Re: (unknown)

[Guest guest]

... Thank you for bringing that to ...LOL..... my attention. I'm

sure the kitties wouldn't grow up proper going to the Human Society....

LOL

You guys crack me up......

[Guest guest]

Hi

Headache is still with me. It's always on my left side of my head and

my left eye is blurry. Both eye's are very lazy today. I know the

myositis is in my eyes so this to will pass. What bothers me the most

is that when I have these headaches, even laying my head on the pillow

or just propping my head up and laying the backside of my head on the

pillow....causes more pain. If I don't have my head touching anything,

I do much better.

I went last Thursday for my pulmonary testing. My testing on 2-3-00

were as follows: MEP: 11 and MIP RV -15

The testing on 09-07-00 were:

MEP: 25 and MIP RV 29

I seem to have more strength in my lung muscles. She (my doctor) was

just thrilled with the testing. We'll take another test in Dec. and

hopefully it will be better. They aren't sure if this will be lasting

or it's going to be also a roller coaster ride. We'll see how it goes.

But for now I'll stay on the Enbrel....especially since it's helping my

lungs to function better.

.... I'm the same as you... I'm not one for taking medicine...in

fact I hate it. I would only take my pain meds when I needed them...

not a smart thing to do. Now I take them in the morning and at night.

It has worked out much better and I don't go through the ups and downs

with more pain like I use to.

I also continue to walk because I don't want the only muscles left to

waste away but I have to say that I feel horrible afterwards. In order

for me to go to the doctors I have to stay down at least 4 days. I

don't do any walking on those days. By Thursday night I was so fatigued

that I came home and went right to bed. I slept off and on the next

day...terrible headache, eyes burning, blurry vision, upset stomach,

weak legs, pain in the arms, back and legs, and I wanted complete quiet

so it wouldn't hurt my ears.

As for the testing in the office.... My doctors also do the same

testing. I'm rated a 5.... One month it's a 3.5 and the next it might

be a 6.5... each time is very different. The doctors have told me this

test is just something that they go by but it really means nothing as

far as how the patient is really doing. I bounce around so much.

I use to have the same thing with my head tipping it back. It has

gotten better but I still have days where I can't tip it back nor side

to side. Of course I also have osteoarthritis in my neck as well so

this might be due to that disease.

I think our bodies get use to some meds making them less

effective...this might be the case with the Ambien. It might be time

to try something else. I know I sure feel much better the next day when

I get a full, deep sleep.

Hope everyone is having a great day.

Vicki-pm

[Guest guest]

>

> Hi

>

> Headache is still with me. It's always on my left side of my head

and

> my left eye is blurry. Both eye's are very lazy today. I know the

> myositis is in my eyes so this to will pass. What bothers me the

most

> is that when I have these headaches, even laying my head on the

pillow

> or just propping my head up and laying the backside of my head on

the

> pillow....causes more pain. If I don't have my head touching

anything,

> I do much better.

>

> I went last Thursday for my pulmonary testing. My testing on 2-3-00

> were as follows: MEP: 11 and MIP RV -15

>

> The testing on 09-07-00 were:

>

> MEP: 25 and MIP RV 29

>

> I seem to have more strength in my lung muscles. She (my doctor)

was

> just thrilled with the testing. We'll take another test in Dec. and

> hopefully it will be better. They aren't sure if this will be

lasting

> or it's going to be also a roller coaster ride. We'll see how it

goes.

> But for now I'll stay on the Enbrel....especially since it's

helping my

> lungs to function better.

>

> .... I'm the same as you... I'm not one for taking

medicine...in

> fact I hate it. I would only take my pain meds when I needed

them...

> not a smart thing to do. Now I take them in the morning and at

night.

> It has worked out much better and I don't go through the ups and

downs

> with more pain like I use to.

>

> I also continue to walk because I don't want the only muscles left

to

> waste away but I have to say that I feel horrible afterwards. In

order

> for me to go to the doctors I have to stay down at least 4 days. I

> don't do any walking on those days. By Thursday night I was so

fatigued

> that I came home and went right to bed. I slept off and on the next

> day...terrible headache, eyes burning, blurry vision, upset

stomach,

> weak legs, pain in the arms, back and legs, and I wanted complete

quiet

> so it wouldn't hurt my ears.

>

Gosh- sounds mighty familiar, Vicki. Hate to say it, but I have

the same type headache today and queasy tummy. Only, my headaches

occur on right side of head- and my right eye is the lazy one! Am

supposed to go to church in am to sing in choir- now i have to eat a

little and lay down! Did NOT want to nap today!!!!

[Guest guest]

,

Can you lift your head from the pillow? When things are bad, that is a

" classic " no-can-do-easily for me. When I'm more flared swallowing is also

an adventure!!!!

Ann-Marie

_________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com.

Share information about yourself, create your own public profile at

http://profiles.msn.com.

[Guest guest]

Vicki,

I used to suffer terrible migraines. Mine were due to

estrogen dominance, but this is supposed to work for

all headaches. Massage the skin between your thumb

and forefinger, with the thumb and forefinger of your

other hand. Do it gently, but firmly. Not on the

bone but there a place that the thumb of your other

hand kind of fits into. Wish I could be there to show

you! It doesn't take the headache away but it did

give me some relief from the pain. Sounds strange but

it works! Hope your headache goes away soon and that

you are feeling better. You hadn't posted for a few

days and I was worried about you. Give the massage a

try, let me know if it works.

Hugs,

Cari

--- anzavic@... wrote:

>

> Hi

>

> Headache is still with me. It's always on my left

> side of my head and

> my left eye is blurry. Both eye's are very lazy

> today. I know the

> myositis is in my eyes so this to will pass. What

> bothers me the most

> is that when I have these headaches, even laying my

> head on the pillow

> or just propping my head up and laying the backside

> of my head on the

> pillow....causes more pain. If I don't have my head

> touching anything,

> I do much better.

>

> I went last Thursday for my pulmonary testing. My

> testing on 2-3-00

> were as follows: MEP: 11 and MIP RV -15

>

> The testing on 09-07-00 were:

>

> MEP: 25 and MIP RV 29

>

> I seem to have more strength in my lung muscles.

> She (my doctor) was

> just thrilled with the testing. We'll take another

> test in Dec. and

> hopefully it will be better. They aren't sure if

> this will be lasting

> or it's going to be also a roller coaster ride.

> We'll see how it goes.

> But for now I'll stay on the Enbrel....especially

> since it's helping my

> lungs to function better.

>

> .... I'm the same as you... I'm not one for

> taking medicine...in

> fact I hate it. I would only take my pain meds when

> I needed them...

> not a smart thing to do. Now I take them in the

> morning and at night.

> It has worked out much better and I don't go through

> the ups and downs

> with more pain like I use to.

>

> I also continue to walk because I don't want the

> only muscles left to

> waste away but I have to say that I feel horrible

> afterwards. In order

> for me to go to the doctors I have to stay down at

> least 4 days. I

> don't do any walking on those days. By Thursday

> night I was so fatigued

> that I came home and went right to bed. I slept off

> and on the next

> day...terrible headache, eyes burning, blurry

> vision, upset stomach,

> weak legs, pain in the arms, back and legs, and I

> wanted complete quiet

> so it wouldn't hurt my ears.

>

> As for the testing in the office.... My doctors also

> do the same

> testing. I'm rated a 5.... One month it's a 3.5 and

> the next it might

> be a 6.5... each time is very different. The

> doctors have told me this

> test is just something that they go by but it really

> means nothing as

> far as how the patient is really doing. I bounce

> around so much.

>

> I use to have the same thing with my head tipping it

> back. It has

> gotten better but I still have days where I can't

> tip it back nor side

> to side. Of course I also have osteoarthritis in my

> neck as well so

> this might be due to that disease.

>

> I think our bodies get use to some meds making them

> less

> effective...this might be the case with the Ambien.

> It might be time

> to try something else. I know I sure feel much

> better the next day when

> I get a full, deep sleep.

>

> Hope everyone is having a great day.

>

> Vicki-pm

>

>

__________________________________________________

[Guest guest]

In a message dated 5/2/02 11:36:33 PM Eastern Daylight Time,

NurseCowan@... writes:

> Hi Nan, I had open rny on 4-5, and I had some emotional things for

> the first 2 weeks, and then they disappeared. I was teary or bitchy,

> but my family didn't kill me, or I them LOL Now I am pretty stable

> and very very happy. Just know it can happen, and it will pass! Hope

> this helps

>

OHHHH me too...the bitchy part...I guess it was just that I wanted to be left

alone, and also I had very little energy to expend and they hub and kids

would just be so darn slloooow and duh about things...the bitchiness is

finally wearing off though.

[Guest guest]

No you do not need to keep your opinions to yourself, what you need to

think about is how you word things. This group has been established for

a long while now, and the emphasis has always been on support,

friendship if you want it (and I am one of those who has made friends),

a place to be among those who know what you are going through, and

sharing experiences (if you want to), our stories (again if we want to),

and so on. I struggle to understand why you would feel uncomfortable

with other people's numbers being discussed here, after all that is the

prerequisite of the group really, it is a group to discuss IGAN, and

that involves lab tests, biopsy results, etc.

Of course we respect your decision not to post here, but that is your

prerogative. On hindsight, we perhaps are not the right group for you

are we?

Best wishes

(unknown)

I have very few things to add - but they're necessary.

I come to the group for my personal research. This means I am

looking to use the group as one of my tools for self-education on a

topic that concerns me intimately. My professional life has nothing

to do with IgAn. I apologize if that was misconstrued.

Like IgAn New York, I don't choose to share my personal story. In

recent posts it was claimed that people could choose to interact

with the group in a way that was right for them.

I, personally, feel very uncomfortable when I see somebody's

specific numbers being discussed - that is a feeling that is not

shared by the group. I don't think that makes it an invalid feeling.

As for the whole military-academic dynamic, it is a fact in the

social sicences (which is my field) that these two groups are often

positioned as adversarial for a lot of reasons - I'm not saying I'm

right I'm just saying it is natural for me to disagree with Pierre's

kind of approach, which relies on empirical data and is based in a

specific professional culture, and for Pierre to disagree with mine

which relies on the use of critical thinking. I am trying to respond

to Pierre in a way that I think will make sense to him and I am

aware that we come from two fields that do not typically have much

success in communicating with each other. I have many family members

who are in the military and am very aware that their life-philosophy

and my own are at odds with each other most of the time. I'm not

saying one is better than the other I'm saying they are radically

different.

I asm hurt by your comments since it seems to me that the only time

I respond to a post in a way that could be construed as contrary - I

am criticized very harshly, in very personal ways.

Peer support can include a wide variety of elements. I don't always

agree with the general opinion of the group and I suppose that's my

failing since the group seems to have a concensus on most subjects

but because I am aware of that fact, I generally keep my feelings to

myself.

Please stop reacting to me on a such a deeply personal level - It's

not my intention to offend or to be offended. I'm just trying to

sort out differences of opinions with due respect to everyone

involved.

I'm here for the most part, to read the posts that are relevant to

my situation. It's time I went back to doing only that. This will be

my last post.

Obviously, I should keep my opinions to myself.

[Guest guest]

Hi Miriam.

I've gotten a little behind in messages. I think I missed yours.

