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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 I thought I would take the next several posts to talk about what the first year of living with Rheumatoid Arthritis is like. I’ll talk about what I went through; noticing a few symptoms, realizing the need to see a doctor, handling the diagnosis, experiencing treatments, all the ins and outs of the introduction of RA into a sufferer’s life.

 I think the first time I ever realized that there was something not quite right was driving with my mum down Main St. in Gaylord, Michigan. I stopped at a red light and started rubbing my hands because, they ached a lot and it was getting difficult to hold the steering wheel comfortably. My mum asked what was wrong and I said that my hands had been hurting for a few days, but I didn’t really think anything serious about it. A few days later, I noticed that my feet and knees were tender and a bit swollen, and still my hands were aching so I made an appointment with my doctor, and went without any expectation of what she would say.

 I told her about my stiff, sore hands and my swollen tender knees and feet. She asked about my energy level, which I said seemed a bit low, but I had assumed it was due to the fact that 8 months before I had major surgery and knew how long it took to completely recover, then she looked at my hands and feet, and said, “I’m pretty sure you have Rheumatoid Arthritis.”

 Like I said before, I had no expectations as to what I would hear from my doctor, but Rheumatoid Arthritis was completely out of the blue. “Didn’t old people get this?” I remember my grandmother’s hands and fingers all bent and twisted, and looked at my own. That’s what’s going to happen to me? “This isn’t right, I’m too young!”

 She sent me on my way with some information, blood work orders, and a referral to a rheumatologist in Petosky. I drove home, sat at my piano and cried. I’ve played the piano all my life, before I could even write my name, and now I have some stupid disease that is going to rob me of it! My despair turned into anger and I got on the internet and began to stare this condition in the face.

 At first, the information I found was a bit discouraging- there’s no known cure, it causes a lot of pain, it can affect other organs, and can shorten one’s life. Wow! I felt great!! (A little bit of sarcasm there) I kept looking and found that there were people who have been living happy, satisfying lives even with RA, and a spark of hope started. I’m a stubborn person and can sometimes be a bit cheeky, so I made the decision right then and there that I was not going to let Rheumatoid Arthritis take a full life away from me, and pretty much told it to bring its A-game because I’m planning on ‘jersying RA and scattering it’s chickens’! (A Canadian term meaning to pull one’s opponent’s hockey jersey over their head and continue to pummel them.)

 The next few weeks were a bit challenging with handling pain, trying to find shoes that didn’t hurt my tender feet (the only ones that worked were men’s sandals, they were ugly and I was NOT happy about that!!), and waiting to hear the results from my blood work. I wrote down questions to ask my new doctor, and continued to research and fortify my determination to defeat this adversary.

 How did you handle your first few days or weeks after hearing the diagnosis of arthritis? What was racing through your mind? Was it a shock or did you have a suspicion? I’d love to hear your story…

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Living with Rheumatoid Arthritis can make a person feel very lonely, and definitely not very glamorous. A recent little search online into celebrities suffering with RA made me feel a little less isolated and maybe not so awkward feeling. Stiff fingers and sore, aching knees don’t seem quite so painful when you can watch others live with it as well. Those with more spotlight shining on them are able to give voice to not only themselves but those who can identify with them.

 I watched “the Soprano’s” every week, and not until today did I realize that Aida Turturro, who played Tony’s sister Janice, has also been diagnosed with RA since a young girl. Now in her 40’s, she has become the spokesperson for “Joint Effort Against Arthritis,” an American arthritis awareness campaign sponsored by the Arthritis Foundation. It’s also sponsored by Centocor, a US company that makes a well-known arthritis drug, Remicade.

 I always thought James Coburn was a cool guy: tough, strong and silent with a rough cynical sense of humor. I like the late actor even more now because I’m able to identify with him and the discouragement of living with constant pain and the medical community not being able to supply any relief. Like him, I went off conventional medications like Plaquenil and Methotrexate and tried something a little unorthodox. He found deep tissue massage, electromagnetic treatments, and MSM to do the trick, I’ve found daily exercise, watching my diet, and Lyprinol (green mollusk extract) to help way more than what the doctors were prescribing me. *Just a reminder: I’m not suggesting anyone should toss their physician’s advice!!

