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

Giving It A Name is Half The Battle

Bingo! Rheumatologist #2

This doctor is a specialist in Autoimmune Diseases and is an associate teacher at the University Of Utah Medical School. He said he was 60% sure I had Wegener’s. I had the ANAC test result that said I had it but I was missing a few things. He kept saying that there was something that we were missing, I remained on Methotrexate. Some days were good and some weren’t. Then in December I went into my appointment on a day that wasn’t so good. I was sweating, my face really hurt, my nose and eyes were red, I was out of breath for no good reason. After talking with me for a while he decided to check my ears. That is when he saw it. My red ears. 

Can I say he was excited? He nearly did a happy dance. He brought in another doctor and asked her to feel my ears, yes, they were hot and red. He asked me why I hadn’t told him about my red ears before? Well, maybe because all things considered, that didn’t sound like it was a big deal. That is when he named it… Relapsing Polychondritis… a cousin to Wegener’s. He sat with me and went through all of my symptoms and yes, I have every one of them but one. Which one? The only one I would like and that is weight loss. Sigh….. He promptly tripled my Methotrexate. My appointment had taken a long time so he told me to go home and look up the disease. My husband wasn't in my appointment, he met me after and I had to go get some labs done so I told him the name of the disease and went to the labs. When I came back, my dear husband had a very strange look on his slightly ashen face. "Debbie, honey, this isn't good".

“God gave me my husband so we could weather the storms of life together.”

Symptoms of Relapsing Polychondritis by the National Institutes of Health

There are no tests available that are specific for relapsing polychondritis (RP). A diagnosis is, therefore, generally based on the presence of characteristic signs and symptoms. For example, people may be diagnosed as having RP if they have three or more of the following features:

• Inflammation of the cartilage of both ears
• Seronegative (negative for rheumatoid factor) polyarthritis (arthritis that involves 5 or more joints simultaneously)
• Inflammation of the cartilage of the nose
• Eye inflammation conjunctivitis, episcleritis, scleritis, uveitis
• Inflammation of the cartilage of the airway
• Vestibulardysfunction (i.e. vertigo, hearing loss, Tinnitus

Every one! I had every stinking symptom. I was excited to give this craziness a name, until we delved into it more. See Three Ring Circus-Symptoms.

Where Do We Start Looking?

We made appointments everywhere to get checked out to see what autoimmune disease I was harboring.

• Spine Clinic:  While waiting for the Gastroenterologist I visited the Spine Clinic to see if we could find out the source of my back, side and hip pain. I thought that back pain was my kidney. It wasn’t and we finally decided it was my hip and spine. We had an MRI done on both my lumbar spine and right hip. A growth was found on my L5 and I had a lumbar epidural steroid injection. This did give me some relief for my back but that hip still hurt. I also already have cervical spinal stenosis and I had an epidural steroid injection for that too.

• Physical Therapy:  After some physical therapy for bursitis in both hips my physical therapist read my CT scan from my hip and told me I had a labral tear in my right hip. First takeaway: Found the pain in my hip. Had no idea the source of the tear.

• My neurologist ordered a brain MRI to see what was causing the pain in my face. Good news, I still have a brain and no tumors. I do have Trigeminal neuralgia  

• Gastroenterologist: My ophthalmologist mentioned Crohn's disease could be the culprit among other autoimmune diseases. I visited a Gastroenterologist who set up both a colonoscopy (check for Crohn’s) and endoscopy to see why I was in so much stomach pain. No Crohns yippee! However, my stomach was covered in small holes that were bleeding. These were around 40 tiny peptic ulcers probably caused by all of the NSAIDs I had taken for the pain I was in. Tylenol just doesn’t cut it for me. He took a biopsy of my stomach. 

This great doctor took a lot of blood tests then as he was leaving our appointment, almost as an afterthought, he ordered one more test. He said it was rare and the hospital lab draw would have to pay a lot of attention to this order. It was for ANCA. Takeaway: Bingo. He found the key to getting into a Rheumotologist.

With all of these tests we have found that I'm a real gem.

Oh, My Goodness, I’m rich!

Silver in the hair

Gold in the teeth

Crystals in the kidney

Sugar in the blood

  Marbles in the knees

Iron in the arteries

Diamonds in the cataracts

-:-             

I never thought I would accumulate such wealth 

......hee hee