What affects your self esteem the most?

[Sara]

The dependence on the machine?  The physical effects (dry skin, scars from surgeries, etc.)?

[geoffcamp]

The combination of all of it I think...   for me the financial aspect has been difficult too.  I got sick when I was just getting started in my career and had no insurance.  so basically I lost everything I had and the combination of the scars, just plain feeling sick has made me loose all the self esteem I had built up.  I have had to move back in with my parents then I received a transplant and started on the road back and lost the transplant within three years not to mention the side effects of the immunsupprissive drugs while I had the transplant now I am right back at nothing again and trying to crawl out somehow.  Relationships have been particularly hard for me.  Not because of any reason except I do not feel confident, I feel who in their right mind would want a phisically, mentally and financially broken person in their life?  I have just put myself back on the list for new kidney and have accepted a new job, starting 2/20/06 and I am scared I will not be able to handle dialysis and this position.  I have not told them of my condition and do not plan to.  I just need to at least try to do someting other then let the days turn into laying around until the next dialysis treatment I hate so much but need to exist.  That is the real point for me I feel I am just existing not living.. no wife, girlfriend, no new car, no house, kids, etc... no challenges except to survive the next treatment.  I really want to get back in the game of life or I feel what is the point of just going to treatment just to exist until the next treatment.  It is really HARD, I felt like I could do anything I set my mind to before I got sick now I just get tired and depressed most of the time thinking about it.  This site has been a savior for me!  A place to talk to other people who can actually understand and know what I am going through and even worse.. I really thank you all and epoman for doing this, I am an example of how important this dialogue is, it means alot!

[kevno]

Every renal patient is differant, some renal patient have very low self esteem.  The only thing I am a bit wary of is my fistula.  I always ware long sleeve shirts the scare is a bit of a mess.  The Tesio lines in my neck do not bother me.  I have a lot of friends who are not on dialysis. try not to think about it too much, because that will make you feel bad. Just try my best to carry on as normal as I can. Which sometimes I find hard to do.

Kevno
(The more you think what is wrong with you, the worse it is for you)

[Epoman]

For me it's my huge fistula. People REALLY stare, and kids think I am a monster. Plus sometimes I just look more sick than usual. But the biggest self esteem issue for me now is being in a wheelchair. That really causes me to have low self esteem. People ALWAYS stare. I am really self conscious about my arm and my wheelchair.

I used to wear long sleeve shirts all the time for the first few years on dialysis, but that got old after a while and I just didn't care anymore. So I stopped wearing them.

[kitkatz]

That tired feeling all of time!  I hate it! And having no sex drive.  And having itchy skin all the time.
And not being able to stay after school for the kids three days a week. And...


Katherine

[Bajanne]

I am not sure if my esteem is affected, but I do find it really inconvenient not being able to travel as I used to.  I put off a trip to a dear sister in the Lord in Atlanta and a blood sister in Florida last summer.  Then the second day back at school in September I was hospitalized and started dialysis at the end of September.  Now I don't know when or if I will ever be able to take that double trip.
Now I only travel on weekends (except for last Christmas holiday when I got to spend a week at my home country of Barbados).
I have never visited Canada, and I was a bit hurt that my daughter just spend a week there (she was representing her college at a Student World Assembly in Montreal).  I wonder if I will ever get to see Canada.
Anyway, I have lots to be thankful for.  I have visited England, Belgium, Switzerland, United States (New York), spent a year in France, have been to almost all Caribbean countries and lived in three of them (my home island Barbados, Antigua and now the British Virgin Islands).  So I will not gripe about being able to travel.

[Bear]

Well, that's not too bad at all Baj'!     When I was just about entering my teens, my mum started working & so
the family income allowed us to start taking holidays outside U.K. THey started with Belgium, then Switzerland & Italy
twice. Then I did a school trip to Rome. BY then I was old enough for us to go our separate ways. I did a couple of
surf trips to France/N.Spain (while they did Capri & other places). THen I met my wife....& didn't go anywhere until
we moved out to Oz. We've had only 2 trips back in 25 years!!! Plus a trip to Fiji for friends' daughter's wedding.
I've been hoping for years that when I got near to retirement & with the kids gone, we could really start to see
the world...   ...but not to be, I guess. I can probably organise (free) dialysis to visit my old Dad in Wales....but
no way can I afford $500+/- Australian each time I dialyse in some other country!!!
.....my wife is most likely going away next Xmas, possibly for a couple of months, with 2 or 3 colleagues, to Europe.
At least while she's away, I'll have a sort of freedom 
.....I suppose the esteem factor in here, for me, is that my mates are all doing  their little trips here & there, for
surf, wine, sightseeing. Having talked about various trips for years, now I can't do them & feel sorta silly 

[kitkatz]

My self esteem is shot to hell right now.  My hair is doing weird things like poofing out depite my combing three times before I leave the house.  My clothes look terrible on me.  I look in the mirror and see everything wrong.  Depressing!  I try on new clothes and hate them!  They do not look right on me anymore.  And of course there is the weight.  I hate gaining weight and losing weight every other day.  I want to lose weight but the renal diet is crazy and I can't quite give up what I want to eat.

