kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Woke up feeling like a truck ran me over again last night. Only took one ketek yesterday. Took 100 mg of provigil. Ate dinner only. Was on my feet too much yesterday. Was around talking too much yesterday and movement and lights and sound.
But, the good news is I was able to go down the hill with my friend, Denise. Pick up the power chair and Nissan and see her Aunt again.
Able to watch a movie last night.
Able to drive the Nissan from big city to almost the turn off to my smaller city. Brain and body shut down on me. We parked the Nissan with power chair inside at a hotel and I rode the 60 miles back home with my friend.
We plan on going back today to pick up the NIssan and drive it to the DMV to get the paper work done.
Right now, I have over done things too much to really appreciate what my new life style will be like. What it will be like to be in the old Jazzy power chair again and to be able to get in a car and drive myself somewhere.
I do know the Nissan was very comfortable and easy to handle for me. I could become a low rider and set the steering wheel in my lap so my arms were supported by my legs while driving.
My friend made dinner for us last night and did the dishes too. Dinner was the best I had in a long time with fresh vegies and fruit.
My friend's dog was not herself this trip. Sure hope she is OK. I was too out of it myself to give her some attention. Rosie was too exhausted herself and just wanted to lie down and rest.
Hopefully, I will recover in a few days and be able to really enjoy and take in the great new changes in my life.
Also got to visit with grandson's a couple of days again. I took them for a ride in my little power chair. The older 5 year old drove it across the street as he was sitting on my lap.
We all went to feed the horse across the street. Then we went to the play area here at the apartments.
The younger one year old laughed as he went down the slide while on his dad's lap.
To be around the grandkids was the best medicine of all. Don't know how long they were here. Perhaps an hour. But, it was just right. I was worn out and did not know how much longer I could pretend I was normal.
It was good to have my friend here too. Wish I could be around her more. But, she lives more of a normal life and I have just recently learned that I need to pace myself with this to be able to do a ilttle each day instead of over doing it and then being down for several days.
Had some free samples of provigil that i have been taking the past few days to help me do more. Took 100 mg the past two days. Think I only took 50 mg the first day. Only have 3 pills left so will need to use them wisely.
Also took coffee, excedrin and tea to help me yesterday. Plan on doing that againg today.
Then rest and get back into the routine of things.
STill can't imagine the gift of a car. That is big for me. Turning 16 meant more to me than any other age because it give me the freedom to drive and the independence that goes along with it. I have really missed not being able to have that freedome and independence the past few years. I think I will do OK. I will take it easy and stay on the back roads for awhile.
And it will be a learning curve on just how much I can be on my feet.
I do know I got in the smaller power chair to take Rosie to toilet last night and really wished I had the old Jazzy instead. It is so much more comfortable and puts less stress on the body.
It will be so nice to be out and about in it again.
The Mobility Store manager called it junk. HE said something like he was sorry he hasn't really been able to show me what he can do. He first worked on the low end invacare chair when I first moved here. And now, the old Jazzy. He said they were both junk so he just did the best he could.
Have not been well enought to really check Jazzy out but looks like the larger tires are new, new wiring, and of course the new used controller and it appears the sit is sitting upright more.
I know I caught it while going under a cable once and bent it backwards. Looks like they bent it back.
Not sure that is good as it helped me be able to lean back more in the power chair as sitting upright is still a problem.
He still has the low end invacare chair in the store that he was trying to sale last time I was there....almost a year and 6 months ago. He said he just can't sale them.
He showed me the higher end invacare chair that he thought would be so much better for me. It supports the body, has a power seat that fully reclines and I can adjust the heighth.
But, I did not even ask how much it was. I know they are very expensive.
I tried to explain to him that my plan was to get better so I do longer needed a power chair at all.
I was on my feet while there and found it totally draining to try and take in what he was saying and to stand on my feet and try to talk.
I have got to learn to take better care of myself and not try and appear normal or to pretend to myself I am normal.
I am too exhausted to cry. But, I think once the exhaustion wears off, the tears of joy and relief will come from the thought of others helping me out big time with getting the power chair fixed and with all my friend Denise has done with just being such a good and compassionate and emotionally supportive friend and with donating her Nissan to me and so many other things.
