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!

Lupus and getting back into exercise

One in a string of mornings

This morning was one in a string of mornings when I have renewed my exercise routine in earnest.  It is so easy to forget how refreshing exercise can be when I wake up feeling stiff, aching and sore.  It is just simply counter intuitive to exercise when I hurt!  Once again, my poor memory recalls how much better I feel after just a few minutes of workout.

At the moment, I am slightly sweaty and headed for the shower.  But, I feel better than when I got up!  My breathing is deeper, my pain levels and stiffness are less, joint inflammation is down, and my endorphins are on the rise, pulling up my mood after them.

Increasing exercise to 30 minutes daily

Just a few weeks ago, my rheumatologist asked me how much exercise I was getting, and in honesty I had to admit it was not enough.  I have slipped lately and skipped exercise go too many mornings, and cut my workout time short on most of the days when I do exercise.  Letting myself get caught up in the hurry of last-minute morning preparations, lately my time planning and prioritizing to leave time for this important health priority has been poor.

As we spoke in more detail, my doctor concluded that the 15 to 20 minutes I have spent on my stationary bike a couple of times each week, with only 5 to 10 minutes of gentle yoga some of the other days, was insufficient.  He challenged (or perhaps ordered) me to slowly increase exercise to 30 minutes every day

My response as an obedient soldier in the battle against my lupus? “Yes, Sir!”

My exercise goal due date!

So, the plan is to build my daily exercise time back up by a couple of minutes more each week over three months, and kick up my exercise program a notch or two.  So, that is what I have been up to each morning.

Okay, I have missed a few days since my last appointment, but I am definitely increasing my compliance and doing exercise most days now.  I am up to about 22 minutes and hope reach 25 minutes soon — by the end of October.

In due time the weight will come off, too

My next milestone will be 30 minutes daily by the time of my next doctor visit at the end of November. Working back up slowly is joint and tendon friendly, and helps prevent injury or flare of my lupus arthritis from over exertion.

I haven’t lost much weight yet, my secondary goal, but I have faith that in due time that will come, too (or would that be “go?”)

They say its takes 21 days to make a new habit, and I now am well on my way back to habitual exercise.

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!

Coping with Lupus: Fact #14 – Balanced Exercise and Rest Maintains Strength

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!

My natural inclination is a long hot tub bath or jacuzzi soak to wrap warm comfort around  aching joints, or perhaps sipping coffee in bed while waiting for analgesic and morning prednisone medications to “kick in.”

Are you kidding?

Exercise?  Are you kidding?

Yes, our doctors all tell us (and everyone without auto-immune disease, too) to exercise!  Why is the idea so repugnant to us?  Simply because we hurt!  The idea of moving and getting up to shake up painful joints is simply counter-intuitive.  We can’t imagine that when moving hurts, doing more of it will make us hurt less.  But, the truth is that moving gently and getting some mild exercise WILL help manage and relieve pain.  Trust me, believe your doctor, and if you are not getting any or enough gentle exercise, I urge you to consider starting.

With a membership in a health club, I could swim in an indoor pool — it was invigorating!  Some days, I work through some simple yoga exercises that help stimulate my deep breathing and encourage circulation in joints, tendons and cartilage using gentle controlled movement and balance — it is refreshing!  Other days, I get on my bike, with its rear wheel nestled in its indoor fluid trainer stand (a normal exercise bicycle works well, too) and spin for as few as ten or as many as 30 minutes – it is strength-building!

What about when I hurt?

What about the bad days?

On days I hurt the worst, I do just a few minutes of the simplest yoga moves or spin on the bike for no more than 10 minutes.  The goal is just to stir up a little circulation and get my joints in motion, and to stir up a little adrenaline to get me feeling like moving.  Almost always, the gentle movement results in a lowering of my perceived level of pain, and puts my body into a more energetic state.

With a little more adrenaline flowing, and a natural rise in body endorphin levels, my ability to handle the pain increases, and my perception of the pain decreases.  It’s just the biology of movement, nothing more.  This is the effect of exercise that is so counter-intuitive to the pain.  You don’t naturally think it will happen when you feel like stilling still, because every motion of your joints hurts.

Balance exercise and rest!

Balancing exercise and rest – remember moderation!

Take care to balance exercise with rest or when you hurt.  Our doctors rightly tell us not to overdo, or to move in ways that cause more pain.  The right amount of exercise, done with moderation and restraint, should help the pain decrease almost immediately when you start moving.  Increasing pain means it is time to stop the exercise.  Caution to take things slowly is always first when thinking about exercise.

