Are you alone ?

[Lucinda]

Hey guys.....on the fistula thing.....I was told not to wear jewellery or tight clothes on my arm and not put anything heavy against it.  As for lifting anything heavy...I was told that was fine and I do it all the time.  My first three grafts stopped working after a month because they used some new product that wasn't fully tested that was supposed to be terrific.  On the fourth go they put in the tried and tested and I haven't had a problem with it since. I went to have my bloods done yesterday and the pathologist told me that she goes to a gym and there are two men in their 70's there both on dialysis and both love doing weights.  One of them does a hundred arm rolls with one of the heaviest weights and he swears that keeps his fistula strong.  That might be extreme but I don't think you need to be picking up your husband's socks Mizar! 

[Chris]

Hey guys.....on the fistula thing.....I was told not to wear jewellery or tight clothes on my arm and not put anything heavy against it.  As for lifting anything heavy...I was told that was fine and I do it all the time.  My first three grafts stopped working after a month because they used some new product that wasn't fully tested that was supposed to be terrific.  On the fourth go they put in the tried and tested and I haven't had a problem with it since. I went to have my bloods done yesterday and the pathologist told me that she goes to a gym and there are two men in their 70's there both on dialysis and both love doing weights.  One of them does a hundred arm rolls with one of the heaviest weights and he swears that keeps his fistula strong.  That might be extreme but I don't think you need to be picking up your husband's socks Mizar! 

I am picturing those two men lifting triangular weights for some reason.

[flip]

At the center I was told not to lift, wear anything tight, or sleep on it. My vascular surgeon said no restrictions,just use my own judgement. It's like you can wear a watch or bracelet...just don't make a tourniquet out of it.

[Chris]

All these years I haven't worn my watch on my left because I was told not to, but I have a loose fitting Medic Alert bracelet. Something for me to think about and would have to retrain myself to look at my left arm for time.

[Chris]

Back to the topic..
In another post I made, it made me realize that I do have a fear of being alone. If I loose sight in my one remaining eye, who do I turn too, who can I trust. I do not have a significant other and that's when one thinks crap, I am alone.

[RichardMEL]

I had to learn to wear my watch on my right arm because I was told no way a watch on fistula arm (plus my fistula is on my wrist so a watch just would be uncomfortable there anyway let alone doing harm to the fistula!)....

I couldn't sleep on the darn thing even if I wanted to... the pulsing and throbbing and... you all know what I mean (those with fistulas anyway!) drives me totally nuts!.

back on the home alone topic... Seems to me from reading the general consensus that we'd all like some help around the house as much as the support of a loved one/partner... but sometimes if we need to droop it's also good to have your own space and not feel like you have to explain to others that you are just flat out tired from dialysis (or whatever) and need to rest quietly.

It's difficult when people see you going about work and life... because we all want to LIVE LIFE as normally as possible... that it's hard for them to understand just what we're going through. I try not to resent that though because it's not really their fault.. and I'm just glad I *can* get out there and live a pretty normal life apart from dialysis and the other associated stuff.

[MyRenalRomance]

^  I can really relate to your last paragraph RichardMEL.  People have said to me throughout the years, "But, you don't look sick" . . .

[flip]

I now wear my "Live Love Dance" purple bracelet on my fistula arm all the time. Thanks, Okarol or whoever put them in the goodie bag.

[cherpep]

It's difficult when people see you going about work and life... because we all want to LIVE LIFE as normally as possible... that it's hard for them to understand just what we're going through. I try not to resent that though because it's not really their fault.. and I'm just glad I *can* get out there and live a pretty normal life apart from dialysis and the other associated stuff.

I don't know if wiser words have ever been spoken.  This is sooooooo true!!  Of course, this is what we want, right?  This is why we push ourselves so hard, even when we don't want to - because we don't want to look sick, because we want to appear 'normal'.  How dare they not know what we are going through!  It's not like we are trying to hide it (sarcasm). 

[RichardMEL]

I don't know about wanting to "appear" normal... for me it's about LIVING as much as I can and as normally as I can with the constraints opposed on me by ESRD. In a way I don't really care about what people see... the needle marks, fistula etc... I'm reasonably open about my situation if people ask, but I don't want to draw attention to it either. For example people at work know what the deal is - I mean how could they not when I'm off to dialysis sessions every week - and sometimes they ask questions.. specially if we're at lunch or something... but I don't want to just go around talking about what I can or cannot do. I guess I mean I'm not going to draw attention to it, but I'm not going to shy away from it or pretend it doesn't exist. It's part of my life but I don't want to let it control my life. I want to stay positive and focus on my goals for the future and what I can do when things hopefully improve for me (as in a transplant) and then I can do all the things I've been thinking about for the last 2+ years

[talon999]

