Re:

[Guest guest]

Possibly intracecally?

Dawn

Services PRN wrote:

> She also has an implanted pump which delivers 400 mcg of clonidine and

> 2 mg of morphine *intra-see-cally* every day.

>

> I can't even think today.....

>

> Becky

>

>

>

>

>

>

>

>

>

>

[Guest guest]

I wonder if the dictator is saying " intrathecally " which means (according to

Dorland's) within a sheath; see also under injection. Good luck,

She also has an implanted pump which delivers 400 mcg of clonidine and 2 mg of

morphine *intra-see-cally* every day.

I can't even think today.....

Becky

[Guest guest]

Suzie - this is ringed sideroblasts.

Carol V.

>>> " Suzie " 07/30 11:56 PM >>>

Clear DayShe presents for follow-up of her refractory anemia with s/l ring

servoblasts.

Has anyone heard of this?

Suzie

Give me the strength to change the things I can, the grace to accept

the things I cannot, and a great big bag of money.

[Guest guest]

Bev,

You may be looking for goniometer. An aparatus to measure joint movements

and angles...

Carol B.

>

> Still the same patient with degenerative disc disease

>

> SPINE: Cervical spine: Pain on palpation. C6-C7 was painful but full

range

> of motion of the cervical spine. Examination of range of motion was

**done

> with gronialmeter**.

>

> I cannot really make out what he is saying - any ideas? I have never had

a

> doctor go into such detail on a physical examination and I am having a

> terrible time with it! I even spent 15 minutes completely reading up on

the

> internet on the details of what a doctors does during the PE and still

have

> lots of unanswered questions! I just might end up having to call the AAMT

> help line with a list of questions yet but they do not open for a couple

of

> hours yet.

>

> Bev W

>

>

> PLEASE VISIT THE NMTC WEB SITE - http://go.to/nmtc

>

[Guest guest]

On Thursday, October 05, 2000 at 1:05 AM or thereabouts, Services

PRN wrote the following about :

SP> Skin: Some s/l *cheilosis* noted on his surgical scars, mostly

SP> in the abdomen

SP> But the dictionary says lips, would this be the wrong word I am

SP> hearing???

I would suspect they mean keloidosis (formation of keloids,

sometimes written as cheloids)

[From Stedman's Concise]

keloid

A nodular, firm, movable, nonencapsulated, often linear

mass of hyperplastic scar tissue, tender and frequently

painful, consisting of wide irregularly distributed bands

of collagen; occurs in the dermis and adjacent subcutaneous

tissue, usually after trauma, surgery, a burn, or severe

cutaneous disease such as cystic acne, and is more common

in blacks. Syn: cheloid.

Chuck

--

=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=

Chuck Mattsen mattsen@...

http://www.mindspring.com/~mattsen

=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=-=

Random Thought/Quote for this Message:

1 Minute of Shut Mouth worth 1 Hour of Explanation

[Guest guest]

Oh hooray...I went and reset all my accounts and its all working again.

I was starting to have palpitations...imagine, no ceda mail!

millgate@...

[Guest guest]

Hey Glenda - I'm getting mail from egroups! Hope you are now too

Bonnie

> Testing testing...actually, I'm not getting any mail from any of my

egroups

> lists!

> millgate@...

>

>

>

>

[Guest guest]

, thank you so much for your kind words and prayers. The most

unsettling thing about this illness is its unpredictability and the unknown

course it will take. Regards, Pam

>From: W4JC@...

>Reply-To: iga-nephropathyegroups

>To: iga-nephropathyegroups

>Subject:

>Date: Tue, 26 Dec 2000 13:33:49 EST

>

>Pam,

>

>I am so sorry to hear of the health struggle is currently in. Please

>know that you and and your family are in my prayers. Definitely not a

>fun way to spent a holiday, but I am thankful that he is in such a good

>hospital, and that this all happened when he was hone instead of when he

>was

>in Cabo. I pray he will stabilize quickly, and that the doctors will have

>Godly wisdom in treating him. I also pray you will have His peace even as

>it

>is difficult to watch your son struggle. God bless.

