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 -:-

What Holds Me Up Is Breaking Down

I want to be strong and hold my head up like a pansy.

A pansy is the most resilient little flower. The dainty little pansy can brave the winter to be the first to break through the spring snows to show it’s perfect little purple, white and beautiful face.
 

You can find pansies growing in some of the most uninviting, desolate places. They’ve even risen up in the crack of a sidewalk where they may be stepped on only to spring back up. They might be small and unassuming but they are the strongest, brave little spring flower. 

A pansy is not high maintenance, it is resilient, stalwart, and forgiving. It flourishes either in the blare of the sun or hidden, tucked away in the shade. A pansy has no need to be the star flower of the garden. I think the saying “Don’t be a pansy” is all wrong. I want to be like a pansy, making the best out of a bad situation, while holding my head high and blossoming in the toughest of circumstances. Grateful am I for the example of these lovely little happy flowers.

Everything that holds me upright is breaking down.  

There is cartilage in the sternum, ribs, and spine. I take Celebrex daily for the pain in my ribs, joints, face, well pretty much my whole body. For the nerve pain from pinched nerves in my neck I take Cymbalta daily. See Medicines.

My ribs and sternum have Costochondritis, they are all inflamed and tender. Some mistake this for heart pain, it's good to find out the difference. See Three Ring Circus-Symptoms. Take-away: I’ve become a collector of caftans. They are loose fitting, nothing tight around my ribcage, and I float through the house and into the closest room whenever we get an unexpected visitor. Finding a caftan that doesn't look like a tent is a bit challenging but I've found some at Soft Surroundings.

Cervical spinal stenosis is a condition I have that gives me a lot of pain in my neck. This in conjunction with all of the L vertebrates I have bulging or herniated discs, I really have a pain in the back. There is also cartilage in the spine and back rib connections. Go figure. Take-away: I get an epidural shot for both my C and L regions. It is a wonderful invention.

My vision is constantly changing, my glasses prescription have been changed several times and still things get blurry. I keep up on getting my eye pressure checked. My eyes are growing cataracts
See Three Ring Circus-Symptoms. Take-away: I have always looked at the world through rose colored glasses, now everything is blurry, the nightly news looks better that way.

Numbness, tingling and a feeling of burning started in my left hand. I went to a neurologist at the U of U and something is pinched in my elbow. Take-away: a brace around my elbow to keep me from bending it…. Not really a take-away it’s still feeling like my fingers are asleep.

Sweating until this disease has never been an issue for me. But now, sometimes just with the exertion of a conversation I’ll start to sweat. I sweat and make my hair all stringy while I sit quietly on the couch waiting for my husband so we can leave for church. Just getting dressed gets me sweaty. Take-away: My hair pulled up, and a flowing caftan is a great way to cool off and I feel that I’ve been at the beach, rather than sweating like a golden retriever. Sometimes a ride in a car with the wind in my face sounds like a wonderful remedy.

"I am determined to give every single day
a chance to be the best day of my life! "
-:- Jamie Twitchell Ellison -:-

Going On An Adventure

My husband asked me as we arrived at Hobbiton in New Zealand. "Where are you going" and I called out "On an adventure!!" I've always loved a good mystery. Now I had a real life mystery to solve. The name of this adventure is "What autoimmune disease is it?

Gandalf: I am looking for someone to share in an adventure that I am arranging, and it’s very difficult to find anyone.
Bilbo: I should think so—in these parts! We are plain quiet folk and have no use for adventures….
Gandalf: You’ll have a tale or two to tell when you come back.
Bilbo: You can promise that I’ll come back?
Gandalf: No. And if you do, you will not be the same.
“It’s the job that’s never started that takes the longest to finish.”
-:- J.R.R. Tolkien -:-

Now to find out what was causing problems with my eyes. My eyes were my priority. The ophthalmologist said if I didn't find the underlying autoimmune disease that had attacked my eyes, it would happen again. My general practitioner is a very capable, thorough, thoughtful doctor. She ran extensive blood tests on me and couldn’t find the cause of several infections and inflammation that I had or what would cause the uveitis. She tried repeatedly to get me into a rheumatologist but to no avail. They wouldn’t take me with only the problem that had affected my eyes. So it was up to my awesome GP, my husband and myself to find out what was brewing inside of me. The prize is to save my eyesight. What do I check out first. See
Three Ring Circus-Symptoms.

