BikerBabe

OK, I'll spill the beans here with my story. My neighbor has Cerebral Palsy and uses a power chair when he is outside his home. Most of the time I will ride my bike and he travels behind me in his chair when we go places together.

One day we needed to go up to the grocery store to get some Pepsi, which is easily put in his lap on the return trip home. I decided to walk that day though. Keep in mind here we are both 50ish and have the same warped sense of humor. Probably not a good combination. LOL.

It was rush hour when we took off for the two block trip and we live on one of the major roads in town, so it was packed bumper to bumper with cars. As soon as we got out on the sidewalk from the driveway of our complex, I just couldn't resist it .. I jumped on the back of his chair and held on by wrapping my arms around the headrest.

Of course I hadn't pulled my hair back that day, so it was hanging loose. (For those that don't now, it's down to the bottom of my butt now in length and NO David, you still can't have it for your fiddle bow.) People driving home after a long day at work proceeded to get a 'show' of two old farts having the time of their lives, my hair flying in all directions around us and the two of us laughing from the fun of doing it just as they were at seeing such an amusing sight on their way home from work.

We are now thinking about digging out my wheelchair from the closet where I stashed it once I no longer needed it. Mine is a regular one, so I need someone to push me or move it myself. We are going to get a long piece of rope, tie one end to his power chair and I'll hold on to the other end behind him and he will pull me around the block. That should give the homebound rush hour folks a good laugh too we figure. If possible, we are going to try to do it on a day when my soon to be ex hubby is around with his camera, which also does video. Then I could put it up on My Space along with the video I have there now of me on my bicycle at night with all my blinky lights going, so everyone can see I am really very safe riding after dark.

Handicapped people are no different than us, except they are confined to sitting in a chair. They still have the same emotions and thoughts we do and in the case of my neighbor and I, can be a lot of fun to hang out with! I think the only thing I really hated when I was using my chair full time was that smile people would give me as they looked down at me sitting in it. It always felt like they were 'sorry' for me and couldn't think of anything to say, so would smile to cover up that fact. I've heard that from others in chairs too. When I see someone in a chair I will say hi to them the same way I would an able bodied person or at times, if they look like they have a good sense of humor, crack a line like 'well darn, wish I had my chair with me, we could have a race'. That one is a good ice breaker and makes it very clear I don't feel any different about them than anyone else I meet while out and about.

My neighbor's chair died recently (it was pretty old) and they weren't able to find the parts needed to fix it. For now he's using a loaner and they are building him a new chair. I can't wait till he gets it so I can take a ride on it like I did the old one. LOL. A new one will look better in video too when we do our rope pull. His old chair was starting to really show it's age. Hopefully in a couple of weeks he'll have his new one and then as soon as we find a long rope, we'll do our video. If you think Loren would get a kick out of it David, make sure to tell me and I'll send you the URL to where it will be online as soon as I get it uploaded.

I remember well one branch leader who decided to take me on. First the background then I'll bring him into the story.

My then hubby and I were sent to Pocotello, Idaho for our WOW year. NOT exactly the place to send 2 hippies and 2 single women as the only family going there. We were allowed to rent separate places, which was the only good part of the whole WOW experience. The ladies found an apartment and we found a single wide mobile home not too far away from each other.

By the end of the first month there we had our nice rednecked neighbors shooting off their guns at night to get our attention. The next morning we'd get presents from them ... shotgun shells left on the windshield of our car. Next the girls were over one day and when I walked down the hallway back to our bedroom, I encountered one of them near the doorway. She had plastered my hubby against the wall and had one big liplock on him as he struggled to get free from her. (He wasn't a big man physically, she was actually bigger than him in height and weight.) If I wasn't so angry at what I saw I probably would have laughed given how funny it did look. I asked very loudly 'just what the hell do you think you are doing?' and she then realized I was there. She backed off him quick and said 'oh I was just giving him a little hug for being such a great man of God'. I said something like 'yeah, it looked like that too, uh huh, now get the hell out of our house'.

Next I call VP and told him about what was going on. He said 'leave and leave now, you can go out WOW again another year, but that is not the place for you to be this year'. With his blessing, we packed up everything in our car and drove home. We stayed at my mom's house when we first got back till we could find an apartment. Then the branch leader heard we were there and it was just a couple/few days. Next, one morning at like 7:30 am we heard LOUD persistant knocking on the outside porch screen door by someone. We had been out with friends till 4 am so with just a couple hours of sleep it took me a minute to get up, get a robe on and walk outside to the screen door to see what the racket was about. It was the Branch leader, with the local Twig and asst. Twig leaders. I asked them to return later, explaining we had just gotten to bed. He insistsed on talking to us right away. I finally said ok, come on inside and he stomped into the house.

I went in the bedroom and told my hubby to get up and then went into the kitchen to grab a Pepsi to try to get caffine in me to wake me up a little. That totally annoyed the BL because I kept him waiting and he said so. I told him if he wanted to talk to me he could, but he had to let me be coherent or forget it and leave. Of course he stayed.

I sat down, lit up a cig and then he started.....'GET YOUR ASSES BACK TO IDAHO RIGHT NOW!' Yelled at the top of his lungs. I just looked at him and said no, sorry, we aren't going back and VP told us to leave and his word overrules anything you have to say to me as far as I'm concerned. He proceeded to start calling me nice names such as slut, whore, etc and accused me of coming 'home' to where all my friends were so I could sleep around with the guys. I said to him 'Ummm, I am married and faithful, I think you should be more concerned with the asst. twig leader here who's pregnant with a married man's child'. That was supposed to be secret info that only the 'few' knew, but I had learned about it and I wish I had a picture of the look on her face when I said it. She thought I had no idea till I said that about her. It also pretty much the key to his explosive 'GET YOUR ASSES BACK TO IDAHO NOW!' once again.

