Lupus Fact & Blog of the Day No.14 – Lupus Survival Guide & Toning Up

Lupus Awareness Blog No. 14 – Lupus Survival Guide

Today’s lupus blogger, Marisa, is no novice to writing and is an often published author of magazine articles.  Marisa has a great blog  about writing at http://wordslingergal.com.  About a year ago, she published a blog post about her lupus, 11 Years Later Its Time To Tell the Entire Story.  Marisa now has just launched a new blog about lupus, www.LupusSurvivalGuide.com.

Marisa is such an excellent writer, I see no reason for me to describe her blogs, since she is such a skilled writing professional.  Instead, her own articulate words can speak for themselves:

Selected blog excerpts by Marisa:

“Wordslingergal used to be a site where I would post my published newspaper and magazine articles, but has evolved through the years. Today it is a website/blog that will be used to reach out to other writers or those who want to become a writer. My goal is to have interesting articles, links, and guest bloggers that discuss a variety of writing topics.”

“Although I had always enjoyed writing, I never thought it would become my career. In fact, I went to college for nursing! But, life happened – illness happened – and I was forced to stay in bed for a long period of time. It was during that quiet time when an old flame was reignited… my love for writing.”

“What began as volunteer writing for a South Florida newspaper eventually turned into a position as head writer and assistant editor. One published article turned into 250 over time, and I have been featured in Christianity Today, The Good News, Eating Well Magazine, WebMD, MSNBC, and many more as both the writer and the interviewee on several occasions.”

“When I began writing, I attended several writing conferences – something I would absolutely recommend to every writer. It was during those conferences that I learned about freelance magazine writing, book writing, book proposals and business writing. I began to branch out and write freelance web content, resumes, medical writing, book proposals, financial and magazine writing.  I have had Lupus for 12 years and consider myself a survivor and thriver.”

A  little more about Marisa

Marisa wants her new lupus blog to educate people about the disease and offer recent lupus news and breakthroughs.  She also has been an official support group leader for the Lupus Foundation of America, South East Florida Chapter, and served as a member on their Board of Directors.

Today, Marisa works from her New York home as a freelance journalist and editor, as her health allows, and she speaks publicly about Lupus.  Her new book about lupus is available through online book retailers and her blog.

Lupus Truth No. 14 – Lupus and Daily Exercise

Coping with Lupus

Coping with Lupus: People with lupus are usually encouraged to engage in appropriate daily exercise to keep up muscle and bone strength.

Exercise is not intuitive for those with auto-immune health challenges like lupus, rheumatoid arthritis or fibromyalgia.

Waking up each morning with joint stiffness and pain, the first thought on my mind is definitely NOT exercise!  In fact, my rheumatologist challenged me a couple of visits ago to step up my exercise routine to a daily schedule.  Perhaps my weight hitting a second all time high had something to do with his insistence.

Although I have not met the daily goal to get on the bike, I am much more aware and make sure I am exercising mildly almost every day.

Get some exercise daily!

Unfortunately, bicycling waited for a couple of months after I slipped and had a major hip sprain.  My absentminded (Lupus!) brain forgot I had just mopped up a spill and walked right on top of it – and I went flying.  During the fall, it felt like my gyrating hip was trying to break, and the strain left every muscle in that hip and thigh sore for weeks.

The great news was that my hip was not broken, and that neither hip showed osteoporosis nor more than a hit of osteoarthritis, even after decades of taking steroids!  My physician sent me off to the chiropractor to “tune up” my wrenched spine and hip, and I have seen him weekly since the fall.  Slowly, I started moving better again, even after slipping on a dryer fabric softener sheet with the strained leg forward sliding into the splits (ouch!) and once more on my wet patio.

My milder yoga routines kept up, along with paying more attention to eating a lean healthy diet.  I have dropped 14 pounds in the past couple of months by exercising a little more and sticking with the guidance of a well-known weight loss program.  Now, my healing hip is ready for cycling again and maybe this will “kick-start” phase two of my weight loss – shape up project.

It took a while to get all this extra weight on, and it surely will take more time to get it off.  It was a sad realization that I was elated because I had finally lost enough weight to get back into my FAT clothes!  The goal is stills somewhere pretty far down the road.

To learn more about the truths of lupus and exercise, please read my post from  May 14, 2012.

Plan to POP — Put on Purple — for Lupus May 17th

Remember to pair up your purple socks to get ready to “POP” — Put on Purple — for Lupus this coming Friday, May 17th!

Coping with Lupus: Fact #18 – Lupus increases osteoporosis risk – Put on Purple – Today!