I say I've had it for 25 years, but that's only from the time a doctor

checked my urine with a dipstick and found blood in it in 1977. It may have

been developing for even longer than that. However, you can read my entire

IgAN story on our Yahoo Group home page:

http://groups.yahoo.com/group/iga-nephropathy/

Click on " Files "

Then on the folder entitled " Personal stories " . You will see " Pierre's

story " in there. Just click on it and it should open right in your browser.

Let me know if you can't get to it for any reason.

Pierre

(unknown)

> Pierre,

> I have been reading your messages to the group for a few months now since

i

> joined the group and you have been very very helpful and I really

appreciate

> the way you are able to view this illness and what you are going through

in

> a positive way. (As positive as possible under the circumstances.)

>

> You have mentioned a few times that you have had igan for 25 years. How

> many years did you have it while it was stable and there were basically no

> changes in your lab tests/kidney function? Then how long did it take for

> things to change until the point of dialysis?

>

> Thank you again for being so helpful!

> Miriam

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

>

>

[Guest guest]

Hi ,

Welcome to our support group. I was just about your age when I first started

having symptoms too, and now I am in my 40's and still not yet on dialysis.

I hope you find encouragement that this disease does not stop patients from

having very full lives. I have married, raised two children, graduated from

college, worked full time and been very active in my church and been running

4 or 5 days a week for all these years.

To get a detailed understanding of IgAN, I would first recommend you go to <A

HREF= " www.igan.ca " >

www.igan.ca</A> and look through Pierre's web site. It will probably answer

most

of your questions. If you have more questions after reviewing the site,

don't hesitate to ask, and don't forget that you are not alone. We are here

to support you all the way! I will put a note on my calendar to pray for

your biopsy on Dec 13th.

Welcome again !

[Guest guest]

Hi .

Welcome to the group.

Don't worry about the biopsy. There's nothing to it.

Have you checked out www.igan.ca yet? Go into the IgA nephropathy notebook

section of the site. That will give you a pretty good idea about IgA

nephropathy in general.

Good luck with the biopsy.

Pierre

(unknown)

>

> hi i am 16 and i might have iga-nephropathy i have to have a biosy on dec.

13 if you can please e-mail me everything you know about this my e-mail

address is snowborader2185@... and i would love to talk about this with

people if you want to im me at bryant2185 thanks bye bye

>

>

[Guest guest]

- I have the exact same questions as you. My son is on suppliments as well...I know he will need to be on some sort of suppliments with this diet...but do not know which one would be best. And I don't really understand how to get started- it seems so complicated. I need help!

-

llightxx wrote:

Hello - I am new to this group. I have a 4 year old son who was diagnosed one year ago as either on the mild end of the autism spectrum or developmentally delayed with autistic traits. We have had him on the gfcf diet for almost a year. We had absolutely amazing results the first few months of the diet. He made tremendous gains in language, stopped his horribly oppositional and resistant behavior, became much calmer and less irritable, etc. I feel this diet is still helping him but recently heard about SCD.I have ordered Elaine Gottschall's book but am wondering if this diet is appropriate for all children was ASD? My son does not have any major gastrointestinal symptoms other than the ones caused by some of the supplements we have him on. Is this considered a lifelong diet or something to be done until the gut is

healed? We had just starting adding lots of supplements to his diet and I'm trying to decide whether to continue with the supplements or stop them and try the diet first. I feel like I am running out of time. I definitely do not want to do this diet but feel that it is something that we need to consider trying. Any information would be appreciated.Thanks in advance

[Guest guest]

On Sat, 13 Sep 2003 15:49:15 -0700 (PDT), " nicole daly "

said:

> - I have the exact same questions as you. My son is on suppliments

> as well...I know he will need to be on some sort of suppliments with this

> diet...but do not know which one would be best. And I don't really

> understand how to get started- it seems so complicated. I need help!

> -

Hi ,

We have a website to help parents:

http://www.pecanbread.com

And also a list:

http://www.pecanbread.com/register.shtml

If you still need more help

we have SCD counselors to help parents do the diet.

