I'm still here!

[texasstyle]

Hi family, I have been sooo busy with lots of life things but i STILL do pop on and read the screens when I get a chance every couple days. I just don't seem to have much time to reply. I'm tired, I'm stressed etc... You know how it goes lol. I have been taking time for ME though. I have been volunteering at the local soup kitchen and have been attending church with a great bunch of people I've actually known for a year or so. So, some good things, and some not so good things. Mike seems to sleeping more than ever. Dizzy all the time, still taking off about 15 lbs of fluid each time. Still no care into the diet. Today he has been sick some. Keeping an eye of course. The weather got kinda cold and damp quickly so maybe it's a weather change thing or it could be the K. Yikes if it's that again. Anyways, I think of you guys often even if you don't see me around. Love ya! Carolyn

[boswife]

It's REALL good to see you and sorry for the 'not so good ' things going on   Very happy VERRY happy for the good things though because hopfully they'll help carry you through the distruction your hubby is doing to himself.  It's SOOOOOOOOOooooooooooooo hard even when they're good that im always so surprized when they just dont try harder.  Even if just for our sake    Hope for good things to keep comming your way and get your 'singing' on as well    Keep intouch,    

[The Lady]

15lbs every time?!?

How does one even put on that much in a day?

[rsudock]

Hi!!

[texasstyle]

Yes, that is the appx. number for 3 days a week sessions. Drinks, soups, etc.... it all adds up. I have thought about writting a little journal to see how much fluid I consume and somehow try to convert it just to get a general idea of how much you get in a day or so without realizing. I have already had a large iced coffee.  If I was on D, I know I couldn't do that as much as I do. it must be hard to do the fluid diet but I know many of you try very hard and are successful with it.

[willowtreewren]

Oooooh!

Thinking of you TS! That is alot to pull off. Doesn't he cramp from that much UF?

I'm glad you are getting some "me" time.

 

Aleta

[texasstyle]

sometimes he cramps after D. Not always. You know how it goes

[lmunchkin]

Wow, TS, I had no idea he has that much fluid.  It must be very frustrating for you.  Why would he do this to himself? I know it is hard for him, that is a given, but does he not want to feel any better?  Lord, Lady, I don't know what to tell you, but he should at least "TRY".

So Sorry you are going through this!

lmunchkin   

[RichardMEL]

I  think any of us who have had to deal with fluid restrictions know just how difficult this is. I went from drinking 2-3L of just water (not counting other drinks) a day to having barely nothing. It was a difficult transition.. However I'll tell you all just one D session ending in horrible cramps and THAT was full motivation to get me to take the fluid thing seriously, and I worked hard and used will power-with the cramp thing as motivation - to bring down those fluids till I was going at 2L or under between treatments. I was pretty proud of that, but I'll tell you actually maybe it's just me and my mental make up (yes, I am mental!!) but after sometime it was almost as if I trained myself to, for example, go through an afternoon at work and not even *think* about drinking anything, let alone going crazy not doing it. These days I have to prod myself to remind myself to drink because I do sometimes slip into old habits. By the time I was in say my 2nd year of D it was pretty much a routine to restrict things and just not drink much. I also used other tools like weighing myself at home to keep track of my overall gain and that way I could factor in "treats" say if I was going out with friends, or it was a warmer day, that I could indulge in a bit extra or whtever.

I know I make it sound so easy. Of course it's not.. and some people just don't have the internal tools/resolve to be able to handle that. For me it was motivation to not only stave off cramps or crashing, but to also keep my body in the best place it could be for when that call came so I could accept a transplant as well as I possibly culd. That was powerful motivation. I'd like to think it helped a little bit. That kind of thing may not be for everybody though and it can be hard - specially when the disease knocks you around so much to niot just throw your arms up and think "to hell with it. I'm screwed anyway another coke won't hurt"... well yeah.... it will - sadly.

As I've often said in relation to TS' husband - what I don't get is why he has so many examples of bad things happening, and he's told time and again why, and even sees in himself improvement when he follows the rules.. that he just can't keep to it. That seems to be a psychological issue and one that's difficult for me to understand.. rationally you'd want to do everything you could to keep your quality of life as much as possible.. but this situation is not rational. It's like love... sometimes we just don't do what's right for us when our brain is overrideen by our heart.

