I was interviewed by Renee Fisher on her Facebook site and Zoom about writing with a Chronic Illness on Thursday, October 24, 2019. It was great interview and we reached many people.
From Renee FIsher and Co. Renee said: I wanted to thank Katherine Soto once again for talking about Writing with Chronic Illness yesterday with us! My favorite quote from the call was “I’m going to do something worthwhile.” Like Katherine said, “Every day we can make the choice to get out of bed and write one word. One sentence. One page. One…”Today, if all you have the energy or strength to do is get out of bed—you’re not alone! May this be a community where y’all feel welcome no matter what you’re struggling with.Leave a comment and let us know how we can be praying for one another!— with Katherine Soto.
From me: I wanted to say thank you to everyone who attended and watched the replay. Thanks Renee for an informative and interesting interview. You can get a hold of me through Facebook. Other links I mentioned were ihatedialysis.com – facebook and forums, nadiacolburm.com for meditative writing. Remember you are the work in progress not your chronic illness.
When you have a chronic illness it is difficult sometimes to be happy. I think we tend to sink into the negative aspects of our illness and forget that we can be creatures of happiness in spite of a chronic illness.
Marci Shimoff author of Happy for No Reason and Love
for No Reason spoke in the webinar Extraordinary Life after 40 Summit
on happiness. She said she was always unhappy
even when she was on tour for her book on happiness. She learned that everyone has a happiness set
point: 10% circumstances, 40 % Habits, 50 % genes. You can change 50 % of it through what you do
in circumstances and your habits. A
change in habits can also influence your DNA.
Changing your habits help your bodies response to
negativity. Most people respond to
negativity. It’s what we remember most
about our day. Changing this through a
simple action can help.
Write down 5 happy things from your day.
Velcro the positive into your day, Teflon the negative.
Three steps for helping reset your happiness point
Look for the positive in your day.
Savor the positive for at least 20 seconds.
When your have a negative thought, make sure to have three positive thoughts, too
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
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.
I used all 5 lines for the engraving since the company offers unlimited engraving for just $7. I included these details:
1. My Name
3. No Use Left Arm
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.
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:
hatedialysis.com forums and Facebook page
Discussion Uncensored Facebook page
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.
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.
I went to my dialysis treatments all three days.
I stayed my entire 6 hour treatment time.
I cooked three good meals this week.
I gave up eating French Fries during lunch.
I have added more green foods into my diet.
I made a list of all the red foods I have been eating.
I went to bed a little earlier each night.
I did laundry this morning. (Remind me to get clothes out of the dryer.)
I have written on my second novel this week.
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!
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.
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.
Put pain relieving cream on the sore spots.
According to how I feel after that, take pain meds.
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.