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Monday, April 2, 2012

The Etiquette of RA

A coworker of my husband's lives with severe rheumatoid arthritis. She was recently diagnosed with stage III lymphoma. She blames Humira; I am on weekly shots of the stuff. She has taken it upon herself to council me on my current drug cocktail. Now I like cocktails, my tastes typically run to the drier side. However my drug cocktail is less about the taste, and more about the bottom line, which is for me, experiencing my life to the fullest


And that is none of her business. Nor is it her business to inform me her viewpoint of what works, what doesn't, and if the martini offered is poison or not. Sure I have a vested interest in deciding if the ultimate payoff is worth the risk, do the drugs add quality of life while subtracting quantity? It's a hell of an equation, one without clear cut answers.


 Research implies much regarding the mechanisms of TNF-blockers like Humira. The same is true of DMARD's and our good old friend, Prednisone (ugh). As a patient, you must sift through medical material with your eyes wide open, remembering that correlation does not imply causation, especially in the cases of biologics, where the impact of TNF isn't fully understood in the body. Without getting into the nitty gritty, my own belief is that the association found with these biologic shots and lymphoma, stems from underlying inflammatory disease. Inflammation can lead to a host of issues; in RA, this also includes rheumatoid heart disease.  Despite the fact I am on Humira, I am probably more likely to die of an RA-related cardiac event than lymphoma. Again, this is just my opinion on the matter. Kelly Young's RA Warrior website does a great job examining RA from a patient-advocate's standpoint. I highly encourage you to check it out.

This brings me to another point. Do not ever tell a patient to switch doctors. It is not your job to get involved and "save" them if they are content; that is, in a well-established and beneficial relationship with their physician. I've been receiving not only notes on medication from the above-mentioned savior, but also a listing of doctors who are "better" than mine. I'm fine with my doctor. He listens to me, answers my questions thoughtfully, and advises me when appropriate. Just because this woman doesn't like my doctor doesn't mean I will have a poor experience with the man. I trust him implicitly, and that's saying a lot considering my inquisitive nature.

Cocktail ingredients
 Being sick is both a science and an art form. You must balance out the mechanisms of human biology with pharmacology and your daily quality of life. For many individuals, the medications, blood tests, and doctor's visits become second nature with time. That doesn't mean these patients aren't vigilant; as it is prudent to stay on top of new medical research.

Communication is part of the balance that stumps others. Discussing options with your doctor, being clear and direct about what you need from receptionists or lab technicians takes practice.

What else requires work? Practicing patient-to-patient etiquette, and handling those who were just diagnosed with kid gloves. Don't over-share if someone doesn't ask. The newly diagnosed may be hyper-sensitive, attempting to establish balance in a world turned upside down by illness.

 Don't get me wrong, I understand my husband's coworker is trying to make sense of her situation. By trying to "help" she is underestimating my knowledge of our illness, and putting my diagnosis on the dissection table for everyone to see (even Mr. Sunshine's boss inquired of my well-being after hearing her lymphoma/Humira story-NOT HIS BUSINESS EITHER). Despite the fact my husband mentions that I've done my homework, and made choices for myself at this moment that are working, this woman still has a negative comeback for everything he says. I finally just asked him to be my filter; let her get it off her chest, and leave me out of her equation. 

 I suppose in the end I am concerned for the spread of her strong (and possibly wrong) convictions regarding rheumatoid arthritis and TNF blockers. But I have enough common sense not to tackle that issue. I wish her well, I pray her cancer goes into remission. It would be nice to not have to worry about our bodies malfunctioning in such fantastic ways, but until that happens, we need to rely on one another in the strongest, most compassionate, and thoughtful ways possible. Even if that means biting your tongue.

2 comments:

  1. I agree with you.

    I have educated myself and done my research and I have chosen what my medications will be (with my Rheumatologist).

    It may not be what someone else would choose - but I've made the best decision for me. And if someone else were to question my decision and imply that I didn't know what I was doing or making the wrong choices - I would find that very offensive and inappropriate. This is my RA, no one else's.

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  2. Melissa,
    I appreciate you reading and responding. You've summed my feeling up succinctly; MYOB!
    Thankfully I haven't heard as much recently, my hubby has a good filter. :)
    Hope your days have been good ones!
    Sunshine

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