How Can I Be So Happy?

I often get asked how I can be so happy through all of this. It is simple, I am grateful!

"I love to laugh
Loud and long and clear
I love to laugh

It's getting worse every year
The more I laugh, 

The more I fill with glee
And the more the glee
The more I'm a merrier me,
The more I'm a merrier me"

I Love to Laugh from Mary Poppins

My ring tone on my phone is "I'm So Happy". We need to live each day of each month of each year with a grateful heart. When we cease to be grateful, we cease to grow, we cease to be happy.  Men and women were made to have joy. 

“If you want to find happiness, find gratitude.” 

Steve Maraboli

• I'm grateful my mystery disease has been diagnosed.
• I am grateful for every good day, hour or minute I have and I do have them. 
• I'm grateful for all the littles and big grandchicklets, my husband, children, family and friends. 
• I'm grateful for modern medicine that keeps me going. 
• I'm grateful for hugs, music, sunny, rainy and any day I wake up.
• I'm grateful for Missouri Star Quilt and tutorials teach me how to make quilts. 
• Family History is a passion of mine, finding those elusive ancestors! I’m so grateful for all of the tools we have at our fingertips to find them.
• I'm grateful for my Savior Jesus Christ and the comfort He brings me.

I am grateful for grateful people. Grateful people don’t expect that life owes them anything that they haven’t rightfully worked for. They have no preconditions to be happy, they know that you can’t have a rainbow, without a storm. They have hope, think straight, and are flexible. They make no excuses. You can never be upset with someone who is truly grateful. I would do anything for a truly grateful person. I just can’t resist them! They give but expect nothing in return. There are no conditions on their service. A grateful person realizes that all that they are, have and can be comes from God. He is the one that should get the utmost gratitude. We must all learn to be more grateful, practice it, and give credit to Him from whom all blessings come.

A grateful heart is a beginning of greatness. 

It is an expression of humility. 

It is a foundation for the development of such virtues 

as prayer, faith, courage, contentment, 

happiness, love, and well-being.

-:- James E. Faust -:-

I am always ready to joke. "Every time you laugh you just extended
your life by a day." I have no idea where that thought came from, I may have made it up but I totally believe it. I send a joke to my sweet little mom as often as possible so we can keep her around longer. Laughing with my wee granddaughter is so fun. The more I laugh the more she does. The sound of my cracked laugh doesn't bother her. Even though my throat is severely constricted, I absolutely love to laugh. It has morphed however. I laugh until I honk, then cough, gasp, honk again it is a crazy circle. I love it when you are laughing harder at the people laughing than you did at the original joke. 

"A sense of humor is needed armor. 

Joy in one’s heart and some laughter 

on one’s lips is a sign that the person 

down deep has a pretty good grasp of life."

-:- Hugh Sidey -:-

I love this song. I have so many blessings that counting them is a joy. Like the song says; "So amid the conflict, whether great or small, Do not be discouraged; God is over all. Count your many blessings; angels will attend, Help and comfort give you to your journey’s end."

Road Tripping in Zion National Park

“Humor is the great thing, the saving thing after all.
The minute it crops up, all our hardnesses yield,
all our irritations, and resentments flit away,
and a sunny spirit takes their place.”
-:- Mark Twain -:-

This is how my husband and I take selfies at Zion National Park. We take our photos very seriously.

My plan for the future is to go to the National Institute of Health (NIH) Relapsing Polychondritis Study. The NIH has an incredible doctor, Dr. Marcella Ferrara that has Relapsing Polychondritis herself and she is heading up a study on the disease. They keep us for a week and determine what my doctors need to do for me. They do DNA test to see if we share any DNA markers. I sure appreciate all the work she has done on this rare disease. I have sent in my paper work to her team and I know that they take people in order of the severeness of their disease, and availability. It could be a while for me. This study is supported by Race for RP.

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 -:-

Race Cars for RP!

Race for RP is Racing for Us!!

The Race for RP supports research, awareness programs, and care for those who are affected by relapsing polychondritis (“RP”) and related diseases. RP is a rare, debilitating, and in some cases fatal disease that attacks the patient’s cartilage, including in the ears, nose, joints, and upper and lower airways.  Race for RP
 

Our Relapsing Polychondritis Foundation Board Director, Carol Giordano, has a great explanation about the Race for RP group, our champions. 

