One Patient's Positive Perspectives

Posts tagged ‘Symptom’

Lupus and the adventure of finally finishing something

Senior year of high school

Finishing Something!

Finishing something

There is no feeling quite like setting out on an adventure to finish something that has been waiting a very long time to be completed. So it was this week. After a long thirty-four year interruption, there was finally enough health, time and money to return to college to finish a nearly-complete bachelors degree.  Thirty-four years was time enough to equal more than half of a life, filled with countless challenges and blessings.  Yet, this was the one undone endeavor that still carried a sting of lament.  After investing four years at two colleges, the final semester of college was never completed.

Over the intervening years, a lot of stuff happened!  Enough years had passed to,

  • Love a husband more than a third of a century
  • Work long enough in a career to earn a pension and start to think about retirement
  • Conquer great financial hardship and recover, and go on to own two homes
  • Face the threat of imminent death three times
  • Raise two children and watch them graduate from high school and college
  • Watch children marry and enjoy four grandchildren
  • Lose one parent suddenly and lose the other slowly to dementia

Why the long wait?

Paying medical bills

Paying medical bills

Why did it take so long to get to this point? In a couple of words, life and lupus got in the way!

Several times a target date was set and never worked out.  First, after taking a semester off college to get married, a baby [note, the pill does not always work!] was soon on the way and a prayerful decision reached that my husband needed to finish college first since we had started a family who needed nurturing.  We assumed my degree would quickly follow, as soon as toddlers went off to school.  But, when severe asthma shattered those plans my husband’s medical bills equaled enough to pay off a house (without ever having a house to show for it.)  Somehow we paid all the bills, but it took seven years, and thankfully, without declaring bankruptcy.  It was a small price to pay, and we were grateful, because the doctors saved his life!

Sober concerns about my husband’s long-term survival made him urge me to find a job that could support us right away as well prepare me financially for the very real possibility of losing him.  So, this meant going to work without finishing the degree.  Even then, Lupus was lurking around in the shadows, but still had not introduced itself properly.

As kids went to school, their dad was home, through kindergarten and several years along.  This meant my job was the sole support for the four of us for a while.  It was a great blessing to see God’s wonderful provision meeting our financial needs through my new career as a paralegal trainee, over the next three decades promoting through the law office ranks to government law office management.  Eventually breakthroughs in asthma medications stabilized his health, but by then our children were a little older and my career was well-established.

Trading places!

Photo Lupus Adventurer's Daughter-In-Law

Photo by Lupus Adventurer’s Daughter-In-Law

Then, we traded places.  lupus came out of hiding while he regained health and became the strong one.  As children turned into teenagers, lupus was in full flare with arthritis, fatigue, rashes, mouth ulcers and deep gnawing bone pain.  Many nights spent in a chair rocking back and forth was sometimes the only tolerable way to pass through those early morning watches.

Then, while grieving my mother’s death, opportunistic lupus rampaged through my body, targeting my central nervous system and muddying memory, coordination, speech and analytical thinking.  That was the year lupus moved in like an unwelcome intruder, threatening my career and nearly completely disabling me.  When abdominal artery ruptured, nearly taking my life, while our kids struggled with a mom who got confused, forgot things and was struggling to stay afloat.  When there wasn’t enough of mom to go around, there was also complete peace that husband and children were the priority that came first.  College was never even a consideration because of time and money.

Finding an open door

Two important questions

It did not make sense to put personal goals first unless it made sense to heart, budget and what mattered the most in the depths of my heart.  While wishing I could finish college, other commitments and priorities mattered far more. Character and patience required waiting until a right combination of physical health and strength, priorities and schedule, and financial resources and wisdom would (ever) add up an open door.  A final decision also required defensible answers to two important questions, especially this late in the game:

  • Would there be enough return on the investment to make spending the money a wise financial investment?
  • Would the degree contribute enough to reaching future goals to merit spending the necessary time and energy?

Regardless how long it took to get here, there are no complaints about the wait. It was always clear when God used events to deliver a very personal message that not all moms should be “stay home” moms, and not all moms are supposed to get their college degrees before their kids do!  Sometimes, God calls a few of us down a different, sometimes difficult path to help us understand His love and care through the struggles.  Now, it makes sense to spend the time and money on getting the degree completed. It will boost earning power and open up a wider arrange of choices for a meaningful semi-retirement second career.

