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.

Lupus Fatigue and Finding a Fighting Spirit

A tidal wave of lupus fatigue.

As I stand barefoot on my cold, wet beach and watch the receding tidal wave of lupus fatigue ebb away from my shore, I see surrounding me the vast lifestyle devastation the overwhelming flood of tiredness left in its wake.  Mayhem is everywhere.  Laundry sits unfolded, dust accumulated, real and junk mail sit in an unsorted stack overflowing my desk, and my rugs and floors are looking pretty sorry indeed! All around is a general sense of disordered clutter and mishap.

While seeking a means to withstand the exhaustion and bone-tired feelings, all my work seemed half-abandoned at home and at the office.  I spent many days sleeping until noon, some days telecommuting, some days lounging in pajamas all day, a few days going in for half-days, but braved only a couple of full in-the-office work days.  The siege of fatigue waters have left an unkempt landscape about me as my physical weariness finally begins to recede.

Domestic and professional
disorder after a flare

Once again, I begin to pick up the scattered domestic and professional pieces of my normal life following a lupus flare.

Although this flare has been quite disabling and my lupus arthritis was very aggravated, I am thankful that neither my central nervous system lupus nor neuropathy flared.  Through the last couple of weeks, these often clear manifestations of my lupus have remained unusually quiet, and for this I am grateful.  At least, this was not an all out every system lupus attack, it was merely physical and not mental.  The only predictable thing about lupus is its unpredictability.

Hope and snow yesterday!

I had hope yesterday and even more this morning that my two-week flare of lupus fatigue is finally ending.

Yesterday brought a massive real weather storm to Arizona, and parts of the Phoenix valley saw snow, sleet and hail – a rare phenomenon in our desert city!  I stood on the second floor balcony at work with co-workers, as we held our hands out to catch and look at the soft white substance that melted on our hands and accumulated on ground below.  My son-in-law, a native Phoenician, regaled us last night with a report of his first experience driving in snow.

Although we had heavy rain and icy forms of precipitation all day long, I was feeling measurably better and was able to work a full day at the office.  My joints were still very sore, but my spirits and energy were on the rise.

Birds, singing in the rain!

This morning, as I hear the birds singing outside my window, I feel a little like joining them.  Perhaps a couple of the areas of disorder that are now beginning to bother me will get tackled this morning. Earlier this morning, I stood outside in the 48 degree morning chatting with husband while his rain-soaked car warmed its engine and dripped into the puddles on our driveway. The cool, moist morning air felt refreshing today instead of wearying.

With near exuberance I heard myself proclaim, “I feel almost like myself again.”

We will rejoice and be glad

Indeed, every storm has an ending, and today, I have once again found my fighting spirit!

I am just now reminded of the scriptural words I sang to a simple hymn I played yesterday morning at the piano.  “This is the day that the Lord has made, we will rejoice and be glad in it,” Psalm 118:24.

Come to see the butterflies, and leave with lupus awareness

Come to see the butterflies…

A significant number of people who visit my blog find it through search engines like Google, Bing, and Yahoo.  Since this blog is primarily about lupus, one might think that everyone who finds it is looking for information about lupus.  While that is true for many visitors, a good number also follow links here because they are looking for images of butterflies (maybe because they like butterflies as much as I do!)

No matter why people might find this blog, I am glad that everyone can leave with greater lupus awareness.  This is a place where both butterflies and lupus awareness can be found in abundance.  If you want to know more about the connection between lupus and butterflies, check out my April 24, 2012 post, “Lupus and it’s mascot: butterfly or wolf?“.  This quickly took the “LAward” for the most highly read post on this blog, well into tens of thousands of reads!

And leave with…

So, if you are one of those who found me because you were seeking butterfly images, welcome!  I trust you will take a moment to learn a little more about lupus, perhaps by stopping for a few minutes to read a post or two.  You will find at least one butterfly picture in every blog post.

If you want to find out more about lupus, please read the “Lupus Medical Information” page of this blog.  It will take you to a page with basic information about lupus and links to more detailed authoritative information.  I suggest at very least visiting the Lupus Foundation of America at www.lupus.org.

