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Life of Ray #2 (Ongoing Blog)

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  • Life of Ray #2 (Ongoing Blog)

    Hey folks! Well here I am in the new digs and another week gone like the friggin wind. I've always wondered at the psychology of why things seem to take forever when you're younger and as you get older time seems to flash by. Of course we don't believe such silly things when we're children, because old people don't know nothing right? LOL YES.. I realized I used a double negative in that sentence. Just proving my point that as a child I didn't know jack****. As an adult I know somethings well, and the things I'm not sure of I can get by with wit, charm and boyishly good looks.

    SMART really is sexy but with, charm and boyishly good looks helps out tons.

    I usually can find out answers to your questions, for those not internet savvy. I'm a bit of an information junkie. Always surfing the interwebs. I enjoy chatting with new people and sharing my experience as much as I enjoy hearing and helping with others experiences. Please feel free to use me as a resource and add me as a friend if you'd like.
    See you all around the playground! Relax, be cool, we'll get there together.

  • #2
    So here we are into another week. Sometimes nothing is happening. It's ALWAYS good when nothing is happening. SNAFU as it were. That's "Situation Normal All F**ked Up" At least my normal chronic pain and discomfort is consistent. HA Sometimes you gotta laugh at the misery in order to keep from crying. Depression is a normal thing when you get a life changing disease like CKD. I was once told that I might need counseling for my depression, so I joined Twitter. All the therapy I need right there. Between that and Facebook and forums like this one it helps enormously when you're down in the dumps. Talk about your disease and talk about it often. Own it. Hopefully by talking about it you will come to know and understand better what is happening with your illness. Reach out to others who have CKD. Most people are willing to help you with issues because they've been where you are, and if not then we can find the answers together.

    The CKD community is HUGE, but people don't talk about CKD like they do for muscular dystrophy or cerebral palsy or diabetes. Hmmm ... Idk why either. More than 661,000 Americans have kidney failure. Of these, 468,000 individuals are on dialysis, and roughly 193,000 live with a functioning kidney transplant. That a lot of people 3 times a week for average of 3 hours a day on the machine. Depressingly, each year, kidney disease kills more people than breast or prostate cancer. In 2013, more than 47,000 Americans died from kidney disease. CKD often has no symptoms in its early stages and can go undetected until it is very advanced. For this reason, kidney disease is often referred to as a “silent disease” which is appropriate. New inventions and treatment for us those is advancing rapidly. We are a couple of years if not sooner for having artificial kidneys. Yeah a machine they put in you like a mini-machine. AWESOME!

    The five stages of CKD are:
    • Stage 1: Kidney damage with normal kidney function and persistent proteinuria.
    • Stage 2: Kidney damage with mild loss of kidney function and persistent proteinuria.
    • Stage 3: Mild-to-severe loss of kidney function.
    • Stage 4: Severe loss of kidney function.
    • Stage 5: Kidney failure requiring dialysis or transplant for survival. Also known as ESRD
    That's me with ESRD, which stands for End Stage Renal Disease. Sometimes it sucks to be me, and sprinkled throughout my life are moments of happy, but that's life anyway. Not knowing is scary because we all are scared of what we don't understand. Knowledge is power. Educate yourself. KNOWING (as G.I.Joe says) is half the battle. I wish I could say it's all down hill from there but it isn't. Through the course of your disease you are going to have hills and valleys, mountains that seem insurmountable and streams to ford. You don't have to do it alone. WE are here, and WE are listening.

    Have a most excellent day my friends.

    I just went on a very strict renal friendly diet. There are only three things you can’t put in your mouth- a fork, knife and spoon.

    A doctor apologized for keeping an elderly woman waiting so long in his office. "That’s all right," she said. "I just thought you’d like to treat my kidney failure while it was in its early stages!"

    Two men were talking about their problems while waiting to see the nephrologist. One said to the other, "Just when we learn to take things with a grain of salt, the doctor puts us on a salt-free diet!"

    Last edited by Grouch123; 03-19-2018, 10:47 AM.


    • #3
      Snow glorious snow. Are you frigging kidding me? First day of spring and we're snowed in here in Maryland. Thank God it was a Tuesday and not my regular schedule, which would have been nice except NOW it's Wednesday and they closed due to weather, which would have been fine BUT they don't have a seat for me Thursday till noon. F it F it F it F it F it. ... And I'm not saying Fit, I'm saying F - IT. See going to and from is a bit of a pickle (which you shouldn't eat btw) for me. I have no vehicle for the last 5 years, my license is expired anyway, and I have to get medical transport through the Health Dept. here in Maryland. So that takes planning and at least 24 hours notice before local travel and 3 days notice for out of town. Local travel being a real pain when you need to get treatment on the fly ya know?

