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.

What Does a Lupus Flare Feel Like?

Someone just asked what a Lupus Flare feels like and I answered:


It Feels Pretty Damn Bad.


Here is what the tiny print says:

Imagine having the flu and then falling down a flight of stairs. Now imagine that the medicine you are taking to feel better makes your heart race, head ache and your emotions rage. Now imagine your doctor can’t help you and some people don’t believe you don’t feel well. Now add the responsibilities of life, the frustration of limitations on what you want to do and the guilt of having to have everyone in your life make concessions for you. Lupus is the worst..


What does it feel like for you? Post a comment or follow on Facebook and talk to me there!

Stand Up for Yourself.

I don’t know what it is about me, but when I feel like the masses are being slighted, I feel compelled to take up their cause and fight. I call this my inner Norma Rae. Have you seen that movie from the late 70s? The one where Sally Field starts a revolution of the textile industry by standing up holding a big, bold sign that says “UNION” on it?

It was hard. It was unpopular. It causes trouble at home and at work. But it’s the right thing to do, so up she goes. Sign over her head. And that leads to a revolution. Or at least that is how it goes in the movies.

Standing up. We all have to do it.

Standing up. We all have to do it.

The last few days have been Norma Rae days for me. I am sure I didn’t start a revolution, but I am also sure that the doctor who got me so wound up will at least think of my face and hopefully my words the next time someone shows up swollen, aching, and desperate in the name of Lupus. I have heard of people having amazing relationships with their rheumatologists. The kind of doctors who head up collaborative care among doctors to get patients well and thriving. But hearing about it is where it ends for me. I have a stand out primary care doctor and the kind of dermatologist that you could trust your life to, but I have never had a rheumatologist to write home about. The one I started seeing recently though, simply takes the cake.

I started seeing my new rheumatologist a few months ago when I got a new health insurer. We didn’t totally hit it off, but it wasn’t too bad. She was stand offish and she made a sour face when I showed her the vasculitis on my arm, but I am sensitive about that, so I chalked it up to my thin skin (ha!). When I left her office that first day, she sent me for blood work. Fifteen vials of bloodwork that took four sticks, the last one in my hand (ouch) to get ahold of. I thought I was going to pass out from sheer exhaustion. After that, there was a host of small things (mis-dosed medication, another wasn’t available, I had a reaction to a new generic, and so on) that fell like disease dominos and landed me smack in the middle of a flare–the most painful one I have had to date.

I suffered for a few days before emailing my doctor. She put me on a TON of prednisone and said to keep in touch. I took the ton of prednisone and it was like a beast was unleashed. In addition to a racing heart, I was so dizzy I was losing my balance, I was exhausted but couldn’t sleep. AND I WAS A MEANIE. At the prompting of my poor, suffering boyfriend, I went back into see the doctor face to face.

This is where the UNION sign comes in.You see, I had already had low expectations for this doctor caring for me. But when she met my sick, sad self with a pile of pain pills, and “Well, that’s Lupus. Eventually the flare will be over and you’ll feel fine.” I kind of lost it. I asked her to consider that people are more than the sum of their symptoms and test results. I told her we weren’t working out (like we were dating or something), and I did all of this while hysterically crying. In my experience doctors aren’t huge fans of tears. They are a more tightly laced lot. My rheumatologist looked horrified, but all I could think to myself was, finally I am getting through to her.  I eventually pulled myself together enough to finish the visit and head down for more blood work. I wasn’t done though because all of that went badly too.

I just finished my follow up email to her (this is how she prefers to communicate) and it reads like a ranty break up letter. Whether or not she even reads the damn thing, I had to say it all. I had to say it for every person who ever has to sit in a phlebotomy lab and get told, “You are a slow bleeder. I am going to have to stick you again.” I had to say it for every person who has had to sit down to dry their hair because showering took just about all of their energy. I wanted to say it for every person who didn’t have the strength to say it for themselves. I had to say it for everyone who has Lupus. 

God save the world when my hands don’t hurt too much to type.

PS: From the “well ain’t that a kick in the head” files, I just found this article from a few years ago: Real ‘Norma Rae’ dies of cancer after insurer delayed treatment

“The North Carolina union organizer who was the inspiration for the movie “Norma Rae” died on Friday of brain cancer after a battle with her insurance company, which delayed her treatment.”
Health Insurance. That is another post for another day. 

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.