Dialysis Isn’t Just Treatment Times

Dialysis is not just going to treatment for a certain set of hours.

It is dealing with doctors and nurses.

It is changing your diet.

It is fluid restriction.

It is aches and pains in your body.

It is getting ready to go to dialysis treatments and getting ready to leave those treatments.

It’s staying for your entire time and not losing your mind.

Dialysis is a mindset.

Dialysis is access surgeries and problems.

.Dialysis is lonely if you do not have a community to relate to or a family who backs you.

Dialysis means lifestyle changes.

Dialysis is a set of six doctors who see you regularly, not including the dialysis center team.

Dialysis is needles, large ones.

Dialysis is having a team that works with you, hounds you, and even yells at you over things.

You can choose to live to dialyze or choose to dialyze to live.

Kidney Disease Warrior

When I began dialysis, I was in for a fight for my life. I acquired pieces of armor to help me.

Fight of my Life

I earned a helmet by thinking of and using ways to help myself.  Body armor came through my research, reading, and work I do within the dialysis community. The medical team is a sword to fight my kidney disease. Family and friends are a shield of support.  Power ups to my entire armor strengthen me.  I put this armor on to fight kidney disease every day.

Mental Challenges, Staying Positive Helmet

The helmet I wear helps with mental challenges end stage renal disease brings.  ‘I dialyze to live; I don’t live to dialyze’ is my mantra after twenty years of dialysis.  Things that make me happy have become a priority. I throw prayers to the universe. Getting out of the house with family and friends helps when the same four walls close in. Sometimes taking life one second, one minute, one hour at a time is all I can do to fight. 

Learn and Share about Kidney Disease and Dialysis

The armor that protects my body is made up of the things I do to learn and share about renal disease and dialysis. My knowledge comes from research, reading, and talking to people. I enter the RSNhope.org essay contest every year. My blog http://lifeonthelist.com is about being a permanent dialysis patient. I visit websites and Facebook groups to talk about patient experiences. I am an administrator for Ihatedialysis.com. I became a ‘subject matter expert’ this year in my dialysis center working with ESRD Network #18 to disseminate information to patients. 

My Medical Team is my sword

I use my medical team as a sword in the battle against end-stage kidney disease and dialysis.  I attend every dialysis treatment scheduled. I stay for the hours I am on the machine. I tell the center doctor about any problems concerning dialysis. We work together to solve problems. I go to my medical appointments outside the center. There are six doctors on my team. I try to see each one at least every six months. I take my medication as prescribed and pay attention to the side effects.

My family and friends as a shield

The shield I use to protect myself in battle is my family supporting me.  My sisters help whenever I call for a ride to dialysis. My family comes to sit with me when I am in the hospital. I get hospital psychosis sometimes and their visits help me to stay grounded. They bring meals to my house when I am ill. We celebrate holidays by sharing the cooking and cleanup. We take trips that get me out of the house.  They allow me to lean into their strength.

Love is a power-up for me to use.

My husband is my strengthening power, ‘a power-up’, to my armor. He is the biggest and best support in my life.  My husband chauffeurs me around to run errands.  He takes me to dialysis and arranges the nest in my chair at the center before I sit in it.  He helps me believe I am beautiful even on my ugliest days.  He puts up with my mood swings.   When I need someone, he is always there.  This man is the love of my life.

My advice is to put on the armor you use to fight kidney disease every day. Have ideas and plans that help with your disease. Communicate with other people on dialysis to share stories and get information.  Go to your dialysis and doctor appointments. Gather a support network of family and friends.

Put on your armor each day
Be a Kidney Disease Warrior

Armor on! Ready! Set! Fight to Live!  Dialyze to live, don’t live to dialyze!

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 as 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:

 http:// Ihatedialysis.com/forums https://www.facebook.com/groups/IHateDialysis

https://www.facebook.com/search/top?q=dialysis%20discussion%20uncensored

       DaVita.com- major dialysis corporation

       Fresenius.com- major dialysis corporation

I have a blog at http://lifenotonthelist.com and a Facebook group at: https://www.facebook.com/groups/495826724155937  Please visit. 

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