>

>

>

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com

[Guest guest]

Hi thanks for your response. Petra is nine. She experiences alot of

joint pain right in the groin and legs. She does have quite a round baby

belly as someone called it. She also has quite a bit of intoeing , her big

toe spreads

wide to create balance. Her feet are curve like half moons, and they have

been since,birth. Iwas told before her diagnosis that her hips are out of

line and her shoulders are out of line. Her back is okay still. Aparrently

one leg is shorter

than the other. just yesterday Jan 20 ,2001 we went to the Hospital with

apossble fractored foot. The Dr. said that she has bruised it. So she has a

tenser on it now. Any way please keep me informed, about what to do.

How do I express this posture problem to the Dr. Since they have finally

diagnosed her. Thnaks

> >

> >

> > > Dear :

> > > Welcome to the list! I bet you will find now with the EDS diagnosis,

> > > that many " odd " things make sense. I am one of the ones who posted

about

> > > the eye problems. Other than being nearsighted I was OK til about a

year

> > > and a half ago. A lot of problems with glare, images staying on my

> > > retinas too long (so I can still see them when I look at the next

> > > object) and severe eye muscle weakness. There is something I have

called

> > > " increased layering in cornea and crystaline lens " . This is supposed

to

> > > acount for the glare. My EDS affects every single part of my body.

Weird

> > > things like most people would not believe. Feel free to ask any

> > > questions, someone here usually has an answer or an article. Also

check

> > > out my webpage. the story of what happened to me and several of my

> > > splints are there. http://www3.ns.sympatico.ca/whuzzy

> > > Joyce

> > >

> > >

[Guest guest]

Hi --

> How do I express this posture problem to the Dr. Since they have finally

> diagnosed her. Thnaks

Just describe what you wrote in your original post.

Also have Petra describe to the doc the nature and location of the pain she's

having. When I had the pinched nerve before my back surgery, I had pain in my

back and down the backs of both legs, all the way to my feet. I didn't have

pain in the groin at that time. The pain was so bad I was on percadan round the

clock for 6 months. Even though the surgery was a major ordeal, it was

completely successful. Felt almost miraculous standing and sitting with no

pain.

As for feet, I had 2 surgeries on each foot to fuse bones and remove bunions.

My feet aren't shaped like half moons, but did have some problems.

Oh, and I did have one leg a little shorter than the other and while I was still

walking had to have a lift put on one shoe. Now after all the bone fractures

and surgeries I have no idea whether they are the same length but it doesn't

matter as I don't walk more than taking a few steps to transfer.

Good luck to you!

Feel free to ask any questions. Again, our diagnoses may be different so what

works for me may not apply to your daughter, but it might be useful to share

info anyway.

--le

> > >

> > >

> > > > Dear :

> > > > Welcome to the list! I bet you will find now with the EDS diagnosis,

> > > > that many " odd " things make sense. I am one of the ones who posted

> about

> > > > the eye problems. Other than being nearsighted I was OK til about a

> year

> > > > and a half ago. A lot of problems with glare, images staying on my

> > > > retinas too long (so I can still see them when I look at the next

> > > > object) and severe eye muscle weakness. There is something I have

> called

> > > > " increased layering in cornea and crystaline lens " . This is supposed

> to

> > > > acount for the glare. My EDS affects every single part of my body.

> Weird

> > > > things like most people would not believe. Feel free to ask any

> > > > questions, someone here usually has an answer or an article. Also

> check

> > > > out my webpage. the story of what happened to me and several of my

> > > > splints are there. http://www3.ns.sympatico.ca/whuzzy

> > > > Joyce

> > > >

> > > >

[Guest guest]

I can write about anything.....have time to edit if needed or add

more....that is what i was told to do 5 wks ago...was to send it to the judge

in Sacramento....he is a visiting judge who will hear my case in Portland.

Problem was that the dr's wouldn't get the letters to me...before I got the

court date. Plus no one seems to know Where my file is either.

the aty I saw today...even tho the court papers from the Judge said to send

them to him,,,,,told me no...to give it to him

This aty also does Not want to use my papers.....said I probobaly won't like

the way he will do it...that I appear to be a women (old at 51) that has

worked hard to understand my illness but the fact remains that EDS is still

not a recognized illness. Plus the letters I did get from the drs....only

state the fact....but have to evidence backing it and that is all the SS

people care about.