Back on campus!

So, this week it was thrilling (and a little nerve rattling) to become a college student once again.  On-campus classes are held one night each week for the next eighteen months as part of the degree completion program. Someday husband, daughter and son — who all finished their college degrees (daughter has two) — will assemble to watch mom put on cap and gown and cross the stage to receive her diploma.  This is the time to make it happen, lupus and life not withstanding!

Lupus and a better no gray way

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New Oil-Based Hair Color without Ammonia — No Sting, No Smell, No Rash!

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Image courtesy of Wikimedia license Incomposition Sikkim

We should know not to try to draft a post from a cell phone!  I was sitting at my doctor’s office getting my Benlysta infusion this afternoon with just my cell phone along for amusement.  So, I started trying to write a post I have been trying to get to for a couple of weeks.  I uploaded this picture from my windows phone, taken at a recent hair dresser appointment.  While logged in earlier this evening to finish the post, I discovered that the picture had been posted all by itself, without the story behind it.

Well, perhaps I should finish the post, now, especially since some of you readers have already “liked” it.  That is great faith, liking a post before it is written!

At my last hair appointment, my hair dresser was excited to tell me about a new Matrix hair color that the salon had started using. She has been using a Matrix formula to do highlights and lowlights that covers just the gray roots, about every 8 weeks.  The formula was pretty mild, but still contained ammonia and caused my scalp to burn while it was on my hair, and then afterwards I would sometimes get lupus rashes on my hairline where the scalp was irritated.   It was not uncommon to need prescription prednisone ointment for a few days to keep rashes in check.

So, the new oil-based Matrix formula Rosa wanted to try has no ammonia, and doesn’t smell or sting, and there was no need to sit under the hair dryer.  She explained that the oil in the formula carried the pigment deep down into the hair shaft and bonded to the inside of the hair, making it smooth and healthy instead of damaging the hair.

Rosa and I have occasionally discussed the problems many lupus patients have with perfumes, dyes and hyper allergic response to many chemicals in the environment.

You see me smiling in the picture, because even though with goopy hair dye all over my head, I somewhat resemble a drowned rat, my scalp was not burning nor were my nose and eyes wincing from fumes.  No smell, no burn and afterward… no rash after my hair appointment.

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Meet Rosa!

I updated this post when it was finally finished so you could also meet my hair dresser, Rosa. She has been taking care of my hair at JC Penny’s salon for over a year, and “rescued” my dry damaged hair from previous over-processing.  My sister-in-law introduced me to her, and I have been very happy ever since.

So, this time, she recommended the perfect new permanent hair color for a lupus patient.   You might just want to ask your hair dresser about the new Matrix oil based formula color, “Colorinsider.”  Check out their web site link in the caption of the picture I “borrowed” from them.

I don’t often support a product (and am not being compensated for this in any way) unless I really believe it is something worth sharing with other lupus patients.

What Comes After Lupus Awareness Month 2014?

Lupus Awareness Month

ToolkitLupus Awareness Month 2014 has now drawn to a close, with a full 31 days of heightened lupus awareness now behind us, and eleven months ahead until Lupus Awareness Month 2015.  Now what?  Does that mean we should stop our efforts and wait for May, 2015 to begin lupus awareness activities again?

Of course not!  So, what comes next?

The Lupus Foundation of America has some outstanding lupus awareness resources that will help you all year to help increase understanding of lupus.  Check out their web page for the Awareness Tool Kit for more things you can use anytime.

In the Tool Kit, there is an outstanding one-page Fact Sheet about Lupus:

Lupus Fact Sheet from LFA 2014

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Lupus Infographics

Lupus Infographics

My favorite all-year components of the Awareness Tool Kit are four Lupus Infographics .  Although designed primarily for use by the press in Lupus Awareness community service messages, each one is suitable for any lupus awareness use, printed on letter size sheet for flyers or as larger posters. However, the Lupus Foundation of America has these conditions on their use:

“The graphics provided below are made available for free download and unrestricted use by bonafide news organizations.  Please credit Lupus Foundation of America, Inc. as the source and, if appropriate, include a link to the LFA website, lupus.org, for additional information about lupus.”