I feel like I am sick enough and why should I have to restrict myself from food I like to eat.  I also hate being sick on top of being sick. Every cold or flu or sinus infections hits me harder than it should.  I hate it.  I am out of sick leave at work, too.  So now it is go to work regardless of how I feel.

Then the damned hospital and docs make appointments during work time.  My God!  Do they not think I have a job and a life or am I just defined by dialysis?

There it is! I am slowly being defined by this illness and I do NOT like it.  Help!!

Katherine

[kevno]

Well kitkatz, nice rant

The way I see it, we are all defined by this illness, now and for always.I have never seen a Renal Patient die of renal failure.  I know it sounds strange. It is always something else that gets us. I have seen a lot.

Less  , and More    needed.

Kevno

[Michelle]

This thread was made for me as my self esteem is at an all time low. I am fed up with this illness and the fact that my stomach is an absolute mess of scars which makes buying clothes difficult. Add that to an arm with a horrible looking fistula which makes upper body clothes difficult to find AND an unhealed broken foot which affects the shoes I can get I am fed up. Then on top of that I have found out that the surgeon who refused me for a transplant 4 years ago made a mistake and I have been put through the rigours of every undiginified test going to double check that all these other surgeons aren't missing what he saw and the knock on effects of this 'mistake'. The fact that I was put on an aggressive treatment to help the problems that were never there which made me practically immobile last year and also has made my foot difficult to heal and the big one. He has done a transplant on a friend from my dialysis unit who now doesn't believe he could have made a mistake and I am being strung along by everyone else that we now don't speak-hope we will again because most of the time shes supportive. Which then backs up the fact that transplant patients forget what it is like struggling on dialysis and whether they realise it or not they can on occassion rub your nose into it how fit they now are and you are not. Finally keeping myself busy with a distance learning course is giving me some self esteem backs but when I am not happy I lose esteem because if I WAS well I wouldn't be distance learning and then hate compromisng. I am 30 and feel much older than that and knowing I won't ever have a family or the usual rights everyone my age takes for granted is just sometimes so unbearable.

[kevno]

Hi Michelle

A lot of renal patients on this site, have gone through, or going through the way you feel just now. I know, I have felt the same way. What ever you feel you can always share your feeling on this site. We all try to help each other.  That is one of the best things about this site.
I know of a lot of Doctors who have made big mistakes on me and other renal patients.  But that is just one things of being a dialysis patient. You never forget what the doctors have done to you. Plus yes, I do agree about some transplant patients. But a lot of transplant patients end up back on dialysis that is a fact. I went back onto dialysis when I was 21years old, I will be on this year when I am 40years old. Missed a lot of my life to dialysis, you try not to let the renal failure get to you to much. I know it does in different amounts.

So I am sure if I can smile you can at least try to. 

thinking of you

Kevno

[susie q]

Kevno, I don't know how you do it... I've only been on hemo a little over 2 years and sometimes I feel like giving up on it..  seems like people are dying everyday and there is always a new person ready to take their place... never ending cycle...
In my dreams, a new kidney is being grown in a lab somewhere and it is going to change all our lives... whoo hoo   ( time to wake up now susie )  hahahaha

[kevno]

susie q

Great Dream

Hope they get on with it

To the question how I do it, No Choice you get on with it are Die   never really think to much about it. I have seen a hell of lot of renal patients die, from the first on at the age of seven, to the last one, last year.  The only thing is now,( I know this will not sound right). I try not to get to close to any of the patients on the unit. I only say hello, goodbye now. only know one are two of the patients names. Know all of the Nurses and Doctors by there First names. I used to know all of the patients on the unit. But it was so hard for me when they died, which a lot of renal patients on my unit seem to. It is the main acute unit for the area.

Less of this boring mood, need to lighten up a bit.

Kevno

[Rerun]

My self esteem is my job. It is where I find "purpose."  I've got 20 years in with Unites States Department of Agriculture (USDA). 

I filed my permanent disability papers on April 7.  It will be 6 to 8 weeks before I will be done with something I love.... but can't do it and dialysis.  Then what really sucks is they are NOT going to replace me.  I guess what I do isn't that important.  Talk about a KICK to my self esteem!   

[Michelle]

Hi Kevno,

Thanks for your reply. I am usually a very positive person so to be as down as this has taken me by suprised and I almost feel ashamed that this time I haven't bounced back. But on reflection it is not just one thing but a load of stuff has piled on top of me to such a degree that its just got a bit too much. I am not the best at opening up to people either as I have to feel a real closeness to them to ensure I won't be judged or rejected for being a grump. I lost a very close friend around 18 months ago and since then things have spiralled out of control with everything just coming on top of it. The transplant situation was the last straw but in reality this has been building for quite a few years really and although we can never have a break from renal stuff its easier to cope with the other problems of life if you are physically ok.