I said 'if you have nothing more to say than the same things, please leave now or I'm going to help you leave by throwing you thru the picture window'. He saw I was dead serious and while I may not have been able physically to actually toss him thru a window, I could call the police and ask for an officer to come there and escort him off my property. He and the girls took their leave informing me as they walked out that I was banned from every twig in the entire state. I thought that was pretty cool and said so, which just upset him more. Hahaha. We had already decided, due to lack of jobs in that area, we were going to move to the state my hubby was originally from anyway, the BL just didn't know that and I wasn't about to tell him. Being banned from twigs in a state I wouldn't be living in didn't do me any harm at all.

To this day I still don't get it why that BL didn't *get it* that we left the WOW field because VP told us to due to the danger he felt we were in and the exchange between our WOW sister and my hubby. Talk about being on a power trip ... to think that he could order us to go against what VP said to do and we'd obey him. Just totally crazy and this all happened in 1977, long before the face meltings became popular.

I had gotten one from that twig leader a year prior also. Or should I say she tried to give me one. She started yelling and I told her to shove it or something like that and turned around and walked out of her apartment. Next she tried it to my mom, yelling about me and my mom told her to quit calling me names and accusing me of untrue things, none of which was a twig leader's business anyway and then she also walked out of the woman's apartment. The twig leader gave up at that point, there was no one else she could talk to and try to turn them against me. I didn't hang out with anyone from the twig, all my friends were non TWI people.

Anyway, that's how my WOW year started and quickly ended. I never went again, no desire in the least. I never ran into that BL again thru the years, but did get into it years later with one from Florida who had the same attitude. He really didn't like me, but put up with me cause he did love my mom dearly. He only had to deal with me when I was there visiting her anyway and then only if he happened to stop by or we went to some event together and ran into him.

I never did do authority well and I don't do as I'm told to do without questioning it from all angles first to make sure it's something good for me. Needless to say, I spent a lot of my time in TWI upsetting everyone higher up than me, which was almost everyone since I never went higher than the Int. class by choice.

I put this 'song' on my bulletin section of myspace. Thought I'd paste a copy here and hope it gives you all a laugh too.

Happy Birthday to me ......

Happy Birthday to me ....

Happy Birthday I hit the big 5-0 ...

Happy Birthday, hello AARP.

Hahaha, when I got online, windows wasn't able to be used yet on the net. The good old days when everyone was using a unix shell account and things got done easily. Once the net got popular though and 'heard about', along came windows and Macs and GUI to the internet. *sigh* That's when I got my first ever spam email and started hearing about viruses.

I stayed with my dumb term and modem to my shell for a long time, then even after getting a computer didn't use windows and a PPP account, stuck with my shell since I mostly did IRC anyway and owning the network it was easier to already be in a shell with screen installed so I could open a new window and do any work needed on the code. I won't go into all I have to go thru to even get to the shell account today using windows, it would be a book. LOL, *big* difference.

My downfall was having windows 3.1 on that first computer and learning about games. I was an instantly hooked gamer and today build my own windows computers so I can play the 100+ games I have amassed over the years. I also moved and the ISP's of today don't offer shell accounts anymore really. I still have one on the box my IRC network runs on of course, but the other 13 I had scattered around the world way back when are all long gone as the little ISP's got bought out by the big guys.

I still remember having to learn to use windows. I think the guys online in IRC who helped me wanted to shoot me on a daily basis ... it was soooo hard to learn and I always had to know where my mouse was cause I couldn't type in my commands anymore, I had to use that darn mouse to point and click at little things on the screen. *sigh* Soooo much slower and I was at that point in time sitting on a love sofa at a makeshift desk out of boxes, so constantly lost that mouse under the cushions. I did finally learn and made the transition much to the guys relief and was functional in pIRCh without their help anymore.

So there ya have it from the odd one who learned all this stuff backwards so to speak and had to go from unix to windows instead of the normal windows to trying out unix. These days I'm running FreeBSD on my IRC box and am very pelased with it. Didn't see it mentioned in other posts, so wanted to get the name out there for those thinking of trying out the different flavors of *nix. It's closer to unix than linux and since I learned on a DEC 2100 box (that was such a sweet machine the ISP/my boyfriend had), I'm still inclined to go with the proggies that use unix commands instead of linux. There is a different in quite a few of them, even in the simple IRC stuff I do. I already was comfy with it all though, so the changes in the way a few commands were typed just depended on my remembering them ... or typing them wrong and watching the box yell at me. LOL. Windows was much harder for me to learn than unix when it came to internet stuff, but I realize that very few will ever agree with me. Had I learned windows first, I probably wouldn't feel the way I do either, but I didn't so for me it was harder to learn after using unix for 5 or 6 years in here.

Hey birthday buddy. I hope yours is a good one this year. :) Do you think this cool spell (high 90's folks, that's unheard of in Phoenix in July, it should be about 110 to 120) is our present from God? Who else could make such a wonderful change to our horrible summer heat and with such perfect timing? Hehe, regardless, enjoy it, have a good one and hope to catch up with you in chat if we ever both get in there at same time. I miss talking to ya!

Twirling a flag IS a lot harder than it looks (you are so right there Bramble), plus requires a good memory for all the routines and fast reflexes when another twirler gets too close to you and you have to duck fast or end up getting smacked upside your head with their flag. I got smacked once, trust me, it HURTS!

I twirled thru all my jr high and high school years in the band. I loved it and didn't enjoy playing my clarinet and marching. I changed schools my senior year and was told later that I was the one the graduating squad leader had picked to take her place my senior year. Obviously I didn't get to do that, but just knowing she thought I could lead the flag squad and come up with new routines for the songs that year meant more than words could say to me.

LOL ...I meant for this to be a poll but clicked on the wrong button...oh well...well do you think?

The best thing I found for pain during the years I couldn't afford medical help. I'd get it from kind friends who would share some with me when they could get it. I don't like the high, so only smoked what I needed to get the pain gone so I could get some sleep at night.

I would still smoke a bowl before bedtime nightly if I could, but the legal agreement I signed with my pain doc allows me to take no drugs other than the ones I get from his office and the other doctors I see. The drugs I get from my GP and G.I. docs are on a list at the pain doc's, along with what he gives me so they know what should and should not show up in the random pee tests I'm given. If any drugs not on the list are found in the tests, I would be dropped as a patient.

