Lupus Foundation

More Than the Sum of our Parts

/ dscherff2013 / Leave a comment

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

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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.

Dental Surgery: I just popped a piece of gum in my mouth and weeks later, here I am.

/ dscherff2013 / 3 Comments

Sorry for the absence, but I just popped a piece of gum in my mouth and weeks later, here I am.

Ten years ago I had a crown put on one of my molars. Three weeks ago, I decided to have a piece of gum rather than have a snack–one chew and out the came the crown. A trip to the dentist ended up in an appointment for surgery to have the tooth beneath the crown completely removed and a bone graft to eventually place an implant.

I should have known not to eat the gum. I am pretty sure it was my childhood love of grape Bubblicious that got me here in the first place.

So, surgery was no fun. In retrospect, there are some things I did well that made the situation better—and there are some things I could have done better. I am sharing them here in case they could help you too.

The Three Things that Made Things Better

I know there is no conclusive research on Lupus affecting dental health, but I suspect it does.

I know there is no conclusive research on Lupus affecting dental health, but I suspect it does 

3. Arnica gel and tablets. It is becoming something of an epidemic—Doctors and phlebotomists can’t find my veins to take blood or put in an IV. This was a particularly bad instance—five tries between both arms before they hit the kind of blood flow they wanted. I am thinking that people are a little too impatient—because a few hours later, I am a mess of redness, aching in pain and then for days after covered in bruises. Nothing makes me less indignant about the bruises or the pokes, but in the aftermath, applying Arnica gel (I get mine at Whole Foods) makes the bruises dissipate quickly—which is good because the more I look at them, the more upset I get about having them.

2. Speaking up. I am pretty proud of myself for this one, even though it had mixed results. I made sure everyone knew I had Lupus. I made sure to tell them that the tourniquet was too tight (that took a plea to two people to fix) and I did not sit in the chair until I had eye contact with the doctor while I explained my track record with amoxicillin. I was also pretty clear that the little disc they used to try to warm me up (so they could take blood) was way too hot. You win some, and you lose some.  However, if you are a medical professional and you find yourself saying, “Let me know if this is too hot. I have gloves on, so I have no idea.” Just know that it is in fact too hot. I had three burn marks—on top of having bruises.

1. My boyfriend. Seriously, I couldn’t have gotten home, let alone gotten through this without him. After surgery, I remember giving the receptionist my credit card (ouch). I remember the car pulling out into traffic, and then I remember waking up at home three hours later. I am really, really bad at asking for help, and he has admitted to not liking the responsibility of being the caretaker. But I asked and he answered. He made sure I drank water, took medicine, and when I finally woke up and rejoined society, had plenty of soup to eat. If you are reading this hun, high-five for us!

Three Things I Should Have Done Differently:

3. Told my doctor. Well, if I felt like I had a doctor. I am currently a woman without care—but more on that later. I am switching insurance—because the two Kaiser rheumatologists on staff in my area aren’t going to cut it. So I didn’t really have a rheumatologist to tell, but once I do, I am going to be better about this. I think it will save me lots of pain in the long run.

2. Planned more down time. I am not sure if I can completely blame this on Lupus, or if it is just getting older—but really, I thought I would have surgery on Friday and be well enough to go into the office on Monday. While I did actually go in to the office, I wasn’t really well enough to do it. In fact, it has been 9 days since surgery and I am still not 100%.

1. And the most important thing I could have done differently, was to have read this article from the Lupus Foundation about preparing for surgery. I didn’t think that this “surgery” was real surgery. Here is the link: http://www.lupus.org/blog/entry/how-to-prepare-for-surgery-when-you-have-lupus

 

If you’re doing something that I could learn from, please post it. Until research catches up, sharing what we are feeling seems like the best way to suffer less at the hands of Lupus.