A Done List

I learned this week from Noom is if you feel overwhelmed by your To Do list, sit down and think of all the things you have done and make a DONE list. List all of things you did today or yesterday or this week. They asked for a list of ten things. Ten things on your list leaves you feeling good at your successes.

Here is my list from a few days ago.

“DONE” List

  1. I went to my dialysis treatments all three days.
  2. I stayed my entire 6 hour treatment time.
  3. I cooked three good meals this week.
  4. I gave up eating French Fries during lunch.
  5. I have added more green foods into my diet.
  6. I made a list of all the red foods I have been eating.
  7. I went to bed a little earlier each night.
  8. I did laundry this morning.  (Remind me to get clothes out of the dryer.)
  9. I have written on my second novel this week.
  10. I talked to a friend over the phone for an hour.

Do this every now and then to give yourself a good pick me up!

Recent Art Pieces

I have been working on art pieces. I thought I would share three recent ones. The first two are layering practice pieces. The third is a design Rhino. Eventually I will color the design rhino.

1st layering art project
Second layering art project
Design Rhino ready to be colored

Working on art work and writing help me to not think about my aches and pains.

Life is trying my patience

I have an official diagnosis of Fibromyalgia. My all over body pain has a reason to exist now. I am on an nerve med to help calm them down and lessen the pain. I hope it works.

The fistula in my arm needs to be looked at. The dialysis center cannot run an access flow on me. I saw Nurse L. She arranged an ultrasound for me on the 12th at 5:15 in the evening. I am hoping it is all okay.

I am on antibiotics for a kidney infection.

My blood pressure is staying up. That is good. Dialysis is a lot easier without 100 blood pressures taken over my time there. we are all keeping an eagle eye on it. Kaiser had me in for a high blood pressure check one day a few weeks ago.

I am still writing and making art pieces. Life is an adventure. I do see it ahead.

Soon, a beach weekend is coming soon!

Pain

I was reading an article that said to start your day with a positive attitude. I agree and have been trying this since January. For a while my mind was “No!” “Don’t want to get up.” “No.” I had to change it to “I am awake.” to getting up with a “Yes” attitude. I would say I have been positive getting up about half the time since January.

Pain is a large part of the negative attitude towards waking up. It hurts to move when I get up. It affects the brain and the way I react. I understand why people with chronic illness with pain sleep a lot. I have decided to try three things each morning.

  1. Put pain relieving cream on the sore spots.
  2. According to how I feel after that, take pain meds.
  3. Move around a little. Stretch a little to get the blood moving.

I hope this new routine will help the pain and help me to have a more positive attitude.

I do manage to lose myself in my writing and art work during the day. The pain is kept at bay as long as I am working on something. When I finish working, I am hit with pain. I take a heavy duty pain killer. Even then, it is not gone all the way.

Due to being on dialysis the options for pain meds are limited. I tried CBD oil. It did nothing for me. The roll on pain reliever helped a little when rubbed on the skin.

It is an interesting way to live. I am trying to do things and keep moving. It’s hard.

An article to read from The Mighty.

Dialysis Patient’s Prayer with discussion from 2006 ( Copied from my posts on Ihatedialysis.com 2006)

This was written by me in 2006, after being eight years on dialysis.

