Rheumatoid Arthritis Symptoms Don't Rule My Aud Life

You’ve been referred to a Rheumatoid Arthritis specialist (Rheumatologist) and you’re anticipating your first visit. I’m sure you’re feeling anxious, nervous, intimidated and perhaps scared out of your wits, gathering your thoughts together and writing down questions to ask can make the most of your first visit.

For me, I had no idea what to expect, but I had a lot of questions that I needed answers to.
Here are my top 9 questions that I asked my Rheumatologist on my first visit.

1. Do I have arthritis? I know some blood work had been done, and my family practitioner suspected it, but I hadn’t had a definite answer.

2. What type of arthritis? I wanted to make sure that I had Rheumatoid Arthritis, and the Rh factor confirmed it.

3. What the first bit of treatment? My family Dr had given me cortisone shots but I wanted to know the next step, which was Plaquenil.

4. What does this new treatment do? Alright, so I’m on Plaquenil- what the heck does it do? Is it a pain killer? NSAID? Anti-inflammatory?

5. How long until I notice improvement? I needed a time line, something to set my sights on, and I was told it would be about 6 weeks before I really noticed a difference.

6. What if it doesn’t work? If Plaquenil didn’t put the disease into remission, then methotrexate would be prescribed.

7. How will my progress be monitored? I was told to keep careful watch and record anything new, and to bring all this information back with me on my next visit. Participation on both sides of the table is very important and can make treatment more successful.

8. What other tests will I need? I had already had some blood work to determine the Rheumatoid factor, but a test for Marfan Syndrome was also ordered, x-rays and a biopsy procedure were also booked.

9. What else can I do to help myself? I couldn’t just leave it up to the rheumatologist to fix my problem, I wanted to be a part of it too. I was advised to keep physically active as much as possible, to watch what I was eating, keep my stress level low and to rest as often as I could.

So, don’t be afraid to get involved and ask questions. Doctors aren’t mind readers, they need to be asked sometimes in order to share information.

What other questions would you ask your doctor?

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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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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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When I was first diagnosed with Rheumatoid Arthritis in 2005, I didn’t know anyone else with this condition. I was overwhelmed, a bit frightened and felt very alone. I thought RA was a disease that only affected the elderly and had no idea how I was going to cope with it.

Immediately I started researching and educating myself, not only wanting to find relief from the pain but to understand why this was happening to me. I found that age has nothing to do with it which made me think that there may be others, my age and station in life, going through the same thing.

No one in my little corner of the world, except a neighbor I see occasionally while I’m walking the dog, is dealing with Rheumatoid Arthritis pain. It wasn’t until I started getting involved in some forums that I found people in the same situation.  A whole new world opened up, there were people who really understood what it is like to live day to day with arthritis and Marfan’s Syndrome.

Living with chronic pain can make a person feel isolated, especially if they are the only one in their family and network of friends going through this. It’s comforting being able to ask questions, give advice and share what you’re going through. Somehow it seems to relieve some of the discomfort and it definitely helps with the stress.

I personally have had a lot of positive experiences with being involved in a few forums, coming away with a satisfaction of being a part of a community I can fully participate in! When I’m feeling down, maybe tired, in pain, or even if I’m having an amazing day, it’s a place I can unload.

What support do you have in dealing with your arthritis pain? Good experiences or bad? Let me know!

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