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ILOVEFLUID
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« on: March 24, 2008, 01:19:41 PM »

This is a subject that I have been fighting with myself for a long time.  I cannot find the answer and I fear if I do not change my life I will end up slowly killing myself.  I feel I used to sabotage myself on purpose because I wanted to live as long as my parents and only that long.  Who else would take care of  me when they were gone?  The idea of living in a nursing home in my 40's was unbearable.  However, now I am married to a wonderful guy who takes amazing care of me.  So, why do I still continue to harm myself?
     I have had diabetes for 16 years.  The first 7 years it was controlled by diet and exercise.  I never really worried about diabetes.  As long as I ate properly and went to the gym regularly, I was fine.  When I got Goodpastures syndrome, I was started on a high dose of Prednisone which made my sugars go crazy.  But I never took my insulin properly and rarely tested my blood sugar.  I would go on binges of taking care of my diabetes but they never lasted very long.  Then I started dialysis.  At first, I tried really hard with the diet. Too hard.  It became impossible to keep it up.  Then for 2 years I was nauseous almost every single day.  When I actually felt well enough to eat, I ate whatever I could get in me.  Big Macs, Subs...whatever I was in the mood for.  My phosphorous levels went out of control.
     After two years I received a transplant and all I wanted to do was live like I used to.  For a few years I started up smoking again and I drank beer like it was going out of style.  The antirejection drugs they put me on put my blood sugar in the 30's.  Even while in the hospital, they could not get them below 25.  (They should have been around 5)  I tried for a while but it never made a difference.  I was so insulin resistant that  could give myself 500 CCs of insulin a day and it would do nothing.  There was talk of me needing an insulin pump but they cost around $7000 and I couldn't get any funding for it.  So I gave up and ate whatever I wanted, never tested my sugar and rarely gave myself insulin.  After 4 years of doing this, the specialist said I needed the pump or I would lose the kidney.  My parents bought me a pump and I started training on it.  For a while it worked and then I moved.  Where I now live, there is no pump specialist.  I only can see a diabetic specialist once every 6 months so I have next to no help with the pump.   My sugars are not as bad but they do range from 3 to 30.  There is no control there whatsoever. 
     My transplant failed after 5 years because of my diabetes.  I have been back on dialysis for over 2 years.  I drink as much fluid as I want, which obviously has its probems.  My phosphorous is outrageous and I rarely take my calcium.  I now need to have the parathyroid surgery.  My neuropathy is so bad that I am now in constant pain and worse yet have developed bilateral foot drop due to nerve damage.  I can hardly walk and when I do it is on my toes and with a cane or walker.  The pressure of walking on my toes has given me a nice big foot ulcer on my big toe.  I receive leg braces this Wednesday which I will have to wear for the rest of my life.  (I am now 36).  I have spent the last 10 months lying in bed or sitting at the computer.  I can't work and because of depression, I have no urge to do anything I used to enjoy to keep me busy (crafts..etc)  I have a physiotherapist who visits me weekly to do exercise to strengthen my body but never do the exercises she gives me.  I can't even clean my own house and have a PSW to do some of it for me.
     I feel like I am at a turning point.  I need to change  my life now or I will lose it  But I can't find the strength.  I did finally quit smoking thanks to Champix.  I can't afford to see a therapist.  I just don't know what to do.  It all seems overwhelming.  Test your sugar, program your pump, take your meds, eat properly, don't smoke, exercise, drink less fluid....etc.  It just feels easier to do none of the above.  But I am not living, simply existing.  I owe it to my parents and husband to take care of myself.  I owe it to myself.  I just don't know why I don't do it.  Any thoughts?
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Meinuk
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« Reply #1 on: March 24, 2008, 01:52:43 PM »

It took a lot for you to be able to post about sabotaging yourself.  At least you recognize it.  Take it one day at a time or one hour at a time if necessary.  Therapy would help.  Because depression on top of all of your medical issues is a huge cloud hanging over you.  Does your unit have a social worker who could hook you up with a sliding scale (or free) clinic.  Cognitive Behavior Therapy could help. (that is talk based therapy - when you can objectively look at what your thoughts/actions are and try to remedy the self destructive behavior)

Getting a handle on your diet - we all know about that struggle.  I'm sorry that you are having such a difficult time with it.  It seems like such added pressure to have to be so aware of everything that goes into your mouth, but unfortunately, we need to.  Drinking is a great social activity, but it also lowers our inhibitions, a couple of beers, and a pizza starts to look really good and oh so yummy.  Is there any way that you can limit your drinking to one weekend a month, or just on a special occasions?  (that way you are not totally denying yourself)

On a daily basis, ask yourself if you are living the best life that you can be living.  If yes, great, if not, then ask yourself what steps do you need to take to make your life better?  Life's pathway is a series of steps, and you took the first one when you posted your awareness of what is going on in your life.  We are here to support you along the way.  Step by step and post by post.

