So,
I have this idea, and I am going to tell you all about it.
The end program will be called working with ms dot org right?
But getting there is the problem.....
see, there is this building in town, and it is for sale
the building is old and ugly, but in a great location, AND fully accessible, for absolutely anyone. it will be gorgeous after I renovate it, but there is lots of shit to be done before we get there.
That is the end of the good news, btw.
The building has just been reduced to $475,000. That's a bunch of money, for anybody, but a super big number for me, ok? But it is the perfect building for my idea. Check it out, a fully accessible working glass shop, and pottery shop, (and someday blown glass too) with a helper on staff, to work with people who have autoimmune disorders, like MS, and also for veterans. Hey, I know, but it's my idea, and if you are gonna dream, you might as well dream big.
There would be a gallery there as well as housing for clients who came to be rehabilitated. There would be a room where I could stay, a functional kitchen, a room for therapy (massage and acupuncture) space for yoga
accessible bathrooms, (of course, who has to pee more than an MS sufferer?) a wet room, kilns, a small computer area, ooh, an accessible garden, solar panels on the roof, and maybe in the parking lot, too.
Sound good? Yeah, sounds good to me too...the problem is getting there.
There are grants to make this all happen, it's all there, believe me, but this is going to take a bunch of energy to make happen, and I believe that I am slightly scared of realizing this dream. I know that I can do it, I know the right people, I know the guy who owns the building, hell, it could be some other building downtown, there are plenty of them empty. I have contacts who have the cash flow, and I believe that these individuals will back me up, the question is, do I want to do it?
Now, don't get me wrong, I am not afraid of working hard. I worked as a waitress and a bar bitch for 2 + decades, most of the time 7 days a week. Double shifts, too.
the thing is, I have settled into my handicapped world, and my space is fully accessible, at least for me, and my particular handicaps, and do I really want to do this? I know that there are people who need help, and I have the resources to help them, but, do I want to spend my spoons? I am sure most of the MS folks out there know about the spoon theory ( written by Christine Miserandino) but anyone who doesn't, go find it, read it, and you will understand about the spoons.
Anyhow, do I want to spend my spoons on other people? Well, sadly for my fun filled studio days, the answer is yes.
Yes I want to help other people with AI disorders.
Yes, I want to help veterans.
Yes, I think that art is a beautiful therapy for people who are not able to function as they had previously, in their new bodies, so to speak.
Yes I also think there's a of resources for people that they don't even realize are out there and the I want to help these people no matter who they are I don't even like saying autoimmune disorders and veterans because it won't be limited to just that, anyone who has any handicaps or disorder I want to help, anyone who wants help to work in the studio or to try to find work doing something that is similar to what I can show you how to do in a studio, I will help
yes,
And people who don't know about the resources that are available I want to help them too, that's what the little computer room is for, a lot of people don't get Interne or
they don't understand how to use it efficiently, I want to help all those people.
so, what do you think? I really want responses here, I want to hear from anyone who has an opinion or anyone who has no idea I want to hear it I want to make this happen for me but I want to make it happen for us and for my town small town it's a fantastic town with a huge art community but ever since the economy took a dive its been slow here, it's starting to pick back up but it's pretty slow. This is a healing town and I want to help people heal at least psychologically, so that their bodies can adjust to their new normal ( stole that one from the wheelchair kamikaze thanks Marc)
Wednesday, February 19, 2014
Wednesday, October 2, 2013
can you imagine?
The impetus for my re-upping my tired old blog and my tired old laptop is my very best goddess girlfriend wondrous telepathic friend does not say enough, I would go to any zealots imagined pit of hell to fight at her side, and woe to the man who wrongs my girl. Just as an explanation BFF does not even begin to cover it.
We are going to have aa little girlfriend game, an d she is going to text something about her past, anoymously of course no exes will be incriminated here, and I am going to blog about it, daily if possible...in a most
interesting and unique way: I am going to blog about it. Here's how this it gonna worrk, ok?
My girl is gonna send me a text, or an email, with a small paragraph or line: this is what happened the night that i first met F.H. (I'll tell you about the initials later)and then I will recreate the story, using a few pertinent facts, and after I am sure what will be many long and laugh filled conversations, I will publish a blog about it you are going to see a wholes bunch of blog action going on, because I finally figured out where my drafts are, and I am cleaning them up and publishing ALL of them at the same time.
