I Choose to Begin Again

     Usually we begin new things at the beginning of the New Year. We see the beginnings of life start over each year. We believe we can begin again, start over, and become new or we can keep doing what we have been doing, run the same roads, and repeat our life lessons.  We pray things will be different.

      When we begin again we choose to try to be better each day, each hour, each second. We determine our own way and our own stages in life. We struggle, we reach, we pray, we agonize, we shrink, and we grow. We find joy and happiness sometimes. Other times we weep and cry and pray for strength.

Sometimes we struggle into endings we did not foresee.  The endings can change our lives for good.  This often has negative influences on our lives.  We see beginnings as positive; however, they too, can change our lives forever.

    So what does this have to do with a dialysis patient?  Every time I go into the dialysis center I am choosing to begin again.  Twenty years of three days a week of choosing to begin again. 

Why is it? (Dialysis related)

Dialysis patients are often treated as second class citizens because they have kidney disease and are on dialysis. Dialysis centers are stripped down to basics in order to provide fast and furious treatments. Get the patient in, get them treated, and get them out as soon as possible. Make sure not to use too much equipment with the patient . We have to watch that profit margin carefully seems to be the massive dialysis corporations thinking.

Twenty years ago when I first began dialysis paper sheets were put on the chair for each patient. Warm blankets, as well as extra blankets, were kept for patient use. There were lockers for patients to leave their things in. Some dialysis centers used to have ice machines. Cookies and snacks were served by staff at least once a week. Games were played to help pass the time. Patients would chat with one another. Magazines and books were brought in to be shared by patients and staff. Techs and nurses would come over and talk to the patient when they had nothing else to do. Techs and patient would often take care of the same patient for weeks at a time. It felt more like the patient was wanted.

Twenty years later there are no paper sheets, bring your own. Bring your own blanket. Bring your own headphones to use for the TV. Bring your own snacks. Haul your own stuff into the center in a large bag, no more lockers to be used. Patient safety was the reason given. No ice machines anymore. No games are being played. Hello and goodbye are the only chatting I hear going on. The tech and nurse will talk to you while being put on and off the machine Techs with nothing to do, do not come over and sit with patients and chat with them. The idea seems to be not to get close to patients in case something happens to them. They are also moving the techs and nurses around the clinic so the patient gets someone new to work with each week. (God help the patient if they do not get along with their new person.)

Dialysis patients are not a profit making commodity. We are people with a harsh disease that only gets progressively worse. Cancer can be cured or put into remission; kidney disease is relentless with dialysis or transplants as treatments, not cures.

Kidney disease needs to be recognized as a disease worth having; and being researched and discussed.

Dialysis patients need to be recognized for their relentless courage to live.

Dialysis 2019 Thoughts

Twenty years on dialysis as of November 2018, Sometimes I think I will go absolutely mad doing it. Three days a week for six hours every week, no rest from it. Just keep going to stay alive.

Three days a week for 52 weeks a year 52*3= 156 treatments a year.

20 years= 3120 treatments.  Over 6000 needles. 

156* 6 hours each treatment= 936 hours of dialysis a year.

X-rays, scans, ultra sounds, minor surgeries, interventional radiology, major surgeries,hospital visits.

Illness, infections, sepsis.  Antibiotics, medications, vitamins.

Life with an invisible illness.   

If I stop to think about it all; I would probably run away as fast as I could screaming.  Most days I just handle things and do life.

When people ask me “how do you do it?”  My usual replay is “To dumb to know any better.”   

I often have to take life one second, one minute, one small increment at a time.  “Okay, there was one second, breathe again, okay there is another one.  Hey a whole minute went by and you are okay.”   I find myself five minutes later, still okay.   Tears and frustration may still be around, but I am still okay.  