12:30 pm Just got back from picking up the power chair and Nissan from down the hill. All went well except it was really hard on my health. Starting to feel more human now that I am lying here next to the computer.
The local tire store unloaded the power chair for me.
Denise took care of all the paper work at the DMV. And put the new license plate on.
She is on her way home now.
The power chair's back wheels are really wobbling now that it has new batteries and a new controller. It also is going twice as fast as it did with the old stuff in it...or at least it seems that way.
I will deal with the wobbling back wheels later. The manager at the Mobility store said I needed new forks and new back wheels.
Put my sun glasses on while at the DMV as I started tearing up a few times. Very embarassing to be my age and be crying over the ability to drive again and the gift of the car.
STayed off my feet more today so the pain is not as bad. Don't think I could have been on my feet much today successfully.
Also took provigil, drank a frap, took a couple of excedrin extra strength and took my am meds.
It is beautiful country out there. The drive up the hill and down the hill is very pretty. It just is a little too windy for me and the speed is too fast. The movement of things moving by is a little too much right now. Thought of closing my eyes but since I was behind the wheel didn't think that was a good idea.
It was sad seeing my friend go. I'll get some rest and then take my new car to the car wash and get gas and pretend I am a normal person.
Today is my younger daughter's birthday. I hope she has a good one.
My friend also just had the oil changed, the tires look good, she had the car checked out by her mechanic before she brought it to me and it was clean but the drive over got very windy and dirty on the road.
Today was easier on me than yesterday.
Hopefully, it will be an easier day for my friend too.
The dogs seemed to be back to normal today too. They were exhausted from yesterday too.
The rest of the day will be down time...hopefully. Then, I will take Rosie to the dog park via the car vs the power chair.
Tomorrow the housekeeper is coming. So, I will make out a list for her to today for her to get groceries for me tomorrow.
EAt and take my meds this afternoon. And get lots of water and P/arco tea down me hopefully.
Mouth is still ....probably thrush like...whatever thrush like is.
This all hasn't sunk in yet. But, I do know life is going to be a lot less uphill like now due to having old Jazzy working and having transportation.
Not sure if I will take nissan or take the jazzy and senior van to water therapy tomorrow.
I am scheduled to take the senior van.
The truth that this is all happening because of the kindness of others is still something that is mindboggling to me right now. Very cool. Brings tears to my eyes.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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stymielymie
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posted
that is great kathy, who got the car for you???? you know i could have gotten a car for you easier than this computer!!!!!!!!!!! i think i talked to don and he had the chair fixed. is that true????? you should have your computer any day. had ups pack it special, may take all day to get out of box ,but it should be working. save box for 2 weeks just in case
love from lymenet and dave Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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kam
Honored Contributor (10K+ posts)
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posted
My friend Denise purchased a new HOnda Fit. She gave me her old 93 Nissan Pathfinder. IT has 200,000 miles on it but I have heard they will go to 300,000.
She liked her Nissan. It was just costing so much in gas going back and forth to work.
And gas just doesn't seem to be getting any cheaper.
Perhaps we should purchase stock in the oil companies as a group to raise funds for lyme disease causes. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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MagicAcorn
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posted
You go girl just put the peddle to the metal.
kam
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posted
LOL. That would be a good one to have on my power chair.
Trying this again. First time around I was almost done and got kicked off line.
Tried the dog park tonight via the car only.
Decided I would use the jazzy power chair tomorrow and the senior van with a lift to get me to water therapy.
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kam
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I'm jazzed. I just got back from taking the jazzy out to toilet Rosie. I was smiling and laughing. It feels so good to be in the Jazzy again.
It goes twice as fast as the indoor chair. And I do not need to be in the street. I can be on the sidewalk.
It is also so much more comfortable.
Rosie trots next to me instead of walking as she does in the smaller indoor chair. People pass us by who are walking when I take the indoor chair outdoors.
But, I do need to learn to drive it again. I forgot I needed to turn it down when going in the house, etc or moving around small places or in stores.
Amazing what things make me happy now!
Thank you. Thank you. Thank you.
I am looking forward to when I am more relaxed behind the wheel and can smile and laugh too because I have my own transportation again.
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5dana8
Frequent Contributor (1K+ posts)
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posted
Kam yeah!
