I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: migaguiar on April 30, 2008, 11:56:39 AM
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Well....... :yahoo; its that time again,
Im sitting here doing dialysis and typing with one hand.
I wanted to share a post from my blog that i typed just a bit earlier today.
The blog has helped me unload alot and at the same time it helps get some points across to my family and friends and those who are ignorantly blesseed about esrd.
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Well people dont realize the things that are associated with kidney disease or sicknesses as a matter of fact.
For example Im a decent artist. Ive been able to draw since I can remember. That gene runs in my family. Half my relatives can draw. I really do take that gift for granted and never draw or practice it. I suppose its because i never had to put effort into it.
Anyhow, I can draw and you wouldnt know about it.
In the same way you wouldnt know that i stopped growing when i was 16.
Yes, 16. I got short changed of 5 years of growth. I could have been, maybe, 6ft 2inches or more!
Doesnt that suck? To me it sucks.
Im not as sharp as I used to be. By that i mean my brain sometimes feels like its running in mud.
Im not less intelligent Im just not as fast. Does that make sense? Its like having to think when youve had insufficient sleep the night before. It just makes it more difficult. I guess thats not as big a deal as not growing because its not like i was Einstein before. HaHa. :)
I could easily go on but my point is......Its not what you see when you look at me and others like me but its about the TOTAL package that is lost. Its not just my kidney's that are gone its the thing i had and could have done.
We are dealing with alot more than you think.
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I hope you like it and im sure many of you understand.
I could have gone with a long LIST of things but i'll save that for other blogs. :2thumbsup;
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the thing I had and could of done
this saddens me, yet it is so true
I was not finished being the me I used to be
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When it comes from the heart it means a lot. Most people just go on with their lives and never stop to think what they would do if they were to come down with an illness or have a debilitating injury. I've always said that a lot of people are only a heart attack away from bankruptcy.
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Have you ever thought about becoming an artist this point? I mean start using your gift now. I wish I could draw and paint. As for being tall, I hear ya (I'm only 5'2" but I feel a lot taller) but I kknow it's easier being a short woman. On the other hand tall men often have terrible trouble with their backs so maybe that's something you won't have to deal with. Gotta squeeze those lemons (you know if life gives you lemons make lemonade).
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Well said Sluff, I have no idea what a well person feels like. Plus I do not care. I do think myself as being well, just carry on at home and out and about in town as if nothing is wrong with me. Only my friends and family know. I let nobody else in my life. If you let yourself feel ill it will make you feel a lot worse. TRY! and I know for some renal patients this is very hard to do. (I have Been at this Renal thing since I was six years old) THINK POSITIVE! With thinking positive i have saved my leg. I had the date for it to be amputated. But said NO. Think about the things you can still do, not what you could have done.
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Good words from all of you. My sister says that I make her look at the good things in her life instead of focusing on the bad. Life goes by so fast and I want to appreciate what I have. I come here and complain and then let it go. This is who I am now. Not really the person I thought I would be at this point in my life--but this is it. Migaguiar- can you do sketching or pastels while on dialysis? I think this would be a good time to rediscover the artist inside. We would love to see something you have done. Also, you blog post was very good. Well said :thumbup;
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I've lost a step or two also. Quick witted and sharp has given way to stammering and sluggish.
I've lost the confidence a healthy kidney afforded me.
I've lost the will to give a damn sometimes.
I've lost many, many restful nights.
I've lost the fire in my belly that once burned brightly with ambition.
I've lost my taste for relationships. I can't take the look on a woman's face when she sees my access arm for the first time.
Conversely, and surprisingly, I've also managed to gain a few aspects to my life.
I've gained massive amounts of patience due to dealing with two to three hour highly boring Dialysis treatments.
I've gained an appreciation for the minor moments in life. Sunsets & a tall, cool glass of root beer are heavenly.
I've gained more experience in my writing from blogging about my experiences.
I've gained a tolerance for pain I never thought I would achieve in my lifetime.
I've gained an inner strength I never knew existed.
I've gained the ability to allow minor frustrations to fall off my back without another thought.
I've gained the knowledge that life should never be taken for granted.
Thank you and good night.
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stacy without an e well said :waving;
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I think all of the replies, and also
the original poster, sure did hit the
nail dead on in the head on this one
Anne
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Have you ever thought about becoming an artist this point? I mean start using your gift now. I wish I could draw and paint. As for being tall, I hear ya (I'm only 5'2" but I feel a lot taller) but I kknow it's easier being a short woman. On the other hand tall men often have terrible trouble with their backs so maybe that's something you won't have to deal with. Gotta squeeze those lemons (you know if life gives you lemons make lemonade).
i'm quite tall enough thank you very much (5' 3") my feet reach the ground.
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You have made an excellent point, Migagular. What people often fail to realize when they look at all the things sick people have lost is that these losses generate a whole which is greater than the sum of its parts. Its not just the time lost on dialysis; the missing growth; the lack of the ability to be spontaneous and free; the pathological relationship that starts to develop towards food and drink; the frustrated ambitions, etc., but it is the enormous resonance of regret and sadness that all these experiences taken together generate. It is like being a ghost looking in at the carefree, happy, living people all around you and wondering what it must be like to be them, without even being able to imagine it.
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That was beautifully stated S. I found it very moving.
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This is a beautiful thread. Great positive and understanding thoughts and comments.
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I understand.
Love all of you.
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I've lost a step or two also. Quick witted and sharp has given way to stammering and sluggish.