Dear God:
I am looking for a normal life. When can I have one?  
Is it normal:
To go to dialysis three days a week?
To have people who know more about your medical records than you do?
To have the left arm punctured by two needles that look like half penny nails three times a week?
To feel tired all the time, I mean really, really tired?
To have to leave my house and go for “treatment” three days a week?
To see a doctor at least once a month whether you want to or not?
To have your life scheduled around dialysis three days a week?
To have to plan vacations three months to a year ahead of time so you can schedule “youknowwhat”?
To have to watch every morsel of food that goes into your mouth?
And to have someone checking up on you while you eat: well meaning family or friends?
To be thirsty all of the time? Sometimes I feel like the Sahara Desert.
To not be able to drink the large size of anything?
To miss diet Coke and Dr. Pepper?
To stare at a banana longingly in the grocery store and walk away from it?
To vaguely remember what a potato chip tastes like because last time you ate some you threw them back up?
To eat ice chips all  day long? (Go ahead offer me an ice chip.)
To gain 3-5 kilos body weight in two to three days?
To have to run from work at a certain time because you can’t be late to dialysis?
To get sick every now and then and end up in the hospital?
Knowing your death is coming and will probably be dialysis related?
To be told horror stories by other people, who are not on dialysis. but think you should know about it anyway?
To know the nurses and techs by name when you see them in the unit but not recognize them without their uniform in public?
To have blood work done every week and get results once a month, and then be told to watch what you eat and drink? Like I don’t know this already?
To want to run around screaming your head off because nobody understands but the people at the message board IHateDialysis.com?
To want to strangle people with your bare hands at their insensitivity, especially people who should know better? (Drs., nurses, techs, your spouse, children, mother)?
To know deep down that if I stopped to think about all of this I would run screaming in circles and need a padded room?

I don’t even have words to end this prayer.

Katherine

A dear friend who was on dialysis wrote an answer back to this prayer.

Dear God:
      I am looking for a normal life. When can I have one?  
Is it normal:
To go to dialysis three days a week?  
  *Thank You God for dialysis, it is better than being six feet under in a wooden box.
To have people who know more about your medical records than you do?  
  *Thank You God for those who care enough about me to know more about me than i do.
To have the left arm punctured by needles that look like half penny nails six times a week?
  *Thank You God for the techs that are trained to do this.
To feel tired all the time, I mean really, really tired?
  *Thank You God for the strength to open my eyes and see the sunshine and a little bit of strength to go outside and smell the roses.
To have to leave my house and go for “treatment” three days a week?
  *Thank You God for creating the clinic for me to go to “try” and make my life as healthy as it can possibly get.
To see a doctor at least once a month whether you want to or not?
  *Thank You God for those drs. who went to school and studied to help make sick people such as myself feel better.
To have your life scheduled around dialysis three days a week?
  *Thank You God for giving me a life to schedule anything anytime, period.
To have to plan vacations three months to a year ahead of time so you can schedule “youknowwhat”?
  *Thank You God  for giving me the ability to take a vacation, even if it is for a couple of days or even if i have to plan it ahead of time, at least i am able to take one, i know there are many out there who cant, AND THEY ARE HEALTHY!!!
To have to watch every morsel of food that goes into your mouth?
  *Thank You God for giving me even the little food i can eat.
And to have someone checking up on you while you eat: well meaning family or friends?
  *Thank You God for my family and friends who care enough about me to watch over me.
To be thirsty all of the time? Sometimes I feel like the Sahara Desert.
  *Thank You God for ice chips
To not be able to drink the large size of anything?
  *Thank You God for creating the small glasses too.
To miss diet Coke and Dr. Pepper?
  *Thank You  God for the clear sodas and the water,  Thank you for what we CAN drink.
To stare at a banana longingly in the grocery store and walk away from it?
  *Thank You God for the willpower to walk away from that that i cannot have.
To vaguely remember what a potato chip tastes like because last time you ate some you threw them back up?
  *Thank You God for showing my body how to reject all that is bad for me.
To eat ice chips all  day long? (Go ahead offer me an ice chip.)
  *Thank You God for the  Sahara Desert cuz without ice chips i am sure that is what i would feel like.
To gain 3-5 kilos body weight in two to three days?
  *Thank You God for the machines that are able to remove the body weight as i put it on.
To have to run from work at a certain time because you can’t be late to dialysis?
  *Thank You God for the ability to work even though i am ill and thank my job for keeping me on even though they know my illness.
To get sick every now and then and end up in the hospital?
  *Thank You God for the hospital and its staff for being there to care for me when i need them.
Knowing your death is coming and will probably be dialysis related?
  *Thank You God for giving me all the sunrises, sunsets, flowers, birds and all the beauty the world has to offer, i will cherish it until my dying day.
To be told horror stories by other people, who are not on dialysis. but think you should know about it anyway?
  *Thank You Fod for giving me the ability to hear what other people have to say,  although it may not be something i want to hear, maybe they just need to vent and get it off their chest or maybe i can offer some helpful advice.
To know the nurses and techs by name when you see them in the unit but not recognize them without their uniform in public?
  *Thank You God for the nurses and techs that have become my friends and although i may not recognize them outside of the clinic, they recognize me and ask me how i am doing.
To have blood work done every week and get results once a month, and then be told to watch what you eat and drink? Like I don’t know this already?
  *Thank You God for those who are watching out for me and letting me know if and when i am doing something wrong.
To want to run around screaming your head off because nobody understands but the people at the message board IHateDialysis.com?
  *Thank You God for the people and the message board at Ihatedialysis.com, life has been so much easier just knowing i am not alone.
To want to strangle people with your bare hands at their insensitivity, especially people who should know better? (Drs., nurses, techs, your spouse, children, mother)?
  *Thank You God even for those who make mistakes, they are only human too.
To know deep down that if I stopped to think about all of this I would run screaming in circles and need a padded room?
  *Thank You God for letting me have a clear mind so i can still be able to think straight.

