Re: Worn Thin

June 5, 2007

Alana,

I remember when I broke my leg 4 years ago I was on an emotional downward

spiral for quite a while. I'm sorry that it sucks for you right now. Living with

SMA can be exhausting and I sometimes wonder " is this as good as it gets " ? For

me the things that help me pull myself back on track include: family, friends,

pets, and Jesus. I also take an anti-depressant..... If you ever want to

chat/gripe/cry/spit.....please email me (on or off-list).

~a

Alana <alrt@...> wrote:

Gosh it'll be 5 years in February since I joined this group. I went

looking because I needed to talk with adults dealling with the same

disability crap I've been encountering. Betty Lou pointed me this

way...Thank you!

I find myself feeling as blue now as I did then. I keep getting

bacterial infections in my urinary tract. It seems endless. I had

kidney stones removed in January for the 2nd time, hoping it would be

the last time. Only 6 months later they seem to be back - I'll know

for sure when I have an ultrasound done.

I've done really well adapting to changes and the progression of my

disability over the years. Some of the most difficult transitions

were using a ventilator, having a supra pubic catheter placed, and

depending on I.V. for hydration. All this runs smoothly, now. But I

am really struggling with how to have a quality life when I'm made to

feel ill most of the time by an infection or the side-effects of the

medication to treat the infection. I'm not sick enough to stay in

bed all day, but don't feel well enough to do much more than fiddle

with the computer a lot of the time.

Looking for a light at the end of the tunnel. Would love to hear how

others cope with such situations.

Alana

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

Sick sense of humor? Visit TV's Comedy with an Edge to see what's on,

when.

June 6, 2007

Hey Alana,

There is one phrase I keep rolling around in my head that my mother used to

say to me whenever I was " blue " (for whatever reason): " You know kiddo, it

could be worse. "

Angie

On Tuesday 05 June 2007 23:50, a B. wrote:

> Alana,

>

> I remember when I broke my leg 4 years ago I was on an emotional downward

> spiral for quite a while. I'm sorry that it sucks for you right now. Living

> with SMA can be exhausting and I sometimes wonder " is this as good as it

> gets " ? For me the things that help me pull myself back on track include:

> family, friends, pets, and Jesus. I also take an anti-depressant..... If

> you ever want to chat/gripe/cry/spit.....please email me (on or off-list).

> ~a

>

> Alana <alrt@...> wrote:

> Gosh it'll be 5 years in February since I joined this group. I

> went looking because I needed to talk with adults dealling with the same

> disability crap I've been encountering. Betty Lou pointed me this

> way...Thank you!

>

> I find myself feeling as blue now as I did then. I keep getting

> bacterial infections in my urinary tract. It seems endless. I had

> kidney stones removed in January for the 2nd time, hoping it would be

> the last time. Only 6 months later they seem to be back - I'll know

> for sure when I have an ultrasound done.

>

> I've done really well adapting to changes and the progression of my

> disability over the years. Some of the most difficult transitions

> were using a ventilator, having a supra pubic catheter placed, and

> depending on I.V. for hydration. All this runs smoothly, now. But I

> am really struggling with how to have a quality life when I'm made to

> feel ill most of the time by an infection or the side-effects of the

> medication to treat the infection. I'm not sick enough to stay in

> bed all day, but don't feel well enough to do much more than fiddle

> with the computer a lot of the time.

>

> Looking for a light at the end of the tunnel. Would love to hear how

> others cope with such situations.

>

> Alana

>

> ---------------------------------

> Sick sense of humor? Visit TV's Comedy with an Edge to see what's

> on, when.

>

June 6, 2007

Hi, Alana

Do you get *infection stones* in your kidney?

I get stones in my left kidney ( not the right ). My Specialist said that they

could be caused by chronic infections. I started getting stones about 5 years

ago. The last ones had to be blown up. They don't take long to form.

June 6, 2007

A totally unhelpful statement to make to someone.