I don't really miss it at all. My pain doc has me on enough pain meds that I don't need anything else these days and he allows me to take meds to help me sleep, which is the other reason I smoked pot. I have a paradoxical reaction to a lot of meds, meaning the pain meds that would put most of you to sleep do the opposite to me. They keep me awake, so then I need to take something else in order for me to get some sleep at night. We experimented with a few different things and doses until we hit on what worked best and now I am able to take the pain meds and sleep meds and actually sleep thru the night. I used to wake up every half hour to every hour on the half/hour to hour all night long, so I'm loving this sleep thing now that I'm getting it again. LOL.

I am totally in favor of making it a legal drug for pain patients and those who have other medical conditions that it helps. I don't see that ever becoming a reality though, since the most outspoken group are the people who smoke it to get high and have no medical problems. They make it look bad and that reflects on the people who really DO need it's medical properties.

Hey Mo. Aren't doctors, their tests and all the other crap that goes along with it fun? *sigh* I finally got on Social Security and Medicaid, so I'm going thru it all now for my Crohn's and Fibro and the related medical probs that go with all things auto immune.

All I can say is to hang in there. I know how strong you are and stubborn, that alone tells me you *will* walk out of there and back into the life you had to put on hold for awhile. If I could do it, so can you.

I was down to 76 lbs again by the time I finally got all the paperwork, doc visits and referrals, all the fun stuff the Gov. requires done and now 8 months later I'm at 104 pounds, totally out of pain and am watching my wheelchair and cane gathering dust in the closet. I am back on my bike and riding for miles to get around town, just like I did years ago before this latest flare started. I still miss having a car, but there's nothing like the feel of the wind in my face as I fly down the street on my bike, feeling like a teenager again.

Not gonna tell you it's gonna be easy, you know from past experience it's not. You also know the end result is worth all the pain and struggle at first that gets us to our goal of having our lives back. Keep your eye on the goal and you will be there before you know it. You will be in my prayers as you work your way there. Love ya Lady. BIG *hugs* and hope to see you in chat once you are back home and feel up to stopping in.

I'm with David on this one. I don't have a TV, so wouldn't have any idea what was being talked about in there.

Now computer games are another story. I have tons of them, personally finding games much more fun than TV. I like the interaction, the eye/hand coordination they build and with games I'm *doing* something, not just sitting and vegging out watching a screen. TV is fun once in a long while at friends houses, but games win out here and extra money is saved up and goes to new computer upgrades and games when they are released.

They still own the domain. I'm thinking along the lines that they are changing their hosting company and that is why the site isn't coming up. Plesk is a company that sells software to help you host your domain name. They are probably having problems with technical things when all we see is the Plesk info on the site. That means it's defaulted back to 'nothing' and they have work to do so the world can see their website again. Check again in a day or two and I bet their site will be back up and running fine.

Here is all their WHOIS info that tells you who owns the domain, the admin of it and the name servers that host it. Below their's is the WHOIS of the company that owns the name server computers physically. I'm sure they are all working together to get the problem fixed.

Registrant:

THE WAY INTERNATIONAL

P.O. BOX 328

NEW KNOXVILLE, OH 45871

US

Domain Name: THEWAY.ORG

Administrative Contact , Technical Contact :

Longley, Steve

SteveLongley@theway.org

P.O. BOX 328

NEW KNOXVILLE, OH 45871

US

Phone: 419-753-2523

Fax: 419-753-2903

Record expires on 29-Nov-2014

Record created on 20-Sep-2002

Database last updated on 25-Jul-2005

Domain servers in listed order: Manage DNS

WIN01NS1.DNS-HE.COM

WIN01NS2.DNS-HE.COM

Show underlying registry data for this record

IP Address: 66.221.15.146 (ARIN & RIPE IP search)

IP Location: US(UNITED STATES)-TEXAS-FT. WORTH

Record Type: Domain Name

Server Type: Apache 1

Web Site Status: Active

DMOZ no listings

Y! Directory: see listings

Web Site Title: Welcome to The Way!

Meta Description: THE WAY INTERNATIONAL OFFICIAL SITE, a Biblical research, teaching, and fellowship ministry dedicated to presenting the accuracy and practicality of God's Word.

Meta Keywords: Way International, Way, Bible, Bible study, Biblical, research, teaching, fellowship, home fellowship, home fellowships, abundance, abundant, abundant life, power, truth, Christian, ministry, non denominational, nondenominational, disciple, Way Disciple,

Secure: No

E-commerce: No

Traffic Ranking: 1

Data as of: 18-Jul-2006

-----------------------------

Registration Service Provided By: midPhase Services, Inc.

Contact: dan@midphase.com

Domain name: DNS-HE.COM

Registrant Contact:

dkAds Network, Inc.

NA NA (NA)

NA

Fax:

1954 Jamestown Dr

Palatine, IL 60074

US

Administrative Contact:

NA

Dan Ushman (zboca@midphase.com)

84793467201

Fax:

dkAds Network, Inc.

1954 Jamestown Dr

Palatine, IL 60074

US

Technical Contact:

NA

Dan Ushman (zboca@midphase.com)

84793467201

Fax:

dkAds Network, Inc.

1954 Jamestown Dr

Palatine, IL 60074

US

Status: Locked

Name Servers:

NS1.DNS-HE.COM

NS2.DNS-HE.COM

Creation date: 08 Sep 2003 19:19:15

Expiration date: 08 Sep 2012 19:19:15

Normally when a site is down for a short time as work is being done on it, a router goes out somewhere preventing you from reaching the site for a few minutes or the company that hosts it is fixing a problem, we call it a 'net burp'. In this case though, considering we are dealing with TWI, I think it would be more appropriate to call it a 'net spit in their direction'.

(Yes, guys, I DO know what I'm to do after a crack like that. I'm now heading off to sit on the Ugly Orange Couch and slap my fingers for acting up like that, as after 14 years online they *should* know better than to say such things..... LOL.)

