EOWYN2424   121,611
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My friend the nurse doesn't understand how hard it is!

Friday, February 03, 2012

She keeps insisting that I can get by with only a 2kg gain or less on Wednesday and Friday but a 3kg gain or less on Monday due to the weekend. Unless you're a dialysis patient, you won't understand how hard it is to keep to that!

Normal people just drink without thinking about it, in fact, normal people are actually encouraged to drink more! But dialysis patients have to measure every drink; sip, more like!

I tried to explain to her how hard it is to keep to 2kgs or less! But she keeps insisting that if I can do it that week so long ago, why can't I keep doing it?! She just doesn't understand, because she's normal!

What I wouldn't give to be normal with functioning kidneys!

  
  Member Comments About This Blog Post:

CRYSALLIS1 2/3/2012 8:33PM

    My prayers are with you as you work through the struggles of dialysis.

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MEWHENRYSMAMA 2/3/2012 12:01PM

    OH, I JUST CAN'T IMAGINE HOW AWFUL IT IS....SO SORRY. BUT I CAN SYMPATHIZE THAT I WOULD HATE TO HAVE TO LIMIT FLUIDS AND MEASURE THEM! AND RIGHT NOW I CAN RELATE IN THAT FOR THE LAST THREE DAYS MY WEIGHT HAS GONE UP EACH DAY, EVEN THOUGH I HAVE TRACKED MY FOOD AND DONE WELL. I AM SURE IT MUST BE FLUID RETENTION, BUT IT IS STILL SO FRUSTRATING AND I AM SURE IT IS JUST A FRACTION OF WHAT YOU FEEL WHEN YOU KNOW IT EFFECTS YOUR BODY MORE THAN JUST ON THE SCALE. YES, I AM SURE YOU WISH YOU WERE "NORMAL" AND I DO TOO, WITH WHAT I DEAL WITH...BUT WE MUST PLAY THE HAND WE ARE DEALT AND JUST DO THE BEST WE CAN...THAT IS ALL YOU CAN DO! PLEASE TALK TO THE DOCTOR ABOUT THIS AND FEELING DEPRESSED AND FRUSTRATED! THINKING OF YOU emoticon

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SHERIO5 2/3/2012 9:20AM

    emoticon emoticon

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GLOWLIGHT 2/3/2012 8:07AM

    That must be so hard. You have my sympathies - I can't imagine how difficult it must be for you. emoticon

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ADEWYN 2/3/2012 8:05AM

    emoticon emoticon

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GLORY63 2/3/2012 7:32AM

    emoticon

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I just can't do it!

Thursday, February 02, 2012

I just had a bit to drink after my lunch and dinner, I woke up too late for breakfast and I had 1, just 1 measly cup of chilled green tea and a mandarin and I'm already 2.4kgs up! There's still lunch tomorrow, I hardly take breakfast as I'm usually not a morning person and wake up too late for breakfast anyways.

How in the world am I supposed to keep my weight from hitting the 2kg mark. My doctor said that it's best to keep my weight gain from food and water to 2kgs or less!

It's impossible! God! I feel suicidal!

  
  Member Comments About This Blog Post:

RUNCHOOSE 2/7/2012 11:29AM

    Hey Elaine, I just googled for Malaysian suicide hotline resources I thought you might want to try out these numbers: http://www.suicide.org/hotlines/int
ernational/malaysia-suicide-hot
lines.html


Can't vouch for it but sometimes it helps to talk to someone who is a trained professional.