Angie wrote:

>

> Hey Alana,

>

> There is one phrase I keep rolling around in my head that my mother

> used to

> say to me whenever I was " blue " (for whatever reason): " You know

> kiddo, it

> could be worse. "

>

> Angie

>

> On Tuesday 05 June 2007 23:50, a B. wrote:

> > Alana,

> >

> > I remember when I broke my leg 4 years ago I was on an emotional

> downward

> > spiral for quite a while. I'm sorry that it sucks for you right now.

> Living

> > with SMA can be exhausting and I sometimes wonder " is this as good as it

> > gets " ? For me the things that help me pull myself back on track include:

> > family, friends, pets, and Jesus. I also take an anti-depressant..... If

> > you ever want to chat/gripe/cry/spit.....please email me (on or

> off-list).

> > ~a

> >

> > Alana <alrt@... <mailto:alrt%40comcast.net>> wrote:

> > Gosh it'll be 5 years in February since I joined this group. I

> > went looking because I needed to talk with adults dealling with the same

> > disability crap I've been encountering. Betty Lou pointed me this

> > way...Thank you!

> >

> > I find myself feeling as blue now as I did then. I keep getting

> > bacterial infections in my urinary tract. It seems endless. I had

> > kidney stones removed in January for the 2nd time, hoping it would be

> > the last time. Only 6 months later they seem to be back - I'll know

> > for sure when I have an ultrasound done.

> >

> > I've done really well adapting to changes and the progression of my

> > disability over the years. Some of the most difficult transitions

> > were using a ventilator, having a supra pubic catheter placed, and

> > depending on I.V. for hydration. All this runs smoothly, now. But I

> > am really struggling with how to have a quality life when I'm made to

> > feel ill most of the time by an infection or the side-effects of the

> > medication to treat the infection. I'm not sick enough to stay in

> > bed all day, but don't feel well enough to do much more than fiddle

> > with the computer a lot of the time.

> >

> > Looking for a light at the end of the tunnel. Would love to hear how

> > others cope with such situations.

> >

> > Alana

> >

> > ---------------------------------

> > Sick sense of humor? Visit TV's Comedy with an Edge to see what's

> > on, when.

> >

June 7, 2007

Alana

In the last 14 years I have had one major health problem after another ( broken

thigh bones, neurogenic bladder, atypical trigeminal neuralgia, chronic pain,

scoliosis, contractures, arthritis, 3 bouts of kidney stones, bladder

infections.......). On top of that my mother was diagnosed with Parkinson's ( we

lived together ) and later dementia. She passed away last Nov.

Sometimes I used to think what's next?

I don't know how many times during all this. I had people tell me to think

positively!! It was always people who had never been ill or in major pain. It

still makes me mad.

It's incredibly hard, tiring and depressing to go though one health problem

after another. Sometimes you think it's never going to end. All I can say is

when you do get an hour or day without pain or you feel not too bad, enjoy it as

best you can.

Take care

June 7, 2007

But it could be, such as remembering when you're sick or in a lot more

pain, or to add an " old " problem to the current situation would just be

enough to push you over the edge. Then of course remembering those who

are in a worse situation and have no one to talk to, encourage them or

help them.

>A totally unhelpful statement to make to someone.

Angie wrote:

>

> Hey Alana,

>

> There is one phrase I keep rolling around in my head that my mother

> used to

> say to me whenever I was " blue " (for whatever reason): " You know

> kiddo, it

> could be worse. "

>

> Angie

June 7, 2007

What you said is what happens for me. For example: I, like most of us, spent

a lot of time in and out of the hospitals with colds and would miss out on

fun, family or friend things as a kid. As such, I whined a lot and would cry

due to stress or boredom. This was when my mother would say this to me and

then add that crying won't help my cold cuz it makes more boogers. It was

never said in a mean way, more like a silly, nudge, nudge, wink, wink way

that made me giggle or smile. It also made me visualize how much worse I

could be if I didn't do what my mom said .... my kid mind would quickly paint

a better image and my tears or boredom would begin to fade.

As an adult, this way of viewing myself (NOT others) has enabled me to

appreciate my situation and swing me towards a more positive take.

