Self Advocacy

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Self-Advocacy With a Kick-Wolf Attitude

Lupus is creative, multi-faceted, industrious and resourceful, just as we must be, to hold our own and stay ahead of this artful dodger. We lupies can be pretty enterprising ourselves, with our own hardwon, handcrafted survival skills. We’re studying our symptoms, doing our own research and making carefully considered decisions as to what’s best for us. That’s self-advocacy – standing up for our own lives.

We need allies and mentors, because shared knowledge broadens our education and deepens our understanding. When we, our doctors and nurses communicate clearly and work in partnership, every aspect of our treatment is enhanced. To learn lupus from the inside out, they need our input every bit as much as we need theirs. No matter how well they may know our bodies, they’re only visiting – we’ve got to live here, even if the roof caves in.

Some doctors understand we’re partners in this process and worthy of respect. Others encourage us to be passive patients. They’d rather interpret our symptoms and direct our treatment without a peep from us. When we try to take on an active role, they’re apt to respond with condescension, disdain or even anger. We shouldn’t scuttle meekly back into our shells, repeating the age-old mantra, "the doctor knows best." Arrogance is their problem – lupus is ours and retreat gets us nowhere.

If experts look down their noses at us, we should remind them that we aren’t crashtest dummies. We have the right to be treated with respect and compassion. Medical professionals may often be disguised as godlike figures but they’re still human. Trying to walk on water will only give them two earfuls of wet, just like anybody else. A doctor not godly but good, will be enough of an angel to discuss all aspects of our treatment, in advance and throughout the process.

With rights come responsibilities, on both sides. Our obligations are as imperative as our doctors’ and nurses’ – they can’t do a thing without us. Long ago, a lupie wrote, "My doctor never tells me anything. I guess if God wants me to know, he’ll tell my doctor to tell me." She’d better pray that doctor’s not an atheist. If we believe we’re endowed with free will and seeking spirits, then maybe we should consider exercising them, in honor of the gifts and the giver.

At the onset of any treatment, while still right side up, fully dressed and on equal footing, we can question new doctors. We should inquire about their backgrounds in, knowledge of and experience with our illness. Ask if they’ve been trained and certified in treatment of chronic pain. In discussing these points, we’ll learn if they’re up to date on current research and treatments. Doctors routinely interview prospective patients; it's in our own best interests to make it mutual.

If we have lupus, we’ve already figured out that this is not a perfect world. Medical records can be incorrect or lost, medical mistakes sometimes happen and reasonable people can remember events very differently. To be sure, we can keep our own records. Right after every medical appointment or procedure, we can enter important information while it’s fresh in our minds. With Ol’ Wolfie underfoot, life is tricky enough, without increasing the element of chance.

Keeping a notebook or journal can fine-tune our medical treatment and our own understanding of our lupus. We can list our symptoms including type, location, duration and times of pain. When symptoms surge, we can note our local weather conditions including temperature, humidity and pollen count. Writing down our questions or suggestions, then going over them with our doctors, can individualize our treatment even more.

We should record all our blood tests, who drew them, where, when and why, with the results. Track every injection, what it’s for and any reactions. It’s important to record all x-rays, including dental, bone scans and MRIs. We should list our allergies, diets and any restrictions. We should include all prescription and non-prescription medications, vitamins and homeopathics we use. Many medications, foods, herbs and supplements can cause dangerous or potentially deadly effects when used together. That makes this information critical.

Our doctors should let us read our records, add our notes and amend any errors we find. In America, they must, by law. They should give us complete copies and update their records and ours, at office visits. They must give us all information on our medications before prescribing them – the good, the bad and the iffy. We must know exact dosages and number of doses prescribed before filling the prescriptions, then read labels and count pills. Request the drug package insert, read it and save it too.

Finding the best local chemist/pharmacist is as necessary as locating a good doctor. Whether physicians or chemists, good ones will explain all about our medications. They’ll relate their effects and side effects, their interactions with our diets and drug or food allergies or other medicines. We must always be told of any potential alcohol, herb, supplement or homeopathic interactions and if any of our medications are sun-sensitive, since that can stimulate our lupus.

