One Patient's Positive Perspectives

Posts tagged ‘systemic lupus’

Lupus adventures through life’s stressful events

Hands of Woman Using Laptop Computer

Shut down a little early

Off to class, but not quite making it

A stressful event has just occurred, and once the dust has settled and the adrenal rush quiets down, next comes the inevitable question.  Will my lupus flare?  Traumas, losses and major life events have an effect on everyone experiencing them, but the impact can be more intense for someone with an autoimmune disease like systemic lupus.  Only time will tell, but I will do what I can to help prevent it.

Earlier this week, like every Tuesday night, when 5:00 p.m. arrived, the computer at work shut down a couple of hours ahead of normal schedule, and a current project file stashed into a waiting tote, along with cell phone and a note or two about calls to make from home the next morning.  atypically time conscious on Tuesdays, the quick dash to my parked PT Cruiser takes three minutes flat.  The seat belt “clip” sounds at 5:05 and soon the little PT  is off and rolling!

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Need gas before crossing town

On schedule, but alerted by a sound from the gas gauge, the little PT must first head off toward a gas station on the way to the outer loop freeway.  With plenty of time to spare for the stop, it feels good to be on schedule.  Soon we, driver and PT, are merging onto the highway, on our way across town for a 6:00 p.m. degree completion class.

The Bluetooth cell phone speaker rings on the visor.  My boss calls for a quick conversation about the status of a pending job offer to a prospective employee.  That done, thoughts turn to the leadership topics we have studied at school, and the joint presentation my group will complete tonight.  We are nearly ready to present it to the class next week, and just need a little more time after class to tweak content and coördinate our plans.

Silence, sounds and a sigh

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Still gripping the wheel

Leaving the radio off, the silent noise of my thoughts is plenty of company.  Up ahead, lanes are full and alarmingly tight with traffic.  Suddenly, the PT brakes must slam down very hard and fast, quickly stopping behind the forming traffic jam.  After a little controlled skidding,  we came to rest a safe distance from the car ahead.  The sighing thought forms in silence, “It is a good thing my little PT likes hanging back from the crowd of cars ahead, so there was room enough to make this urgent stop.”

The jarring sound of metal on metal instantly shatters the silence, and a millisecond later overwhelming force pounds through my body from behind.  Still gripping the wheel, startled and shaken, awareness shifts to assessing emergent issues in a mental checklist: 1) am I okay? 2) get out of traffic 3) how bad is it? 4) how is the other guy? 5) call 9-1-1.  By the time I got to the end of my checklist, I was in the emergency lane, out of my car for safety’s sake, leaning against the barrier, and put down the cell phone when I looked up at the other car and realized highway patrol was already on the scene.

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Grateful it wasn’t worse

A little bumped and shaken (okay, a lot), and very frustrated missing my college class, I was just grateful and thanking God it wasn’t any worse. Stinging, quickly tightening  muscles in my back, neck and arms made it clear that going to class was no longer in the evening’s plan.  After the officer pushed the man’s disabled pickup to the emergency lane behind mine, we answered questions and the officer returned to his patrol car with our licenses, insurance information and vehicle registrations.

Both drivers turned to cell phones to reach out to family, and in my call to contact my professor. The officer returned, offered to call paramedics for me, and held out a printed preliminary police report to me, and still holding the other copy in his hand, told me I was free to go.  I heard him turn the gentleman that hit my care and start what sounded like a more intense conversation.  I presumed to give him a traffic citation for causing the accident.

Back in the saddle, sort of

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Headed to emergency room

Back in the saddle, and merging back into traffic and exiting the freeway, the side streets seemed the most welcoming route home.  My house was only five minutes away, so after driving with much trepidation, arriving home was a relief.  I met my husband at home and he took me to the E.R. for a check up.  After my spine x-rays were reviewed they gave me a muscle relaxer (Flexeril) and instructions to take Ultram for pain.  I took the next couple of days off from work to rest and let my hurting neck and back recover.  The day after the accident, the man’s insurance company contacted me to assure me they were accepting full liability, and would take care of my car repairs, a rental, my medical expenses and any other impacts from the accident.