My father also told me that our mind is a powerful tool. Use it wisely and

you can create what you want cuz if you don't it gets rusty. This is likely

why my imagination is so bizarre / creative. My physical side isn't as

strong as my mental side and yet I am contently active in my " world. "

To anyone who may be feeling blue or worn, just try and stay mentally

anchored.

Angie

On Thursday 07 June 2007 12:58, Lori K. Martz wrote:

> But it could be, such as remembering when you're sick or in a lot more

> pain, or to add an " old " problem to the current situation would just be

> enough to push you over the edge. Then of course remembering those who

> are in a worse situation and have no one to talk to, encourage them or

> help them.

>

> >A totally unhelpful statement to make to someone.

>

> Angie wrote:

> > Hey Alana,

> >

> > There is one phrase I keep rolling around in my head that my mother

> > used to

> > say to me whenever I was " blue " (for whatever reason): " You know

> > kiddo, it

> > could be worse. "

> >

> > Angie

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

June 7, 2007

In a message dated 6/7/2007 6:26:58 PM Eastern Daylight Time,

alrt@... writes:

On Monday I received the test results that I have yet another different

antibiotic-resistanantibiotic-resistan<WBR>t strain of staph colonizing my

3rd infection in 6 weeks. I started 14 days of I.V. Vancomyacin right

away. Yesterday afternoon I began to feel like it's beginning to

work. At least Vanco isn't as harsh as the I.V. Cipro I just finished.

Do they know why you keep getting these infections? I'm sorry, btw - I've

had recurrent UTIs, bladder infections and kidney issues in the past and they

make me feel AWFUL. Take care.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

************************************** See what's free at http://www.aol.com.

June 7, 2007

Well, fortunately people in my life know better than to say such an

insensitive thing to me. Anyone who knows me knows I'm quite

empathetic to other people's plights (that's why a do the work I do)

and I fully recognize how fortunate I am, even when I'm blue. Sorry

your mom wasn't able to give you the validation that it's okay to

feel blue no matter how many people are starving in Darfur.

Alana

>

> Hey Alana,

>

> There is one phrase I keep rolling around in my head that my mother

used to

> say to me whenever I was " blue " (for whatever reason): " You know

kiddo, it

> could be worse. "

>

> Angie

>

June 7, 2007

Ouch

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

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

From: [mailto: ] On

Behalf Of Alana

Sent: 07 June 2007 22:25

Subject: Re: Worn Thin

Well, fortunately people in my life know better than to say such an

insensitive thing to me. Anyone who knows me knows I'm quite

empathetic to other people's plights (that's why a do the work I do)

and I fully recognize how fortunate I am, even when I'm blue. Sorry

your mom wasn't able to give you the validation that it's okay to

feel blue no matter how many people are starving in Darfur.

Alana

>

> Hey Alana,

>

> There is one phrase I keep rolling around in my head that my mother

used to

> say to me whenever I was " blue " (for whatever reason): " You know

kiddo, it

> could be worse. "

>

> Angie

>

__________ NOD32 2317 (20070607) Information __________

This message was checked by NOD32 antivirus system.

http://www.eset.com

June 7, 2007

Thank you to the sweet folks who've e-mailed me here or off-list or

sent me instant messages encouraging me to hang in there and reminding

me that the blues eventually pass. As my body begins to heal, I'm

feeling a little bit better emotionally - Funny how that works. ;-)

On Monday I received the test results that I have yet another different

antibiotic-resistant strain of staph colonizing my urinary tract - The

3rd infection in 6 weeks. I started 14 days of I.V. Vancomyacin right

away. Yesterday afternoon I began to feel like it's beginning to

work. At least Vanco isn't as harsh as the I.V. Cipro I just finished.

To cope, I've cancelled most of my work obligations and have enrolled

in 2 classes that I'll enjoy and which seem doable. On Monday I start

a 3-week on-line class about the history and structure of Medicaid and

how to utilize it in different states to help people meet their

independent living goals. This formal training will be good. Most of

the advocacy work I do I learned by the skin of my teeth. On the 19th

I start a 6-week writing class at Berkeley City College. It's a 15-

minute walk from my home and meets Tuesday, Wednesday and Thursday

afternoons so I won't get cold walking to and from.

