Any Decent Pain Groups? - Page 8

09-22-2006, 02:09 PM

Got the handy-van yesterday. It is amazing. The hydraulics that lower it when the ramp comes out is very cool. Everything is automated, except the straps to tie my chair down, but those tighten themselves down. My son's car seat is right next to me, so I get to interact with him as we travel (though he likes to kick my chair... good with the bad).
Making some small cards to inform those who park in the loading zones of the disabled parking spots that I have called the police on them and taken a photo of their car with my phone. The fine is pretty hefty in FL, but is used to be much more.
The thing in my side still hurts, but it is not a lymph, so it is either a cyst or tumor. I try to think cyst, but I get them and none of them hurt. I also have developed kidney stones... like my back did not hurt enough already.
I am truly blessed to have the family and support structure that I have. Most in my position would not have the home and now transport that I do. It is so hard to remain positive sometimes, pain is hard on one that way, but I do know it and try to keep it in mind. I am in love with my wife and love my son... but am very lonely for friends. When I got sick, people just kinda' stopped coming over. I know it is hard to see someone in pain, it is uncomfortable, I do not blame them.

wolf · 09-23-2006, 12:57 AM

Kick back, have some cranberry juice for the stones, and if it won't interact with your meds, add some vodka to it.

limey · 09-23-2006, 12:57 PM

Wolf gives good advice as usual. That's a bummer about your friends - but there's a few of us checking up on you here, ya'know

!

09-23-2006, 02:13 PM

Thanks... I will, without the vodka, I don't drink anymore.

Along with the van Just got a gift of a Zen Vision M 30g player... this thing is cool! Still have some to learn on it for the next few days (taking my time).

Amazing to me that this little thing has more memory and capabilities than the pc I had ten years ago. When you have to use a wheelchair to get around a lot, you spend a lot of time waiting.... waiting for people to finish-up in places you can't go, waiting for people to get things that you are shopping for when you cannot get to the items because most places don't put their rows far enough apart for the disabled (I cannot shop at JC Penny and some will not even help me shop, the manager at the one at Eagle Ridge Mall told me that and was pissed that I even asked), waiting for someone to get the car, waiting for meds to kick-in so you can move around safely, bla, bla, blaaaaa...

I had a smaller version, but it was too small for what I wanted it for. Just music is fine, but I wanted it for Buddhist, Quantum Physics and other lectures, MP3 books (just got a bunch of the BBC Holmes stories) and the like, they take-up too much memory for the smaller versions. With the meds I take it has been hard for me to read as much as I used to... my memory is not what it used to be and I tend to lose my place a lot. I can when at home in bed, in a quiet place, but when out, with a lot of distractions... the audio is really awesome! Even photos of my favorite art if I like.

This one can even download video from your television (tivo) or video player... crazy.

Strange how such a small thing can make such a difference in your life.

I keep it in perspective, grasping is suffering, this is just a thing and I only enjoy it for what it is… but it is nice to have and has made things much more comfortable for me… a distraction from the pain while out.

10-03-2006, 03:35 PM

The van is amazing... real freedom in a lot of ways.
Bad time the day before yesterday... day and night in the hospital. Don't know what happened really, probably something to do with my immune system, which is a joke. Could have been a rampant virus or a "bad" pill, which happens.

Griff · 10-08-2006, 07:51 AM

Quote:

Originally Posted by rkzenrage

The van is amazing... real freedom in a lot of ways.

Are you finding parking spaces to be big enough to allow you to get out?

Stormieweather · 10-09-2006, 09:57 AM

I check up on you too Rkzenrage

I'm sorry to hear about the mistreatment at Sea World and your hotel. I've never had to experience that exactly, only a fraction of it while pregnant. In any case, I sympathise. If I were in your place, I would take names and kick ass. Seriously. Get the name of the person or place and their supervisor or boss, then write a complaint to the home office. If nothing else, they may be better educated as to how to treat the next handicapped person they encounter. At best, they could be fired. Either way, a complaint would be some small vindication for how they behaved.

How is typing for you? Does it hurt to try to type letters or posts? If so, have you looked into voice recognition or voice integrated word processing software? Just a thought, that while sitting around waiting...and waiting...you could be recording thoughts or letters you could later have transcribed via the software.

The van and the Vision player sound awesome! Good to hear that you are finding things to help keep your days interesting and your activities varied.

Please do keep us updated as to how things are going!

Stormie

10-09-2006, 10:58 AM

Quote:

Originally Posted by Griff

Are you finding parking spaces to be big enough to allow you to get out?

When people who can walk are not parked in the loading spaces or people don't park next to me in the loading area... sure.

