Re: Worn Thin

[Guest guest]

Amy,

I'm glad you've been infection-free. Knockin' on wood right along

side you. Yes, we generally are leaving my kidney stones alone

unless they of course cause an obstruction.

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

No, I haven't been able to get in a tub for 17 years.

> 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.

Funny my left kidney is the squished one, but my right kidney makes

the stones. Go figure.

Thank you for the encouragment. It's been quite an emotional

whirlwind of a week with some needed tears. In great contrast, today

I'm doing all the last minute preparations for Chuck's surprise 40th

birthday party tonight - Not easy to prepare for when you feel like

shit and have the blues. I finally ordered the cake yesterday -

eek! But I'm excited. Making tapas and denying myself the yummy

sangria. ;-)

Happy weekend!

Alana

[Guest guest]

Hi Kimi,

I can only imagine how hard it is without . He always really " got

it " which makes even really sucky situations a bit better. As for

coping skills, the one that keeps working for me is honoring my

feelings. I've been sad and felt alone, so instead of telling myself

to buck up and get over it, I told people I needed support. Sometimes

that's really hard to do - I hate feeling like a whiner. Funny how

it's usually easier to offer someone else empathy than it is to offer

it to ourselves. Many great people including you came through.

Taking 's advice, today's a better day and I'm enjoying it.

Sending you love...I'm often on if you wanna chat. 'althegrrl'

I know it's a huge loss not having there. Thinking of you...

Alana

[Guest guest]

I hope your son doesn't have to struggle with his respiratory

capacity going down, but it's probably good to plan for such things

since it's such a common SMA issue. I used to only use ventilation

at night, but my life transformed almost over night when I changed

that. For the last - wow - 18 years I use a ventilator with a small

mouthpiece mounted on the back of my wheelchair throughout the day.

My vital capacity stabilized. It's actually great! Suddenly I had

more energy, almost no colds, and I got my 1st full-time job! Three

months before, I thought I was dying.

To be honest this change and others were all emotionally and

logistically challenging. When I went on the daytime vent it really

helped me to talk with this older guy Herb who had post-polio. He'd

been on a vent for 20 years and was very sweet about my nervous

questions about being embarrassed about ventilator noise in a quiet

theater. My quad friend Suzie taught me how to change my supra pubic

catheter so I could teach my attendants. For the 1st three months I

was so overwhelmed by all the catheter care steps and remembering to

order supplies. I went through it all again adding I.V. meds and

hydration to my daily routine. Change is hard. But choosing these

changes were better than the alternative - dying. Changes take time

to adjust to, but I've made many ajustments and have a good quality

of life.

I use vent settings recommended by Dr. Bach. I really encourage you

to have your son's doctor study Dr. Bach's protocols. They don't

work for everyone and there are a few people on this list who do

really well having been trached, but generally it's good to try all

the options before traching unless it's a emergency.

All the best.

Alana

>

>

> Hi all. I hope you do not mind me asking a question that I am

struggling with related to my 11 year old son with SMA 1-2. The

pulomolgist is concerned that his respiratory reserves are reducing

and wants to discuss our thoughts on trach/vent if needed in the

future should his current BIAPAp support not be enough at some point.

I hear the pain and despair in some of your emails. It breaks my

heart that SMA is such a destroyer of precious lives. I feel

ambivalent about making major decisions with and for my son if the

respiratory decline becomes a present reality. How did you and your

families make decisions for yourself about how much technology

support to accept and at what point does it so interfere with quality

of life that you feel it has to be a no?  I am overwhelmed just

thinking about it all... Can you tell me about the declines you have

faced as older teens and adults?

>

>

>

> Thanks!

>

>

>

> Ronna

>

>

> Re: Worn Thin

>

>

>

>

>

>

>

>

> 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,

> alrt@... writes:

>

> 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

>

> ************************************** See what's free at

http://www.aol.com.

>

>

[Guest guest]

Alana,

Again, you have great valuable advice. It is so hard w/out and I've

been trying to hide my feelings. I just hate upsetting the people around me.

I don't want to ruin their day w/my probs. I've been really trying to see

the positive things in life right now, but it's just so hard. But like you

said, not validating my feelings is just creating other probs. It's getting

harder as time goes by instead of easier. I sometimes feel like everyone

thinks

I'm fine, when I'm far from it. It's my fault for not showing my emotions I

guess. I knew people would go on w/their lives and my life would never be

normal again. I just didn't realize how it would feel to see everyone else

get their " normal " back while I will never. Thanks for being there. I'm

rarely on . I have AIM, but if I'm around I'll try . I hope things

are

looking up for you too. How was the big birthday bash?