How very sad for her family and friends. I cried with them when I read your post. She sounds like she was such a wonderful person to be a friend to and of. :(

Hahahahahaha. I was just getting ready to post that picture and you beat me to it Sudo. I also *had* to keep a copy of it. I, for another, miss his posts so much. He was always great to read and I wish he'd drop in and say hi to all of us oldtimers who remember the day he posted this picture of himself.

(Who knows, maybe he's loosened up a bit over the years and this time we really could talk him into doing the picture in front of the chair! LOL, we gave it our best try I remember, that was a fun thread.)

Larry, come out, come out, from wherever you are! :)

BikerBabe,

thanks for your insight and explanation. I guess I never thought about it like that. People do back away when they are in an uncomfortable situation and don't know how to handle it. I guess that is human nature. I'm glad you have folks here you can confide in... I guess most of us here understand being isolated in a crowd and the need to vent sometimes! I'm glad you are doing better. I hope Freeatlast can find some relief as well.

BikerBabe,

Great post. Thanks for sharing your insight. I never thought about it from your perspective. I have found that when dealing with people who are dealing with tremendous physical pain or a death in the family, etc., that even taking their hand and saying something along the lines of 'I don't know what to say to you' at least indicates that you're there for them if they need to talk or vent. At least most of the people I've dealt with seemed to be encouraged by it.

You both explained it every well. It is human nature to back away and be timid of the things we don't understand and that scary feeling we know there is nothing we can do to 'fix it'. We women are worse than the men most of the time too, due to our mothering instinct which tells us to 'fix it'.

When there's a death or someone I know gets ill, I usually come up with some one liner that says something like 'There are no words, so I'm not gonna waste your time or mine trying to come up with any. Let's just sit here together and 'be'. We can talk about whatever comes to mind or not say a word and just get peaceful together, it's your choice'.

When I first met my next door neighbor who has Cerebral Palsy and uses a power chair, out on the walkway, I said to him 'well darn, I finally get strong enough to get out of my chair and NOW I meet you .. shoot .. well, one day I'll dig mine out of the closet and we'll hit the parking lot for some chair races, sound cool?' He about fell out of his chair laughing at me. (He's 50 yrs old like I almost am, the mind pic alone was great.) Since that time we've come up with a better idea. We're gonna get a long rope, put his chair in front of mine (his is powered, mine is manual) and he will hold one end of the rope and I'll hold the other. Then he will give me a 'tow' down the street so we can see how many people we can get laughing as they drive by. We live on a very busy street too, so that makes it all the more fun to plan out. We will try to get it on video too so I can post it online.

I've also point blank told him that when he's out of his chair and hobbling around his apartment, he reminds me of me last year when I couldn't hardly walk due to muscle weakness. We have fun comparing notes of the 'best' places we've dropped like a rock or gotten stuck in our chairs. He's told me since we met that he has so much fun with me because I'm not afraid to talk about it and can make the fun jokes that gets us thru every day. I've always been the type who'd rather laugh than cry, so I try to find the humor in every situation.

Another day, a couple weeks ago I went over to the store with him and on the way there I just hopped on the back end of his chair, grabbed on around his headrest and went for a ride. Man, that was fun, but we came to a pretty bumpy part of the sidewalk and so I hopped off at that point. Didn't want to take a chance of tipping us over! We'll find a better area of sidewalk and do it again one day, we had a riot and everyone driving home from work that came by us and noticed gave us a laugh and a wave. :)

Gotta end this for now. I was supposed to ride up to the bike store yesterday to get the light put on my bike so I can start riding now after dark. Once it hits over 100 degrees daytime here, we try not to go out till after the sun goes down and it cools off some. Instead I spent the day watching my manager remove my dead fridge that I woke up to find out of here and get a new one put in. Then by the time I got all the food moved into the new one I was pretty tired. I sat down and after a few minutes my computer's alarm went off saying it was overheating. I spent a half hour under my desk cleaning the dust out of all the fans, off the boards, etc and then when I booted back up, the vid card decided it didn't want to work right. After removing it, putting it back in, getting new drivers for it and the monitor and making some adjustments, I'm back to normal. By then it was too late to go to the store though. So I'm up early on just a few hours sleep to make sure I'm there shortly after they open this morning to get my light put on. Gotta stay safe out there on the road and after dark without good lights and good flashing LCD lights totally around the bike, you won't be seen and take a huge chance of getting run over. I saved up 150 bucks over the past few months so I would be able to do this once the weather got hot.

I've learned that some people (none in here obviously) get into a mindset similar to the one when someone dies. They really have no idea what to say, what to do and would love to just avoid the entire situation and have everything back as it was. They know that won't and can't happen, so they will use the most convenient excuse to justify to themselves or the 'group' of friends that they have a reason that is good enough to not come around and visit so often.

Heck, that's real easy with people like us that use the little strength we have just to get thru our day and do the absolutely necessary things. Housework, thank you cards, online things, parties, whatever it is you used to do always, just isn't a priority any more and would take away strength needed for you to have some quality of life. There's such a vast different between not being able to do things and not wanting to do them. They have never been in that position in their life, so it never crosses their little minds that you aren't the same anymore and pitching in and helping would mean more than they would ever know. They just find an excuse that suits them, so they feel no guilt in spending more time away from you than they used to.

I've had people choose not to want to be around me because of the pain meds I take. In real life I rarely tell anyone what I take, except the other pain patients at the clinic as we talk about what meds work or don't work for us. The second people hear Methadone they assume I'm a drug addict and say so via asking how much and what kind of drug I was abusing, before I was put on the Methadone. Sheesh. I again tell them I'm a pain patient, I've never abused drugs and they still don't understand many times. They don't get it that while Methadone is used to help heroin and other type opiate addicts detox off them if they can't do it on their own, it's also been found to be an excellent drug for people with intractable pain. Most pain patients feel it's the best, I agree with them. I feel no 'high' like all the other pain meds give you, I don't get cravings for 'more' as a lot of pain patients end up doing over time because the drug is made so you don't have that happen and should I ever lose my medicare, I could afford to buy a month's worth of Methadone for around 40 to 50 bucks probably for the amount I take. A month's worth of not even half the strength of Oxycontin or Morphine I'd need would cost 400 bucks at least. But ya know, I don't feel I should have to explain all that to anyone, if they are really my friend they would just be thrilled I was able to get the medicare and get the meds to get rid of the pain which enables me to eat and put weight on. I can say that in here because those that know me from chat WERE thrilled when I got the pain gone and would give updates on my weight over the months. I haven't told anyone in real life much, just say yeah if they do notice I've put on 25 pounds over the past 7 or 8 months.

