Re:lighbulbs and scooters.

August 23, 2007

Hi Sandrea, yes, those twisted ones are fluorescents. If you don’t use your

kitchen lights, don’t worry about it. Not sure if recycling depots are up to

speed in safe disposal of these.

About scooters, I drive a little Celica, so I got a “micro-mini”. It does

fit into my trunk, but even at only 30 lbs per piece, it has become too

heavy (OK I’ve gotten too weak LOL) to maneuver it in and out of the car

(sigh). Also the seat is a little small. So, it has been a bit of a

disappointment.

Unfortunately, I am approved for funding for a full scooter, but they don’t

fund the van! They just say I should live in the city, so I can scoot from

my place. They say that about a lot of disability access issues <sigh>. But

the city is way too toxic and overstimulating for me. I also got a wee

portable “push chair” (doesn’t have the large self propel wheels) – if I

need help anyway, it’s easier. Cheers, Aylwin xox

August 25, 2007

Hi Aylwin,

What about a lift to lift your current scooter into your trunk? I've

seen those. Not a perfect solution but better than not being able to

use it at all. I don't know about where you live, but would it be worth

your while to have the full size scooter for use around where you live?

Like going for walks with your dog or whatever? I enjoy that with mine.

Another thought, if your car could tow a trailer, is to use the trailer

and drive the scooter right up onto it. It wouldn't be good for

inclement weather as these trailers are normally not enclosed, but it

would work otherwise. And often you can get those used for not a lot of

money. I don't know if you have any docs that would write something to

the system explaining your inability to live in the city to support

funding for some means of transporting the scooter. I think there are

also lifts which sit on a trailer hitch I believe that can be attached

to cars for transporting a scooter. Same deal weatherwise but perhaps

an option,

Sandrea

August 26, 2007

Morning Sandrea, I don't know if a lift would work, as this scooter actually

takes apart to go in the trunk, and also have light pieces. I used to be

able to handle the 30 lb parts, but no longer. I have seen a little lift

that attaches to the back of a sedan, which you just drive the scooter onto,

and then it lifts it a bit. The problem now is that I have a VERY rough

little steep driveway, which my little car just makes it up. I don't know

how I could manage a trailer. A covered, hitchable drive-on might work. But

I will check it out. Thanks for the ideas and thoughtfulness.

And no <sigh>, I don't know of any doc who would write a letter of support

for living in the country. Like yours, my GP doesn't really seem to

" believe " . or give a s***. And they will NOT fund a full sized scooter

unless I am living in a downtown apartment where you drive straight onto the

pavement. There is a big attitude here, it seems, that if you need

disability services/funding you should go and live where it is convenient -

for THEM! It's " cookie cutter care " , and if you don't fit nicely into their

little world you are just left hanging. I did get a doc's scrip for health

department services, they came, said yes I needed a scooter or chair, and no

they wouldn't approve a mini, but that they would TRY and get a Red Cross

loaner chair that would actually fit in my trunk (nothing about anyone to

push it!). This was last fall. And that's the last I ever heard from them.

<triple sigh>. TC, Aylwin xox

August 27, 2007

I have no idea about this Aylwin, but could a scooter go on your roof?

My mother had a wheelchair that had a lift that put it on the roof of

her car in a bin. I don't recall more than that. What I found with my

scooter is that the best source of information was a company that

actually did lifts full time. Initially I got a lift from the place I

got my scooter and it was a total lemon. I had it breaking all the time.

I got my money back and went to a company that only does lifts. They

were really knowledgeable and could tell me all about different

varieties of lifts etc. You'd have to find out the weight that your car

could support on top of it or whatever.

Sandrea

August 27, 2007

Hi Sandrea,

Alywin is in the same boat I am with our scooters. No car is made to

hold over 300lbs in the trunk (even if it would fit) and I can't

afford a trailer for it ...hell I'd be happy if I got a ramp built so

I could get outside again! I had purchased a ramp from the guy that

delivered the chair but it's more work to get the thing set up and

the chair out. Too heavy to place but not heavy enough to ride

down..go figger! There is a lil guy that everyone knows here in town

that rides around on his scooter/motorchair and he repairs them to

sell for cheap to those that don't have insurance. What a blessing

he is! He knows I need a trailer or sumthin so he said he would get

back to me.

