Be Kind To Yourself

It Was A Good Day Today

I had a good day today. How was yours? Yes, I have good days/hours. (disclaimer... this is NOT a picture of me, just how I feel on a good day)

On my good days I tend to try to do everything I've thought about while I was down for a bit. It's easy to overdo it. But I'm so excited!!

"Today is life -- 

the only life you are sure of. 

Make the most of today. 

Get interested in something. 

Shake yourself awake. 

Develop a hobby. 

Let the winds of enthusiasm sweep through you. 

Live today with gusto." 

-:- Dale Carnegie -:-

What can you do to stay positive? First off not doing what you've always done is frustrating, there is no getting around that. You have worked to get this far in life and now everything is upside down. So go easy on yourself. Below are some ideas to help with staying positive. Decide how to spend your spoons. See How To Spend My Spoons

“All we have to decide is what to do with the time that is given us.”

-:- J. R. R. Tolkein -:- 

• Remember: You're Not Failing! Remember that just doing the basics is fantastic. Are you a list maker? Did your lists use to have big projects on them? Forget that, write down the little things so you can check them all off. Made bed, brushed teeth, put the clothes from the washer into dryer, filled the medicine dividers, watered plants. Go ahead, make the list and check them off as you get them done, such satisfaction for the smallest of small tasks. 

• Give Yourself Time to Grieve: Getting a disease like this is really the pits! It stinks! Take time to grieve the life and dreams you are changing. Have a good cry. When I’m upset I go pound it out on the piano. Find your outlet and let the grief come out (make sure anything living isn’t hurt in the process). Now the important part is you need to come back. See RP Will Not Define Me!
  

“It’s also important not to become angry, 

no matter how difficult life may seem because 

you can lose all hope if you can’t laugh at 

yourself and life in general.” 

-:- Stephen Hawking -:-

• Service  It is empowering to have things to look forward to. We will always feel better when we step out of ourselves and serve another. Some days, just shake it off and even though we may only have a little bit of energy we can find a way to serve. Here are a bunch of suggestions for small acts of service that are guaranteed to bring you joy.

Ideas adapted from Natural Beach Living

I am a little pencil in God's hands. 

He does the thinking. He does the writing. 

He does everything and sometimes it is really hard 

because it is a broken pencil and He has to sharpen it a little more" 

-:- Mother Teresa -:- 

We had a discussion on our RP Facebook Page about what body part we can donate. We spent time going over the facts that no one would want our blood and discussed what on us is not affected  by the disease that could actually be useful. We decided our skin. So we aren't taking the donor option off of our driver's licenses. Then it was mentioned how wonderful it is to be part of a group that no matter how sick we are, we are looking for a way to help others, even after we are gone. I am so grateful for this incredible group of fellow RP friends, we aren't large in number but we are huge in spirit.

• Break Down To-do's Into Mini Tasks If you've just had a flare, work yourself into things that need to be done gradually. Break them up into workable sections. Work on the task then take a break. If you are sitting, get up and walk around. Stretch. Don't over do it. There is such pleasure in the completion of small tasks. I love to quilt but I've found the longer I sit at the sewing machine the more the costochondritis in my ribs hurts. If my ribs start hurting, then I find a comfortable chair and watch a tutorial from Missouri Star Quilt and get inspired. I need to add more time on to the things I want to complete. My family loves my fresh peach pies. They are best when the peaches are picked from our tree that day then put into a home baked shell. I used to put out 9 pies on the day I was making Thanksgiving Dinner, now for the 3 peach pies, it takes me two days. One day I make the shells and bake them, the next day I make the filling and my husband picks the peaches. A big change for me but I'm not going to stop making them because it is harder, I'm going to just take longer.

• Do Little Things for Yourself It's easy to focus on all the things you're missing. Let's focus on the good. Do little things for yourself: Have you had a manicure, pedicure, a rest under a shade tree, read a book, binge watched your favorite series, slept in fresh clean sheets? My voice doesn't last long but I ration it out so I can get one of my great talks on the phone with 4 and 7 year old grandchicklets. 

The phone rang the other morning while we were getting ready for church and a little voice said “Hi Nana, how are you feeling?” He proceeded to tell me about an exciting football game he went to with Papa and his uncle Marc, (they were the red team)  many more stories. Then as I sent him a kiss through the phone, I asked him if he got it, he said yes. I said “did it go in your ear?” He said, “yes, then it went through my blood and through my whole body and I feel good” Oh, how I love conversations with a just turned 4 year old! We had that whole conversation by all by ourselves. Being a Nana is the BEST invention ever!

Treat Yourself
Treat yourself to something fun once a week or as often as you can. Nature is incredible at rejuvenating your spirit, go play with some puppies, get your hair cut, and then there is always ice cream. I rarely have an appetite but I never say no to ice cream.  Writing my history and doing family history is a passion of mine, I can do it with my laptop in my recliner. It is very relaxing and fulfilling at the same time.

People need to be touched. A hug, a squeeze, lightly touching an elbow, we respond so well to thoughtful touch. The Maori greet with the hongi, or the "sharing of breath," is a sacred and revered act that is typically displayed in a very distinctive manner: A physical exchange where two people press their noses against one another.

  

"No other form of communication is as universally 

understood as touch. The compassionate touch of a hand 

or a reassuring hug can take away our fears, 

soothe our anxieties, and fill the emptiness of being lonely."

 -:- Randi G Fine -:-

Those are just a few, very calm things that I can do now compared to the go a mile a minute gal I once was. Remember you are human, not super human, and that's okay.

