I made a vow I would not spend a lot of time on this site dedicated to whining about my chronic illness. However, since May is Lupus Awareness Month, I did want to take some time to bring awareness to this disease that has wrecked havoc on my life and my body (and on my family, to be honest). Lupus is a nasty disease and it has been very difficult for me to cope with. Just when I have thought I have figured things out, I have had to alter my life a little bit more to cope with the challenges of it. Thus, my theme – recreate and renew. Honestly though, I am very lucky. I have a great family, husband, kids, that all support me. They get me through the times that are extremely lonely and frustrating.
Employers frequently are not understanding about the issues surrounding people with Lupus because we often look healthy and when we don’t we have pink faces due to what they call a malar rash or butterfly rash. Lupus got it’s name from the latin of wolf – in fact, if you many Lupus patient’s often refer to their disease as “The Wolf.” Instead of attacking your joints as Rheumatoid Arthritis, Lupus attacks your organs.
Main symptoms of Lupus are fatigue (which is often debilitating – imagine feeling like you have the flu all the time), skin issues such as rashes, sores, and eruptions, joint pain and swelling, headaches, stomach issues, lung issues such as pleurisy, heart issues such as pericarditis, anxiety, depression, seizures, and kidney disease. Flares are during the worst times of the disease but most people experience some symptoms, especially fatigue, all of the time.
In addition, many patients with Lupus have many additional diseases as well. I have Fibromyalgia, asthma, degenerative disc disease, Reynaud’s, and seasonal allergies. Basically, I am just one big inflammation. 🙂
Treatment at this time is not good. All drugs involve taking immunosuppressive medications or biologics that have severe health risks. Benalysta is the last drug that has been developed for Lupus and that is still unaffordable to many people. For many people, proper treatment is still out of reach financially. Even though over a million people in the United States have Lupus, it is one of the most underfunded diseases in terms of research. So, if you know anyone who is participating in a Lupus walk this month, please donate!
This month, I am donating 10% of the profits from my Etsy shop to Lupus charities.
What I want you to take from this is to know that there are so many others like me, fighting every day and still very happy to be alive. We would love to be healthy. Many are often accused of trying to get attention but really what they want is understanding for their mood, their lack of being able to go out, their lack of energy, or their need to sleep, rest, etc. They are not attention seekers. They are seeking for understanding and acceptance in a society that really does not have much empathy for those with chronic illness, especially for those illnesses that are invisible.
If you know someone who has Lupus the best way to help them is to be patient with them. Don’t give up on them. Don’t forget them. Offer to take them to get groceries. Rent a dvd and come and watch it with them. You would be surprised how isolated those with this disease feels. Many are near home bound and rely heavily on Lupus support groups for company because old friends have abandoned them. Most of all, BELIEVE them. Do not offer them anything that stimulates their immune system. Remember our immune systems are overactive. So those antioxidants are not what we need. In fact, many over the counter vitamins, or dietary supplements really interfere with our medication regimens. We truly want to feel better and most of us are doing everything we can in order to do so.
I hesitated to post this, but above is a picture of me. It is not one of my best. It is a picture of me, during a flare, showing my Lupus rash. Each person’s looks a little different. I just wanted to put a local face to the disease and maybe make it more real. One last thing, the yellow flower was something I posted on my Facebook account a couple of years ago in honor of a dear friend that I lost to Lupus related complications. I still miss her very much. I know she is now pain free and dancing in Heaven, but boy do I miss her.