Rheumatoid Arthritis Symptoms Don't Rule My Aud Life

I’m not in contact day to day with another person who has a chronic condition like I have (at least not to my knowledge), so I don’t know what it’s like dealing with a person with an autoimmune disease like Rheumatoid Arthritis. My only point of view is from the side of the sufferer (the sufferer with RA), living with people who don’t have RA.

My post about ‘Arthritis Myths’ sparked this topic for me, when I wrote about how people assume you can’t or shouldn’t do anything anymore. It’s almost as frustrating as the pain in my joints. Most people are either one way or the other; treating me like a child who can’t cross the street without holding hands or not realizing how much pain and fatigue I feel during a major flare-up. There doesn’t seem to be too much of a happy medium, and trying to explain how you feel over and over gets old after a while.

I’m sure that every Rheumatoid Arthritis sufferer feels the same at one point or another. When people first learn that I have RA I’m treated with kid gloves, like I’m going to break into pieces if I do anything more strenuous than sitting down. But in all honesty, most of the time, the more I active I am, the better I feel. I love power walking a few miles every day, yard work and digging in the dirt is bliss for me, and when it comes to power tools, whether construction or destruction… stand back and let me play!

Being able to be independent is certainly important to me, but I’m also not a martyr. When the pain, aches and fatigue are too much for me handle without a grimace, I am usually able to put my stubbornness aside and ask for help, and most of the time help is given. I do remember one person who made a comment about how he didn’t think that Rheumatoid Arthritis hurts that much. I asked him if he’d ever been stung by a bee and he said he had. I asked him if he thought it hurt.

“Of course it did,” he answered.

“Well,” I returned. “My RA is like having bee stings in every joint. Hands, feet, knees, shoulders and elbows.”

That bee must have stung him pretty good because he never made a comment like it again.

I think I can also be honest in saying that I do get jealous of ‘normal’ people who don’t have to get up early just so they can get the stiff soreness worked out before the rest of the family wakes, who get to enjoy a glass of red wine, not have to worry whether the in coming low pressure system will set off a flare up. But I also see the blessing side of it. I’ve discovered that I can handle more than I thought, it’s made me a stronger person, and I’m much more empathetic to other people’s pain.

Living with the “normies” can be challenging, the main challenge being that they just don’t have a sweet clue as to how I am truly feeling, but it’s not their fault; they just aren’t as ‘blessed’ as I am!!

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I’ve come across some funny comments that people make when they learn I have Rheumatoid Arthritis, some comments are just simple while others I find more frustrating. So here are some myths to illuminate the facts.

Myth #1- Rheumatoid Arthritis can be cured.
Oh, how I wish this was true. Right now there is no known cure for Rheumatoid Arthritis. However there are a lot of successful treatments and procedures to slow it down and put the disease into remission, and increase the quality of life of a sufferer.

Myth #2- Rheumatoid Arthritis is an old person’s disease.
Some days I do feel like I’m 90 years old, but I’m only 33. RA can strike at any age. Children, young adults and middle aged people can be affected, and this condition doesn’t care whether you’re male or female.

Myth #3- “You felt fine yesterday, why are you feeling so terrible today?”
This is one of the frustrating myths. Although sometimes I do get a bit of a warning when a flare is going to hit, but that doesn’t happen all the time. Some mornings I wake up feeling like I’ve been hit by a Mack truck!! I may feel tired and achey, or in a lot of pain. No real explanation other than RA involves periods of flare ups and remission, and you roll with the punches.

Myth #4- Rheumatoid Arthritis is caused by the wet cold.
While I am personally affected by the weather, not all other sufferers experience the same thing and the cold and wet not the cause of the onset of the disease. Pain is caused from inflammation and the deterioration of cartilage in the joint. For me, warm baths, and other heat sources are very soothing for sore joints, and I feel pretty good when the climate is warm and dry.