I don't know about wanting to "appear" normal... for me it's about LIVING as much as I can and as normally as I can with the constraints opposed on me by ESRD. In a way I don't really care about what people see... the needle marks, fistula etc... I'm reasonably open about my situation if people ask, but I don't want to draw attention to it either. For example people at work know what the deal is - I mean how could they not when I'm off to dialysis sessions every week - and sometimes they ask questions.. specially if we're at lunch or something... but I don't want to just go around talking about what I can or cannot do. I guess I mean I'm not going to draw attention to it, but I'm not going to shy away from it or pretend it doesn't exist. It's part of my life but I don't want to let it control my life. I want to stay positive and focus on my goals for the future and what I can do when things hopefully improve for me (as in a transplant) and then I can do all the things I've been thinking about for the last 2+ years

Great Outlook RichardMEL,

I agree with what you are saying. I work also and everyone in the office (if not the whole plant) knows that I am on Dialysis. I get some questions and I openly answer them to the best of my ability. I still find myself dwelling on the "issue" but I am getting better about looking to the future and thinking about other things. They have my a$$ busy now chasing paperwork to get on the "lists". I have appointments, education seminars, meetings with SS etc. Plus a fulltime job.
Give me a break.

Mark

[Claudia30]

I too am alone. I had my mother and then she died 4 years ago and while she had 4 sisters they do not talk to me so i have no family support. I have 2 friends one who is willing to take care of my cats when i'm in the hosptial and not much else and another who does more for me but has a family of her own to take care of. I am literaly 100% alone. I go to my doctor's appts alone. AT times i have to admit, i like being alone so i don't have to worry about another person but then there are times when i could use the help of a second pair of hands. This past weekend was a good weekend in terms that igot ALL my laundry washed and all my dishes washed. They were piling up all over my apartment. It takes alot out of me to just cook dinner and there are times that i would really like someone to cook for  me or run to DD and get me a tea. i have my cats and they are my babies. I'll be h onest and say that having relationships whether they are friends or more are hard. it takes alot of energy to start and maintain a relationship and people who aren't sick don't understand. At times I am terrified that i'm alone, who will take care of my cats if something happens to me. What will i do if i suddenly get the call that a kidney came in? Who would take me in, who will help me when i get home after the surgery? I do have a million questions like that but at the same time i do like being alone (i am totally used to it). we all have our moments good and bad. I am grateful to be alive and kicking - even if it isn't all the time i'm kicking. 

[cherpep]

My motto has been, I'm not gonna let dialysis take over my life, I'm just fitting it into my life.  

I do try to appear normal, because I don't like people feeling sorry for me.  I don't try and hide the fact that I have dialysis, but I do try to hide the exhaustion, especially at work.  In our state of economy, I cannot give the impression that I cannot do my job as well as the next guy.  I cannot let it affect my work.  At my job, a big impression is given in the amount of hours worked.  I have to work equal hours, which means making up a lot of time from doctor's appointments.  I cannot appear weak and exhausted.  

[MyRenalRomance]

My motto has been, I'm not gonna let dialysis take over my life, I'm just fitting it into my life.  

I do try to appear normal, because I don't like people feeling sorry for me.  I don't try and hide the fact that I have dialysis, but I do try to hide the exhaustion, especially at work.  In our state of economy, I cannot give the impression that I cannot do my job as well as the next guy.  I cannot let it affect my work.  At my job, a big impression is given in the amount of hours worked.  I have to work equal hours, which means making up a lot of time from doctor's appointments.  I cannot appear weak and exhausted.  

You are one tough cookie, Cherpep! (of course I'd expect no less from a RedWings fan! LOL)
Keep up the good fight!

My motto has always been:  "I am more than my disease(s)"
(which is much along the lines of your motto's sentiments)

[Chris]

Think my motto for when people ask how do I feel or how am I doing would be to say "Ask Me tomorrow" or "I don't know yet, ask me latter" That way I will not have to answer and have people  if I do say something.

As for the kidney transplant, the hospital will put you up in a room after discharge nearby so you can come to the appointments or have trouble. There is usually a nurse on standby, and then a home health nurse will come to your home. Just tell them your situation and they should be able to accommodate. Also hate it when you are asked if you are here by yourself and feel like you are looked at differently because you are. Some test tell you that you have to have a person with you to take you home after the test. I end up lying by saying they are downstairs, or make a phoney call to make it look like I am calling my ride and I just walk out, hop on the train and go home.

[Mercurial]

I didn't used to get lonely until after being through two long-term relationships.  It's rare enough that I encounter a woman I find interesting as I have one of those introverted bookish personalities...  I have severe doubts that there's anyone this won't eventually overwhelm and tend to wish I had never loved and lost so I wouldn't feel that void.