:(........a few things i lost

[migaguiar]

(I will always be his caregiver, even thought I am the patient).

That is a deep statement Paris.

Sometimes i wonder if i have this disease because i can stand the burden and others could not?

[The Wife]

TW, sometimes it is so much easier for us to tell people who are going thru the same thing, than it is to tell our spouse. I try not to load more worries on him than he already has.  I am still in caregive/wife mode for him, trying to shelter him from some of the realities.  (I will always be his caregiver, even thought I am the patient).  I appreciate you acknowledging that a caregiver can learn from the patients thoughts he posts in low moments or times of need.

You have no idea how much all of you have helped me to understand.  Yes, the patient sometimes keeps things away from the spouse/caregiver so as not to burden us, but in order to be of more help, we need to know. 

[monrein]

I have worked hard to get my head around this concept and I hope I can explain it.  I've been trying for a long time now to focus less on having the things I want and focus more on wanting the things I have.  It has been quite freeing in fact and when I get caught up in some destructive patterns like grieving what I've lost or what might have been I give myself a time limit (30 minutes is usually enough) to feel the utter wretchedness of it all and then I force myself to change direction.  That involves thinking about all the things I still have and that I'm grateful for and anything else that I might have gained like greater compassion to give but one example.  I find that I get better at this the more I practice and I'm amazed how it has helped to distill what is really important to me.  Now obviously I don't want ESRD but I don't want my anger at it to obliterate the things I still have in my life that I do want.  So I try to befriend it (which is different than wanting it but since I have it anyway I don't want to give it any more power over me) by trying to not let it stop me from laughing, loving etc. 

[migaguiar]

Monrein, then ask your friend to take a break and go vacation!!
Dont i wish it was that easy.

[twirl]

I have lost the chance to go to a banquet and see if my son gets scholarship money, he had to be nominated to get to go.
The tickets are 40.00 each and my husband just sent in 80.00.
I just wanted to be there. The doc said I have to get this surgery now, my numbers are high.
He said it is like being bittern by a black widow spider, it deletes your calcium.
They want me to have time to get well before they do anything else to me.

[monrein]

So do I mig so do I.  I also keep hoping I don't get caught in "friendly fire".  Wouldn't it be nice if we could take vacation a also from bills, annoying relatives, nosy or noisy neighbours and any other crap.
PS I like your posts and how you express your feelings.

Twirl, that's a bummer about missing the banquet.  We all want you to get well.

[spacezombie]

When I got sick again, I had to move from Seattle back to my hometown in California. So I lost my friends and my life in Seattle.

I used to feel as though ESRD had kept me from my full potential as far as finishing school or a career was concerned. But I went back to school when I started dialysis for the second time. I'm slowly plugging away but I have straight As. I'm trying not to let this illness dictate what I can and can't achieve in my life. So it has slowed me up a bit, but I haven't lost that.

I do feel as though I have gained some things by having this illness. I feel more compassion for those that suffer from any ailment. I'm able to better appreciate the everyday experiences in life. I'm strong. I can laugh and make jokes even when life is frightening. If I hadn't gotten sick again, I wouldn't have moved back to California and would not have met my current boyfriend of four years, whom I love so, so much. I'd have to say I love him more than I loved my kidney so it all worked out (plus he is giving me one of his kidneys). 

[migaguiar]

Monrein,
my grandmother has hip pain that run downs her spine to her toes. It has bothered her quite some time now. I feel sad for her but it angers me when she calls it "my pain." Its as if she has a little friend with her. She is not aware that she is giving it life by acknowledging it so much. I understand that you refer to it as a friend to try a back door approach in overcoming it but my grandmother has totally given up as if her pain was 1st then she is 2nd.

I try to explain to her what she is doing but because of her age she doesnt seem or at least does not want to understand.
Now, i just listen to her and her friend and dont say a word about it.
Some things are just the way are.

[kitkatz]

Did You ever have one I'm off kitkatz, may still have that big stick, plus it hurts

Yes and now I have a smiley just for you Kevno! 

[kevno]

Just a bit more serious. A lot of good friends who have been renal patients. I miss them all. But life must go on. Thats one reason now, I do not allow myself to get to close to any patient been hurt to many times. I am a lot closer to the staff on the unit than the patients.