Comment edited on: 2/7/2012 11:31:21 AM

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MEWHENRYSMAMA 2/2/2012 1:25PM

    OH SWEETIE, I CAN UNDERSTAND YOUR INTENSE FRUSTRATION, BUT PLEASE HANG IN THERE. THERE HAVE BEEN SOME GREAT SUGGUSTIONS HERE, PLEASE TALK TO YOUR DR AND MAKE SURE YOU TELL EXACTLY HOW YOU ARE FEELING AND THAT YOU ARE DOWN AND DEPRESSED. CHECK OUT A SUPPORT GROUP, AND IF NEED BE A COUNSELOR WHO DEALS WITH PEOPLE WITH CHRONIC CONDITIONS AND HEALTH ISSUES, GO ON LINE TO SEE IF THERE IS A SUPPORT GROUP YOU CAN COMMUNICATE WITH. STOP WEIGHING YOURSELF AND MAKING YOURSELF CRAZY...LET THE DR KNOW WHAT IS GOING ON AND WHY. AND YES, EAT A MORNING MEAL WHEN YOU GET UP, SOMETIMES I, TOO, WAKE UP LATE AND I STILL LABEL IT AS MEAL #1 IN MY JOURNAL...IT COULD MAKE A DIFFERENCE IN HOW YOU FEEL. YOU ARE IN OUR THOUGHTS AND PRAYERS. YOU WILL FIND STRENGTH...HANG ON, IT WILL GET BETTER.
emoticon

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CHAYBLEE 2/2/2012 11:45AM

    I have to say, I don't know much about dialysis or the effects. All I can offer you is support, prayers and good wishes. Please don't give up though. Hope is one of the most valuable weapons we possess. Hang onto it.

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KYKRISTIN81 2/2/2012 11:06AM

    Sorry you are going through this :(

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PYNETREE 2/2/2012 10:38AM

    I hope you can start eating something within an hour of waking...no matter how late you sleep, or whatever you call the meal. That breakfast meal is important..sort of gets your metabolism going. And ask..no, NAG, your Dr. Get referred to a Nutrionalist, or dietician. You should be able to eat smarter. And do you have to weigh everyday? You can get on the scale 10 times a day, and most likely all 10 times will be different. It is just an average...so maybe just get that average once a week...so you are not obsessing about it.

emoticon I wish you strength and good luck!

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SHERIO5 2/2/2012 10:06AM

    I agree with the previous posts, talk to your doctor. Is there a support group you could go to? I think meeting with others who have the same issues could be really helpful. Unless someone is going through your treatments and has your condition they can't really relate as well.

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EOWYN2424 2/2/2012 9:46AM

    I'm a dialysis patient, I don't urinate like normal people!

Almost all the fluid I take remains in my body till the next treatment!

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HUZZAH39 2/2/2012 9:12AM

    Our weight fluctuates during the day. Please don't be driven by your scale. I know you can do this!!

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CAT609 2/2/2012 7:13AM

    Don't give up! You can do this. Talk to your doctor again. Explain what you are eating and drinking. Maybe there is something he can do or suggest. Please don't give up! You can do this. emoticon

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I'm dead meat!

Wednesday, February 01, 2012

I can't even drink when I'm thirsty! I did that and I've been averaging more than 3kgs of fluid extraction each dialysis, which is bad! My doctor advised to to try to keep to less than 2kgs! It's just so hard! Too hard! What do you do when you're thirsty!? You drink of course. But now I guess I'll just have to go through my days thirsty!

Why must I be a dialysis patient?! Why must I have SLE?! It isn't fair! I'm not a bad person! Why must God punish me this way?!

  
  Member Comments About This Blog Post:

PYNETREE 2/2/2012 10:51AM

   

Oh Elaine..I am so sorry you are going through this. But it will get better. It's hard when you feel so sick, and it seems like everything is wrong. But, you will feel better, and then things will be better for you. I think it's a learning process. Get together with a Dietritian or a Nurse, someone with some experience in what you are going through. You will start feeling better about life.. Just give it time. I'll be praying for some relief, a lightening of your Spirit! emoticon

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ASHAIXIM 2/1/2012 9:35PM

    emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon emoticon

I can't make it go away or really say anything to make you feel better but I can tell you I am thinking of you.

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MEWHENRYSMAMA 2/1/2012 5:22PM

    I am so sorry! I know many times we wonder why we have to deal with such difficult
Things! I do not think you are being punished! I will keep you in my thoughts and prayers!
The suggestions may help...I hope they do and are worth a try! Let us help support you when times get rough...we are here!
Mary
emoticon emoticon emoticon

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RENIESSPARKIN 2/1/2012 4:13PM

    Hello, Elaine. So sorry you are going through these horrible experiences. If I could help shoulder the experience for you, I would gladly do it. I notice a lot of people have suggested ice chips and lozenges. You can also put a smooth pebble about the size of the end of your thumb, and suck on that or just keep it under your tongue. It sounds weird, but it works.