I was a creative writing major way back when. As I become more " gimpy "

and experience more frequent serious illness, I can't help but look at

my life in a bigger picture kind of way. One thing I've always enjoyed

is writing. Seems silly to keep putting it off; especially since I'm

not able to use the " I have to work " excuse at the moment.

I'm also reading and listening to talking books. Amy Tan's " The

Opposite of Fate " has been very encouraging to me as a writer. I'm

going to dive into some Buddhist meditation and readings about the

dharma as well. Life's too short to keep putting stuff off.

Cheers!

Alana

June 7, 2007

I disagree completely. Alana's quality of life has been dramatically

impacted by her health situation. She has spent most of her adult life

trying to improve the lives of persons with disabilities through her

advocacy work. She now needs some support herself. Telling her to

remember those worse off is bullsh*t.

Lori

Lori K. Martz wrote:

>

> But it could be, such as remembering when you're sick or in a lot more

> pain, or to add an " old " problem to the current situation would just be

> enough to push you over the edge. Then of course remembering those who

> are in a worse situation and have no one to talk to, encourage them or

> help them.

>

> >A totally unhelpful statement to make to someone.

>

> Angie wrote:

> >

> > Hey Alana,

> >

> > There is one phrase I keep rolling around in my head that my mother

> > used to

> > say to me whenever I was " blue " (for whatever reason): " You know

> > kiddo, it

> > could be worse. "

> >

> > Angie

>

June 7, 2007

Thank you, Amy. I remember you mentioning your struggles with this.

Indeed, it's not fun. I hope it's been better for you lately. Did

your pregnancies effect this at all?

All my life I've been more susceptible to urinary tract infections.

I've tried so many things. Pee after sex. Never use same wash cloth

twice. Wash my hands and " parts " well. Attendants use gloves.

Lover washes her/his hands and " parts " well. Take cranberry

tablets. No refined sugar. Acupuncture. Western herbs. Chinese

herbs. Homeopathy. Organic produce. No dairy. No alcohol. I

hoped that being able to drink more water after I got my catheter

would help. Echinacea tea...Blech...

For some reason my body creates kidney stones in my right kidney.

I've done extensive testing to determine if this is a chemical issue

that can be regulated with medication and diet...No such cause. I've

had 2 surgeries to remove the stones. They've grown back as quickly

as within 3 months. I've increased my hydration by adding I.V.

fluids to my daily regimen for the last year. It's pretty crazy. We

know that my osteoporosis is a contributing factor, but even that

shouldn't cause it so quickly.

I've been working with a wonderful infectious disease specialist for

about 5 years. We're just trying to keep me comfortable and healthy

enough to " have a life. " She said the combination of having foreign

objects - both the catheter AND the stones - gives a lot of places

for bacteria to colonize. Sigh.

So that's the long story. No real answers. I'm just doing the best

I can and am grateful that I have good health insurance and skilled

health care practitioners.

Thank you for asking.

Cheers!

Alana

>

> Do they know why you keep getting these infections? I'm sorry, btw -

I've

> had recurrent UTIs, bladder infections and kidney issues in the

past and they

> make me feel AWFUL. Take care.

>

June 7, 2007

Alana,

Let me first say that I don't have a clue if the following article would

apply to you in the least, but I'm throwing it in just in case.

Among other stuff, I take several things that I hope will help out my

bones, though they have never actually been pronounced as being in bad

shape -- just trying to forestall such a day.

At any rate, I do take:

Calcium citrate (supposed to be absorbed easier than many of the other

forms)

Magnesium (they need that, too)

Vitamin D (total about 600 IU, though lots of people are saying

1,000/day is better)

and Vitamin K (the way I always understood it, is that vitamin D got the

calcium into your system, but the vitamin K told it where it needed to

go in the body. I don't know if that's at all correct, but the following

article leads me to think it's not a bad idea to take the stuff.)