I don’t even have words to end this prayer.
  *Amen is always a nice word to end a prayer of any kind.

Katherine
  *Goofynina
Thank you for letting me rant.  I had no idea it had built up to that point.  You can add to it if you want to.  
  *Thank you Katherine for helping me remember just how good i have it.  God Bless

She has passed and I miss her sweet, patient personality. She had a love for all things except clowns. Of course I answered her back and called BS on her post. I owed her a better explanation than one word BS!

 I felt my last post was not enough of an explanation.  Thank you Epoman for your words of wisdom. It is true sometime we just need to rant.
    I know we are all going through different phases of coming to grips with ESRD or what ever type of disease put us onto dialysis.  I am in the “Been doing this crap so long I feel I get to rant and rave about it” stage.  I also understand where Goofynina is coming from.  I too had a stage where everything was great and I thanked God for everyday I was alive.  Now I am just old and grumpy, I guess. 
Here is my answer to your answers.

God did not give me this disease, and he certainly does not want anyone to suffer for his sake. If the medical profession would get off their collective asses instead of trying to make a profit off of the patients, then we would not need all of this medical faldolra.

If I get one more tech who infiltrates my arm and hurts me I am going to scream! Talk to Rerun about this one.

I open my eyes and am tired in the morning and tired all day long. Where did the time go to plant roses and smell them between work and dialysis?

Healthy? Dialysis does not promote a healthy lifestyle.  Just look at our food and drink choices. PUUHLease!

Just ask anyone who has had a bad experience with an experienced, trained well meaning doctor.  Sometimes they suck! Ask Kevno about this one.

I have to schedule everything now around dialysis; even parent conferences for work; and even time to spend with my family and friends;  even doctor appointments ( and they know I am on dialysis and put appointments right during that time!).

My vacations are full of driving to dialysis, sometimes up to two hours away. Figuring out when to leave to get there, then getting there and putting up with new people trying to get to know me quickly so they can treat me.  Of having to watch fluid because it is an extra day between treatments, and giving up almost a whole day to dialysis, when I am supposed to be on vacation with the family.

Give me strength! I hate the renal diet. It is boring. I can’t eat that way so I don’t even try. The same family and friends who will rant and rave at you if you eat something you are not supposed to. Or the kids who take the banana away from you and say no. Or the special friends who prepare dinner for you of things you cannot eat.  Or the special lunch for teachers that has chicken, beans, and potato salad, of which you can only eat the chicken. The same family that will not go out of its way to prepare something you can eat, so you don’t really eat anything, or you eat it anyway.

