Lupus fatigue midst the hope that springs eternal

Hope midst lupus flare

Hope springs eternal, and so it must be for me with my lupus.  Over the past few weeks, I struggled daily with overwhelming fatigue and bone-tired exhaustion from a long, low-grade lupus flare.  Discoid lupus rashes have popped up on my scalp, fingers and expanded in size and aggravation where they already were stubbornly persisting.  Mouth and nose ulcers, and lupus rashes in some very unusual places, such as the opening of my ears have emerged anew.

My job has suffered, while many days  I was only able to work half-days and was struggling to fulfill work responsibilities.  It has been a challenge to feel hopeful in the midst of such weariness.

Hope is still there

However, hope is still there, deep down, flowing inside me through a place far below the surface of the flare, ever-present and encouraging.  Hope.

Hope that tomorrow will be better, that increased steroids and today’s Benlysta infusion will shut down my flare, and that I will do better in my work again soon.  I must persist in my hope that I will be able to better meet the needs of my family again, that I will feel like cleaning house, maybe even as soon as tomorrow.  I have abiding faith and hope that God will enable me to get my eyes off of myself again to look outward instead of focusing inward so much, as I unfortunately have been doing of late.

I am convinced that hope and faith do not look down, backward or inward, but rather upward, forward, and outward.

Hope looks upward, forward, outward

Hope depends upon faith.  Faith in someone or something bigger, stronger, wiser, more powerful than myself.  There is no question now that this someone on which to direct my faith is not me.  Hope comes from faith, and the ability to relinquish and invest my trust into that one I have faith in.  My ultimate source of all hope is  the Lord, for He alone is greater than my finite mind can comprehend — in his vast wisdom, love, mercy, power, strength and so much more.

I can trust Him, and I can trust that these things that He permits (not causes) to come into my life because of lupus, such as this month’s weariness, will not always be the way they are today.

Infusion and hope

So, I hope.  I sit here at the infusion center with Benlysta flowing into my veins, and hope.

My flare will ebb, my rashes will be relieved, my strength will return, my medications will work, and I will be better tomorrow than I am today.  I will choose to have faith, to trust, to have hope and look up, not down.  From deep within me where God himself has graciously touched my heart, I know joy welling up and arising through my weariness.

The joy of the Lord is my strength, and my joy will be greater than the flare and weariness of today.  Today I choose joy, not because of how I feel or because of fair weather, but because of the One in whom I trust for tomorrow.

Choose hope. Tomorrow the sun shines!

All day a fierce late winter storm blew through Arizona.  I traveled down the freeway to the hospital in a driving afternoon rain, with windshield wipers slapping back and forth in a sloppy rhythm.  The downpour drenched my clothes in the mere 30 steps from my car to the hospital front doors.  The nurse greeted me with a warm welcoming hug, but I gave a decidedly damp one in return.

Although it rains, and my joints hurt and I am tired, I still have hope and believe.  Tomorrow, the sun shines!

Today, in my lupus flare, weariness and pain, I choose to rejoice.  I choose hope.  I choose joy.

Post holiday care for a major lupus flare

Happy birthday, sweetheart!

Awaking on my birthday the morning after Christmas, my husband was plying me to enter the morning with fresh brewed coffee.  What could be better at 7:00 a.m. than fresh gourmet java?  After greeting me with a sweet good morning kiss and ”Happy Birthday, sweetheart,” he agreed to my groggy suggestion of where he could find the Christmas leftovers to take with him to work for his lunch.

Soon, he had headed out to work while I sipped half of the hot cup of coffee, and after setting down the partly finished cup, I rolled over and snuggled into my pillow to catch a little more sleep.  After all, I was entitled, it was my birthday!  One more hour would be just what the doctor ordered for my groggy grey matter.

Going for the steroids

Five hours later, I stumbled out of bed toward the kitchen, gasping when I saw the clock face on my stove read 12:07.  I had slept until noon!  The only trouble with sleeping in was that I was supposed to have been to work by mid morning, earlier than it was by then.  I stood there for a moment, and was in a deep state of mental cloud with whopping all over lupus symptoms. I was I the middle of a major post-holiday flare of my CNS lupus.  A not so welcome birthday lupus adventure!

Downed meds with more coffee

I went straight for my morning meds and some extra prednisone, downing them with a cup of fresh brewed coffee from my new Keurig coffee maker.  While it might seem like I should have been fully rested after fourteen hours of sleep, I was everything but refreshed.  I felt completely exhausted!

a quick email to my boss

I sat down at my desk and wrote a quick email to my boss explaining the all too clear truth, and set out to quickly recover the rest of my birthday and work day.

