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 -:-

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"  -:-

 

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 -:-

What I've Learned So Far

 

Let’s peddle ahead 8 months. This disease is a mean one. It destroys all the cartilage in the body along with the collegian. It is also partial to eyes. Relapsing Polychondritis or RP evilly says,  “Let’s make her blind while we cut her off at the knees”. There is cartilage EVERYWHERE in your body.

As we go through my past, we can see where RP has hit. In 2010, I had my left foot fused because the cartilage was gone and my ankle was bone on bone. Now I have had both knees affected, both hips with a tear in the cartilage in my right hip.  

Take-away: This disease will not keep me from playing on the floor with grandchicklets. I’ve learned to get up off the floor, roll over onto all fours and push with my arms on a piece of furniture until I can stand up. This works for tubs too!!! (skip the furniture and use the side of the tub)

I have had shots in both knees, it has helped me for about 4 months, but I need to have them checked out again. This was by an orthopedic surgeon.

I have Trigeminal neuralgia which was diagnosed in 2011. It seems there is an inordinate amount of people with that and RP at the same time. Could this just be a coincidence, or is it related to RP? The migraines from Trigeminal neuralgia are called the “suicide headache” because it is extremely hard to get away from the pain.  I have found them to be diminished since I’ve been on Methotrexate. Several have this condition in our Facebook RP group. Take-away:  When I do get these migraines,  Maxalt helps better than anything else. See Medicines.

It has attacked both ears. When I am in a flare my ears go red and hot. It only goes red where there is cartilage. The lobe at the bottom of the ear doesn't go red because it isn't made of cartilage. My right ear is the worst and is starting to cauliflower over.

Take-away:  my glasses slide off easier as these ears break down, also the medical masks slide off so I double the loop around my ear to help stable them.

The tinnitus is still really loud. If everything in the room is ultra-quiet, the tinnitus is all the more extreme. See Three Ring Circus-Symptoms. Take-away: I seem to sleep better when there is noise in the room, then my brain focuses on that and the noise in my ears calms down. Might I suggest binge-watching Diagnosis Murder? Works for me. I’ve slept through many episodes, I need to binge watch again.

My nose keeps turning red and really aches. It could lose it's cartilage and it could saddle.  Take-away:  I’ve been looking at movie star pictures to see which one I would like when my nose decides to saddle. It takes forever to heal from a tiny cut, how would plastic surgery be? Any suggestions for a cute nose?

"When life gives you lemons make lemon chicken

and lemon pound cake.  Shake things up a bit."

-:-