I am joining thousands of people across the country for the Walk to End Lupus Now®. I hope that you will join me either by lacing up your sneakers or by donating to my fundraising page.
You can make a difference by donating to help me reach my personal fundraising goal and support the Foundation's efforts to improve the quality of life for all people affected by lupus! A generous contribution of any amount can make a definite impact. Trust me, every single dollar counts.
Living with lupus can be a painful, stressful, and a depressing ordeal. For all sufferers, everyday can bring new tasks and new challenges.
Lupus is an overactive autoimmune disorder caused when the immune system attacks its own tissues.
It commonly affects the joints, skin, kidneys, blood cells, brain, heart, pleursy which is inflammation of the lining of the lungs, and Raynaud's syndrome, also referred to as Raynaud's phenomenon which constricts blood flow to some areas of the body. In most cases, the hands and feet when exposed to the cold.
There are different types of Lupus. Systemic lupus erythematosus (SLE), Discoid lupus erythematosus, Drug-induced lupus erythematosus, and Neonatal lupus.
Nine of 10 Lupus sufferers are women and the effects of the disease hit women harder, also.
The type of lupus that I have is SLE, which is the most common. My struggles have been ongoing for years when I started coming down with unexplainable aches, pains, and chronic fatigue. Along with my other organs being attacked.
I thought the symptoms were the result of overworking myself and life stress. At the time, I worked as a medical assistant, I was married to an amazing man and had two children at home, one of which had Bipolar disorder and was very difficult to manage. So, I just went about our daily life and downplayed a lot of my health issues. Then my husband unexpectedly passed away and my health issues worsened but again, I contributed everything to stress and continued to downplay it.
What made it worse is that I changed jobs a few years after my husband passed and during this time period and had no health insurance to get proper ongoing care. Bills were racking up and I still had to support the kids and my sons treatment.
Then came surgery after surgery and none seem to be related in issues so why look for any underlying condition that could cause this,
About four years ago I moved here to Florida and over the last two years my symptoms have gotten worse. For the first year here, I had no health insurance. Then I began a new job with health benefits and I immediately found a new primary physician and scheduled an appointment. He then referred me to a Rheumatologist and she has ran all kinds of tests and finally a diagnosis, Lupus, Severe Anemia, and Fibromyalgia.
The Rheumatologist has made several referrals as well. I now see a Hematologist, Podiatrist, Gastroenterologist, Cardiologist, Pulmonologist and a Neurologist. Yes, I know it’s all a bit overwhelming and because of that I also see a Psychologist.
I must say that after 12 years of question marks and not knowing what was really wrong, it is a huge relief to finally know what is going on even though there is no cure or specific treatment.
Hey I have been prescribed several medications that didn’t help or made it worse and now I am on Benlysta, and have Infusions once again for severe Anemia and a whole list of other medications.
The past years have not been easy by any means. I experience the arthritis-like symptoms and body pain, chronic fatigue, brain fog and depression. Most recently the diagnosis of Sjogren’s Syndrome which is affecting my eyes, nose and mouth. All of my issues are associated with the lupus. I struggle at times to get out of bed, do simple household work, and by evening time I can barely stay awake to watch a show on TV. My love for riding my motorcycle still remains however due to weakness and dizziness I can’t ride nearly as often as I’d like or used to.
I share all this to raise awareness to what Lupus is because so many people have no clue. To look at me you may never know because almost everything is internal. I do not want your sympathy, I’m not asking for a pitty party. I only ask for some understanding that some days will be harder than others for me. Some days I may have to say NO. But the one thing that remains constant is my will to never give up and to manage this to the best of my ability. I may be sick, but I'm not crippled. I get up and go about my daily activities as best I can and will continue to push through!
"Everyday life is a struggle, with the biggest victory being the chance to keep struggling."
Thank you for your generosity!