 Way back in 1928, Lucille Ball was diagnosed at the age of 17. She was a young model at the time and was told that she would be wheel chair bound for the rest of her life, but after 2 years of barely being able to walk, with metal braces on her legs, and other medical treatments, she overcame this road block and became the television sweetheart known the world over.

 Being able to witness victories won over Rheumatoid Arthritis gives a sufferer a little more strength and encouragement to keep going. I can relate and gain from their experiences; feeling a little more inspired when the going gets tough and maybe even feeling a touch more glamorous!

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I have 2 strikes going against me when it comes to the health of my heart.

Strike one- Marfans Syndrome, a condition that causes my connective tissue to be defective and not act the way it should. It affects my skin, bones, eyes and my heart. At present, I only have a heart murmur, but more severe cases include aortic dilation, leakage, tearing or rupture.

Strike Two- I have Rheumatoid Arthritis which can cause inflammation of the membranes surrounding the heart. Thank goodness this isn’t baseball or I’d be out next strike!! I don’t like baseball and haven’t watched it since the Jay’s won the pennant in ’92. I’m a hockey fan!

OK, back on track… heart disease and Rheumatoid Arthritis. A study done by Mayo Clinic researchers uncovered some results that would suggest Rheumatoid Arthritis sufferers have a higher risk of heart attacks and sudden cardiac deaths. They studied 1206 people over a period of 26 years. 603 people had RA the other half did not. The entire grouped was matched in age, gender and location. Conclusions were made that people with Rheumatoid Arthritis are 3 times more likely to have been hospitalized for an acute heart attack, less likely to have a history of chest pains and 5 times more likely to have an unrecognized heart attack because of pain medications masking pain, and twice as likely to die from sudden cardiac death.

Fortunately for me, I’m on a pretty hefty dose of blood thinners because of a blood clotting disorder so I don’t have to worry about that kind of blockage. I’m not overweight at all, and that eliminates some stress on my heart. I do however need to be vigilant about how Marfans affects my aorta and that Rheumatoid Arthritis can cause membrane inflammation. Keeping my doctors informed, educating myself on what to watch for, new possible treatments, and keeping myself fit will all be beneficial to the wellbeing of my ticker.

Is your RA affecting your heart? Got some experience you’d like to share? By all means, send me a comment!

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Obviously, I’m a woman (gosh, I hope that’s obvious!), I’m also a   woman with Rheumatoid Arthritis. Is there a slight connection of my developing this condition to my gender? Do women respond to the disease and treatment differently from men? These have been two questions that I thought would be interesting to get some answers to.

So what is this relationship between being a woman and having Rheumatoid Arthritis? RA can strike at any age, but most commonly a sufferer will first be afflicted in between the ages of 30 to 60, and it’s 2-3 times more common in women than in men. Several studies suggest that women experience more pain with Rheumatoid Arthritis than men. Now some may say that men can handle pain better… talk to me after you’ve had a baby!

At Karolinska Institute in Sweden researchers have been doing a few studies on some gender-specific tests on RA and some interesting results are being discovered. For instance, life quality is eventually more impaired for female sufferers than it is for male sufferers, the underlying reason may be that the medications are tolerated differently between men and women.

A study at the Institute on a specific therapy revealed that men responded significantly better to the therapy than women who had the same treatment, joint swelling and the sufferers own experience of the disease was also taken into consideration. The therapy just seemed to have a better affect on the men than on the women, the women felt sicker than the men. Hmmm, interesting.

This was something I found very relevant- women often develop Rheumatoid Arthritis when sex hormones are changing, perhaps after pregnancy or menopause. It’s not clear why this is but researchers have made a connection between hormonal factors and a woman’s chance of developing RA. This seems to be where I find my link.

Just before my second daughter was born I was put on blood thinners because of a brain clot (I’m going to need to be on blood thinners for the rest of my life) and because of the thinness of my blood, every month I was in incredible pain and losing so much blood I was becoming anaemic. Eventually I received a hysterectomy in 2004 which made life SO much better, but 10 months later I was diagnosed with Rheumatoid Arthritis- coincidence?

Being a man may have made things a bit easier but I just wouldn’t look as good in my favorite bikini! I’m still VERY happy being a woman, even a woman with Rheumatoid Arthritis.

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