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

Stressed Spelled Backwards Is Desserts

Ear Nose & Throat doctor #1

After examining me, he ordered a throat swallow test. I was having troubles with swallowing my pills, they were getting stuck in my throat. I would drink a fizzy drink to help them dissolve, I thought if this Diet Coke can clean toilets, then it can melt pills that are stuck in my throat. Nope didn't work. Then how about melting the pills in my throat, hot chocolate, I would melt it with warm liquid. Still things stuck. I was told at my swallow test to take my pills one at a time, then follow them down with applesauce or Greek yogurt… helps. My throat has narrowed some and there is a small hiccup in my final swallow… whatever that means. He wanted me to see a specialist at our University Medical Center that works with Wegener’s but he couldn’t remember his name.

The Rheumotologist told me that I would now have a new normal. Inflammation was my enemy. These types of autoimmune diseases feed on inflammation. How do you stay away from stress? One way is to stay away from contention. Or the catch phrase now is toxic people. 

"Jesus did not say, “You are not allowed
to feel true pain or real sorrow from the
shattering experiences you have
had at the hand of another.”
Nor did He say, 'In order to forgive fully,
you have to reenter a toxic relationship
or return to an abusive, destructive
circumstance.'"
-:- Jeffery Holland -:-

I always love what Hank Smith has to say. Only once I have crossed paths with a few real toxic, gossipy people. The only way to win is to not play their games. Boundaries are healthy. My disease is fed by inflammation. As I'm writing this blog about my RP journey, I look back I can see how the disease spiked when I had to deal with them. If someone is toxic, gracefully move on.

"Boundaries are healthy. Enabling any sort of abuse is not Christ-like. The Savior had firm boundaries throughout His life. You can forgive someone and move on without them in your life. You can say, “I forgive you. I hope you are happy. I wish you the best. Goodbye.” To think you have to return to a potentially cruel and painful relationship in order to forgive is simply not true. Some relationships need to be severed in order for everyone involved to move forward and heal. The trauma of betrayal can be too overwhelming to be able to be in close proximity to the betrayer. This doesn’t mean you haven’t forgiven, it means you are trying to keep yourself emotionally, physically, and spiritually healthy for those you love." -:- Hank F. Smith -:-

Now then not all stress is bad stress, my service at Festival of Trees was stressful but I loved it. I taught Gospel Doctrine in Sunday School and it is stressful to teach adults but it was enthralling. These things I had to let go so I could mellow out and get my inflammation down. 

My favorite remedy for stress is this saying

Stressed Spelled Backwards Is Desserts

Ice Cream is my remedy of choice!

Ear Nose & Throat doctor #2

A referral was sent and I was off to the University Medical Center. They sent me to another ENT by mistake but after the appointment with me I had a hearing test and this doctor knew the right Rheumatologist I needed to see that specialized in Wegener’s and other Vasculitis diseases. See Three Ring Circus-Symptoms.

 “He rarely moves the mountains in front of us..... but He always helps us climb them.”

-:- Sheri Dew -:-