Free, don't let any of 'em get to ya and make you sad. I learned the stress of it all isn't worth it. Give them a little more time if they do come visit without you asking them to and maybe the light will dawn soon. I sure hope it does, there are days when there's nothing like having a friend you can go to and whine your heart out, knowing he or she realizes it's healthy for you to do that ... when you have someone like him/her whom you trust enough to open up to and are assured it won't be taken wrong. It's good for you and should be an honor to them to be thought of in such a wonderful way by you.

If these friends don't come around, as others have already said .. it's time to find new friends. I know it sounds scary, but new friends can be fun as you get to know each other over time and talk about things new to both of you that your old friends would have no interest in hearing about again for the 10th time. :)

I wrote the following a couple years ago and posted it to a pro smokers forum to a smoking nanny who invaded us. I will update it to present day at the end:

This story is about a lady who fell in love with a nice young man back in 1994. They loved all the same things and did everything together, but they had one problem. He wasn't a smoker. In fact he was an anti smoker. He gave her a choice, quit smoking or they had to break apart. He was sensible enough to realize her 1 1/2 to 2 pack a day habit wouldn't allow for her to go outside every time she wanted to light up.

Blinded by love she agreed and went to visit her doctor. She asked him to put her on the patch so she could stop smoking. Her boyfriend surprised her with a trip to The Florida Keys as a thank you and they had a wonderful weekend vacation together. This also helped take her mind off smoking and the patch did work.

After a couple weeks the violent reaction she had to the patches was becoming apparent. The skin under each patch applied was bubbling up and becoming raw and bleeding. At only 5 feet tall even and 96 to 98 pounds, there were only so many areas of her body above the waist left to apply the patches. Each raw area was taking a couple weeks to heal, even with special prescription cream her doctor gave her.

After a month, down to the 2nd step of the 3 step patch system, she was starting to have such bad gut pains she was left screaming in agony. She went to see her doctor and he gave her pain pills for the gut, more cream (at 75 bucks an ounce tube) for the raw spots on her body and told her to quit using the patch and start smoking again, quitting was going to be the end of her.

She started smoking again, lost her boyfriend, moved into her own apartment and tried to find a part time job she could do while dealing with the gut pain that wasn't going away. Full time work was out of the question, she was too sick. Tests were also out of the question with no health insurance.

Now, let's fast forward a bit. It's now 1998 and she is living in Los Angeles and on the state health care, sicker still and trying to find a doctor to help. Over the years we skipped she had used ER's and seen a doctor on the rare occasions she could afford an office visit. She put up with being called a drug seeker, a liar and asked if she wanted to talk to a shrink. All she wanted was to find out why her gut hurt so badly.

The docs at UCLA ran a few minor tests, but since she didn't have insurance, just the state care, they really weren't much help. She got lucky for awhile and got some pain pills to help the pain, but the docs would never really try to find out what was wrong. She was reduced to eating one meal a day and then lying, curled up in a ball, screaming for an hour till the pain passed. (This was while on pain pills, they didn't touch that chronic pain that eating caused.)

She then met a nice man online and moved to Phoenix. He got her on the state health care there and took her to the local teaching hospital. By then she was down to 72 pounds, unable to walk under her own power (he carried her in his arms), and the pain was relentless. There she found the resident doctor willing to listen and believe in her. He ordered the barium gulp, iodine push, CT scan that found her Crohn's Disease. After being ignored for so many years, the only choice was surgery. Here is what was removed from inside her:

http://www.xworld.org/pix/guts3.jpg

That is the last foot of her small bowel and a bit of her large (colon). You can see the outside and how it was covered in scar tissue and held into the U shape from the Crohn's. The inside was 90% filled with scar tissue and the reason for all the pain as food tried to move thru it after she ate.

She went into remission after the surgery, but still had pain. It took 5 more years and 6 to 7 OB/GYN docs to find the one that realized what the rest of the pain was from. The doc ordered a test on an Xray taking toilet that showed how her uterus was tilted into her colon, causing bowel obstructions. She also had a rectocele, a breakdown of the wall of muscle/skin between the vaginal and rectal openings so it formed a pouch that caused even yet worse obstructions of stool. She was put into surgery again and the doctor fixed the rectocele and removed her uterus. She found out then that this is something that happens to some women with Crohn's and was related and considered a side effect to the disease.

The skin of the palms of her hands and fingers was also getting covered in little water type blisters, same as what she got under those nicotine patches so many years ago. It's called EBA, a bubbling skin disease 4 out of every million people with Crohn's gets and she never goes a day now without some raw areas on her hands that are painful.

Finally she was painfree in her gut and she did a detox off the high amounts of painkillers she had been on. 400 mg a day of morphine and 2 Vicodin ES every 4 hours. She got her weight back up to 84 pounds when she started absorbing the food she ate. Then the Crohn's flared again.

I'm that woman.

I got the word I was approved for SSI, but my husband makes too much money at 9.50 an hour for me to get any from them, which then translates into no state medical unless I get SSI monies first. I'm again passing out from the pain after I dare to try to eat something. I feel they will have to surgically remove more of my small bowel that this flare has destroyed. I'm not sure what I will do at this point and may die from a non fatal disease or end up in emergency surgery at the last minute when my guts explode from scar tissue obstruction.

To the nannies who don't like smokers, I say this: Well, enjoy paying for my furture medical care one way or another, because trying to appease an anti smoker, I have more than paid the price. Before I tried to quit I was never sick. I was teaching dance in a club and dancing non stop for 6 to 8 hours every night. I rode a bike 20 miles a day, today I use a wheelchair to get around.