      So, this is the second time that the Davita center has been wrong about the weather in the course of my treatment with them in the last few months. Stick to dialysis Davita and not weather prediction! Meteorologists are right only half the time anyway and the last time I checked you ain't no weather sorcerer. (Heavy sigh)

      So yeah, watching that fluid intake, taking those pills. Trying to remain calm with an anxiety fueled, emotional person is fun. That can be fun. And when I've torn the Monopoly board to shreds and tried to sleep for the 40th time in 12 hours....
      Sucks to be me. Most of the time. But I listen to some music, play a few online video games, chat with my gamer buddies on Teamspeak3, it can not suck so bad. Life is good when your not alone.

      Have an excellent day my friends!

      The veteran Dialysis Patient admits, "I used to be indecisive about whether to use Peritoneal or Hemodialysis.... Now, I am really not sure." #JokeOfTheDay
      Last edited by Grouch123; 03-21-2018, 04:31 PM.


      • #4
        Why is it that Wednesdays are starting to feel like Fridays? Wishful thinking is it? Not that much changes for me on the weekends. My COPD doesn't allow me to travel very much outside of going to the store and other light shopping. Have to use those electric scooters at Walmart, which is fun. Sometime there are not enough scooters to go around and then we have to have Disabled Death Match to determine who gets the scooter. Sort of a Handicapped Thunder Dome ..."TWO MAN ENTER, ONE MAN LEAVES" If you get that reference then your mine kind of people!!!

        I have always been a scifi nut. Even as a child scifi books by some of the greats like Ray Bradbury, Anne McCaffrey, Isaac Asimov were my escape from the realness of a reality that wasn't always pleasant. Mostly what I do is watch movies, play video games and chat with my online friends. I wasn't a terribly social person anyway and have, over the last few years, have kinda secluded myself. Ahh.. I don't need no sympathy. This is my choice. Mostly because people suck. Not everybody, but Walmart seems to attract the lions share.

        Just a reminder I'm here to help as I can with your questions. We are all in this kidney boat together and we ought to be helping one another.

        Hope you all are having an excellent week. Be good.

        I have always liked to take life with a grain of salt. Plus a slice of lemon, and a shot of tequila. Unfortunately that no longer matches my renal diet. #JokeOfTheDay
        Last edited by Grouch123; 03-28-2018, 11:56 AM.


        • #5
          Ok I've read several of your posts. You made me laugh. I, too have ESRD due to an overdose of chemo meds last year. Cancer is gone but my life has changed so drastically, this was not what I had planned. Thanks for the laughs. You're very entertaining. I'll have to read more of your blogs.


          • #6
            Here we are again! Another weekend gone by. I hope you all had a good Easter. I celebrated the holiday by sucking down a canned ham and drinking a pint of tequila. NOT recommended! Realize that when you go off your diet and fluid restrictions that you're making a conscious decision that may result in your getting sick... er. I guess I'm lucky because it caused me no more harm than a slightly elevated potassium increase in my labs. Hey man, don't judge me. You got your way of celebrating the resurrection of Christ and I got mine!

            Shout out to Deloreswoodward! Thank you for your kind comments! I'm always happy when I can make someone laugh or chuckle! Welcome to the dialysis play ground. We hang out by the monkey bars several times a week. Hope you can join us regularly!

            Started an online yoga class this morning with a few of my very excellent online friends. This is all done through face-time video on the interwebs. They call this 'Armchair Yoga'. It's designed for disabled people. Very low impact. Lost of stretching and isometric exercise from a seated position for those not ambulatory and for those also able to stand. I stretched so much I gave myself vertigo and almost fell over! LOL Just one more way to be active after sitting on my butt for the last year and a half. I started working out about 4 months ago. Investing in an exercise bike and an inversion table. Best $600 I ever spent! Total weight loss has been a little over 6lb. of actual body weight. I spend 20 min, 3x's a week on the bike and 10 to 15 min every other day on the inversion table. Slow and steady as she goes is the key.

            I wish you all a most excellent day my friends!

            QUESTION: What is the difference between God and an arrogant doctor?
            ANSWER: God does not play doctor. #JokeOfTheDay
            Last edited by Grouch123; 04-02-2018, 09:39 PM.


            • #7
              Oh, Grouch! You're AWESOME! My 27 year old son was recently diagnosed with Autoimmune IgA Nephropathy - Kidney damage is stage 3. I'm still in shock but, I'm at a point now where I can stop, breath and start learning. I'm cooking a dinner next Sunday where he and his young family are coming down. A little nervous - that I'll make the wrong thing. We're so used to the big spiral hams, mashed potatoes with lots of butter, gravy and four pies. Ugh. I did it all wrong. But, those days are over. My husband and I have switched over to the DASH diet since my son was in the hospital. He's on a low potassium/low sodium diet right now. Will he be doing low potassium from now on? What if his potassium levels get in line to where they should be? Will they still require him to eat low potassium foods? Just wondering how this all works.