Signs  & Symptoms of Lupus – Infographic

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The Impact of Lupus in America – Infographic

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The Burden of Lupus – Infographic

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Lupus Resources – Infographic

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Lupus and the first new rheumatologist appointment

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positive – reassuring – affirming

In three words, my first appointment with my new rheumatologist was positive, reassuring and affirming.  After twenty years with my previous rheumatologist, changing doctors was not a lightly considered move.  I am generally a very loyal patient, and honestly, it was a bit scary to think about changing.  But, it was time to make the change!

Lucy Advisor

much prayer and advice

Much prayer, consideration and soliciting of comments from my circle of personal advisors went into this decision.  Thankful for many around me who listened and opined during recent weeks, my final choice to make the move was based on multi-faceted health, economic and philosophy-of-practice concerns.  Any apprehension I felt before making the change, vaporized the moment my new doctor stepped into the examining room with a smile.

“Hello, glad to see you again,” was her greeting, as I shook her outstretched hand and reciprocated the gesture.  We had a brief first exchange acknowledging the thread of our first social conversation outside the clinical setting.  Confirming my intent to opt for completely transferring my care to her, and not just getting a second opinion, we launched into her review of my medical and treatment history.

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diagnostic tests

It was clear she was extremely “present” in the conversation, intuitive, highly knowledgeable, and gave me a strong impression of her competence and confidence.  Without seeming to be in a great hurry, she efficiently completed a thorough history and head-to-toe physical exam, while fleshing out important details forming her composite picture of my present condition.  She determined she would continue my current treatment plan, at least at first, and ordered several diagnostic tests to help establish the baseline for my continuing care.

We discussed my recent failed attempt at steroid withdrawal, and the results of my personal “crash and burn” that occurred about ten days before Christmas.  I was relieved that she didn’t seem troubled at all that I had felt the need to self-medicate to handle the crisis, and understood my concerns about preventing a repeat of the botched process.  She concurred with keeping my daily prednisone dose at 7 mg, and commented that “it is not at all unusual for many lupus patients to stay on steroids indefinitely.”

All but one of my other current medications, including plaquenil and Benlysta infusions were also continued.  We discussed the fact that I have never taken Cytoxan or Cellcept, and it seemed she was intrigued about that not having been used in the past.

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establish baseline levels

My new doctor went on to explain to me that she doesn’t ordinarily recommend attempting steroid withdrawal in the winter months, the season when most lupus patients tend to flare.  She made me feel the approach I took to handling my pre-Christmas crash, burn out and flare was just fine.  I was glad for the affirmation of my judgment, while voicing my commitment to medication accountability to her.

Walking out to my car, sunshine gently warmed my shoulders, as body and mind released into a deep sigh.  I felt the affirmation that I had absolutely made the right decision.  Driving away in my little PT Cruiser with a smile, I was glad.  Apprehension of the unknown, and the reluctance to face a major change was behind me, with foundations in place for a healthy patient-doctor relationship ahead.

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the right choice

Now, after having placed myself under the care of a new, highly knowledgeable specialist, a great sense of peace and relief followed the important first appointment.

It was indeed the right choice!

Lupus adventures navigating a new doctor’s forms!

Filling out new patient forms

Filling out new patient forms

Every person with a chronic medical condition, like lupus, has done this time after time.  Each time we face the adventure of seeing a new doctor or medical provider, we do it all over again.  I cannot help but wonder what it would be like to fill out forms for a new doctor, if only.  If only I were a normal person, without lupus! Perhaps that would be the ideal new patient experience.  But then, perhaps I wouldn’t be needing to do it at all.

Follow along with me as I wish I could just fill out the form for my healthier alter-ego twin sister.

If it were my healthier twin…

Returning empty handed

Returning empty-handed

First, IF I were my healthier twin, it might be possible I have been to this doctor before.  It has been such a long time, I can’t  remember when or if it was, and so I ask the receptionist.  “I think I have seen this doctor, can you remember when I was here last?”  If I did, the year escapes me!  I insist, “I really think I have been here before,” but because I have been away and healthy so long, the receptionist hands me a clipboard.  She asks, “since this IS your first visit, would you please fill out all the forms, please, and bring them back when you finish?”  My healthier self continues to protest, ” I think I saw Dr. Smith a long time ago,” so, she relents, and heads off to search her files for my chart.