The Purpose of Life

The Reader’s Digest asks the question: What is the purpose of life? So today’s blog will attempt to explore this idea.
The purpose of life is to connect with people and share your lessons or be a lesson in someone else’s life. Yes, you can be a lesson to someone else by being who you are and going through what you go through. Sometimes people are in your life to give lessons to you. Lessons in patience, love and life. Sometimes the best people, the well intentioned people, give the worst lessons. I find, usually, those of us bumbling our way through life one day at a time, end up being lessons quite often.
The original purpose of life was to procreate and continue the species so it would survive down through the centuries. I think with 8 billion people on the planet, we have covered that pretty well. We now search for purpose in life, because mere survival is not enough. Some run around looking for purpose in things. Some think through to their purpose. Some look for their purpose in service to others.
Find a lesson, be a lesson, look for a lesson. Have an active purpose.

Goodbye 2018. Hello 2019

I am glad to see you go. The flu event and five days in the hospital was exciting. The sciatica pain in my left hip all year has been outstanding. The naproxen has helped some of the all over body pain. I was able to function most days and do things I wanted to do. Dialysis three days a week for six hours each time has been ongoing, into 20 years. The house renovations we found ourselves in were expensive, but the house was worth it. I am hoping it all stays together. We have had only two call backs for them. One for the back room leak and one for hot water leaking in our tub. Of course the house payment went up when we redid the mortgage to pay for everything. STRS is taking one check away December 31 from my retirement. It was supplemental. This has been one year not easily forgotten.

So Happy Birthday to me on the last day of the year. With my gift of the new year 2019 , facing me, I wish everyone including those who are mine and claim Augustmy family, that which you need for 2019 and some of what you want. Plus Blessings from the Universe, as much as you can handle.

This year:
December 31: I was 55 all year. I turn 56 today.
November: 33 years married on the 19th.  Celebrated 20 years on dialysis on the 2nd.
October: We won the costume contest at the dialysis center. We came dressed as each other.
September: We celebrated birthdays of both my sisters
August: The last of the contractors and projects were finished on our house.
March through July: House renovations
March: I spent five days in the hospital with pneumonia, flu, sepsis and low BP. My suggestion is to not pass out in front of the ER intake people with a BP of 49 as the top number. They tend to take you seriously at that point.
Also do not drive yourself the ER. My family was mad at me. I was jsut taking care of business.
February: We celebrated Violet’s birthday at the Natural History Museum in Los Angeles.
January: Mom’s birthday 81 years old and the beginning of a new year.

2018 goodbye.
HELLO 2019!

52 Things

I have joined a website called The Mighty. They deal with subjects related to chronic illness. They are having a 52 things -one thing a week you will do to improve your life. I am going to try to do 52 small things this year. I am beginning my list here.

Goals

Write on this blog each day.

Step 1: Find time each day to write. Commit to it.

Step2: Use journal questions, write about the day, write a poem, write about your feelings, write about people in your life.

Step 3; Write everyday.

Putting some poetry out into the world.

Enter a contest once a month

Find your best poetry. Clean it up, edit and get it ready.

Use the email that comes for contest entries.

Keep track of the entries. Poem in an envelope with date, and where it went.

Write new poetry.

I want to eat healthier this year.

Eat a salad at least once a week for a meal.

Plan plates that are 50 % veggie or fruit/25%meat/25% carbs

Buy one fruit or vegetable to eat every day each week. Apple and bananas do not count.

Cook one meal a week

More to come as I think of it.

Take a walk at least once a week.

Start the day in a positive frame of mind.

No complaining when getting up.

Christmas Day

The day started with a shower and clean up. I dressed in my green mumu and waited for the kids to get here with Violet. MY granddaughter is adorable. Was played Christmas music and chatted. My Mom was brought over by Christy and we sat and talked. Then the gifts were exchanged. Violet made out like a midnight bandit. She has new clothes, play food, a balance bike, 2 marble run block sets. paw patrol toys and I am sure things I have forgotten about. Victor was so funny. He thinks the colors of the bags for packing are girlie. I knew I should have gotten a black set for him. He liked the grenade stool that Maria, Alex and I bought for his library. He has a new shirt and gift cards to Barnes and Noble. I received a few gifts. I have new nightgown, a Barnes and Noble gift card, a set of autographed quote with crystals to put them in from the Babylon 5 TV show actors, a dirty coloring book and crayons, a Hummel Christmas ornament, and a spice box. Danielle and Dave brought me an air fryer and we promptly made tater tots in it.The dialysis unit gave us a beautiful Christmas bag with a measuring cup and a set of measuring spoons,along with recipe cards. I had a good giggle over it.

