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Author Topic: I just dont have the same priorites...  (Read 2667 times)
migaguiar
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Step back. Im full of toxins.

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« on: April 28, 2008, 11:24:09 AM »

I love my gf, her kids, my mom, my g-ma.....etc.....
but i just dont have the same priorites as them.

I dont mean to be selfish but no, im not in a hurry to plan a trip to Hawaii.
No, I really dont want to drive my mom and g-ma to the casinos.
No, i dont feel like calling UCSF right now.
Yes, i know im not suppose to shower but i am anyways......
no, miss nurse i didnt ask your opinion.......

I want to go walk Lake Elizabeth in the mornings.
I want to listen to AM radio without being bothered.
I want to eat when i feel like it and not have to wait for everybody.

I know its wrong but right now being selfish is the best thing for me.
I dont want to be an a-hole and cut off the people who love me but i wish they would understand
that right now i have "other" things to deal with and would give me more understanding and a little bit of room.

I even feel guilty that im asking for this.........
Does anyone else have this problem?
And how do you deal with it? :-\
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"All we are is dust in the wind," dude.
Bill and Ted's Excellent Adventure

http://ihaveesrd.blogspot.com/
Alports @ age 19 hemo in center 4 months
20 paternal kidney transplant 14 years
Present 1 1/2 yr PD
4 month in center
now 6 months @ home NxStage Daily
Soon Nocturnal!
monrein
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Might as well smile

« Reply #1 on: April 28, 2008, 11:36:47 AM »

Personally I think it's normal cause there's so much we CAN'T do and so much we HAVE to do that anything else feels like gravy and should be completely what we WANT to do.  I think know exactly what you mean.  The other thing is that most people can't know what they haven't experienced so how can they know how really tired we are.  I feel a little guilty for all the times when I was young and it drove me nuts when my grandmother would say she was too tired to do something I wanted her to, fun stuff, so why the big deal.  Finally I get it. 
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Pyelonephritis (began at 8 mos old)
Home haemo 1980-1985 (self-cannulated with 15 gauge sharps)
Cadaveric transplant 1985
New upper-arm fistula April 2008
Uldall-Cook catheter inserted May 2008
Haemo-dialysis, self care unit June 2008
(2 1/2 hours X 5 weekly)
Self-cannulated, 15 gauge blunts, buttonholes.
Living donor transplant (sister-in law Kathy) Feb. 2009
First failed kidney transplant removed Apr.  2009
Second trx doing great so far...all lab values in normal ranges
thegrammalady
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« Reply #2 on: April 28, 2008, 12:02:22 PM »

i think what people don't understand, especially our families (it's called denial) is we are every bit as sick as someone with cancer (just in a different way) i often over do because i don't think of myself as sick. (we won't talk about the first 3 months of this year) i don't think you are being selfish at all, but you probably won't convince your family of that.
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s
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If you can smile when things go wrong, you have someone in mind to blame.

Lead me not into temptation, I can find it myself.

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E.T.
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« Reply #3 on: April 28, 2008, 12:59:54 PM »

In any case, what's wrong with being selfish when you have to take care of your self. Even on airplanes they always say "Put the oxygen mask on your own face first"
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spacezombie
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Melissa: ESRD since 1992, transplant June 10, 2008

« Reply #4 on: April 28, 2008, 02:45:54 PM »

Oh man, I so know how you feel. I told my boyfriend the other day that I wish I could run away to a deserted island so everyone would get off my "grill." I just want some time to relax!
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I have Alport's Syndrome. My kidneys failed when I was 14 and I was on PD for five years before receiving a kidney transplant from my mother. That kidney failed in 2004 and I've been back on PD ever since. I am undergoing treatment for my high antibodies at Cedars-Sinai medical center. I had a kidney transplant on June 10, 2008. My boyfriend was the donor.
paris
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« Reply #5 on: April 28, 2008, 03:16:58 PM »

What a great post!  I think many of us feel like you do.  Some days I just want to be left alone.  It is hard to keep up with conversations, let alone anything else.  I put up a good front and then just collapse when I am alone.  And stop trying to encourage me to go places, I may just want to stay home.  Kitkatz always says " just because I can, doesn't mean I should".   It is ok to be selfish.  I never have been selfish, but now need to do what makes me happy.  And yes, most of the people around us are in denial.   Come here to rant and vent---you are in good company :thumbup;   Again, you wrote an excellent post :2thumbsup;
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It's not what you gather, but what you scatter that tells what kind of life you have lived.
twirl
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« Reply #6 on: April 28, 2008, 03:37:48 PM »

no, I did not feel like going to the all day A&M football spring game
no, I do not want to go to church, preacher is long winded and I have to hear everyone is praying for me, well pray harder, it ain't working
no, I do not want to go eat out, please take the kids and go, I will not mind
no, I do not want to have the youth over for an all night swimming party, unless I can stay in my room
no, I really do have a headache
no, I am not sleeping, I'm contemplating
not as active as I was----kidney failure is a bitch
I am a different person as far as energy levels
chill and let me chill
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The Wife
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« Reply #7 on: April 28, 2008, 08:01:58 PM »

I have found that even though we tell people what this is like, SOME just never seem to get it.  Do what you need to do to take care of yourself and don't worry about the demands of others.  One day, the light bulb might just click on. 


