The Eyes Are On Us

The eyes of the world are on us right now. The media has put a banner out about Lupus because of this new medication, Benlysta, and people are listening. It may be for only a moment and within it is the time to use your voice.

It could be one person. It could be 20 people. It could be face-to-face with the people you see every week at the grocery store, or work, or school. It could be people that you socialize with online. No matter who it is you talk to, those of us that live with chronic illness are the ones that have to make a difference and be heard. If we sit back and take the presently accepted treatments, and don’t ask for better answers, then no one will see that there is an urgent need for more.

Fibromyalgia doesn’t even really have a good solution in western medicine. Antidepressants are an approach of mediocrity, considering you’re addressing a symptom and not really looking for the origin. The best results I’ve gotten came from Acupuncture that I can no longer afford, thanks to Aetna’s antiquated belief that it is unfounded, unproven, and without any sound scientific basis. At least Kaiser with all their many issues covered it. Insurance companies are part of the population that we need to assault with educated information. They’re depriving us of the very things that will give us real relief.

Regarding the present voices of disappointment with Benlysta – and there are many… let me point out that it was not originally intended to be a Lupus medication. It was being researched for Rheumatoid Arthritis. It treats what is considered the “mildest” form of Lupus (as if there is such a thing), where there is primarily joint pain. I have that joint pain, and let me tell you that there is nothing “mild” about it. It’s the reason I couldn’t walk & could barely get on my feet for a minute at a time for half of 2006. It’s the reason I am no longer hiking and rarely take walks. It’s the reason I’m slow to get out of bed every morning, and the reason some days it’s hard to even use the keyboard at my computer. It’s the reason I can’t run a vacuum cleaner on my own, and have difficulty opening jars in the kitchen. It affects every aspect of my daily life negatively. It doesn’t even stop there. Show me someone that has one single autoimmune disease and I’ll say it’s a white elephant. They show up in bunches – usually at least 3, and quite often more. So to say it’s “just” connective tissue disease, no organ involvement, is a sad underestimation of what’s going on. This new medication could give some people their lives back. It can return willing individuals back to the workforce where they want to be. It can give a mom the ability to care for her children without assistance. It can alleviate tremendous suffering. I know, because I know someone that has had that kind of answer to prayer from Benlysta.

Stress aggravates this category of disease tremendously. If we relieve one aspect of it, the rest may calm down as well. Some people even have the misfortune of having more than one type of Lupus. Taking control of one gives you the ability to better focus on managing the other.

I get it. I get that for some people it’s sad to find out that this is not their answer. Oddly, I’ve spent the last several months believing it wouldn’t be for me, and now I find that it might in the future be just what I need. We however are not the people to be elitist about who has a greater or lesser need. We’re a pack of wolves – survivors – and we have to be sensitive to the individuality of each member. We each have our strengths and our weak points, but all are equally important.

Each step in research is one of rejoicing, for it brings us closer to a cure. I may not see it. You may not see it. Someone, one day will.


About Tala

-Livestream Broadcaster - Active in Periscope & Busker -YouTube, Twitter, Instagram, & Facebook Pages Advocacy for better quality of life with catastrophic illness & injury. Conditions I live with myself are my awareness platform: rheumatic autoimmune & neurological, women's heart disease Traditional First Nations (Native American) -Training: Tai Ch'i Chuan, medical terminology, cultural Medicine -Avid about hiking, camping, & outdoor adventure Special Interests: Natural health, everything from East Indian to East Carolina cuisine, 16th Century German fencing Favorite Travel Spots: Yosemite, Catalina Island, E. North Carolina, Northern CA redwoods/coastal rainforest ~I live as naturally as I can, stay on a whole foods diet (as in what I eat, not as in "a diet"), avoid as many synthetic meds as I can, and do not consume artificial sweeteners and most preservatives. If you're curious about why, see my posts.~ Periscope/Twitter ID: Tala_NoExcuses

Posted on March 13, 2011, in I Am That Wolf and tagged , , , , , , , , , . Bookmark the permalink. 2 Comments.

  1. I was one of those people who felt “let down” by the news I read and heard about this new drug, Benlysta. Like so many others I have suffered for years from severe joint pain, skin lesions and over whelming fatigue that has kept me in a recliner barely able to take care of myself. When I said taking a shower left me so exhausted I was done for the day my family and friends did not understand. If you have never experienced that type of fatigue you don’t understand for how could you? Had some one told me that before this disease attacked me, I would not have understood either. Now I understand all too well. I wish I didn’t understand but when you live with autoimmune disease the knowledge comes to you. So when Benlysta was soon to come out I held such high expectations of what the drug was going to mean to all of us who suffer from this disease that effects more than the quality of life. It has effected my self-esteem, my self worth, my abiity to work in a profession I love. It has robbed me of money for the plethora of medications I must take in order to live and survive. This disease has damaged my heart and three of the valves that instead of preventing the flow of blood to flow forward to its chambers, my valves flap so loosely that the blood flow sometimes backs up and my heart becomes infected.

    This disease has prevented me from picking up my grandchildren, or taking them to the park. It has robbed me of the beach, my favorite place to be. I can neither walk on the beach nor sit in the sun and read a book. So, I had such hope for this drug and my initial reaction was a big letdown and I shared my feelings. After it was brought to my attention that I was ripping hope from the lives of so many who were as hopeful as I was, I felt terrible. Then miraculously I heard the story of someone who was really helped from Benlysta and I realized I was wrong to take the hope from others. And though it wasn’t intentional, I hurt feelings, I caused distress and if there is one thing lupus patients don’t need it is more stress.

    So, Benlysta is the beginning. It may not help everyone, it won’t help me, but it will open the door and the ears of others. And maybe one day, there will be that pot at the end of the rainbow. And in that pot, will be a real cure, one that will change every life of everyone who has this dreadful disease. I hope I am alive to benefit from that drug and I hope when that day comes, my insurance will find me worthy by paying for it.

  2. The media has done us great disservice, as we talked about already. I believe the number of people in the *subset* (moderate affliction) that it can help is probably larger than we realize. They keep saying it doesn’t treat the “deadliest form” of Lupus, when they’re actually referring to the advanced condition of people with the same form that it does treat – SLE. Once I dug that info out of various articles, I was kind of shocked at the distortion in phrasing that is going on… even in the wake of an opportunity for better awareness and education.

    My thought about the entire thing is this… I wish this medication had happened at least 20 years earlier. There was a time when you, and many others, were in that subset… before it became so critical. So we will believe for two things here. The first is that this medication will prevent as many people as possible from progressing to that critical stage, or at least slow it down a LOT. The second is that this new key of insight about the functions involved in the disease will lead us to more and more information and solutions.

    I miss the beach too.

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