What AM I turning into....?

[Padster]

I have noticed that since being diagnosed with ESRD I am becoming a different person from the cheerful, happy go lucky sort of guy that I used to be..and I don't know how to stop it. I am becoming disfigured by this disease both mentally and physically and I haven't even started dialysis yet. On the physical side, I am putting on weight due to fluid retention, and am now having to limit how much I can drink, which is sheer torture during this heat we have been having. Also, my broken hip is giving problems: my right leg has shortened slightly and I have developed an ungainly waddle. The worst part though has to be the mental disfigurement. I have become an angrier person, and have had that cheerful easy going side to my nature all but bashed out of me and replaced with what Oddball so eloquently called 'negative waves'.  In short I am turning ugly.

Just wanted to express some of my feelings today. Please don't think I am complaining because I am not. I just thought it might draw some comments and experiences from you guys.

Best wishes,
Padster

[angieskidney]

Definitely! I have noticed this in myself and as you have been seeing with some of the people here .. it seems to be a common thing .. these 'negative waves'!!

I was healthy with a transplant with my ex-boyfriend Jay when I lost the transplant and had no energy. He didn't understand and called me lazy and we started fighting a lot when we used to not. Now I am glad I have a more understanding boyfriend who is always there for me. I do get angry a lot but he keeps me pretty mellow. Infact, because with Jay I was always so angry our roommate gave me the nick name of Katie Kabo0m (yes, yes .. I know Kitkatz is called that too ) because I would be happy one minute and then explode angrily the next. And when I fight (argue) I don't like to back down.

I find I hate seeing how I am but I can't seem to change. I don't know why we are like this ... but ya .. I seem always angry and willing to start a fight about anything and so not the type to back down. Even when I should.

As for the physical side .. it was 5 years ago now but since I still had some kidney function of the failed transplant til just almost 2 years ago .. I didn't really get that until I got the Peritonitis and had to be switched to Hemo. But I had lost so much dry weight that they didn't know how much fluid I had on me. I had gotten Pneumonia and couldn't breathe because of all the fluid in my lungs.

(hmm.. did spell check and it tried saying that the word "still" should be spelled as "said" ... )

[goofynina]

Padster, i feel the same way, BUT, i still have the same heart, i still love the same, still have the same sense of humor, it's gonna take alot to take that away from me, although i had lost it when i first began Hemo,  and it took over hearing a child say that i look sad all the time to change my life around,  and it did.  I am sorry if this turns into a "positive" post and you do not agree but i am just speaking what is in me.  I know my time here on earth is very limited, everyones is.  I am not going to spend my last days, sad, miserable, depressed, that is not how i want to be remembered.  I want life to be one big party, when i go, i want dance music playing, i love to dance,  cant do it as much as i used to, but dammit, i do what i can.  There are days when i cant even get out of bed but i force myself cuz time is precious and i am going to spend all eternity lying down, so i get myself up and do what i got to do,  (or what i can do) more like it    You are not alone my friend..........

[angieskidney]

it took over hearing a child say that i look sad all the time to change my life around,  and it did. 

What steps did you take to do that? I have noticed I am not a happy person. The only one who makes me happy is my long-distance boyfriend. I don't go out anymore since I don't smoke or drink and my drink limits are 1 L anyway and all there are in my city are bars and the Casino. I mean, sure it is easier now since the bars and casino have just recently went all non-smoking, but I just don't feel like going anywhere anymore. There seems to be just no reason.

[goofynina]

The only steps i took were in my head,  i just talked to myself and convinced myself that my life was worth living, i mean something to somebody and that alone made all the difference in the world.  I dont go anywhere anymore,  i LOVE being at home, by myself, on the computer, playing games, or watching movies, hubby works long hours and i am home usually by myself alot, (unless its the days when we watch my great niece) Your life is in YOUR hands, what you do with it is YOUR decision, if you want to stay at home, go to work, go to the library, or whatever it may be it is all up to you.  I know first hand how difficult it is to find the motivation, but if you dig deep enough, you would be surprised what you find.... Good Luck.......

[angieskidney]

The only steps i took were in my head,  i just talked to myself and convinced myself that my life was worth living, i mean something to somebody and that alone made all the difference in the world.  I don't go anywhere anymore,  i LOVE being at home, by myself, on the computer, playing games, or watching movies, hubby works long hours and i am home usually by myself a lot, (unless its the days when we watch my great niece) Your life is in YOUR hands, what you do with it is YOUR decision, if you want to stay at home, go to work, go to the library, or whatever it may be it is all up to you.  I know first hand how difficult it is to find the motivation, but if you dig deep enough, you would be surprised what you find.... Good Luck.......