 

[meadowlandsnj]

I have worked hard to get my head around this concept and I hope I can explain it.  I've been trying for a long time now to focus less on having the things I want and focus more on wanting the things I have.  It has been quite freeing in fact and when I get caught up in some destructive patterns like grieving what I've lost or what might have been I give myself a time limit (30 minutes is usually enough) to feel the utter wretchedness of it all and then I force myself to change direction.  That involves thinking about all the things I still have and that I'm grateful for and anything else that I might have gained like greater compassion to give but one example.  I find that I get better at this the more I practice and I'm amazed how it has helped to distill what is really important to me.  Now obviously I don't want ESRD but I don't want my anger at it to obliterate the things I still have in my life that I do want.  So I try to befriend it (which is different than wanting it but since I have it anyway I don't want to give it any more power over me) by trying to not let it stop me from laughing, loving etc. 

That's very wise and good advice for everyone (at least it is for me). 

[Claudia30]

I have lost and gained so much by being on dialysis and waiting for a transplant. I lost three years of my life when I first started dialysis. I was so so sick on hemo and could not get out of bed and when I did it was usually to  . I knew that I would have to get off my ass soon enough and several months ago I decided to go back to school. It’s nothing big but I’m pretty proud that I am starting a new career and doing dialysis at the same time. Life gets pretty boring when all you do everyday is dialysis and school or work. I was a teacher for 3 years and have my master's degree in education, but I decided not to go back to that field cause it was just too stressful and i was emotionally drained.

I have gained perspective of people now, and let things go much more easily. I agree with the statement that there is a reason for everything that happens in our life. I am lucky to be able to do dialysis the way I want to, to be relatively healthy. I am able to understand people and be more empathetic to their situations in life. I appreciate the ocean and sunsets and nature a lot more than before. I am lucky to be alive!! To be able to walk, talk, see, hear. I'm lucky to have a roof over my head and food on my table and clothes on my back. I'm lucky to live in the USA ace where I can have my own feelings and thoughts and then be able to express those feelings and thoughts. 

What I have lost - relationships with both sexes because I was too scared (and still am at times) to get close to someone. Everyone I get close to dies or moves away or stops talking to me. I have some (ok, a lot) of trust issues regarding having a relationship with a guy as I had one years ago that cheated on me and we were engaged!.  But at the same time I am thankful to have learned about it before we got married. I believe that everyone who comes into your life comes in for a reason. For example, after my mom died i was taken advantage of by someone, but if i think about it she helped me deal with my mother's death and the first holidays without her or any family.

I have to say I am a lot more thankful for the experiences I have had, more often than not. I used to be so angry and yes at times I get angry but nothing like I was. It is awesome to know that there are others out there who are going through this and we have each other for support.    This is such a wonderful family to be a part of.

[ODAT]

You have no idea how much all of you have helped me to understand.  Yes, the patient sometimes keeps things away from the spouse/caregiver so as not to burden us, but in order to be of more help, we need to know. 

Yes, please tell us. My dad never did and I always felt that we could have helped him sooner, and better. Even though we asked and asked, he always said he was fine.

Making the most out of your life, whether you are ill or not, is a challenge. For so long I just made up excuse after excuse why I didn't exercise that day. Now I realize that it would be so wasteful not to make myself healthier. I see what runs in the family, diabetes and arthiritis just to name a few and those are things that I can prevent/postpone by diet and exercise. Then of course there is the emotional state. I see people waste what they have, a family, house and job - by just bitching every day about stuff that doesn't matter. While they are bitching, the moments are slipping away.

migaguiar you've brought a good point to light for all of us. The most important thing to bring to yourself is balance. 

[MyssAnne]

I don't have too much to add to this, other than I found myself agreeing with everyone's post, the lost time, the lost opportunities,
the regrets, the loneliness. And also the strength of character, compassion, and the ability to just let go what is not essential.

It's a mixed bag.  On the whole, I agree with the post who talked about feeling more 'themselves.'  I understand that all too well.
I now feel like the person I am meant to be. 

[migaguiar]

Wow!!
You guys are awesome!!
Through unfortunate circumstances we've become real people.

