Re: Anyone else extremly tired?

September 27, 2005

Just a few weeks before my son's transplant, he went to a beerfest

with a group of friends and had a miserable time. He was tired and

mildly nauseous all the time and felt particularly bad walking around

in the sun. He didn't feel like drinking the beer and it just wasn't

any fun. It was the first time he was willing to admit how bad he

really felt. Before that he convinced himself that he felt " not great

but OK. "

Betsy

> Amy,

>

> This was the first year I didn't go with my family to the " Sandwich

> Fair " a big fair that comes to town every year. I just knew that I

> wouldn't have the energy to do all that walking at 8:00 at night!

> My husband said it was a good thing I didn't go because the walk

> from the car alone was so long, but needless to say, I stayed at

> home and cried all night, because that was the first time I felt

> like I couldn't do something I normally could. That was the first

> time, I truly felt " sick " . Does that make sense?

>

> Jill G.

>

September 27, 2005

Hi Jill,

I'm sorry to see that you have such level of fatigue! Before I was on

aranesp, I had such extreme fatigue that if I wasn't working, I was

sleeping. I still wonder how I managed through the workday. I

remember thinking in my weakest, darkest moments that 'it's almost

not worth taking this breath'. silly thinking of course, but man it was so

exhausting before.

I'm surprised to see them drop your aranesp dose! Is there any

particular reason why they need to do this, despite your level of fatigue?

I didn't get the acid reflux, however, I was " pleasantly surprised " with

gout one morning. I couldn't go to work for two days, until I took the

meds to deal with it. Now I have to learn to avoid shellfish and not eat

so much beef.

Sophia

> Hey guys, I'm back for a few days, they called me into work so I

have

> time to get on-line. I have been so tired lately. I have been taking

> 2 hour naps every afternoon just to get thru to bedtime. It is so

> depressing, I feel like okay, this is it, this is how my life is going

> to be and the fact that this will probably get worse before better is

> really upsetting. Every time they drop my aranesp dose I can't

handle

> it, this time is the worst. I hope that next month at my appointment

> he will realize I need an increase again. Just wondering if anyone

> else is gets really tired. Oh yeah, one more pleasant surprise, I

> just started getting acid reflux. I have never had that in my life.

> I swear all the meds must be eating away at my stomach lining. I've

> just been dealing with it because the thought of taking one more

> pill...although I'm not sure how much longer I can stand it. Thanks

> for letting me vent.

>

> Jill G.

September 27, 2005

Amy,

I like how you explained " the new normal " . I certainly didn't see things

from this perspective...I'm still feeling rather incredulous and a little

bitter being close to ESRD and not being able to have kids right now,

unlike a LOT of my colleagues who are currently pregnant. But this

way of looking at things...I like it!! : )

Sophia

....It was hard to come to terms with the fact that " this is how my life

would be forever " but my husband pointed out that perhaps we were

just living in the wrong place and we needed to, say, move to Mexico

where a siesta every afternoon was the normal way people live. I told

him I would start learning how to speak Spanish. ;-) It's all about

learning to live within your new normal....think of it like this 'you have

just moved to a new country with all new customs and you will be living

like this for a long time' you either get used to the new customs or you

struggle the entire time you live there.

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