One Patient's Positive Perspectives

Posts tagged ‘Musculoskeletal Disorders’

LUPUS FOUNDATION OF AMERICA – A Stronger Voice Fighting Lupus

Brand New LFA Logo and Awareness Slogan

You may know the Lupus Foundation of America, but have you heard about their new rallying cry and awareness campaign launched last week?  The new logo and branding campaign, should help spread lupus awareness, and help people better understand the mystery, complexity and potential severity of lupus.

Watch the video to learn more about the new LFA logo and awareness slogan:

To read more of the following excerpt from the ALA website, click on this link: more…

Help Us Solve the Cruel Mystery™ National Tour

(From LFA Washington, DC) LFA is launching a multi-city education and awareness initiative to engage the public, healthcare providers and those living with the disease in the fight to end lupus. The Help Us Solve the Cruel Mystery™ National Tour will feature a 45-foot bus, equipped with eight interactive exhibits and displays, where visitors can learn about lupus, experience what it is like to live with the disease, and sign a petition to urge Congress to provide more funds for lupus research, education programs, and support services.

Interact with world-renowned lupus experts

The tour includes a patient education program where people with lupus and their families can interact with world-renowned lupus experts to learn more about the disease. In addition, healthcare providers can attend Continuing Medical Education (CME) events on the biology of lupus, organ system effects, diagnosis, and treatment.

more…

Learn more about the ALA lupus awareness bus tour, new education programs, and ways you can get involved in the fight to end lupus, by visiting LFA’s special site, cruelmystery.org.

You can also help like I did, by adding your comments about lupus at Lupus Voices Across America™

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CNS Lupus and a little sneaky confusion

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Disconcerting!

Central nervous system lupus in a word?  Disconcerting!  When life gets busy and demands get stressful, CNS lupus can sneak up on a patient and catch her off guard with its bag full of antics and embarrassing tricks.    Over the last few weeks, my life became a little out of whack as my husband and I maneuvered around his knee injury, inability to drive and eventual knee surgery to remove a large blood clot.  Life and schedules became very non-routine and my CNS lupus quietly whispered to get my attention and said, “howdy.”

After more than a year of Benlysta infusions, my CNS lupus has been quieted and subdued more than at any time I can remember in the past several years.  It has been a relief to have my memory and problem-solving parts of my brain working generally well, and I can count on it more often to remember things that were a struggle before.  Well, lately has been an exception.  Being stressed, doing lots of extra driving, working weird hours, concern about my husband’s injury and surgery, and forgetting my medications a few times all contributed to some symptoms that caught me off guard.

http://www.flickr.com/photos/29233640@N07/5590813799/

Left turn lane to nowhere

One time on the way back to the house, I started into a left turn lane on a busy street that didn’t head anywhere I needed to go.  My kids that were with me asked, “mom, WHAT are you doing?  WHERE are you going?”  There was no saving face because the turning lane went nowhere.  It was all too obvious I was confused.

Several activities were going on at our church because of a 30th anniversary celebration, and my friend and I were preparing to sing a couple of duets for a church service and a formal dinner.  After meeting one evening to practice several pieces in our growing repertoire, we decided which song to sing what night, and scheduled our next practice a few days out.  The next morning, and for several more that followed, I could not remember which songs or even which music books we had decided on.

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practicing ALL our duets in the car

To thoroughly cover my bases, I popped the ALL the background music CDs for several music books into my car, and for a few days sang along with ALL of our duets as I commuted.  It took me several days of singing and hoping in vain that my memory would clear before I called my dear friend and confessed my massive memory lapse.  My friend, so like a sister, loves and understands the hard issues of my lupus, and in her matter of fact directness, refreshed my memory.  This time, I wrote down dates and times next to the names of the songs in the table of contents of the correct music book.

http://www.jerseymikes.com/rewards/

Forgot the card… twice!

Twice recently, I went out to pick up some amazing sub sandwiches from our favorite local lunch spot, Jersey MIke’s Deli.  My husband all but cherishes his Mike’s “frequent buyer” rewards card, and admonished me to remember to use the card when I bought our subs.  Not once, but twice, I forgot to pull out the reward card.  No more than ten minutes passed between taking everyone’s sub order and standing in front of the deli counter, but both times the thought was wiped clean away until later.  When he asked me about it, I was frustrated at forgetting.  Short-term memory issues from CNS Lupus?  Of course!

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Confusing days, names & passwords

The most disturbing issue of all was several instances when I was confused and couldn’t figure out what day it was.  Then, later that day, it bothered me greatly when couldn’t remember my friends’ names or my pharmacy log in name and password.  I even had some moments of difficulty articulating clearly while trying to speak.

Things were subtly getting worse a little at a time, when I was suddenly shaken into action in the middle of happy pleasant busy day by a tidal wave of unexplained deep physical sadness.  This overwhelming emotion was so strong it was like an intruder bursting into the room, and I suddenly felt it physically.  It was an unmistakable sign that my CNS lupus had kicked up into more activity.

