More Than the Sum of our Parts

Sometimes I like to think of my immune system as a totally souped up race car (with inflammation stripes down the side, of course). It burns out fast, but man it is impressive while it is going. Other times I think of it as complete bodily anarchy with my cells alternately giving up and staging mutiny complete with tiny torches and microscopic pitchforks. Have a vivid imagination. In either case, this stems from the knowledge that as Lupus sufferers, we are carrying around an internal conflict and for every one of us, it is different.

Results of a study about how we think of Lupus and why it matters were released in May. I downloaded the study and it made me want to contact Dr. Joan T. Merrill, the lead researcher, who as described as having  ” actively wrestling with complicated treatment decisions for patients with SLE in Oklahoma.” She is wrestling with it; which means she is really thinking about it and making decisions for each patient. Three cheers for engaged doctors and researchers. They are the ones to make all of the difference. The study comes to this rational, logical conclusion (if scientists come to conclusions, I am never sure on that):

“Not all patients who share a certain organ involvement are going to be optimally treated with the same medicine at the same dose.  Some may need a combination of treatments; others may not need so much.  A better understanding of those variables can be made, in part, by an improved classification of lupus. This would allow better results for more patients and avoid unnecessary toxic combination therapies for others. This is exactly where the field of lupus needs to go. Thinking of lupus as a subset of arthritis isn’t going to get us there. The time has come for a more rational approach to selection of therapy than treating lupus by the organ.

from: Nature Reviews Rheumatology, 11, 385–386, (2015) doi:10.1038/nrrheum.2015.61, Published online, 05 May 2015

We are all different and we all have to be treated that way–even when we have the same symptoms. Rather than treating our skin separately from our kidneys, and looking at our lungs in isolation from our hearts, the study suggests looking a whole patient. The single person in the blue paper robe on the table in front of each doctor. It is inefficient. It will mean research is slower-going, but the right thing to do is to treat the patient not the collection of symptoms. Having been called “the skin lesion in room six,” I am elated to be thought of as a whole person. This recommendation makes me happy from my head to my toes and everything in between.

If you are as interested in Dr. Merrill as I am, the Lupus Foundation has an audio interview with her here. She is their medical director!

Tracking Lupus from Both Sides of the Stethoscope

I was surfing Facebook this morning and I came upon a posted video from Lupus Foundation of America (LFA) called:

LFA-Real(tm) System is First-of-its-Kind Tool to Monitor Disease Activity

This caught my attention because this is more than a tool for physicians. The system has two parts:

  • A doctor’s assessment of a patient’s lupus disease activity.
  • A patient’s assessment of their lupus disease activity.

The idea is that the assessment on both sides of the stethoscope can be done quickly–and it can track disease over time.

I have had two experiences with tracking and assessment, and to be honest friends, they have kept me from going to the doctor for a couple of months now.

When I discovered a symptom tracker called Symple, which allowed me to track my daily symptoms and also the factors that might cause them (lack of sleep, vitamins, stress, etc.) I was elated. I tracked faithfully every day for more than a month. When I met with my rheumatologist, I showed her my data, explained the app in three sentences or less and offered to email the report Symple created from my tracking. She could not have cared less. She barely glanced at the screen. That was the end of the story. I was crestfallen because I thought this was awesome. In my 20 minute office visit, I can’t convey all of the pain and suffering over a month, three months, six months. And if I could I am CERTAIN it would sound worse than I want it to. The app, however is an honest, accurate assessment over the course of many days. This body of data takes into account the good and the bad days, and what is influencing them.My doctor didn’t see it that way. I don’t feel understood. I feel prescribed to. You can check out Symple by clicking here. And by the way, it is free.

Not too long ago I got really sick in a weird, Lupus sort of way. I had stomach problems, I was achy and miserable. I knew I didn’t have the flu. I suffered for a while and then out of nowhere I got hives. This is my Lupus nemesis. I spent years suffering from hives and sinus infections before I was diagnosed. It was awful. Once I was diagnosed and I started taking Plaquenil, the hives went away completely–for years and years. Until that day. I decided to go to see my primary care physician–in case it was the flu or something. I got a doctor filling in for mine and she was great. She listened. She was informative, she ordered a TON of blood work. A week later, when it all came back normal. I talked with her about it. I was still feeling miserable and my legs were covered in hives and here she was saying: all your blood work is normal.

As a lupus patient, this is something I struggle with. I want an actionable answer at all times. And you know what, there isn’t always an action to take.

Oh I'm sorry. Did it look like I zoned out?  I was just picking out a wall to bang my head on.

Oh I’m sorry. Did it look like I zoned out? I was just picking out a wall to bang my head on.

I said thank you to the doctor and said, “I guess there is nothing left to say–I feel miserable, but according to my blood work, I am totally fine.” She stopped me there by saying: “No. You have Lupus. It doesn’t mean you aren’t experiencing symptoms.”  I am sure I sat there staring at her for a moment as I imagined repeatedly banging my head against a wall. That was my last visit. I have no plan to go back to either doctor unless something awful befalls me, because seriously, what is the point?  What is to be gained? Other than massive medical bills and more frustration (which leads to more symptoms).

Maybe LFA-Real will make a difference in this. If they can track what is a flare and what is a chronic symptom from a patient and match that with a physician’s observations and the test data?  I am skeptical, but hopeful.

This is in the beginning stages, like just about everything with Lupus, but the system is free and open to use for everyone (Thanks, LFA).  This System, which includes the development of the tools used to assess, and lots of input from patients and professionals alike, will be unveiled this year and you can watch the video by clicking here.

Keeping an Eye on Plaquenil

I really like my eyes. I don’t mean their shade or their shape, or their outstanding ability to bat eyelashes or convey emotion. I mean my actual eyes and their magnificent way of letting me experience the world. It’s because of this love that I am always a little extra concerned about taking Plaquenil to treat Lupus.

Plaquenil was the first and for a long time the only drug used to manage Lupus. As I understand it, it is what stands in the way of my condition progressing to more serious organ involvement. It is an important tool in the fight against Lupus, but using it does not come without risk. Over the course of time, Plaquenil can become toxic and damage the retina. If it is unmonitored, it can leave vision impaired, or even cause blindness.  I would like to keep my eyes functioning as long as possible. I am not sure what my quality of life would be like if I had, say,  a healthy liver and no eyesight. I would prefer not to find out.


Jeepers Creepers, this is a mighty close look at my peepers.

Right after I was diagnosed, my (super fantastic) dermatologist sent me to the pharmacy to pick up Plaquenil and to an ophthalmologist for a visual field test. I was armed with a note for the ophthalmologist written on a prescription pad. It said: Ask her about her diagnosis story. Its good.

Within five minutes of handing that note over to the ophthalmologist, I learned that she too has Lupus. We did that thing that people with Lupus do when they meet: Do you have…?  Have you ever taken…?  What do you think about…? Right after that, I learned that she doesn’t take any medication to manage her condition. As soon as that left her mouth, she tried to grab it back. She even told me a cautionary tale about a woman she went to medical school with who also didn’t take any management drugs for Lupus and so she died at 30 (sidebar: I have a host of stories people have told me about Lupus over the years that can be summed up with: “it was awful and she died.” People are really thoughtful.). What her concern boiled down to was masking symptoms rather than treating the disease. However, dealing with symptoms is all we can do, at least for now.

Which brings me back to Plaquenil. Have you heard that there are new guidelines for dosing it?  I was surprised to learn that the dosage should be based on ideal weight for a person’s height—not their actual weight. For me, this means I am taking more than I should be taking according to the new dosing.  I am not sure about you, but prednisone, Plaquenil’s Lupus-treating bedfellow, can swing my weight tens of pounds before I can blink, so having dosages not tied to actual current weight is good news. It simplifies things; or at least it should, once I talk to my doctor about it.

You might be thinking: “Look, In The Lupus lady, you should just trust your doctor to dispense appropriate medication.”  If I heard you saying that, I would think that you either don’t have Lupus (or another tricky autoimmune disease), or you have one outstanding medical team.  Either way, good for you!  For the rest of us trudging through this achy maze, the need to share information on experiences and diagnosis and treatment. I offer up what I find to you (and your doctor) because part of having a disease that is a mystery is some responsibility to educate people—even our physicians.

Of course, once we learn something new, the first thing to do is to discuss with your rheumatologist before making any changes so you can make a plan. Part of that plan should be reminding our ophthalmologists that Plaquenil is toxic and should be monitored.

For your consideration, and discussion with your doctor, the new recommended dosage is no more than 6.5 mg/kg/day, using the standard known as “ideal weight,” which factors in height. For women, the ideal weight is 100 lbs for 5 feet, plus five lbs per extra inch of height. For men it is only slightly higher at 110 lbs for 5 feet, plus five lbs per extra inch of height. Currently, the average dose of Plaquenil is 200 mg. twice a day.

You can read the source documents about the new Plaquenil dosing guidelines for yourself by clicking here.

You can also see what other Lupus bloggers are saying about Plaquenil and vision here: One outstanding Lupus blogger tells all about her Electroretinography, or ERG. An advanced test that measures retinal changes and health. This is especially important for people on Plaquenil. In case you are squeamish, I will warn you in advance, there are pictures. Visit, Despite Lupus to read more.

When you’re done reading, get your vision tested by a specialist, talk to your doctor about the new dosing guidelines.

Be well.

In the Lupus

PS—in writing this blog post, I have taught my computer the word “Plaquenil.” Ugh.

The Liebster Award & Eleven Great Blogs I Love

lieber-award has been nominated for the Liebster award. Woo Hoo!

That means someone is reading my blog—and they like it! I am happy (and relieved). Seriously though, it feels great to be acknowledged by others—especially ones who have such great blogs.

The Liebster Award is All About Sharing–facts about me, questions my nominator posed and also, other blogs that I think are great! Visit them, won’t you?

This is an award that is nominated by bloggers for other bloggers to help people build their followers base. I was nominated by Jessie at Nitya Nata. Go visit her site and marvel at her insight!!

11 Facts about Me:

  1. I have Lupus. Phew. Now that that is out of the way….
  2. I consider myself a really private person—and here I am telling anyone who wants to read it J
  3. My home is my sanctuary. There is a calm peacefulness there that I cultivate and that I crave when I am away.
  4. I have an extreme case of wanderlust. I love to travel and adventure be it near or far.
  5. I have two brothers that I think the world of. Both of them have influenced the way I see others and the way I interact with the world. They are also extremely funny J
  6. I have kept a journal since elementary school—which isn’t so unique. About two years ago I decided to part with some of them, which feels like a major accomplishment for a memory collector like me.
  7. I want a puppy. Actually, I want two, but I would settle for one.
  8. I despise blazers. Even the word “blazer” makes me itchy and uncomfortable.
  9. I have completely changed careers twice in my young(ish) life and I plan to do it at least one more time.
  10. I have a soft voice and a big smile. I use both often.
  11. I believe in the power of the pen (or the keystroke). My new year’s resolution this year was to write something to release into the world at least once a month this year. SO far, so good.

11 Questions for Me from Jessie at Nitya Nata

  1.       What do you imagine your spirit totem animal is and why?

Hm. I have been thinking hard about this one. If you would have asked me last week, I would have said a dog because I am fiercely loyal and protective of the ones I love. But l read the Buddhist quote below, and upon deep consideration, elephant fits like a glove. They have long memories, deep connections, they never forget anyone (good or bad), and sometimes they like wandering alone.

“But if you do not find an intelligent companion, a wise and well-behaved person going the same way as yourself, then go on your way alone, like a king abandoning a conquered kingdom, or without cares like a great elephant in the deep forest.” (Dhammapada)  


2.      If your life had a theme song what would it be?

Who are the People in your Neighborhood from Sesame Street. It has been my theme song since I could sing. Long before I could express my deep love of civics and communities, I sang along with glee about “the people that you meet when you’re walking down the street each day…”


3.      If you could cast someone to play you in a film remake of your life, who would it be?

Lauren Graham (Lorelai from Gilmore Girls). She is a feisty brunette with a whip smart sense of humor and an endless host of pop culture knowledge, like me. Come to think of it, maybe I would try to convince Amy Palladino, the show’s creator and writer, to take the role instead.


4.      What is your hidden talent that you would share if you could?

Few people know this, but I know all the words to the Swedish Chef song (from the Muppet Show). My mom taught it to me. I don’t get to sing it enough. Seriously though, I make it a point to share my skills and talents with people. My thought is, if I have something that can help someone else, I need to share it.


5.      What is your biggest fear?

Deep ocean water; I always scare the bejesus out of myself thinking about what I can’t see under the water and how gigantic it could be. And more practically, I am always afraid of Lupus looming over my future. I don’t like the idea of not being able to completely take care of myself.


6.      Why do you blog?

Started because with a disease like Lupus, there are so many clinical unknowns, but the more you talk with people who have Lupus, the more you realize that we have a lot of shared symptoms and shared experiences. It took me a little while to find my voice with Lupus. When I was initially diagnosed, I couldn’t find someone like me to read along with, so I decided to be that person for other people so that we can all be smarter, healthier, and more encouraged together.


7.      How do you think others see you? How would you like others to see you?

I think others see me as serious and having my act together in all instances, which of course is patently untrue. I just have an exceedingly calm exterior and a very prim strand of pearls. I would like people to see me as strong, smart, and kind.


8.      If you met yourself at a party, do you think you would be instant friends, or it would take time to get to know you? I would like to think so!


9.      Who would you most like to meet, alive or dead, from any time?

Margaret Mead. I identify with her as the ever vigilant observer and her belief in the power of people to make change in the world.


10.    What is your favourite thing to eat and drink?

My favorite thing is a hot cup of earl grey and a crisp little madeleine. It is instant comfort and so tasty.

  1. What is the next big thing you want to achieve in your life?

I want to make some sort of impact on the Lupus community—I am not sure what that will take the form of yet, but I am working on it. I am also hard at work on a degree; circumstances got in the way when I was college age, so here I am back at it.


Eleven Outstanding Blogs I  Want to Nominate:

  1. Triumphant Wings  because of the generosity of knowledge that the author exudes.
  2.  My Experience With Lupus-because the writing is good—and the tags are better (I was so happy to see among them Work Sucks and WahWah). And also because she is brave enough to talk about the hard stuff, like love, and children and the personal aspects of life with Lupus.
  3. Lupie Thoughts- because of the succinct way the cartoons and little quotes talk about life with Lupus.
  4. Waltzing with Whims, because of this line: “I hate being sick, I hate needing help and I hate having to ask for it. Yet I live with lupus, which means I am sick and need help and thus must ask for it.” Amen, sister.
  5. because she too measures treatment days in vials.
  6. And this tough cookie: alleemaeauthor
  7. Gallivance quenches my wanderlust.
  8. Heartkindling is a renaissance blog. I like that there are hectic head and hectic hands categories 🙂
  9. Sunnysleevez sun protective clothing that looks cool. This makes me so happy
  10. Saramzak – This blog features the artwork of the sublimely talented Sara M. Zak.
  11. thebarefootbaker You can almost smell the goodness baking while you read!

And a bonus mention: unhurriedchristmas This is my other blog, and I love it.


Here are the Liebster Award Rules:

The Liebster Award is awarded to bloggers with under 200 followers to try to promote their blog a little and also bring together a community of bloggers. The rules of the competition are as follows:

•The nominated user must provide a link back to the person who nominated them.
•Provide 11 facts about yourself.
•Answer 11 questions sent by the person who nominated you.
•Choose 11 more people and ask them 11 questions.

3 Days Until the Steroids are Over & Life Can Begin Anew

They'll be back...but hopefully not too soon.

They’ll be back…but hopefully not too soon.

Plans! I had such PLANS! It was going to be great. This blog–in the–isn’t that a great name? I picked a theme and a look (and I was not quick about it) and I decided that it would be two things:

1. Honest about what it is like for me to live with Lupus.

2. In The will be what it sounds like–a place to stay in the loop about what is happening with in the world of Lupus–from research to fundraising and every single thing in between.

Unfortunately, before I could get it all together and– abracadabra–make it a great site, Lupus struck me down. Hard.