We Skyped with Maria in Oklahoma and opened her gifts one at a time. Then we ate lunch. Ham, turkey, Dave’s famous mashed potatoes, salad, Swiss cheese and crackers, potato chips and dips. Chocolate cake from Costco for dessert. Everything was yummy. Violet played with boxes and her toys and her bike. We talked and ate. Then our guests packed up and left.

The house was quiet. We cleaned up as much as we could. I went to play computer games and watch TV. Then Victor and I opened up the IHD.com Holiday Gift Exchange presents. Victor received a beard care kit, a hat, some candy, and light house playing cards. I received candle holders, tea light candles, candy, and a nice tree ornament.

We are spoiled and tired. I played computer games and watched TV the rest of the night. Christmas was nice and I enjoyed it. Thanks to Dave and Danielle and Victor who helped with dinner and clean up. Thank you all for the gifts.

Merry Christmas and Happy Holidays to everyone who reads my blog.

Las Vegas Vacation October 7 to 17th, 2018: Ihatedialysis.com

Vegas 2018- October 7th-October 17th

Fly out of Ontario Sunday October 7th, 7:25am.  I was at the airport by 5:30a.m.   They wheelchaired me to the gate at the end of the hallway. I was grateful for the wheels.

Arrive Las Vegas 8:25a.m.  Las Vegas Southwest rep met me on the aircraft and wheelchaired me through baggage pickup and all the way to Uber pick up area.  I was impressed.

My scooter was dropped off at the condo property.

I ended up in a property update and bought more points. Sigh.  I am a sucker for this stuff.

Carolyn and Lena arrived around 3pm and we ended up in a condo that was not okay with us,..  King and queen bed.  I complained all the way up the chain of people to complain to, and on Tuesday night we moved to a better condo for us. with twin beds.

Worldmark Las Vegas Blvd. 8601 Las Vegas Blvd S, Las Vegas, NV 89123-1635

Dialysis request: MWF– October 8,10,12,15,17

Desert Inn Dialysis  5am  Oh the joys of 5 a.m. dialysis.

I have been here before. Very friendly and clean.

.2545 S Bruce St
Ste 100
Las Vegas, NV 89169

Wheel chair accessible van rental- made reservations. Pick up at condo Oct 7, drop off condo Oct 17th .  I arrived at the van in front of the condo a attempted to start it.  It had a dead battery.  This van was my nemesis.  I am short so I had to practically leap up into the driver’s seat.  Wheelers Rental.

Grocery shopping for the week. We went on Tuesday after Carolyn discovered she did not have her meds with her. We had to do an urgent care stop for prescription then Walmart for meds..  Lunch, dinners and snacks.  Watch out for nut allergy girl.  I know there is a sprouts and natural food store in Vegas somewhere.  Walmart was favorite grocery store.  She found her meds a few days later in her stuff.  They made three Walmart runs and two Ross runs while we were out and about.

Chilli’s for dinner tonight.

Monday October 8, 2018

Take time to rest and relax, recover from jetlag while I go to dialysis. 

5am to 9am was dialysis. I slept through it today.

Went shopping and then off to Outback for dinner.

Tuesday, October 9, 2018

Rest before show/Call cabs early to go to Rio.5:50pm and have dinner at Rio.

SmashBurger dinner at the Rio.

Chippendales Show – Tues October 9- 7pm  Rio  $59/ ticket

We all had either hugs or a lap dance from the dancers during the show.  Hot flesh!