If you just want to see the pretty butterflies and don’t feel like reading about lupus, no problem!  Please just click on the “Butterfly Collecting Adventures” button or browse through posts to see the butterflies on each, and enjoy.

My hope is that maybe you will do both — enjoy the butterflies and learn more about lupus!

If all you really want is a postage stamp summary of lupus, and no more, here are a few quick points:

• Lupus is a systemic connective tissue disease in the same family of auto-immune illnesses with rheumatoid arthritis affecting skin, organs and other tissues and body systems.
• Many lupus patients have skin rashes, arthritis, fatigue, mental clouding, mouth/nose ulcers, a butterfly shaped rash on their cheeks and are positive for antibodies against their own body cells such as ANA (antinuclear antibodies).
• Lupus can attack the kidneys, and is a leading cause of kidney failure.  50% of lupus patients have some level of kidney involvement.
• Lupus is difficult to diagnose, because it affects so many systems of the body, and can easily be confused with other diseases.
• Lupus affects each person differently, and can change suddenly and unpredictably in the same patient, going in and out of flares and remission.
• Although lupus is potentially fatal, if found early enough and treated properly Lupus can be well-controlled.
• Most patients can live a normal life span with little or no organ damage with standard treatments.
• Lupus is an important women’s health issue – it discriminates unfairly against women and minorities.  90% of lupus patients are women.
• Lupus is more prevalent in women of color: Hispanic, black, Asian, and American Indian women, with the highest mortality rate in elderly black women.

Lupus awareness…

Lupus awareness is very important, especially for those people who don’t yet know they have lupus.  For example, many people know enough about diabetes to recognize possible symptoms in another person, and would urge someone with diabetes symptoms to seek medical advice.  So, also, knowing enough about lupus to recognize its common signs and symptoms in a friend or family member could make a great difference, or possibly even save her life.

Lupus awareness is very important.  Although there is no cure yet, there are new and exciting medications, treatments and ongoing research that can help prevent lupus from destroying the health of those who have it.  Because one out of every 150 people has lupus, it is very likely that someone you know has lupus.

Thank you so much for stopping by, even if it was just to see the butterflies.  If you learned a little about lupus, even better!

Thank you for visiting
Lupus, the Adventure Between the Lines!

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 irony of sleeplessness

Exhaustion and sleeplessness

Exhaustion and sleeplessness – two contradictory problems that stem from lupus when it flares.  The irony is that lupus brings on neuropathy pain and deep bone and tendon aches to my body in the midst of those nights when I am already exhausted and desperately need sleep the most.  Sometimes, on nights like last night, I take pain medication in the hopes of quieting the pain enough to sleep, and knowing the medication should also help knock me out.  Last night, I was resting physically, laying still in my bed, but the mental rest of sleep eluded me entirely.

jealous of those who slept

Morning neared as I heard the grandfather clock strike five o’clock.  I quietly listened to the song birds begin to stir in the predawn darkness, rustling in the lemon tree outside our bedroom window.  I was motionless and sleepless next to my sometimes snoring, slumbering husband.  To be honest, I felt intensely jealous of his ability to fall deep into restful sleep, while I stared at the dark ceiling awaiting the first rays of light.  Soon, there was chirping and some short bursts of morning bird song and cheerful chatter.  Even the birds made me envious!  I knew that they, like my husband, had slept all night and were just now waking a few moments ahead of first light.  Their tiny avian body clocks were in good working order, but alas, mine was not!

slipped my toes into waiting slippers

As smoky first light began to slowly illuminate the room, my body began to respond to acknowledge it was morning.  I sat up, pushed back the covers and slipped my toes into the waiting purple slippers on the hardwood floor.  Scuffling out to the kitchen, I accepted my weary plight.  Morning had now broken and I was completely and utterly exhausted.  Slightly brain-dead and concerned about the tendency of my CNS lupus to flare in the wake of sleep deprivation.

