One Patient's Positive Perspectives

sleepy sloth.htm

Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

Sleep/Rest Goals

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

Advertisements

Valle Luna Phoenix thEOGYSE51A recent “date night” found us sitting in a quiet booth while the waitress approached the table with a warm welcoming smile.  The Friday night dinner rush was over by our 8:30 arrival, and we had only waited a few minutes for our table.  Earlier, she assured us, was pretty zany at this local authentic Mexican restaurant we had all but forgotten about in recent years.

Tired some of our usual dinner spots, a return to the casual charm of this unpretentious eatery was long overdue.  The decor had not changed in the decade or two since our last visit, but it really didn’t need it.  Part of its southwest charm is the rustic feeling of being just over the border from Mexico, while really eating dinner right in the middle of Phoenix, more than a half day drive north of the border.

Valle Luna Phoenix BestWhile notably absent this evening, it seemed there might still be a faint echo of the mariachi band that had once strolled between the tables during dinner hour.  Amused while studying the menu for tummy friendly fare, a chuckle was stifled while considering my possible order.  Over the past few weeks, life had indeed served up a new menu of possibilities and adventures.

What would I like today with my lupus?  Well, how about a double dose of doctors, a lupus infusion, and a little Lumbar epidural on the side?  Seriously, the mild enchiladas, rice, and beans hit the spot quite nicely.  We enjoyed some quiet small talk over dinner while reviewing events of the day, and contemplated the long-awaited relief achieved by recent procedures that treated a nagging herniated disk.

Butterfly OrangeWith a total of three epidurals over the past few months, there was finally relief from the unwelcome companion of low back pain and leg muscle spasms.  After several months where the need for pain killers (tramadol) became increasingly frequent instead of episodic, it had become clear the chiropractic treatment we tried was woefully inadequate.  So, after visits to three different doctors there was a new personal record, as a little lupus treatment was sandwiched between some “minimally invasive” spine treatments.  Each epidural required a day off of work, sedation and a full day to rest and recoup.  With each of three treatments, the intense pain of sciatic leg cramps and low back pain subsided to more tolerable levels.

Mexican Valle Luna Phoenix thFDZH2OZYIt seems that Lupus alone is quite enough, but when other medical issues overtake a lupus patient, the combination of other medical difficulties and challenges can threaten to overwhelm even the strongest of souls.  It seems this is just the right season of life to be thankful for quiet lupus biomarkers, and be grateful for the blessings of relief from many months of intense pain.  Monthly Benlysta (belimumab) infusions have controlled lupus well.

Thankful to be out enjoying the “date”, and thankful for relief from pain, our Mexican fiesta, without the side dish of screaming pain was delicious!

thO8TMAXOELupus challenges our activities of daily living by giving extra burdens in addition to the normal routines of life. This is  a known fact every Lupus patient is intimately familiar with. Adding college this year to an already full schedule of home, career, and church responsibilities filled all of life’s moments to the maximum, and then some! Writing anything not part of a workplace or collegiate project has been an elusive all but unfulfilled desire.

At the first evening class session in January, the administrative dean spoke to us to challenge us to undertake honest introspection during the first six week session, and to contemplate any issues that would prove essential to finishing the program. His words were a challenge, even to the healthy students, and it was clear that there was would be very little schedule slack in the coming eighteen months.

th44IN4V61If lupus, career, and college were going to coexist without leading to a complete personal life crash, the concise guidance had to be enthusiastically heeded and applied. In setting a written schedule to include a weekly four hour class and the recommended minimum of about a dozen study hours, he challenged us, “something’s got to give”!

imagesCA07HE7GWilling to follow this seasoned advice, a few husband and wife chats to work out an acceptable weekly study schedule followed. The proposed weekly schedule was submitted the following week for the professor’s comments, and has been a guiding map to successfully reaching the halfway point in the program.