Within just over an hour, I arrived at my office but was still stumbling mentally through my responsibilities.  I had brought goodies with me to share with the skeletal group who staffed our office in the days between Christmas and New Years, and they helped me indulge in my favorite triple berry birthday pie and a plate of Christmas sugar cookies.

Except for the three high points: my husband’s good morning kiss, co-worker birthday greetings and berry pie, it proved to be one of my toughest half work days in recent history due to the extreme activity of my lupus, attacking brain, joints, and just about every other part of me.  My evening however ended on a high note, as I arrived home to a message that the kids were bringing home dinner.  We shared a quiet birthday take-out dinner from a local pizzeria with my husband, daughter and son-in-law.

Taking care of lupus flare

Each morning since, my lupus symptoms have been a little lessened, and each day I have dropped the prednisone dose by a couple of milligrams.  It will take a couple of weeks to get back to my normal five milligrams per day maintenance dose.  Although I have ambivalent love/hate for the steroids, there is no choice but to take them when my lupus flares that severely and suddenly.  The only real option is to burst with prednisone to take care of that kind post-holiday lupus flare.

Unfortunately, the extra sleep had not been enough to prevent it, but a timely burst of steroids can shut it down.  I am grateful my doctor prescribes extra prednisone for me to have on hand for quickly controlling flares just like this.

Lupus and the chat between me and my latte

craving a mocha latte

At mid-afternoon I was craving a mocha latte, and set out on my break for the coffee shop on the first floor at work.  In between my office and my intended destination, I ran into a gal from another department who also has lupus. It wasn’t too long and I almost felt like I was having an out-of-body experience.  Who would believe all the stuff that we were talking about, unless they were in the know about lupus?

To the unprepared person, the nonchalant way we discussed the day-to-day issues of lupus as we caught up on the recent condition of each others’ lupus adventures could be a little daunting.  It dawned on me that to the casual listener or passerby, our reality with lupus might seem utterly unbelievable and unreal!

utter fatigue from l upus

First, there was discussion of fatigue and how utterly exhausting my friend was feeling.  Then the encouraging thought that all of us lupus patients feel that way quite often, and it should not be alarming.  Then, a discussion of shared digestive issues  (I know, T.M.I.) that are so utterly disruptive to social life, and yet we have resigned ourselves to accept and live with the imposition of this lupus-caused discomfort and indisposition without warning.

impact of exercise on lupus

Next, we were chatting about exercise and the positive impact it as upon joint pain, circulation, tendon health, emotions, etc.  Followed by a detailed discussion of the narrow exercise options and restrictions we face: no sun, no impact, and the need for slowly working up the duration and rigorousness.  We discussed types of equipment that seem to work, and those that don’t.

medications for lupus

Soon our conversation turned to current medications and treatment plans. The long list of drugs we each rattled off was enough to turn any passing head in concern and amazement.  Scores of medications, this supplement and that, and what the benefits have been from taking them.  We spoke about the results of various anti-inflammatory drugs we have used, and how we reacted to them. Of course, we didn’t leave out the chemo drugs!

doctors are people, too

At one point we compared notes on our rheumatologists and evaluated their bedside and office visit manner, and swapped stories about methods and strategies for achieving the most successful results from our visits with our doctors.  It was comforting to agree that they, too, are just people, and that applying some kindness and people skills in our dealing with them, coupled with frankness was always a good tactic.

talking about lupus with others

Eventually, my fried introduced me to a co-worker that walked up and joined into our conversation.  At first, I was not certain how much she might or might not know about the discussion she had happened upon.  I found myself feeling almost sorry for her, and somewhat obliged to move toward more generic conversation.  Speaking with her about the support of our employer for ADA accommodations for lupus was a good quick transition away from lupus patient chatter to more benign and inclusive workplace gab.

the foreign language of lupus

The arrival of the third person had suddenly made me realize from an almost out-of-body perspective how obscure and perhaps frightening the “foreign language” of lupus patient chat might sound to the uninformed outsider.  We take so much for granted that we have learned to accept about our lupus.  Lupus is not for the faint of heart, that is for sure!

I chuckled to myself about the litany of things I have become used to discussing in my lupus adventures and headed off to find the mocha I had set out for 15 minutes earlier.  Quite a chat between me and my latte!

CNS Lupus and a little sneaky confusion

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.

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.