We are unable to choose what life or traffic throw at us, but we can do what it takes to care for ourselves once it does.  After a couple of days resting, I sat down at the computer and sent my two papers to my professor by email that were due to turn in the night I missed class.  While resting over the weekend, the next thing was to finish writing the last paper for my class that ends next Tuesday night.  The project presentation my team is giving on Tuesday was almost ready before my accident, so I am grateful we did not procrastinate on the project, so that I was able to fully rest when I needed it most.

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Let’s be careful out there!

The rental car will delivered early Monday morning, and then it will be back to work for me.  Life moves on, trauma or not, so we slide back into the groove of daily life pretty quickly in the wake of life’s bumps and bruises.  Perhaps because of the lupus, we can take these minor setbacks a little more in stride, after learning resilience from the stuff lupus throws at us on an ongoing basis.  Just like lupus, so too with car accidents.  We cannot pick the traumas and challenges we will face, but we can be grateful for what is good in our lives, and make the best of what is, without worrying too much over what we do not have or may have lost along the way.

And meanwhile, let’s be careful out there!

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Lupus as a business travel companion

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Portland-bound at 20,000 feet

Writing on a phone

A couple of hours ago I started writing on my windows phone from here in Portland, where I have been visiting for three days on business. Not yet comfortable with using the blog app in miniature, I couldn’t figure out how to save the nearly blank post as a draft. After getting to the airport and sitting down to finish the post, I realized it had posted as just a title and was my shortest post here yet.

I was surprised to even get some likes with just a title! That takes a lot of faith to give me thumbs up without it being written yet, sort of like getting an advance on an unwritten book. With that response it is worthy of finishing.

Writing in the Airport

Writing at the airport, on the runway and at the baggage claim

So, here I am finally writing it for real while I wait at the gate for boarding. When I flew out to Portland earlier this week, the plan included arriving plenty early ahead of the 3:00 pm start to the professional educational conference. My husband dropped me off early, and the morning was spent in transit.

Part of my advance travel planning always includes scoping out ground transportation options and street maps of the area I am visiting. With lupus arthritis it is important to consider things like how long the walk will be if I want to use public trains or busses to get to my hotel. Also, I try to plan not to arrive after dark in a strange city, and feel less vulnerable finding my hotel in day light.

Writing on the runway

Now on my plane headed home, we are waiting to take off on an oversold flight, and I was grateful to be the next-to-last person to get on the plane.

When I get home, I will finish and update this post, since I haven’t yet figured out how to save in draft.

Writing from baggage claim

Now with feet on the ground and waiting for my husband at the airport, I reflect on the challenges of travel with my auto-immune companion. Watching out for fatigue, skipping the night life … More later…

Writing from a phone, again!

Later, actually much later still using my windows smart phone, since my husband was rearranging the office and took the internet down while I was out of town.

This may end up my first unillustrated post in more than three years of writing… Writing on a mini app is one thing, but dealing with images that way is just too much for me.

Writing from home, sweet home

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View from the air over Portland

After trying to compose this on the fly (pun intended) it has become obvious that my home office is my most truly inspirational place to write.  No distractions, interruptions or half-constructed sentences.  So, with the Internet back up and my computer re-connected to cyberspace, now I’ll try to finish and go back and fill in a couple of details.

To attend a business law conference in Oregon, I flew out Thursday morning last week, and arrived in Portland by late morning.  I happened to meet the only other Arizona attendee at the airport, Andrea, and we boarded the train at the airport station.  Our lodging was diagonally across an intersection from each other, so we connected for several educational sessions and shared a couple of good meals during the conference.  After finding out we both have chronic health challenges, we coordinated a similar approach to our conference attendance.

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Court house and clock tower near my Portland hotel

Arriving with enough time to comfortably check into the hotel and grab a light lunch, we stopped by the conference registration table and arrived at the first session at 3:00 that afternoon.  While some attendees may enjoy night life and partying when they attend professional conferences, that’s just not a lifestyle that fits into my brand of lupus adventures.  When I travel alone, I pretty much stay in at night, and spend my days in meetings and evenings quietly in my room resting up for the next day’s demands.

