need to vent

August 2, 2002

noone can hold you to the surgery. your neuro needs to

refer you to help educate your decision. that is

proper protocal. tell him to refer you or you will

advance on your own. you can not be stopped from

seeing the surgeon and then hearing what he has to say

and deciding to wait. it is your body and your life.

besides that i know many people who dont like their

first nsg bedside manner and switches until the feel

comfortable. good luck

nicole

--- " s.holland2 " wrote:

> I seem to have problems posting from yahoo (my

> computer freezes up

> when I try) so I'm going to try this route..fingers

> crossed it works

> :-)

>

> I went to see my GP today to have a chat about the

> Chiari dx and get

> some advice about the pro's and cons of surgery in

> my case.

>

> I shouldn't have bothered, he was no help and ended

> up making me

> angry.

>

> He knows nothing about the condition and has never

> seen a patient with

> it. His advice re my questions was to speak to a

> neurosurgeon before

> making a decision........but the neurologist wants

> me to decide before

> he will refer me to a surgeon !!!!

>

> He then went on to offer me anti-depressants as in

> the dim and distant

> past I had suffered a couple of bouts of depression

> and people who are

> depressed imagine they have all these different

> problems....arrrggghhh.....what about the results of

> the MRI am I

> imagining them too ???

>

> He read part of the letter from the neurologist to

> me and basically he

> said.......the symptoms she is having may or may not

> be due to Chiari

> and she may or may not benefit from surgery the only

> way to find out

> is to perform the decompression....

>

> It all seems a bit uncertain to me, if we were

> talking about having my

> appendix out or similar I would probably say go for

> it but this is

> just a bit different.

>

> I am not depressed, I get a bit irritable and bad

> tempered sometimes,

> who doesn't when they don't feel well ? Yes my sleep

> is

> disrupted....hypoglycaemia and pseudo-hypoglycaemic

> attacks in the

> middle of the night tend to disrupt things.....Duh !

>

> So I'm feeling very angry right now :-(

> --

> Shirley

> see my cat pictures at

>

http://communities.msn.co.uk/Friendsfamilyandfelines2

>

> Shirley

> see my cat pictures at

>

http://communities.msn.co.uk/Friendsfamilyandfelines2

>

> Help section: http://www.yahoogroups.com/help/

>

> NOTE: NCC refers to posts with No Chiari Content

>

> To Unsubscribe Yourself:

> chiari-unsubscribe

>

> WACMA Home: Http://www.wacma.com

>

> WACMA Online Group:

> http://groups.yahoo.com/group/chiari/

>

November 25, 2008

Jon

I'm missing something that perhaps is just my oxygen deprivation, but

are you on oxygen? You're talking about the shortness on exertion and

most often with many of us thats just a need for a higher flow of

oxygen.

>

> I had *another* chest CT and a ton of lab on Friday past. Tomorrow

PFTs,

> which I hate...

>

> My pred taper ended last Thursday. By Sunday I was dyspneic on

> exertion..stairs kill me...

> so today I called my pulmodude and asked to be put on 20mg pred

daily...I

> felt so good

> on that dose...not too much, and was able to walk the dog and do a

little

> yard work.

>

> <rant mode>

> I have been an RN for almost 30 years <yikes, time fies> and I am

fully

> aware of the

> risk-benefit ratio of pred...but, dammit, I like to be comfortable!

> </rant mode>

>

> There. I feel better.

>

> Peace out,

> jon

> 50, ILD 10/08

> --

> Two wrongs don't make a right,

> but two 's make an airplane.

>

November 25, 2008

Oh what a wonderful word! "Pulmodude".

You made my day Jon.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

need to vent

I had *another* chest CT and a ton of lab on Friday past. Tomorrow PFTs, which I hate...My pred taper ended last Thursday. By Sunday I was dyspneic on exertion..stairs kill me...so today I called my pulmodude and asked to be put on 20mg pred daily...I felt so goodon that dose...not too much, and was able to walk the dog and do a little yard work.<rant mode>I have been an RN for almost 30 years <yikes, time fies> and I am fully aware of therisk-benefit ratio of pred...but, dammit, I like to be comfortable!</rant mode>There. I feel better.Peace out,jon50, ILD 10/08-- Two wrongs don't make a right,but two 's make an airplane.