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.

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!

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.

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 arthritis and a string of things

Arthritis and difficult activities

Some of us lupus patients and those with similar types of inflammatory arthritis find that activities of daily living are sometimes nearly an insurmountable challenge.  Sometimes, with inflammatory arthritis, just doing normal everyday activities of life becomes much more difficult than we would like!  Lupus, psoriatic, rheumatoid, gout or other auto-immune or inflammatory arthritis can affect hands, wrists, elbows, shoulders, hips, knees and feet.  The inflammation and pain can impair normal functions, and can be very frustrating at times.

Thankful for what I can do again.

As I was driving to work this week, I pondered a list of some everyday things that lupus arthritis has affected in my personal life. Somewhat recently, I after ten years off of the NSAID Sulindac due to remission of joint inflammation, I started taking it again.  I was greatly relieved that, when added to my other lupus medications (Benlysta, plaquenil, prednisone) the resumed prescription NSAID relieved most of my arthritis symptoms.  The severity of increasingly painful and disabling arthritis in my hands was greatly reduced.

I have the use of my hands back!  I was thankful as I thought about these simple daily activities that I can do again or at least do better.  Just a couple of months ago these activities were at times excruciating and nearly impossible:

Mornings

holding a hair dryer
clipping fingernails
buttoning clothes
putting on pantyhose
buckling shoes
fastening a necklace or bracelet clasp
opening pill bottles
sealing a zippered sandwich bag
pulling the foil seal off a coffee creamer bottle
opening my favorite thermal Starbucks mug

Out and About and at Work

opening a car door
opening binder rings
using a stapler
opening a new bottle of soda
opening a plastic packet of Taco Bell sauce
carrying a shopping bag
walking through a shopping mall
climbing a flight of stairs
putting a case of soda into a shopping cart
pulling credit cards out of a wallet
opening plastic merchandise packages

Evenings

turning the key in a stiff lock
cutting uncooked meat with a knife
turning on appliance switches
opening a soda can or bottle
turning the knob on my can opener
holding a heavy skillet
stirring stiff cookie dough
pushing down the faucet sprayer button
taking off boots
scrubbing dishes

Weekends or Anytime (some of these I still can’t do)

turning socks right-side out
doing the laundry
changing bed sheets
moping a floor
pulling weeds and grass in the garden
walking up stairs
washing my car
playing my violin

Vacations (these are still on the “no” list)

Walking through amusement parks in the daytime
Roller coasters
Canoeing (part of my past)
Hiking

My choice how to respond

When each of these actions is difficult and painful to do through out my day,  I have a choice how I will respond to the frustration and difficulty of the moment.

Can I make the pain go away in that moment?  No.

Can I by wishing it so, make my joints strong and healthy again?  No way.

Can I make my lupus go into remission, or better yet go away?  Certainly not!

However, I can adjust and do things in new ways, slow down, pace myself, and at times humble myself to ask others to help me with what I cannot do myself.

Sliver of light of God’s wisdom

I resolve to not let this minor string of daily inconveniences steal my joy!  Perhaps, if I can just borrow a sliver of the light of God’s wisdom, I can then see reasons to thank Him for these present difficulties.  Out of the little struggles of day-to-day life such as these, our character is formed.

Perhaps, a new list of things that I can still do, despite my lupus, could be prime mental fodder for my next commute.

Lupus and Benlysta Infusions – after one year

Phoenix Skyline

Today marks one-year since I first sat in this same infusion center in a Phoenix hospital and began receiving monthly infusions of Benlysta (belimumab) for my lupus.

Looking out the windows I can see the downtown Phoenix skyline in the distance bordered by hazy blue sky above and a green urban forest canopy of mature landscape trees across the base of the clustered skyscrapers.

A range of desert mountains completes the scene, flowing like a wide brown ribbon behind the tall buildings, separating the verdant foreground from the cloudy blue expanse above.  It hardly looks like the desert from this vantage point above the tree tops!  But, don’t be fooled by appearances, the temperature outside was over 100 degrees today.

Benlysta quieted Lupus

Today, as I contemplate the beautiful view outside, I compare the state of my health today with one year ago.  The path of this year-long adventure has taken me to a better place, overall improved health and a measurable restoration of my quality of life.

I sit here grateful for the funds made available to pay for my treatment, since the costs to my insurer for Benlysta infusions in the hospital setting (the administration site that my insurance requires) are massive.  The total one year cost is in the neighborhood of double my annual salary!