Because of all the expenses with my meds and shelling out 3k before

my husbands insurance company would pay a dime on my RX's has put us

in debt with credit that we are trying to pay off so we have set our

groceries at 25.00 a week for the two of us. You can imagine my joy

today to make my first ever from scratch, devils food cake and

homemad chocolate frosting for my husband's sweet tooth! I did most

from the chair (thankful for my motorscooter) but am in bed now as I

can hardly move. It's not my husbands fault that we are in debt but

because of this DD! This too will pass as they say but I know Alywin

is like me, unable to afford those things. Oh and I priced them

too...thousands for those lifts but your suggestions are good ones!

Oh btw, the lil guy I spoke of told me he tried all ways imaginable

to get medicare to pay for some way of transport for our motorized

chairs and they say that " outside home use is a luxury! "

How are you doing lately anyway? You are always here to help anyone

with questions...but how are you doing? God Bless you and your time

you give to this forum!

Huggles!

>

> Hi Aylwin,

> What about a lift to lift your current scooter into your trunk?

I've

> seen those. Not a perfect solution but better than not being able

to

> use it at all. I don't know about where you live, but would it be

worth

> your while to have the full size scooter for use around where you

live?

> Like going for walks with your dog or whatever? I enjoy that with

mine.

August 28, 2007

Charlotte, thank you SO MUCH for being a dear and sourcing these out for me!

I totally will check it all out. TC, Aylwin xo

August 28, 2007

Hi Sandrea, well I drive a tiny ‘86 Celica, so I don’t know about having the

scooter on the roof, but thanks for all the other good tips! It sure is

frustrating for it to be sitting there gathering dust as I lurch myself into

oblivion. TC, Aylwin xox

August 30, 2007

Hi ,

Thanks for asking about me. Life has been really difficult for me of

late. My IBS has flared up seriously, my pain level increased, and my

fatigue level increased. I had a period from hell while my IBS was at

its worst. I found out I have asthma (it only took 8 months to

diagnosis this, no wonder it takes so long for CFS). I also found out I

have a very small nodule in my right lung. It is very likely nothing,

but given that I had thyroid cancer which spreads to the lungs I now

have to go through some tests by my endocrinologist to see if he sees

any thyroid tumor markers. The nodule is too small for the

pulmonologist to determine anything at this point, so I have another CT

scan in 3 months. Meanwhile I have done a 24 hour urine collection to

determine my iodine levels. If they are fine, then I go ahead with the

next step which is receiving 2 or more shots of something called

thyrogin, which causes my body to think I am not taking thyroid

replacement hormones. Then I get radioactive iodine and a body scan and

assorted blood tests before and after. So, once I start the shots I

think the whole testing thing is 5-8 days although some of these days

are just down time. If my iodine level is too high then I have to go on

a low iodine diet and keep doing 24 hours urines till it is at the

appropriate level. The good news is that the nodule is static (whatever

that means) and generally thyroid cancer metastases are not static. My

endocrinologist wants this done ASAP which concerns me. I asked why

the rush if he doesn't think it is cancer and was told because he cannot

be definite about it. Regardless of what he finds, I will still have to

go for CT scans for the next two years to be sure whatever it is doesn't

grow. Evidently there is no kind of cancer that doesn't grown within

two years and only then can it be ruled out completely.