Smoking HELPS those with Colitis and some with Crohn's. Those who don't smoke are put on the patch if they can handle it. Smoking helps them get into remission or stay there IF they haven't previously tried to quit and then flared, such as in my case. There is no hope for me, I'm stuck like this for the rest of my life. I take it day by day and deal the best I can. I'm homebound, I watch the world go by me as I look out my window.

I wanted to take this opportunity to thank you for caring so much about me and my health that you and your type talked me into trying to quit smoking. It's ok that I have no life any more, it's ok I can't go anywhere with all the smoking bans in place, it's ok because YOU are paranoid of 2nd hand smoke which has been proven not to be harmful, it just doesn't smell good to you. Unless you have a breathing problem, it won't hurt you and even that has now been questioned. I realize you don't care the cost to me, in fact I'm sure you are overjoyed I won't be anywhere near you with my cigarette that keeps me a little healthier. You aren't capable of thinking of anyone else when it comes right down to it, you only care about yourself and your selfish reasons.

Just remember when they decide to take away your alcohol or your soda or tell you to diet. It's no different than taking away my cigarettes. If it offends someone, get rid of it. Don't you dare utter a word of complaint or expect me to have your back. It won't affect me, I can't go out any longer and have a good time, smokers aren't allowed inside most buildings these days.

Present day:

My husband and I are now separated and getting divorced. This way I was able to get the SSI and medicare, since I no longer had income (they considered his mine too). I was down to 76 pounds by the time I started on the medicare and got started back going to doctors for the various medical problems I have. (Crohn's of course, the skin probs from it, the Fibromyalgia, the IBS and the migraines.)

Today, 7 months later I'm at 101 pounds. I've never weighed this much in my entire life, unless I was pregnant. I feel great and look normal again, instead of like I just walked out of a death camp. I still have good and bad days, but my new G.I. doc is running tests and will figure out what he thinks is best for me soon, meds or surgery. The pain will always be there, if the Crohn's isn't acting up, the Fibro will be. Haha. I was referred to the best pain doctor in the state and he's not scared of my high tolerance to pain meds and has me on 120 mg of methadone a day. I'm now able to walk 3 blocks to the grocery store on really good days, but most of the time I ride my mountain bike, which I'm able to go 5 or more miles now without breaking a sweat. My goal is to get back to the 20 miles I used to ride a day. I only get 623 bucks a month from SSI, so I know I will never be able to afford a car on that. It is just enough to cover my bills and the 99 bucks of food stamps takes care of my food each month.

I talked to my sister last week in IM. She said to me 'now I know why you told me to never quit smoking'. She didn't listen, she quit and her pain level went from something a tylenol would handle to having to take Lortab every 4 to 6 hours and her tolerance was building fast. She knew she'd end up like me soon on the hard pain drugs for life if she didn't do something. She started smoking again and now she's almost back to 'normal' for her where over the counter pain meds are enough to work for her pain. She has Ulcerative Colitis, which is almost the same as Crohn's, except it only affects the Colon, not the entire digestive system as my Crohn's does. I am happy my experience helped her realize quickly what was causing the pain increase and she went right out and bought a pack of cigarettes. Had I known that all those years ago, I wouldn't have waited as long as I did, which was too long. I'll never be like I was, but smoking keeps me a LOT healthier than I would be if I didn't smoke. That would kill me and I'd really hate to die from a non fatal disease, just to please some smoking nanny's sensitive nose.

(Note: I do not consider people with breathing problems anti's and nannies. I will NOT light up around them or make sure we are outside and I'm downwind, then smoking after getting their permission. Krys and I have talked about this at length and she can confirm what I'm saying if anyone should question it.)

My heart broke hearing that from my sis. It's bad enough one of us has to live like this, but she's catching up with me with her Colitis and Fibro as the years go by and I hate seeing it. So I guess at this point you can also apply my above story to my sister too now that she's quit and also went from doing anything she wanted to being homebound in chronic pain.

There are quite a few other diseases they have found that smoking helps keep at bay, but do you ever hear about it on the news? Of course not, that would prove how much the nannies and antis have lied to the general public about 2nd hand smoke and we smokers would possibly get some of the laws repealed and get some of our rights back.

For those smokers here, if you don't mind generics, are you aware you can order cigarettes online from the Indian reservations and after tax and COD charges the cost comes to about 15 bucks a carton. I've been buying from allnativesmokeshop.com for years now and have saved a bundle. I smoke 6 cartons a month and they cost me right around 90 bucks. The government won't allow credit card companies, UPS and FedEX to work with online smoke companies anymore, so you pay via COD/money order when they arrive by US Mail. I order and the box will arrive in 3 days times .. sometimes even in 2! I smoke their Seneca Menthol brand and really like them. They are comparable to any name brand I smoked in the past and don't cost me 40 bucks a carton that I'd pay locally. So if y'all want to save some bucks, check out their website and try them once at least. I will tell you I prefer to call their 800 number (it's 24 hours) to place my orders rather than using their website, but that's just my personal choice. I prefer dealing with live people when possible and as soon as my order is put in, sometimes even before we hang up the phone, I have an email confirming it. They have a very nice system set up and they do NOT give out clients names to the government, they don't have to by law because they are a reservation, their own nation. Not all companies online that sell smokes are run by Indians, you must be careful, the ones that aren't have to give out client info when asked by the Government, then those clients get huge tax bills of 3000 or more bucks the Government feels they owe for buying online and avoiding their state tax. They can't do that when you buy from a reservation.

I wish someone would explain that to my ex. I have had physical problems for a great majority of the time we were together and he never took me seriously. <snip> One day he said I gotta leave this place before I throw up and I just wanted to cry because I have done all I physically could do.