I know that you must feel like you need a sudden drastic turn around, but if you just start slowly trying to do the right things, the turn around can happen - I know that there has already been a lot of damage done, but you can still make a difference.  Give yourself a clean slate, stop blaming yourself for past wrongs and move forward.

 :grouphug;

Anna

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« Reply #2 on: March 24, 2008, 01:57:33 PM »

ILOVEFLUID  :cuddle; it took a lot of courage for you to post your thoughts. I agree with Meinuk, you should talk to the Center's Social worker and get them to point you in the right direction. Any disease takes it toll on the one going through it. My heart aches for you, if only my words could make things better.  :( Just know that we are here if any of us can help, just ask.  :grouphug;
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KT0930
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« Reply #3 on: March 24, 2008, 02:05:24 PM »

I agree with Meinuk. It took a lot of courage for you to admit to sabotaging yourself, and I applaud you for it. The next step is to take everything else one step at a time. Depression can make everything else seem nearly impossible to face, let alone deal with. See if your social worker can help you locate a free or reduced fee clinic that offers counseling services. When in the middle of depression, it seems like it will never get any better, but with help, it can. Once you get a handle on the depression, everything else will be much easier to face.  :cuddle;
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« Reply #4 on: March 24, 2008, 02:13:40 PM »

 :sir ken;  big butt too much fluid, little butt after treatment-------I Love Fluids, genus name choice, I wish I thought of it first......
I drank an 8 ounce can of Pepsi yesterday ( only I drank 6 of them) I justified it by I did not eat any candy at all...candy has never been a problem for me---but still I screwed up----- gained 2.4 over the holiday weekend.....Please take care of yourself..  People love U...I am so depressed because I can not teach anymore...I hate staying home.....I think you have at least three people who love you very much. Prozac helped me.
That is not the answer for everyone. Dialysis is a hard life...You can make it.... Your parents have worked hard to see you make it thru your life...Keep going.......actually, I gained 2.9 over the holiday weekend....(secret--I thought I did pretty good, but you know how docs are)
I like reading the information you wrote and you helped me feel better. You can help us too. We are all in the same hole...........
keep in touch, I need you....we all need you.....Twirl
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st789
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« Reply #5 on: March 24, 2008, 02:37:17 PM »

"No big mistake can not be undone"

Forgive and Let go of the past.  Be kind to yourself.
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« Reply #6 on: March 24, 2008, 02:45:09 PM »

Quit beating yourself up. I'm guilty as you in many areas. Two choices to make, continue the down spiral or pick yourself up and do the right thing. Easier said than done..trust me I do understand, like the others say One step at a time and One day at a time. Understand you are loved by your family and you are worthy of better health. Good luck ILF. I care!  :grouphug;
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« Reply #7 on: March 24, 2008, 03:03:08 PM »

We all slip and do things we shouldnt do , thats what makes us human ! Maybe start by making a list of things you need to do , like divide your fluid allowance by say 8 then tick off each time you have a drink , that way you can see how many drinks you have left for the day ? Cravings ..i have been told cravings only last about 5 mins , so if you fancy something that you know is bad for you , try doing something to take your mind off it. Tiny footsteps at first , will turn into giant leaps in the end ..good luck !
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« Reply #8 on: March 24, 2008, 03:54:00 PM »

I wish you could feel how much we all care for you.  I am sorry things feel so out of control.  Diabetis and kidney disease limit so many things in your life. Just get through today and then tomorrow.  It is too much to try to solve everything at once.  Spend more time here with us. Use us as your safe place to yell and scream.  You have shown how much strength and courage you have by posting your confession.  That was an extremely brave act of faith. Most of us are never that honest with ourselves or others.   If day by day is too hard, just go hour by hour.  I think being good to ourselves is hard sometimes. We will stand beside you, hold your hand, nag if you want us to, and give you unconditional love.  Get through tonight, then post tomorrow telling us what your first tiny step was.    :cuddle; :cuddle;
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« Reply #9 on: March 24, 2008, 04:01:54 PM »