While I stand there, holding the clip board and waiting, I contemplate that it has been so long ago, the young receptionist was probably in kindergarten, she couldn’t possibly remember me.  Reason whispers in my ear, “any old records the doctor had about me were probably destroyed long ago.”  Returning empty-handed, she announces politely, “IF you had a chart, we cannot find it, SO, we really do need you to humor us and fill out all the forms all over again.  We will have to make you a new chart.”

Nope, it’s really me after all…

Now, since I am ME and not my mythical healthier counterpart, I really AM a new patient.  However, I notice she already has a large file on me in her hands, brand spanking new, presumably holding unread fresh photocopies of medical records and diagnostic reports sent over from all my other doctors, labs and radiologists.  Although she surely has my complete medical history in the shiny new file, she STILL insists, “please fill out all the forms.”

So, still holding the clipboard and pen in my hands, I sit down to begin working on the first question, “Describe briefly your present symptoms.”

Symptoms

Describe your symptoms...

Describe your symptoms…

IF I were my healthy twin, I would fill in something like, “sore throat.”  But, since I am ME, and not healthier HER, instead, I panic!  There are only five lines to write the answer on.  How small can I print to get the most important things in that space?  What should I leave out, what should I include?  Should I limit my answer to just the issues related to this doctor’s specialty, or should I go for the grossly “TMI – too much information” answer?  Should I list the diagnostic criteria, or just try to sound like a novice patient and graphically describe what each of my lupus symptoms looks like?

I suppose to myself that “normal” patients just answer briefly, like my healthier “twin” would have, “sore thumb” or “sore ankle,” or even a much longer healthy persons’ detailed answer, such as “stubbed my big toe last week and it still hurts, so I think I have arthritis.”

Next question, “date symptoms began.”  I just put in “childhood” since I cannot begin to remember what early age I was when the first signs of lupus started.  I ponder, “how young was I when the childhood arthritis, stiff knees, swollen knuckles, mouth ulcers, fatigue and facial rashes all began?”  Perhaps my healthy alter-ego could reply, “two weekends ago,” or something else simple and current, but not me.  This question takes some contemplation and memory jarring to complete.  I keep hoping in vain that the form will get easier after I answer this question.

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The inevitable request…

Medical History

Then, the inevitable request, “list names of previous doctors you have seen for this or similar conditions” I hear myself talking outloud in disbelief to myself, “Really, only two blank spaces?” I decide to work backward chronologically until the space is full, wondering, “do most people just say, “none?”

Next, there are several detailed sections for past personal medical history, rheumatologic (arthritis) history, previous operations, and the obligatory family health history.  This time, I am glad to see that there are at least twelve lines for medications, grateful I will only have to double up on some of the lines.  If I write small, I think can probably list all my current prescriptions in that space.  Oh, no, the second column asks for doses, strength, how long I have taken each medication, and how much they help, “a lot, some, not at all, and not sure.”  I decided to guess a little for medications I have taken so long that I don’t even think about the dose any longer or remember when I started taking them.

My date guessing centers around trying to remember the major sequences of milestone health events in connection to which house I lived in, the births of my children, their ages when we moved, their graduation from high school, marriages and when certain lupus flares and major changes in treatment happened, and dates of major accidents, hospitalizations and surgeries.  This is not an exact science, but I am giving it my all out best to be as correct as possible.  Somewhere in the middle of all the guessing, I wonder if the exact answers even matter to this doctor.  Are estimates good enough?  Probably!

Medications

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Checklist of past medications

Then comes the list of past medications.  I am very relieved to see that the rheumatologist has given some thoughtful courtesy into the design of the form, listing forty common rheumatology drugs, so I check off about 1/3 of them.  I realize there are many that I have completely forgotten about until now, ones that I have taken in my seemingly ancient treatment history.  It is getting hard to remember how long ago I took some of the drugs, so I find myself guessing, hoping again that my new doctor is not big on exact details.  Just like studying history in school, I like the idea that the concepts are important, not the exact dates!

I look up at the clock and realize I have already been filling out the forms for over twenty minutes.  My appointment is scheduled for ten minutes from now, and I have three more pages to fill out.  I can see this will take a while!  I can imagine I will still be working on finishing these forms while I am waiting in the examining room.  I remember the receptionist had told me to arrive a few minutes early, and now am chuckling to myself she should have said a couple of hours!

