For those of us with invisible chronic diseases, proof that “it’s not all in your head” is very affirming. This sounds like a big step forward for ME/CFS.
There are 13 days left in May, and 13 days left of my Lupus Awareness Month fundraiser.
For the final 13 days, here are 13 Lupus facts:
13. There are an estimated 1.5 million Americans currently living with lupus. That is approximately 1 out of every 220 people.
12. Lupus has no known cause and no known cure. There seems to be a genetic predisposition for Lupus, but genes alone do not determine who develops it. Researchers believe that many factors trigger the disease.
11. Lupus is an autoimmune disease, meaning that the body’s immune system attacks otherwise healthy tissue including joints, muscles, and skin. Lupus also has potential to do serious damage to major organs such as heart and kidneys.
10. Lupus is difficult to diagnose. People with Lupus experience symptoms differently, and the symptoms often mimic other diseases. It takes an average of six years from onset of symptoms and four different health care providers to accurately diagnose Lupus.
9. First degree relatives (parents, siblings, or children) of people living with Lupus have a six-times greater likelihood of developing the disease.
8. The average annual direct and indirect costs incurred by a person with Lupus can exceed $21,000. This is a higher average cost of illness per person than for rheumatoid arthritis, heart disease, diabetes, hypertension, or asthma.
7. In a recent Lupus Foundation survey, more than half of people with Lupus report that their symptoms have limited their ability to work full-time. Additionally, nearly 3/4 of caregivers report that caring for someone with Lupus impacts their work productivity.
6. Sensitivity to ultraviolet light, which is present in both sunlight and artificial light, affects as many as two thirds of individuals with lupus. Photosensitivity may cause fever, debilitating fatigue, joint pain, rashes and other symptoms.
5. People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.
4. Nearly 3 in 4 people with lupus surveyed (76 percent) said fatigue limits their ability to participate in social activities.
3. About half of all people with lupus will experience a serious infection during the course of their disease.
2. As many as 60 percent of people with lupus will experience some type of memory problem, such as recalling names, dates, and appointments, or balancing a checkbook.
1. With current methods of therapy, 80 to 90 percent of people with non-organ threatening lupus can look forward to having the same lifespan as people without lupus.
For more information about my Lupus Awareness Month fundraiser, please visit support.lupus.org/goto/elfinjoy.
I was diagnosed with systemic lupus erythematosis (SLE or Lupus) in early 2016. Lupus is an autoimmune disease in which the body’s immune system causes inflammation. It can affect any organ system in the body. My diagnosis followed several long years of increasingly painful and frustrating symptoms. Though Lupus is not a “good” diagnosis, it gave me a profound sense of relief to know that this is not all in my head, and that my condition finally has a name.
Looking back the patterns are easier to see but they were not obvious as I encountered them. My experience is fairly typical for people with Lupus. According to the Lupus Foundation of America, it takes an average of six years from onset of symptoms to correct diagnosis. More than half of people are misdiagnosed at first, and it takes an average of four health care providers to find one who correctly diagnoses Lupus.
The first symptom I noticed was an overwhelming fatigue. For several months, I would come home from work and fall asleep on the hard floor under the kitchen table. I had two young kids at the time, so I was not sure whether this level of fatigue was normal or not. I was diagnosed with a thyroid deficiency.
Then my fingers started losing circulation when I drove my car in cold weather. I lived in Montana at the time, where cold weather occurs at least six months of the year. My fingers turned white and it took several minutes in warm air for the blood flow to start again. This is called Reynaud’s Syndrome. It can occur on its own, but it also accompanies many autoimmune diseases.
After that, my joints started aching and swelling. First my toes and the balls of my feet, then my hands, knees, and elbows. On bad days, my shoulders and hips are symptomatic as well. X-rays showed no joint destruction, which confused diagnosis further. The pain would wake me up in the middle of the night, after I had finally managed to fall asleep.
My wonderful rheumatologist patiently started medication regimens to attempt to find one that worked. Prednisone was a staple to control inflammation, and for a long time it was the only thing that was effective. I had a core of seven medications with an eighth and sometimes ninth that was rotated through. This number also is in line with national averages. I tried methotrexate which felt like poison (pretty sure it is…). I tried Humira with no effect and Remicade, which made me feel like I had a bad case of the flu. Each attempt took 3-6 months to evaluate the effects, which to this point were negligible.
A fluke accident led to a breakthrough. My doctor was in a horrible car accident which took her out of work for months. I was transferred to one of her colleagues. He looked at my list of symptoms from a fresh perspective, and was convinced I was a better fit for connective tissue disease than the working diagnosis of some form of autoimmune arthritis. He recommended specialized blood work to test his hypothesis; it came back with a very strong likelihood of Lupus.
Shortly thereafter, he started me on Benlysta. Similar to Remicade, Benlysta is a biologic drug administered intravenously. It is the first and only drug created to-date to treat Lupus specifically. My doctor warned me that I may not see immediate results, but like the other treatments I had tried, we would try it for six months and evaluate the effect at the end.