It's normal to want to be free to do whatever the hell you want.
Chronic illness reminds you how much of that freedom has been taken away.
If you're willing, and you make a commitment to take better care of yourself, you can do it. Is it easy? NO. Does it make your depressed thinking about it? No doubt.
I hope you can look at yourself like you would someone you love, hug yourself and do what you can to take good care of yourself.
I am sorry you have so much to bear, it isn't fair that some people have to deal with so much.
I hope you feel better ILF. Hang in there, like others have said, get help where you can and rely on us for support.
 :cuddle;
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« Reply #10 on: March 24, 2008, 04:06:03 PM »

Just to make something clear.  I no longer do drink beer (well I allow myself 2 pints a year - one on New Years Eve and one on my birthday)  I do have a glass of wine once in a while in social situations.  Thank you to everyone do their wonderful messages so far.  I do need your help and I am so grateful that you are all here to give it to me.
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« Reply #11 on: March 24, 2008, 04:25:17 PM »

ILF, I could hear your pain through your words.  It may not help, but there are others here in pain, too.  I think you took the first step when you posted this -- you acknowledged it.  That was actually a good thing.  Now, let it go and move on.  Try (and I said "try") to do better tomorrow; you know what you should be and shouldn't be doing to prolong your life and improve your quality of life.  Little steps, hour by hour, take it slow.  When you've made a little progress, reward yourself (with something that's good for you and something you enjoy).  Come here to IHD.  We all know how tough this disease is to live with, and we care about you.  Hang in there, ILF!  We're here when you need us.
 :grouphug;
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« Reply #12 on: March 24, 2008, 06:41:11 PM »

I think we're all, as humans, incapable of drastic changes in one fell swoop.  I'm learning to deal with one issue at a time.  Pick the one thing that you should deal with first, and work only on that for a while.  (I'd agree with everyone else here who say deal with the depression issue first!  It makes everything else to overwhelming to deal with at all.)  Focus on that for a month or two.  Get that to a level you can handle.  Then pick the next thing to deal - be it blood sugar or fluid, or diet changes for the phosphorous level.  Change has to be gradual, or it doesn't happen at all.  You want to change - that's the first step.
 :grouphug;
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« Reply #13 on: March 24, 2008, 06:56:35 PM »

 :grouphug;

I'm sorry you're hurting so much. None of us is perfect. Being angry at yourself probably isn't productive. Forgive yourself and pick out one thing at a time to change. Realize that you will slip up on that one thing, but when it happens, let it go and start again. Look at yourself in the mirror and tell yourself that you love yourself. Try it every day for a while, even though it'll feel really weird. You don't want to hurt those you love, so learn to love yourself and maybe you'll have an easier time doing what's right for you. 

Be proud of yourself and your accomplishments. You came here and exposed your faults. That must have been incredibly difficult. You're a very brave person! I admire your courage.
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Deanne

1972: Diagnosed with "chronic kidney disease" (no specific diagnosis)
1994: Diagnosed with FSGS
September 2011: On transplant list with 15 - 20% function
September 2013: ~7% function. Started PD dialysis
February 11, 2014: Transplant from deceased donor. Creatinine 0.57 on 2/13/2014
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« Reply #14 on: March 24, 2008, 07:11:26 PM »

I feel for you. Things have been so difficult. It's never easy to deal with chronic illness. It's not fair that you have to live with it. But once you can settle into to the fact your chronic illness isn't going anywhere, maybe you will be able to accept it better and find a way to live with it. One thing that helps me is to live one day at a time, but to also have something in the near future to look forward to. Also, I have a tendency to get more depressed in the winter months and now that Spring has arrived, I'm hoping this will make a difference. Another thing that helps, is to think about the people in your life worth living for. You have your loving husband and caring parents to consider. I'll bet there are a lot of others too. All of those people need you.The thing about chronic disease is it can be so isolating and you sometimes feel you are all alone in the world. YOU ARE NOT ALONE. We are here for you along with those others in your life who care. Get that Social Worker to earn
her keep and find you therapy. Group therapy is a good option when you don't have much money.
Most importantly, I ended up on anti-depressants for a while to get me through ruff spots like you may be having now. Ask your Renal doctor or General Practitioner for an anti-depressant to get you through this. Hopefully you may not need it forever, but it may be just what you need right now. You have made it this far, and you can make life better for yourself.Get those medical people to listen up! They need to pay attention to you.I'm angry that they aren't.Don't let them brush you off.
You deserve to be heard, to be taken care of, and to find a way to get yourself beyond all of this. Give yourself a break, because it's not too late.
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ILOVEFLUID
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« Reply #15 on: March 24, 2008, 10:03:32 PM »