I check  off the boxes for eight of the twenty-four past conditions I have had, and list my six previous surgeries, one transfusion and one other serious injury.  Then after all the histories, is almost a whole page about medications, present and past.

Lifestyle, exercise, more details…

Lifestyle, exercise & details

Then,  a few dreaded lifestyle sections asking about special diets, regular exercise habits, social history, home conditions, education and employment history.  I find myself amused at the level of detail asked in these sections, wondering if I should make these up for the fun of it.  Does the doctor really care if I was unwise enough to smoke twice a day between ages twelve and fourteen?  My integrity weighs in and I tell the truth, answering for the year “early teens.”  I realized I take all these questions much more seriously than any normal person would or should, but then, that’s the real me with the pen in my hands, not my healthier “wanna be.”

What are they really asking for?

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What answer do they really want?

A last, I get to the last page!  I am staring at a full four column sheet of categorized check boxes, listing seemingly every possible health symptom or malady, grouped by labeled categories for each bodily system.  It seems like I answered this a couple of pages earlier, but since there is a longer list to choose from here, there must be a different reason for this question.

The instructions say to “mark any of those problems which apply to you.”  Does that mean that have EVER applied to me, RECENTLY applied to me, USUALLY apply to me, or should I really check off all the things that have happened at any time in the broad expanse of my entire health landscape?

I decide to just check the boxes that I have seen a doctor about, or that have clearly happened more than once.  I am afraid if I pull out the stops, and tell every last detail, the first impression my new doctor will have will be to pull out a big red stamp and mark the outside of my new medical chart in bright, bold, capital letters, “hypochondriac.”  I don’t want this new doctor to put me in the same category as the first doctor who actually called me THAT about five years before lupus was finally diagnosed!

The doctor will see you now

The doctor will see you now!

The doctor will see you now!

Soon, I have completed and reviewed my answers, and signed the forms and handed the clip board back to the receptionist.  I feel just like I have finished a mid-term exam in college!

She says politely, the doctor will be with you shortly.  I muse to myself that the forms took almost an hour, and that I will probably spend less time than that with my new doctor today.  This encounter, will be an adventure, as I open this first page in the new relationship with my new rheumatologist.  I hope the relationship will develop with effective communication, with a large dose of mutual respect.

The smiling receptionist returns through an open door into the lobby, announcing triumphantly, “the doctor will see you now.”

Unmasking All Lupus Symptoms – New LFA & GSK Campaign

New Lupus Symptoms Initiative

Photo by Lupus Adventurer © 2013The Lupus Foundation of America and GlaxoSmithKline (GSK)  have partnered in an exciting new lupus awareness campaign using the slogan, “it’s time to unmask all your lupus symptoms.”  I first noticed information about this on the LFA Facebook Page.

Some outstanding new patient-focused resources are available at http://www.lupuscheck.com/index.html to help  encourage patients to share all their symptoms with their doctors.

Here is a sample of discussion readers will find on this new awareness site:

“With systemic lupus erythematosus (lupus), symptoms that may not feel like your lupus can be important, too. Some may even indicate organ damage.”

Resources include links to a TV commercial, a form for patients to use in tracking and communicating symptoms with their doctors, and a link to sign up for a free lupus journal.  The journal request process asks for contact information, mailing address and a few basic survey questions GSK can use for statistical reporting.

Great new resources:

Commercial on YouTube:

PDF Form and checklist for tracking lupus symptoms:

http://www.lupuscheck.com/pdf/The_Lupus_Checklist.pdf

Link to complete survey and ask for a free lupus journal:

https://www.lupuscheck.com/registration.html

Other resources:

The site also includes information about two other important areas of emphasis important to lupus patients: the patient experience in communicating with caregivers and family (including important results of a related survey,) and listening to your body to notice possible symptoms.

Two more excellent resource pages cite important statistics and summarize information reported from a recent survey:

“Data from the 2011 National Burden of Lupus survey funded and developed by Human Genome Sciences and GlaxoSmithKline. This survey included 957 people in the lupus community—502 people who reported being diagnosed with SLE, 204 supporters (family members or friends) of people with lupus and 251 rheumatologists. Data on file, GlaxoSmithKline, 2011.”

http://www.lupuscheck.com/the-patient-experience.html

52% of patients with lupus report they minimize their symptoms when they talk to their physicians.

