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

[migaguiar]

Well.......  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.

[twirl]

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

[Sluff]

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.

[monrein]

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).

[kevno]

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.

[paris]

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

[Stacy Without An E]

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.

[twirl]

stacy without an e                                 well said

[2_DallasCowboys]

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

[thegrammalady]

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.

[stauffenberg]

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.

[monrein]

That was beautifully stated S. I found it very moving.

[Sluff]

This is a beautiful thread. Great positive and understanding thoughts and comments.

[st789]

I understand.

Love all of you.

[Claudia30]

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  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.

[paris]

Stauffenberg, excellent post      Sluff is right, this is a good thread.

[kellyt]

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?"   

[migaguiar]

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.
 

[paris]

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

Migaguiar,  we DO get it!   And we love reading your posts!

[kellyt]

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

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?       

[kitkatz]

My mind is one of the little things I have lost.

[thegrammalady]

don't worry kitkatz, i lost mine long before my kidneys went.   

[kevno]

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

[The Wife]

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.

[paris]

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.