"Race for RP, a separate non-profit entity, is the Foundation’s “best friend”. They are aware of our (RP Patients) needs and desires to fulfill our mission. Part of the long list of what they do for us includes being our largest donor. Their funding has been enabling us to attend conferences, educate doctors, improve our media presence and more. They’ve introduced us to the exciting world of auto racing, which is so fun to watch. Their main drivers are Kyle Marcelli, their Brand Ambassador, Jeff Westphal and Neil Langberg. But, it’s more than that. Their collaboration with us is fantastic for awareness and recognition, especially when you see the decals on cars, fire suits, hats and apparel. Not to mention hearing and seeing all of them in interviews on video and in print.

Our Foundation is proud to promote Race for RP and, in turn, very thankful that they promote and support us. Whenever you see, or read about, the great drivers and see the awesome cars, think 'there’s our best friend, and they are doing this for me and my family!'"

Educational Video from Race for Relapsing Polychondritis

"You cannot do a kindness too soon, 

for you never know 

how soon it will be too late." 

-:- Ralph Waldo Emerson-:-

Educating Your Doctor

What do you do when your doctor has never heard of Relapsing Polychondritis?    

How do you educate a doctor in the 5 minutes you have with them and leave them enough time to come up with a treatment plan? Just imagine you have had all of these squirrely symptoms and you feel absolutely horrible. The people you love are telling you all of the things that work for them, but remember you are dealing with a whole new deadly monster that most have never dealt with. Trying home remedies are fine but with RP you are seriously in danger of losing your life if you don't get some treatment. You can't walk because your knees are too painful, your head constantly hurts, you are exhausted, your eyes are blood shot and blurry, your throat is sore and voice scratchy. You don't have any type of upper respiratory ailment. Then someone notices you have bright red ears and/or a bright red nose? Could you have Relapsing Polychondritis? See Three Ring Circus-Symptoms.

What do you do?

Go to the doctor's appointment prepared. Take a list of all of your symptoms, a time line if you can, pictures of when your body was flaring. Be prepared to leave the pictures with your doctor for their files. Then I always take a flyer with me. I keep them in my car in case I arrive at an appointment and realize I forgot to bring one. Don't be hard on your doctor if they have no clue about the disease. RP is so very extremely rare, that in all likely hood they never heard mention of it. And, be patient with their reactions. Doctors are so very busy and to throw something brand new at them and expect them to research it is a stretch. They may take the flyer, thank you and ask about the disease, they may take the flyer and set it down somewhere or give it to a nurse to go in your file.

Whatever they do BE YOUR OWN ADVOCATE!  

Don't let your questions get passed over. Did you know that most medical services have online profiles just for you, where you can read your test scores, doctors notes and imaging reports. Check them out and ask your doctor about them. I have a wonderful GP that has researched RP on her own time. We need more like her. Help your doctor think out of the of the box, or beyond the Z.

“So, on beyond Z!
It’s high time you were shown.
That you really don’t know.
All there is to be known.”
-:- Dr. Seuss -:-

These three flyers are good to take. They come from the Relapsing Polychondritis Foundation. The first one is just simple and the other two go into more detail. I send a pdf of them off to our little town's local printer and they make copies for me (less cost than my ink). I get the 3rd one printed on a slick thick paper and then I trifold it and bring it along to my doctor's appointments and introduce them to something they've probably never heard of before. It looks as official as if I obtained it straight from the foundation. Download these as a jpg or png. They are for you to use.

"Carry out a random act of kindness, with no 
expectation of reward, 
safe in the knowledge that one day, 
someone might do the same for you." 

-:- Princess Diana -:-

Medicines

*Medicines

Prednisone: The mainstay of treatment is systemic prednisone and is given large doses when things are acute then is tapered off. I have to be on this right now. I am on a huge dose as we try to keep my windpipe from imploding. This will be tapered off as the inflammation in my throat subsides. I hope that my chemotherapeutic drug will keep the disease at bay so I can stay off of prednizone. For me, prednisone has been only kept for an emergency.

Methotrexate, Folic Acid, Mucinex, Biotin 

Methotrexate is a chemotherapeutic medication. I researched Methotrexate and difference between the pills and the shots. The consensus seemed that those on the shots had lessened side effects. I have been giving myself the shots once a week for the past 2 years. My body’s reaction to it at first was a lot of nausea, headaches and even more exhaustion. How could exhaustion be even greater that it had been, but it managed to be.