Those of you who have followed Lupus Adventures for awhile already know what the “something” is “that had to give”. While writing about these lupus adventures has been sparing, they have been challenging and worthy of pursuit. Hopefully, the last half of the program will have a bit more slack, and some of these adventures will begin to make their way back onto Lupus Adventures in written form.

Each reader here has a special place in my heart as you all share some aspect of this common adventure with me. Thank you so much for following and joining in by reading andHeart pages of book participating with your comments.

Thank you for reading!

th (4)

Benlysta Infusions Started August 2011

Every four weeks, month after month for almost four years now, three to four hours of each month has been devoted to an infusion chair.  Doing a little mathematics reveals that a little shy of 200 hours have been invested in Benlysta (belimumab) infusions for lupus.  As medical milestones of each month, they are helping subdue and manage the impacts of lupus.  Before lupus, the threat of quitting work due to early disability retirement loomed ahead, but the powerful work of this relatively new biologic drug reversed that.

With the return of greater ability to enjoy challenging adventures, quality of life is improved.  Intensity of lupus signs and symptoms have dramatically decreased over time, although the benefits were slow to show up in the first few months.  The first few months showed little change in lupus severity, but during the next few months that followed, symptoms decreased, pain lessened, and flares began to be shorter and less frequent.  During the second year of taking Benlysta, overall health and strength gradually improved.  Now, after almost four years, the infusions continue and keep lupus in manageable check.

imagesOVOE762VTwo noteworthy observations about effects of a Benlysta monthly treatment cycle:

  • Signs and symptoms of lupus seem to increase during the week before my infusion.
  • After Friday infusions, extreme, bone-tired fatigue lasts through each weekend.
  • Immune system remained strong, if not better

Benlysta may be a great option for many lupus patients, may be just what their doctor ordered!  As for me, I thank God daily for the help and control of my lupus it continues to give.

insurance-claim-form

Separating the Injury Claims

When a lupus patient has an auto accident, work comp injury, or some other personal injury where an accident insurance claim may be involved, sorting out treatment and claims can get pretty tricky.  Personal experience with these type of insurance claims provided some perspectives about working with doctors to sort out each new injury, and distinguish it from previous injuries and chronic illness.  The most recent auto accident that happened makes dealing with several issues fresh all over again!

Years ago, two different injuries resulted in insurance claims.  First, an auto accident followed a few weeks later by a fall down stairs at work.  Communication was the key to sorting out the differences between injuries.  Now, a recent auto accident was followed by a trip and fall at the shopping mall, and the same approach is needed once again.

Granted, with auto-immune illness, there are always many days with pain and discomfort, but new injuries seem to make coping even more difficult.   Day by day it has taken patience through the recovery, meanwhile remembering to ask God for the grace to be able to refrain from too much grumbling.  This too will pass, and the Bible says that the rain falls on everyone, so the storm becomes a little personal.  The new traumas also caused lupus to flare for several weeks.

Because of ongoing medical problems from chronic disease, communication with a doctor after a traumatic injury is very important.  Providing very complete, specific, and accurate information helped doctors and employers understand new symptoms and distinguish accident-related time off work.  Although several past accident injury claims were unfortunate, a few personal kernels of reality and wisdom emerged from the experiences.  While clearly not legal advice (which would be extremely unethical for this non-lawyer to provide), these personal observations may give some helpful insight to others patients with chronic illness who are facing a similar accidental injury situation.

A doctor will finally understand it is lupus

Communicate Well with Your Doctors

Three foundational, if not simplistic, realizations:

  1. Only medical problems clearly a result of the accident injury were covered by any of the claims.
  2. Unchanged pre-existing medical problems were not part of the injury insurance claims. (Obvious but worth saying)
  3. Flares of of pre-existing medical problems clearly triggered by the injury were able to be included in the claims, but only to the degree this diagnosis was included in medical records statements that supported how the autoimmune illness had worsened after the accidents, and because of the accidents.

