Thanksgiving 2017

A few boring posts about regular life get on here, too.

Thanksgiving 2017 was a few hours spent eating with family and friends at my sisters’ and Mom’s house here in Rialto.  My sister Anita is quite a cook and made delicious ham and side dishes for us to eat.  My other sister had the job of clean up in the kitchen.  We chatted and ate, then watched the new Jeff Dunham Netflix video.  Pretty funny.  Then onward home.

We party hardly, I think.

32nd Wedding Anniversary Dinner

Today, November 19, 2017, is our 32nd wedding anniversary.  We celebrated by getting dressed up and going out for a romantic dinner just the two of us.

We went to Black Angus in San Bernardino. The appetizer was artichoke dip with chips. Victor had baby back ribs.  I had the pork chop.  We shared a dessert of white chocolate cheesecake.  Iced teas all around to drink.

The happy couple!  We were taking serious pics for fun tonight.

I never thought I would find someone who I would fall in love with and could live with for such a long time.  It seems some days like it has been forever and other days it is like just a few days together.

Here is love poem I wrote for him.

He loves me beautiful
I look in the mirror
What do I see?
I see me
A middle-aged woman.
Blonde, blue eyed.
Scars running up and down
And all around.
In my eyes the beauty is gone.
There is a woman left standing
There in that mirror.
A strong, tough woman.
But when I am in his arms
He loves me beautiful.
He kisses the scars
And the places that have been hurt.
He makes me believe
Once again
I am beautiful.
He sees inside me
Past my hurts.
He reaches past the defenses.
He sees me through love’s eyes.
He loves me beautiful.

 

Thoughts

I wrote this piece on Facebook last year.

It seems we live in a connected world, instant messaging, computer screens on our dining tables, computers in our phones, we can call anyone anywhere and take a video while we do it. Seems that while we have become more connected we have allowed ourselves to become less connected with one another. We talk and communicate to the technology, not to one another. We see opportunity to take one another to task for behavior that has been around a long, long time and has still not been corrected. We argue to make our own points and rarely listen to one another’s real words and meanings. The meanness and bad attitudes we see, get videos daily and then are posted to social media for over half the world to read. Things go viral whether they really deserve our time to read and see or not. I think young children get along until they reach the age where they are exposed to our world through their parents’ attitudes and the social media. More and more we are allowing social media to speak our loud mouths. Discrimination has been around a long, long time. We are all immigrants through relatives way back in America. As each set of immigrants made its ways to the US it too was discriminated against. Even back to the Mayflower and Colonial times,people were sent to the colonies to get rid of trouble makers. Well here we are many years later still dealing with trouble makers of our own. When we learn to speak with our hearts and think with our minds before saying or doing anything, then we shall become smarter, kinder and more creative beings.

Life is Killing Me- A Poem

Life is Killing Me
Dialysis is not killing me.
ESRD is trying to kill me.
Neither is going to get me yet.
Life is killing me.

I hope to die one day gracefully.
However I don’t think it is going to happen.
I will probably go out in a blaze of glory.
All rushed and pushed to my destiny.
Twenty minutes late because someone wanted something
And I had to stop and answer the question or request.

Yes, Life is slowly killing me.
They say the average life expectancy of a woman is 85.
The life expectancy of a man is 80.
I don’t know why women outlive men.
Maybe it has to do with hormones or paybacks.
Maybe it gives the women some time to themselves
After having man around for so many years.
I know I will want some silence from the nightly snoring one day.

Yes, life is killing me quickly.
Diet has become a number one killer now.
People over drink, over eat, and overindulge in everything.
Just look at me.
Food is supposed to be our friend, but everywhere you look it is portrayed as the ultimate enemy.
Some foods are bad, some foods are good.
They change the titles on them every day if not every hour.
It is a struggle to maintain your sanity in this world, much less maintain your weight.

Yes, life is killing me!
Stress is a cause of many, many maladies in the human body.
People stress other people out.
Work stresses people out.
It leaves one drained at the end of each day.
There are bosses and especially those coworkers
That know everything
And they assure you that you don’t know anything.
Stress kills.

However, life is killing me!
I see some happiness.
I see some sadness.
I see children growing and learning.
I see adults still growing and learning.
I see joy.
I see sorrow.
I see empathy and sympathy.

I see that life is slowly killing me.
But then
What the hell!
If the spectre of death is going to ride shotgun
With me.
I am going to give him one hell of a ride.
We will show up at the pearly gates and he will say:
Holy cow! Here she is!