Thank you

I will be going back to work soon. I figure that will be good for me because I have lost a lot of muscle when I got so sick last sumer. I haven't really gained any back and that is causing some problems with my strength. Maybe going back to work will help me get that back since that means I will have to ride my bicycle to work and back.

[Bajanne]

Here is where Padster will probably barf, but I must say what has kept me level, and able to enjoy living, even with the restrictions and challenges of dialysis.  It is my ongoing relationship with a living Jesus Christ and his people on this earth.  Nothing has given more worth to my life than when I discovered that this is not a religion thing, but a life-thing, with a living Person Who is willing to reveal Himself to those who seek Him in honesty.

[kitkatz]

"Dance like noone is watching."

[Mom3]

Padster, even though you are conscious of the changes in yourself and are naturally unhappy about them I am sure you are still the same wonderful guy to the people who care about you. My son used to take Karate and be quite athletic. Now he is on a cane with delicate tendons and bones. ETC

But he is as precious to us as he ever was--maybe even more so.

Mom3

[kevno]

Padster it is normal your life as just gone a full 180. You wonder why me You remember how you used to be well, fit and never unhappy like you are now. You will come around. Most of us do. I know I had too. The first year back on haemo was very hard for me. I had already been on CAPD for 12 years. But I swore to myself I would never go back on haemo. But in the end I had no choice. I was like a bear with a sore head all that year. Even my family said I was very hard to talk too, they never knew how I was going to respond. Then in the end it was my girl friend who made me realize what a asshole I had been all that year. I now see all things in a different way. A more how to put it A happier way. Not just ME!ME!ME! and so negative, now think of the other family members, friends and most of all girl friend. Who spilt up with me because of the way I had become. But now we are back together because of the way I have gone back to being. That asshole is still there but I can control that monster now 

[Rerun]

Padster:  I like you just the way your are!   

I don't deny my feelings. I don't try to make something good out of something bad.  I'm not an opptimist and I'm not a pessimist; I am a "Realist".  People tell me "what a good attitude" I have and I say "where"!!!  I don't have a good attitude.  Those are just the people who "think positive" all the time and see only the good.  So, Hey, I can have a negative attitude and the "feel good" people just don't ever see it. 

Anyway Padster, you will get on dialysis and feel better than you do now just by getting the fluid off.  Get the fluid off and if you are still peeing a little you can drink more.  Enjoy it while you can.

Again, I love your posts and comments.   

[Padster]

Thank you all so much for your very helpful and supportive comments. I really do appreciate them, and I am having a good day today. I hope it lasts all week!

@bajanne: I admire anyone who stands up for their faith and beliefs. You wouldn't think it from reading my comments, but I too believe in God, even though the poor guy gets a lot of flack from me at times. It is that belief or faith that I probably draw a lot of strength from unknowingly.

@Mom3: Very wise and positive post. Thanks

@angieskidney: Thanks for your insight. Its nice to know that these feelings we have are natural and understandable.

I do intend to make every effort NOT to turn into a miserable git!

Best wishes,
Padster

[angieskidney]

Thank you all so much for your very helpful and supportive comments. I really do appreciate them, and I am having a good day today. I hope it lasts all week!

@bajanne: I admire anyone who stands up for their faith and beliefs. You wouldn't think it from reading my comments, but I too believe in God, even though the poor guy gets a lot of flack from me at times. It is that belief or faith that I probably draw a lot of strength from unknowingly.

@Mom3: Very wise and positive post. Thanks

@angieskidney: Thanks for your insight. Its nice to know that these feelings we have are natural and understandable.

I do intend to make every effort NOT to turn into a miserable git!

Best wishes,
Padster

You are welcome I think we all want to be supportive and helpful of each other here

[Riki]

I find that the better dialysis I get, the better person I seem to be.. *L*  All we can really do is keep going, I mean.. it's better than the alternative, right?  just keep your life going.. do what you want to do, whether it's getting a job, starting a garden, playing with the kids.. whatever.. and have fun doing it... I've discovered recently that I'm finding it harder to do anything that I want to do.. weird thing about it is, it has nothing to do with my kidney disease... I have a part time job.. work from home... but my eyesight is getting worse.. it takes me a lot longer to read and type than I used to.. and my job is pretty fast paced.. it kinda ticks me off, because it's going a lot sooner than I thought it would... but it's one of those things that you can't do anything about.. so you let it slide and live with it... anyone know of any jobs for a blind woman on dialysis that don't qualify for disability??