Be afraid, be very afraid
Oh yeah? Well, f@#$ you, MS
Well, I get an absolutely fantastic day once in a while, and yesterday was one of them. I am def achy and totally wiped out today, but I'll take it easier on myself, I promise.
woke up early (always a good start)
checked on my email, etc
took my pills and vitamins( sigh, but they help with certain issues)
went to the office to enter weekend sales ( a bit light, but the season is only just beginniing)
sorted mail pile (how does it get so enormous?)
put all items requiring calls to one side ( still an hour and a half til 9 am)
back upstairs (zoom zoom says the little powerchair that could)
check email, check fb page, misc computer tasks,
back down to the office to deal with phone calls
unload and reload kiln
take pics of current stained glass project to email to client
back upstairs (zoom zoom)
download images, edit images, resize images, email images to client
make lunch eat lunch, take nap 12-1
get up and fold 3 baskets of laundry, then crawl around the bedroom to put it all away
hey, while I'm on the floor, do some yoga. then I go back to my studio to spend a few hours working until it gets to be 6 or 7, then off to the kitchen and we normally cook together with me doing the grunt works as well as I can, and Mark doing the actual cooking, because the stove is definitely definitely NOT HC accessible, and I was never fond of burns. We may listen to a cool comedian, or
watch some tube. we might discuss business plans, do computer work, or go our separate ways while we work on different projects until it is absolutely time for bed, then I might fall asleep watching television. S o, fuck you MS, I did more today than a lot of people who are considered "normal"do in 2 days.
.
woke up early (always a good start)
checked on my email, etc
took my pills and vitamins( sigh, but they help with certain issues)
went to the office to enter weekend sales ( a bit light, but the season is only just beginniing)
sorted mail pile (how does it get so enormous?)
put all items requiring calls to one side ( still an hour and a half til 9 am)
back upstairs (zoom zoom says the little powerchair that could)
check email, check fb page, misc computer tasks,
back down to the office to deal with phone calls
unload and reload kiln
take pics of current stained glass project to email to client
back upstairs (zoom zoom)
download images, edit images, resize images, email images to client
make lunch eat lunch, take nap 12-1
get up and fold 3 baskets of laundry, then crawl around the bedroom to put it all away
hey, while I'm on the floor, do some yoga. then I go back to my studio to spend a few hours working until it gets to be 6 or 7, then off to the kitchen and we normally cook together with me doing the grunt works as well as I can, and Mark doing the actual cooking, because the stove is definitely definitely NOT HC accessible, and I was never fond of burns. We may listen to a cool comedian, or
watch some tube. we might discuss business plans, do computer work, or go our separate ways while we work on different projects until it is absolutely time for bed, then I might fall asleep watching television. S o, fuck you MS, I did more today than a lot of people who are considered "normal"do in 2 days.
.
this mornings test of this fucking laptop
Mark:this is a test of the veronica broadcast system...i cannot find a fault in the keyboard...
Veronica: when veronica types she has to look at her fingers like a moron, but if she doesn't watch the screen the cursor jumps to different places...
Ok, for anyone who is interessted in the saga of veronica and her old fucking laptop:
here's the story
My laptop is like a bajillion years old, it was top of the line when mark got it. (everything is top of the line when Mark gets it) Then 8 or 9 years later he needed a new laptop. So I inherited his old one. Works for me, all it needs to do is stream video and type coherently.
I am left handed, and I have MS. (mostly sucky) and when I type, I look at my hands, I never learned to touch type. The problem begins when I am typing one of my longer missives, if I don't watch the screen, my cursor will jump to a new location, and begin typing from the middle of another word. If I don't look up when I am in the middle f a rant, I could have this mixed jumble of letters like the one I posted a few daw ago, that appeared to be written by a gang of illiterate meth addicted primates, seriously.
So, we sat down this a.m. to look over the computer so that Mark could see what the problem was.
The first line of the blog is where Mark was typing stuff.
The second line is where I was typing, but it did not do what it usually does.
This is not surprising. Items that are not supposed to be sentient are in Mark's presence. I can try to starts a car with my key, to no avail. When a friend comes by to help me they also cannot start the car, so they deliver me to my doorstep, usually with errands, laundry, grocery in the back, unloaded from my defunct vehicle, and into theirs. When Mark arrives with a smug look on his face, the car starts.
Instantly.
Like there was no problem.