My son's school is the worst... I get no space there, they have eight and no one that parks in them is disabled, ever. It is a church.

It does hurt to type, but I'm not ready to give that up yet... I use a number of PCs and like that freedom. Everything hurts anyway, so this is not a big deal.
I'm going back to Sea World... it was weird how bad and constant it was that day. The planets must have been lined-up wrong or something. As for the architecture, that is just fucked, but so are a lot of things. Nothing can be done about that, so I will focus on what I can do something about.
Thanks for checking in.
Still kinda' sick, but slowly getting better. It will take some time.

limey · 10-09-2006, 05:09 PM

Glad to hear that things are getting a little better rk. Hope it continues that way.

WabUfvot5 · 10-03-2006, 10:55 PM

What do you mean by "bad" pill?

10-07-2006, 03:39 PM

Sometimes you get a pill with too much or too little med in it.
It is a virus my immune system is not dealing with.

WabUfvot5 · 10-07-2006, 08:29 PM

:S I hope I don't come across that. Viruses can be mean stuff. I hope you kick it soon. I'm guessing some of your medications suppress the immune system

morethanpretty · 10-11-2006, 09:16 AM

You might also want to seek out those with M.S. it robs you of your mobility, is more painful then I can imagine and takes your freedom as well. I'm friends with one woman who often doesn't leave her house for months...I've tried but its too hard for her.

10-11-2006, 05:16 PM

I have just joined www.apparelyzed.com, we will see.
So far they are really nice. Learned something weird today, there are disabled fetishists/lovers called Devotees. Also, Wannabees and Pretenders (one wants to be disabled and tries to get Drs. to harm them and the other pretends to be disabled, they creep me out).
Joined a couple of My Space groups as well. A Buddhist site, couple of pipe sites and disabled sites.

WabUfvot5 · 10-11-2006, 09:53 PM

That devotee thing extends even beyond the disabled. A similar thing happens to prison convicts! I suspect some types find comfort in knowing their devotion is unlikely to up and fly to Aruba on a whim. Sounds like the sites will be informative at the very least

09-23-2006, 12:57 AM	#2
wolf lobber of scimitars Join Date: Jul 2001 Location: Phila Burbs Posts: 20,774	Kick back, have some cranberry juice for the stones, and if it won't interact with your meds, add some vodka to it. __________________ wolf eht htiw og "Conspiracies are the norm, not the exception." --G. Edward Griffin The Creature from Jekyll Island High Priestess of the Church of the Whale Penis

09-23-2006, 12:57 PM	#3
limey Encroaching on your decrees Join Date: Feb 2004 Location: An island within the south-west coast of Scotland Posts: 7,016	Wolf gives good advice as usual. That's a bummer about your friends - but there's a few of us checking up on you here, ya'know ! __________________ Living it up on the edge ... of civilisation, within the southwest coast of

10-09-2006, 09:57 AM	#7
Stormieweather Wearing her bitch boots Join Date: Apr 2006 Location: Floriduh Posts: 1,181	I check up on you too Rkzenrage I'm sorry to hear about the mistreatment at Sea World and your hotel. I've never had to experience that exactly, only a fraction of it while pregnant. In any case, I sympathise. If I were in your place, I would take names and kick ass. Seriously. Get the name of the person or place and their supervisor or boss, then write a complaint to the home office. If nothing else, they may be better educated as to how to treat the next handicapped person they encounter. At best, they could be fired. Either way, a complaint would be some small vindication for how they behaved. How is typing for you? Does it hurt to try to type letters or posts? If so, have you looked into voice recognition or voice integrated word processing software? Just a thought, that while sitting around waiting...and waiting...you could be recording thoughts or letters you could later have transcribed via the software. The van and the Vision player sound awesome! Good to hear that you are finding things to help keep your days interesting and your activities varied. Please do keep us updated as to how things are going! Stormie __________________ "First they ignore you, then they ridicule you, then they fight you, then you win." - Mahatma Gandhi

10-09-2006, 05:09 PM	#9
limey Encroaching on your decrees Join Date: Feb 2004 Location: An island within the south-west coast of Scotland Posts: 7,016	Glad to hear that things are getting a little better rk. Hope it continues that way. __________________ Living it up on the edge ... of civilisation, within the southwest coast of

10-11-2006, 09:16 AM	#13
morethanpretty Thats "Miss Zipper Neck" to you. Join Date: Sep 2006 Location: little town (but not the littlest) in texas Posts: 2,957	You might also want to seek out those with M.S. it robs you of your mobility, is more painful then I can imagine and takes your freedom as well. I'm friends with one woman who often doesn't leave her house for months...I've tried but its too hard for her. __________________ Addicts may suck dick for coke, but love came up with the idea to put a dick in there to begin with. -Jack O'Brien