72% of physicians are unaware that patients tend to under-report their symptoms.

http://www.lupuscheck.com/listen-to-your-body.html

87% of people with lupus say they downplay symptoms to avoid upsetting their families.

More about this campaign

Go to the Lupus Foundation of America website or see the LFA Facebook page for more discussion and to show that you “like” this joint LFA/GSK effort.

http://www.lupus.org/webmodules/webarticlesnet/templates/new_empty.aspx?articleid=5105&zoneid=99

https://www.facebook.com/LupusFoundationofAmerica

Lupus, Benlysta and a little browsing with brunch

This morning was a repeat of many Saturday breakfast brunch rituals.  Today it was omelets, bacon, toast, homemade plum jam,  strawberries and bananas with coffee.  I really enjoy sleeping through half the morning each Saturday, but then I get up mid morning and usually make a hot brunch for everyone in the house.

Before our daughter and son-in-law came to live with us, breakfasts usually just included my husband and me, but these days, it includes them as well.  We often enjoy a chatty social time during the cooking, and at last the cook (me) gets the last, best, fluffiest omelet — when the skillet is finally well seasoned and everyone else is fed.  So, now I sit down to enjoy the fruits of my cooking and a little browsing with brunch.

Benlysta Twenty-Two Month Update

It is time for an update on my Benlysta treatments, since yesterday was month twenty-two in my treatment.  However, the last infusion almost didn’t happen, after nearly sleeping the day away in lupus exhaustion and fatigue.

Yesterday began with a start, after awaking from a dead sleep in the quiet house.  It didn’t seem like morning at all!  What time was is?  Groping through fogginess to find a watch on the bedside table from the night before, the startling realization shook me that it was 12:15 p.m.  The morning was gone and it was lunch time,  and sudden panic and urgency swept over me, while a feeble surging trickle of adrenaline was coaxing my body and brain into wimpy “fight or flight” mode.

Panic and Rush to Get Ready

With the realization that my Benlysta infusion appointment was scheduled for 1:00 p.m., only forty-five minutes from my waking moment, I jumped out of bed, stumbling as I faltered to get the waiting my sandals on my feet.  I was still dizzy with sleep.  A look in the mirror didn’t help my hurry.  My night sweats had turned my wavy hair into a rat’s nest of randomly angled mess, and there was no remedy but the shower!  Hurrying, with tooth-brush in hand and  mad splashing of water and shampoo,  within a couple of minutes I was out of the shower and drying.

It crossed my mind while holding my towel, that I could easily have slept right through the entire day — completely missing my infusion.  I was grateful for whatever had shaken me out of slumber, thinking, “thank you Lord!”

I was finally clean, dry and almost presentable, but still desperately needed clothes!

Quickly grabbing some necessary under-things, shorts and a favorite shirt, I dashed through a cursory grooming and took my morning meds with a splash of orange juice.  Grabbing my purse, I jumped in the car and realized my heart was racing with urgency.  It was now 12:55 and I was very late, but still determined.

Late, but determined

Photo by LA's Daughter-in-Law © 2013I pondered that we had postponed my Benlysta infusion last week, so that we could travel out-of-town to visit family.  I didn’t want to postpone the Benlysta another week!  My joints were already reacting to the resurgence of those little nasty Blys proteins that confuse my wayward B-cells.  I really wanted Benlysta soon to blast the increasing Blys population and quiet my Lupus back down again.

Calling up the hospital cancer infusion center while I headed for the freeway, the gal put me on hold for over ten minutes.  By the time we finally spoke, I was almost halfway there.  She was kind about my tardiness and told me to keep on driving.  Arriving twenty minutes late, they quickly processed me and a nurse promptly whisked me back to the infusion room.  Soon the powerful biologic drug was dripping into my vein and on its way into my system to once again fight my lupus.

Update on Benlysta’s Effectiveness

August  2013The Benlysta does its thing well, and has been greatly moderating my lupus.  My CNS lupus involvement remains subdued and quiet, my fatigue is greatly reduced, and my liver has remained symptom-free.  Minor symptoms of lupus — discoid rashes, mouth and nose ulcers, arthritis and bouts of milder fatigue are still present, but my overall physical strength and health are continuing to build up, as the lupus has continued to stay much quieter over a long period.

August will mark my two-year Benlysta treatment anniversary.

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