Assessing my Lupus

So, as the Benlysta drips into my vein, I assess the state of my lupus.  A year ago I would have assessed my “healthiness” at about 50% and now I would rate it at about 75% to 80%.

Today, I am clear-headed with central nervous system involvement quiet and under good control, significantly reduced arthritis inflammation, feeling pretty decent.  I am even having a hard time remembering the last time I had nasal or mouth ulcers from my lupus. It has been a long time since I suffered with deep bone ache in my arms and legs that lasted for more than one day.  My lupus neuropathy was flaring a month ago, but has quieted back down in the past few weeks.

Better health emerged

Benlysta slowly and methodically made a real difference, like the almost imperceptible growth of the beautiful flowers in my garden, that start as tiny seedlings and slowly develop into a blooming swath of beauty. So too, my lupus has quieted and better health has emerged in the place of rampant symptoms, malaise, fatigue and pain. What a great improvement one year of effective treatment has made.

Lupus and Benlysta – After 11 months and 12 infusions it is a milder, gentler monster

 

In a hurry and in brain fog

This week I passed the milestone of 11 months since starting Benlysta infusions for my lupus.  On Monday this week, I had my 13th infusion.  I woke up just a little over one hour before I was supposed to be downtown at the hospital.  Ironically, the day of my infusion was probably the groggiest, foggiest morning I experienced all month long, so I was grateful my daughter had volunteered to drive me there.  If not for her help, I would have had to cancel my infusion due to the intensity of my morning CNS lupus symptoms.

I didn’t have time to get ready for work before going to the infusion, especially after turning off my alarm and falling back asleep for an extra hour.  So, we left shortly after I got up, and my daughter expertly navigated Arizona’s heaviest freeway heading south in the traffic of a sluggishly moving river of morning commuters.  Sipping my second cup of wake-me-up coffee and feeling nearly “brain-dead,” I was especially glad to be a passenger, and that I was not me behind the wheel at 7:00 a.m. that morning!  The thought of me driving that early is a scary proposition!  We arrived at the hospital’s outpatient infusion center with a few minutes to spare.

sluggish river of morning commuters

My daughter hung around to keep me company for the next couple of hours, but we only spoke occasionally as Benlysta trickled into a vein in my right arm.  She was engrossed reading one of her two-per-day books as I played Angry Birds on my Nook Tablet.  Somehow shooting an endless string of little birdie missiles from left to right at grinning pigs on a digital screen was very therapeutic.  What amusement, what mindless occupation, what trivial activity!  But, it kept me occupied through my early cognitively challenged morning.

at work lupus fog had cleared

Later in the day at work, the lupus fog cleared and  my mind  functioned much more clearly: filled with thoughts of legal ethics opinions, employee development recommendations, cash-handling policy making decisions and recommendations for contract terms for our outside counsel law firms.  But, right then, in the peaceful hour in the infusion chair, I enjoyed the effortless, untaxing, carelessness of my handheld computer game.  Such simple bliss!  By the time we got back home, I had time to get ready and was finally clear-headed enough to drive myself to what ended up being a pretty normal work day.

I never seem to suffer ill effects from the Benlysta infusions themselves.  After nearly one year of infusions, the only side effects I have repeatedly experienced are tiredness and extreme exhaustion for a few days after some of the infusions.  After the first two infusions I had a couple of sharp quickly passing “zinger” headaches, but they never returned.  Also, in the first few months I had several sinus and bronchitis infections complicating my asthma.  But now, after the last few infusions, there have been none of these side effects except post infusion fatigue.

Has Benlysta mad a difference?

Have the Benlysta infusions made a difference?  I am measurably better now than I was before I started them a year ago in July, and can really sense a change.  Comparing my health then and now, I would say that using scale where 100% is totally healthy and 0% is hospitalized, I was at 50% a year ago just before starting Benlysta, and now after almost one year of infusions I am at 75-85% most days.  I still have up and down days, but the bad days are milder and less frequent.  The days when I feel as sick as before Benlysta are rare.

Lupus is now milder & gentler

During the past year, I have been able to successfully get my prednisone dose back down to 5 mg per day, and my rheumatologist is really pleased with this outcome.  For over a year before Benlysta, we could not successfully get my prednisone below 10 mg, and then it was only briefly dropped between repeated bursts back up to tapers from 20 or 30 mg.  It has been several months now since I have had to do a prednisone burst, and I have enjoyed the increased stability and quietness of my lupus.