The last night of the conference, my new friend Andrea and I enjoyed excellent lasagna dinner and home made gelato, all prepared from scratch by the chef in my hotel’s Italian restaurant.  The next morning’s classes began early, and we were done by noon.  The night before, I arranged for late check out, so I would not have to drag my suitcase around to my morning classes.  I had an hour to leisurely change into travel clothes and pack up before check out.

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Train crossing over the river on the way back to the airport

Trying to check in and get a boarding pass from the hotel lobby online ahead of my flight, I learned my flight was oversold, and would have to check in and get my boarding pass at the airport.  Setting out immediately to catch a train back to the airport, I started writing this on the small screen of my phone.  Clicking thumbs of text, started two days ago waiting at the at the train stop, with my feet propped up on my suitcase.  The return trip included a great view for snapping a quick shot from the bridge.

Throughout this business trip, my lupus and writing about this adventure joined my new friend Andrea as a trio of friendly travel companions.

Benlysta for Lupus Without Infusions?

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Benlysta (belimumab) for Lupus

 FDA approved Lupus drugs

Clinical trials are an incredibly important contribution to new drugs for lupus.  Before 2011, there had not been any new FDA approved drugs for systemic lupus in over 50 years.  Before that there were only three, aspirin, plaquenil and prednisone.  Now, with Benlysta, there are four.  New biologic drugs like Benlysta are constantly being researched and we will likely have more soon.  We all hope it won’t take another 50 years to get number five!  In the mean time, there are still things we can do to improve treatment.

using autoinjector

Using Auto Injuector

One of the drawbacks to Benlysta is the great cost for the drug and the infusions.  It is mixed following exacting rules before infusion, taking at least thirty minutes to prepare.  Living within walking distance from my new rheumatologist, I am also within each reach of the research arm of the practice.  The practice is participating in a handful of lupus related research trials, including some patients from the first Benlysta clinical trials.  The next chapter of my lupus treatment will mean a break in the monthly infusion routine.

What comes next?

autoinjector practice

Practicing self-injection

After having my last infusion a few days ago, in about ten more days weekly self-injections of 1/4 the amount of Benlysta will begin to replace monthly infusions.  The next couple of months will be spent participating in a clinical trial to test an auto injector that delivers Benlysta as a subcutaneous injection.  Last week, I had my training in how to use the auto injector and shot (wasted) a whole real dose of Benlysta into a fake “skin” device to prepare for my first self-injection.  The plan is to do the first and two of the other eight injections under the watchful tutoring of the research nurse, and the rest of my weekly infusions are at home.

Official information about the clinical trial

GlaxoSmithKline’s Phase II Open-Label Single-Arm Study to Evaluate the Reliability of an Autoinjector that Administers Belimumab Subcutaneously in Subjects with Systemic Lupus Erythematosus (SLE)

The primary outcome of the study is to assess the suitability of the autoinjector for self-administration of belimumab by subjects with SLE in real-life conditions. The study will assess the use of the autoinjector inside the clinic setting and outside the clinic setting. The study will also assess the safety and tolerability of belimumab administered subcutaneously (SC) via the autoinjector. Subjects will self-administer belimumab SC into the thigh or abdomen using the autoinjector device for 8 weekly doses. Subjects will return for a follow-up visit 4 weeks after the last SC dose of belimumab. All injections will be assessed by the investigators for success based on direct observation and/or the subject diary. A total of 118 subjects (treated with at least one dose of study drug) are planned to be enrolled in this study. The study will last through mid-2015 and is being done in these cities:

Gilbert and Phoenix, Arizona
Lansing, Michigan
Charlotte and Greenville, N. Carolina
Greenville, S. Carolina

autoinjection sites

Benlysta injection sites

Nearly foolproof auto injector

It seems like this will be nearly foolproof.  I am no stranger to “Sub Q” injections, after giving scores of them the old-fashioned way helping my husband with blood thinning Lovenox injections.  After a bed-side crash course in his hospital room a few years ago, I became a pro at using short-needles with pre-filled injections, and jabbing him in the tummy to help stave off the return of massive blood clots.  I stayed pretty calm doing them, so I have no apprehension about doing them with an auto injector with Benlysta.  In comparison, the new auto injector seems like child’s play.  Just like many other “Sub Q”  injections, it is injected somewhere either in a U-shaped area around the navel, or in either upper thigh.