Kimi

In a message dated 6/9/2007 5:44:20 P.M. Eastern Daylight Time,

alrt@... writes:

Hi Kimi,

I can only imagine how hard it is without . He always really " got

it " which makes even really sucky situations a bit better. As for

coping skills, the one that keeps working for me is honoring my

feelings. I've been sad and felt alone, so instead of telling myself

to buck up and get over it, I told people I needed support. Sometimes

that's really hard to do - I hate feeling like a whiner. Funny how

it's usually easier to offer someone else empathy than it is to offer

it to ourselves. Many great people including you came through.

Taking 's advice, today's a better day and I'm enjoying it.

Sending you love...I'm often on if you wanna chat. 'althegrrl'

I know it's a huge loss not having there. Thinking of you...

Alana

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

[Guest guest]

Hey Kimi,

I'm sorta butting into the conversation here, but your email really resonated

with me, as far as dealing with emotions. I'm so bad at validating my own

feelings. When little things happen that are no big deal, I tend to be very

expressive and animated. But with the things that actually matter, I withdraw

emotionally and act like I'm fine. The more something bothers me, the less I

react. People think that means I'm strong and doing just fine, which I hate.

Nobody understands that when I'm acting fine or just being quiet, that's when I

REALLY need a friend and am dying to vent all my emotions to somebody. And then

it builds up and gets worse instead of better. I probably shouldn't expect

people to read my mind, but that seems to be what I do.

Just so you know, I still think about you and a lot. I loved your story,

and I hate how much it must hurt to be without him. Life can be so unfair.

Take care,

e

Re: Re: Worn Thin

Alana,

Again, you have great valuable advice. It is so hard w/out and I've

been trying to hide my feelings. I just hate upsetting the people around me.

I don't want to ruin their day w/my probs. I've been really trying to see

the positive things in life right now, but it's just so hard. But like you

said, not validating my feelings is just creating other probs. It's getting

harder as time goes by instead of easier. I sometimes feel like everyone

thinks

I'm fine, when I'm far from it. It's my fault for not showing my emotions I

guess. I knew people would go on w/their lives and my life would never be

normal again. I just didn't realize how it would feel to see everyone else

get their " normal " back while I will never. Thanks for being there. I'm

rarely on . I have AIM, but if I'm around I'll try . I hope things

are

looking up for you too. How was the big birthday bash?

Kimi

In a message dated 6/9/2007 5:44:20 P.M. Eastern Daylight Time,

alrt@... writes:

Hi Kimi,

I can only imagine how hard it is without . He always really " got

it " which makes even really sucky situations a bit better. As for

coping skills, the one that keeps working for me is honoring my

feelings. I've been sad and felt alone, so instead of telling myself

to buck up and get over it, I told people I needed support. Sometimes

that's really hard to do - I hate feeling like a whiner. Funny how

it's usually easier to offer someone else empathy than it is to offer

it to ourselves. Many great people including you came through.

Taking 's advice, today's a better day and I'm enjoying it.

Sending you love...I'm often on if you wanna chat. 'althegrrl'

I know it's a huge loss not having there. Thinking of you...

Alana

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

[Guest guest]

Hi Ronna,

My name is and I am 28 years old with SMA type I. I am married, I work

full-time, and I gave birth to a beautiful baby girl in April. Although I

struggled with pnemonias a lot when I was growing up, my Mom opted to not have

me trached and I thank her for that. At this time, I use a wheelchair full-time

and that is my only medical device. During my pregnancy, I had a c-flex which

didn't do much for me and I came home on Oxygen for awhile after my c-section to

help me recover.

For me, I never wanted anything that would make me look/feel more different then

I already did and my body learned, over time, how to sustain itself with its

capabilities. I was also blessed with a Mom who had a mouth on her and would

argue with anyone she could if she felt that my care was being compromised. As

I got older, I learned how to detect the signs of a cold moving into pneumonia

and have been very successful with treating them at home as soon as I let me

doctor know I need antibiotics. Since I graduated college in 2000, I've only

been hospitalized twice with pneumonia and those were very resistant strains

that came on over night.