All the best,Mimi

>

>

> llightxx wrote:

> Hello -

>

> I am new to this group. I have a 4 year old son who was diagnosed

> one year ago as either on the mild end of the autism spectrum or

> developmentally delayed with autistic traits. We have had him on the

> gfcf diet for almost a year. We had absolutely amazing results the

> first few months of the diet. He made tremendous gains in language,

> stopped his horribly oppositional and resistant behavior, became much

> calmer and less irritable, etc. I feel this diet is still helping him

> but recently heard about SCD.

>

> I have ordered Elaine Gottschall's book but am wondering if this diet

> is appropriate for all children was ASD? My son does not have any

> major gastrointestinal symptoms other than the ones caused by some of

> the supplements we have him on.

>

> Is this considered a lifelong diet or something to be done until the

> gut is healed? We had just starting adding lots of supplements to

> his diet and I'm trying to decide whether to continue with the

> supplements or stop them and try the diet first. I feel like I am

> running out of time. I definitely do not want to do this diet but

> feel that it is something that we need to consider trying. Any

> information would be appreciated.

>

> Thanks in advance

>

>

>

>

>

[Guest guest]

YES, they shot me up with 60 mg on Monday then I went back to 30 on Tuesday, I was feelin like I could fly...until Tuesday ~sigh~

Vicky81856

••••••••••••• Original Message •••••••••••••

Quick question I forgot...to sing my last entry...andDo people feel a little high on perdnisone?donnaS 11/05 IIP NY__________________________________________________

[Guest guest]

Donna, In reply to your question...prednisone at times causes me to feel high, though not to any great extreme and then there are times I feel like it is doing nothing for me. Then there is the issue of weight gain.... Ha! Funny thing(twisted joke by the makers I think). Saw my doc last month, he asked how I was doing.. My reply was Great! Other than I have more chins than a chinese phone book. I'm chasing trucks down the road gnawing on tires and I have developed an affinity for tree bark. While the use of prednisone I feel has been beneficial to my well being and recovery whilst battling this monster. I wish, hope and pray that no other person walking the face of the Earth should have to take any form of steroids. Wally Holmesly ipf 10/06 west Texas donna siegmann wrote: Quick question I forgot...to sing my last entry...andDo people feel a little high on perdnisone?donnaS 11/05 IIP NY__________________________________________________

[Guest guest]

Donna...Yes and ADD and jittery and depressed and angry and sad and,

and, and!!!!!

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and MomMom to Darah

“I’m gonna

be iron like a lion in Zion” Bob Marley

donna siegmann wrote:

Quick question I forgot...to sing my last entry...and

Do people feel a little high on perdnisone?

donnaS 11/05 IIP NY

__________________________________________________

[Guest guest]

Wally, Boy are you right!!!!!

Z fibriotic NSIP/05

Z fibriotic NSIP/o5/PA

Potter, reader,carousel lover and MomMom to

Darah

“I’m gonna be iron like a lion in Zion”

Bob Marley

WALLY HOLMESLY wrote:

Donna,

In reply to your question...prednisone

at times causes me to feel high, though not to any great extreme and

then there are times I feel like it is doing nothing for me. Then

there is the issue of weight gain.... Ha! Funny thing(twisted joke by

the makers I think).

Saw my doc last month, he asked how I

was doing.. My reply was Great! Other than I have more chins than a

chinese phone book. I'm chasing trucks down the road gnawing on tires

and I have developed an affinity for tree bark. While the use of

prednisone I feel has been beneficial to my well being and recovery

whilst battling this monster. I wish, hope and pray that no other

person walking the face of the Earth should have to take any form of

steroids.

Wally Holmesly ipf 10/06 west Texas

donna siegmann <dsiegmann1> wrote:

Quick question I forgot...to sing my last entry...and

Do people feel a little high on perdnisone?

donnaS 11/05 IIP NY

__________________________________________________