Wednesday, October 10, 2018

Dialysis 5am to 9 am.

Go to the Mob Museum and Fremont St.  I can meet you at Fremont St. for lunch or dinner and shopping there.  If not too worn out we can watch the night life weirdos come out on the street.

Thursday, October 11, 2018

Sleep Late, relax and swim. Stick around condo today.

Stratosphere- Top of the World Dinner– Thursday, October 11-  4:30 pm dinner reservations

Dinner will average $100 plus drinks and tip.  For a dinner charge of 102 for prefixxe dinner the food could have been better.  The view while the sun set despite clouds was outrageous.

MJ show-Thursday, October 11 -7pm Stratosphere pick up tickets at box office    $70.00/ticket  This show was great.  MJ performed the entire time.

Lena and I developed a habit of a glass of ice with a half a glass of 7up and white wine coolers each evening.

Friday, October 12, 2018

Dialysis. 5am

Walmart trip

Ellis Island Dinner with Dave and Danielle

Saturday, October 13, 2018

IHD.com Luncheon 2pm  Bucca Di Beppo 412 E NV-592, Las Vegas, NV 89169

Great get together. We had a great time and great food.  We had a lot of food!  The restaurant serves family style in large portions so we shared across dishes.  We talked and shared stories and laughed.

Magic show-XAVIER MORTIMER’S MAGICAL DREAM

Saturday, October 13- 7pm Planet Hollywood    35/ ticket   This was vaudeville type show with a good story and magician.

Sunday, October 14th, 2018

Red Rock Tour and Picnic Lunch  Sunday- October 14

Address: 1000 Scenic Loop Dr, Las Vegas, NV 89161

Red Rocks and white rocks.  Nice drive on the loop through it.

Inn and Out for lunch and a 2nd trip to Ross.

Monday October 15th

Dialysis 5am.

 https://vegas.visitseaquest.com-  22.00 for behind scenes tour and ticket

Hours Of Operation:

Mon – Sat: 10 am – 9 pm   Sun: 11 am – 7 pm

3528 S. Maryland Pkwy. Las Vegas, NV 89169

The aquarium/zoo was cute.

 Tuesday, October 16, 201

Third Walmart expedition. I took a nap

I packed and did laundry to go home.

Wednesday, October 17, 2018

I had dialysis in the morning. 5am

Van is to be turned in by 7pm. Keys left in it and pictures taken.  People will come pick it at Worldmark.  I drove it there after dropping Carolyn and Lana off at Silver Sevens for their last night in Las Vegas.

I flew out October 17, 2018, Las Vegas 9:50 pm arrive Ontario 10:45pm.

Home at midnight and I did not even unpack. I went straight to bed.

 

Holiday Letter 2018

 

Dear Family and Friends:

This December finds us sitting in our newly renovated house. The construction crews are gone and we are living with the massive changes.  We have completely redone the kitchen, one bathroom and have a new back porch room.  The house has been painted inside and outside, with a new roof, windows, and floors.  We upgraded the plumbing and wiring also.  Our house was built around 1958 and needed upgrading all the way around.  We figure if we sell it we can do it quickly and if we live in it at least the house is nicer now.

 

Katherine is doing all right.   Using a cane due to bursitis and sciatica in her left hip.  She continues three days a week dialysis. Having been on dialysis twenty years now; totaled up the visits to dialysis and it is 3,120 visits.  She celebrated by bringing treats into the dialysis center for patients and staff.  This is a long time for a dialysis patient to be on dialysis.  She continues to be the head admin for the Ihatedialysis.com internet site.   It has been five years since she retired from school teaching.

 

Victor is the lucky guy who has been my chauffer and help mate.  Wonderful husband, companion, flirt, and overall good guy.  We chase each other around the house slowly.  His sniper rifle research continues via the internet. Between email and Gunboards he is busy.  It has been a little over twelve years since he had his leg amputated due to a work accident and ten years since he retired.