If a trach for your son would improve his quality of life by letting him feel

better because of having better Oxygen, I would consider it. However, please

weigh all the pluses and minuses. I've known many pulmonologists that have

automatically wanted to trach me since I became an adult because my PFTs suck.

Well, they've always sucked but they maintain the same level. My body just

learned to function at that level and I am a very active person. Now, if it

ever got to the point that a trach would improve my life because of getting

constant pneumonia's or something, I would consider it.

Take care!

Milinovich

SMA Type I

Wife to , Mommy to - 9 Weeks Old!

Re: Worn Thin

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,

alrtcomcast (DOT) net writes:

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

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

com.

[Guest guest]

I am exactly like this too. I have a secret (shhh...don't tell) fear

that if I actually let myself feel the bad stuff and start crying, I'll

never stop (crying). I couldn't even grieve with (when he needed

me) when one of our cats died.

Lori

PurplGurl3@... wrote:

>

> Hey Kimi,

> ...I'm so bad at validating my own feelings. .... But with the things

> that actually matter, I withdraw emotionally and act like I'm fine.

> The more something bothers me, the less I react.

>

> Take care,

> e

>

[Guest guest]

e,

Thanks for thinking about me. We sound a like. I can be a huge drama queen

when it comes to stupid stuff. Everyone keeps saying how strong I am, when

I think, " if you only really knew. " I know I shouldn't expect people to read

my mind, but sometimes I think how can they think I'm actually fine?

I'm glad you liked our story. It was a pretty funny one I guess. But you

are right, life is so unfair.

Kimi

In a message dated 6/12/2007 11:59:17 P.M. Eastern Daylight Time,

PurplGurl3@... writes:

Hey Kimi,

I'm sorta butting into the conversation here, but your email really

resonated with me, as far as dealing with emotions. I'm so bad at validating my

own

feelings. When little things happen that are no big deal, I tend to be very

expressive and animated. But with the things that actually matter, I withdraw

emotionally and act like I'm fine. The more something bothers me, the less I

react. People think that means I'm strong and doing just fine, which I hate.

Nobody understands that when I'm acting fine or just being quiet, that's when

I REALLY need a friend and am dying to vent all my emotions to somebody. And

then it builds up and gets worse instead of better. I probably shouldn't

expect people to read my mind, but that seems to be what I do.

Just so you know, I still think about you and a lot. I loved your

story, and I hate how much it must hurt to be without him. Life can be so

unfair.

Take care,

e

-----Original Message-----

From: _Ksmile96@..._ (mailto:Ksmile96@...)

_@groSMAfrie_ (mailto: )

Sent: Mon, 11 Jun 2007 2:52 pm

Subject: Re: Re: Worn Thin

Alana,

Again, you have great valuable advice. It is so hard w/out and I've

been trying to hide my feelings. I just hate upsetting the people around me.

I don't want to ruin their day w/my probs. I've been really trying to see

the positive things in life right now, but it's just so hard. But like you

said, not validating my feelings is just creating other probs. It's getting

harder as time goes by instead of easier. I sometimes feel like everyone

thinks

I'm fine, when I'm far from it. It's my fault for not showing my emotions I

guess. I knew people would go on w/their lives and my life would never be

normal again. I just didn't realize how it would feel to see everyone else

get their " normal " back while I will never. Thanks for being there. I'm

rarely on . I have AIM, but if I'm around I'll try . I hope things

are

looking up for you too. How was the big birthday bash?

Kimi

In a message dated 6/9/2007 5:44:20 P.M. Eastern Daylight Time,

_alrt@..._ (mailto:alrt@...) writes:

Hi Kimi,

I can only imagine how hard it is without . He always really " got

it " which makes even really sucky situations a bit better. As for

coping skills, the one that keeps working for me is honoring my

feelings. I've been sad and felt alone, so instead of telling myself

to buck up and get over it, I told people I needed support. Sometimes

that's really hard to do - I hate feeling like a whiner. Funny how

it's usually easier to offer someone else empathy than it is to offer

it to ourselves. Many great people including you came through.

Taking 's advice, today's a better day and I'm enjoying it.

Sending you love...I'm often on if you wanna chat. 'althegrrl'

I know it's a huge loss not having there. Thinking of you...

Alana

******************************************<WBR>*********<WBR>*_http://www.aol.

http_ (http://www.aol.com./)

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