<http://www.newstarget.com/021884.html>

NewsTarget.com printable article

Originally published June 5 2007

Vitamin K reduces calcification of arteries by 37 percent;

blood thinner medications cause calcification

by Staff writer

A study has found vitamin K not only blocks new arterial calcium buildup

but can also reduce existing levels of calcification by 37 percent.

Researchers at Maastricht University published their findings in the

April 1st issue of Blood, the journal of the American Society of Hematology.

" Given that arterial calcifications are predictive of cardiovascular

events, regression of arterial calcification may help reduce the risk of

death in people with chronic kidney disease and coronary artery

disease, " wrote lead author Leon Schurgers.

Schurgers and his co-workers fed 10-week old male Wistar Kyoto rats a

diet containing the blood thinner warfarin to induce calcium buildup.

The animals were then separated into four groups: the first group was

given warfarin, and the other three groups were taken off the drug. The

three groups of warfarin-free animals were given various doses of

Vitamin K. The researchers reported that, in the normal dose Vitamin K

group, arterial calcium levels continued to increase even after warfarin

administration ended.

" In contrast, " the researchers wrote, " high-vitamin K intake (both K1

and K2) not only blocked the progress of further calcium accumulation

but also lead to a greater than 37 percent reduction of previously

accumulated arterial calcium precipitates within six weeks. "

These findings are especially relevant for people who take

blood-thinning drugs, which are known to induce arterial calcification

by inactivating a protein called matrix GLA, or MGP, a potent inhibitor

of calcification. MGP requires vitamin K for activation.

" The medical community now recognizes that vitamin K-dependent MGP plays

an essential role in promoting cardiovascular health, " said Schurgers,

" Our study shows that in an animal model, vitamin K can actually regress

preformed calcifications. The health implications for humans are

significant. "

Vitamin K is found in many kinds of foods, including soybeans, olives,

and oils, as well as in dark green vegetables, such as broccoli, kale,

spinach and Brussels sprouts.

" What's interesting about this study is that researchers actually used a

common blood thinner drug in order to induce a calcium build up in the

arteries, " said Mike , author of The 7 Laws of Nutrition. " This

indicates quite clearly that medical researchers know the best way to

cause calcification of arteries is to dose the subject with blood

thinner drugs, " said. " At the same time, this potentially deadly

side effect is not being fully explained to patients who are taking

blood thinner drugs such as Coumadin. "

All content posted on this site is commentary or opinion and is

protected under Free Speech. Truth Publishing LLC takes sole

responsibility for all content. Truth Publishing sells no hard products

and earns no money from the recommendation of products. Newstarget.com

is presented for educational and commentary purposes only and should not

be construed as professional advice from any licensed practitioner.

Truth Publishing assumes no responsibility for the use or misuse of this

material. For the full terms of usage of this material, visit

www.NewsTarget.com/terms.shtml

Alana wrote on 06/07/07 20:22:

> For some reason my body creates kidney stones in my right kidney.

> I've done extensive testing to determine if this is a chemical issue

> that can be regulated with medication and diet...No such cause. I've

> had 2 surgeries to remove the stones. They've grown back as quickly

> as within 3 months. I've increased my hydration by adding I.V.

> fluids to my daily regimen for the last year. It's pretty crazy. We

> know that my osteoporosis is a contributing factor, but even that

> shouldn't cause it so quickly.

June 7, 2007

Some of them are " infection stones " according to my urologist. I'm

sorry you're dealing with this, too.

>

> Hi, Alana

>

> Do you get *infection stones* in your kidney?

>

> I get stones in my left kidney ( not the right ). My Specialist

said that they could be caused by chronic infections. I started getting

stones about 5 years ago. The last ones had to be blown up. They don't

take long to form.

>

June 7, 2007

Thank you, Jeff. My urologist doesn't want me to take calcium

supplements, but I'll re-examine the issue with him.

Alana

>

> Alana,

>

> Let me first say that I don't have a clue if the following article

would

> apply to you in the least, but I'm throwing it in just in case.