Not that I have evidence that they are WRONG....that I have papers from other

EDS who have the " mini strokes " but the atty said I can't use the word

" stroke " ! Has to have the technical name....that is the problem...just the

short time I was there...my Irish temper was rising...which before I could

get out of there I was getting more intense " stokes " and could hardly talk.

Plus my face went numb...down into my throat and arms. But you see...the

neuro dr says " it is all in my head " and I have No One up here that will

definitly swear that I have EDS Fibro Chronic Fatigue or severe depression.

The only evidence I have is that I am TRULY DIABETIC.

Everyone agrees that without an aty....I won't win.

This is getting way to much....and I want to make it to my daughters wedding

on April 21st after that......who knows

But thanks to all of you and your support...I just wish I had one of you by

my side.

Katharine...

I am sorry for sounding so pathetic....most frustrated as I have not been

able to find ANYONE up here to help...no advocates...no help from Social

Services...now that the aty's are suppose to handle this...it's all to

long....thank though again..

[Guest guest]

Deb,

Thanks for the advice. I have a sling but it pulls my

shoulder out ...(darned if you do, darned if ya don't)

I'm apt to try it though I can deal with the shoulder

sliding in and out this elbow thing really

hurts...maybe cause it's a new one

What does the ace brace look like? Would Wal Mart or a

pharmacy have one?

--- Deb wrote:

>

>

> > Since the cast, it seems to be doing it more.

> Could

> > the weight of the cast have somethibng to do with

> > that?

>

> Bet ya it does.. dont you have a sling to use so you

> can take the strain off

> it sometimes??? just a thought.. How about a ace

> elbow support till the cast

> comes off???

> debby

>

>

>

[Guest guest]

>

>

> What does the ace brace look like? Would Wal Mart or a

> pharmacy have one?

actually they are more a support not a brace.. It is elastic and would slide

over your hand / wrist and up your arm.. at least most of them do... come

small med and large..

Yes you could get them at a decent pharmacy and probably at wallmart or

Kmart

:o0 hope you find somthing that helps sweetie!!!!!

Bug Hugs

debby

[Guest guest]

>

> If Josh's jaw is being dislocated and coming too far forward when he

> is

> swallowing, it could affect the swallow by not letting the tongue keep

> the

> food (bolus) contained and it might be slipping down into the airway

> before

> the airway closes off. The back of the tongue and the back of the

> throat

> may not be touching to create a good " seal " for protecting the airway.

>

I realized as I reread your comments this morning that this is almost

exactly what described to us last week when he was having

problems.

It always amazes me how aware Josh is of his own body.

[Guest guest]

Nice to hear about someone who actually did it, Marty (tonsillectomy that is). Sorry you're on dialysis now, but, stick around, I may need your expertise when I reach that stage in a year or two. Right now, I'm hoping the Avapro will buy me more time than my nephrologist predicts.

Pierre

Hello. I, for one have tried the tonsillectomy route. It did not help my IgAN at all, in fact, after the surgery my function began declining much more rapidly and about 5 years later, I was at end stage. Now, I'm not attributing my decline to the tonsillectomy. It could have merely been coincidental. Also, I tried the tonsillectomy quite late in the game. The research says that it will benefit those who have frequent bouts of tonsillitus if done early (while kidney function is still relatively normal).

It's interesting that you mention that your daughter has stomach problems and food allergies. Some people think that food allergies could induce IgAN in some people. For example, people who have celiac disease have a change of getting IgAN secondary to that disease. I believe it is somewhat different than idiopathic (no known cause) IgAN in that it results simply from too much circulating IgA as a result of the gastrointestinal inflammation. More info can be found by searching celiac on the internet.

Marty

You seem to have more info than these DR's who say nothing. My daughter has had IGA for 15 or so years. No real problems except joint pain, stomach problems and food allergies. She has huge tonsils that I think need to come out. How many people have tried that in this group. She has normal kidney function I guess and normal BP. Her protein was 1100 on new 24 hour. Is this high enough to go on these Ace drugs? How long before it gets to the point of steroids and other serious things. Have you tried Medilline from China and acupuncture. I know it isn't a cure but I have heard great things about it. Oh one more thing did anyone have sudden weight gain with this disease? I am so glad I found this site as no one in the medical field has any answers besides fish oil. I think my daughter should try low protein diet but at 28 that is a hard lifestyle I know. Thanks so much for all the info. Lets cure this thing!!