So, while this has been going on my computer had to get fixed and one of

my dogs got sick on my rugs requiring the carpet cleaner to come twice

in one week. So there went $1000 that I don't have and had to go on a

charge card. My one cat that was attacked by my dog a number of weeks

ago is still traumatized and so we are trying to cope with that. I had

someone ready to move in with me from the Shared Living Option program I

am affiliated with and he backed out, which I had been really counting

on for income. I was talked to about another client that needed to be

moved from her current housing and had been a respite client of mine for

one week. In any case, I was not told that her current provider didn't

know about this and spoke to her at our monthly meeting to find out what

the issue was. Well, she hadn't been told and things got into an

emergency situation at that point and they had to remove the client to

an emergency placement at a group home until new housing is found for

her. I apologized profusely but don't know if I have burned my bridges

with the agency as they are in crisis mode right now. I called

Wednesday as they were supposed to know about a different client for me

but was told they are so busy with this emergency situation that

everything else is on hold.

Well, as you can imagine this is all very alarming and my depression has

flared to a scary point. I started seeing a new therapist a month or

two ago and recently was experiencing all sorts of dependency issues and

neediness that I haven't experienced in quite a long time and totally

freaked me out leading me to conclude I am a failure for needing to go

back into therapy. So, with that as a background and all of this then

happening I was very depressed. My new therapist is out of town this

week and I spoke to my former therapist in FL who I am very attached to.

She said that she was not at all surprised at these issues popping up

even though I had gotten over this with her several years ago. She

thinks it goes with starting over with someone new and is a phase that

will pass. I sure wish she had told me this might happen. In any case,

I told her I was feeling quite the failure, and she, never one to mince

words, said " what the hell is the matter with you " . I did laugh then

when she went on to say, now wasn't that a very good therapeutic

response. Anyway, she doesn't think I am going backwards and I have

been trying to come to terms with this just being a part of starting

with someone new. I also went to see my psychiatrist yesterday and told

him about the increased depression and anxiety and some suicidal stuff

and he increased the dose of one of my antidepressants to see if that

helps. And he will see me back in 2 weeks as opposed to 2 months which

feels better at the moment as he is keeping a closer eye on how I am

doing. In any case, I woke up this morning feeling a lot better which I

think has to do with talking to my therapist and assimilating what she

said and also with the knowledge that the increased meds should kick in

quite quickly.

Then I took a deep breath and called my father and told him my financial

situation. There is always a very high cost in asking my Dad for help

as there are all sorts of judgments involved etc. I told him that I can

no longer deal with living with two homes and waiting to know where I am

going to live, and that I would like to take my old house off the market

and move back there and just sell this one for what I can get. I had

lowered the price of this house as of this am. In any case, I told him

about my credit card bill and also that my property tax bill on my old

house came and I can't pay them. So, he gave me some assignments as far

as asking my realtor questions etc. So, I found out from my realtor and

mortgage broker that if someone were to make an offer, it is taking very

little time to get mortgages approved right now and there are plenty of

qualified buyers. My realtor said there will be no activity until after

labor day weekend is over, but that we should know about an interest in

this house within three weeks. I can lower the price once more without

going too low to pay off the mortgage and home equity loan. If the

house doesn't sell then will have to try to see if I can get renters for

this house that would cover the mortgage here, which is more than most

folks are asking for in rent right now. My Dad did agree to pay my

credit card bill this month and we are to talk about the taxes later on

as they aren't due till Oct.

So, too much is going on by far. My internist has also caused me a

great deal of heartache because I went to see her and it seems she is

very frustrated dealing with me and ordering tests and basically said

that I have been extensively tested and may not get answers to my

questions. She was not at all empathetic and was actually quite rude.

I got quite teary, which she saw but didn't say anything, and was crying

by the time I got to the building elevator. So, I am now on a waiting

list that may be 3 months or longer to get into a family practice guy

that is considered very good by my naturopath and a doctor in his office

(which is functional medicine based). That doc is not taking new

patients for time dollars which is how I pay at that office as they

don't take insurance.

In any case, I apologize for writing a book in response to your

question. Venting is helpful and having others know what is going on

also helps.