>

> Among other stuff, I take several things that I hope will help out

my

> bones, though they have never actually been pronounced as being in

bad

> shape -- just trying to forestall such a day.

>

> At any rate, I do take:

>

> Calcium citrate (supposed to be absorbed easier than many of the

other

> forms)

>

> Magnesium (they need that, too)

>

> Vitamin D (total about 600 IU, though lots of people are saying

> 1,000/day is better)

>

> and Vitamin K (the way I always understood it, is that vitamin D

got the

> calcium into your system, but the vitamin K told it where it needed

to

> go in the body. I don't know if that's at all correct, but the

following

> article leads me to think it's not a bad idea to take the stuff.)

>

> <http://www.newstarget.com/021884.html>

> NewsTarget.com printable article

> Originally published June 5 2007

>

> Vitamin K reduces calcification of arteries by 37 percent;

> blood thinner medications cause calcification

>

> by Staff writer

>

> A study has found vitamin K not only blocks new arterial calcium

buildup

> but can also reduce existing levels of calcification by 37 percent.

> Researchers at Maastricht University published their findings in

the

> April 1st issue of Blood, the journal of the American Society of

Hematology.

>

> " Given that arterial calcifications are predictive of

cardiovascular

> events, regression of arterial calcification may help reduce the

risk of

> death in people with chronic kidney disease and coronary artery

> disease, " wrote lead author Leon Schurgers.

>

> Schurgers and his co-workers fed 10-week old male Wistar Kyoto rats

a

> diet containing the blood thinner warfarin to induce calcium

buildup.

> The animals were then separated into four groups: the first group

was

> given warfarin, and the other three groups were taken off the drug.

The

> three groups of warfarin-free animals were given various doses of

> Vitamin K. The researchers reported that, in the normal dose

Vitamin K

> group, arterial calcium levels continued to increase even after

warfarin

> administration ended.

>

> " In contrast, " the researchers wrote, " high-vitamin K intake (both

K1

> and K2) not only blocked the progress of further calcium

accumulation

> but also lead to a greater than 37 percent reduction of previously

> accumulated arterial calcium precipitates within six weeks. "

>

> These findings are especially relevant for people who take

> blood-thinning drugs, which are known to induce arterial

calcification

> by inactivating a protein called matrix GLA, or MGP, a potent

inhibitor

> of calcification. MGP requires vitamin K for activation.

>

> " The medical community now recognizes that vitamin K-dependent MGP

plays

> an essential role in promoting cardiovascular health, " said

Schurgers,

> " Our study shows that in an animal model, vitamin K can actually

regress

> preformed calcifications. The health implications for humans are

> significant. "

>

> Vitamin K is found in many kinds of foods, including soybeans,

olives,

> and oils, as well as in dark green vegetables, such as broccoli,

kale,

> spinach and Brussels sprouts.

>

> " What's interesting about this study is that researchers actually

used a

> common blood thinner drug in order to induce a calcium build up in

the

> arteries, " said Mike , author of The 7 Laws of

Nutrition. " This

> indicates quite clearly that medical researchers know the best way

to

> cause calcification of arteries is to dose the subject with blood

> thinner drugs, " said. " At the same time, this potentially

deadly

> side effect is not being fully explained to patients who are taking

> blood thinner drugs such as Coumadin. "

>

> All content posted on this site is commentary or opinion and is

> protected under Free Speech. Truth Publishing LLC takes sole

> responsibility for all content. Truth Publishing sells no hard

products

> and earns no money from the recommendation of products.

Newstarget.com

> is presented for educational and commentary purposes only and

should not

> be construed as professional advice from any licensed practitioner.

> Truth Publishing assumes no responsibility for the use or misuse of

this

> material. For the full terms of usage of this material, visit

> www.NewsTarget.com/terms.shtml

>

> Alana wrote on 06/07/07 20:22:

>

> > For some reason my body creates kidney stones in my right

kidney.

> > I've done extensive testing to determine if this is a chemical

issue

> > that can be regulated with medication and diet...No such cause.