It may take a while to build up to enough exercise to get an aerobic effect.  For me, the pain drastically reduces when I reach the aerobic point in my routine.  My breathing deepens, my strength suddenly increases and my pain reduces.  I first learned to find the aerobic point when I went through physical therapy for a damaged shoulder and rotator cuff.

Approaching and crossing aerobic point

Magic of crossing the aerobic point

The therapists used computerized equipment that measured the movements and changes in my strength levels during the routines.  They would point out the moment when the computer registered the rise in my strength, and I could associate it as a point when I experienced a drop in pain.  The bursts of strength would occur several times during the therapy routines, and each time I would feel a little stronger and move more easily.

I sense a response similar to the physical therapy with gentle sustained exercise.  My first sense of the change is usually about 12 to 17 minutes into my cycling.  After that, I feel like going a little faster, and immediately feel a little more energetic.  I usually try to cycle long enough to reach that first point, and push beyond it a little.

Just do it!

Building up, slowly

If I am having a string of days or weeks of quieter lupus, I can build up to about 30 minutes of exercise, never adding more than a minute each day.  Some days, if I am hurting a lot, I slowly cycle for only about 5 – 10 minutes, never pushing speed to a point where pain rises.  Even moving very slowly helps a little!  I cannot remember a time when I didn’t feel at least slightly better after exercise than I did before it.

Try it.  Really!

Lupus, and important video Twenty-three and a Half Hours

The farthest thing from my mind

Sitting in bed for the sixth day with a bad case of bronchitis, the most remote thought in my mind was getting up to exercise for my health and lupus.  Scanning through my emails on my Nook tablet, I started reading the latest newsletter from Arthritis Health in Scottsdale, Arizona, and was challenged to check out an intriguing You-Tube video,  23 and 1/2 Hours.

The  rheumatology newsletter prompted:

23 and 1/2 Hours

“There is no question!”

“We highly recommend you watch the video “23 1/2 hours” on You-Tube.  It is a short animation with some interesting information on the tremendous benefits of exercise.  It will be the best 9 minutes you will spend . . .  except of course if you are exercising!”

The caption beneath this interesting short You-Tube video describes the subject and speaker:

“A Doctor-Professor answers the old question ‘What is the single best thing we can do for our health’ in a completely new way.  Dr. Mike Evans is founder of the Health Design Lab at the Li Ka Shing Knowledge Institute, an Associate Professor of Family Medicine and Public Health at the University of Toronto, and a staff physician at St. Michael’s Hospital.”

Check it out! I did.

I enjoyed watching this animated fast-moving movie.  The hand drawn cartoon illustrations and understandable way Dr. Evans explains the benefits of are easy to follow, entertaining and compelling.  This was a worthwhile use of a mere 9 minutes of my day, that would be otherwise spent reading e-mails and surfing the net!

23 and 1/2 Hours

Lupus and Wii Yoga Adventures

Wii Adventure

Ever since my daughter and son-in-law moved in with us a few weeks ago, I have been meaning to check out the Wii that they brought with them.  My daughter has been talking for months about Wii Yoga, while at the same time I had begun doing traditional Yoga with our cable TV on-demand classes and a beginning Yoga DVD.

The addition of Yoga to my spinning and exercise routines has helped me take several inches off my waist and hips, while I have lost over 20 pounds in the last six months.

Today, it was time to be introduced to Wii Yoga!

First, I created a Mii character, picking a face, skin-tone, eyes, eyebrows and mouth to go with a hairdo that seemed to best represent me.  I dressed my Mii avatar in my favorite purple color, and began the training and workout routine.

I was surprised to find out that the Wii Fit platform is used to measure weight, balance and even uses height data to help calculate body mass index.  My BMI was 27, and my weight fell into the “overweight” category.  However, I have no intent of getting my weight down to the 115 pounds the program describes as “normal” for my height and build.  I will be happy to lose 5 more pounds and weigh in somewhere around 140 to 145 pounds.  Much below 135, I start feeling very fatigued and looking worn out and tired.

Wii introduction

After weighing as much as 172 for over a year, I am very pleased to be back down to 148 pounds.  So, when the Wii setup program wanted to know my weight loss goal, 5 pounds over the next two months seemed just about right.

The Wii introduction included a measuring session, virtual tight-rope walking, kung fu, snow-ball throwing and Yoga.  All the while, I was cheered on and encouraged by my kids and we had a good time.