November 25, 2008

No, I'm not on O2...yet. I'm sure hat will be discussed with me when I seehim in Dec.The opposite of a pulmodude is a pulmodudette.I'm imagining Brett (hi Brett) wearing a menorah....and find it

cool that he's happy his hair is coming back...heck, I shave myhead on purpose every day!jon-- Two wrongs don't make a right,but two 's make an airplane.

November 25, 2008

Jon ... I'm one step ahead of you... I figured out that pulmodudette was next!

Both hit my funny bone.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re: need to vent

No, I'm not on O2...yet. I'm sure hat will be discussed with me when I seehim in Dec.The opposite of a pulmodude is a pulmodudette.I'm imagining Brett (hi Brett) wearing a menorah....and find itcool that he's happy his hair is coming back...heck, I shave myhead on purpose every day!jon-- Two wrongs don't make a right,but two 's make an airplane.

November 25, 2008

Jon

I'm assuming you're not monitoring your saturation either with an

oximeter. If your sats were dropping to 87% before, I'm afraid I don't

understand why not oxygen at exertion then, at least for certain usages.

Are you confident in your pulmonologist's experience with PF? I know it

gets complicated with the combination of possible COPD and possible PF

and I would look toward a second opinion. Its good that the prednisone

is helping you feel better but under-oxygenation has serious other

consequences. Go armed in Dec with many questions. Would be great if you

could take information on your sats after steps and mowing and such.

>

> No, I'm not on O2...yet. I'm sure hat will be discussed with me when I

see

> him in Dec.

>

> The opposite of a pulmodude is a pulmodudette.

>

> I'm imagining Brett (hi Brett) wearing a menorah....and find it

> cool that he's happy his hair is coming back...heck, I shave my

> head on purpose every day!

>

> jon

> --

> Two wrongs don't make a right,

> but two 's make an airplane.

>

November 25, 2008

Here is a 02 alert for all. A fellow at my church was told his fibrosis was mild so he didn't use 02 except for sleep.. He is in the Hospital on dialyses. I talked to him several times . Breaks my heart. He is in he's 40's.USE 02 folks. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."

November 25, 2008

Peggy What are you saying, that he wasn’t

on o2 all the time so his kidneys failed ? Newbie bob York

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Peggy

Sent: Tuesday, November 25, 2008

2:15 PM

To: Breathe-Support

Subject: Re: Re:

need to vent

Here is a 02 alert for all. A fellow at my church was told his fibrosis

was mild so he didn't use 02 except for sleep.. He is in theHospitalondialyses.

I talked to him several times . Breaks my heart. He is in he's 40's.

USE 02 folks.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

" I

believe that friends are quiet angelswho lift us to our feet,

when our

wingshave trouble remembering how to fly. "

November 25, 2008

Jon , Hey I used to have my hair very long, then, went to short hair, then, with my treatmentswent to the shortest it has ever been since I was born, actually before that even ,I was born with hair so bald is really not my best look but I am going to keep it very short still so it doesn't catch fire from the menorah Brett No, I'm not on O2...yet. I'm sure hat will be discussed with me when I seehim in Dec.The opposite of a pulmodude is a pulmodudette.I'm imagining Brett (hi Brett) wearing a menorah....and find itcool that he's happy his hair is coming back...heck, I shave myhead on purpose every day!jon-- Two wrongs don't make a right,but two 's make an airplane. Brett Bowserbrett@...

November 25, 2008

Peggy

Good reminder...thats an organ it will take.

OXIMETER-IF YOU DON'T HAVE ONE, GET ONE.....

>

> Here is a 02 alert for all. A fellow at my church was told his

> fibrosis was mild so he didn't use 02 except for sleep.. He is in the

> Hospital on dialyses. I talked to him several times . Breaks my

> heart. He is in he's 40's.

>

> USE 02 folks.

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angels who lift us to our feet,

> when our wings have trouble remembering how to fly. "

>

> ï¿¼

>

November 25, 2008

Bob

The primary reason for supplemental oxygen is to protect other organs.

The heart and kidneys are those most easily damaged by low oxygen

saturation of your blood.