As if I hadn't tried to start it at least 5 times.
And so had said rescuer.
But when Mark comes along, the car starts instantly, as does anything that is not working in his absence.
But, I digress.
I have recently gotten a samsung tablet. So has Mark (surprise surprise, take ME shopping for new technology, but everybody gets the new technology) But, no, really, I would not know all the things it could do if he had not gotten a like machine, I most;y use it as a kindle, I play scrabble games on it, I go check out facebook, listen to NPR, I do email om it, I blog, and oh cool, we can use it to stream movies wirelessly onto our flat screen.
I know it oes a thousand more things, but that' s enough for me.
I'm going to swtch to it now, as a matter of fact.
Bye.
Veronica: when veronica types she has to look at her fingers like a moron, but if she doesn't watch the screen the cursor jumps to different places...
Ok, for anyone who is interessted in the saga of veronica and her old fucking laptop:
here's the story
My laptop is like a bajillion years old, it was top of the line when mark got it. (everything is top of the line when Mark gets it) Then 8 or 9 years later he needed a new laptop. So I inherited his old one. Works for me, all it needs to do is stream video and type coherently.
I am left handed, and I have MS. (mostly sucky) and when I type, I look at my hands, I never learned to touch type. The problem begins when I am typing one of my longer missives, if I don't watch the screen, my cursor will jump to a new location, and begin typing from the middle of another word. If I don't look up when I am in the middle f a rant, I could have this mixed jumble of letters like the one I posted a few daw ago, that appeared to be written by a gang of illiterate meth addicted primates, seriously.
So, we sat down this a.m. to look over the computer so that Mark could see what the problem was.
The first line of the blog is where Mark was typing stuff.
The second line is where I was typing, but it did not do what it usually does.
This is not surprising. Items that are not supposed to be sentient are in Mark's presence. I can try to starts a car with my key, to no avail. When a friend comes by to help me they also cannot start the car, so they deliver me to my doorstep, usually with errands, laundry, grocery in the back, unloaded from my defunct vehicle, and into theirs. When Mark arrives with a smug look on his face, the car starts.
Instantly.
Like there was no problem.
As if I hadn't tried to start it at least 5 times.
And so had said rescuer.
But when Mark comes along, the car starts instantly, as does anything that is not working in his absence.
But, I digress.
I have recently gotten a samsung tablet. So has Mark (surprise surprise, take ME shopping for new technology, but everybody gets the new technology) But, no, really, I would not know all the things it could do if he had not gotten a like machine, I most;y use it as a kindle, I play scrabble games on it, I go check out facebook, listen to NPR, I do email om it, I blog, and oh cool, we can use it to stream movies wirelessly onto our flat screen.
I know it oes a thousand more things, but that' s enough for me.
I'm going to swtch to it now, as a matter of fact.
Bye.
Tuesday, October 1, 2013
What's up with the handicapped accessible bathroom stall?
So the reason I am writing again..well, that is because this shit drives me CRAZY!!
(And, btw, it's all true, yes, I really have experienced these issues in person.)
I know I haven't posted in a while, (like, almost a year) but I am trying to get back into it, so feel free to shoot me ideas, and I'll do my best. For this (and possibly future posts) I will be creating my own abbreviations, because typing handicapped accessible bathroom/stall is going to get old real fast, so if you see HCAB you know what I am talking about, others may follow, and I'll fill you in as I go.
I was recently at an outdoor market in Baltimore Md. It was a nice market, but as anyone who has MS knows, you always need to know where the closest bathroom is, because you ALWAYS have to pee, and you don't always have control over where/when your bladder is going to decide that it has waited long enough. So, as we get to the market, I need to take a leak, and I see the port-a-johns, and we head that way.
So, of course there are lines, but wait, whats this? A HCAB port-a-john, and it has no line!! My lucky day. Oh bless you angel who supplies bathrooms up need
So I head that way on my scooter..but, what's this? It is LOCKED, with a note on the front that asks all HC ppl to head into the market, find the welcome desk, and get the combination for the lock.
Are they serious? Do they have NO fucking clue?
And let me back up to mention that if anyone was in need of this facility and could not stand up and shuffle to the door, they would not have been able to access this stall, because the unit was set up facing the others instead of the street, and only about 12 inches away from them, so, if you couldn't do the aforementioned gimpy shuffle, you were screwed, even if the unit had not been locked.