Sandrea

August 31, 2007

Hi Sandrea, oh you are going through too much by far. It seems ridiculous

sometimes how the medical complications and life stresses pile up on top of

each other. Too much, and voila! A reactivation of old “stuff”, depression

etc. At a low point last year I googled a suicide prevention site which had

the following wise words, which helped me a lot. (I’m paraphrasing…) – that

suicidal feelings arise when the stress of life overtake our resources to

deal with them. It helped for me to see things as just a situational

equation…and remember, all these things will pass, it’s just right now that

you have a client crisis, house and money issues, family dynamics raising

it’s ugly head and so on. Yes it’s a lot to deal with, and no medical

support doesn’t help either. Sadly it’s true what your internist says, you

may not get all the answers, but she could have been supportive about it.

Sometimes they take their failures out on us. Please take extra care right

now, sending hugs. Aylwin xox

August 31, 2007

-Bless your heart Sandrea,

You have been through alot of life changing things! I knew I had not

heard any updates about you but your always here for the rest of us!

It really makes me want to shake off this DD and come help you. I

mean that! I wish some of us lived close to at least one other in

this group. I can only imagine how your feeling right now with it

all. I sure hope the problems with two homes will remedy itself real

quick as that has been going on for a long time now. Nobody

including myself should have to fight this hard for some level of

living and have major financial woes on top of it!

We have no body to turn to for help...well, nobody that I would turn

to would be more exact. Your being alone must make it just that much

harder. You will have to keep us up to date on that spot they

found. I believe your a realist and not to mention very

intelligent. Your very important to me and to this group. Many of

us look to you for anything from Friendly support to information on

just about anything we are bouncing around.

You are at a tough time in your life where I'd feel like a rug had

been pulled out from under me. Your dealing with it all very well

but when you know better, you at least try and get help. I hope

changes in your meds will raise your mood to give you that fighting

strength. I rarely have bowel problems but used to have colitis and

as I look back, I was in a terrible marriage so I think stress played

a huge roll in that. It's important to try and keep your stressors

down and I will pray that things will start happening for you!

God Bless you and keep venting!

I just wish there was something I could actually DO

Love yah

-- In CFAlliance , " Sandrea Kornblum "

wrote:

>

> Hi ,

> Thanks for asking about me. Life has been really difficult for me

of

> late. My IBS has flared up seriously, my pain level increased, and

my

> fatigue level increased. I had a period from hell while my IBS was

at

> its worst. I found out I have asthma (it only took 8 months to

> diagnosis this, no wonder it takes so long for CFS). I also found

out I

> have a very small nodule in my right lung.

September 1, 2007

Thanks Aylwin,

I appreciate the support and I think that quote from the site is good

one. I think I will copy it and put it where I can see it.

Sandrea

September 2, 2007

Thanks so much for your kind supportive words . It really made

me feel good reading what you think of me. I am feeling really mad and

hurt and irritated at having to deal with these thyroid tests right now.

The reason being that my endocrinologist's nurse called Friday to say

that my iodine level is quite low, but they want me to do a low iodine

diet for two weeks. Evidently most folks have a higher iodine level and

have to do the diet longer and the urine collection deal until they are

low enough. I don't have to do the urine collection again. However the

diet they sent me is extremely restrictive. Nothing with salt that is

iodized which rules out everything that is already prepared as sea salt,

is seems is also iodized. Kosher salt is not. I will have to reread

it, but I think it said I could have only 5 oz of meat a day (chicken,

turkey, steak whatever) and 5 servings of grain type stuff (not rice) if

I make it myself. Evidently all store bought bread has iodized salt in

it. No soy or rice based products. Vegetables and fruit are okay, but

I can't eat hardly any veggies with my IBS. No dairy at all (which I

live on but would do a lot better without). I can't even buy chicken

and turkey at the grocery store as they are packed with salt in broth

for some reason. I have to go to the butcher to get meat that has

nothing added to it. So, I am feeling quite overwhelmed right now and

feeling sorry for myself for having to do this. My FL therapist asked

if it would just be worth waiting for the next scan in 3 months, and I

am going to ask the doctor's office about that. But should it be cancer

I know that it is better to treat early than late. At least I should

lose weight on this diet.

Sandrea

September 2, 2007