09-22-2006, 02:09 PM	#1
rkzenrage Guest Posts: n/a	Got the handy-van yesterday. It is amazing. The hydraulics that lower it when the ramp comes out is very cool. Everything is automated, except the straps to tie my chair down, but those tighten themselves down. My son's car seat is right next to me, so I get to interact with him as we travel (though he likes to kick my chair... good with the bad). Making some small cards to inform those who park in the loading zones of the disabled parking spots that I have called the police on them and taken a photo of their car with my phone. The fine is pretty hefty in FL, but is used to be much more. The thing in my side still hurts, but it is not a lymph, so it is either a cyst or tumor. I try to think cyst, but I get them and none of them hurt. I also have developed kidney stones... like my back did not hurt enough already. I am truly blessed to have the family and support structure that I have. Most in my position would not have the home and now transport that I do. It is so hard to remain positive sometimes, pain is hard on one that way, but I do know it and try to keep it in mind. I am in love with my wife and love my son... but am very lonely for friends. When I got sick, people just kinda' stopped coming over. I know it is hard to see someone in pain, it is uncomfortable, I do not blame them.

09-23-2006, 02:13 PM	#4
rkzenrage Guest Posts: n/a	Thanks... I will, without the vodka, I don't drink anymore. Along with the van Just got a gift of a Zen Vision M 30g player... this thing is cool! Still have some to learn on it for the next few days (taking my time). Amazing to me that this little thing has more memory and capabilities than the pc I had ten years ago. When you have to use a wheelchair to get around a lot, you spend a lot of time waiting.... waiting for people to finish-up in places you can't go, waiting for people to get things that you are shopping for when you cannot get to the items because most places don't put their rows far enough apart for the disabled (I cannot shop at JC Penny and some will not even help me shop, the manager at the one at Eagle Ridge Mall told me that and was pissed that I even asked), waiting for someone to get the car, waiting for meds to kick-in so you can move around safely, bla, bla, blaaaaa... I had a smaller version, but it was too small for what I wanted it for. Just music is fine, but I wanted it for Buddhist, Quantum Physics and other lectures, MP3 books (just got a bunch of the BBC Holmes stories) and the like, they take-up too much memory for the smaller versions. With the meds I take it has been hard for me to read as much as I used to... my memory is not what it used to be and I tend to lose my place a lot. I can when at home in bed, in a quiet place, but when out, with a lot of distractions... the audio is really awesome! Even photos of my favorite art if I like. This one can even download video from your television (tivo) or video player... crazy. Strange how such a small thing can make such a difference in your life. I keep it in perspective, grasping is suffering, this is just a thing and I only enjoy it for what it is… but it is nice to have and has made things much more comfortable for me… a distraction from the pain while out.

10-03-2006, 03:35 PM	#5
rkzenrage Guest Posts: n/a	The van is amazing... real freedom in a lot of ways. Bad time the day before yesterday... day and night in the hospital. Don't know what happened really, probably something to do with my immune system, which is a joke. Could have been a rampant virus or a "bad" pill, which happens.

10-03-2006, 10:55 PM	#10
WabUfvot5 Operations Operative Join Date: May 2002 Posts: 634	What do you mean by "bad" pill?

10-07-2006, 03:39 PM	#11
rkzenrage Guest Posts: n/a	Sometimes you get a pill with too much or too little med in it. It is a virus my immune system is not dealing with.

10-07-2006, 08:29 PM	#12
WabUfvot5 Operations Operative Join Date: May 2002 Posts: 634	:S I hope I don't come across that. Viruses can be mean stuff. I hope you kick it soon. I'm guessing some of your medications suppress the immune system

10-11-2006, 05:16 PM	#14
rkzenrage Guest Posts: n/a	I have just joined www.apparelyzed.com, we will see. So far they are really nice. Learned something weird today, there are disabled fetishists/lovers called Devotees. Also, Wannabees and Pretenders (one wants to be disabled and tries to get Drs. to harm them and the other pretends to be disabled, they creep me out). Joined a couple of My Space groups as well. A Buddhist site, couple of pipe sites and disabled sites.

10-11-2006, 09:53 PM	#15
WabUfvot5 Operations Operative Join Date: May 2002 Posts: 634	That devotee thing extends even beyond the disabled. A similar thing happens to prison convicts! I suspect some types find comfort in knowing their devotion is unlikely to up and fly to Aruba on a whim. Sounds like the sites will be informative at the very least

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