My Crohn's got so bad in 1998 that I dropped to 72 pounds and was so weak I had to be carried. The first doctor I saw (a G.I. specialist) told me I was sick cause I smoked cigarettes. *sigh* I was so angry I went directly across the street from his office to the hospital clinic the resident doctors were that I used as my GP docs. I was on the state medical care at that point. I asked if they could slip me in to see one and they saw my soon to be hubby standing there with me in his arms, they had me in a room very quickly.

It took that resident, who knew nothing about Crohn's, to just be willing to listen to me and be willing to run a few tests. Something no other doc would do thru the first 40 years of my life due to having no insurance and not enough cash to pay for tests, not to mention they didn't believe me anyway, I looked fine, they always ended up asking me if I'd like them to refer me to a nice shrink they knew. :(

The barium gulp, iodine push CT Scan found the Crohn's and as I prepared for surgery with the surgeon they referred me to, my resident GP started studying up on Crohn's.

We don't have a car, so DR (hubby's nick) rides his bicycle as I ride mine when I'm able to get around. Needless to say, back then I could do nothing more than lay on the couch, in bed, or sit up at my computer. The net became my way out to the rest of the world, I only saw real life by looking out my window. By the time he worked all night and rode the bike 6 miles to get there and back, he was too tired to do housework and I wasn't able to. I don't even think rats would have wanted to live in our apartment. LOL. We had a path to get thru it basically. I was surrounded by all the things I needed the hours he was gone, so I didn't have to try to get up to get them and risk falling and hurting myself. I only got up to go potty and to go to the kitchen, the rest of my time I was at my puter or lying on the couch.

While I've never been a neat freak, I was totally embarassed by the inside of our place. I know exactly what you are feeling. I then came to the understanding that I was NOT going to make myself sicker, to please anyone else. They could either choose to ignore the mess made by having needed things around me or they didn't have to come inside. I didn't care which, I just didn't want to hear a word about it from them until they had walked in my shoes for awhile. (Well, by then I had the wheelchair, maybe I should say rolled on my wheels. LOL.)

You ex makes ME sick. What I would do is to not let him inside the house again. On the days he comes to get the kids, have them ready to walk out the door as soon as he arrives. If they aren't quite ready, he can wait on the porch until they are. That way his poor tummy won't get upset again by having to come inside your house, unless he comes in and cleans it for you. While that IS the thing he *should* be doing, I don't expect him to ever offer.

As you know I've had many more than one husband. They ALL were the same. They said I was lazy, I used 'I hurt' as an excuse to get out of doing things and when I'd double over and hit the floor from the gut pain I was faking it. It's very tempting some days to get copies of my medical files of the Crohn's Dx and send them a copy. I probably never will, but it sure is fun to think about. Like your's though, I wouldn't ever hear apology one for all the nasty things said and done to me by them I'm sure. One of them heard me say my gut was hurting one day and said 'I'll show you pain' and then proceeded to. What fun, then my gut and other body parts hurt when he was done.

Real friends who love you I learned will become apparent as time goes on. They are the ones that do try to understand that immuno diseases are an internal illness, not one that shows on the outside of the body in most cases, until the disease is at it's worst if even then. There is really nothing on the outside of our bodies that our immune systems can think don't belong, how silly would that be? LOL. It gets confused on our different body parts internally and thinks they are bad and goes on the attack, just like it's supposed to do to real bad things inside us. Just in our case it's attacking parts that aren't really bad and it ends up destroying our good parts. My favorite saying around here as I head towards the bathroom is: "I hate my guts ... and they hate me!"

Every time I eat, if I'm flaring, my immune system thinks that the food moving thru my guts is something bad and it attacks my bowels, mainly right at the end of the small where it connects to the large. Over time the scar tissue builds up from all the times of inflammation deep into the bowel walls and if the nasty meds don't stop the flare, the only choice left is to have surgery to remove the bad section of bowel. I've lost a little over a foot of my small bowel in 1999. I am going thru more tests now and may need to have more taken out. Time will tell on that one.

With MS your immune system thinks different body parts are bad and goes on the attack just like mine does. It can't be seen by others, but boy can we sure feel it. I wish I knew how to get your ex to understand how it all works, but I doubt he reads here to see what I've written and I don't feel he sounds like the type that would take the time to actually research the disease to see what it's doing to you in there.

Well sweet lady, welcome to the world of all things immuno. We are a special group of people and do our best to support each other.

Free, as you know, I also have an auto immune disease. Stress can be a major trigger for flares of any of the immuno diseases. While I can't make it go away, I can understand the good and bad days you will be learning to live with as your 'normal life'. I've found not everyone really understands 'I may look fine on the outside, but am very sick on the inside'. They equal looking good to feeling good. That is a normal thing and true for almost all people. Those of us with immuno diseases are the exceptions to that rule. I'd be more than happy to have a shoulder for you if it's needed and may borrow yours someday too if it has the room. :)

Please, if you ever want to talk to someone who's also there, get ahold of me. I have loved the times in chat with you and would hate to lose touch. I don't have your phone number, so will send you a PM with mine and my email addy, praying you check it before leaving for good so you have them. I have Yahoo IM too and can send you my nick in there, it's really the easiest way to reach me anyway cause if I'm awake, more than likely I'm online and IM will be turned on. I only leave the house on the days I feel I can handle it and they average once a week to every two weeks for anything further than a quick ride to the grocery store, when I run out of something.

I love ya lady. I hate drama as much as you do and probably for a majority of the same reasons. Know you will be in my prayers. :)

If nothing posted has 'hit the spot' for you yet, you could always go a little further and come out here to Phoenix and visit me. We were only 103 degrees today. Just think how nice it will be by the time school is out .. I'm thinking 115 to 120.

Lots of things to do out here, if you can figure out the magic formula to keep yourself from melting as you go from place to place around the city. LOL.

Seriously, all the places mentioned sound great. Wherever you decide to go, have a great time!!!

I HATED wooden spoons. Funny thing though, my house always seemed to be lacking them and I'd hate to do the math to see how much was spent (by others) to make sure I had some.