[Guest guest]

Dear Lithe;

I will say a prayer for Kirk, and so, I'm sure will

everyone else. Be strong and try to look after

yourself as well, it sounds like you're (maybe)

through the crisis point.

take care.

s.

--- kirk narmore wrote:

> Dear friends:

>

> My husband is Kirk and he has been in touch with

> your group for awhile now. My husband has faced a

> setback in dealing with his IGA. Kirk came down

> with flu symptoms and went to the ER when he was not

> producing urine after more than 12 hours. He was

> diagnosed with severe pneumonia also his lab and

> urine came back bad. He was rushed down by

> ambulance that night to a hospital where his neph.

> specialist is located. He maintained well on

> Thursday, complaining of difficulty breathing. I

> received a call early Friday morning and was told

> that was in ICU on a respirator. He went into

> respiratory distress and his kidneys worsening.

>

> Positive news: Kirk is on dialysis now and he is

> doing well. He is not having any troubles except

> with cramping after treatment. They are taking lots

> of fluids out of him at the present time. This is

> to help his kidneys and his pneumonia. He is under

> heavy sedation to prevent him from pulling out his

> tubes. And letting his body heal in the process.

>

> We need prayers for Kirk and our family. He was

> laid off of his job a few days before and the

> insurance is no longer there. We will get through

> this tough time, but it is going to take awhile.

> Please keep my husband in mind and I will make brief

> updates when I can.

>

> With love to all,

>

> Kirk's wife Lithe

>

_______________________________________________________

[Guest guest]

Dear Lithe

Kirk and yourself

are definitely in my prayers. I

hope that Kirk continues to make good progress, and that he will soon be home

with you fit and well. Try to stay

as positive and well as you can, and know that we are here to listen to you.

Love and

special thoughts

-----Original

Message-----

From: kirk narmore

Sent: 06 August 2001 03:48

To:

iga-nephropathy

Subject:

Dear

friends:

My

husband is Kirk and he has been in touch with your group for awhile now.

My husband has faced a setback in dealing with his IGA. Kirk came down

with flu symptoms and went to the ER when he was not producing urine after more

than 12 hours. He was diagnosed with severe pneumonia also his lab and

urine came back bad. He was rushed down by ambulance that night to a

hospital where his neph. specialist is located. He maintained well on

Thursday, complaining of difficulty breathing. I received a call early

Friday morning and was told that was in ICU on a respirator.

He went into respiratory distress and his kidneys worsening.

Positive

news: Kirk is on dialysis now and he is doing well. He is not

having any troubles except with cramping after treatment. They are

taking lots of fluids out of him at the present time. This is to

help his kidneys and his pneumonia. He is under heavy sedation to prevent

him from pulling out his tubes. And letting his body heal in the

process.

We need

prayers for Kirk and our family. He was laid off of his job a few days

before and the insurance is no longer there. We will get through

this tough time, but it is going to take awhile. Please keep my

husband in mind and I will make brief updates when I can.

With

love to all,

Kirk's

wife Lithe

To unsubscribe

from this group, send an email to:

iga-nephropathy-unsubscribeegroups

Your use of

Yahoo! Groups is subject to the Yahoo!

Terms of Service.

[Guest guest]

I'll keep Kirk in my daily prayers...

kirk narmore wrote:

Dear friends:

My husband is Kirk and he has been in touch with your group for awhile now. My husband has faced a setback in dealing with his IGA. Kirk came down with flu symptoms and went to the ER when he was not producing urine after more than 12 hours. He was diagnosed with severe pneumonia also his lab and urine came back bad. He was rushed down by ambulance that night to a hospital where his neph. specialist is located. He maintained well on Thursday, complaining of difficulty breathing. I received a call early Friday morning and was told that was in ICU on a respirator. He went into respiratory distress and his kidneys worsening.

Positive news: Kirk is on dialysis now and he is doing well. He is not having any troubles except with cramping after treatment. They are taking lots of fluids out of him at the present time. This is to help his kidneys and his pneumonia. He is under heavy sedation to prevent him from pulling out his tubes. And letting his body heal in the process.

