Rheumatoid Arthritis Symptoms Don't Rule My Aud Life

In my last post I left off venting about my ‘ugly man shoes’ and the anticipation of meeting my Rheumatologist during the first few weeks of being diagnosed with Rheumatoid Arthritis. It was early September of 2005 when I made the 45 minute drive from Gaylord to Petosky to meet Dr. Huebner at the Burns Clinic, and I sat in the waiting room not quite sure what to do. I heard my name called and followed the nurse into an examination room where she took my vitals and made a few notes.

Dr. Huebner came in shortly afterwards and did a double take. He looked at me, looked back at my chart in his hand, flipped a few pages and then looked back at me and asked, “Are you Audrey Katzenback?” I nodded and said, “Today I am.”

He looked back at the chart, “You’re only 30!”

“Yes, I remember my Birthday Party.”

“I thought you were much older. You’ve had 3 strokes and a hysterectomy. I don’t think I’ve ever come across anyone your age with this kind of history.”

“What can I say; I’m an Internalist’s Dream!”

After a review of blood work that confirmed the Rh factor in my blood and a check of my swollen, painful joints, he made a few comments about the hyper-mobility of my joints and the fact that my skin was quite loose. He asked if I had had any troubles with my heart and I told him I recalled having a heart murmur confirmed by ultra sound when I was 13.

“Well, you have RA, that’s for sure; but I also think you have Marfan’s Syndrome.”

Marfan’s Syndrome? It sounds like something a UFO would suffer from.

“Well, why not?” I thought, “Nothing surprises me now!!”

At that point I could’ve been told that I had male-pattern baldness, would be growing 3 more toes and my nose would fall off and I would not have been shocked.

More information was given to me about RA and now Marfan’s Syndrome, plus blood work ordered to confirm the newest condition, and another appointment was made to perform a biopsy on the bruised lumps on my knees. I left Dr. Huebner’s office more confused than before I entered it, not what I had hoped.

Back to the research, and things began to make a bit more sense when I was able to find facts for myself. There was so much information and help out there, it took quite a bit of the over-whelming sense away.

I had been prescribed Plaquenil when I first visited my regular Doctor a few weeks prior and that seemed to be kicking in and helping. Pain medications, mainly Tylenol 3, made it possible to exercise my joints, giving me more freedom, inflammation was going down, and the ‘ugly man shoes’ got tossed into the back of the closet! Things were looking up, but with any disease, things don’t always stay fine and dandy!

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Along with Rheumatoid Arthritis, there are other syndrome’s and conditions that I live with. In 2000, doctors discovered that my sister and I shared a condition called ‘congenital protein C deficiency’; which is caused by a lack of the protein C  in the fluid portion of blood. Proteins C and S are natural substances that prevent blood clots (anticoagulants) and my sister and I are deficient in protein C.

It wasn’t until clots formed (right lung in my sister, and right side of the brain in myself) that the doctors discovered this. I suffered 3 strokes due to the initial forming of the clot and the movement of it. Since then, and for the remainder of our lives, we’ll need to be on high doses of warfarin daily.

The blood thinners are the biggest road block when it comes to treating my Rheumatoid Arthritis. I’m unable to take Ibuprofen and Aspirin because of the negative interactions, and most anti-inflammatory medications are off limits to me as well. When major inflammation occurs, I form large lumps (especially on my knees) which turn into large, ugly bruises. In the beginning of my diagnosis, my Dr. performed a biopsy on one and came to the conclusion that during a flare up, my joint will bruise like a jelly donut inside and the inflammation will squish it out! Mmmm….donuts!

At the same time I was diagnosed with RA, it was also discovered I had Marfan Syndrome which is a genetic disorder of the connective tissue. People with Marfan’s are typically tall, with long limbs and long thin fingers. I am 5′11, with a 6′1” arm span!

The most serious complication is defects of the heart valves and aorta. It may also affect the lungs, eyes, dural sac surrounding the spinal cord, skeleton and hard palate.

Fortunately, my symptoms are mild; a heart murmur, joint hyper-mobility, stretchy skin, slight problems with my eyes and ears, and of course the long, slender arms, legs, fingers and toes.

Since Marfan’s is a connective tissue disease that affects my heart, and that Rheumatoid Arthritis can also have serious affects on the heart, I need to take extra care in my health. Keeping my RA under control is a very important factor and I need to be on top of that.

Do you or some one you know suffer from Rheumatoid Arthritis and other conditions as well? I’d love to hear your story. Drop me a line!

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