 

Since we are both retired, we are not early risers.  We miss being parents a little bit, however the light of our lives is little Violet our granddaughter. We see her regularly and she is growing up so fast.  In this large house it is just us two and the two pets.  We could make do with downsizing.  However, neither of us is looking forward to the packing and moving sessions it would take.

We wish everyone a Happy, joyful Holiday Season.

Also:

I have enjoyed being 55 all year.

Victor turned 73 this year in November.

We celebrated 33 years of marriage in November.

This was a year of physical pain, 2017 was mental anguish.

Come on 2019!

Katherine and Victor

Trinket and Pumpkin

Rialto, CA

Family Letter Summer 2018

We have a family letter we send into my Mom’s large family.  Her Dad had ten brothers and two sisters so we have cousins galore.  Here is our summer letter.

Family Newsletter July 2018.

Hi Family:

We went crazy and began house renovations in March. We are almost done with pretty much renovating a 1958 ranch style house and upgrading everything to 2018 standards of code.  We must have gone nuts somewhere in the signing of paperwork!  We had several things done:

Water pipes replaced and upgraded to copper

All electrical upgraded with new box outside.

New roof

New windows

New paint outside

Popcorn asbestos ceilings removed

New laminate floors inside

New paint throughout house

Kitchen counters redone

Kitchen cupboards painted

Vinyl on kitchen floors and bathroom floors

One bathroom redone- new tub. new vanity, new tile

The back porch was taken out and redone

New set up for washer and dryer

New sink vanity in back porch hooked up

We had to pack the entire house and move out for ten days to get the asbestos popcorn ceilings out of the house by haz-mat teams.  We stayed in the Days Inn here in Rialto.  It is a cheap little motel and sits along the freeway  and near the train yards.  We could hear the train brakes in our room at night.

All I can say is the motel needs a little help.  It was an adventure.

The dog barked at every construction worker who came into the house.  We have discovered that if she does not like someone, then she does NOT like them.  I had had to call her off a few of the workers and lock her up.  She especially does not like the City Inspector who comes into the house to inspect.  He nicknamed her Dogzilla.  The cat went into our bedroom closet and did not come out until the workers were gone.  Both animals went to a Rover.com dogsitter for the ten days we were out of the house.  When I picked up the dog she howled at me for a half an hour.

We have been unpacking everything and finding things.  We have moved furniture and still need to set art up on the walls.  Victor is slowly putting his stuff together.

Thank God for my sisters and all of their help when we had to unpack two and a half storage units of stuff in two days into the house.  Of course we had help from our contractor company. However, Anita organized my library by author and Christy did Victor’s library by subject. It has been a project to get the house back in order with construction guys roaming in and finishing things up.  We spent money like we had money to spend on the house projects.

I ended up in the hospital for five days the last week of March.  Some where along the line I caught the flu which turned into sepsis and pneumonia and caused my blood pressure to drop.  I do not recommend passing out in front of the emergency room intake team. It tends to really upset them.  I went from a wheel chair to a gurney where they were putting all kinds of sensors on me.  They said my BP dropped in the 40s as a top number.  I had driven myself into the ER so I had to call family and let them know I was being admitted.  I was yelled at for taking myself and told not to do that again.  I was admitted into ICU and pumped full of antibiotics and drugs to bring the BP up to normal pressures. Anita had already had the flu so she came to visit me every day.  She had to wear a mask and do protocols to visit. I am now on blood pressure uppers and it is doing all right so far.  Then to top all of this up my left hip has sciatica and bursitis acting up in it.  However the combo of meds I am on now has taken away a lot of the all over body pain was experiencing for months on end.  I am feeling better and am able to do things now during the day.

Victor is doing well.  He is frustrated by his stuff being all moved and rearranged.  He is still doing research and keeps himself occupied online with his computer.

So life goes on here in Rialto, on second, one minute, one part of anhour at a time.

Have a great summer!

Katherine and Victor