Wheels
Enjoy the ride & much sunshine & happiness
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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trueblue
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posted
vroom, vroom...
Go Kam!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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kam
Honored Contributor (10K+ posts)
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posted
Now, I can head over to the health food store and get more Pau d/arco tea and vitamin C.
And I can head up the hill and watch the planes land and take off again. It is beautiful up there.
IF I am up to it, I can go in the restaurant and have a cup of coffee while I watch. If not, there is an area that I can sit and watch outside.
I wonder if the fire equipment for the summer has arrived. Last year, it was a big ta do. They were expecting a lot of forrest fires.
Not much I can do these days, but I can get in the power chair and go for short rides outdoors.
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Geneal
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posted
Oh Kam,
I am so happy for you!!!
I know this is the start of several good things for you.
Still praying for your disability to be approved.
Check your Pm from me.
Hugs,
Geneal
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hopeful123
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i'm so excited for you! this is very good news! you deserve the best.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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kam
Honored Contributor (10K+ posts)
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I have just been taking the pathfinder to and from the dog park alternating between the jazzy and the pathfinder.
If it is nice out, I take the jazzy. If it is freezing out or looks like rain...I take the pathifinder.
So nice to have a choice.
The speed limit is 25 on the road I take and there isn't any cross traffic so I am building back my confidence in driving.
Yesterday, I got in the jazzy to head out the door and discovered it had a flat.
I had completely forgotten the wheels needed to be repaired on it. The Mobility store did too obviously. They were in a hurry to try and fix the controller.
I learned it had a 10 year old controller in it.
They put in a controller from 2001.
They also put what looks like new wiring ...have i mentioned this all ready?
Any way. I woke up this am and remembered there was a guy in town who just became a certified Jazzy repair man.
I think he can handle the flat tire situation.
IF he can't, I think he is connected enough in the community to know which person to take it too.
And he will come to the house. It is very difficult to move the jazzy when it has a flat.
It is more than a matter of putting air in the tire or slime..been there...did that before it went down the hill.
CAlled the mobility store yesterday and they said to bring it down the hill for repairs if the tire doesn't hold air.
That is a big task and would most likely take $100 worth of gas. Just don't even know if that would be wise for me right now if I was able to do that...both driving wise and cash wise.
A good used tire for the jazzy is only about $20 so I will do what I can from here.
The bottom line is I am so surprised how having the jazzy up and running affects me emotionally.
I am so sad now that I can't use it again. Getting it fixed is going to be top on my list...especially since I do not think it will cost much this time.
It affects me physically too of course.
[ 24. April 2007, 12:04 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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Not that I expect anything to happen to me, but we have all read about lyme patients being OK and then not OK....
If anything does happen to me, I would like the indoor power chair and the outdoor power chair to go to other lyme patients.
I will try and get something in writing. As I know my parents will take the easy way out and probably just give them to the local used power chair guy.
HE is not a good guy. I would rather they went to lyme patients.
I will post also on the AZ lyme yahoo group so they will know they need to come and get them right away if I kick the bucket.
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just don
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posted
Can - do - Kam,
Thew only kicking you are going to be doing is---
KICKING this disease to the curb and
soaring with the eagles again!!
Running and dancing in the wind.
Maybe even be on that show , dancing with the stars,,,your our star!!!
Do tell us what size tires are on your "GO" cart??? Are they common bike or motor cycle tires??
Are you able to 'blow' up the tire yourself?? Have the items to do that?? How long does it stay up???
Do tell us about your "WHEELS""???
Its a rainy day here,,,so need something to 'think' about!!
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
Honored Contributor (10K+ posts)
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posted
Don,
My brain is a blank right now when it comes to the next step on what to do about the tires.
It would be great to have someone from the lyme community on dancing with the stars to represent lyme disease.
I wonder how Amy Tan is with dancing? I know she can snow ski.
It is a stretch...but it would be so much fun watching her give it a try.
Thanks for those encouraging words. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
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posted
Pathfinder would not start today while at dog park. A guy gave Rosie and I a ride home.
Hoping it will start tomorrow. It was running on empty. WE put 2 gallons of gas in it but it still would not start.
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kam
Honored Contributor (10K+ posts)
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Still will not start. I guess it does not like the name nissy or was it nessy?
I'll have to find out what Denise called it.