No time left for sleeping

There was no time left for sleeping and slumber, since my day was going to march forward whether I was rested for it.  Soon, we would be breakfasting with our son, daughter-in-law and their four little ones.  Today, I am determined to stifle and rise above my exhaustion, counting on the adrenaline of joy to fill my precious moments with our visiting grandchildren.

the joy of the Lord is my strength

Thanksgiving week is set out before us, and we are blessed with our out-of-town loved ones visiting.  Today, although I would love to be fully rested to enjoy them with full energy and bounce, I will make do with what energy reserves are left over from yesterday mixed with a bit of “faking it.”  The irony of wanting and needing sleep, and not getting a drop is not going to erode the blessings of the day and week ahead.

My thought for the day comes from one of my favorite Bible verses, Nehemiah 8:10, “the joy of the Lord is my strength,” and today God will have to be the sole source of my sustenance and power.  Sleep may have been lost to me, but this day it shall not take my joy with it!

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!

Lupus fatigue and catching a cat… nap

 

Bone-tired lupus fatigue

Deep bone-tired fatigue is one of the ongoing challenges of Lupus, and coping with it sometimes requires a couple of simple, old-fashioned approaches. First, one the best things to combat fatigue is adequate sleep, and a second tactic is to catch a cat nap in the middle of the day. While this sounds simple and logical, moving these two approaches from goal to reality is sometimes more of a challenge than I expected!

Chasing Mr. Sandman

Chasing Mr. Sandman

Lack of adequate sleep is a major obstacle for many lupus patients, and I am no exception. Sometimes the pain from a throbbing lupus headache, intensely sore joints and ligaments, or deep bone ache in arms and legs can prevent my success falling asleep, or can suddenly wake me in the middle of the night.

My sleep is most commonly interrupted by either peripheral neuropathy or deep increasing limb pain, accompanied by growing malaise that breaks through all the levels of sleep to wake me. This type of untimely alarm often cuts my sleep in half and contributes over several days to accumulated sleep deprivation, a major cause of my fatigue.

I have a few readily available sleep strategies to deploy against lupus pain:

1. Prayer on my pillow, asking God to help me rest and sleep, and focusing on worship to take my mind off myself and my pain, seeking peace that only God can give. Sometimes I can successfully slip back into sleep while praying.

2. Taking over-the-counter analgesics such as Tylenol to cut the pain enough to permit sleep, sometimes effective but often not enough to do the job.

3. Increasing natural levels of L-tryptophan by combining warm milk and honey with decaf tea as a middle of the night latte.

4. Exercising with midnight yoga or stationary cycle to increase circulation and alter my metabolism. Exercise can help interrupt pain and raise endorphin levels to naturally reduce the perception of pain. Although exercise may make it hard to get back to sleep, it can help interrupt or greatly reduce my pain.

5. Taking a hot bath or shower to relax and lower the pain perception sometimes helps.  Warm water can be a soothing comfort, and is especially effective at lifting overwhelming malaise while partially relieving pain. Sometimes, I can even fall asleep in a bath. If I set a timer I can keep from waking up a couple of hours later in a cold tub of water. Often, a warm bath gives enough pain relief to allow me to relax and slip back between the sheets for a little more sleep.

Sleep techniques for lupus pain

6. Taking stronger pain medications or narcotics will usually overpower the pain and allow sleep.  Strong pain killers are a bad idea when there is inadequate time for the medications to wear off before I have to leave in the morning. Driving with drug induced (or any known cause of) mental impairment could be a dangerous crime!

I have not yet asked my doctor for sleep aid medications, but may soon. Nonetheless, usually, one of the approaches above helps address my great need for sleep.

Catching the Cat… Nap

Catching the Cat Nap

When fatigue is overwhelming, and lasts for days or weeks at a stretch, another simple approach to get more sleep is to catch a cat nap in to middle of the day. Cat naps can make a huge deposit into my sleep account and cut the size of my overall sleep deficit. The sleep experts explain that it takes much less time to correct a sleep deficit than it does to acquire sleep deprivation. A few days of adequate rest in a row can completely erase a long-standing sleep deficit.

Usually, the only days I can steal time for a cat naps are Saturdays and Sundays, or days I stay home sick or telecommute. It is often hard to chisel out the time to cat nap. On days when I am home spending precious time with family, taking time out to sleep in the middle of the day can seem like an intrusion into quality time with loved ones. I am grateful that my husband is often the one who first observes and identifies my extreme fatigue, and encourages me to get strategic cat naps. He constantly encourages me to get enough sleep.