The Methotrexate Facebook page offered up some very helpful suggestions for the side effects. Hair loss, nausea and exhaustion.

To Help with Nausea:

• Take 4 folic acid pills every morning
• Take a Mucinex DM the night of my shot and 12 hours later 

For Headache: 

The suggestion was for coffee the morning after the shot but since that’s not in my wheelhouse, I take one Excedrin migraine pill with a swallow of diet coke. I figured that would give me the caffeine others use. After a while my body got used to this routine and I functioned quite well with this odd combination of pills. My body has now acclimated and I no longer use the Excedrin. When Excedrin was used I don't take Celebrex the same day.

Dosage Increase: 

The only time it really sends me down the rabbit hole is when the dosage gets upped, but the reactions eventually even out. 

Hair Loss:   

One biotin pill daily and the folic acid has helped me keep my hair. I get my biotin at Costco. 

General RP Pain:
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 (duloxetine) daily. I take Arthritis Tylenol in addition for the pain through my face and nose if it is still painful, it doesn't work the best but it's better than nothing. Maxtal is for my migraines. Epidural Injections in my spine, both C and L regions. I stay away from pain killers with aspirin in them as it totally eats my stomach.

Some people with RP are on NSAIDS. I can't be on them anymore but if you are using them here is a tip from my doctor at the spine clinic. When taking NSAIDS also take Famotidine (it is a prescription). I took 20 mg with the NSAID, it buffers your stomach.
NSAIDs include: Excedrin Migraine, aspirin salsalate (Amigesic), diflunisal (Dolobid), ibuprofen (Motrin), ketoprofen (Orudis), nabumetone (Relafen), piroxicam (Feldene), naproxen (Aleve, Naprosyn,) diclofenac (Voltaren), indomethacin (Indocin), sulindac (Clinoril), tolmetin (Tolectin), etodolac (Lodine). In short they contain asprin.  

Inflammation is what feeds Relapsing Polychondritis best. Here are a few natural things that I take to decrease the inflammation in my body.

Supplements: 

Turmeric

Sour Cherry Juice
Fish Oil

Vitamin D

Cranberry

Probiotics

Calcium/Magnesium/Zinc 

Laughing is the best medicine 

but if you are laughing for no reason
you need medicine. 

-:-

*Remember these are just my suggestions from my own experience and I have no medical credentials for this, just tried and true. 

How To Spend My Spoons

Exhaustion is my constant companion. I wake, stretch, get dressed and go lie back down. I’m always pushing to do the smallest things. I can’t even bear to remember how I was, just how I can be now. 

 

I explain this exhaustion as the feeling you get after running a marathon, crossing the line and falling into a joyous limp body heap. However, this exhaustion comes after no exertion and there is no joy in it at all. See I've Become A Passenger.

When a friend of mine with rheumatoid arthritis found out I have an autoimmune disease she told me about the 12 spoon theory which is great. It talks about having 12 spoons of energy every day to start with and how different things takes spoons away the energy in different amounts. The problem is sometimes, I have no spoons to start out with.  

 RP The Ride of My Life is a documentary about Relapsing Polychondritis, a rare autoimmune disease. Take-away: ““When you cannot do what you have always done, then you only do what matters most.” Robert D Hales

"I hate to cancel. I know we made plans
to get together tonight,
but that was 2 hours ago.
I was younger then, full of hope.
But now I'm tired." 

-:-

The Spoon Theory by Christine Miserandino

• A person has roughly the same amount of energy each day.

• Each unit of energy is represented by a spoon.

• Healthy people have more spoons (energy) than those with an illness that causes chronic fatigue.

• Some activities cost more spoons than others.

• A person with a fatiguing chronic illness needs to make decisions about which activities to spend their limited number of spoons (energy) on -- the illness stops them doing many things they want to do.

• The chronic illness means that if the person does too much in the morning, they will not have enough spoons left for the afternoon or evening.

• The chronic illness may mean that a person can do something in the morning OR on the afternoon - but NOT both. They may seem inconsistent because their energy levels and number of spoons fluctuate.

• A healthy person does not need to plan how to spend their spoons, because they do not have an illness that limits them.

All of these things are from Relapsing Polychondritis. In all of this is the pain. The only thing on me that it hasn’t been attacked yet are my heart valves. Hopefully RP didn’t read that memo and leaves my heart alone.