Live your life by design or by default. You can choose. 
I choose design.
-:-

You Are Being Watched Over

There was once a group of women studying the book of Malachi in the Old Testament. As they were studying chapter three, they came across verse three, which says: “He will sit as a refiner and purifier of silver.” This verse puzzled the women, and they wondered what this statement meant about the character and nature of God. One of the women offered to find out about the process of refining silver and get back to the group at their next Bible study.

That week this woman called up a silversmith and made an appointment to watch him at work. She didn’t mention anything about the reason for her interest beyond her curiosity about the process of refining silver. As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all the impurities.

The woman thought about God holding us in such a hot spot – then she thought again about the verse, that he sits as a refiner and purifier of silver. She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined.The man answered “Yes”, and explained that he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left even a moment too long in the flames, it would be damaged.

The woman was silent for a moment. Then she asked the silversmith, “How do you know when the silver is fully refined?” He smiled at her and answered, “Oh, that’s easy. When I see my image in it.”

If today you are feeling the heat of this world’s fire, just remember that God the Father and His Son Jesus Christ are refining you. Let the light of Christ shine from you.

Remember to look up at the stars 

and not down at your feet. 

Try to make sense of what you see and 

wonder about what makes the universe exist. 

Be curious. And however difficult life may seem, 

there is always something you can do and succeed at.
It matters that you don’t just give up.” 

-:- Stephen Hawking -:-

Stressed Spelled Backwards Is Desserts

Ear Nose & Throat doctor #1

After examining me, he ordered a throat swallow test. I was having troubles with swallowing my pills, they were getting stuck in my throat. I would drink a fizzy drink to help them dissolve, I thought if this Diet Coke can clean toilets, then it can melt pills that are stuck in my throat. Nope didn't work. Then how about melting the pills in my throat, hot chocolate, I would melt it with warm liquid. Still things stuck. I was told at my swallow test to take my pills one at a time, then follow them down with applesauce or Greek yogurt… helps. My throat has narrowed some and there is a small hiccup in my final swallow… whatever that means. He wanted me to see a specialist at our University Medical Center that works with Wegener’s but he couldn’t remember his name.

The Rheumotologist told me that I would now have a new normal. Inflammation was my enemy. These types of autoimmune diseases feed on inflammation. How do you stay away from stress? One way is to stay away from contention. Or the catch phrase now is toxic people. 

"Jesus did not say, “You are not allowed
to feel true pain or real sorrow from the
shattering experiences you have
had at the hand of another.”
Nor did He say, 'In order to forgive fully,
you have to reenter a toxic relationship
or return to an abusive, destructive
circumstance.'"
-:- Jeffery Holland -:-

I always love what Hank Smith has to say. Only once I have crossed paths with a few real toxic, gossipy people. The only way to win is to not play their games. Boundaries are healthy. My disease is fed by inflammation. As I'm writing this blog about my RP journey, I look back I can see how the disease spiked when I had to deal with them. If someone is toxic, gracefully move on.

"Boundaries are healthy. Enabling any sort of abuse is not Christ-like. The Savior had firm boundaries throughout His life. You can forgive someone and move on without them in your life. You can say, “I forgive you. I hope you are happy. I wish you the best. Goodbye.” To think you have to return to a potentially cruel and painful relationship in order to forgive is simply not true. Some relationships need to be severed in order for everyone involved to move forward and heal. The trauma of betrayal can be too overwhelming to be able to be in close proximity to the betrayer. This doesn’t mean you haven’t forgiven, it means you are trying to keep yourself emotionally, physically, and spiritually healthy for those you love." -:- Hank F. Smith -:-

Now then not all stress is bad stress, my service at Festival of Trees was stressful but I loved it. I taught Gospel Doctrine in Sunday School and it is stressful to teach adults but it was enthralling. These things I had to let go so I could mellow out and get my inflammation down. 

My favorite remedy for stress is this saying

Stressed Spelled Backwards Is Desserts

Ice Cream is my remedy of choice!

Ear Nose & Throat doctor #2

A referral was sent and I was off to the University Medical Center. They sent me to another ENT by mistake but after the appointment with me I had a hearing test and this doctor knew the right Rheumatologist I needed to see that specialized in Wegener’s and other Vasculitis diseases. See Three Ring Circus-Symptoms.

 “He rarely moves the mountains in front of us..... but He always helps us climb them.”

-:- Sheri Dew -:-

The Island Of The Long White Cloud

We stopped by Hobbiton in Matamata, New Zealand on our round about way home.

Even though my body seemed to be wacky, my husband and I went on our mission to New Zealand which was indescribably fantastic and that is a whole other incredible story. Back to RP, my hip, ribs, pelvic bone and sternum really hurt at different times. The pain in my side was so strong that we went to several doctors in New Zealand to address what was wrong with my hip or back. The medical care there wasn’t what we had hoped for. Symptoms would come and go. I tried not to dwell on it and focus on our mission.


I would break out in sweats periodically, no matter what activity I was doing, then I would have the shivers like I just broke a fever. My eyes were red and I noticed in our pictures that my eyes were always squinty and I looked like I was in pain. That is totally not me. Looking back at those pictures I can tell that my face hurt that day. Several of my days were spent in bed in pain and total exhaustion. The problem was that my body had just stopped keeping up with my ambition and drive. No matter how much I willed myself that I was using mind over matter, my matter would not mind. We had a successful mission and returned home to about three semi-healthy weeks.

"No half-heartedness and no worldly fear must
turn us aside from following the light
unflinchingly.” 

-:- J. R. R. Tolkien -:-