The poor pitiful mes.
The moaning about the pain.
The stories of how their life sucks. How hard it is. How nobody cares.
The stories of how they had to go to the emergency room because they hurt.
You know what?
Everyone on this earth hurts. No one is completely free of pain.
Everybody has some sort of battle they are fighting.
It’s true that not everyone lives with lupus, but it’s also true that not everyone lives with cancer, or AIDS, or the death of a child.
I remember something from when I was in high school, something I try to use as my guide every day. It’s a quote from Desiderata that says, “There will always be greater and lesser persons than yourself.” That is so true, not only greater and lesser in what a person has, but also in what they know, and in the what they battle every day.
There are battles much worse than this battle with lupus.
We don’t always get to choose our battle. I certainly didn’t choose lupus. But here it is. A part of my life. Every. Single. Day.
What I do get to choose is how I live with lupus.
Am I going to choose to whine about my situation? Or have a pity party each day of my life? Am I going to live my precious days in ways that are less than I want them to be? Am I going to sit around whining, when I can still do great things?
I may not have a choice in this disease, but I have more than a choice in how I live my life. I have the power to do what I want. To become who I want to be. To be happy, and thankful, and to find joy in everyday of my life.
Anything less gives my power to the disease. Anything less and I am letting something else rule my life.
But you say you have pain. So do I. I can’t remember the last day I had that was pain free.
So you say you have to take ten medications every day. I take twelve, but at one time I was taking twenty-eight different meds a day. And I am thankful for every one of them for they let me live to see another day, and they make this day a possibility.
No, I’m not able to walk three miles every day like I used to. No I can’t enjoy the beautiful beaches of the Gulf Coast that were once a big part of my life. No I can’t get down on the floor and play with my grandchildren. But I can walk to the kitchen, to my car, out to get the mail, and even to do a little shopping if I choose to. And I can go to the beach in the afternoon, or sit by the pool and read. I can pull my grandchildren on to my lap and read them a story, or sit at the table and play games with them. In my life, the CANS outweigh the can’ts every time.
I don’t wake each morning whining because of the pain. I wake each morning thankful that I am alive and have another day to do, to be, to enjoy.
As I swallow my medications I say a prayer of thanks for those who created them, and for the fact that I have them to help me through the day.
As I get in my car early each day, I get to decide what kind of day it’s going to be.
I have lupus, and I am blessed.
From the life and mind of Wanda M. Argersinger
© 2015 All Rights Reserved
The ACR (American College of Rheumatology) who formed the TLI (The Lupus Initiative) announced the award of a one-year, $500,000 grant from the Office of Minority Health (OMH) to expand its established, national education program by developing an evidence-based program model intended to improve health outcomes for people with lupus.
The award will help TLI establish a model to bring sorely needed education to health providers, as well as specialty care to patients living in rural and underserved areas who are suffering from lupus – a serious, complex chronic autoimmune condition.
The Lupus Initiative plants to work collaboratively within an established national network of agencies and organizations. “The model will allow for primary care providers to treat a person with lupus on their own, or co-manage with a geographically-distant rheumatologist, until an appropriate referral can be made. Additionally, we will focus on increasing the awareness of the people in these “silent spaces” about lupus’ signs and symptoms,” Sheryl McCalla, JD., TLI Project Director and ACR Senior Director, Collaborative Initiatives.
TLI is planning on expanding upon its existing infrastructure of partner organizations. This expansion should bring about one of the largest national formal collaborations of lupus stakeholders. The collaborative partners for this current grant include the following stakeholders:
- Alaska Native Tribal Health Consortium
- Emory University School of Medicine
- Georgia Charitable Care Network
- National Association of Chronic Disease Directors
- Southwest Georgia Area Health Education Center
- Oregon Area Health Education Center
- Northwestern University
- Morehouse School of Medicine
The Lupus Initiative is a multi-faceted education program led by the American College of Rheumatology. TLI provides medical professionals, educators, and students with evidence-based programs and easy-to-use educational resources to ensure the early and accurate diagnosis, effective treatment and management of patients with lupus, regardless of age, gender, race, ethnicity or socioeconomic status, so that they may potentially lead healthier lives.
The Lupus Initiative is funded in part by a grant from the U.S. Department of Health and Human Services through its Office of Minority Health. The Lupus Initiative is guided by experts in medicine, public health, academia, research, patient advocacy, and health disparities. For more information about The Lupus Initiative, visit www.thelupusinitiative.org.
From the life of lupus patient Wanda M. Argersinger
© 2015 All Rights Reserved
Temple University scientists make breakthrough in lupus research
On July 6, 2015, scientist at Temple University issued a press release about the research they have been conducting with regards to lupus.
This research, headed by Çagla Tükel and Stefania Gallucci, found that biofilm – or bacterial communities in the body – may be what is provoking the onset of lupus.
“Basically biofilms are these bacterial communities,” says Tükel, an assistant professor of microbiology and immunology at TUSM. “And when these communities are formed, they are very resistant to treatment. And actually what we found is happening with these biofilms is there is this protein called an amyloid protein. We think there could be a link between biofilm associated diseases and amyloid associated diseases.”
There is a specific protein of interest, an amyloid called curli. Tükel says curli is currently being treated with antibodies.
