Corona Covid 19 Virus Thoughts

Trying to stay calm during the Corona Virus Outbreak. A dialysis clinic is a real good place to pick up a virus. The flu goes through my center regularly each year. The cough makes the rounds through the center. We get our temps taken before we walk in and wear mask the entire time we are in there. I don’t believe it will help since Corona virus is airborne. I think this virus is an easy way to control the Earth’s population. Get rid of the old and sickly and allow the next generations to inherit the Earth. My husband and I fall into the groups to be wary of this disease. He is 74 so is in the age group targeted. I am a 21 year dialysis patient so I fit the categories being affected. I am taking precautions, staying in, only getting lunch out before dialysis at a restaurant I trust, and going to the dialysis center. It’s scary and worrisome. I have never seen the way the world is reacting to this virus. Are we more aware of it because of the media frenzy or is this thing really outrageously serious? I don’t know. I am happy to be retired from teaching at this time. I am going to put my trust in a benevolent Universe and trust it to carry us through this crisis. May the Universe bless everyone of my friends and family and keep you safe.

You Got to Find Your Own Joy

You oversee whether you will be miserable or find some joy in a life full of chronic illness. You hold the wheel and determine the course.  If Joy is out of reach, stretch yourself. It’s right there in front of you.

Here are 15 Ideas to Help You Stretch for Joy

Take your meds as prescribed.  The pain will be less.

Do something fun each day. 

Tell a joke to someone.

Find the fun in things you do. Realize you are HERE to do them.

Join a support group. Try a few groups out until your find the one that is your tribe.

Find a support group in your area where they meet. Seeing real people with the same problems relieves your stress.

Admit when you need help.  Ask for it.

If someone asks, “How can I help?” Give them a job or chore to do. Shopping, going to the post office, running an errand for you is a great way for them to help. Make a list every week. Call them up when you need help.  Your friends are standing around wanting to help you.  “Can you pick up bananas for me?”

There are Art Therapy classes online.

              DeterminedtoShine on Facebook has free and inexpensive classes that offer journal art as a way to learn about yourself.

              https://www.willowing.org/product/life-book-2020/  Offers art to women to help find themselves in their lives.

https://www.facebook.com/groups/redthreadcafeclassrooom/ A tribe of women who support each other through art.

Find the art that speaks to you. 

Color in one of the new adult coloring books.  I have a Swear Word coloring book, among my design coloring books.  Get the crayons, pencils and markers out.

Read or reread a favorite book.  Buy a new book to read.

Write in a journal every day. Pour out those feelings.  Take a meditation and writing course with https://nadiacolburn.com/   She does free courses and has a class you can pay for.

Get out more.  Take a walk. Go to the mall.  

Eat out once a week.  Even the dollar menu will get you out of the house eating something new. Take a friend with you.

Get a therapist either in person or online and talk to them really truly talk to them.

I do have tried all of these things and do some of them. Take what works for you. It takes work to put joy into your life. Don’t let the Chronic Illness steal it, Take it back. Reach for it.

21st Dialysisversary!

My Going to Dialysis is now old enough to drink in the state of California.

Kortnee Greenfield courtesy Unsplash

21 years of 3 days a week dialysis.

21 years, 3 days a week Let’s see 52 weeks in a year

52*3=156 days of dialysis in a year.

156 times 21 years =3276 days of dialysis in my life.

2 needles in my arm is double 3276 and

we get 7552 size 15 to 16 needles in my arm.

I need a cake to celebrate! I have gone to every dialysis treatment I had to go to over twenty years. Every damn one of them!

Here’s to Life Not on the List! Here’s to me! 21 Again!

alexandra-gornago-_B7shfNUXEA-unsplash

I Treated Myself to a New Medical Alert ID Necklace

The first medical bracelets offered to me as a patient when I younger were ugly, so I never considered getting one; although I did know it was important to have one due to my medical conditions. One day I received an email asking me to look at an article about medical ID bracelets. Designs for women and men had changed in medical IDs. I saw many new designs that I would like to have.

Medical ID Bracelets are the first defense for patients to let paramedics and ER people know important information about their health. Sometimes a patient is unable to communicate with the health personnel and a custom-engraved ID bracelet or necklace can speak for them. Right now, there are so many options and ways to purchase medical alert jewelry.

There are the bracelet and chain that everyone has seen since the 1970s as medical ID bracelets. There are new designs out now that wearers can match with their style or clothing. Several offer pendants on necklaces for either men or women to wear. There are a lot of beautiful designs to choose from

This time, I chose this necklace from a brand called American Medical ID https://www.americanmedical-id.com their website came up first when I looked up search results. It’s a 10K gold-filled oval tag embossed medical ID necklace. I like the subtle look and think it’s really elegant. It’s not as big as the traditional medical ID tags. The medical emblem is embossed but still easily recognizable.

The new pendant necklace (front)

Now onto the engraving. My new medical ID necklace can be engraved on the back side of the pendant or tag. It can actually hold up to 5 lines of medical information. A lot of people are asking what to engrave, you can check this helpful engraving guide first.

The new pendant necklace (back) (Phone number has been removed for privacy)

I used all 5 lines for the engraving since the company offers unlimited engraving for just $7. I included these details:

1. My Name

2. Dialysis

3. No Use Left Arm

4. Ostomy

5. My In Case of Emergency Contact (This has been removed for privacy reasons in this picture)

Your engraving can be different from mine. Your doctor can also help identify the most critical information to engrave on your ID too.I agree with paramedics and ER professionals that a medical ID would be helpful in a time of need and I am unable to communicate with them. A medical ID is recommended to anyone with a medical condition. You can look at the website I provided to choose a medical ID that you’ll prefer.  

5 Things to Do to Feel Better on Dialysis

  1. Watch your fluid intake.  Keep track of the weight you gain on week days and on weekends.  Once you get a few weeks data, look at it.  What is your average gain?   Then track your fluid intake for a week or two.  Are you taking in too much?  Can you change it?  Fluid is such an important part of dialysis.  The taking off of fluid is one of the main things people complain about.

2. Eat well. Be sure your diet has all kinds of foods in it., Keep on eye on the kidney diet recommended by your dietitian.

3. Come to dialysis prepared to nest for four hours.  Make sure you are wearing comfortable clothes.  Be sure you have something to do.  Bring things that make you comfortable for those hours in the chair.

4. Sleep. Get rest and sleep as needed.  If you feel tired during the day, take a nap if you can.  Sleep those 8 hours a night recommended.  If you have insomnia, ask your doctor what you can take.  Use meditation or calming tea to soothe you to fall asleep.  Turn off the electronics a half an hour before going to bed. 

5. Attitude.  Dialysis is tough.  It is one of the hardest things to do.  It is day in and day out a grind every week.  The techs and nurses know it is.  They want to know how you are doing.  Bring your health problems to them.  Tell them what is going on, so they can help you.  If you have a good attitude towards your treatment times, you will be much happier. Remember- You can hate dialysis all you want.

A few places to go for help:

       I hatedialysis.com forums and Facebook page

       Dialysis Discussion Uncensored Facebook page

       DaVita.com- major dialysis corporation

       Fresenius.com- major dialysis corporation

I have a Facebook group for lifenotonthelist.com.  It is for long term dialysis patients.  Please visit.  It is new.

Remember: Dialyze to Live, don’t Live to Dialyze!

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!

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