Where to Find Help

But you don’t look sick…… It is really meant as a complement I suppose. Invisible diseases? Why do they call them that? When do you look like a disease?  They don’t know how much under-eye cover up I’ve had to use to cover the purplish shades around my eyes from the chemotherapeutic drugs, or the spots on my face from my inability to tan because of severe medication reactions. Or the most covering base, and the eye shadow shading to bring out my shrunken eyes. The rounded moon face and weight to your middle from prednisone. To be honest, it really is hard to find what to say to someone with an illness that will likely take their life. 

A good article is I Won't Apologize for Having Fun While Chronically Ill

Earlier in the year a dear friend stopped by one day with some new makeup she was selling and said we needed a little fun, play makeup time. She showed me how to hide the deep hallows I was getting around my eyes. Here I was 64 years old and playing with new makeup. It was fun. She could feel my need to not look sick and followed the call. I am faking being well. That is the plan.

The children all told me to start a blog to help others in their journeys with this one-in-a-million or (3-to-5-in-a-million) disease. (I’ve seen it described both ways). I really think that there are many more of us in the world with the disease, but the doctors just don’t know about it to diagnosis it.

In my research for information on RP I came across a video by Debby Brown. I love this woman!! 

• She has a great since of humor
• She is a quilter
• She has the very same, strange issues that I have
• Her advice is awesome
• She talked about a Facebook group for RP.

Talk about making my life a lot better. I found that Facebook group and realized that RP has brought together some of the most incredible people. This group has taught me far more than my own Rheumy doctor has and how to take the best care of myself. We are from all around the world yet so very close in spirit. 

Check out different FaceBook pages for:

• Relapsing Polychondritis
• Methotrexate Support
• Costochondritis Support
• Rare Disease on The Mighty
• AIP (Autoimmune Protocol) Diet Recipes
• Pediatric Relapsing Polychondritis

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.

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 -:-

I’ve Become A Passenger

  "Now it is well known that when there are many of these flowers together their odor is so powerful that anyone who breathes it falls asleep, and if the sleeper is not carried away from the scent of the flowers, he sleeps on and on forever"

Exhaustion was now my constant companion. Deep, heavy, debilitating, complete, all encompassing, weak exhaustion. All I could do was get out of bed and get dressed. Sometimes, just getting out of bed was all that I could accomplish. I didn't need the sweet smell of poppies to put me to sleep. This was totally not the get out of bed and go to the swimming pool at 5:30 in the morning gal. My eyes were still blurry and I was trying to do my part as the Publicity Chairwoman of the Festival of Trees a charity to help children at Primary Children's Hospital. I felt very grateful for 2 good hours a day. See Three Ring Circus - Symptoms.

Help was on the Horizon The Internist

As with the other doctors he was great. Up until now everything was a mystery until he saw the ANCA blood test result - positive. He said he finally knew what was going on with me. He ordered a CT scan of my sinus and an x-ray of my lungs. He set me up with a Rheumatologist and told me I had Wegener’s (Granulomatosis with polyangiitis). 

We are now 5 months after the attack on my eyes. I was getting weaker and weaker. Always in pain, my chest, knees, hip, ears and face. My balance was all off. We had visited every doctor imaginable. My patient husband and I have probably spent enough money on doctors and tests that we could buy a small luxury car. (just kidding) But we are in the USA with the best medical treatments available. No complaints….Sigh…

Rheumatologist #1

The ANCA test and a referral from the internist finally got me into a rheumatologist.  He said it sounded like Wegener’s but not everything was in place for that. He started me on prednisone. Can I say here how much I hate that stuff? The weight gain is just not fair!!! He wanted to have whatever was attacking my eyes stop. As soon as I started the prednisone I came back alive somewhat. That was important, my responsibilities were massive and I had dead lines, meetings, phone calls, meetings with the press, printers, executive board meetings for the Festival of Trees. 

Then after a while on ‘the drug that shall not be named’ he put me on Methotrexate. Methotrexate is a chemotherapeutic drug that weakens the immune system to get the body to stop attacking itself. I researched it and decided I would rather give myself the shots over taking the oral medicine. The side effects weren’t as pronounced.  I really improved on the Methotrexate. The extreme exhaustion was lightened. I explain this exhaustion as the feeling you get after running a marathon, crossing the line and going into a joyous limp body. However, this exhaustion comes after no exertion and there is no joy in it at all.

Sometimes my husband would drive me places because my eyes were tired and blurry.  Sometimes my body would play an evil trick on me and just stop moving when I was in the middle of meetings or driving the 45 miles to do all my publicity errands. It is extremely hard for an independent woman that has run her own business for years to become a “passenger”.  One day, I exclaimed to my husband “I’ve become a passenger” like it was a black mark on my character. Caused him some chuckles, but I was serious.

I pushed myself very hard to get through our Festival, the first full week of December. I did my best to not let how I felt be seen and my friends were incredible supports. I love serving my community by helping with that Festival. It has been part of my life since 1998. 

My Rheumatologist watched me go excitedly through the process to help this charity event come to fruition. When it was over he kindly told me that my inflammation level was extremely high and he rarely if ever does this but, in my case, he needed to say it. "Under doctor’s orders".... I was to give up my charity work. Although it is something I love, and it didn’t feel like stress, but it was still stressing my body. I think that is the first time I truly felt somewhat broken, at least my heart was. He also told me to see an ENT (Ear Nose & Throat doctor.)

Being of service to others is what brings true happiness.
-:- Marie Osmond -:-