>

> Peggy What are you saying, that he wasn't on o2 all the time so his

kidneys

> failed ? Newbie bob York

>

> _____

>

> From: Breathe-Support

> [mailto:Breathe-Support ] On Behalf Of Peggy

> Sent: Tuesday, November 25, 2008 2:15 PM

> To: Breathe-Support

> Subject: Re: Re: need to vent

>

> Here is a 02 alert for all. A fellow at my church was told his

fibrosis was

> mild so he didn't use 02 except for sleep.. He is in

theHospitalondialyses.

> I talked to him several times . Breaks my heart. He is in he's 40's.

>

> USE 02 folks.

>

> Love & Prayers, Peggy

>

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angelswho lift us to our feet,

>

> when our wingshave trouble remembering how to fly. "

>

November 25, 2008

Yes Bob that is exactly the problem. He didn't have the cough, I didn't until this past year and it isn't as bad as some now. I told him about oximeters and 02 until I was blue in the face.. He has been very pale for tow months.. I think it is just so wrong for Doc' not to insist on 02 use for new patients if they are having a hard time breathing with activity.I honestly think you need a new one.. You need the 6 min. walk.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."

November 25, 2008

6 min walk wed next week thanks for the

push, Bob, York

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Peggy

Sent: Tuesday, November 25, 2008

3:11 PM

To: Breathe-Support

Subject: Re: Re:

need to vent

Yes Bob that is exactly the problem. He didn't have the cough, I didn't

until this past year and it isn't as bad as some now. I told him about

oximeters and 02 until I was blue in the face.. He has been very pale for tow

months.. I think it is just so wrong for Doc' not to insist on 02 use for new

patients if they are having a hard time breathing with activity.

I honestly think you need a new one.. You need the 6 min. walk..

Love & Prayers, Peggy

Florida, IPF/UIP 2004

" I

believe that friends are quiet angelswho lift us to our feet,

when our

wingshave trouble remembering how to fly. "

November 25, 2008

One more thing Bob, when you walk, walk at a good clip so your body will speak loud and clear.. They always tell you to walk at your own pace and some make ya walk slower that normal. The last one I did last March I think, I had to do it on room air... JOKE. every step I took it dropped I went down and really had a rough few min.. ALL THANKS TO MEDICARE..I had to qualify using their standards. I was on 8 L walking in there.. some things just amaze me. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."

November 25, 2008

Peggy

The person doing the oximeter on me for Medicare halted my 6 minute walk

in about 30 seconds as she had seen more than enough....lol

>

> One more thing Bob, when you walk, walk at a good clip so your body

> will speak loud and clear.. They always tell you to walk at your own

> pace and some make ya walk slower that normal. The last one I did

> last March I think, I had to do it on room air... JOKE. every step I

> took it dropped I went down and really had a rough few min.. ALL

> THANKS TO MEDICARE..

> I had to qualify using their standards. I was on 8 L walking in

> there.. some things just amaze me.

>

> Love & Prayers, Peggy

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angels who lift us to our feet,

> when our wings have trouble remembering how to fly. "

>

> ï¿¼

>

November 25, 2008

I think I made it about 30 seconds too. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."

November 25, 2008

>so it doesn't catch fire from the menorah Good. I hear that walking around with a menorah on your head does wonders

for your balance...tho in Israel walking with a menorah on your head is one ofthe field sobriety tests. I'll bet they catch a lot of people DWG...Driving WhileGentile. jonall verklempt

-- Two wrongs don't make a right,but two 's make an airplane.

November 25, 2008

Okay: MB, Peggy and all LOL

Keep the reminders going out on this.. Sometimes stubborness gets

the better of common sense or necessity..

Bob have been told through the years how importan the oxygen is and

how it does affect your other organs; BRAIN CELLS DO NOT

REGENERATE... patti, ipf, nj

>

> Peggy What are you saying, that he wasn't on o2 all the time so

his kidneys

> failed ? Newbie bob York

>

> _____

>

> From: Breathe-Support

> [mailto:Breathe-Support ] On Behalf Of Peggy

> Sent: Tuesday, November 25, 2008 2:15 PM

> To: Breathe-Support

> Subject: Re: Re: need to vent

>

> Here is a 02 alert for all. A fellow at my church was told his

fibrosis was

> mild so he didn't use 02 except for sleep.. He is in

theHospitalondialyses.

