Tag Archives: blogger

Denise’s Lupus Survivor Story

Hi, my name is Denise I have Lupus (SLE) since 2004, I also have Sjogrens, Raynauds, RA, Diabetes, OA, Neuropathy, DDD, Herniated disk in my lower and upper back, I have sleep apnea too. I have thyroid problems and been having seizure symptoms and TIAs since 04 I was in and out of hospitals because of it. I was on Gabapentin for 6 years and my Neurologist said he, would wean me off it because he thought maybe that was why I was having the symptoms of TIAs and Seizures. Well, he was right I am so glad I got off that medicine I have not been in the hospital for over a year since being taken off that medicine. I have been in and out of a wheelchair since 2003. Since 2011 I have been back in the wheelchair. I buy cheap viagra used to dance ballet and Jazz and tap for 20 years. I fought for SSDI it took two-in-a-half years to get accepted.

In January 2013 I had a Radical Hysterectomy. Because they suspected I had uterine I think of all the changes in my life through the years and sometimes I feel like it is not my life, sometimes I wake up in the middle of the night and think this is a nightmare, but it is not, it is my life. I have had to accept it. Writing helps me accept my life as it is.

I wrote my story to let others know that no matter what you have been through, that you can make a good life for yourself. I share about being abused and being a survivor. I share about my sobriety. I stopped drinking in 1995. I share about finding my birth mom. I share about my loving husband. He is such a sweet heart. My husband and I met before I was ill. Are relationship has been wonderful and very hard because of Lupus, I feel our relationship is growing stronger because we both take time for each other and we listen to each other. Lupus has taught me to communicate and talk things out better. Communication is important; I have a peace in my life today.

I am a Lupus advocate here online. I enjoy sharing with others helping others. Life is short so I feel we should enjoy each other’s company and help each other. God brings the right people into our lives for a reason. To read my story. “Thank you God. One Lady’s Journey Within.”

Here is my new blog Where I share poems and more.
The reason I write is because I want to share with others that no matter how bad our life may have been we can have a good life. We are able to live and be happy. I am so glad to be able to share with you. Denise Love

Regina’s Lupus Survivor Story

lupuss urvivors imageI was first diagnosed with lupus in 2010. Although I had 3 positive tests, my doctors insisted that I did NOT have lupus and further tested me for other collegan diseases. I also have RA, OA, Raynauds and Colitis. This came after being mis-diagnosed with MS and Multiple Myeloma; both mimic Lupus. After my doctors mis-diagnosed me, I realized I needed to become my own advocate and find a new rheumatologist and neurologist.That’s when I wanted to become an advocate for other lupus patients. In the beginning of my disease I was really sick and didn’t know how I was going to take care of my then 1 year-old and 3 year-old boys. My husband jumped right into action to help. I found that support from family and friends is key to a chronic disease because depression runs so high with lupus. Today, not only am I a lupus survivor, but I’m a co-founder of a “YOU” Can’t See Lupus online support group (Facebook). I write a blog describing what it’s like to live with lupus on a daily basis along with the daily challenges that come along with the life events. I mentor other lupus patients on how to be their own advocate, where the lupus patients can locate

their resources and how to utilize those resources. It’s my mission to bring daily awareness and educate others on lupus. I reaffirm to myself and others that we will not be defined by our diseases.I have found that if I find one thing that I’m grateful for daily and with a positive attitude my life has been better and will feel better. To me, quality of life is everything. I chooses to feel and look better; “But You Don’t Look Sick” sticks with me and really,, who chooses to look like how they feel, not me! Lupus has taught me a lot during this journey also. I look at life in a different light and don’t take things for granted. For the past 2 years, my dear friend and I have (she’s done it for 3 year but I jumped in the last 2) run the Annual Crystal Lake Lupus Fundraiser. The money we raise benefits the Lupus Foundation of America. We decorate downtown Crystal Lake in purple ribbons, the local stores and community donate baskets and gifts that we make into raffle baskets and we raffle off the items. Last year we raised over $16,000 and this year our goal is $20,000! We don’t stop at May by spreading awareness, for us it’s 365/24/7!

“YOU” Can’t see Lupus Living with LUPUS – A day in the Life