The weird thing is is that I do have antidepressants but part of my self sabotage is not taking my meds.  I have the means to help myself but do not.  I often consciously decide to not take my meds.  I look at them, tell myself i should take them and then walk away without doing so.  I am not a stupid person but for some reason i am making really stupid decisions.  I am taking everyones advice about taking it one step at a time.  I did quit smoking 2 months ago and that was a huge step for me.  I think starting tomorrow i am going to make myself eat small meals.  Five small meals a day and they will be healthy.  Then perhap I will have more energy.  After that, the next step will be taking a calcium pill with each meal.  And after that, I will start testing my sugar with each meal and giving myself the appropriate amount of insulin.  I think if I schedule everything around these 5 meals, it will be easier to remember to do everything else.  I will make it a routine.  Of course, I will also do my best to remember to take my pills in the morning and in the evening.  Then i will start on exercise and start getting used to the leg braces.  I am looking forward to them.  It will be so nice to have my independence back again.  I can finally leave the house without the fear of falling.  I haven't been able to leave my house on my own for 10 months.  I also am going to continue coming to IHD for advice and encouragement and when I finally feel up to it, hopefully I can be of help to some people here.  Thanks so much for everyones kind words of encouragement.  For the first time in a long time, I am excited about helping myself.  I am also looking forward to feeling better.
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« Reply #16 on: March 24, 2008, 10:08:51 PM »

Hi ILF. Quitting smoking is a huge accomplishment! A lot of people struggle for years with that. I hope you feel really proud of yourself (I fee proud of you!). One step at a time sounds like a really good idea. I'm glad you had the courage to talk about what's happening for you. Take care, gal.
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« Reply #17 on: March 24, 2008, 10:54:13 PM »

Well, ILOVEFLUID, you have met the dragon.  You have not killed the dragon yet, but you are on your way.
Of course the the dragon is you.  It's you who hates this life and you who must do something to kill this dragon.
And kick him out of your life.  No one else is able to do this for you, you must do it yourself.  But when you are ready
you will find that you have plenty of help.  First thing is get on an anti-depressant to help with the depression.  If
you believe in a higher power, now is the time to call on him for help.  Start with the little things and as you move on
forward tackle the bigger issues.  Get on a diet and watch your fluid, if you need to talk to someone try to find some free therapy and always remember you have people to help you.  Put your hand out and let your husband, and your parents, and us at IHD get you through this battle.  You CAN do  it, dear friend, just get up in the morning and
start to make your llife better.  There is nothing you can do about kidney disease, you must accept it.  It's a hard life
but you know yourself that it is worth it.  I will be praying for you and I hope you will stay close to us here at IHD and
let us know how we can help.

God Bless You,
Mimi
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« Reply #18 on: March 25, 2008, 08:23:35 AM »

Suddenly my own pain and suffering seems insignificant against that which you have to endure. 

I think the looking to the positive might help you.  You should re-read what you wrote and make note of the things you've accomplished.  Buried in there are many things like quitting smoking.  As you know from other posts here, it's tough to quit.   You were successful at that where many, many fail.  I think under all the pain and suffering you have a very strong character.  It's just buried.  Dig it out.

Thanks for sharing. I t made me realize the positive side of my own dilemma.

-Devon
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« Reply #19 on: March 25, 2008, 08:45:30 AM »

Glad you are feeling better.
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« Reply #20 on: March 25, 2008, 10:45:20 AM »

The weird thing is is that I do have antidepressants but part of my self sabotage is not taking my meds.  I have the means to help myself but do not.  I often consciously decide to not take my meds.  I look at them, tell myself i should take them and then walk away without doing so.  I am not a stupid person but for some reason i am making really stupid decisions.  I am taking everyones advice about taking it one step at a time.  I did quit smoking 2 months ago and that was a huge step for me.  I think starting tomorrow i am going to make myself eat small meals.  Five small meals a day and they will be healthy.  Then perhap I will have more energy.  After that, the next step will be taking a calcium pill with each meal.  And after that, I will start testing my sugar with each meal and giving myself the appropriate amount of insulin.  I think if I schedule everything around these 5 meals, it will be easier to remember to do everything else.  I will make it a routine.  Of course, I will also do my best to remember to take my pills in the morning and in the evening.  Then i will start on exercise and start getting used to the leg braces.  I am looking forward to them.  It will be so nice to have my independence back again.  I can finally leave the house without the fear of falling.  I haven't been able to leave my house on my own for 10 months.  I also am going to continue coming to IHD for advice and encouragement and when I finally feel up to it, hopefully I can be of help to some people here.  Thanks so much for everyones kind words of encouragement.  For the first time in a long time, I am excited about helping myself.  I am also looking forward to feeling better.