Benlysta has not made fast changes, but rather slow, steady modest changes that are improving my lupus over time.  Benlysta is not a cure, lupus is still there, but after 11 months and 12 infusions, it is a milder, gentler monster than before!

 

Lupus rants, ridiculous recommendations, and real reasons to exercise

No miracle secret lupus cures!

I recently read a spirited rant from another lupus blogger about all the mindless things people say and suggest to lupus patients, such as suggesting that enough exercise will “cure” lupus. There is no secret cure for lupus! Yet, many well-meaning people persist in propagating myths about supposed miracle cures.  While some patients do go into full and lasting remission, they still have lupus, able to flare and become active again, without notice or clear cause.

Lupus still remains unpredictable and incurable.  Perhaps some day that will change, but for now, that is still the truth about lupus.

News Headlines

If a real lupus cure were suddenly discovered, it would be sensational news!

We would read about it on the front cover of Lupus Now, Arthritis Today, JAMA, Newsweek, U.S. News & World Report, CNN and Fox News, and the good news about it would go viral on the Internet.

The leading rheumatologists and research doctors would be interviewed on national television news and as guests on major television and radio talk shows.

The doctor who finds a cure…

The doctor who finds a cure for lupus will become a household name and might even win the Nobel Peace Prize in Medicine.

A real lupus cure would not stay a secret for long!

Reading the other blogger’s rant made me think about exercise, and some of the reasons I do it.  Although a moderate amount of careful exercise benefits lupus patients, it certainly is no cure! However, the right kind and amount can help a lupus patient be a healthier and stronger, and that is a great thing.  I feel better when I exercise, like anyone else with lupus or without it would.  Exercise is always an important part of a healthy lifestyle for any person, including lupus patients.

Exercise is of some profit

A lupus patient needs to be careful not to overdo exercise beyond the level safe for the current state of their medical condition.  Sore, painful joints and inflammation are red flags to take it easy, or to postpone exercise if  symptoms are flaring too much.  Then, when the lupus flare subsides, the exercise can resume or go back to normal levels.

It seems harder to accept a suggestion to exercise from someone who doesn’t have lupus or a similar auto-immune illness. It is easier to accept the recommendation if the advice come from another lupus patient who actually exercises.   Another patient can tell me how exercise it helps them.  Another lupus patient can understand why it is so hard for me to want to think about exercising if every joint hurts.  They also know why when the thought of moving seems like it will take herculean effort, how lupus joint pain and fatigue are counter-intuitive to the idea of movement and exercise.  It is so hard to imagine when it hurts to move, that getting up and moving more will make it hurt less.

Doctors give me reliable treatment advice

The suggestion to exercise is much harder to accept from someone else (other than my rheumatologist) who thinks they know exactly what will improve my lupus, or worse yet,  who thinks their suggestion to exercise, (take a supplement, wear some special metal jewelry, or some other thing) will actually cure my lupus.

I don’t necessarily want to hear these people’s ideas of what they think I just “need to do to get well.”  I want all my serious treatment advisers to have medical degrees!

However, there are some very important reasons why I exercise two to three times each week:

• My rheumatologist recommends it, and I respect his advice
• It will help me fight osteoporosis caused by steroids
• It strengthens my muscles and improves my circulation and tendon health
• It helps reduce my risk of heart problems that are higher in lupus patients
• It increases my oxygen exchange, strengthens my lungs and helps my asthma
• It is good for my digestion
• It strengthens my spine and reduces the frequency of chiropractor visits for three herniated cervical disks
• It also helps morning lupus brain fog clear up more quickly as increased circulation stirs up my body’s metabolism.
• It raises endorphin levels that naturally elevate my emotions/mood and reduces my perception of pain.
• It helps me fight weight gain from an increased appetite from steroids.

Exercise WILL improve how I feel!

I get my most of my exercise on an indoor cycle with a fluid trainer, and when I have access to an indoor pool, I have really enjoyed swimming.  I also do some gentle yoga exercises to improve my spine and joint health.

Even though there are plenty of people out there with some crazy ideas about how to magically cure lupus, there are some real things we can do to improve our lupus outcomes.

Exercise is something we can definitely do that may improve how we feel, at least a little.

Lupus and the best of the red, white and blue!

Today, we celebrate freedom!

Today, in the United States of America we are celebrating a national holiday, the anniversary of the declaration of our independence as a nation.  Our exceptional country, founded as a nation that protects personal freedom and liberty for all citizens.  I am, without excuse or apology, both a lupus patient and a patriot!  As a lupus patient, I also celebrate and thank God for many things in our country that impact lupus patients positively.

Many things together have helped make our country the most favorable place in the world to live as a lupus patient, and these all contribute greatly to the health and quality of treatment of people with chronic illnesses, such as lupus:

Best of the red, white and blue!

• Available medical care from the best system of well-trained doctors in the world
• Liberty to choose which doctor I will visit and choice to see any doctor on my health insurance plan, or to pay extra if I can afford it to see another doctor or specialist of my choosing
• Protection from discrimination due to illness or disability, protection for my medical privacy, and protection of my job when lupus interrupts my ability to work through laws like the Family Medical Leave Act, the Americans with Disabilities Act and the Health Care Insurance Information and Portability Act
• Drug companies that offer programs to pay the co-pays and drug costs for patients that need help
• Bankruptcy laws that protect me from financial slavery in the event I cannot pay unexpectedly huge medical or other bills
• Social Security and Medical Care funded by other taxpayers for persons who are unable to work because of disability
• Open access to public libraries and internet medical information sites provided free of charge
• Attorneys in our legal system that aid patients with navigating the disability application process, and are paid only if and when they help secure a patient’s benefits
• Lawyer’s professional ethics requirements that they donate a certain percentage of their work to people who cannot pay for their services, such as underemployed or unemployed lupus patients or others with limited resources
• Special parking laws, placards and plates that give close access to buildings for disabled persons and require wheelchair access everywhere
• Communities all over our country that fund no-cost or reduced-cost transportation for disabled citizens
• Major retail corporations and pharmacies that willingly offer lists of hundreds of common medications at low ($4 to $5) costs
• Tax exempt status for non-profit organizations such as The Lupus Foundation of America, and its many local chapters that support lupus patients, lupus research and support services and for lupus patients, by encouraging benevolent tax-free giving by citizens and corporations
• Federal and state tax laws that give deductions for high medical treatment and transportation costs

Celebrating our precious freedom to vote,
and to exercise our will as a people!

And lastly, I celebrate the wisdom of the voters in all of our great states, who watch the ongoing decisions of their elected representatives.

We cast our ballots in local and national elections and exercise our liberty to check any failure to represent our wishes.

We have the recurring ability as voters to correct any dangerous or uneven balances of power that could harm our freedom or well-being as citizens of this great nation.

God bless the adventure of freedom in our great nation!

God Bless America!

Lupus when picking up paper hurts

turning pages was painful

My hands have given me a lot of trouble lately, and normal actions have been unusually painful.  Amazingly, I can play the piano without increasing my joint pain, but a few very simple tasks have been a different story! Today I was convinced it is time to get help.  Yesterday I found it hurt to rip open an envelope.  Today, I was sitting at my desk at work, turning the pages of a reference binder and realized that even picking up the pages and turning them was painful.  That was the last straw!

I think its time for help.  Lately I have had increasing trouble with buttons and zippers and have had to ask for help.  Even putting on socks or pantyhose hurts, but I am not about to ask anyone to help with those.  (Well, maybe my husband could help with the socks.)  Pushing down the button on the car door handle is almost impossible without using both thumbs, and opening snug jar lids or thermal mugs is downright impossible.  I have even had trouble getting my credit card out of my wallet.  The maintenance dose steroids are not helping.

It has been a long time since I last took non-steroidal anti-inflammatory drugs (NSAIDs) to control the inflammation in my joints and lupus arthritis, not since before Rituxan infusions several years ago.  Now, I think it is time to ask for them again.

I cannot take any of the over-the-counter varieties such as aspirin, ibuprofen or naproxen, so I need a prescription. Acetaminophen doesn’t count, since it is an analgesic and fever reducer, but not an anti-inflammatory drug, even though it gets grouped in with the NSAIDs.  After a major car accident almost 30 years ago, we tried all the different NSAIDs then available, and one I tolerated was an (old) seldom prescribed non-steroidal anti-inflammatory drug, sulindac.

drugs

After taking all the fancy new high-tech biologic drugs for my lupus that cost thousands of dollars per dose, maybe this old simple medicine that worked before will work again. Perhaps it is the small tree we missed in a vast forest of drug choices.  Sulindac had few side effects and controlled my ballooning joints effectively, long before I ever took methotrexate, azathiaprine, rituximab or belimumab for my lupus.

I’ve decided it is time to mention this new (old) idea to my doctors and see if they agree with my suggestion, or perhaps they will have a better idea.  I cannot accept the idea that lifting a piece of paper should  hurt!