[kevno]

Lately I have found it hard to be positive about my life. I have always took a very lite look at my life. I know how much help you get, it is always up to oneself how you carry on. Just now I am the wrong person to be talking about being positive just now.  I can not even make my mind up about an operation the Surgeons say I must have. I know I will make the right choice and get through to the other side. I have NEVER been in this sort of mood before. After all the operations I have had over 34 years.

I will get through the usual way, a smile, a joke and the fight to get better.

Kevno
( Just a quick talk to myself) SNAP OUT OFF IT !! This is not the way I am. I never give up! I am a fighter!

[fireguy]

Come on guys , life may not be the best but look around you and there are others worst off. I know it sucks being on the machine when you wish you were doing something else, I know I hate sitting there while the guys are out on a fire call or trying to organize a response over the phone. Yes people stare at my arm, but thats their problem ,not mine. Just smile and keep going. I have lived over 40 years with an ostomy pouch hanging on my side , the last three years doing dialysis, had a triple bypass and still I go to work every day, and make over 70% of my fire calls. Somedays its rough, sometimes we have to recharge our batteries,sometime it feels good jut to complain, but don't ever give up on life.

[kevno]

Being an Renal patient since 1972 first went on dialysis at the age of ten. I have seen so much, I have seen patients give up. But that is not me, plus I feel all who type on this site. We all take a lot. It does us all good just to let go once in a while on this site.  I believe thats why Epoman got this site going. So we can all have a rant, let all our feelings out. See how other Patients who are in the same boat feel. I know the old saying look around you and you will always find somebody who is worse off than you. But when it is you, you do not notice anybody else.

We will not ever give up on life, renal patients are fighters.

I know I do not have much time to make up my mind about my leg, this is something so new to me, to have a choice. The Surgeon is seeing me on Thursday. I have made my mind up, to tell him, what ever he thinks is right to do.

Kevno

[Michelle]

Good luck Kevno and hope it all goes well for you. Please let us know how you get on as we are all here for you.

I am really happy to be able to come here and say what I really feel as I have been bottling it all up for so long and when it comes to the crunch I probably wouldn't give up. However there are times when the road seems a very long and difficult one to travel for all of us and at the moment it is not smooth going as so much has happened that has bought me down. I haven't talked about the half of it on here either but what I will say is don't bottle it up as I have done as that in itself has made me worse than I needed to be and unfortunately I tend to hide when I feel like that. Coming here to vent yesterday was a major step for me and I do know there are others worse off than me-I see it all the time at my unit but I am also facing a battle which I am not finding altogether easy so this place is somewhere I feel able to let it all out.

[kevno]

Good for you Michelle

It can be very painful to try to keep everything to yourself, I have only just told my family, my sister knew but I have always told her nearly everything. My sister is someone who I can trust to do if I say, tell no one else. I know I  lean on her a bit to much.

Thinking of you Michelle, I'm sure you win your battle.

Kevno

[Rerun]

Suffering is relevant.  If it is happening to you, it is important to be able to cry if you want to.  If it is the first time you fall off your bike or the first time you are on the machine, it is happening to YOU.  Don't deny your feelings.   

[Tracy Lynn]

I think the hardest part for me is that no one in my life seems to understand that a transplant is not an answer. They won't be disabused of the idea that I'll get a new kidney and then everything will be back to normal.
And the tremendous pressure I feel to always be upbeat and positive is really wearing on me, especially in the last week or so.
You see, I wasn't getting enough dialysis with three four hour sessions a week, so they had to add another session. So now I have a fourth session every week. Luckily it's only three hours, but it feels like I do nothing but go to dialysis.

[kitkatz]

Ok so now I am looking at the men's Hawaiian shirts in Walmart and even bought a few.  The sleeves cover the arms and are made up of soft fabrics.  I needed some new summery shirts and the women's wear in Walmart sucks a lot!  So here we go. Trying something new.  Kills me not to find new button down shirts in the women's clothing area. All they have is the frilly fru fru stuff and I don't wear it.

Katherine

[okarol]

Jenna had a tough time making friends in high school. She didn't have any. I think she just wanted to keep her dialysis life a secret, not wanting to be looked at as a freak.

[twirl]

I like short sleeve but no more..... "What's wrong with your arm?"  my students wanted to know if I had any good drugs
I do not think an iv for 4 hours would have bothered some of them..
I hate be tied down to going to the machine
we wanted to stay another day in Galveston but could not
no dialysis pre- plans
and I hate being tired
I used to be spontaneous
I want to drink water all day long