Re: Thank you to all who replied

[Guest guest]

Hi :

You are in good company here when it comes to family not

understanding. This subject seems to come up often and I don't think

any of us have found a solution for explaing IGaN to our families. I

often feel if they cannot see anything physically wrong with you,

then you are fine. As we all know this is not the situation.

Since my diagnosis in May 2004, my mother has gone to every neph

appointment with me. She keeps tight tabs on all my labs and thinks

as long as everything continues to improve, I'm going to beat this

thing. Only problem is that my creatnine still varies between 2.5

and 3.0 and my proteinuria is 3+g. When I was first diagnosed my

creatnine was 5.2 and protenuria was 3+g. So, there are some

improvements, but it appears the IGaN is still very active.

I hope this helps some. Hang in there. We all know and understand

what you're going through. This is a great place to get support and

imformation, which is what we all need.

> Hello!

>

> Thank you to everyone who helped me out with thoughts about the ACE

> inhibitors. Well the renegade side of me took over and I stopped

> taking the meds. Well two days after that move I was in agony with

a

> BP of 130/119.....so I'll continue to take it until I can see my

doc

> and get it changed. :/

>

> On another note, has anyone had a difficult time explaining to

loved

> ones why you are tired all of the time and lack the energy that you

> used to have? (And sleep more than ususal more often than not?)

>

>

[Guest guest]

Hi ,

It is a good thing that you are going back on your BP meds. It is actually very

dangerous to just stop BP meds without the guidance of your doctor. As you

found out, there can be a rebound effect where your BP increases, and high BP is

not a good thing for your kidneys.

As far as helping your loved ones understand IgAN, would they be open to looking

through the www.igan.ca website? It might help to see in writing that the

fatigue is indeed a part of IgAN.

In a message dated 9/28/2004 1:39:02 AM Eastern Daylight Time, " zeekie43 "

writes:

>Hello!

>

>Thank you to everyone who helped me out with thoughts about the ACE

>inhibitors. Well the renegade side of me took over and I stopped

>taking the meds. Well two days after that move I was in agony with a

>BP of 130/119.....so I'll continue to take it until I can see my doc

>and get it changed. :/

>

>On another note, has anyone had a difficult time explaining to loved

>ones why you are tired all of the time and lack the energy that you

>used to have? (And sleep more than ususal more often than not?)

>

>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

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

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

[Guest guest]

Hi ,

I think you hit the nail on the head when you said we look healthy on the

outside, and that makes it hard for others to accept that we do have a chronic

illness. It is not like a broken arm or something that is apparent and easily

seen.

Even as my Neph told me he predicted I would need a transplant in the next 3-6

months, in the next breath he said it is hard for even him as my Nephrologist to

tell me that when I look so healthy!

In a message dated 9/28/2004 9:39:13 AM Eastern Daylight Time, " keyofa1 "

writes:

>Hi :

>

>You are in good company here when it comes to family not

>understanding.  This subject seems to come up often and I don't think

>any of us have found a solution for explaing IGaN to our families.  I

>often feel if they cannot see anything physically wrong with you,

>then you are fine.  As we all know this is not the situation.  

>

>Since my diagnosis in May 2004, my mother has gone to every neph

>appointment with me.  She keeps tight tabs on all my labs and thinks

>as long as everything continues to improve, I'm going to beat this

>thing.  Only problem is that my creatnine still varies between 2.5

>and 3.0 and my proteinuria is 3+g.  When I was first diagnosed my

>creatnine was 5.2 and protenuria was 3+g.  So, there are some

>improvements, but it appears the IGaN is still very active.

>

>I hope this helps some.  Hang in there.  We all know and understand

>what you're going through.  This is a great place to get support and

>imformation, which is what we all need.

>

>

>

>

>> Hello!

>>

>> Thank you to everyone who helped me out with thoughts about the ACE

>> inhibitors. Well the renegade side of me took over and I stopped

>> taking the meds. Well two days after that move I was in agony with

>a

>> BP of 130/119.....so I'll continue to take it until I can see my

>doc

>> and get it changed. :/

>>

>> On another note, has anyone had a difficult time explaining to

>loved

>> ones why you are tired all of the time and lack the energy that you

>> used to have? (And sleep more than ususal more often than not?)

>>

>>

>

>

>

>

>To edit your settings for the group, go to our Yahoo Group

>home page:

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

>

>To unsubcribe via email,

>iga-nephropathy-unsubscribe

>Visit our companion website at www.igan.ca. The site is entirely supported by

donations. If you would like to help, go to:

>http://www.igan.ca/id62.htm

>

>Thank you

>

[Guest guest]

I'm glad we could help with the b/p meds issue.

As for helping your family understand....I find honesty and education to

be the best policy. When I'm tired I tell them, when they ask why I explain

it and then point them to websites where they can read it for themselves.

My husband and my kids (age 6 and 10) have come to nearly every neph

appointment with me since day one. Since my disease affects all of us (due

to fatigue and pain getting in the way of me doing things regularly) I felt

it was important to involve my entire family in the process. It's helped

them to better comprehend why I feel the way I feel. For example my husband

reminds me now to not schedule anything important the week of my neph

appointments since any change in medications is going to mess with me for at

least a week. My kids (we homeschool) now plan to work independently the

week of my neph appointment just in case I have a medication change that

will leave me laid up on the couch most of the day. It takes some adapting

on everyone's part but it can be done and done well if you all work together

for the betterment of everyone involved.

It has taken me nearly a year since my diagnosis to just open up to my

husband and let him know how I'm feeling when I get to feeling really bad.

I think as women we try to play the strong wife and mother but in reality we

are melting inside, the only way to keep our sanity is by letting those

around us know about it so they can support us the way we support them. I

also believe it's the same for men, they don't want to show weakness in the

face of disease so they suffer in silence when those around them would offer

a shoulder in a heartbeat.

Hang in there and remember you aren't alone.

Amy G.

Thank you to all who replied

> Hello!

>

> Thank you to everyone who helped me out with thoughts about the ACE

> inhibitors. Well the renegade side of me took over and I stopped

> taking the meds. Well two days after that move I was in agony with a

> BP of 130/119.....so I'll continue to take it until I can see my doc

> and get it changed. :/

>

> On another note, has anyone had a difficult time explaining to loved

> ones why you are tired all of the time and lack the energy that you

> used to have? (And sleep more than ususal more often than not?)

>

>

>

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

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

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

[Guest guest]

> Hello!

Hi ,

I think explaining the fatigue is the hardest part-my husband is

very understanding. I find that I am tired and don't want to even

get up and fix something to drink sometimes when I'm wiped out or

clean and then I get a burst of energy-so it looks like I am just

lazy at times. I think I am harder on myself sometimes.

>

> Thank you to everyone who helped me out with thoughts about the

ACE

> inhibitors. Well the renegade side of me took over and I stopped

> taking the meds. Well two days after that move I was in agony with

a

> BP of 130/119.....so I'll continue to take it until I can see my

doc

> and get it changed. :/

>

> On another note, has anyone had a difficult time explaining to

loved

> ones why you are tired all of the time and lack the energy that

you

> used to have? (And sleep more than ususal more often than not?)

>

>