This physical “depression” I experience sometimes when my CNS lupus becomes active is a great deal like a sensation of woe that floods over and through me.  It seems totally physical, and is completely detached from my thoughts and feelings.   It is a misfit with where I am at in life and in the middle of an otherwise normal day.  My upbeat brain doesn’t match my suddenly “grieving” body.  It feels like my body is intensely sorrowful, while my inner self is perfectly happy and at ease, even cheerful or joy filled.  Over the years I have learned to recognize this urgent organic cry from my brain and body for help.

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diagnosing CNS lupus with treatment

I respond by taking a modest burst of steroids and taper off within a couple of days.  If the physical depression returns, I set a priority appointment with my rheumatologist, who usually ups the steroids by injection or a high long taper off prednisone.  Steroids are the big gun that immediately changes everything.  My rheumatologist says it is possible to diagnose CNS lupus by treating it, because of how quickly it responds to prednisone.

Lupus, a lovely chat and a legal luncheon

Meeting someone new with lupus

Yesterday, I met someone new that has lupus.  I had a wonderful chat with her and her son, and thoroughly enjoyed our visit as we sat outside for an hour, enjoying the end of a summer morning at a Starbucks in downtown Phoenix.  I learn something every time I meet another lupus patient, and yesterday was no exception!  The strength and endurance of this lovely woman impressed me deeply, as she shared about the many challenges and changes that lupus has brought into her life over the past five years.  Her son joined in our conversation, and seemed very understanding and supportive.

Amazingly unruffled with multiple autoimmune diseases

It was amazing to me how unruffled she seemed about facing multiple auto-immune diseases, each singly enough to disable her.  With Lupus at the center of her health battles, like so many other women with lupus, she has been unable to work.  Lupus flares and repeated hospitalizations have interrupted her attendance on the job.  My personal health challenges with lupus just seem to pale in comparison!  As I drove to an afternoon employment law seminar, I reflected on my conversation with the truly amazing woman I had just met.

Legal updates on FMLA and ADA

Unfortunately, the too many lupus patients find themselves in a similar situation: unemployed due to their health.  Despite the protections of the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA) the statistics are not very good for many lupus patients who lose their jobs.  Later, as I sat through lunch and listened to a lawyer speak about recent legal updates to FMLA and ADA, my mind wandered back to the woman at Starbucks, and the others I know like her who became unemployed when lupus got in the way.

Reminded again to be grateful!

I am reminded once again to be extremely grateful and thankful for my job.  I have been able to stay in my career, and have immense amounts of encouragement from others.  The attorneys and support staff I work with, and my husband, family and closest friends all seem to stand by cheering me on.  Without them, my story could have come out very differently.  I just wish every lupus patient could have the blessing of an accommodating employer, and the encouragement to face the changing faces and impacts of lupus.

Lupus arthritis, and how to shake my hand

When we meet don’t hurt me!

I am so glad to greet you,
and want to know your name!
But, when we meet, don’t hurt me.
My joints might be inflamed!

Please do extend your hand,
in a solid gentle way,
but just don’t squeeze too hard,
or I will ache throughout the day.

If you forget and squeeze too firmly,
remembered you will be!
And the next time that we meet,
I won’t shake so willingly.

I’ll remember my last wince
while gazing at your grin
And pull my hand away from you
to shelter it from pain.

Remember I might be sore!

So you can shake my hand,
but remember I might be sore
and I’ll let you shake it again,
and trust you so much more.

I won’t shrink back or shudder
at the thought of your hello,
and I’ll gladly shake your hand
each time we come and go.

Lupus Adventurer

Copyright June 2012

This poem is dedicated to  one of my newest friends in Arizona who is just learning about lupus in efforts to help the Lupus Foundation of America, in its new outreach to Arizona lupus patients, their families and others affected by this auto-immune disease.

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!

Understanding Lupus Fact #5 – Genetics and what can trigger lupus

Understanding Lupus: Some people have genes that allow them to develop lupus.

Research has shown that there are a specific group of genes that are common in patients with lupus.  In men, it may take a larger number of  these genes to develop lupus than are required for women to develop the disease. There is no specific gene that alone causes a person to develop lupus.  However, genetics do play a part in a person developing lupus.

Identical twins…

In identical twins, only one may have lupus while the other twin never develops it.  If these twins with identical genes do not both develop lupus, then it is obvious that something beside genes is also involved in the development of lupus.  There are other environmental factors, or “triggers” that are also required.

Some environmental factors that may trigger lupus in people with genes that make them susceptible  to lupus include:

  • infections
  • ultraviolet light
  • extreme stress
  • certain prescription drugs
  • certain hormones

If family members have lupus, or another autoimmune disease, this tends to increase the likelihood that other members of their family will develop lupus or another autoimmune illness.  Lupus is not specifically inherited, but the tendency to have autoimmune disease is.

Only one may have lupus

My maternal grandmother had rheumatoid arthritis (RA), took steroids and quinine all her life for it, and lost her sight late in life.  From the time of my early childhood, doctors tested me over and over for rheumatoid arthritis because of my grandmother’s RA, but never found a reason for my joint stiffness, pain and inflammation until they determined that I had lupus.

While I may not have directly inherited lupus from my grandmother, I did inherit the genetic susceptibility to autoimmune disease that predisposed me to developing lupus.

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