[texasstyle]

If things are crappy today, I'm outta here. Tired...just tired

[billybags]

Tex, What can I say, some days are crappier than others. It is nice that you are getting out a bit more, takes your mind of things for a while. Thinking about you my friend.

[lmunchkin]

I totally understand that TS.  There were times I felt the same way! But reality is he is sick, and no matter how hard it got for me, I just couldnt walk away! But I did leave him one night, and when I went back next day, he realized how hard it was on me, and he started changing his eating and drinking habits, especially, to help out!  Months later, he is reaping the benefits!  He feels better and even looks better.  He is getting better dialysis, and I am so happy for him.

I know it is difficult for you right now, TS.  Maybe getting away for awhile and have someone else take him to clinic and p/up for you. Separate for a few days and see what happens.  No body is asking you to divorce, just get away from the situation.  Sometimes, absence makes the heart grow stronger! 

I really hate this for you both, TS.  Know that you are in my prayers and hoping something will come of all this, that will be a good thing!

lmunchkin   

      Sending     to you now!

[ToddB0130]

15lbs every other day ?  Is that from salt intake as well as fluid intake.   Any info is appreciated.  texasstyle:  sounds like you're an AWESOME caregiver.  I wish your husband participated as fully in his own healthcare.  Take care of yourself and take time for yourself.

[texasstyle]

People might think I'm crazy but it is true lol. I am learning that it is not only watching your fluid, as in what you drink, but realizing that your soups, your jello's, your bowls of cereal, etc. all count for fluid also. The salt of course holds in fluid even more and I think there is some physcial properties about it that I don't understand yet. It is not uncommon to have problems with low urination on dialysis so that is all being retained. Usually when you're peeing it's water stuff, not the poisons coming out anyway iif you do. You also lose some water through sweating and bowel movements to a degree. Too much fluid build up in the body in serious conditions can filll the sac around your heart with fluid causing Congestive Heart failure. If you do your best to learn and really have the will to do the right thing, you can avoid a lot of issues.

[lmunchkin]

Ive been wondering bout you Carolyn!  Absolutely right about fluid around the heart!  That could be fatal.  You know, I know this is hard for him.  This disease takes all it can from them.  Im so thankful that DH has really changed his ways to help out, but could I do what he has done if I were in his shoes?  Im so thankful Im not, cause Im not sure I would give up sooooo much to maintain ANYTHING! 

It is really hard on people who suffer with this disease.  I just admire their strength through all of the krap they have to go threw!

So glad to hear from you again, hope hubby is helping you out some by watching his intake!  It is hard on them, too, but they can do some things to help out!

God Bless,
lmunchkin
 

[texasstyle]

lmunchkin, it hard all around. Sometimes I think (from a caregivers point of view), that maybe we stress out a little too much over things when we should just take a breath and step back for a minute. But on the other hand, this is our reality and that we can't deny.  Through all this I found a sense of humor to be the best medicine. It's great we can come here and vent, over react if  needed, cry, ask important questions, get great educational information, but from time to time we laugh here too. I was in an elevator at a hospital once and there was a flyer posted for laughing classes. I thought it a bit strange at first, then I thought I'll bet you would end up cracking up the whole time and what a great stress reliever that would be. So here's to laughing, and here's to life. Life passes us by so quickly and kindness goes a long way right? Have a great night!

[lmunchkin]

I am feeling you sister!  We have to rely on each other for support.  And knowing that we have others here, does make a difference, no matter how hard it gets!

Glad you are back, TS!  We missed you, but understood completely!

lmunchkin
 

[Whamo]

15 lbs!  Wow.  And I thought I had a big weekend.

[RichardMEL]

Sometimes it's hard to remember how much fluid you take in when sometimes it's not so obvious - stuff that is a fluid at room temp is what we were told when I first started - so that includes ice cream, soups, and the less obvious stuff like water that goes into rice/pasta when you make it, or water content in fruit eg: watermellon etc can all add up - plus of course milk used on cereal and the like. If you're not careful it can really add up. When I was on D I just banned cereal, soups and stuff like that because it was easier to just not have it so that I could concentrate my fluid allowance on fluids I'd enjoy taking in in terms of drinking.