So, I see one of the other p-o-j"s has no line, and I scoot over there to perform the gimp shuffle, and finally get to relieve my bladder, with minimal leakage (thank you goddess of all weak bladders) and carry on with our foray into the market. On the way in, I do see the welcome desk/tent, and I go over and find out the combination for future reference (I know I will need to pee again before we leave the area) and we go check out the market, get some beautiful bread, and decide to have some lunch. We had places to go and things to do, so, on the way out, I go back to the p-o-j area, go up to the HCAB, and try the combination,...it doesn't work. Well, isn't that nifty? My friend zipped back into the "welcome" tent, to find out if we had misremembered the combination, only to be told that no, we had it right, but you really had to jerk down hard on the lock. Oh, really? Because there aren't any HC ppl who have problems with their hands or dexterity or strength? So, we got the stall open, but meanwhile I am fuming, and if I had taken the lock into the p-o-j with me, I most likely would have thrown it into the proper receptacle (on second thought it might break the honey dippers pump out truck, and it wasn't HIS fault that the john was locked) but Helen had it, so instead when I went out I got it from her, and I locked it through the latch in such a way that it was locked open, and announced to all the ppl waiting in line that the potty was open and available to all. What I should have done was go back to the "welcome" tent and explain to them in detail how this was not an acceptable way to offer the facility, in detail, and graphically, as only my previous readers and friends know that I could.I didn't have time that day to reeducate anyone, so I scotted to the car, and we went on our way.
Maybe having to drag themselves out to the poj area to retrieve the lock was enough of a message? No, not really. Me standing there in piss wet jeans, screaming obscenities would have been more of a lasting impression.
Next up..public bathrooms.
What exactly, is the appeal of the HC stall for able bodied women? Oh, I know it is bigger. Do you realize that the reason for this is to accommodate my scooter? Or my walker? Do you realize that there are hand rails to help ME and others like me to transfer from our personal mode of transportation to the commode? Did you think it was bigger so that you could change? (Yes, I see that a one a lot) So that you wouldn't feel claustrophobic? (that one I heard twice, as ladies came out, saw me waiting, or trying to get in the regular stall, and felt compelled to explain to me why they were in the HC stall ) Did you really need your own personal sink and mirror to do your make-up? ( some very very nice HC stall have this feature- and thank you designers of those bathrooms)
I'll tell you what, you can have the fucking MS, and you can have the HC stall, too, ok? Fair deal?
(And, btw, it's all true, yes, I really have experienced these issues in person.)
I know I haven't posted in a while, (like, almost a year) but I am trying to get back into it, so feel free to shoot me ideas, and I'll do my best. For this (and possibly future posts) I will be creating my own abbreviations, because typing handicapped accessible bathroom/stall is going to get old real fast, so if you see HCAB you know what I am talking about, others may follow, and I'll fill you in as I go.
I was recently at an outdoor market in Baltimore Md. It was a nice market, but as anyone who has MS knows, you always need to know where the closest bathroom is, because you ALWAYS have to pee, and you don't always have control over where/when your bladder is going to decide that it has waited long enough. So, as we get to the market, I need to take a leak, and I see the port-a-johns, and we head that way.
So, of course there are lines, but wait, whats this? A HCAB port-a-john, and it has no line!! My lucky day. Oh bless you angel who supplies bathrooms up need
So I head that way on my scooter..but, what's this? It is LOCKED, with a note on the front that asks all HC ppl to head into the market, find the welcome desk, and get the combination for the lock.
Are they serious? Do they have NO fucking clue?
And let me back up to mention that if anyone was in need of this facility and could not stand up and shuffle to the door, they would not have been able to access this stall, because the unit was set up facing the others instead of the street, and only about 12 inches away from them, so, if you couldn't do the aforementioned gimpy shuffle, you were screwed, even if the unit had not been locked.
