Thursday, July 18, 2019
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Let’s Get Real

Lately, I’ve been trying to figure out ways to bring about more awareness about Rheumatoid Arthritis. By awareness, I mean making people aware of the facts surrounding this disease and erasing some misconceptions. So today I want to present a little list of Myths vs. Facts.

Myth: RA is what my grandmother has. Her knees really bother her when it rains.
Fact: This misconception is one of the many reasons those of us fighting for awareness want the A-word taken out of the name. I’m sure her knees do bother her when it rains. Almost everyone is affected by arthritis as they get older. The difference is that osteoarthritis, which is what most of our grandparents deal with, only affects that joint. It comes with age as the cartilage in the joint wears thin. Rheumatoid Arthritis, however, is a systemic disease. It causes extreme fatigue, painful swelling of the synovial lining in joints throughout the body, and significantly raises the risk of heart disease in patients.

Myth: If you’d just exercise, you’d feel so much better.
Fact: This is partly true. The thing that people tend to not understand, though, is that you have to use your joints for almost every exercise. And when you work RA joints that are already inflamed, it worsens the pain, the swelling, and ultimately the damage to the joint. Obviously some methods of exercising, such as yoga and swimming, are easier on joints than things like jogging or weight lifting. But how do you do mountain pose when your ankles won’t support you? How do you drive to the indoor pool when you can’t walk to the car? When it takes everything in me to do a load of dishes or make it onto the porch to watch my kids as they play outside, working out isn’t exactly at the top of my priorities. On the few good days that I get, though, I use a yoga DVD for our PE time. And while it makes me feel better overall, it doesn’t stop the bad days from coming back.

Myth: This person I know has RA and doesn’t let it affect their everyday life.
Fact: There is no such thing as “letting” RA affect your everyday life. It either does or it doesn’t. There are certainly the lucky few out there that have been given an RA diagnosis, prescribed some NSAIDs and maybe a biologic medicine, and continue living their normal life with just some extra fatigue or achiness here and there. But, according to Medscape, the facts are these: Daily living activities are impaired in most individuals with RA. Spontaneous clinical remission is uncommon (approximately 5-10%). After 5 years of disease, approximately 33% of patients are unable to work; after 10 years, approximately half have substantial functional disability. I’ll discuss how RA has affected my everyday life in a future post. For now, suffice it to say that my daily living activities are extremely impaired. And every case of RA is different and varies in severity.

Myth: The new biologic medications that are advertised on TV are miracle drugs.
Fact: They might be miracle drugs. For some people. And for some time. Personally, I have taken both Remicade and Orencia, both of which are TNF-blocking biologic drugs. Neither made the slightest difference in my symptoms. I know of several other RA patients who have been through the whole list: Enbrel, Humira, Simponi, etc, and find one that works for them only for it to stop working after a couple of years. Then the searching and experimenting starts again. All of these have been advertised as being for those with “moderate to severe RA”, yet the commercials show a very inaccurate picture of someone with that degree of pain. I wish they would show someone like me, someone who struggles to pick up her child or limps through the grocery store, hanging onto the shopping cart for dear life after about fifteen minutes. Not because I want people to feel sorry for me or others going through it. I just want those people who are not experiencing it to get a glimpse into the reality of this illness so they might be made aware.

Myth: There’s no need to take all those medications. There are natural ways to treat RA.
Fact: I call BS! I’ve had every “cure” suggested to me from cherry juice to curry to oil from some obscure plant that only grows in Japan. I know that people who suggest these things are trying to be helpful by passing on the latest “all natural cure-all”. But there is a reason we have to pump our bodies full of those heavy duty medications I just mentioned, along with that horrible weekly dose of methotrexate and NSAIDs and heartburn/nausea meds to counteract side-effects and supplements to replace the nutrients the drugs leach from our bodies. It’s because Rheumatoid Arthritis is a very serious disease waging war on the entire body. I wish to God there was a natural remedy. But I know that all I can do is pray that scientists will discover a cure in my lifetime, preferably before the RA has done too much damage to my body. In the meantime, I’ll just fight it with the arsenal currently at my disposal.

If any of you are fighting like a girl against RA, what are some myths you’ve encountered?

Aubrey

This article is intended to convey general educational information and should not be relied upon as a substitute for professional healthcare advice.

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One comment

  1. Yep I have taken Remicade, Prednisone, Oral Gold, Methotrexate, HumiRA, etc since birth off and on. I am currently on no medicines because medicine makes me sicker then I already am. I credit this miracle to Jesus. I am in need of a holistic doctor which I can’t find without them having outrageous expectations and rules.

    Exercise…..right now I don’t have the energy to do much more then walk. I also have an overweight fiancé who right now refuses to work out. My hope is for us to exercise together one day.

    Natural ways…..I agree that the media tries to sell weird stuff but I also disagree that natural doesn’t cure. Eating organic (natural) foods and doing natural things that our human body is made to do helps those with chronic diseases. God gave us our body to take care of it and it also has the ability to heal itself.

    RA and affecting lives….I agree if you say it doesn’t affect your everyday life since diagnosis is a lie. My four diagnosis’s affect my life every day. My biggest headache is my CFS. I long for the day when I can wake up and really wake up. I still have yet to wake up fully without wanting to go back to bed. Typing this now is even a task that’s exhausting. No one understands it unless they really experience it. My parents have always said I am making an excuse for being tired to not do things which sometimes is half true half not.

    So I have learned that eating correctly does wonders for me.

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