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 is Being Spotlighted Today - Symptoms

  

I call it a three ring circus (maybe even more rings). This means there is something going on in each ring such as knee pain, nose pain, tinnitus with one thing spotlighted. On one day the nose is hurting the most and the others are simmering, later that day the tinnitus is extremely loud, with the knees have a catch in them but not spotlighted. It runs through the body that way if you are lucky with most the things on the simmer and only one spotlighted. Hopefully not all rings are spotlighted at the same time, we call that a flare!

Definition of Symptoms by the National Institute of Health

Relapsingpolychondritis (RP) is characterized by recurrent inflammation of cartilage (the tough but flexible tissue that covers the ends of bones at a joint) and other tissues throughout the body. The features of the condition and the severity of symptoms vary significantly from person to person, but may include:

• Ear: The ears are the most commonly affected body part. Symptoms include a sudden onset of pain, swelling, and tenderness of the cartilage of one or both ears. The pinna usually loses firmness and becomes floppy; hearing impairment may also occur. Inflammation of the inner ear may also cause nausea, vomiting, dizziness, and/or ataxia. The ear can eventually deform to look 'like a boxers' ear or cauliflower ear'.

• Joint: The second most common finding is joint pain with or without arthritis.

• Eye: Affected people may experience episcleritis, uveitis and/or scleritis. Scleritis may lead to a bluish or dark discoloration of the sclera (white of the eye) and may even be associated with vision loss in severe cases.

• Nose: Nasal cartilage inflammation may lead to stuffiness, crusting, rhinorrhea, epistaxis (nose bleeds), compromised sense of smell and/or saddle nose deformity (a condition where the nose is weakened and thus "saddled" in the middle).

• Airways: Inflammation may affect the larynx, trachea (windpipe), and bronchi (tubes that branch off the trachea and carry air to the lungs). Airway involvement may lead to a cough, wheezing, hoarseness and recurrent infections. It can become life-threatening if not properly diagnosed and managed.

Less commonly, RP may affect the heart, kidneys, nervous system, gastrointestinal tract, and/or vascular (veins) system. Nonspecific symptoms such as fever, weight loss, malaise, and fatigue may also be present.

Let's get together and see what those of us diagnosed with Relapsing Polychondritis have in common. Because RP is so rare, new things about it are being found out all of the time.  

Summations from the Facebook group:

As those of use living this disease each day in and day out, we have found some commonalities among us. We find so very many symptoms that all of us share. Usually all of the above with a strong percentage with these other conditions.

• Many of us have problems with our spines, bulging discs, Degenerative disk disease, herniation, stenosis
• Tinnitus 
• Costochondritis
• Multiple urinary tract infection
• Pain across the face
• Exhaustion not associated with the drugs
• An interesting number has Trigeminal neuralgia
• Labral Tears in our hips