I've lost the confidence a healthy kidney afforded me.
I've lost the will to give a damn sometimes.
I've lost many, many restful nights.
I've lost the fire in my belly that once burned brightly with ambition.
I've lost my taste for relationships. I can't take the look on a woman's face when she sees my access arm for the first time.
Conversely, and surprisingly, I've also managed to gain a few aspects to my life.
I've gained massive amounts of patience due to dealing with two to three hour highly boring Dialysis treatments.
I've gained an appreciation for the minor moments in life. Sunsets & a tall, cool glass of root beer are heavenly.
I've gained more experience in my writing from blogging about my experiences.
I've gained a tolerance for pain I never thought I would achieve in my lifetime.
I've gained an inner strength I never knew existed.
I've gained the ability to allow minor frustrations to fall off my back without another thought.
I've gained the knowledge that life should never be taken for granted.
Thank you and good night.
Well said! I have to agree with all of that. I used to be very negative and uptight. Over the past year since I have startedi dialysis i let things go much more. I used to have bad road rage but now i let it just slide off my back and wave to people are and act like an :sir ken; I don't bother. I have enough stress in my life without adding to it. THey say that an event affects you but its your attitude that makes that event bother you or make it positive or letting you go. i choose to let it go unless it affects me directly like it is going to kill me or something. I have also started volunteering at the MSPCA and will be there every saturday to work with the dogs. By having an illness you see who your true friends are and who aren't (and that includes family). I tell people to just let things go. Its true that people look at us and don't see what we have lost and gained by our experiences. Everything hapens for a reason and we have enough stress in our lives, like i said to add to it.
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Stauffenberg, excellent post :thumbup; Sluff is right, this is a good thread.
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You have made an excellent point, Migagular. What people often fail to realize when they look at all the things sick people have lost is that these losses generate a whole which is greater than the sum of its parts. Its not just the time lost on dialysis; the missing growth; the lack of the ability to be spontaneous and free; the pathological relationship that starts to develop towards food and drink; the frustrated ambitions, etc., but it is the enormous resonance of regret and sadness that all these experiences taken together generate. It is like being a ghost looking in at the carefree, happy, living people all around you and wondering what it must be like to be them, without even being able to imagine it.
That is so true.
"The lack of the ability to be spontaneous and free" really hits home for me and I'm pre-dialysis! Going through the testing for a donor and the waiting to start dialysis is so frustrating. My husband and I are trying to plan a vacation trip, kind of a last hoo-rah if you will. But I'm torn between purchasing the cruise tickets because "what if I have to start dialysis?" and "what if my brother is accepted as a donor and the only time he can do it is during the month of June?" :banghead;
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I think my disease has caused me to mature much faster than i would have. (sick at 19. Kidney for 14years. Now 35.) And the funny thing is that i would hesitate to take all this away if i could because then i know i wouldn't be me. I am so much more inside now. I can disattach and see that arguments are insignificant. I know a beautiful girl is one who has beauty inside. Im calm and it takes alot to disturb my peace. Those are things I might not have learned........until i was much older? If at all.
I still wonder if I could have been a lousy baseball player and made millions of dollars and referred to myself in the 3rd person.
I still wish I could have lived a year in Europe but it really wasn't smart to go with my low immune system.
And i do wonder how it would have been if i never experienced all those awful migraines.
My whole purpose for my blogs and this post in particular is for people to understand the package.
I am so happy knowing that you guys get it.
:bandance;
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KellyT, go on the cruise! I spent too much time just waiting for dates---date for testing, donor testing, best time for surgery-----go and enjoy your time. Live it up and make memories. I live more for today,now, than I use to. Plan a trip and have fun. My :twocents;
Migaguiar, we DO get it! And we love reading your posts!
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KellyT, go on the cruise! I spent too much time just waiting for dates---date for testing, donor testing, best time for surgery-----go and enjoy your time. Live it up and make memories. I live more for today,now, than I use to. Plan a trip and have fun. My :twocents;
Migaguiar, we DO get it! And we love reading your posts!
I think I'm going to schedule it. If I have to start dialysis in June, what's four more days, right? :cuddle; :thx;
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My mind is one of the little things I have lost.
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don't worry kitkatz, i lost mine long before my kidneys went. :urcrazy;
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Did You ever have one :shy; I'm off kitkatz, :Kit n Stik; may still have that big stick, plus it hurts
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This is a great thread. I've book marked your blog. Thank you for sharing. It helps those of us who are caregivers to understand even more of what our spouses go through.
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I miss the "me" I use to be. Now I am learning to love the person I am now. Don't like it, but this is my life---good, bad, and ugly.
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. :cuddle;
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(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? ???
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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. :cuddle;
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.
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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.
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Monrein, then ask your friend to take a break and go vacation!! :rofl; :rofl;
Dont i wish it was that easy.
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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.
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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.
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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). 8)
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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.
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Did You ever have one :shy; I'm off kitkatz, :Kit n Stik; may still have that big stick, plus it hurts
Yes and now I have a smiley just for you Kevno! :Kit n Stik; :Kit n Stik;
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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.
:-\
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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).
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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 :puke;. 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. :2thumbsup;
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!. :Kit n Stik; 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. :grouphug; :thx; This is such a wonderful family to be a part of.
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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. :cuddle;
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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.
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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.
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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. :grouphug;
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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.
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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. :cuddle;
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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.
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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.
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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.
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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
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Dustin sounds wonderful. You "done good" with him.
He's doing something he likes and the kidney disease isn't holding him back.