Four conversations throughout various stages of recovery that it helped to chat with the doctor about:

  1. Asking what percent the doctor thought recovery from the first accident was reached, right after the second accident happened.  This helped establish a milestone in the treatment that we would work our way back toward during recovery from the second accident.
  2. Asking the doctor about how they thought injuries from the second accident were different than the first.  It helped when the doctor compared and contrasted between both injuries, and this gave clear information to use talking to both insurance companies.
  3. If the doctor doesn’t mention the idea, suggesting the concept to the doctor of a “window” in the recovery from the first accident while the second accident recovery was in progress.  This helped work with both insurance companies to make clear agreement about who was paying for what and when.  This helped the first insurance company know what to expect, and to realize they would be resuming responsibility for medical treatment costs after the recovery milestone was reached.
  4. Asking about total recovery in percentages after resuming the treatment just for the remaining first accident injuries, helped keep things straight with the insurance company.  Ongoing conversation about status of recovery with the doctor and claims adjuster helped keep everyone’s expectations and timelines clear.
cc

June 14th is Flag Day – Happy Birthday, Sis!

After having a couple of previous injuries, three serious car accidents, a work comp fall down stairs on the job, and two slip and fall injuries, personal experiences helped clarify the impact of an accident injury on overall lupus condition and general health.  It seems that if both adjusters and doctors had not been part of the conversations during recovery, proving diagnosis of increased lupus activity due to the traumatic injury would have been much harder.  It seemed better for everyone to be involved in ongoing discussion about the degree pre-accident health had be reached.

Of course, with lupus or any autoimmune disease, there is no “back to normal”, but with good communication, it can become clear when near “normal” health was regained.  Each day, no matter what it brings, is a glorious new day to be alive, what ever “normal” ends up being.

Know Lupus Game My Score 100 PercentPlay the Know Lupus game online… and earn donations for answering awareness questions.

Try to get through both levels with 100%  It was fun, so check it out and spread the word to others to check out this fund lupus awareness activity at the Lupus Foundation of America site.

Play:  The Lupus Game and see if you can beat the challenge!

 

WP_20141129_15_16_32_Pro (1)Infusion day seemed a fitting event for experiencing Lupus Awareness Month with flare.  With the day spent in a circular junket around town, my little PT cruised from doctor to doctor for treatment for lingering problems from a recent car accident, and then to an annual Plaquenil eye check up.  With two hours to spare, I stopped in for manicure and a pedicure, and had an interesting discovery.Hair curls, manicures, pedicures but no lupus cures...

When the nail tech removed the bright purple nail polish, she noticed that the big toe nail had separated from the nail bed, but without any apparent reason such as fungus or infection.  It appears my big toe nail completely died, and the nail stopped growing several weeks ago.

The salon suggested that trauma during my late March trip and fall at the shopping mall killed the nail.  Perhaps while scuffing knees and straining the ankle, the nail bed base also sustained a hefty wallop on the edge of the cement step or the sidewalk.  The nail salon urged me to show my toe nail to the nurse while at the rheumatologist’s office for my monthly Benlysta infusion.

The verdict,  “Expect to lose the toe nail soon.”  Well, it seems the summer  fashion forecast lacks any nail vanity, and just in time for sandal season.  It will be interesting looking for closed toed summer shoes for a niece’s late July wedding.  What fun!

The infusion was the last planned stop of the full “medical” day.

infusion in handThe afternoon passed in the infusion chair with a monstrous accounting textbook perched on my lap and a fresh yellow highlighter gliding across the pages.

Eventually it was hard to pay attention to studying for my college class.  The friendly chatter of a couple of other patients getting RA infusions was more engaging than dwelling on the accounting formula, “Assets = Liabilities + Owner’s Equity”.  Without asking, it was clear they obviously didn’t want to chat about accounting!

No one does.  The reason is hard to pin down, but no one else seems to get very enthused about chatting about or otherwise dwelling on accounting theory, either!

%d bloggers like this: