One Patient's Positive Perspectives

Posts tagged ‘SLE’

Lupus as a business travel companion

WP_20140904_10_07_22_Pro

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

WP_20140904_10_15_18_Pro

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.

WP_20140905_15_17_10_Pro

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.

WP_20140906_13_32_48_Pro

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.

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!

bfmonarchondaisy

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.

biblical perspectives

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!

cc

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!

imagesEQBWA6L3

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.

 

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.

xx

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

xx

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?

http://www.calumo.com/blog/wp-content/uploads/2012/10/forgot.png

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.”

The National Data Bank Research for Lupus

Research that makes a difference

This evening I finished an online survey about my lupus.

For several years, I have been participating in a research project conducted by the National Data Bank for Rheumatic Diseases.  The majority of the world’s current lupus research is conducted in research hospitals and large research centers.  However, this NDB  Lupus project  follows Lupus patients who are “in the community” and who receive their treatment from their own local family doctors and rheumatologists.

Twice each year I answer a series of detailed questions.  Occasionally, I have received a phone call from one of the researchers  at the National Data Bank for Rheumatic Diseases.  They were very interested in talking to me, and getting my personal input as they followed up on a new development or change in my health or treatment.

After finishing tonight’s online survey, it ended with a summary of my lupus status from 2007 through 2011.  I was clear when my remission began ending, with an abrupt change in direction in the summer of 2009.  That summer, I began managing the affairs of my elderly father with advanced dementia.  I traveled weekly between August and October going back and forth between my home and the state where he lived.  After his 2 month hospitalization, I sold his house and eventually moved him nearby to a residential dementia care facility in my city.  The graph shows as the low point in my lupus activity unmistakably!

NDB Lupus Research - My Results

NDB research is concerned with important issues for people with SLE: which treatments are most effective, symptoms, side effects and long term-outcomes. In addition, they are interested in medical costs, quality of life, ability to work and function, price of medications and the extent to which medical treatments actually improve people.

NDB research adds a human touch to the important basic science and immunology work performed at university centers.

NDB performs its research primarily by getting information from people who have SLE.  They do it by mailed questionnaires or secure online web forms.

If you have lupus, they need your help.

Click here to go to their web page to learn more or sign up to help…

%d bloggers like this: