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 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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Last summer, as I sat on the deck over looking Lake Superior, I saw a dark thick cloud bank rolling in from the west. It had been a beautiful clear and sunny day, but as I saw the new weather charging in, I knew pain was coming along with it.

Cooler temperatures and humidity are often not an arthritis sufferers friends. At least that’s the way it is for me; but that’s not always the case for others. Some claim the opposite, low pressure weather systems have a positive affect on their Rheumatoid Arthritis symptoms.

Many tests and experiments have been made to find exact reasons for this cause and effect; and while there are definite implications, doctors note that it’s not the same results for everyone across the board and have no explanation as to why that is. Sunny, warm and clear skies which make me feel wonderful can have the opposite reaction to some one else suffering from Rheumatoid Arthritis.

So what’s to be done? The best thing is to be well informed. Know your triggers and keep an eye on your environment. I myself, check the weather reports at least twice a day to see what’s coming up, and if I see some low pressure, cool weather approaching, I get ready for it.

Sometimes it’s as simple as keeping myself warm with extra clothes. Other times I need to take it easy and spend some quality time with my heating pad in bed. It definitely pays off to be well aware of what’s going on around me.

How does the weather affect your Rheumatoid Arthritis symptoms?

To go off on a tangent… I thought I’d put some more pictures up from my vacation to Niagara Falls. It’s a great place to have a ton of fun!

The gentle belugas getting a snack at Marine Land.

“Mel Gibson” and I at the wax works museum.

Mr. Buffalo with a cracker stuck on his nose. He was not happy when my husband put it there!

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As a person living with Rheumatoid Arthritis, I’ve looked down a few avenues to find relief and aid in fighting this disease. One avenue that has brought a bit of success for me is holistic or naturopath remedies.

I have only just begun this venture the past 5 months so I’m not a deep well of knowledge and experience, but I do have a bit that I can share first hand. My favorite is the lipid extract of the green mollusk of New Zealand.

I need to take 9 MG of warfarin daily, which means that I’m not able to take most anti-inflammatory medications. The green mollusk lipid extract (Lyprinol) is the only anti-inflammatory that I can take without having my coagulation compromised. I’ve had a lot of success with it.

I recently have been finding out more about this neat little tid-bit. Perna carnaliculus have been used to treat not only rheumatoid arthritis but also osteoarthritis, asthma and inflammatory bowel disease since the late 1970’s. Scientists, more recently, have discovered that the biologic necessity is in the lipid and not the protein of the mollusk. It contains high levels of omega-3 fatty acids and works against substances in the body called leukotreines (they are responsible for some aspects of chronic inflammatory responses).

Read more at

http://www.liebertonline.com

It took about a month before I really noticed a difference, but it was wonderful. Flare ups are taken care of quicker than before when I didn’t have any anti-inflammatory to take. I would not recommend anyone with a sensitive allergy to shellfish to try this therapy. But, for those who are also on blood thinners and restricted from medications, or maybe you’re just wanting to try something different to see if it works out- talk to your health care provider about green mollusk lipid extract, this may be the start of some new relief for you! Since rheumatoid arthritis is a personal disease, affecting each individual in a unique way, sometimes we have to search a bit to find the proper solution for ourselves.

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I came across this article and found it very interesting…

A study was done, involving 2,750 participants in Sweden on how alcohol can affect arthritis. For those who drank approximately 5 glasses of wine each week, the risk was cut in half of developing Rheumatoid Arthritis. Those who smoked showed a very significant risk factor.

Alcohol ‘cuts risk of arthritis’
…Researcher Dr Henrik Kallberg stressed the most important finding of the study was that smoking was a very significant risk factor for rheumatoid arthritis, reinforcing findings from previous studies.
However, he added: “In addition, it is important to know that moderate alcohol consumption is not deleterious and may in some contexts be beneficial concerning risk for future onset of rheumatoid arthritis.”
There are known to be links between moderate alcohol consumption and a reduced risk of other inflammatory processes, such as cardiovascular disease. However, the reason for this is still unclear.
Professor Robert Moots, from the Arthritis Research Campaign, said it was possible that drinking alcohol may have a protective effect against rheumatoid arthritis.

But he said the study was not conclusive and any protective effect was not properly understood.
He said: “There is no doubt that drinking too much is very bad for our health in many ways and these risks by far outweigh any potential benefit for reducing the risk of rheumatoid arthritis, which this study points to, without being conclusive.

“We must also remember that drinking alcohol in excess can be especially dangerous in patients taking some anti-rheumatoid drugs that may cause liver damage.

“There are many modifiable lifestyle risk factors for developing rheumatoid arthritis and, as this study also points out, smoking is by far the greatest.”

A spokesman for Arthritis Care said: “It’s too early to say what these findings may mean, so people with rheumatoid arthritis should continue to work in partnership with their health professionals to address their specific health needs.”

Story from BBC NEWS:

http://news.bbc.co.uk/go/pr/fr/-/2/h…th/7435002.stm

I myself like to enjoy a glass of white wine every evening- just one. I’ve found that I feel better the next day. If I’ve missed a few days, I feel it. I do encourage that before anyone launches into this therapy, they discuss the implications with their Doctor because of possible interactions with other medications, or if there is a history of substance abuse/dependency.

Cheers!

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