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Author Topic: Every now and then it hits me...I'm abnormal  (Read 10958 times)
Charlie B53
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« Reply #25 on: May 24, 2016, 07:54:00 PM »


K&S,

If you are not needing insulin then your pancreas is still producing just enough for you to get by.

I was disgnosed type 2 6 months after starting PD.  My first year I was quite insulin resistant however that change during the next year as I lost even more weight.   The effect of always being 'full', or 'wet' with 2 liters in me squeezed my stomach.  I actually got full eating less and only ate what I NEEDED, no more just eating because I wanted to.   So I dropped 100 pounds.   Along with that weight loss my insulin resistance faded.  Moreso I am now actually a bit insulin SENSITIVE.  Where one insulin unit in an average diabetic takes off 10 point blood glucose, mine now that one unit may take off 30 unots of sugar, or MORE if I am the least bit physically active, like just being on my feet and walking around a little.    Needless to say, I haven't been needing very much fast acting insulin for the last 4 months.    AND, where my A1C used to be over 10, my last was 5.8       Am I pickled tink?   Nah, can't be, I'm a 'Guy', remember.  We don't do dat.

Keep taking Care,

Charlie B53
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Erika1212
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« Reply #26 on: May 25, 2016, 12:34:00 AM »

My doctor would tell me every month that my function is falling. I don't know if it was the antidepressants that I'm on or just not wanting to acknowledge the severity of what he was telling me but I just did not know how to feel. It didn't hit me till I had my pre evaluation for my catheter placement. The thing that hit me was the way that doctor spoke to me and looked at me. He looked at me like he was sorry and mentioned how young I was. He kept asking if I had any questions. I just didn't know what to say or ask. I went to my car and just started crying. I get emotional just thinking about it. I knew that my life was never going to be the same. I would lose my freedom.
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Charlie B53
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« Reply #27 on: May 25, 2016, 05:35:05 AM »



Whoa!   Just because you may be starting Dialysis does NOT mean you are giving up your freedom.   You have to realign your thinking just a little bit.

Dialyiss is GIVING your freedom, keeping you out of........ and you can fill in the blank in so many ways.  Out of your sick bed, as clearing out the toxins wonlt leave you feeling so sick and tired.   Out of a coffin, so you can still enjoy life, living and being with those you love.

Granted a PART of your life is changing, but only those few hours of actual treatment.

Pay attention to all the rest of your time.   This is how you can begin top enjoy things again.  Look, See, Go, Do, whatever you feel capable of doing.
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Athena
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« Reply #28 on: May 25, 2016, 07:37:14 AM »

My doctor would tell me every month that my function is falling. I don't know if it was the antidepressants that I'm on or just not wanting to acknowledge the severity of what he was telling me but I just did not know how to feel. It didn't hit me till I had my pre evaluation for my catheter placement. The thing that hit me was the way that doctor spoke to me and looked at me. He looked at me like he was sorry and mentioned how young I was. He kept asking if I had any questions. I just didn't know what to say or ask. I went to my car and just started crying. I get emotional just thinking about it. I knew that my life was never going to be the same. I would lose my freedom.

Erika, the looks I have ever received from Nephrologists or anyone else who's looked at my health record - but particularly the Nephs - have been some of the most harrowing looks I've seen. I just seem to pick up doom & gloom like a super-sensitive radar. Nephs understand all too well what renal patients have to go through. They also FEEL it. After each visit, I have to consciously erase the memory of my Neph's face that day. One of my Nephs has actually revealed to me the personal anguish he feels after seeing so many people's renal function decline in spite of all available treatments. I actually felt like I was being put in the position of a therapist. It was like the patient-sufferer was being asked for forgiveness. That visit really tortured me afterwards.

I do not take antidepressants & never have - so don't think it's the effect of the antidepressant you've on. Until Nephs are replaced by robots, we will just have to cope with their commiseration along the way. They are human as well.

If you haven't already, why don't you post an introduction of yourself in the Intro section? I'd love to know more about you and what you are going through.
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Athena
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« Reply #29 on: May 25, 2016, 07:53:47 AM »


K&S,

If you are not needing insulin then your pancreas is still producing just enough for you to get by.


I would have to agree with that. If your blood sugar control is adequate, then it is adequate, no doubt about it! I'd be thrilled to get by without any meds or insulin.

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Simon Dog
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« Reply #30 on: May 25, 2016, 10:13:37 AM »

How much freedom you have on dialysis depends on how much you are willing to fight for it.

If you want to sit back, have a tech do the work, never bother with the hassle of making travel arrangements, etc. you will indeed lose a lot of freedom.    Take charge - look into home PD or hemo; learn about all available travel options; understand what travel limits your insurance carrier imposes; and you too can raft the Colorodo or take an Antartic cruise.
« Last Edit: May 25, 2016, 03:34:56 PM by Simon Dog » Logged
PrimeTimer
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« Reply #31 on: May 25, 2016, 01:41:25 PM »


When abnormal strikes.

My husband does home-hemo. It hits when we've just settled in for the evening to watch TV when suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago. 
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Charlie B53
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« Reply #32 on: May 26, 2016, 07:57:18 AM »

..........suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago.


LOL    I've done that!     Surprised every time when I do as it is SOO much a part of my daily routine.

Brain fade,  another one of those   D'oh  moments I attributed to aging, or my easily being distracted by something and losing my train of thought completely.
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PrimeTimer
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« Reply #33 on: May 27, 2016, 01:41:44 AM »

..........suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago.


LOL    I've done that!     Surprised every time when I do as it is SOO much a part of my daily routine.