Lupus and Bone Loss

Coping with Lupus: Women with lupus are at increased risk for loss of bone mass (osteoporosis) and are nearly five times more likely to experience a fracture.  Everyone with lupus should become knowledgeable about osteoporosis.  We all need either a treatment plan that reduces bone loss risk, or to treat and possibly reverse  bone loss.  For years, my bone density remained above the normal range, but after many years of steroid treatments for lupus, my bones were finally losing density and needed more attention.

Got milk?

My diet has always included large amounts of natural calcium, including milk, yogurt, cottage cheese, cheese and many fresh vegetables that provide rich sources of calcium.  Even though my bone density has been good over the years, usually 100% to 110% of the normal range, my rheumatologist has insisted that I include bone-supporting supplements of calcium and vitamin D in my daily routine.  He followed me with periodic bone density tests as medically responsible due to my continued dependence upon daily low dose steroids as part of my overall lupus treatment plan.

Actonel

Declining bone density and osteoporosis medication – a rare bad reaction!

However, at my first signs of declining bone density exam results, dropping several percent below normal, my rheumatologist prescribed Actonel, in a once-a-month dose osteoporosis medication.  Unfortunately, I had an extremely bad experience with this drug!  After taking my first dose, within just a few hours I felt the onset of the most severe deep skeletal bone pain I have ever felt in my life (or even imagined in my worst nightmares.)  Every single bone in my body hurt, and even the entire length of every rib, by skull and my jaw hurt intensely.  There was no escaping or distracting myself from the overwhelming reaction I experienced to the osteoporosis drug.

The debilitating and excruciating bone pain lasted for several days, and I lost a whole week of work remaining in bed on pain medications, just to cope with the drug reaction to Actonel.  The patient drug information sheet includes a warning about the possible rare side effect I experienced.  My doctor immediately took me off the offending osteoporosis drug.  Even if my doctor had not advised me to stop taking Actonel, I would have made that decision all on my own!  That was clearly a “no brainer!”

Too “chicken” to try again!

Negotiated non-compliance with an alternative

A couple of months later, my doctor prescribed Boniva, a similar drug.  After filling the prescription, I just refused to take it.  I just didn’t have the heart to try again.  I looked at the unopened package over and over, picked it up and read the same warnings on the package that were on the Actonel package, and even once broke the blister and held the pill trying to convince myself to take it.  I just simply “chickened out” and tucked the pill back into the blister pack and placed it back on my medicine shelf. (It sat there for two more years, not taken.)

Stubborn, gutless wonder…

After my first experience with this class of drug, I could not muster up the courage to try Boniva.  Despite my rheumatologist’s protests, I refused to take any another similar drug.  This was one of my most notable times of being a completely non-compliant patient, when I was absolutely unwilling to try something my doctor prescribed.

So, instead I negotiated insistently with my doctor.   I proposed that, if after six months of increased weight-bearing exercise and increased calcium and vitamin D supplements my next bone density exam did not return to the normal range, then, and only then I would give another osteoporosis drug a try.  He agreed.  If my next bone density exam improved to a normal range, he would let me forgo any new osteoporosis drugs.

Calcium with Vitamin D

Weight-bearing Exercise and Supplements

My increased efforts to build my bone strength were ultimately successful, and so far, I have succeeded in keeping my bone density at normal or near normal levels without adding osteoporosis medications.  A couple of years after the Actonel experience, I finally threw the unused Boniva prescription away.  Exercise, a calcium rich diet and calcium supplements that include vitamin D are still critical.  I hope that this approach will always be adequate, but if not, I must keep my promise to my rheumatologist, and will be willing try another drug to preserve my bone health and reduce fracture risks.

For many lupus patients, diet and supplements are inadequate to prevent declining bone density, but thankfully, the extremely negative reaction to osteoporosis medications that I experienced is extremely rare, and is not the norm.  Most patients should definitely try taking the drugs their doctors recommend to treat their osteoporosis or reduce risk of potential bone loss.

Learn about Bone Loss

A good place to start for every lupus patient is to read more about lupus and bone loss.  Here are some very reliable sources of patient information about osteoporosis and Lupus:

What People With Lupus Need to Know About Osteoporosis, by NIH

Bye-Bye, Bone Loss, by Amy Paturel, M.S., M.P.H.

Osteoporosis, by LFA

Lupus and Osteoporosis, by LFA

Don’t Forget to Put on Purple Today!!

Don’t Forget to Put on Purple Today Before you Leave the House!

The next thing to do is to talk to your rheumatologist about your bone loss risks.  You may have normal bone density and might be dodging the bone loss bullet, but perhaps  you are experiencing progressive bone loss.  You and your doctor should discuss your status and the health of your bones, and decide if a treatment plan for osteoporosis is right for you.  You rheumatologist will probably recommend a bone density scan.  The scan is painless and takes just a few minutes in the doctor’s office or radiology lab.

Remember:  Whatever else you do to protect your bones, just don’t forget to do regular weight-bearing exercise!