              • #8
                Hey mbrinkman! Yes, potassium and phosphorus are big no-nos. Sadly that means no mashed potatoes for most people on dialysis. However, people who require a low potassium diet can still eat potatoes by using a technique to reduce potassium. Although potassium is not totally removed, it is lowered enough to safely include a small portion and keep your diet kidney-friendly. Double-cook technique for reducing potassium in potatoes This is a newer technique to remove potassium in 30 minutes or less.
                Peel potatoes and cut into thin slices, diced small or shred for hash browns.
                Place potato pieces in a pot of water and bring to a boil.
                Drain water then add fresh water.
                Bring water to a boil and cook potatoes until tender.
                Drain water and prepare potatoes as desired.
                The double cook method reduces potassium below 200 mg for a 100 gram portion (2/3 cup).

                Personally I have found it's ok to eat some kinds of no-no meats in small portions, like ham, sausage or pate'. U
                ltimately it's the responsibility of the dialysis patient to control what they eat and drink. As your knowledge about what your son can and can't have you'll learn to mix and match foodstuffs AND pass on that which you have learned to your daughter-in-law. But to help you out here is a link to the Davita diets for dialysis.
                That's a good place to start but I am always willing to share my personal experiences. Just remember that what works for me may not work for others and personal experiences will vary. ...(Legal said I had to put that in there.) I'd encourage you to tell you son to attend the forums here. There are somethings that dialysis people can only talk about with dialysis people. The first rule about dialysis fight club, is that you don't talk about dialysis fight club. The second rule of dialysis fight club, is that there is no such thing as dialysis fight club!

                Hope that helps! See you around the monkey bars!



                • #9
                  Very interesting stuff, Grouchy. I'd heard about leaching potatoes but, not the double cook method. That makes it a lot quicker, for sure. Now, he's NOT on dialysis - but, he's stage 3. So, is the low potassium diet also something that you'd be doing if you were on dialysis? I think that my son and DIL ARE getting some recipes from here. I've been trying to point them here, for sure. I know everyone is different. But, y'know...Moms. They want to know EVERYTHING and fix EVERYTHING! LOL!! Take care of you, Grouchy! I appreciate you!!


                  • #10
                    Hey Grouch! I wanted to tell you: I'm stealing your joke from yesterday: "QUESTION: What is the difference between God and an arrogant doctor?
                    ANSWER: God does not play doctor. #JokeOfTheDay " That's funny!


                    • #11
                      Yeah, they want dialysis patients to have as little potassium and phosphorus as you can. None if possible. That mixed with a low sodium diet can make things pretty bland. It took me a long time to find foods that I like to eat that I CAN eat, but you get used to it after 6 or 7 years. LOL
                      Keep on trucking mbrinkman, keep on trucking!


                      • #12
                        Hello everyone. Wishing everyone a nice and healthy day.
                        -evelyn billy


                        • #13
                          Originally posted by precious6045 View Post
                          Hello everyone. Wishing everyone a nice and healthy day.
                          -evelyn billy
                          Thank you Evie! ... Ditto


                          • #14
                            Happy Friday everyone! Things have been really good here the last few weeks. Feeling good which is always better than feeling bad or at least better than a kick in the throat. Always nice to get comments from folks! So glad I can help you out and maybe brighten your day a bit. Depression is a very real symptom of kidney failure, and I wish more people knew about these forums and realize that they are not alone and that others are going through the same thing. Please pass the word along to your fellow dialysis people at your clinics! Let them know that there's other people that understand!

                            Tonight I am venturing out to a bar to have a beer.... and I mean a single beer. Not that I'm watching my fluids so much just that one beer is enough and I'm done. Ready for bed. With my COPD I'm only good to go out for about 45 min anyway, but I think it's important to try to live as normally as possible, if at all possible. I have not been out to a bar since before my first child was born and he turns 13 in November. My home care worker is taking me. She was my friend for 3 years before she was my homecare worker so our relationship as friends, worker and client, is a little more relaxed. She's awesome, and takes very good care of me. I'll let you know how my night turns out!

                            Be excellent to one another and your pets.

                            For Halloween, a Dialysis patient showed up wearing a hospital robe and a Devil's mask. The dialysis tech asked, "What does that costume represent?" He replied, "The patient from hell." His Dialysis tech then interrupted and noted, "I thought you were supposed to dress as something you are not." #JokeOfTheDay

                            BONUS JOKE: Q: What do you get when you eat peanut butter and baked beans together?
                            A: A fart that sticks to the roof of your butt.
                            Last edited by Grouch123; 04-06-2018, 04:51 PM.


                            • #15
                              Enjoy that beer and getting out. I used to own a bar in Montana. I really miss the entertainment of just people watching, I never have been much of a drinker, bar owner was hard work but fun.


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