I've

> > had 2 surgeries to remove the stones. They've grown back as

quickly

> > as within 3 months. I've increased my hydration by adding I.V.

> > fluids to my daily regimen for the last year. It's pretty

crazy. We

> > know that my osteoporosis is a contributing factor, but even that

> > shouldn't cause it so quickly.

>

June 8, 2007

What about yogurt?

Angie

On Thursday 07 June 2007 21:22, Alana wrote:

> Thank you, Amy. I remember you mentioning your struggles with this.

> Indeed, it's not fun. I hope it's been better for you lately. Did

> your pregnancies effect this at all?

>

> All my life I've been more susceptible to urinary tract infections.

> I've tried so many things. Pee after sex. Never use same wash cloth

> twice. Wash my hands and " parts " well. Attendants use gloves.

> Lover washes her/his hands and " parts " well. Take cranberry

> tablets. No refined sugar. Acupuncture. Western herbs. Chinese

> herbs. Homeopathy. Organic produce. No dairy. No alcohol. I

> hoped that being able to drink more water after I got my catheter

> would help. Echinacea tea...Blech...

>

> For some reason my body creates kidney stones in my right kidney.

> I've done extensive testing to determine if this is a chemical issue

> that can be regulated with medication and diet...No such cause. I've

> had 2 surgeries to remove the stones. They've grown back as quickly

> as within 3 months. I've increased my hydration by adding I.V.

> fluids to my daily regimen for the last year. It's pretty crazy. We

> know that my osteoporosis is a contributing factor, but even that

> shouldn't cause it so quickly.

>

> I've been working with a wonderful infectious disease specialist for

> about 5 years. We're just trying to keep me comfortable and healthy

> enough to " have a life. " She said the combination of having foreign

> objects - both the catheter AND the stones - gives a lot of places

> for bacteria to colonize. Sigh.

>

> So that's the long story. No real answers. I'm just doing the best

> I can and am grateful that I have good health insurance and skilled

> health care practitioners.

>

> Thank you for asking.

>

> Cheers!

> Alana

>

> > Do they know why you keep getting these infections? I'm sorry, btw -

>

> I've

>

> > had recurrent UTIs, bladder infections and kidney issues in the

>

> past and they

>

> > make me feel AWFUL. Take care.

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

June 8, 2007

Okay folks .... calm down a tad eh?

For the eyes of everyone on this e-group:

Everyone has not been able to read my words without tainting them with their

own views or opinions. What I didn't expect was foul language or negative

responses regardless of intent. So let me assure everyone that every word I

wrote was written in a kind, sincere manner blended in with a wink and a

smile. I'd say a pat on the back too, but I can't reach that far

I was also told by a grief counsellor (when my father died from cancer)

to " Acknowledge, Analyze and take corrective Action " whenever I began to

feel " down/blue. "

Angie

PS - my little tidbit explaining how my mother responded to my " blueness " was

NOT to remember those who are worse off than me (which does not reflect who I

am), it was to remind myself that if I don't pay attention then I could be

worse off.

On Thursday 07 June 2007 19:10, Lori wrote:

> I disagree completely. Alana's quality of life has been dramatically

> impacted by her health situation. She has spent most of her adult life

> trying to improve the lives of persons with disabilities through her

> advocacy work. She now needs some support herself. Telling her to

> remember those worse off is bullsh*t.

>

> Lori

>

> Lori K. Martz wrote:

> > But it could be, such as remembering when you're sick or in a lot more

> > pain, or to add an " old " problem to the current situation would just be

> > enough to push you over the edge. Then of course remembering those who

> > are in a worse situation and have no one to talk to, encourage them or

> > help them.

> >

> > >A totally unhelpful statement to make to someone.

> >

> > Angie wrote:

> > > Hey Alana,

> > >

> > > There is one phrase I keep rolling around in my head that my mother

> > > used to

> > > say to me whenever I was " blue " (for whatever reason): " You know

> > > kiddo, it

> > > could be worse. "

> > >

> > > Angie

--

Angie

Please visit my favourite websites:

for Ford Model A enthusiast

http://www.recap.on.ca

a memorial website of my father

http://www.roybebee.ca

The Monarchs (50's & 60's band my Uncle plays in)

http://www.the-monarchs.ca

a chapter of Model A Owners of Canada Inc

http://www.trilliumchapter.ca

an electric wheelchair hockey league

http://www.cewha.ca

June 8, 2007

Yogurt adds probiotics to our systems in relatively small doses.