Yes, life is killing me.
But then what isn’t?

Copyright K. Soto April 8, 2008

Fire

This was written several years ago after my husband had been in an accident at work and ended up with an amputation of his left leg.

Fire
I don’t really have an inspiring speech tonight to give to you all.
I hope what I am going to tell you tonight will have a positive effect on you.
Maybe it will even get you thinking.
My topic tonight is fire.

Margaret Wise in Soulforge said: You choose voluntarily to go into the fire. The blaze might well destroy you. But if you survive, every blow of the hammer will serve to shape your being. Every drop of water wrung from you will temper and strengthen your soul.

I absolutely agree with what she says
My soul feels like is has been on fire for the last two weeks.
Two weeks ago my husband was injured in a work related accident. It has been a time of fire for us. I have watched as a perfectly healthy man has had to adapt to being handicapped all of a sudden. He has had to learn new skills and relearn how to do old skills. Just watching him get up to go to the bathroom was a painful experience.
I have had to learn new things too.
How to not help when it looks like help is needed but it is not wanted.
How to stand back and let him struggle.
I had to rethink my thinking.
Our lives are going to be different.
We have walked into fire, not by choice, but through life’s circumstances.
Every blow of this hammer has forged us into a stronger relationship.
We both know that we have to survive for each other.
We lean on each other for support in our personal times of fire.
Sometimes we even dance within the flames together.

Dialysis Advice- A Few Things I Have Learned

I had someone ask for advice on making it 19 years on hemodialysis. Here is some advice on dealing with a chronic illness:

No matter what make your dialysis appointments. You will feel better eventually and it will show your teams you are following medical recommendations. I have not missed one in 19 years. Missing dialysis will affect your chances of getting a transplant.  They will consider you non-compliant to your medical teams’ prescription for dialysis. You can talk to your medical team about changing times, days and hours. Explain your reasons, look at input and output, look at your blood work together with your team. Then make the decision that is best for YOU.

Extend your time if possible to get to those middle molecules of potassium and phosphorus. Remember kidneys work full time 24 hours. Most centers are doing quickie treatments of three to four hours three days a week. Look into doing nocturnal dialysis. It frees up your days and you do dialysis at night. If it is available in your area. Or look into PD if you can do it. Or maybe doing home dialysis

Your health team should be supporting you, especially your dialysis center team. Ask the dietitian for information on diet and lifestyle changes you can make to help with daily eating choices.  Talk to the social worker if you need something.  Talk to the doctors and nurses who are there to help you.  Most of all LISTEN to what they tell you.

Manage your eating in a well balanced way.Make one lifestyle change in the way you approach food every two weeks. Clean out cupboards of junk food, drop one starchy carb from your eating plan, make a weekly menu including fast food or eating out.

Lean into your online support groups for help.

Get checked out by all of your medical team. Every one of the doctors who are going to have to clear you for transplant and keep those records and appointments up to date.  Keep track of things in a small notebook or online.

Be knowledgeable. Know your medical history and prescriptions. Be able to discuss it with doctors.
Gain knowledge and be able to ask questions of the doctors they are involved with.

Keep a log of names of doctors, procedures, who did what and when, that way when you meet a new doctor you have records handy and can discuss names and dates knowledgeably. (wish I did this)

Join a support group.  Be careful. Find one you are comfortable with. Use it for support and information as you go through the medical things. Ask questions.  Know they are support, not medical doctor’s truth.

Search for information on the internet but only as you can take it. When is too much stop looking. Take a break from info overload.  Process what you know.

Do something fun for yourself everyday. A joke, a smile, a game, tea, chocolate, whatever makes you happy for a few minutes.

Know that people act weird around someone who has an illness. Sometimes friends are not around anymore because they do not know how to deal with it.

Do not allow the illness or its treatment to become all-consuming in your life. It is going to take up parts of your life and sometimes it feels like it has become everything, but know these things are not your life.

If you believe in prayer, pray every day. Use your beliefs to help you through tough times.  Meditate to calm your brain and body.

Let little stuff go. “In the end it is all small stuff anyway.” Little stuff can cause great grief; sometimes you have to let it go.

Being beyond tired is a place you may feel you are often, rest…take time to let your body heal.

Remember some days have to be taken one second, one minute, one hour, one day at a time.

Dialysis treatments # 2966 and 2967

A Dialysis Day in My Life

9:00 am Wake up and get shower and dressed.