We need prayers for Kirk and our family. He was laid off of his job a few days before and the insurance is no longer there. We will get through this tough time, but it is going to take awhile. Please keep my husband in mind and I will make brief updates when I can.

With love to all,

Kirk's wife Lithe

[Guest guest]

You and your family are in my prayers.

Truly,

"Blessed are we who can laugh at ourselves for we shall never cease to be amused."

[Guest guest]

I, too, am sorry to hear of Kirks setback. My family will pray for Kirk and

your family. Keep positive... I am sure things will be fine and you will

get through this tough time. I always told myself when my son was down that

God doesn't give us anything we cannot handle. And I truly beleive this.

(Son, , 8 yrs old dx with IGA)

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Lithe, you and Kirk are in my prayers.

Marty

Dear friends:

My husband is Kirk and he has been in touch with your group for awhile now. My husband has faced a setback in dealing with his IGA. Kirk came down with flu symptoms and went to the ER when he was not producing urine after more than 12 hours. He was diagnosed with severe pneumonia also his lab and urine came back bad. He was rushed down by ambulance that night to a hospital where his neph. specialist is located. He maintained well on Thursday, complaining of difficulty breathing. I received a call early Friday morning and was told that was in ICU on a respirator. He went into respiratory distress and his kidneys worsening.

Positive news: Kirk is on dialysis now and he is doing well. He is not having any troubles except with cramping after treatment. They are taking lots of fluids out of him at the present time. This is to help his kidneys and his pneumonia. He is under heavy sedation to prevent him from pulling out his tubes. And letting his body heal in the process.

We need prayers for Kirk and our family. He was laid off of his job a few days before and the insurance is no longer there. We will get through this tough time, but it is going to take awhile. Please keep my husband in mind and I will make brief updates when I can.

With love to all,

Kirk's wife Lithe

[Guest guest]

Thank you Pierre.

From what I've seen so far you seem to know a lot about this disease -more

than my neph does, I dare say. Ofcourse, as the old saying goes here in

Cyprus, " He who suffers is the real doctor " (I am translating from Greek

here). I always read your postings with special interest.

As regards visible blood in the urine (macrohematuria, if I am not

mistaken) I've had it only on three or four occasions so far, (and we are

talking about a time span of about 16 years since my IgAN symptoms were

first observed) during spells of upper respiratory infections. Of course

the microhematuria is always there. The bad thing is that my proteinuria

has gone up during the last two or three years. I hope things don't get

worse, not very soon anyway. I hope similarly for you and every other

member of this group.

I am glad you are familiar with Cyprus. There are a lot of Cypriot

emigrants to Canada

too who have made for themselves new homes in your hospitable country. Yes,

a Canadian military contingent has been stationed in Cyprus since early

1964 when UNFICYP, the United Nations peace keeping force in Cyprus, was

established. We are grateful for their humanitarian efforts in our country.

I am not sure though If the Canadians are still here or were replaced by UN

troops of another nationality. Back in the 60s and 70s as I can remember,

the Canadian contingent of UNFICYP was so popular that all UN troops in

Cyprus, although they came from 5 or 6 different other countries

altogether, were known by the Cypriots as " the Canadians " .

Yours truly,

Dan -Cyprus

> Date: Mon, 13 Aug 2001 16:25:18 -0400

>

>Subject: Re: Dan's story

>

>Hi Dan. Let me echo 's sentiments in welcoming you to the group. That

was a very complete and interesting description of your IgAN story. Seems

like it might be a good candidate for posting in our " Personal Stories "

folder. I'm 48, and your story has many similarities with mine, although I

have never had visible blood in the urine that I know of.

>

>Never been to Cyprus, but I'm familiar with it. I served with many people

in the army who had been there as part of the Canadian Army peacekeeping

troops that used to rotate there. From what I've heard, it's quite a

beautiful place.

>

>Pierre

>Canada

[Guest guest]

Hi Dan. Thanks for the compliment. I don't know even a fraction of what a

nephrologist knows, but I guess you do pick up a few things over 25 years.