> I talked to him several times . Breaks my heart. He is in he's

40's.

>

> USE 02 folks.

>

> Love & Prayers, Peggy

>

> Florida, IPF/UIP 2004

>

> " I believe that friends are quiet angelswho lift us to our feet,

>

> when our wingshave trouble remembering how to fly. "

>

November 25, 2008

Bruce/oximeter

Just want to put it out there received the oximeter you spoke about.

The 65 dollar one and even with my raynauds so bad it works most of

the time, may have to warm my hands/fingers for a few.. But it does

work great. Thanks.. patti, IPF, NJ

> >

> > No, I'm not on O2...yet. I'm sure hat will be discussed with me

when I

> see

> > him in Dec.

> >

> > The opposite of a pulmodude is a pulmodudette.

> >

> > I'm imagining Brett (hi Brett) wearing a menorah....and find it

> > cool that he's happy his hair is coming back...heck, I shave my

> > head on purpose every day!

> >

> > jon

> > --

> > Two wrongs don't make a right,

> > but two 's make an airplane.

> >

>

November 25, 2008

Patti

Great to hear. I should get kickbacks from them or something (I don't so

don't worry), but I'm just so delighted that there are inexpensive

oximeters and, therefore, more people owning them. I have a blood

pressure machine and don't have blood pressure problems, but was advised

at my age a good idea. I have a thermometer. If I had diabetes I'd have

testing equipment and sometimes wonder if even the rest of us should be

checking our blood sugar more. But, I have other organs that I won't to

protect. My heart which so far is good. My kidneys which started off

bad.

Everything else we talk about may work for some and not for others, but

the need to maintain our saturation is universal. Of all the meds I

take, Oxygen is the most important by far.

> > >

> > > No, I'm not on O2...yet. I'm sure hat will be discussed with me

> when I

> > see

> > > him in Dec.

> > >

> > > The opposite of a pulmodude is a pulmodudette.

> > >

> > > I'm imagining Brett (hi Brett) wearing a menorah....and find it

> > > cool that he's happy his hair is coming back...heck, I shave my

> > > head on purpose every day!

> > >

> > > jon

> > > --

> > > Two wrongs don't make a right,

> > > but two 's make an airplane.

> > >

> >

>

April 30, 2012

Hi List,

I'm thankful my mom is still here, but every time I call her she acts like the

food police, and gets on my case.

I can't seem to have a normal conversation without her discussing my weight or

diabetes.

She doesn't remember some stuff from a long time ago.

I think she is getting althymers.

I just needed someone to talk to.

Becky

April 30, 2012

Hi Becky

you can write me off list if you wish, I'm going through something like that

with my grandmother

sugar

:

sugarsyl71@...

" I would rather walk with God in the dark

than go alone in the light. "

~Blessed, Sugar

need to vent

Hi List,

I'm thankful my mom is still here, but every time I call her she acts like the

food police, and gets on my case.

I can't seem to have a normal conversation without her discussing my weight or

diabetes.

She doesn't remember some stuff from a long time ago.

I think she is getting althymers.

I just needed someone to talk to.

Becky

April 30, 2012

Hi Sugar,

That would be good.

I don't know if I want to move to jersey near she and my brother or not.

I'd like to leave Nebraska.

Becky

need to vent

>

> Hi List,

> I'm thankful my mom is still here, but every time I call her she acts

> like the food police, and gets on my case.

> I can't seem to have a normal conversation without her discussing my

> weight or diabetes.

> She doesn't remember some stuff from a long time ago.

> I think she is getting althymers.

> I just needed someone to talk to.

> Becky

>

April 30, 2012

Becky, I " m no dear Abby or anything but I have been around a long

time, well, sort of. Why not try talking to other people about your

diabetes/food and when your mom starts, say thank you so much for caring

but I'm giving you a break right now and talking to other people right

now. I know it must bother tyou to the point where you may not want to

talk to her at all, but when she is gone, you may regret that. I'm not

trying to put you on a guilt trip, but my mom has been gone a long time

now and if I could have her back I'd probably do some things different.

I did not have diabetes when she was here, but we had our tough spots,

as we all do. I really am only trying to be helpful, not condemning.

Vicki Meizinger

April 30, 2012

Vicki

much credit to you hun, very nicely said