Probiotics don't kill antibiotic-resistant strains of staph and

pseudomonas. They only replenish the flora in our intestines after

antibiotics have killed everything off. I take probiotics regularly to

help my digestion.

>

> What about yogurt?

>

> Angie

>

June 8, 2007

By the way, you really don't understand what I'm dealing with. It's

okay that you don't, but your response about my request for support

have been pretty invalidating and condescending. Please stop.

>

> What about yogurt?

>

> Angie

>

June 8, 2007

In a message dated 6/7/2007 9:24:24 PM Eastern Daylight Time,

alrt@... writes:

Thank you, Amy. I remember you mentioning your struggles with this.

Indeed, it's not fun. I hope it's been better for you lately. Did

your pregnancies effect this at all?>>

Knocking on wood - I haven't had an infection in about 2.5 years. I didn't

get one with either pregnancy, thank gods, because that would've been

horrible. I know pregnancy puts a great strain on your kidneys, so I'm very

grateful

that they're still working! I do get an occasional stabbing in my right

kidney (where the stones were/are?) but the doctor recommended no further

testing

unless it becomes a problem.

All my life I've been more susceptible to urinary tract infections.

I've tried so many things. Pee after sex. Never use same wash cloth

twice. Wash my hands and " parts " well. Attendants use gloves.

Lover washes her/his hands and " parts " well. Take cranberry

tablets. No refined sugar. Acupuncture. Western herbs. Chinese

herbs. Homeopathy. Organic produce. No dairy. No alcohol. I

hoped that being able to drink more water after I got my catheter

would help. Echinacea tea...Blech.wo>>

Man, it sounds like you've done it all. Do you take baths?

For some reason my body creates kidney stones in my right kidney.

I've done extensive testing to determine if this is a chemical issue

that can be regulated with medication and diet...No such cause. I've

had 2 surgeries to remove the stones. They've grown back as quickly

as within 3 months. I've increased my hydration by adding I.V.

fluids to my daily regimen for the last year. It's pretty crazy. We

know that my osteoporosis is a contributing factor, but even that

shouldn't cause it so quickly.

I've been working with a wonderful infectious disease specialist for

about 5 years. We're just trying to keep me comfortable and healthy

enough to " have a life. " She said the combination of having foreign

objects - both the catheter AND the stones - gives a lot of places

for bacteria to colonize. Sigh.>>

You know, I wonder if scoliosis plays a factor. My right kidney is a lot

more squished than my left and the right one's the problem.

Anyway, I have no advice, but I do empathize. Stay strong, woman!

So that's the long story. No real answers. I'm just doing the best

I can and am grateful that I have good health insurance and skilled

health care practitioners.

Amy

Wife to Will 11/3/95

Mama to Olivia Isabelle 9/18/03

&

Phineas Maximilian 11/30/05

************************************** See what's free at http://www.aol.com.

June 8, 2007

Alana,

I'm so sorry you're going thru all this. I'm not sure I've ever figured out

a great coping skill to dealing w/the progression of SMA. I try to stay

positive but that's easier said than done. It was a little easier when I had

to constantly remind me of what I did have rather than not have. He's not

here now so I'm doing a horrible job at that especially when it seems

everything I did have is gone now. So I'm probably not the best person to give

advice right now. What I do know is that you are an inspiration to me, and I

don't mean that in a patronizing way. With all the shit you go thru, you still

try to help others and try to live life to the fullest. I could probably

learn so much more from you than I already have. I'm glad you are a part of

this group and try to keep your chin up. I really hope things take a turn for

the better. If you need anything, just ask.

Kimi

In a message dated 6/4/2007 5:57:20 P.M. Eastern Daylight Time,