“Any task in life is easier if we approach it with the one at a time attitude. ... To cite a whimsical saying; 'If you chase two rabbits, both of them will escape.' No one is adequate to do everything all at once. We have to select what is important, what is possible, and begin where we are, with what we have." 

-:- Richard L. Evans -:-

 

Time To Get Things Sorted

A series of things happened. The pain in my face continued and I took anything I could to get the pain to subside. My ears would turn red and swell. I looked like Rudolph the red nosed reindeer when my nose got red on occasion. After a little while of taking Excedrin Migraine or Ibuprofen 800 my stomach was in pain too. It would hurt if I ate and if I didn’t. I had chest pain, but I knew it wasn't my heart. My ribs hurt as if I was in a corset. The tinnitus was getting louder and my husband mentioned how loud I had the volume on things. I unconsciously did this to drown out the continual buzzing. None of this made sense to me, but I wasn’t going to let it keep me down.

 
“Keep your face to the sunshine, and you can’t see the shadows. That’s what the sunflowers do.”
-:- Helen Keller -:-

Early one day after my husband left to go golfing, I showered and while drying my hair I realized everything was cloudy in the room. Thinking I had shampoo in my eyes, I rinsed them out and still everything looked like a cloud was in my house. Looking in the mirror my eyes were extremely bloodshot, my pupils were pin dots and there was a terrible pain behind my eyes. It felt like they were going to pop out of my head. I took some ibuprofen, put a cold towel over my eyes and tried to get some rest. 

When my husband came home, we went to the optometrist. He started to check my eyes and immediately sent me to a specialist, he said I wasn’t going to lose my eyesight on his watch. In fact, he told us to get in the car and start driving to the eye clinic and he would call us with the name of which doctor to see. We met with two doctors there and I found that my pressure was 47 in one eye and 44 in the other. Your normal pressure should be 13. I had uveitis.  My ophthalmologist said that is was caused by an autoimmune disease and we needed to find out which one or this would happen again. My eyes had covered over with some type of inflammation,  that is what I was looking through. He treated me with cortisone drops and watched me closely for months. We were able to get the pressure down without having to make a tiny drainage hole in my eyes to relieve it. We now needed to find out what autoimmune disease was attacking me so it wouldn't do this to my eyes again.

-:-

Sunflowers turn according to the position of the sun. In other words, they “chase the light.” Have you ever wondered what happens on cloudy and rainy days when the sun is completely covered by clouds? They turn towards each other to share their energy.

Nature’s perfection is amazing. Now let’s apply this reflection to our lives. Many people may become low-spirited, and the most vulnerable ones, sometimes, become depressed. How about following the example of the beautiful sunflowers "Supporting and empowering each other". Nature has so much to teach us.

Home In Time To Play

Three weeks after we returned home from New Zealand my mystery illness started to hit hard. While I was still in New Zealand, I agreed to sing in a play called "Savior of the World". It was done locally and would be put on in time for the Easter season. It was going to be easy to catch up, I didn't have a speaking part, just singing in the choir as an angel. I looked forward to this fun opportunity. However, I got the flu and it wouldn't clear up. This lasted 3 months. Then my voice went and I couldn't sing without coughing. See Three Ring Circus-Symptoms.

The tinnitus was so loud in my head that I couldn't hear pitches. My eyes were getting very blurry.  Reading the music was a challenge. I eventually memorized my parts. There were times during practices that my energy level went down so far that I was happy to hold up a wall. I was grateful that I stood behind a rail so I was able to hold myself steady as we performed. My balance was going. It has been so sad to lose my ability to hear pitches. That hasn't come back. I absolutely love to sing and it is one of the things I miss most. However, I was blessed to be able to sing throughout all of the performances, because I was rejoicing in the Love I have for Jesus Christ. It truly was a blessing I didn't cough on stage.

"He who sings prays twice”
-:- St. Augustine -:-

 

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 -:-