It has been more than six months now, and I believe that Benlysta has been an improvement in my quality of life. I do not feel back to normal by any means, but I have been able to reduce other damaging medications from my daily regimen. My dose of prednisone, which can lead to cardiac issues and osteoporosis with prolonged exposure, has been reduced to a quarter of what it was one year ago. I have also been able to reduce my use of pain killers and their attendant risks and side effects. These are positive changes, and at this point I will take any small improvements I can get.
This year I am marking Lupus Awareness Month by participating in the Lupus Foundation of America’s Make Your Mark™ program. I am hosting a Lupus Awareness Month Candle Sale on my Etsy site to raise critical funds to improve the quality of life for all people affected by lupus through research, education, support and advocacy. Any funds donated directly through my Make Your Mark page are tax-deductible. I would greatly appreciate your support.
For more information on my Make Your Mark fundraiser, please click here: http://support.lupus.org/goto/elfinjoy
For Lupus Awareness Month facts, please click here: http://www.lupus.org/action/lupus-awareness-month-facts
For my Etsy store, please click here: elfinjoy.etsy.com
Thanks for reading!
My first job in aviation was flight attendant. Anyone who has traveled by air is likely familiar with the preflight briefing. Remember what you do with an oxygen mask?: “In the event of a loss of cabin pressure, the panel above your seat will open…fasten your own mask first before assisting other people.” That verbiage is in the briefing because your first instinct may be to help the people sitting next to you. Those people might include your children and your grandparents – people you would typically be willing to sacrifice quite a lot for. Have you ever wondered why you must put yourself first?
As you ascend through the atmosphere, the air gets thinner and thinner, meaning there are fewer oxygen molecules per unit of volume than at the surface. Since you breathe in fewer oxygen molecules, less oxygen gets to your brain. This reduction of oxygen in your bloodstream is called hypoxia. Hypoxia makes you lethargic, and affects judgment and reaction time. Most dangerous for aviators is the tendency not to be aware that they are functioning at a cognitive deficit until it is too late to do anything about it.
In aviation, we are taught “time of useful consciousness.” For each altitude, there is an approximate time span before a person is rendered unable to take action, even though they may still be awake. At the altitudes where most jet aircraft cruise, it may only be about 30 seconds before you may not be able to make a good decision.
That is why it is critical to ensure that you have oxygen first: you cannot help anybody if you are unconscious, but you can help others by helping yourself first.
It would be nice if there were a similar chart – “time of useful energy” maybe? – for autoimmune diseases like lupus. You could enter some data and end up with a reasonable goal for the day. The catch with lupus seems to be that you never know at what altitude you are flying. I still think I am mostly invincible, or at least that I know my limits, so I push myself to the limits that used to work for me. Sometimes it turns out okay. More often that not, I end up feeling like I can’t get my head out of the low-oxygen clouds.
Several people have reminded me that taking care of myself is in fact helping to take care of my family and friends. Getting enough rest, eating right, and getting regular physical exercise are a few things that make me more healthy in the long run and create less worry and stress for the people around me. I know this, but it has been difficult to put into practice.
Every day, I am trying to make small improvements in the three factors listed above: rest, diet, and exercise. The number of days I fall short of my goals since I got sick far outnumber the days when I feel success. Those goals often compete with the goals of working 40 hours a week and spending quality time with my family. I struggle with the mindset that if I am not able to accomplish something, it is my fault, that I needed to try harder or have a better attitude. Sadly, I find that work ethic and optimism can only do so much to change my circumstances, and often pushing myself has the effect of exacerbating my symptoms. At some point, it is better to throw in the towel than to keep fighting.
One thing I learned in aviation, both as a pilot and an air traffic controller, was the importance of knowing your limits. Each one of us is different from the others and comparisons to other people may not be helpful. Once we are comfortable with our typical performance, individual physical and mental ability may vary from day to day. Lupus has been an ongoing process of relearning my limits, and learning how to give myself permission to take care of myself: to relax, turn in early, to try to boost my energy reserves so that I can start the whole process again tomorrow.
A few years ago I developed a chronic illness. It has changed many things I took for granted in my life, such as my perceived freedom and ability to do whatever I put my mind to, my ability to function at work and at home, and to provide for myself and my family. As these changes have caught up with me, so do doubts, fears, and questions. Lots and lots of questions.
The internet has been a wonderful resource for answers, both scientific and anecdotal. I can find research studies on almost any subject, and hundreds of real people telling real stories. Still, there are lingering questions that these people cannot answer, though they help to point me in the right direction. The past several years have been challenging in their confusion; the path ahead has not been obvious.
I found that one of my best weapons in this fight has been determined optimism: the choice to make the best of what I have, and to return the assistance I have received in the ways that I am able. As a part of that process, I started a project on Etsy, which you can visit here. This project is about sharing hope, both through the items I have for sale, and by donating a portion of the profits to autoimmune disease research.
This project is just beginning. I hope you will join me for the journey, and perhaps I can be of help to you or someone you know along the way.
More background on me is posted on my About page. Thanks for stopping by!