So, I see one of the other p-o-j"s has no line, and I scoot over there to perform the gimp shuffle, and finally get to relieve my bladder, with minimal leakage (thank you goddess of all weak bladders) and carry on with our foray into the market. On the way in, I do see the welcome desk/tent, and I go over and find out the combination for future reference (I know I will need to pee again before we leave the area) and we go check out the market, get some beautiful bread, and decide to have some lunch. We had places to go and things to do, so, on the way out, I go back to the p-o-j area, go up to the HCAB, and try the combination,...it doesn't work. Well, isn't that nifty? My friend zipped back into the "welcome" tent, to find out if we had misremembered the combination, only to be told that no, we had it right, but you really had to jerk down hard on the lock. Oh, really? Because there aren't any HC ppl who have problems with their hands or dexterity or strength? So, we got the stall open, but meanwhile I am fuming, and if I had taken the lock into the p-o-j with me, I most likely would have thrown it into the proper receptacle (on second thought it might break the honey dippers pump out truck, and it wasn't HIS fault that the john was locked) but Helen had it, so instead when I went out I got it from her, and I locked it through the latch in such a way that it was locked open, and announced to all the ppl waiting in line that the potty was open and available to all. What I should have done was go back to the "welcome" tent and explain to them in detail how this was not an acceptable way to offer the facility, in detail, and graphically, as only my previous readers and friends know that I could.I didn't have time that day to reeducate anyone, so I scotted to the car, and we went on our way.
Maybe having to drag themselves out to the poj area to retrieve the lock was enough of a message? No, not really. Me standing there in piss wet jeans, screaming obscenities would have been more of a lasting impression.
Next up..public bathrooms.
What exactly, is the appeal of the HC stall for able bodied women? Oh, I know it is bigger. Do you realize that the reason for this is to accommodate my scooter? Or my walker? Do you realize that there are hand rails to help ME and others like me to transfer from our personal mode of transportation to the commode? Did you think it was bigger so that you could change? (Yes, I see that a one a lot) So that you wouldn't feel claustrophobic? (that one I heard twice, as ladies came out, saw me waiting, or trying to get in the regular stall, and felt compelled to explain to me why they were in the HC stall ) Did you really need your own personal sink and mirror to do your make-up? ( some very very nice HC stall have this feature- and thank you designers of those bathrooms)
I'll tell you what, you can have the fucking MS, and you can have the HC stall, too, ok? Fair deal?
I have one, really
So I did write a post tonight, but I can't publish it, for some reason, so you will have to wait until morning, when I can get help from Mark. Grrrr. Technology, you know
I love it.
I love it.
Monday, September 30, 2013
2 lost pots... isn't technology wonderful?
so ayway, I started writing twice. this laptop shut down and when it came back Firefox clos ed itself so this will be a brief post as I am currently being menaced by a stink bug, and hve been cursed ny the mystery key board malady w here my cursor keeps jumping to new places in the text and picking up in the middle of the previous one' errrgh, you probably dont u nderstand, bur ignore all weird typing mistakes i ant keep going back to correct shit i would be here all night, aand I am starting to fade.
new blog game
my best friend, and tha does not even begin to describe our. relationship, she is my true other half. If th
e world exploded, as long As i HAd my girl, everything would be okay, we'd , take on the devil, cheek to cheek into hell, no fears.
but I digress: new blog game about to commence here is how it will work
my girl will send me a title, or a thrmr every day
including a few pertinent facts, but not the name, we'll refer to all exes as F D H
(we'll explain the initials and reason for using those particular letters later)
she will give me a few pertinent facts, and I may ask a few questions
Then I will make up a story, and publih it as my blog of the day a blf ast telling stor
we are going to have a blast telling stories about our lives
we'll fill you in on any details
if yous don't like it, well, we don't care
this is for me and her it is for fun for us to learn about each others lives. you don"t like it? too bad, do't let the door hit ya in the ass pal, tomorrows subject " can you believe it? a snap shot of a conversation between C and W...wait for it
new blog game
my best friend, and tha does not even begin to describe our. relationship, she is my true other half. If th
e world exploded, as long As i HAd my girl, everything would be okay, we'd , take on the devil, cheek to cheek into hell, no fears.
but I digress: new blog game about to commence here is how it will work
my girl will send me a title, or a thrmr every day
including a few pertinent facts, but not the name, we'll refer to all exes as F D H
(we'll explain the initials and reason for using those particular letters later)
she will give me a few pertinent facts, and I may ask a few questions
Then I will make up a story, and publih it as my blog of the day a blf ast telling stor
we are going to have a blast telling stories about our lives
we'll fill you in on any details
if yous don't like it, well, we don't care
this is for me and her it is for fun for us to learn about each others lives. you don"t like it? too bad, do't let the door hit ya in the ass pal, tomorrows subject " can you believe it? a snap shot of a conversation between C and W...wait for it
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