Brain fade,  another one of those   D'oh  moments I attributed to aging, or my easily being distracted by something and losing my train of thought completely.

Ha! We have a freakin' dialysis clinic in the middle of our living room! Do your neighbors? No! But we DO! Guess hubby and I are getting use to the abnormal. We hook him up, watch TV and hope to remember to record his numbers. I am pretty good about keeping up with it but sometimes I don't want to miss a movie scene, especially when it's a "who-dunnit".   
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Husband had ESRD with Type I Diabetes -Insulin Dependent.
I was his care-partner for home hemodialysis using Nxstage December 2013-July 2016.
He went back to doing in-center July 2016.
After more than 150 days of being hospitalized with complications from Diabetes, my beloved husband's heart stopped and he passed away 06-08-21. He was only 63.
Simon Dog
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« Reply #34 on: May 27, 2016, 04:57:11 AM »


When abnormal strikes.

My husband does home-hemo. It hits when we've just settled in for the evening to watch TV when suddenly we realize we forgot to take his vitals and record numbers off his cycler 15 minutes ago.
NxStage is going to be releasing a new version of the Nx2Me software that interfaces with a Bluetooth scale and BP machine.  You still have to hit "accept" on the iPad, but it's a lot easier than manual entry.   NxStage gave me $25 to test drive it.

Now, the trick is getting Fresenius and DaVita to provide the Nx2Me software and iPad to all of their NxStage customers.
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Athena
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« Reply #35 on: May 28, 2016, 06:11:17 AM »

K&S, there is a remarkable 23 year old Australian male who's been undergoing dialysis since he was 6 years old who is featured in Kidney Week in Australia that has just now ended. His growth has been stunted unfortunately from this legacy but he is educated, working full-time and enjoying life to the utmost. Two kidney transplants have failed in the past and he's had to discontinue PD is now on hemodialysis 3 times a week. A truly amazing story of survival and beating the odds when they are stacked against you (he was even orphaned when he was 6 years of age & has had to survive as a foster child). The emotion from this story has been overwhelming.
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kickingandscreaming
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« Reply #36 on: May 28, 2016, 07:46:29 AM »

I do know that my sense of "defectiveness" is very relative and that there are others dealing with so much more. And with great courage. My original post was more a description of a periodic jolt that I get when it hits me. Then I go on.

If I need perspective, I just need to visit my ex-husband (a very good friend for 54 years) who has advanced Parkinson's.  I had lunch with him the other day and was so saddened by his deterioration.  He can barely move anymore.  He used to be very athletic and 6'2" and now he's bent over to my height (5'4") and can barely talk.  Although it is very painful to see him like this, it does put my "defectiveness" into perspective.
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Diagnosed with Stage 2 ESRD 2009
Pneumonia 11/15
Began Hemo 11/15 @6%
Began PD 1/16 (manual)
Began PD (Cycler) 5/16
Charlie B53
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« Reply #37 on: May 28, 2016, 07:49:17 PM »



Someone once said "we each have our own 'Cross' to bear'

I firmly believe that some are lighter than others.

I try not to compare myself to anyone.  As it could go any number of ways.   I just need to pay attention to what 'I' need to do to get through 'My' day.   I try not to think too much about tomorrow, it will get here soon enough and I will deal with that when it gets here.

Just let me make it through today.

 
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Athena
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« Reply #38 on: May 30, 2016, 06:00:10 AM »

I do know that my sense of "defectiveness" is very relative and that there are others dealing with so much more. And with great courage. My original post was more a description of a periodic jolt that I get when it hits me. Then I go on.

If I need perspective, I just need to visit my ex-husband (a very good friend for 54 years) who has advanced Parkinson's.  I had lunch with him the other day and was so saddened by his deterioration.  He can barely move anymore.  He used to be very athletic and 6'2" and now he's bent over to my height (5'4") and can barely talk.  Although it is very painful to see him like this, it does put my "defectiveness" into perspective.

Your periodic jolt goes without saying K&S. We all get to that same temporary sense of 'defectiveness' on a pretty regular basis from time to time. No rants should ever be treated like eternal gospel on this site!  :)
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Charlie B53
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« Reply #39 on: May 30, 2016, 06:19:57 AM »


Dr's are always asking if I am 'Depressed' and/or how often I suffer from Depression.

I don't think that I do any more than anyone else.   Sure, I have my moments, but I immediately look at what I have around me, what I need to get done today, and I have to get up and get at it.   Why waste MY time sitting and fussing over anything that may be beyond my control.   Rather get up and DO something, be in control of something, make a positive difference in something that you can control.

I don't think I can waste MY time being 'Depressed'.   After all, being on Dialysis I believe I am living on borrowed time anyway, I can't afford to waste it.

Just my 2 cents.

Take Care,

Charlie B53
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kitkatz
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« Reply #40 on: May 31, 2016, 09:09:30 PM »

This year I have kept an x-cell spreadsheet of my life topics I am dealing with. I came up with it and when I want to change something I review the spreadsheet answers and try to see what I need or want to work on this time through.  I find it keeps me grounded and from the depression that sometimes gets to me.  I also us eit to review the good things in my life and either add or subtract things as needed.  I listed the things in my life under each heading.  The questions on the left are ones for you to answer for yourself. 


YOUR   NAME      Roles you have?        Things you have to do?       Family     Friends     People you deal with?     Fun things?       My traits      My Problems
                           
WHO ARE YOU?                           
                           
                           
WHAT DO YOU WANT?                           
                           
What is your purpose?                           
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