fridge and somehow dropped it on bottom door tray breaking it and sending everything flying that had been in there. Then was putting my dishes away when a few dropped out of the cupboard and somehow smashed everywhere on the counters right into Bonnie's food and water on all the clean dishes in the dishwasher, on pretty much everything.
After I got that cleaned up I was just looking at the floor and started to turn and somehow landed on my back in front of the door with my arm behind my back. I knew Josie was coming back in 2 hours but it really scared me til I was able to get up .
Shaken me up is what it did I guess.
So after all breaking and dropping of things and falling I guess I am ready to go into assisted living but I really want the one that has the ice cream bar.. the one I hope to get into I go see on Monday.
Then I get assessed by a physio this week as well.
Every day I get I have to learn how to roll with the punches and adapt to new challenges.
I guess what I used to be able to do, drive, drink a coffee, talk , sing I have to do this with a walker....
Multi tasking for the HD challenged:)
I'm sorry I still make myself laugh
Still haven't had a meltdown yet(just wait it should be a mighty grand one)
I'm 3 weeks behind on my Christmas list and I think I'll skip the bucket list for another day.
I need to get cracking on all the knitting I'm supposed to be doing but this darned walking to the store for groceries takes up time.
that;s it for now
Kath
Monday, 14 November 2011
walkers , wind and getting lost
IWell I'm still using the borrowed one and getting used to navigating curbs and doors that don't have an automatic opener and finding there are certain things someone with HD can't do like open a door with walker and holding a coffee:)
I was feeling a little sorry for myself last week and really wanted to go to a craft fair downtown Vancouver.
I really don't know Vancouver at all. I mean if it was downtown Mtl or Victoria no problem but I don't think I've ever been 'downtown' never mind on a bus with a walker.
So I get ready, credit card, eye liner, book(hurry up Judi I'm waiting for the next one), yarn, lipstick, loonies and toonies for the bus, fabric bags to fill with goodies I planned on buying.
Check.....
I go down the street to the bus got in front of the bus he yelled 'back up ' I thought he didn't want the walker on it so I turned around and the woman behind me said he needs room for the ramp.
Well I didn't know I've only been using this walker for a few weeks and in my previous life I had a car dammit.
I got on the bus sat up from with the other old folks and students who are too lazy too walk to the back of the bus. Got off the bus a little frightening when the ramp moves but shoot I 've had enough taken I really want some independence so I kept at it.
One thing I forgot was that in any part of Vancouver just don't ask where something is because you'll either hear 'no English' or they say '10 blocks that way' and the next person says '10 blocks this way.'
The other thing I forgot was my map of downtown Van.
I got off the sky train feeling like an adventuress - downtown all by myself.
It only took 20 minutes to find the Convention centre - but actually entering when you're in a walker is another story. Walkers don't work on escalators so a nice fellow who worked there said 'take elevator 2 to the 3rd floor, get off go down the corridor to another elevator then get off on the expo floor.'
Now because I have HD my little brain freezes when I hear too many words like that that don't even make sense.
I saw some other people heading towards the elevator so I asked if they were going to the Craft fair , they said yes so I followed them.
Had a great time met up with Carmen and John and picked up a few things - over 250 crafters from all across Canada even met up with some people from Mtl.
Poor John rolled some yarn for me that my cat tried to eat.
One big bonus with having a walker is getting the big clean bathroom stall -yippee -who knew?
Coming home I got so lost I walked around absolutely exhausted trying to find the sky train station. I ended up walking for about 40 minutes -only one person would help me she was in a wheelchair and said 'follow me' which was tricky she was going quickly in that things and I was so tired had to run with the walker to keep up to her . At one point I thought maybe she's taking me to her gang and they'll murder me but I was so tired I didn't care - by then it was dark and none of the streets were family.
Finally we found the sky train station - I got on it was rush hour and yes most of the seats were taken by men and listen when you're tired with HD and clinging to the walker and the rail it's hard. I glared at a man and said ' I need to sit.'
Got on the bus to come home and the bus driver pushed the button to let the ramp down - it didn't work so he carried my walker down and very gently helped down the steps of the bus.
Beween that day and the next day - I thought I'd walk m y walker to get some groceries but forgot to check that we were having a wind warning 100 km here in Tssawwassen !!
I was wondering why I was having to push the walker down with all my weight...
Days like that you wonder why you put eyeliner on the wind just blows it off.
I mean it makes your eyes water with 100 km winds ....
When I get my new walker I have to figure out a way to have a coffee cup holder my shaky H hand has been spilling way too many ..
I think that's it for now
Kath
I was feeling a little sorry for myself last week and really wanted to go to a craft fair downtown Vancouver.
I really don't know Vancouver at all. I mean if it was downtown Mtl or Victoria no problem but I don't think I've ever been 'downtown' never mind on a bus with a walker.
So I get ready, credit card, eye liner, book(hurry up Judi I'm waiting for the next one), yarn, lipstick, loonies and toonies for the bus, fabric bags to fill with goodies I planned on buying.
Check.....
I go down the street to the bus got in front of the bus he yelled 'back up ' I thought he didn't want the walker on it so I turned around and the woman behind me said he needs room for the ramp.
Well I didn't know I've only been using this walker for a few weeks and in my previous life I had a car dammit.
I got on the bus sat up from with the other old folks and students who are too lazy too walk to the back of the bus. Got off the bus a little frightening when the ramp moves but shoot I 've had enough taken I really want some independence so I kept at it.
One thing I forgot was that in any part of Vancouver just don't ask where something is because you'll either hear 'no English' or they say '10 blocks that way' and the next person says '10 blocks this way.'
The other thing I forgot was my map of downtown Van.
I got off the sky train feeling like an adventuress - downtown all by myself.
It only took 20 minutes to find the Convention centre - but actually entering when you're in a walker is another story. Walkers don't work on escalators so a nice fellow who worked there said 'take elevator 2 to the 3rd floor, get off go down the corridor to another elevator then get off on the expo floor.'
Now because I have HD my little brain freezes when I hear too many words like that that don't even make sense.
I saw some other people heading towards the elevator so I asked if they were going to the Craft fair , they said yes so I followed them.
Had a great time met up with Carmen and John and picked up a few things - over 250 crafters from all across Canada even met up with some people from Mtl.
Poor John rolled some yarn for me that my cat tried to eat.
One big bonus with having a walker is getting the big clean bathroom stall -yippee -who knew?
Coming home I got so lost I walked around absolutely exhausted trying to find the sky train station. I ended up walking for about 40 minutes -only one person would help me she was in a wheelchair and said 'follow me' which was tricky she was going quickly in that things and I was so tired had to run with the walker to keep up to her . At one point I thought maybe she's taking me to her gang and they'll murder me but I was so tired I didn't care - by then it was dark and none of the streets were family.
Finally we found the sky train station - I got on it was rush hour and yes most of the seats were taken by men and listen when you're tired with HD and clinging to the walker and the rail it's hard. I glared at a man and said ' I need to sit.'
Got on the bus to come home and the bus driver pushed the button to let the ramp down - it didn't work so he carried my walker down and very gently helped down the steps of the bus.
Beween that day and the next day - I thought I'd walk m y walker to get some groceries but forgot to check that we were having a wind warning 100 km here in Tssawwassen !!
I was wondering why I was having to push the walker down with all my weight...
Days like that you wonder why you put eyeliner on the wind just blows it off.
I mean it makes your eyes water with 100 km winds ....
When I get my new walker I have to figure out a way to have a coffee cup holder my shaky H hand has been spilling way too many ..
I think that's it for now
Kath
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