I am very sorry to hear that you are dealing with all of this.  :cuddle; Try writing a schedule down and post it where you will see it. Also, set alarms for when you have to take meds, etc. Maybe if you see it in writing and have an alarm, you will be more motivated to do it. Since you can't seem to take your anti-depressants, I really think you need to talk to some sort of counselor. I think it's your only course of action that you have left. Also, have you told your husband how you feel and what you've been doing? If he loves you, he will help you do what you're supposed to, when you're supposed to.

P.S. I PMed you.
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« Reply #21 on: March 25, 2008, 11:00:48 AM »

Ilovefluid -- There are a few factual errors you have made in your assumptions about your condition which are causing you to blame yourself more than you should.  First, almost all dialysis patients experience frequent nausea and vomiting, no matter how strictly they comply with the prescribed regimen.  During the eight years I was on dialysis, I never cheated on my diet or fluid intake once, I attended every dialysis session, I took all my medications, was the perfect patient, and yet I felt nauseous most of the time and vomited on average once a day.

Second, your type of diabetes is due to a lack of insulin receptors in the cells, which can require some patients with this condition to have to take insulin intravenously, given the huge doses they may require.  This type of diabetes is extremely difficult to control, and even people who utterly destroy their lives and become nothing more than a human pancreas imitator have highly variable blood sugar levels with this condition, so don't blame yourself for your problems.

Third, it is extremely rare for the failure of a transplanted kidney to be related to diabetes in diabetic patients.  Professor Danovitch in his book, 'Handbook of Kidney Transplantation' (Phildelphia: Lippencott, 2001, pp. 135-136) estimates that only 5 to 10% of all cases of transplant failure in diabetic renal patients are due to diabetes.  The average case of diabetic renal failure occurs after 17.5 years of diabetes, and cases are almost unheard of before the patient has lived 10 years with diabetes, so it is extremely unlikely that diabetes could have caused your kidney to fail after 5 years.

People are strongly conditioned by their socialization and instincts to live the way normal people do: eating what they want, living a free and spontaneous existence, drinking when they are thirsty, and not obsessing over testing blood sugar all day and half the night and repeatedly injecting themselves with insulin all day.  What you are expressing in your life is a strong and natural desire to be normal, and if there is blame for your becoming sicker as a result of this, it rests with the grossly incompetent medical profession for not having come up with a treatment for diabetes and renal failure that allows the patient to live normally.
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« Reply #22 on: March 25, 2008, 11:37:35 AM »

...  I will make it a routine.  ...

Ilovefluid, you couldn't have said it better yourself! Once everything really feels routine - it will feel normal to you. The time it takes to become a routine depends on your consistency.

This is one of the biggest concerns my mother has. She said she's got to deal with diabetes taking insulin, testing her sugar, and watching what she eats. Then she's got to take many pills to deal with high bp, nerve pain, stent in heart, etc. She has to wear a mask at night for sleep apnea (she isn't doing real well with it and has her first checkup soon). Soon she will have a knee replaced. Then on to the fistula and more meds and dialysis in the future. She wonders when she will have time to live. Helping her understand that this all has to happen so she can live is the hardest thing to do.

As they say, 'walk a mile in my shoes..' I would never think that I could understand your difficulties. I would say that acceptance and doing it for you is the way to go. You are in my prayers. Take care.

 :cuddle;
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kidney4traci
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« Reply #23 on: March 25, 2008, 11:43:05 AM »

ILF, you are not alone and hope you realized some release from posting and venting here on this site.  I love this site for that.  We do not judge and can usually support what you are going through from our own personal experience.  I too have been cranky and started to abuse myself with smoking and alcohol after being on dialysis and feelling like crap too often.  It was a way to forget for a bit and act "normal".  But that is normal for healthy people either and it is just another way of doing more bad than good to your body.  You do have loved ones in your life and that is a reason to live well, plus yourself!  Prayer helps me, God has shown me that I can get through anything because I am never alone.  I will keep you in prayer too that you will find your peace. :grouphug;
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« Reply #24 on: March 25, 2008, 04:05:16 PM »

Every now and then do something nice for yourself.  :grouphug;
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