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migaguiar
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Step back. Im full of toxins.

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« Reply #8 on: April 29, 2008, 12:10:10 PM »

Its still difficult saying no because my mom pays half my rent and my gf, along with putting up with my disease, she takes care of me. So, i do my best to reach a middle ground. I come up short for obvious reasons.

I know how i am healthy. Its just right now even arguing is draining for me!

I got sick while in a relationship. If i had known i was going to be sick sooner rather than later I would have stayed single.

So much energy is required to maintain a relationship, household chores, family that every bit we use is taken away from our main goal and that is good health.

I guess if i were to write a list of positives and negatives the positives will outweigh so i'm probably just
ranting :rant;
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"All we are is dust in the wind," dude.
Bill and Ted's Excellent Adventure

http://ihaveesrd.blogspot.com/
Alports @ age 19 hemo in center 4 months
20 paternal kidney transplant 14 years
Present 1 1/2 yr PD
4 month in center
now 6 months @ home NxStage Daily
Soon Nocturnal!
Stacy Without An E
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« Reply #9 on: April 29, 2008, 01:16:11 PM »

I know exactly what you're referring to, for it has changed my priorities as well.  I had a chance to apply and pursue the management position here at my work and after some long soul searching, I backed off.  If I were five years younger and still had my transplant, I would have been gung-ho about it and pursued it relentlessly.  I came to the conclusion that I'm right where I should be considering my condition.  More salary combined with increased stress didn't seem alluring to me.  I'm just too damn tired to put up with the extra crap that managers have to deal with.

Whether you realize it or not, Dialysis will slowly teach you that little moments in life should be cherished, for some days, that's all we have to look forward to.
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Stacy Without An E

1st Kidney Transplant: May 1983
2nd Kidney Transplant: January 1996
3rd Kidney Transplant: Any day now.

The Adventures of Stacy Without An E
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Dialysis.  Two needles.  One machine.  No compassion.
kitkatz
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« Reply #10 on: April 29, 2008, 02:59:21 PM »

I think one has to begin to cherish things as you go through life with a chronic illness.  That is why people need to back off and "get off your grill." ( I love that statement!)  The things that become important to me are put first because Lord knows if I get to do them ever again.  You just have to do what is right for you.
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lifenotonthelist.com

Ivanova: "Old Egyptian blessing: May God stand between you and harm in all the empty places you must walk." Babylon 5

Remember your present situation is not your final destination.

Take it one day, one hour, one minute, one second at a time.

"If we don't find a way out of this soon, I'm gonna lose it. Lose it... It means go crazy, nuts, insane, bonzo, no longer in possession of ones faculties, three fries short of a Happy Meal, wacko!" Jack O'Neill - SG-1
Sunny
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Sunny

« Reply #11 on: April 29, 2008, 07:41:26 PM »

I really feel for you on this one.
It's not easy having Kidney disease and then expect your loved ones to understand what it is like for you.
They try to understand in the beginning, and may be very sympathetic for a while. But then It becomes the "life goes on" attitude
and loved ones may lose their ability to sympathize when they realize you really are going to live after all. So they forget that your
abilities and strength diminishes yet still expect you to be the same person. I think you have to just come out and give it to them straight
so they know how you are feeling. Otherwise, they may just think things are just like they used to be, before things were difficult for you.
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Sunny, 49 year old female
 pre-dialysis with GoodPastures
migaguiar
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Step back. Im full of toxins.

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« Reply #12 on: April 30, 2008, 10:55:52 AM »

 :thumbup;
Thanks for the responses.
Its comforting to know that i shouldnt feel guilty.
However, i dont think things will change as fas as people understanding my situation.
How could they?

I will have to fight more often to get my point across. :sir ken; haha great icon.
 
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"All we are is dust in the wind," dude.
Bill and Ted's Excellent Adventure

http://ihaveesrd.blogspot.com/
Alports @ age 19 hemo in center 4 months
20 paternal kidney transplant 14 years
Present 1 1/2 yr PD
4 month in center
now 6 months @ home NxStage Daily
Soon Nocturnal!
G-Ma
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« Reply #13 on: May 02, 2008, 09:10:54 PM »

Yeah Mig....go ahead with selfish...This was my first week of selfish..my sons and their wives have been pushing me to be selfish and I was trying to be strong for all of us and had a meltdown last week so am finally listening and it feels so good.  I felt so emotionally good this week.  Now I'll have to work on getting my sisters to understand how I feel...grrrr.
G Ma
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Lost vision due to retinopathy 12/2005, 30 Laser Surg 2006
ESRD diagnosed 12/2006
03/2007 Fantastic Eye Surgeon in ND got my sight back and implanted lenses in both eyes, great distance & low reading.
Gortex 4/07.  Started dialysis in ND 5/4/2007
Gortex clotted off Thanksgiving Week of 2007, was unclotted and promptly clotted off 1/2 hour later so Permacath Rt chest.
3/2008 move to NC to be close to children.
2 Step fistula, 05/08-elevated 06/08, using mid August.
Aug 5, 08, trained NxStage and Home on 9/3/2008.
Fistulagram 09/2008. In hospital 10/30/08, Bowel Obstruction.
Back to RAI-Latrobe In Center. No home hemo at this time.
GOD IS GOOD
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