There are others in the group who know more than I do about things they have

experience with and I don't. Dialysis and transplant for example. Haven't

been there yet, so Marty, Robin and and a few others know a lot

more about that than I do. I'll be calling on their experience when I get

there : )

The Canadian contingent finally left Cyprus a few years ago, after being

there something like 35 years or so. I think they were replaced by British

troops at the time. Don't know who is there now. I had a weird career

progression and never got the chance to go there.

Pierre

Re: Dan's story

> >

> >Hi Dan. Let me echo 's sentiments in welcoming you to the group.

That

> was a very complete and interesting description of your IgAN story. Seems

> like it might be a good candidate for posting in our " Personal Stories "

> folder. I'm 48, and your story has many similarities with mine, although I

> have never had visible blood in the urine that I know of.

> >

> >Never been to Cyprus, but I'm familiar with it. I served with many people

> in the army who had been there as part of the Canadian Army peacekeeping

> troops that used to rotate there. From what I've heard, it's quite a

> beautiful place.

> >

> >Pierre

> >Canada

>

>

>

>

[Guest guest]

Thank you , it's good to hear from both sides of the coin!

-----Original Message-----From: Malt Sent: Sunday, September 23, 2001 3:03 AMTo: iga-nephropathy Subject: RE:

Hi

Thank you for your message. Reading through it, I think you have a very good attitude toward your husband’s condition, with a balanced and practical approach to it.

Being on the other side of the coin, i.e. the patient so to speak, I have to say that my husband adopts the very same attitude. In the beginning I was very much playing the role of the ‘victim’, and a few heated discussions between us earlier on into my diagnosis, brought me up sharp and quickly. Since then, my husband has been very supportive, accompanying me to appointments when his job allows it, and reading information and taking an interest in the messages on this board. I find emotional support far more rewarding than practical support, I am very independent in my management of this condition, preferring to make all my own appointments and making notes to take along to my medics (invariably lots of questions LOL!!!).

I agree that everyone approaches sickness with partners in a completely different way, when my husband was very ill during 1994/5 I took on the role of nurse, receptionist, housewife, and kept down a full time job. In D’s case he was totally unable to do things for himself because he was so ill, but as soon as he started to get back on track, I lessened my load, and indirectly encouraged him to do things for himself. There were times during that year, that I felt resentful, tired and plain fed up with the hospital merry-go-round, bit through communication we go through it.

I consider myself to be very fortunate to have someone who takes such an active role in my well-being, as we know this disease is very much an invisible one, and I have had little or no sympathy from family members, because and I quote ‘you look so well’!!!! I certainly do not have to take any medications as the moment, my main problem being flank pain, and extreme fatigue, and the constant pain of picking up any sort of virus that happens to swing my way. My husband understands that I get tired easily and knows that during the afternoon sometimes I just have to take a nap for an hour. He has also supported me since my medics insisted I give up my work, which is no small thing I can tell you.

So in summary I think one’s approach to this situation with partners is depends much on the personality of each of us, and the attitude of the patient to their condition. I am a firm believer in talking, without it you pretty much are playing guessing games as to how each other is feeling. I certainly don’t think you have taken up space with unwanted information, very much wanted so as to help those new people facing this, and after all that is what this group is for to share experiences and offer support.

A heartening message , and one I think you should be proud of.

With best wishes

-----Original Message-----From: Klap Sent: 23 September 2001 01:13To: iga-nephropathy Subject: RE:

I do think people deal with illnesses in different ways and we havediscussed our approaches to this in therapy. He thinks I way overreact and Ithink he's in denial. The therapist said that people tend to see-saw offeach other. When one is up the other is down, the further down one goes, thefurther up the other goes and so on. What we have to try to do isindividually control our responses to each other's behavior. It makes senseto me. I'm at a point with it in terms of our discussing it, that I won'targue with him about whether the lab tech. screwed up or whether thenephrologist is incredibly pessimistic or not. I have never been involved inhis medications at all. Don't know what he's on really other than it beingsomething for blood pressure and something for gout.Medical appointments I think are serious enough to nag him about because hehas an obligation to me and to the kids to be as healthy as he reasonablycan be. I'll even call and make appointments for him if he would like me to,not because I'm being controlling, but more because it's been clear in ourrelationship that I am the person to make the phone calls (billingquestions, stuff like that). I'm not going to wear a stop watch and runaround reminding him about medications and chasing him with a blood pressurecuff though.To his credit, he appears to take his medications with regularity and he hasalways been a regular exerciser and a very good eater (much better than me).He doesn't let things get him down. If anything, he would be more inclinedto overdo it physically and mentally.After he got the bad news earlier this year that his kidney function wasdown to 50% he sat at the computer every night for over a month playing cardgames in the dark until very late at night. He's not a big computer personand it got really annoying that I was getting 3 kids ready for bed eachnight without help, but knowing that it was probably related to his anxietyabout his medication condition I just swallowed it. He kind of snapped outof it after a bit and he is much like his regular self, but like I said,kind of on edge more than usual.I don't mean to clog up the group with so much superfluous informationalthough I suspect many couples in situations like this experience similarchallenges.-----Original Message-----From: andria Blaelock Sent: Saturday, September 22, 2001 7:28 PMTo: iga-nephropathy Subject: Re: Go girl!Reply-To: iga-nephropathy To: iga-nephropathy Subject: Date: Sat, 22 Sep 2001 14:38:38 -0400 (EDT), your situation with your husband sounds quitefamiliar. As you know, J. and I have been over justabout every emotional hill and into every dark valleythis condition can drag two people through.I'm learning it takes a certain detached resolve on mypart to get him to attend to his obligations to hishealth care. Explaining helps.The other day he was unable to come out with me,again, to take a hike in the hills around Ottawa. Itold him, in a very clear, calm, unemotional voice,that I was getting impatient with his decision to beincapacitated by this illness and by how much itcontinues to slow down the fun side of my life. He wasa bit annoyed at first and said, "Sure, it's all aboutyou, this doesn't bother me at all..." I was very calmand loving and instead of reacting with frustration asI have in the past, I reminded him that I was veryconcerned with how he was feeling and have done a lotto try to make things easier on him. In addition tothose efforts I have done everything humanly possibleto get him to keep appointments, do the bloodwork andsee the appropriate doctors about his current problem,(stomach-aches) and have finally come to theconclusion that he must get some benefit out offeeling lousy since he has refused to pursue anypossible means of fixing it. (He's felt this way forthree weeks now and he's just let it continueunchalleneged.) So, "nothing personal" I told him, "Ijust miss having you around and I'm sad to think you'dprefer to be sitting on the couch feeling nauseated togoing out with me. Since that seems to be the way itis -- see ya." That seemed to hit home. In fact wenegotiated a trip to one of the major galleries inOttawa instead of my hike that day so that we couldstill get out and do something I enjoy and he couldhave the constant reassurance of a bathroom nearby.It has also helped to remind him that he is the onlyperson who can take himself to the doctor and thatwhatever is going on, it won't stop happening justbecause he refuses to attend to it.I've stopped trying to force him to deal with hishealth issues and started organizing our lives aroundwhatever health baseline he presents. My attitude hasbeen -- "if this is as good as it gets then I guess westart treating it that way..." He doesn't want tothink being treated like an invalid is as good as itis going to get so he's started attending to things.Best of all, it's much easier on me. I love him, tellhim as much, explain all my feelings and worries, tellhim what I would like him to do, what I think I woulddo and then let go completely. I'm not even sure whattimes he's got his meds scheduled for anymore. If hewon't try to manage this disease I can't make him.That attitude, strange as it sounds, has made him dealwith things much more promptly than any amount ofnagging. He is also more open in discussions about thewhole kidney thing.Of course, that's this week.The one thing I've learned about this roller coasteris that you never know what's coming up next. Thetrack is never the same ride twice. (to stretch themetaphor) so you're never really prepared for the nextcurve.I think we have to learn to surf the waves as theyhit. Stay above it and remember it's all temporary.Always. Tomorrow there will be a whole new set ofissues to contend with, that's probably all you candepend on.One more thing; you're a couple, that means nostruggle is ever entirely his fault or entirely yours.Fix what you can on your side, fix what you cantogether and then let yourself off the hook and carryon._______________________________________________________

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> Hi I'm new to this message group.

>

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Welcome to the group.

Pierre