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.

Just Breathe

The cartilage in my throat, trachea and voice box are all being affected.  My lungs are joining in. It feels as though my pills get caught in my throat. My GP thinks my airways are full of inflammation. It is so hard to breathe, that hardly any exertion makes me breathless. My voice is hoarse, quiet and hard to understand. Now I involuntarily cough to clear something in my throat. I call it the ugly cough. It really is more of a gag actually. When I cough it is as though I have no air and I need to clear a path. I’ve been lately coughing out blood. The doctors are still figuring this one out. I’ve been recently hospitalized and put on loads of prednisone.

The coughing and prednisone keep me awake. My throat gets so very raw from the constant commotion in there. My Rheumy has really taken a back seat on this. I'm grateful for the other doctors that are watching over my care. See Three Ring Circus-Symptoms.  Take-away:  I take my pills, one at a time, before meals, that way the food pushes them down. I finish off with a hot chocolate. I don’t lie down for at least 4 hours after I take pills, then they don’t stick somewhere down the pipe. I don’t talk constantly anymore, that’s probably a relief to my sweet husband. I have every cough syrup, inhaler, pill to stop coughing, known to man,  yet nothing works. I have an appointment with a ENT (Ears, Nose and Throat Dr.) and pulmonologist (Lung Doctor) that deal with trachea and affiliated lung issues. The prednizone in high doses is calming my gag reflex some. Another Most Important Take away: Prayer is the best, I love it when people say I will pray for you.

Chae Cox from Akron, Ohio posted this on our Relapsing PolyChondritis Facebook Support Group, the great way she has chosen to accessorize her breathing tube.  She makes her own trachea collars and dresses them up. Awesome!!

Articles:  
Thickening of the Trachea Wall
Relapsing Polychondritis is a Lung Disease
Relapsing Polychondritis Mimicking Asthma 

Pain is ever present and varies in degrees and amounts of time it is the worst, but it is always there.  I didn’t talk about the pain. I learned how to do Lamaze when I gave birth to my first son and I kid that I’m using Lamaze on the pain. Take-away: I have Cymbalta (duloxetine) for nerve pain in my spine, Celebrex for the overall pain in my joints and then I take Arthritis Tylenol for the pain through my face and nose. 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.

 "Good timber does not grow with ease. 

The stronger the wind, the stronger the trees. 

-:- Thomas S. Monson"  -:-