Our doctors' and pharmacists' names, phone numbers and addresses can be kept in a specially labeled portable notebook. We can add a description of our condition, with all related information. If it’s kept in a labeled, see-through, waterproof pouch and slipped in our purse, briefcase or pocket, we’ll be prepared in any medical situation. Medical alert bracelets or medallions, with pertinent information inscribed can be very valuable in an emergency.

There is considerable evidence connecting lupus to heredity and many of us have relatives with lupus or other autoimmune diseases. Smart doctors want to know this. It isn’t always possible to track family history but if it’s there, it’s another link in the chain we knit to tie the wolf down. Even without such background, our own research might connect some of the dots. However, international studies prove genetics are still less influential than environmental factors.

Here, at BNB, we’re digging through the data and learning how our lupus reacts to our habitat. We’re learning how our air and water quality, our medications, diets, household products and so much more, can hurt or help our health. Most researchers agree environmental factors pack a bigger wallop than genetics in autoimmune diseases, cancer and a host of illnesses. It’s time humanity cleaned up its act, instead of sweeping it under a carpet of landfills.

Dr. Graham is the head of the St. Lupus Trust. http://www.lupus.org.uk/home.html in England. In the digest of Lupus: Your First 100 Questions http://www.lupus.org.uk/FAQ.html Dr describes childhood food allergies, severe growing pains and recurring teenage migraines as signs of lupus. If we’ve had any of these experiences, they should be detailed in our notebooks or journals.

It could be a plus to hire a doctor affiliated with a major medical center, if it and the physician have good reputations and clean records. The oversight and peer pressure may provide motivation to keep up with advances. Any doctor can claim to be a "specialist" but some certificates come with weekend resort seminars so ask questions and check them out. A wall of pretty paper doesn’t necessarily mean a doctor is well trained and properly certified. Remember the Wizard of Oz!

We can create interactive medical relationships, as equal participants. When we advocate for proper medical care, the results can change our lives, positively and permanently. Those who survive best are those who are willing to be active rather than passive. It’s important to remember that:

1) Many of us lead long, productive lives, many years after the onset of lupus. 2) When we focus on what we CAN do, rather than what we can't, we discover new options, recreate old ones in new ways and expand our panorama of possibilities. 3) In the company of friends who share our challenges and by our encouragement of each other, we are nurtured and grow stronger in spirit. 4) We need not be overcome by physical challenge; yes, we have lupus but IT does not have us!

Websites Worth Watching

* For a wonderfully comfy learning experience, drop into The Lupie Bin, a true labor of love by , a very dedicated and dear lupie. Visiting this site is like dropping in on an old friend and catching up on family news. Among TLB’s many and varied pages, you’ll find the "What’s New With Lupus" pages, a page in Spanish, with links and loads of lupie stories to read. You can bookmark The Lupie Bin or add it to your Favorites file, to keep up with all ’s updates and additions. http://members.aol.com/lupiebin/index.htm

* Our friend, Barry, has created a site that is informative, surprising and moving. Barry’s lupus began in childhood and he invites us to follow his complex journey into adulthood. As a lifelong lupie, I find his odyssey to be straight-forward and often jolting, with no punches pulled. He’s utilized his adventures with the wolf wisely and Barry’s Lupus Site is almost as multi-faceted as the man himself. This is a very interesting and absorbing website, well worth a thorough exploration and a great site to save and share. http://www.barryd.com/

* LUpus Patients Understanding & Support is an exceptional research resource, with information on lupus and related syndromes. lind, the webmaster and spirit behind this site, has organized encyclopedic documentation, with most contributed by doctors and professors. Because of this site’s long affiliation with the St. Hospital Lupus Unit, much of their research is published here. The message board forums include, Diagnosis, Symptoms, Medication and Therapy, Emotional/Psychological and a Teens with Lupus board, for kids and their families..This is an essential site, well worth saving. http://www.infotech.demon.co.uk/

Shar Phoenix

Shar_bnb@...

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