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.
Posted on March 13, 2011, in I Am That Wolf and tagged Acupuncture, Autoimmune, Benlysta, Chronic Illness, Fibromyalgia, Health Care, Lupus, Lupus Awareness, New Medication, SLE. Bookmark the permalink. 2 Comments.