Then again, it could have been that one day I showed the kids how quickly our blue and gold macaw could bite thru a wooden spoon (one 300 lb. per sq. inch bite did the trick) and then the fun she had making toothpicks out of the spoon end of it. Naaaahhhh, *that* moment of (planned) amusement couldn't be the reason all the spoons kept getting fed to the bird as soon as they entered the house, via some caring Twit.

Grandma finally did figure out I was the one who taught them I think. She started to leave her spoon at home when she came over to visit, knowing if it was spotted by the kids, it wouldn't be going back home with her and there would be one very happy bird making toothpicks. :)

My kids, when they did something wrong, were very easy to correct. I simply sat down and talked to them and explained why whatever it was they did was not a good thing. They understood and wouldn't do it again. I didn't need a spoon, except for cooking their meals.

Now that they are grown, I have apologized to them for the few times I did use a spoon on them and they told me not to even think about it .. they know exactly where it came from and it was TWI, not Mom. I quickly found a way to never have spoons around to be used on them and we talked things out to get them settled.

For years I've been a member of ign.com where I find cheats, walkthrus, etc. for the games I buy. They have grown and have many divisions now and I heard about one that got my interest very quickly.

http://www.direct2drive.com/ Once you have an account with them, or if you already have one with any of the sites under the same umbrella, you can put the game (or games) you want in your cart, then go check out. They will keep your debit or credit card number on file inside your account so you don't have to type it all out each time, you only have to enter the security code (3 numers) on the back so they know it's really you.

I surfed the site once hearing about it while reading on ign.com and found 2 games I'd been wanting, but couldn't find locally because we don't have any stores near us that sell a lot of games. Target and WalMart have a very small selection. Both of the games were the same price I'd pay at a store for them, except there is no tax added on due to it being an online, download purchase.

Once your card goes thru, they send you email and then you can go in, log into your account, go into your personal account section and you will see the game or games you purchased waiting for you to download them. There is also an activation number there that you will need to make them run. Just like with a game bought at a real store! You may burn a copy to CD for backup should you wish (make sure to keep a copy of the activation number too), but once you buy a game from them, you can go back into your account at any time and redownload the games again. Each time you do that, you will get a new activation number, for your safety and theirs.

There are slight differences between a purchased game CD at a store and a digitalized game you download. Patches you have to get from Driect2Drive, as they are made a little differently for some digitalized games. They do their best to get patches on their site, in a patch section, just as quickly as you will find them on a game's maker's website for a CD game from a store. Any games you downlaod will already have all the latest patches already on them. You would only have to go check for patches if more would be released after you downloaded the game from Direct2Drive.

Am I impressed? VERY. I got 2 games I'd wanted for a couple months and couldn't find locally, at a great price and I was playing them a couple hours after buying them. (I was getting 520. KB download speeds on cable for the geeks reading this.) The 2nd game I bought was almost 3 gigs in size and it took 1 hour and 15 minutes to download it. Setup is the same as with any game and after that I was playing the game. It was nice to sit here last night in my bathrobe and get the games. LOL, couldn't go to a store dressed like that!

I wanted to pass this site along to all the gamers here. If you don't mind the concept of a direct download to your drive instead of an install from CD, then check this site out. They have a nice selection and even a budget area of older games all selling for under 20 bucks. (Although I did see some 10 buck games not in that section in other ones, so I'm assuming that is the normal price and those games won't be moved into the discount area until they are older.)

They have very clear directions for you to read (and please do read them), so you will have a flawless download and can be playing your new game in a very short time. For those that hate going to the store and looking thru racks of CD/DVD cases, go surf this site and enjoy the games you find and purchase.

http://www.snopes.com/medical/toxins/cfl.asp

It's not true folks. Go here to read the truth and the recommended way to clean up a bulb if broken.

Before my ex roommate left, he broke quite a few of these bulbs around the apartment during his temper tantrum. I picked up the glass and the windows were cracked to let smoke out and fresh air in, so I basically did what they say to do without knowing it. I didn't vacuum the rug till a couple weeks later, so I feel that time period passed was enough that it was safe to use the vacuum there again, but they say not to use one right away. (Glad I was busy with other things and didn't get around to it till I did!)

I only have one of these bulbs left in the apartment that I do use in a reading lamp that can't handle the higher watt light bulbs so I get a brighter light. When the bulb goes, the light will too I think and I will buy a better one to replace it so I don't have to mess with any breaking again. That lamp is old and ugly anyway, this gives me a good reason to get rid of it. LOL.

Well, I just couldn't do it. Every time I picked up the phone to call John, the tears would start again and I don't talk and cry well at the same time. I decided to wait, knowing John would probably be away from home with family, then email him this week.

I sent him an email this morning expressing my feelings and memories. I just returned home from a bike ride and had an email waiting.

John said Tom was mentally alert until the last few hours. John was there with Tom, he said John's name and recognized him. :) The whole family was at his bedside as he was passing away John told me and I'm sure that was a comfort beyond words, being surrounded by those you know love you the most.

RIP Tommy, I'll see you when I get there....save a nice comfy chair for me!

Heh, I never have my sound turned on, so had no idea Sudo had done that with the song. Once I saw David's post I figured out something was up and turned on my speakers, then came back in this thread. Ahhhh, the memories.

I remember many mornings at the ROA hearing that song being sung as I was crawling into my tent or bed (depending if we rented a camper or not). Always thought it was nice of them to play me some music to go to sleep to.

Admit it, ya gotta love us backwards 3rd shifters that think the sun coming up means it's time to go to bed. Well, at the ROA they didn't like it much when they saw me doing it and would try to order me around saying I should be going to a teaching or events going on thruout the morning. Told them 'yeah sure, I'll go, just as soon as I wake up later', yawned and pulled the covers up over my head. It got to where I almost looked forward to that every year when there. Hehehe .. they really didn't like us rebels who wouldn't take their 'advice' and did as we damn well pleased.

Then, can we all sing that great spiritual song "Inna Godda Davidda" (sp?) together??

In_a_gadda_da_vida is the correct spelling. Great song.

(Not that I have the full version in mp3 format or anything on my computer and it was real easy to go check the spelling. LOL!)