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.

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 -:-

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