And for those people (healthy) who dont know how good they have it just be patient with them. They just dont have that capacity.
It will come for them.

[Bajanne]

This is my first time weighing in on this very meaningful thread.   
With dialysis does come lots of loss. I lost my job.  Though I didn't lose friends or family, I lost total control of my days and hours.  Even now, it grates a bit when I reach to the unit at 10.30 and do not get on until 12.00, when I came early especially so I could leave to do something I needed to do.  and the nurses seem to think that because dialysis is important, I don't have any other life and I should just be grateful and accept it like that.
However, I am generally a quite contented person.  I have been through other health challenges and the F's have seen me through - my faith, my family and my friends.  I underwent a mastectomy 15 years ago this December when my daughter was 10 and i am grateful that I have seen her grow up.
The head of department at my school always told me she doesn't understand how I am always so upbeat.  She says "there you are, with one foot in the grave and the other outside tapdancing!'  I don't think it is denial; it is that I appreciate things one day at a time.
One thing I have gained, though, is my wonderful IHD family. 

[Sunny]

The things I've lost add up to many pages. It took years to finally accept things for what they are and move on from there.
No point in dwelling on it. I'm still trying to figure out my future, though. There is so much we all have had to give up due to
kidney disease. We are all very brave people for allowing ourselves to get on with life anyway. I don't think just anybody could
do it. There are plenty who can't, we just don't know of them. We are in this together. Thanks for this Web Site.

[paris]

This has been an very interesting thread.  It has made us really look at ourselves and it seems for most of us, we are ok with who we are now. 

Bajanne, I always look for your posts because you are so calm, soothing and loving.  Your love of your "F" is always evident.   

[annabanana]

Thank you for this thread. Sluff suggested in another thread that I copy and print some of the threads on this site for my husband, who is having a hard time right now. This thread is deeply moving and I am grateful for all your words. I'm going to print it for him.

[petey]

Marvin and I see this whole thing differently.  While I have a mental list of all the things he has "lost" due to ESRD, he only counts the things he has gained.  (He's the type who ALWAYS sees the glass as half-full and not half-empty.)

Marvin said these are things he's gained in the last 13 years since he's been on dialysis:
--26 more birthdays (13 his and 13 mine)
--13 more anniversaries (we'll celebrate #22 this summer!)
--4,805 more days of life
--4,805 more sunrises
--4,805 more sunsets
--13 more baseball seasons
--8 more great-nieces and great-nephews (the latest was born six weeks ago -- we now have 36 nieces and nephews all total!)
--our first four-legged "child" -- Hop-Sing, a 5-year-old Pug/Peke mix
--our second four-legged "child" -- Mandy May, a seven-week-old German Shepherd
--hundreds of new friends (dialysis patients and "regular" friends, too)
--the chance to coach in four Dixie Youth Baseball state tournaments (runners-up in the six-to-eight-year old category twice)
--millions of smiles
--millions of laughs


When I look at his list of what he's gained, my list of what he's lost doesn't seem so important any more.

[JasonEb]

All these beautiful sentiments and the only thing I can think of is...

"I lost the button to my shorts the other day..."

But seriously...

The things I've gained have far outweighed the minor (well, minor to me...your mileage might vary) things I've lost.

Plus, I'm determined to stay alive at least until the Portland Trailblazers win another NBA title, so I'll probably live longer than Methuselah!

~Jason E.

[Lori1851]

I think my son could totally relate to you and others. Dustin is an awesome  mechanic. He took 2 yrs of Vocational training and passed  the ASE test and was the only one is his class that did. That was his Junior yr in high school. People call and ask him questions when they are havin car trouble. Dustin can usually  pinpoint the problem. I tell Dustin that right now his life may be on hold BUT I truely believe he will get a transplant and go for his dreams. Dustin also is an avid artist. He loves drawing cars and trucks, honest to goodness they look like they could drive off the paper. Keep your Dreams alive hon!!! They will one day by the grace of God come true.

Lori/Indiana mom to Dustin 22 on dialysis due to FSGS

[Sunny]

Dustin sounds wonderful. You "done good" with him.
He's doing something he likes and the kidney disease isn't holding him back.