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kam
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posted
Talked to local medical supply place. They gave me two numbers to call regarding getting the tires fixed on the Jazzy.
They said they thought the guys come up here from the valley. This would be good.
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kam
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posted
A guy at the dog park told me about a mechanic in town that was able to figure out why his new engine would not start...after he had paid other mechanics over $1,000.
It was a simple thing.
so, I contacted this guy today and am planning on having AAA tow it to his shop. He said he would just charge me $42 for a half of hours work.
He is going to connect it to the computer in his shop.
I got brave enough to see what the place that my car is at now was going to charge me to look at it.
I was informed there was no charge. This is good.
They do not have a computer to connect to in order to see what is wrong They fwere gguessing it needed a new computer.
The new mechanic said it is rare that it is the computer. So, there is still hope.
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kam
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What is strange is that my brain is working now and then to deal with all that is going on right now.
It is hurting and feels swollen and the vision is not good.
But, I am able to make the calls.
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kam
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Thew only kicking you are going to be doing is---
KICKING this disease to the curb and
soaring with the eagles again!!
Running and dancing in the wind.
I just got it. Wouldn't it be love a ly!
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Well Kam, my great wish for you is for you to have your computer, your Nissan and your power chair ALL WORKING GREAT AT THE SAME TIME so that you begin to just KNOW when you start to use one it will work fine.
I am SO happy for you. Wish I was closer (as within 30 miles) so I could share some meals and watch Rosie at the dog park with you. Since I'm not, I hope you will continue to let us know how everything is going.
I don't think I've ever heard the story of why you are out in the Arizona boondocks. I used to be in the TN boondocks but finally had to admit I needed to be closer to things.
Wherever you are, I hope you find reasons to smile today,
My love, Janet
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kam
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posted
Update:
Just got a call from second opinion mechanic. He has the car running. It is not the computer.
But, he called to get my permission to charge me more money. HA!
He said it is running rich and he would like to find out why. He thinks it will take about an hour on the diagnostic machine to test more things out.
This is new to me. Last time I had trouble with cars they were still pretty basic.
Then I went to cars that had good track records. All I had to do was routine maintenance on them.
So, there is still hope for the Pathfinder. Hoping it is an easy fix and it is a reliable car after this and the starting problem my friend has had with it for a long time is solved.
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kam
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Thanks Janet.
Arizona boondocks.
I kind of wonder what I was thinking too.
It is nice here though. And the air quality is one of the best in the world.
I thought I would be able to use Angel flight to get my my lyme doc.
But, it turns out I am not well enough yet to handle the flights. I tried twice and got very sick both times. Had to be grounded an hour into the flight last time.
The thermo's off of the hot desert floor are very turbulent...didn't even consider this.
I just thought..perhaps if I headed north to my lyme doc's office near SF it might work vs crossing the desert and heading west.
I'll have to check with Angel Flight on this one.
I had been heading towards his other office.
I am kind of setting myself up to move if need be though. We shall see. It will be awhile.
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kam
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I LEARNED THAT IF I LEAN FORWARD WHILE IN THE JAZZY, I DO NOT ROCK AND ROLL SO MUCH.
THE JAZZY IS STILL ROCKING AND ROLLING BUT MY BODY IS NOT AS AFFECTED BY IT.
THIS IS GOOD.
I STILL NEED TO GET THE TIRES FIXED. BUT IT IS GOOD TO KNOW I CAN GET AROUND IN IT THE WAY IT IS NOW.
AT LEAST MY BACK WAS STRONG ENOUGH TO HOLD ME UP THIS AM. WE SHALL SEE IF THAT CONTINUES. I AM USUALLY TOO WEAK.
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kam
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The guy who came to fix the flat came back and fixed the rocking. something to do with something he did when fixing the flat on the Jazzy.
Hurray!
Another yahoo!
I got the Nissan Pathfinder back this am. My friend who gave it to me paid for the repairs.
I was feeling pretty spiffy so I got in the car and took my first trip to the gas station and car wash.
This meant I would need to drive down both main streets in town.
I did well. But, the car wash guy pushed the wrong button the first time so he said to come around and go through the car wash again.
Next time I will close my eyes when going through the car wash. The movement of the brushes and stuff was too much. Of course, my lyme brain did not think of closing my eyes until after the fact.