“We are thinking maybe the flares in lupus could be associated with the spikes in the curli antibodies and maybe this could be a biomarker for the disease,” Tükel says. “Another thing is the mechanism – how acceleration of lupus is caused in a patient.”
“Our study is suggesting that underlying infections may actually trigger the disease,” says Galluci, the associate chair of microbiology and immunology and an associate professor in microbiology and immunology at TUSM. “It’s important to go and study ways to better diagnose these underlying infections and treat them.”
Their next step will be to begin looking at patients using this information.
The research at TUSM was supported by the National Institutes of Health, the National Institutes of Allergy and Infectious Diseases, the Fox Chase Cancer Center-Temple University Nodal grant, the Lupus Research Institute Innovation Research Grant, the Lupus Foundation’s Goldie Simon Preceptorship Award and the National Institute of Arthritis and Musculoskeletal Skin Diseases.
From the life and mind of Lupus Patient Wanda M. Argersinger
© 2015 All Rights Reserved
I don’t say that flippantly, but rather in all seriousness. Our bodies are out of whack. Our immune systems have lost their way and are on the rampage against our own bodies. They are discriminatory either. They attack whatever they want. Our symptoms vary from person to person and often, none of this makes any sense.
Imagine for a minute restoring balance to your immune system. Wouldn’t that mean the end of lupus? Wouldn’t that mean that we would once again be balanced, or at least no longer out of whack? Wouldn’t that mean that we now have a chance to put this disease in its place? Wouldn’t this mean the pendulum has finally swung in our direction without the intention of destroying.
That possibility could be near.
The Chinese Academy of Sciences (CAS) recently announced that Chinese investigators are going to test a new drug agent for treating lupus in upcoming clinical trials. In 2011, the United States approved an antibody-based drug to fight the disease (Benlysta), however, according to the CAS, access to the drug is very restricted due to its high price. The compound called SM934, is a water-soluble artemisinin derivative that has already been approved by the China Food and Drug Administration. According to the CAS, SM934 has been found to “restore the body’s immune balance” and to modulate autoimmune responses.
If the results of these clinical trials are successful, we could see a new potentially game changing drug on the market to treat lupus.
I admit I know a little bit about pulmonary hypertension. My knowledge comes from a patient I knew and from my curiosity and willingness to ask anything when I have the chance. Today I know more about this aspect of lupus due to a new study.
A few years ago a young lady came in to the office at The Lupus Support Network seeking information. She was a beautiful, young, African American, twenty-eight years old. We became friends of a sort with her dropping by to chat once or twice a week. Shortly after she stopped coming by I learned that she had died of pulmonary hypertension. At that time I thought PH (pulmonary hypertension) was similar to high blood pressure (hypertension). I couldn’t have been more wrong.
A few years later we had the opportunity to have a rheumatologist speak at one of our support groups. It was there that I had the opportunity to ask what the difference was between hypertension and PH. He explained that hypertension is an increased pressure in the arteries of the body and PH is an abnormally high blood pressure in the pulmonary arteries that supply blood to the lungs. Both are dangerous, but PH leads to vascular remodeling, difficulties in breathing, chest pain, right-sided heart failure and eventually death.
A new study conducted by the Catholic University of Korea in Seoul found that 7.8% of lupus patients have PH. The study was recently published in the International Journal of Rheumatic Diseases and is entitled “High levels of uric acid in systemic lupus erythematosus is associated with pulmonary hypertension.”
The importance of this study is not just how many lupus patients have PH, but that in these patients serum uric acid was found to be significantly higher in comparison to those without the condition. This little finding can now be used to help determine patients with PH, leading to earlier intervention, which may save lives. An excess of uric acid (hyperuricemia) is not common in SLE patients except in cases of renal insufficiency or the use of particular medication. The research team believes that pulmonary hypertension might set up a favorable environment for the production of uric acid. Interestingly, researchers found that at a cutoff level of 6.5 mg/dL, serum uric acid had a reasonable accuracy as a predictor of pulmonary hypertension in SLE patients (sensitivity of 66.7% and specificity of 96.2%).
While all of this is good news for lupus patients, I am personally appalled at how some of this information was reported. The original headline I saw was More Than 1 in 10 LUPUS Patients Have Pulmonary Hypertension – Renal and Urology News. Reading farther I saw a sub-headline that read – (HealthDay News) — About 8% of patients with systemic lupus erythematosus (SLE) have pulmonary hypertension (PH), and serum uric acid (UA). In reality, the article states that only 7.8% of lupus patients have PH. While the difference between 1 in 10 and 7.8 percent may seem small, only those that go on to read the entire article will know the actual number of 7.8%.
I have to ask was the 1 in 10 figured used as a frightening figure to grab attention? Who wrote that figure as compared with the actual 7.8%? And where did 8% come from?
I have taken pointing out errors in reporting on lupus as part of my job in advocating for lupus patients. Things like this may appear small but in fact they are frightening to patients, loved ones, and anyone involved in educating patients about the disease. I don’t like attention grabbers. I don’t like people who misreport the facts. I don’t like those who try to use information to their benefit when it is to the detriment of lupus patients.
We can be happy about this study and the findings, and at the same time be disappointed about the misrepresentation of the statistics. Let’s celebrate the good news, and keep our eyes open for misreporting and incorrect information. Never believe what you read until you have checked the facts and the source.
From the lupus life of Wanda M. Argersinger
© 2015 All Rights Reserved