Are you alone ?

[flip]

That's why I grill out most of the time...no dishes to fool with.

[twirl]

and Flip drink vodka right out of the bottle and save on washing glasses
my Aggie son brought home his dirty dishes to run in our dishwasher to save money on the electric bill----- it is his turn to pay---they run the air on 60 degrees---- go figure

cats and dogs do count and IHD counts and friends count
I have a twin who will not give me a kidney ----- she'll do anything else so I don't know----- I have a couple of friends who would like to give me a kidney

my"aunt" I loved dearly was really no kin to me at all and my children think she is their grandmother

[Rerun]

Kick, my husband stuck around after my transplant for about 8 years.  But, the prednisone puffed me up so that I wasn't the perky little blond that he married.  When he joined the Volunteer Ambulance I was stupid enough to think he did it for me.  To learn more about medical things.  Then he started working out and dressing up and wearing Cologne for the meetings.  Then I noticed this lady who wouldn't take her eyes off him whenever we were around her/them (she had a family).  One day he come home and told me "What you have been thinking about Linda and me was true".  The rest is a raunchy history that should only be told when drinking Long Island Ice Teas! 

                                       

To keep on topic, I'd rather be alone.

[Brightsky69]

I have lived with my boyfriend for about 5 years now. He is pretty much in denial about my health issues. Although when I do get visibly sick he is very good about taking care of me and the house while I am down. Otherwise I usually take care of the cleaning, laundry and food. I am a caretaker type. I go to 99.9% of all my doctor appointments alone. The only time I take someone with me is when/if they are going to do a procedure where they have to put me out. And I usually call on a friend for that. So…there is really no one I can honestly talk to about my kidney problems except you guys. 

[paris]

Brightsky69,  I relate to what you wrote.  I have a good husband, but I have always been the caregiver. I take care of everything and everybody.  I do all the housework, cooking (hot meals everyday), bills, shopping, etc. I go to all my appointments alone,except to the transplant center for tests.  And have done that alone when husband has to work.  Right now I am tearing up the ceramic tile in our forer and stripping the hard wood floor under it.  I do all the painting and just finished the kitchen and dining room.   I like to be productive, but now I need to do it on my terms, on the days I am able to do it.   It is hard for family to realize how much has changed.  I hide it most of the time when they are around.    We were at  a park for the 4th and after the fireworks, we got all our things and headed back to the cars.  I was carring two camp chairs and a large bag.  It was 90 degrees, we had been in the heat all day, and I just couldn't keep up.  Everyone got to the cars long before I did.  And they all stood there watching me struggle as I walked up to them!   They are all good people, but I have always done it, so they didn't see a problem.   And they would be hurt if I said " are you kidding me---is no one going to help me?"   They think I am strong.        Good thread Kickstart!

[Mizar]

I am the Wife. He is the one taking Dialyasis. He is gone to Dialysis, Three times a Week, Four Hours a Day and then comes Home and Sleeps for Four Hours.
On the Days, he feels good, it is hard for him to Walk a short distance. We are Retired and Moved to our Dream spot, thinking we could visit, Children and
Grandchildren, whenever we wanted and then He got Sick. Our Plans, went down the Pooper. I'm not Complaining for Myself, I'm thinking, how very Hard, it must
be to do this all alone. God Bless you all.

[Robby712]

KICKSTART,

I am not sure we can ever be satisfied. What I want is someone I can switch on and off as it suits me. Sometimes I enjoy the peace and quiet when I am alone. Other times, it can drive you up a wall and get very lonely. I am developing a relationship and I have recently developed this kidney issue. Now I am somewhat hesitant to pursue this. She's a great girl and she knows what is going on  but......


Mark

Good point.   Basically I would love a girlfriend that would be there the 5 or 6 hours a week when I need one...and then would love to be left alone the remainder of the time.  I would guess many on dialysis kind of develop this sort of "me first" attitude as a survival tool... I've dated 3 separate girls since I started dialysis 4 years ago and they all ended for similar reasons...not enough time for them...when you work 40 hours a week, lose 12 hours a week or so in clinic, and just want to nap or stay more often than not...that doesn't leave you with much time to spend with a significant other.   

As much as I secretly want to place them blame on them for being selfish...I suppose it's equally selfish of me to expect someone to completely alter their life to cater to my wants and needs.

*But I can dream can't I 

[flip]

Donna is home only about every other weekend and sometimes she treats me like an invalid. I think she believes all the bs about not lifting with the fistula arm. She wants to carry in all the groceries (I still get to do the cooking) and asks me if I want a scooter chair at Wal-Mart (I'll be damned if I ever do that). I don't consider myself handicapped (even though I have the permit for good parking spots).

[Lucinda]

I don't live on my own but sometimes I wish I did.  While it is great to have the extra hands around, you do get sick of having to make excuses when you just want to lie down and have a rest.  I am with RichardMel.....sometimes I think - no, I know - my dogs are more understanding than the humans in my house.  My older dog brings me my slippers when she wants to have a sleep and brings me my runners when she wants to go for a walk.  When I am not feeling well she seems to know and never brings me the runners - just the slippers.  It is very cute and better than "Don't you think you would feel better if you just got up and did something."   

[Mizar]

Your allowed to carry in Groceries, with a Fistual Arm? My Husband told me, he was not allowed to even pick up his Socks off the Floor. Hmmmmm?

[flip]

maybe I need to start wearing socks

[Chris]

Your allowed to carry in Groceries, with a Fistual Arm? My Husband told me, he was not allowed to even pick up his Socks off the Floor. Hmmmmm?