My jaw now aches from eating ice chips. I have cracked a wisdom tooth from it.  When I am starving/ craving for a big glass of something to drink, those small glasses just don’t do it for me.Thanks a bunch for the sick stomach I get when I drink clear sodas.  I just love the nauseous feeling being with me all day long.  It is such fun!God did not give me that will power. I earned every bit of it! I used up what little energy I have had to walk away from things I cannot have.  I choose on a daily basis.Well now, throwing up potato chips is sure one hell of a way for my body to choose for me!

Half the time I feel like I live in the Sahara Desert. The summer California heat does not help either, when it is 101 in the shade.

Yes, thank you for a disease that puts killer water around my heart and lungs every day of my life that can only be removed mechanically through a machine because my internal system failed!

My ability to continue working just means I am stubborn and will not give up on myself and my career.  They had to keep me on.  No one else wants my job.

I spent six sleepless nights in the hospital, then had an angiogram, then was sent home with thirteen medications to take and little or no follow up.

God and I don’t speak a lot these days. I have talked with his angels already and came back by my own choice. I have already had my dying day.

I know that my life touches other peoples lives through what I say and do. I try to keep my rants to myself or post them here where they may do some good.

I hate having people in the medical profession recognize me outside of their environment. I should not have to know this many people who know me because I am ill.

TTTTHHHBBBBTTTT! To all the people who think they can control me and what I do. Good Luck!

This board has taught me I am not alone. When I want to rant, I can.

I watch people who take care of me at dialysis so mistakes are not made.  I should not have to watch them carefully every time I am on dialysis. A family member should not have to fight for what is correct treatment for anyone on dialysis. We should not have to go look it up on the internet, because the medical profession should be free with their knowledge about your disease.

Who can think straight when you are on dialysis.  Sometimes I just want to run screaming out of the building and that is before I even get there. Much less have the two inch nails driven into my skin and take it with a smile.

Like I already said God and I don’t speak much anymore. Besides this was a never ending rant/prayer, so amen just does not fit here!

Katherine

Why is lifenotonthelist.com here?

Another list I am not on.
Another list I am not on.

Lifenotonthelist.com is my answer to the doctors who told me I could not be put on the kidney transplant list do to a medical issue. I decided to make my life the best one I could as a permanent dialysis patient.

It is not an easy life with dialysis three days a week for six hours each treatment. Low blood pressure has become my fight at dialysis. Hospital stays that are becoming longer and more frequent. Recovery that takes longer after being knocked flat. All over body pain and sciatica hip pain all day.

How do I deal with it? I write things down here in the blog to encourage other dialysis patients. I write article for other people to use and publish. I write poetry. I make art projects. I paint , color, use markers and take classes. I meditate when I can. I write. I wrote a novel this year and am halfway through my second novel. I am waiting for creative editing from my publisher. My life takes a turn to being a writer.

What is in the future? My novel published. A poetry book put together and entered into contests. My second novel taken through creative editing. A book of dialysis articles written, collected and published. This blog to grow and keep going.

I will keep dialyzing to live, not living to dialyze!

An Update

This should say: Hospitalization is BIG Pain in the Ass!

A hospital visit hit my July 4th weekend.  Six days as a matter of fact, four in the ICU plus two on a step down floor.  

Ended up with low BP, low cortisone levels, and a kidney infection.  They gave me new meds for the low levels, all kinds of IV meds for the low BP, and antibiotic for the kidney infection.  They watched me like a hawk for four days.  

The ICU nurses said I was an easy going patient.  Did not need much and was content on my own in my darkened room.  I was happy no one was touching me repeatedly.  I slept pretty well during the nights.

One adventure:  I had a central line put in because I have become the  “hardest stick known to mankind.”  When they were going to step me down to the next floor, an ongoing argument was started.  I was not going without it and they wanted it out.  Eventually i won the argument by saying no.  Hubby backed me up, too.

I came home last Thursday JUly 11th.  I am feeling better day by day.