10:00am Get snacks ready for dialysis treatment time. 2 cheese sticks, 2 rye crackers, cut up apple, baby carrots or grapes. Put ice pack into bag, place snacks into bag.

Make sure everything is ready to go.  Into the bag: Headphones, warm pack, extra tape just in case, Ambien pills, Kindle, and Iphone. My bag of chair stuff is in the car: sheet for chair, blanket, pillow and neck pillow, foam pad for chair, and an extra change of clothes. I look like I am running away from home withall of this stuff.

11-12:30 Do what needs to be done at home, email and Facebook time.

12:30pm Leave house for lunch before dialysis

12:45-1:35pm Carls jr lunch- Charbroiled chicken sandwich, fries and a Diet Dr. Pepper. This is my usual lunch. It does not upset my tummy during my dialysis.

1:45 Arrive at dialysis clinic. Bathroom call, get weight,temperature, BP and set up in my chair for dialysis.

Dialysis machine. All computerized now. Notice the name WEED, for this particular treatment.  They use four letter words to name the machine for each treatment.

2:00pm-8pm- 2 -16 gauge needles into my arm and the blood is running through the machine. 6 hours treatment time. I get Benadryl and anti nausea meds while on the machine. Iron usually on Wednesday. Epogen is given as needed according to blood work.  

Blood work is done once a week, as well as a big results oriented blood work once a month. I receive a lab work report card once a month and anytime I ask anyone for results.

While on dialysis: I sleep for an hour or two. I watch TV. I play on my Kindle or read a book. Sometimes I get antsy from sitting there for so long. I usually last the entire six hours. There are some treatments when I am done, just done early. Staff will take me off when I ask.

8:00pm I am off the machine and holding my needles sites so they stop bleeding, usually a ten minute wait. Then I am off to home between 8:15 and 8:30pm, barring no catastrophes- bleeding or low BP.

8:30-9:00pm Home and dinner for a very hungry person. I amusually hungry when I get off of dialysis and need to eat asap.

9:00-12:00 pm- Home usually on my computer reading email, playing Facebook games, watching Netflix with hubby.

12:00am Bedtime.

This is MWF of every week.

I get ready to go to dialysis.

I go to dialysis.

I am at dialysis.

I come home from dialysis.

I recover from dialysis.

2965 Dialysis treatments

Counting it up to 3000.  I think on January 24th it will be 3000 treatments.  Time for another little party.  The cupcakes were a smash hit at dilaysis this afternoon.  Little treats to brighten everyone’s day.   A few “Nineteen years!” exclamations were heard.  Next year a big party to celebrate 20 years!

I am going to put  a new number up after every treatment until 3000!  I plan to have the staff Conga line with me through the center.  I will have It’s my 3000 treatment sign when I walk into the center.

 

Favorite Internet Sites

I am on Facebook at: https://www.facebook.com/ksotoemail

My blog: www.Lifenotonthelist.com

www.ihatedialysis.com a site for all phases of kidney and dialysis patients. Forums and Facebook page available. This site quickly became my second family and a major part of my support system. There have been ten reunions in Las Vegas of people from this site.

http://www.danoah.com This site has hilarity from one end to the other. A daily round up of memes. He asks questions and people answer them. This page posts new things regularly.

www.RSNhope.org A site for kidney patients. Mostly transplant related topics. Lori Hartwell does a  podcast. Lori Hartwell is the owner of the site. She hosts a Renal Prom for teenagers who have ESRD all stages every year. It is a beautiful event. She fundraises for the event and asks for donation of dresses. There is also a yearly essay contest.

https://alison.com A free university of courses to take online . Most of it is taught through powerpoint presentation format. There are lectures and quizzes throughout the coursework. A good place to keep the brain drain from happening.

www.ancestry.com The place to research your ancestry. DNA kits are available. I have taken part of my Dad’s family back to the beginning of time.

https://www.rattle.com A poetry place. You can submit in contests and get a daily poem sent to your email.

www.amazon.com Glorious shopping on the web.

www.gocomics.com Collections of the best comics on the web.

http://www.fowllanguagecomics.com A comic about parenting. Hilarious.

http://www.ostomy.org/Home.html   The main page for the ostomy association.   Forums are available. There is a search for local ostomy groups is available. I have had a urostomy for 40+ years.

http://www.wwe.com World Wrestling Entertainment   I love watching wrestling. I find it amusing. This site will take you to information on wrestling matches and wrestlers.   My favorite wrestler? Randy Orton.

www.netflix.com   Movies and TV shows galore. Netflix and chill.