Ught Ohh, busted!
Only thing I was told was to watch out for heavy lifting. But I could do alot with my arm, but with a graft in the same arm, it gets weak quick. It feels cold, gets a tingling sensation, and becomes very weak if I am holding something straight up.

[Rerun]

If people are around I tell them I'm not supposed to lift too much with my arm, but when I'm alone and need something done I do it.  I got all my computer equipment upstairs!! 

                                                                   

[G-Ma]

My kids know me all too well...they walk in and ask who should get the butt whoopin...I just tell them that their butt whooper is broken.  I attempt to do as much as I can for myself...lifting and all.  Thats another story...TDI...too Da...Independant.

[flip]

my vascular surgeon said anything up to 40 lbs. was basically okay

[brenda]

My Motto: I'd rather be alone than wish I was! 

[Chris]

My Motto: I'd rather be alone than wish I was! 

OK that one is making me think to hard
Gonna have to  into my head to understand meaning.
I hope it is the sleeping pill that is kicking in and not a brain cell dying off.

[MyRenalRomance]

I am grateful that I do not have to face this disease alone, my husband is very supportive and loving.  However, I feel extremely guilty for burdening him with this disease, and how much it has affected and limited his life.  He is not diseased, but he is forced to life his life with all my barriers.  There are days when I just want to go home, put on my pajamas, and fade into the sofa.... but there are people who are counting on me to fix their dinner, run them around, listen to them, solve their problems, etc.  Yes, they do inspire me to keep going, but they also keep me going even when I need to stop. 

I can relate to everything you just wrote cherpep! 

I was diagnosed with scleroderma prior to being married in 1986.  In 1987, just 1 year into marriage, I suffered seizures from hypertension, and my kidneys were affected at that time.  Over the past 21 years, my kidneys have been on their decline due to the scleroderma, until my transplant 6 weeks, ago. So, basically, my hubby has had to deal with my health issues and its downward spiral our entire married life!  Both of our teens have known nothing else, but having a mom w/ health issues. 
 
As I'm only 6 weeks out from surgery, I'm still in recuperation, and dealing w/ very low energy, at the moment(and still have the scleroderma and hypertension - tho both are under control - knock on wood!).

I know the future will, hopefully, bode better times (fingers crossed!).

To everyone dealing with your individual journeys, alone, you have my utmost respect and admiration for the courage and perserverance I know you must muster every day!  Its not an easy road . . . I send you ALL my hugs, lots of caring thoughts, and  MORE HUGS!!!   

[G-Ma]

Yeah to all who have someone living with them, supporting them and helping care for them.  Today I would like that but I think it's the major nxstage stress today and no-one to get a hug from.  I'm going to just breathe for awhile.

[cherpep]

  Here's a cyberhug, G-Ma.  The NxStage can be very stressful.  There are days, when I am so stressed out that I'm not sure I can insert the needles because my hands are shaking so much.  Take a deep breath.  You can do it.  If not, well that's one of the benefits of short almost-daily dialysis.  There's always tomorrow.

[G-Ma]

cherpep...please please fill me in.....what is stressful about nxstage....I have listened to all the good things...tell me the stress part please...I haven't even started it yet and I'm flying..and not in a good way.

[RichardMEL]

I am with RichardMel.....

OMG Lucinda!!! Careful!!! People already think we're having an affair or something!!!! Besides I am not sure how my cat would deal with your dogs!

LOL (sweet story about the slippers and runners though - they are VERY perceptive creatures animals... and very special companions).

Just on Fistula arms.... while I've been told to not lift "heavy" items with it and to not wear heavy/tight clothes over it I don't just stop using it. I do use it to lift things from time to time - not HEAVY things but if I'm carrying bags I'll put one on my left arm. I don't overdo it though.. so far, knock on wood, no problems

[cherpep]

The stress comes from many angles.  Whatever happened during the day at work or home could affect my stress level.  Regarding the NxStage, the most stressful part is getting a good poke.  I'm always nervous about that.  I used to have a fistula - one day it just stopped working.  I took great care of it, but the surgeon said that the walls of my veins were just not strong enough to handle that pressure.  What ended up happening was that it got so big that the blood clotted around the perimiter, but the blood flowed through the middle.  I just couldn't get to it.  So, even though I could feel the thrill, I couldn't use it any longer for dialysis.  After a couple of attempts at flushing it, I ended up with emergency surgery with a new graft and a cathetar.  I was extremely weak from going days without dialysis and suddenly, I was off work for a couple of weeks and not able to take showers again.   I'm now using the graft, but poking it is more difficult than the fistula.  I'm getting better at it every day, but some days it just isn't right and the pressures are all over the board, and the treatment is rough.  Other days, I'm exhausted - from work & home & not getting enough sleep - that I just don't think I can do it.  On those days, I ALMOST miss the clinic where you can just go in and let someone else handle the worries.  I said almost, though.  On those days, I take a couple of deep breaths, and work my way through the stress.  If it doesn't go well, I just comfort myself with that there is always tomorrow.  Once I get a good poke and the pressures are good.  Well, then, it's an easy road after that.

[Brightsky69]

 

They are all good people, but I have always done it, so they didn't see a problem.   And they would be hurt if I said " are you kidding me---is no one going to help me?"   They think I am strong.        Good thread Kickstart!

Paris,

I hear you!! My family doesn't think there is anything serious going on with me. Even though I am now on the transplant list and my transplant is failing. They see me going to work everyday and going about my business as usual. I guess they don't see me as "sick". They too think I can handle anything...sick or not.


QUOTE ERROR fixed - Bajanne, Moderator

[Lori1851]

Kickstart,
Write me anytime. I am always here to listen. I am alone at night my hubby works 2nd. So I get on here alot.
Lori/Indiana