You are a beautiful person and you have a lot of friends on SparkPeople who want to help and support you any way we can. I will pray for you. With God's help emoticon

emoticon emoticon

Renie

P.S. I'm adding you to my friend list, but you don't have to worry about replying while you are feeling so sick.

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2004SILVERADO 2/1/2012 2:44PM

    No you are not a bad person. No God is not punishing you. God is making you stronger. Have faith. And try the ice chips. They do help. We are all in this together. Just reach out when you are feeling down. And God bless you.

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MICHELLE311106 2/1/2012 1:49PM

    I agree with MISS RUTH. God doesn't punish us even though it seems like it at the time. He gives us trials and tribulations and he is always there to help us through them. Keep your faith strong and listen he will answer your questions but in his time.

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MISSRUTH 2/1/2012 12:40PM

    I don't think God is punishing you. Bad things happen to good people. Perhaps He is helping you through this experience, so He can use you as an example of what faith can do.

Maybe holding an ice chip in your mouth, and just letting it sit there (no chewing!) will help, when you feel really thirsty.
emoticon

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SHERIO5 2/1/2012 10:21AM

    I wish I could take away this struggle. I agree with the last post, maybe chewing gum, or a mint would help? Cooling down your body quickly might help too, run cold water on your wrists, a cold towel around your neck? A cool bath?

emoticon

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LINTPICKER 2/1/2012 7:36AM

    I am sorry you are going through all this. Hang in there, perhaps try some kind of lozenge to keep your mouth moist, or gum. Perhaps that will tame some of the thirst.

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I love the way my room looks now!

Tuesday, January 31, 2012

I spent almost the entire afternoon today cleaning my room! I basically tidied up my numerous books, wiped the table tops and shelves and got rid of some junk I never use or look at. But I didn't throw out much. I guess I'm a sort of hoarder. Maybe the next cleaning, I'll get rid of more stuff but right now, I'm pooped!

My room looks much better now though! And I've reclaimed the top of my writing table which was previously covered with books, mags and papers!

Can that count as exercise? Because I don't feel like exercising right now. It's about 6.30pm and it's still hot with no breeze! And I feel so dirty after all the wiping and dusting! I think I'll go have a shower now...........bye!

  
  Member Comments About This Blog Post:

GLOWLIGHT 2/3/2012 8:09AM

    It always feels great after you've cleared away all the crap, doesn't it! emoticon

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MEWHENRYSMAMA 1/31/2012 10:43AM

    I think it counts!
Good for you, I am sure you will enjoy your clean space!
emoticon emoticon

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SHERIO5 1/31/2012 9:59AM

    I think you can count ANY exercise, espeically heavy cleaning that makes you sweat!!!

I always feel more motivated to DO something when I've got my areas organized!

Make today a great one!

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Q8PRINCESS 1/31/2012 5:41AM

    It's so nice to get things all tidied up. It's so nice to go into clean organized rooms! I don't miss the humidity at all.

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From now on, complete vigilance!

Monday, January 30, 2012

OMG! I can't even have few extra drinks at all! Look what happened today! I was 0.6kgs overweight after dialysis! This is Baaaaaaaaad! REALLY Bad! All right! That's it! No more extra drinks in between meals. And only one small cup per meal!

Being a dialysis patient REALLY sucks!

  
  Member Comments About This Blog Post:

RUNCHOOSE 1/30/2012 11:37PM

    emoticon

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KYKRISTIN81 1/30/2012 12:36PM

    Sorry you have to go through that :(

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MEWHENRYSMAMA 1/30/2012 11:02AM

    Oh, I am sure it does! I am so sorry...I am hoping things will be easier...
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SHERIO5 1/30/2012 9:43AM

    I had no idea... emoticon

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