For Sandy Guerriere, life’s a beach. But that wasn’t always the case. Twelve years ago, at age 50, this avid walker and professional makeup artist hit a roadblock that stopped her in her tracks.
“I couldn’t walk. My ankles and feet swelled up badly, then my hands, wrists and fingers,” she says.
Career-driven and accustomed to moving at warp speed, Sandy says her diagnosis with rheumatoid arthritis (RA) and fibromyalgia has taught her the meaning of humility and loneliness, but it also has given her the strength to cope and never lose hope.
“When you have a chronic illness you lose a sense of self. You’re not the same person anymore,” says Sandy. “You’re isolated because you just can’t keep up with what other people are doing.”
Taking Charge
Two years after her diagnosis, Sandy had grown tired of the side effects from her medications and made the decision to stop taking them. “They told me I’d be in a wheelchair within six months without methotrexate,” Sandy says.
But she found another way. “Sometimes you just have to take charge,” she says.
She signed up for a warm water aerobics class and went every morning for a year until she lost the 20 pounds she had gained from the meds. She read countless medical studies, and then, using her own experiences and the help of a nurse practitioner who agreed to treat her holistically, Sandy discovered her formula for treatment.
“I’m very proud of that,” she says. “We’re responsible for our health. We know our bodies better than anyone and if we listen to our bodies and pay attention to the triggers, we can take charge of our lives and learn the personal coping skills, whether it’s walking the beach or dancing.”
When we take this journey it is possible to live with this disease, without the pain and suffering that we associate with RA.
I was diagnosed 12 years ago, and, like Sandy I couldn't live with the side effects of the medications.
I chose to take the medications until I felt I was able to support my health through the changes I had made, and, for me it worked, I have lived the past 10 years without need of medication and with minimal pain, no damage to my joints.
I like her article, except the acceptance that we will have to live with the damage caused by this disease.
I feel that Sandy has missed something, although she's made some very positive changes her body is still asking for more changes or she wouldn't be suffering the flares, and the damage would be limited to damage that was caused before finding a way to treat this disease.
RA must be treated, the damage this disease causes is too great to be ignored.
Her message though is inspiring, she has maintained an active life which many of us don't believe is possible.
My dream is that one day doctors will be helping us to learn about the maintaining health through diet. Food is medicine when you learn which foods heal the body.
But it is more than just food. As Sandy mentions in her article, it's about stress and emotions as well so just eating right is not enough.
I write about some of what I've learned so far in my journey and will continue writing as I learn. http://www.LivingWithRheumatoidArthritis.com
Thank you for sharing your story. My story shadows your's in many ways. Same age, have had RA for aprox same length of time, stopped the heavy drugs due to incredible being sick, bone loss, the pain was not eased, extreme tiredness, bumps developed on my elbows, ankles, and bottom of feet (painful walking), damaged my ankles while on the drugs, developed felty syndrome, etc. Stopped the drugs. Had the allergy tests. Changed my diet to exclude trigger foods and did many, many changes to my environment, emotional triggers, etc. It is an ongoing project. But, at this time it is working well for me. I am looking into taking a very mild drug to prevent further joint damage. thank you for sharing.
She has made a choice on how to treat this debilitating chronic illness, I wish her the best. I have made many of the same choices, an anti-inflammatory diet, nutritonal supplements that have proven to be helpful, Bikram Yoga three times a week as I don't live near a beach, and live my life as a Quaker to learn to come to peace with my world and my illness.
And, the medicines that advanced science affords me are key. They are part of my long range plan to being mobile and peaceful.
I think it is poor journalist ethics to not state the reality of this disease. I'm very
disappointed in the incompleteness of this story.
It is possible to use both alternative and treatments; it's called complimentary medicine and it's how I chose to treat my disease.
http://rawarrior.com/rheumatoid-arthritis-natural-treatment-beachcomber-art icle/
I'm wondering how we'd ever get a movement stirred up to cure a disease that's just not so bad & can be cured by just taking care of yourself anyway.
Like so many in the forum discussion, I was already eating a "Mediterranean" diet & exercising & living a "pure" or kosher lifestyle when I was disabled by RA. Like so many others, I pushed hard to see whether that could make a difference in RA. But RA is a disease, and it needs to be treated.
Babette Russell
http://community.arthritis.org/forums/Topic4326804-1831-1.aspx
Many of us felt the article gave ill-advised or even dangerous advice, so even though I hate to post something so negative I feel it’s the right thing to do. So here are a dozen or so brief excerpts from the 29 comments, that are critical of the AT article:
“I pretty much bristled at it.”
“the article overlooks the serious and permanent damage RA can do to our bodies.”
“it bothered me too.”
“It just made me mad”
“just stopping meds can be dangerous”
“I too was a bit taken back by the article. Sometimes I think these types of articles do more for promoting denial in newly diagnosed people.”
“is it really wise to have an article like that, I don't think so,”
“I could really see a newly DX person reading that and put off treatment, bad bad story. “
“I would hate to see someone with blood test results , showing severe RA, refusing treatments”
“I think this was irresponsible and a disservice to readers, many of whom struggle on a daily basis.”
“This story is an insult and does a huge disservice to people (who) battle severe RA.”
“I think it is dangerous, insulting and downright irresponsible! “
“how do you sleep at night?”
“I'm really starting to get annoyed with this woman.”
“…how… disgusted I was with the article.”
“It seems all they publish is the happy ending stories”
I'd like to thank you for publishing this article. It shows that non-traditional medical treatment is an option for many with RA. As you can see, there is a lot of misinformation out there which even other RA patients, such as those here on the Arthritis Foundations website, continue to put forth.
One common theme is that the traditional meds are more able to stop damage. Unfortunately, that is not true and has been the subject of many double blind studies or literature reviews published in Pubmed. The damage continues on even the 'big guns'.
Another is that 'trying to eat right' constitutes as making informed dietary choices. For example, while the Mediterranean is healthful for the average person, components in it might be taboo for a specific person with RA. Without a true elimination diet, or comprehensive allergy testing, one might never know that their flares were exacerbated by nightshades, or corn (in just about all processed foods) or whatever.
I like the idea that your focus was an active person who uses exercise to help combat this disease. There are a ton of Pubmed articles on the anti-inflammatory aspects of exercise. And for those who cannot do anything too intense, walking on the beach, or around the block, helps us.
Also, I like the idea that she works on keeping stress to a minimum. Recent genetic research has isolated the genes responsible for our inappropriate stress responses.
So, thank you very much on opening lines of communication between those who use alternative medicine and those who don't...yet.
Pip
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