I saw my internal medicine doctor his first words to me were.  “I see you tried to die again.”  I was shocked.  This last time was not as rough as other times in the hospital, but then I did not pass out in the ER this time.  I should have known when the ER doc talked to us about end of life stuff.  Did I want full codes.  I told them no full codes.  Minimum things done for me if I am on my way out of this planet.  I am doing okay Looks like my heart valve is okay, does not need anything done to it yet.  He checked my cortisol level and is making a referral to a endocrinologist to see if we can get me off the hydro cortisone med or if they recommend him doing it slowly and carefully.  If my urine starts looking funky with blood or changes color again, I am to email him for cultures and meds.  

He and I both agree the episodes in the ER and hospital are getting closer together and more serious each time. I am to keep an eye on things happening to me.

I am still working on my art. I am currently taking an Udemy.com class on relaxation exercises. It has been fun using different materials to make things. I signed up for another Determinedtoshine.net class on what to do with your coloring pages when you finish them. It will be nice to make a few things to give away.

I am currently on chapter 16 of novel 2. I entered a few poetry and fiction contests through Submittable.

The blood pressure is better at dialysis and we shall see what it does as time goes on. Everyone is keeping an eye on it! I just take the upper on dialysis days and hope it works. Sciatica in my left hip is getting a little bit better. I am moving better. It still raises heck when I do too much.

Keep going. Just keep dialyzing to live, not living to dialyze!

Ten Things to Do While on Dialysis

The hours can seem long in a dialysis center.  Bringing something to do will keep you from being bored and keep your mind busy.  Take these ideas and use them.  Some will fit you and some will not.

Kindle/Laptop/ or other Device: Download, games and books to the Kindle.  Spend your time enlightening your mind or playing games for fun.***

Photo by Adrienne Andersen from Pexels
Ten things to At Dialysis Article
lifenotonthelist.com

Read.  Bring a book or use your Kindle to download books. When I read time slips by quickly.

Journal.  All you need is a pencil and pen and a notebook; or use your computer. Write your memoirs while you sit in the chair for hours.  Write that book that has been in your head for many years.

Puzzles. Soduko, word searches, thinking puzzles books will help keep your mind sharp.  Buy them at your local 99 cent stores.

Podcasts.  You can download most onto your kindle or find them online. I like:

The Thrilling Adventure Hour– comedy, old fashioned variety show.

Wolf 359- science fiction story.

Do It Scared– uplifting talk and advice. 

Find ones you like or try a random podcast.

Draw.  Drawing equipment is a small clipboard, paper, a pencil, eraser, and colored pencils or crayons.

Color. Buy an adult coloring book.  Get a set of colored pencils.  Take your time coloring a page. 

Crochet or Knit.  The yarn can be in a plastic container with a small hole in the lid with the yarn poked up through to the crochet hook or knitting needles You can knit and crochet with little space. Everything is in the container to and from the center

Picnic. If your center lets you eat while on the machine, bring a picnic lunch with food you like. Pack them in a picnic basket or lunch bag along with a large napkin and a checked tablecloth.  Put the tablecloth over your lap and have a picnic. **

Meditate. Relax your mind. Turn off from your worries.

Sleep.  Let your body rest. A lot of dialysis patients sleep during dialysis.

Notes:

** Clean up after yourself after each dialysis center.  Make sure your materials all are in their containers and trash is picked up before you leave.

***Be courteous to those around you turn the volume down on your devices when using them.

***Remember to bring a power cord or charger and cords for your devices.

*****Actually there are eleven things on the list but sleep does not activate the mind, although it can help it to rest and relax.

I dialyze to live. I don’t live to dialyze.                                   Katherine E. Soto

June 2019

My New Art

As you all know I dally around in art. Usually I make a big mess and then poof it come out into something I like. Here is what I created today with paint and markers.

I turned it into a birthday card. It says: A birthday Butterfly! Winging Birthday wishes to you!