I just knew I did not feel well afterwards and wasn't so sure I wanted to go through again.
They do not have a car wash to clean the inside...just the outside...but that is OK.
I thought the car had a 10 gallon tank but I learned differently.
I stopped putting in gas when I noticed the bill was $50.
I was watching the gallons and not the price...lyme brain...can't do two things at once.
I am assuming it has a 15 gallon tank.
Trying to recall the last time I drove or had my own car.
Do recall I went from CA to AZ and back and it only cost me $50 so it must have been quite a while ago. HA!
I also had a Toyota that got really good gas mileage at that time and was new.
Had to let that go when lyme hit.
The trip to the gas station and getting the car wash was my limit this time around.
I am considering taking the pathfinder to water therapy instead of the senior van and my power chair this coming week.
It depends on how i am doing on the day of the therapy. I can park right in front of the building so I will not need to be on my feet long.
I just hope I have what it takes to do the exercises in the pool and walk in and out.
need harness for Rosie to help stabilize me on my rough moments.
We shall see.
Possible next trip with car will be to get the glass replaced on the side mirror.
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kam
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I also am thinking of taking the green lymeinfo ribbon I now have on my front door and adding it to the collection the guy at the car wash has.
Just need to get my strength up so I can drive back over there
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bettyg
Unregistered
posted
katherine, how much is gas where you are now?
locally it went to $ 3.09 in last 2 days; up 20 cents this week!
kam
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posted
Betty,
I think it is about the same here. I know it is over $3.00 a gallon. It was one of those things that my lyme brain saw and just couldn't compute.
Not much I could do about it. Needed gas.
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kam
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I just received an email from my friend who donated the car to me and it has a 20 gallon tank.
So, it is going to be over $60 to fill it.
I do not know what kind of mileage it gets yet.
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just don
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Kam,
At the rate YOU drive,,,that tank full should last a month,,,maybe two.
I would worry about gas getting old before you get it used. Or maybe evaporating before you burn it!!.
IF say $20 bucks worth of gas lasts you all month,then I would try to put that much in(after this time),,so you get a fresh supply every month. IF gas gets MUCH older than that it turns to varnish almost,hard on fuel systems!!
Do you need locking gas caps there to prevent that night time evaporation???
So did your gauge read full when you got the 50 bucks worth?? I have vehicles its 50 bucks each tank,,,times two tanks,,,drive around the block and fill again!!(almost)
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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kam
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Don,
It will be interesting to see how long a tank of gas lasts me.
I am going to try and drive to Flagstaff next month to catch AMtrak....so I am sure I will go through a tank on that trip.
But, around here....It is a learning curve. I am waiting to see if insurance will approve more water therapy sessions.
If they do, I am going to try and drive to water therapy twice a week.
If it is too much, I will go back to using the senior van so I can take the power chair.
I also would just like to drive around and look at where I live.
But, I need to wait until I have the strength to do this.
I know what you mean about it taking $100 to fill up and it not lasting long.
I have several friends in CA that are dealing with this.k
That is one reason why my friend gave me her car and purchased a economy car.
She is hoping that it will actually cost her less each month to make payments on a new car that gets better gas mileage.
I think she is right.
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kam
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This post will proably seem utterly ridiculous to some.
But, I just got back from driving through Taco Bell.
I kept the trip short again and it was time to get home when I did.
I saw the big speed bump in the parking lot before me and started to turn the car to go in between the island and the curb.
I then realized I was in the car and not my power chair and could not do that.
I was on my feet for a short time while I was out besides walking to and from the car.
I stopped at the glass shop to see what it would cost to replace the shattered glass on the passengers side.
It is the mirror you look into for cars in the lane you want to switch to..can't recall what that is called....side mirror?
the techs were not there but the lady holding down the fort told me she would call me tomorrow to let me know.
Hoping it will be a cheap and easy fix.
I like doing what use to be normal things that I just took for granted before lyme.
I think it is being on my feet that wears me out so much. Still trying to adjust to how to handle that one and how often.
Rosie helps me when I am on my feet. But, still need a hard harness for her instead of the soft harness I have now.
Anyway...first trip through taco bell or any fast food place in ? (4) amount of years.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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