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Making a difference

Fewer flares?

Because with the monthly infusions I tend to flare during the last week, it will be great to find out if evening out the dose to weekly injections will help prevent the recurring monthly flare cycle. I will be keeping a journal as part of the study, so look for updates here, too.

It is my hope that by my participation I will help decrease the costs of getting Benlysta to the people who need it most.  One bonus?  During my participation in the clinical trial, there is no cost for seeing my rheumatologist, lab work or the medication.  Also, at the end of the trial, there will be a small stipend coming to me of $5o for each in-office visit during the study.  There is always room in my wallet for a little fun money!

Lupus and seeking the simple blessing of good sleep

Sleep/Rest Goals

Seeking Sweet Sleep

Sleep should never be taken for granted, or pushed aside as a necessary interruption.  It’s merits are poorly underappreciated and pursuit of it can be elusive and frustrating.  Yet, when it arrives uncomplicated and complete, in enough depth to last the entire night, cherish it, be grateful for it, and thank God every time it blesses you with a night full of true rest.  Such was last night!

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Morning Arrived Sweeter

This morning arrived sweeter, fresher and with little morning fog than any recent morning in the past few weeks.  Night after night sleep was interrupted barely before it began, with pain and neuropathy burning in my legs, and even in my fingers, complicated with the remnants of pain from falling on my hip last year.  Nights in succession were spent moving back and forth between bed, kitchen, office and living room, trying in vain to find a comfortable spot, and hoping desperately for the relief of sleep.

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Meeting a Deeper Need

Yet, as each evening wore on into the small hours of the still black morning, eventually sleep would come in sheer exhaustion and weariness.  There is no book compelling enough to trade for the precious rest I sought, except perhaps the precious pages of scripture.  They, in their own powerful way offer a type of rest that sleep cannot touch, a type needed even more than sleep, meeting a deeper, soulful, ancient need.  They provide truth, words of life and pure rest to my spirit, and stay dear in the dark of a long sleepless night.

But, my frail, fragile, imperfect body still needs the rest of simple physical sleep.  For this sleep I have prayed, and for days the answer did not did not come until now.  Waiting, hoping, that the siege of insomnia brought on by sleep interrupting lupus pain would break, I prayed on.  Finally, the answer to this prayer came in the form of long hours of deep, mindless, dream-filled sleep.  A precious ten hours, one stacked upon the next until the tower of time reached the morning.  At last, sleep!

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Extra Hours of Sleep

Awakened in a start by my husband’s urgency, I selfishly did not mind that he had unintentionally slept through his alarm.  That meant the assurance of a couple of extra hours of sleep recovery for me!  Today marks the end of five days of intense morning brain fog, and the welcome blessing of waking to a rested morning.  Although long hours of sleep come with increased lupus joint swelling and stiffness, mental processes are quickly clearing of fog and the day promises to be a good one.

Today, my prayer shifts to grateful thanksgiving for the not-so-simple blessing of good sleep.

Psalm 63 6-8 Yellow & Purple Pix

 

 

Lupus Adventures Reader Survey

Please help with your answers

In order to help fine-tune the focus of articles to Lupus Adventures readers’ needs and interests, your help with a simple three-question survey would be great.  Even if you are not a lupus patient, or your connection to lupus is through a family member, friend or your work, please answer the first question.

Please choose the best answer for each question, and click “vote” at the end of each question.  As soon as you vote, you will see the survey results for that question.

Thank you!

Lupus Adventurer

Three-Question Survey

Your connection to Lupus?

How many years since your lupus diagnosis?

What was your age at diagnosis with lupus?

Thank you so much for your response!

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Your help is appreciated!