Getting enough sleep can greatly contribute to my overall health with lupus. A tired body is less effective modulating immune responses, and is more susceptible to the effects of lupus. Sufficient rest can provide greater strength to face the adventures and daily challenges of lupus.

I think I’ll go catch some Z’s!

 

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 – One year rheumatologist check up with B+ Benlysta grade

One year of Benlysta

This month will mark one year since starting Benlysta infusions for my lupus.  As mentioned before, my lupus is thankfully now a milder, gentler “monster,” and my overall health has improved markedly.  Most importantly, my symptoms of central nervous system involvement and my energy levels have greatly improved.  Now, my cognitive function is much more stable, my short-term memory has vastly improved and my analytical and problem-solving mental processes are “back.”  I have really enjoyed overall improvement in my ability to complete mentally challenging essential functions of my job as a government law office administrator.  Benlysta helped me continue working.

The progress of lupus improvement from monthly Benlysta infusions was slow and moderate, but cumulative.  At the one-year milestone, looking back at the state of my health then compared to now, there is an unmistakable difference.  In the eighteen months before starting Benlysta, I had come of near remission and my overall condition was deteriorating steadily, and was again threatening my work.  After a few months on Benlysta my lupus quieted enough that recurring steroid bursts were not needed, and my daily maintenance steroid dose was cut in half.

Before Benlysta

Before Benlysta, my worsening lupus symptoms were many:

• CNS lupus was extremely flared w/ increasing cognition, memory and analytical deficits
• fatigue and malaise were overwhelming
• joint pain and inflammation levels were high
• gnawing “deep bone pain” in the long bones of my arms and legs
• horribly itchy lupus rashes were out of control on my hands
• mouth and nose ulcers were almost constant
• malar butterfly rash, mostly showing up “peekaboo” more in the mornings and fading at night
• sjogren’s syndrome was  very active in mouth and eyes
• onset of intense peripheral neuropathy pain almost every night
• insomnia due to neuropathy symptoms

Now, after one year of Benlysta infusions, my lupus complaints are fewer:

• pesky, but much milder neuropathy pain several times each week
• insomnia from neuropathy is much less frequent
• arthritis inflammation in my hands running amok
• a handful of random discoid lupus rashes come and go on my hairline, face, neck and arms

Benlysta gets B+ grade

So, the doctor is continuing my treatment with Benlysta infusions, and is very pleased with the improvement of my lupus.  Although we both originally hoped in vain for approval of Rituxan, because of my past dramatic improvement from using that biologic drug, that is old history.  Now, Benlysta has done a good job of quieting my lupus and improving my health.  If I were to rate Benlysta’s performance over the past year with a letter grade, it would definitely earn a B+ rating.  [Although Rituxan comparatively earned an A+, the insurance company would not pay for it.]  Benlysta’s B+ is an acceptable, welcome outcome!

Sulindac for inflammation

I am re-starting the anti-inflammatory prescription drug Sulindac for my arthritis inflammation.  This is my NSAID of choice, since I cannot take over-the-counter aspirin, motrin or naprosyn due to severe adverse reactions.  I took Sulindac successfully for most of 25 years, and it very effectively controlled ballooning hand knuckles.  For the first time in years, I was able to stop taking it completely for the five years following my Rituxan infusions.  It is time to start taking it, once again, since Benlysta is not effective controlling the arthritis inflammation of my lupus in my hands.

Follow Up in 4 weeks

To address my current problems with peripheral neuropathy, my rheumatologist prescribed Lyrica (pregabalin) to help reduce nighttime nerve pain, without having to resort to taking powerful pain killers to get to sleep.  I was surprized when I my pharmacist told me that Lyrica is not on my insurance formulary, and the drug requires precertification.  I cringed at the $350 it would be without my insurance, so my pharmacist contacted my rheumatologist to get the pre-certification process started.  Hopefully, my insurance will coöperate and the  approval will go quickly.  I will follow-up with my rheumy in four weeks.

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.