Myth #5- Rheumatoid Arthritis only consists of minor aches and pains.
Yeah, another frustrating myth. I hate those commercials that say “Pop a couple aspirin or Advil and all your arthritis pain will be gone!” I’d love to scatter their chickens! All arthritis sufferers know that this is a crock of….(you fill in the blank)! RA hurts and it hurts a lot, and it’s more than aspirin, extra strength Tylenol or Aleve can handle. A regimen of diet, exercise, supplements and other medications is usually the best way to overcome RA pain.

Myth #6- Rheumatoid Arthritis is caused by poor diet.
Sure, I believe that diet greatly affects a Rheumatoid Arthritis sufferer’s life, but it’s not the cause of the disease. I feel that the digestive system plays a major roll in the immune systems function and since RA is an autoimmune disease, I like to keep an eye on what I’m putting into my body, and I keep track on how I feel after I eat something, especially if I’ve never had it before or haven’t had it in a long time.

Myth #7- “If you have Rheumatoid Arthritis you can’t do…..”
Wow, not something to say to a stubborn person! There are some things I’m  not able to do, and some things I probably shouldn’t do, but most are because I’m a woman, not that strong, and I’m an incredible klutz. A certain amount of help is likely to be required when fatigue and pain are at their worst, but some try to do too much for a sufferer and it can limit them. Certainly RA interferes with some physical activity but it doesn’t mean that someone becomes an invalid because of their diagnosis. Emotional and physical stimulation is an important part of Rheumatoid Arthritis treatment.
Have you come across some odd or absurd comments about Rheumatoid Arthritis? Share them! I’d love to hear them!

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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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The deep aches and sharp stings of Rheumatoid Arthritis pain are things I’ve learned to live with over the past few years. The first few months after diagnosis were terrible, I was incapacitated with pain. My feet and knees were so terrible I needed a cane to walk and my hands were useless to open jars, and buttons were impossible. I was quite an unhappy camper.

As I’ve said over and over, I dove into researching RA. Food became an interesting topic as I discovered that many others had noticed that certain foods caused more pain and discomfort than others. I thought I would give it a try; I had nothing else to lose.

Red peppers, red wine and shell fish were quickly noted as pain triggers and were begrudgingly eliminated from my diet, but still there was pain. How could I keep up with my young family? I had to find something better. I found weather played a big role and heating pads and hot baths became more frequent and favorite friends.

I noticed that stress would set pain switch on and if I wasn’t active for more than an hour, stiffness set in, so walking was put on the schedule, which also helped with relaxing stress away.

One particular thing weighed heavy on my mind and that was the dependency of pain meds. In the past, with other health situations I had gone through weeks and weeks of extreme pain and had been given copious amounts of narcotics, morphine, Vicodin and Demerol. But at the most I was 3 weeks relying on them because the pain was temporary and an end was in sight. This was different, I would be living with RA for the rest of my life, how could I get through without abusing drugs? Who in their right mind wants to live 24/7 with no pain relief? And narcotics certainly help deal with that, and wow, they make me feel great! It was a big decision to dig my heels in and be determined that I would do all I could to better this situation before relying on mind and body numbing drugs. So far, I have been doing a pretty good job of keeping pain away, and in dire situations I take a couple of Tylenol 3’s.

When living day in and day out with chronic pain, a person learns how to cope. I began to keep an eye on the weather in order to prepare myself for pressure changes, I always make sure pain meds were handy, heat sources close by and diligently keep my immune system as healthy as possible. But even all this doesn’t entirely remove it.

I barely notice it now, unless it’s a bad flare, or really take the time to think about it. I supposed I’ve gotten used to it so much that it doesn’t register the same as it did even 2 years ago. I deal quite well with the daily stiffness and aches, but the sudden flares still send me for a loop, probably because they are so infrequent now. The sharp pains that feel like bee stings in my fingers, elbows, knees and feet are horrible, and because I’m on blood thinners, the inflammation usually causes quite a bit of ugly bruises which makes me look like I’ve been beaten with a ball-peen hammer.

Yes, Rheumatoid Arthritis pain definitely gets on my nerves to say the least, but the more I live with it, the more I learn to fight it; and the stronger I get, RA’s grip on me gets weaker. Until a cure is found, I’m quite prepared to fight tooth and nail. Bring it on!

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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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