Today, the FDA has approved the first drug for systemic lupus treatment in 56 years, Benlysta! This is the first drug ever designed specifically for the treatment of systemic lupus. As I am new in my treatment I am still learning about available treatments and I am unsure what impact Benlysta will have on me as an individual, but I feel certain it is good news for the systemic lupus community as a whole. I can't wait to see my rheumatologist again to ask about Benlysta and what it could do for me. Right now I am on Plaquenil therapy and the results have been noticable, but I think they should be better. I think I should feel better and have more energy and even less inflammation.
Thanks to one of my biggest supporters through my journey to a diagnosis and afterward, Tiffany, I now believe that I don't have to be a victim of lupus, I can be someone who lives with lupus instead. I met her on Twitter @TiffanyAndLupus and she sent me all kinds of material to help educate myself and my family after I was diagnoised December 2010. For me, the emotional pain of having a family that had no compassion for my situation was almost as bad as the physical pain and fatigue that I was experiencing. I started seeking out other people online who have lupus and before long I had connected with many fabulous people who gave me the support I was so lacking at home. They not only offered moral support, but had suggestions on how to find rheumatologists, medications that were helpful, and lifestyle suggestions for coping with chronic illness.
If you're reading this and you have a chronic illness, don't try to go through it alone. Find a support group, or do like I did and build your own. A support network is very important for anyone who is going through a tough time, whether it's psychological, physical, or emotional, humans need other humans to connect with that understand their pain. Thanks to all my wonderful friends who have shown me such support.
Now I'm going to go to research Benlysta and see what I can figure out about it's benefits and side effects.
Wednesday, March 9, 2011
Monday, March 7, 2011
Long Time, No Blog
Since my last insomnia-induced crazy blog entry, I have not only continued to suffer from insomnia, but have also had some sick family members to take care of and a million other things that have kept me from blogging. I think my medicine is starting to really work for me now, so my joint pain and rashes are getting to be less bothersome, but this pesky "unable to sleep even if I take enough sedatives to put a rhino down" pattern is really starting to get to me. It's hard to say if I REALLY feel better because I am constantly in a sleep-deprived state.
I have had several AH-HA moments since I last wrote. Some good and some sad. The good have come from some members of my online Lupus support people. My Twitter Friend Sherri Blaise shared her empowering story about her road with Lupus and how she has overcome the obstacles to be a happy, healthy, business woman. You should check out her new business site where she sells shirts that empower women with disabilities with logos that say "WARRIOR" or "DIVA" and have an assortment of "ribbon colors" for various causes, such as Lupus, Breast Cancer, Etc. The site is http://www.prettydisabled.com/
I have also heard of several people in their late 20s and early 30s dying from lupus related illnesses. That was a shocker, because even though I knew it could be deadly, I never actually knew anyone who had died from it--especially not young people. It was sobering to hear of their passings and reminded me that lupus is nothing to play with. It's hard to learn to walk the balance between taking lupus seriously and taking it too seriously, as a recently diagnosed person. My heart and prayers go out to the families of those ladies.
My husband is home tonight after being away at work, so I'm keeping this one short and sweet. Give some love to my girl Sherri, and check out her site, and remember to be patient and loving with your chronically ill friends (like me) because you never know what tomorrow holds for them.
I have had several AH-HA moments since I last wrote. Some good and some sad. The good have come from some members of my online Lupus support people. My Twitter Friend Sherri Blaise shared her empowering story about her road with Lupus and how she has overcome the obstacles to be a happy, healthy, business woman. You should check out her new business site where she sells shirts that empower women with disabilities with logos that say "WARRIOR" or "DIVA" and have an assortment of "ribbon colors" for various causes, such as Lupus, Breast Cancer, Etc. The site is http://www.prettydisabled.com/
I have also heard of several people in their late 20s and early 30s dying from lupus related illnesses. That was a shocker, because even though I knew it could be deadly, I never actually knew anyone who had died from it--especially not young people. It was sobering to hear of their passings and reminded me that lupus is nothing to play with. It's hard to learn to walk the balance between taking lupus seriously and taking it too seriously, as a recently diagnosed person. My heart and prayers go out to the families of those ladies.
My husband is home tonight after being away at work, so I'm keeping this one short and sweet. Give some love to my girl Sherri, and check out her site, and remember to be patient and loving with your chronically ill friends (like me) because you never know what tomorrow holds for them.
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