[angieskidney]

I find that the better dialysis I get, the better person I seem to be.. *L*  All we can really do is keep going, I mean.. it's better than the alternative, right?  just keep your life going.. do what you want to do, whether it's getting a job, starting a garden, playing with the kids.. whatever.. and have fun doing it... I've discovered recently that I'm finding it harder to do anything that I want to do.. weird thing about it is, it has nothing to do with my kidney disease... I have a part time job.. work from home... but my eyesight is getting worse.. it takes me a lot longer to read and type than I used to.. and my job is pretty fast paced.. it kinda ticks me off, because it's going a lot sooner than I thought it would... but it's one of those things that you can't do anything about.. so you let it slide and live with it... anyone know of any jobs for a blind woman on dialysis that don't qualify for disability??

You don't qualify for disability? In my city as long as you are on dialysis you qualify for disability because it is considered a "Life sustaining therapy". How come you don't qualify? There may be programs in your area that will train and put you into light duty positions even without being on disability maybe??

[Mom3]

There are incredible computer adaptations for people with loss of sight. Call your Commission for the Blind, or if you are near one, a school for the blind and visually impaired.  You'll be thrilled with what is out there! Blind people can do almost anything!

Mom3

[angieskidney]

I once went to kidney camp for kids that shared a camping resort with blind kids with the CNIB (Canadian National Institute for the Blind) and one of the camp counsellors was legally blind but could see with the help of a machine that would blow up the size of any paper he put on it and put it onto a magnified screen. I thought that was the coolest thing!

[Riki]

You don't qualify for disability? In my city as long as you are on dialysis you qualify for disability because it is considered a "Life sustaining therapy". How come you don't qualify? There may be programs in your area that will train and put you into light duty positions even without being on disability maybe??

No.. the only thing that we have here is provincial.. Disability Support Program.. which is incredibly hard to get into... I was told by others that if they can find a reason to turn you down, they will... they changed this rule, but 5 years ago, I went in to see if they could help me with transportation costs.. I filled out their 10 oage application form... 2 weeks later I got a call from them, saying that I'd been declined.. when I asked why, they said it was because I made too much money... that struck me weird, then they told me that since I was under 25, they had lumped my parents income in with mine... I didn't even live with them at the time... the rule was changed shortly after that... I never bothered going back... I figure the only other thing I even have a chance with is Canada Pension.. and you have to pay into it for a minimum of 5 years before you are eligible.. I need another 2 years of work...

[Mom3]

In the US most non-dialysis applicants now have to apply for disability several times; most aren't approved until their THIRD try. Sounds like you gave up pretty easily... I'd go back. Here you almost have to have an attorney. Does that help there?

Do you have an agency that helps the visually impaired in your area?

Mom 3

[angieskidney]

You don't qualify for disability? In my city as long as you are on dialysis you qualify for disability because it is considered a "Life sustaining therapy". How come you don't qualify? There may be programs in your area that will train and put you into light duty positions even without being on disability maybe??

No.. the only thing that we have here is provincial.. Disability Support Program.. which is incredibly hard to get into... I was told by others that if they can find a reason to turn you down, they will... they changed this rule, but 5 years ago, I went in to see if they could help me with transportation costs.. I filled out their 10 page application form... 2 weeks later I got a call from them, saying that I'd been declined.. when I asked why, they said it was because I made too much money... that struck me weird, then they told me that since I was under 25, they had lumped my parents income in with mine... I didn't even live with them at the time... the rule was changed shortly after that... I never bothered going back... I figure the only other thing I even have a chance with is Canada Pension.. and you have to pay into it for a minimum of 5 years before you are eligible.. I need another 2 years of work...

Wow Riki! I am so sorry. It is different Province to Province as in Ontario it is easier to get on Provincial disability (I am not on Canada Pension as I have not been able to pay enough into it even though I have worked over 5 years) when you are on dialysis. When I had a transplant however .. no I could not get on it. So I had no coverage for my medication .. then they wondered why I lost my transplant ... I mean .. yes I was non-compliant (I hate that word) as they say, but that was because I had the transplant at the age of 16 and did NOT know I would gain that much weight from the Prednisone and I freaked .. as any teen girl would have. But when I started taking the meds again I had no coverage

Well, have you tried to contact your local MPP? Make sure you actually refer to dialysis as a "Life SUSTAINING Therapy" as that is how it is classified here and that works. Maybe a new thingy can be passed in your Province that will make everyone on dialysis in your Province covered easily through disability. Who knows. Or maybe your Renal Social Worker can do something or suggest something.

But one thing I just thought of ... it is important to note that when my transplant was failing I had to apply 4 times!! Then I gave up.... but once I was on dialysis I had to give up my 12-hr shift job .. I had no choice but to try to apply again .. and I got approved but it took a 9 month wait .. I had to be on Welfare in the meantime ..

Please try and apply again but this time with the help of your Renal Social Worker and your MPP Maybe letters from them will work!