 

LFA’s Lupus Awareness Month Action Idea #1

Lupus Awareness Month Action Idea #1

LFA Awareness Action Ideas

LFA Lupus Awareness Action Ideas

The Lupus Foundation of America is in full swing with Lupus Awareness Month.  As a help to inspire Lupus awareness advocates, they have created a page with six interactive graphical links to lupus awareness Action Idea pages. Check these out at the LFA site! Click Here

I love having some new lupus awareness suggestions.

The ghost of lupus awareness past…

A couple of years ago my idea was to post a different full-blown blog article every single day in May.  My hunt for lupus awareness topics was kick-started by an amazing list of 30 lupus facts given to me by Kris Hoagland from the LFA’s national office.  The whole idea was born out of a great conversation between us at an Arizona lupus patient symposium earlier that year.

Challenged by lots of writing

Once I got into writing the posts, I soon realized it was a major commitment to keep them coming every day to meet my personal goal.  But, I was just stubborn enough to keep on going I was especially grateful for the list of facts as writing prompts.

The lupus facts got me going, and the positive reader feedback kept me going!

The idea of covering the range of lupus topics really challenged me.  Some of the posts required extra research to assure good quality.  The project helped me learn about aspects of lupus that don’t affect me, and that made me a better lupus advocate. The 2012 challenge meant a lot of writing, research and posting, but it was well worth it!

Lupus Awareness Action Idea # 1

Lupus Awareness
Action Idea # 1

Many of those posts from two years ago had surprising lasting appeal, and stay on the list of all-time most often read posts.  In fact, the #2 on that list is one you might want to read, too:  Living with Lupus Fact 22 – Not So Beautiful Butterfly Rash.

Last year, I started out the first half of May with a different “Lupus Blogger of the Day,” but got stuck at mid-month when life and lupus interrupted my plan.

The ghost of lupus awareness future…

This year, my plan is not so ambitious.  But, was once again prompted by great ideas coming out of LFA’s national office.  It may be a little circular in the logic category, but my idea is to include LFA’s six lupus awareness ideas in this month’s posts.

31 Action Ideas

31 Action Ideas

What Action Ideas did I find at the link that I am going to do?  For starters, I am going to register for a lupus walk, go to a lupus educational event on May 10th, and check out the long list of 31 actions they suggest.  To find out what more of them are, you’ll have to go to their page to read more.

I trust this tiny adventure will be encouraging and helpful, and perhaps trigger a lupus awareness idea or two for you to try out for yourself.

 

Meet Toni Grimes, an amazing Arizona lupus warrior

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Toni Grimes, Lupus Patient

It is my special pleasure to introduce you to a beautiful woman with a matching soul, Toni Grimes.  She is, in my opinion, the foremost lupus advocate and warrior in Arizona.  If you could meet her personally, after just a few minutes of pleasant and positive conversation, you would quickly begin to understand what an amazing person she is!

May 3, 2014 Scottsdale, AZ

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After many wonderful opportunities to meet and talk with Toni, and observing her tireless leadership in local Lupus Foundation of America (LFA) activities here in Arizona, I am impressed. She is creative, energetic and makes things “happen.”   Toni’s volunteer work was absolutely critical to the success of our local Walk to End Lupus Now last year, and is the walk chair again for our upcoming walk in Scottsdale, Arizona on May 3, 2014.

The reporter that recently interviewed Toni for a local newspaper, wrote about the impact lupus has had on Toni’s life, and a bit about how Toni fights back against the negative aspects of lupus.   Toni served for 17 years in the military until suddenly being diagnosed with systemic lupus.  She retired after a collapsed lung and lupus nephritis sidelined her from service in Afghanistan.  She now works as a local Lupus Foundation of America support group facilitator, and is an active advocate for female veterans and a personal trainer for people with disabilities.

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Read more about Toni

I heartily recommend Shelby Slade’s article about Toni.  Shelby is a student at the Walter Cronkite School of Journalism and Mass Communication, and is now an intern at the Mesa Tribune in Arizona. She should be congratulated for her great job of research and conveying Toni Grimes’ encouraging story.

Please click here to read the Mesa Tribune article about Toni.

I think you may want to share Toni’s story with your own circle of contacts in the lupus community…

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