Dealing with a chronic illness makes you ponder life in a completely different way. I still feel as though I am at a stand still. At the end of the day I know the only way to change that is up to me. Where do I go to get motivated? I have a loving family around me that have picked up my medical finances since I lost my job, no questions asked. When I could no longer support myself they took me in, no questions asked. When I need medicine, co-pays, rides to doctors, help with simple everyday activities, they are there, no questions asked. Why is this not enough to make me feel completely whole and happy.
This would fall under, other stuff. WOW!!! I can’t believe it and yet I am not surprised. She was born with such a great gift and unfortunately despite this she couldn’t fight the demons that surrounded her. RIP
After my diagnosis in the summer of 1996 I truly didn’t know what to expect. I had never heard of Lupus and had no idea how it would affect my daily life. At 22, your life should be beginning and I felt as though mine was ending. With education of the disease I found that that wasn’t the case. Later that year I was hired at Cinergy as a part-time customer service representative, which came with great medical benefits and that in itself was a blessing. Though my illness was unpredictable, the one thing that remained stable was my employment for 15 years. Unfortunately, in October of 2011, I was led into a small conference room and told the words that you never want to hear, “Your services are no longer needed”. My heart dropped and despite how this would change my life in many ways the one thing that stuck out in my mind like a sore thumb was that I would have no medical insurance. I sat in the room with my supervisor, who obviously was firing for the first time, because she needed assistance from her co-worker, who was also present. The looks on their faces were of nerveousness, clearly not knowing what kind of reaction I may have, but my mom and dad have always taught me to never let them see you sweat. So even though the emotions that I was feeling were explosive I did not let them come to the surface. It is really funny how you can work with a company for 15 years and see people day to day and smile and interact, but when you are let go it is as if they have never seen you before and you don’t exist. I guess that is the corporate world…gotta love it……NOT. Love.
I really don’t know how to begin, except to just begin…ok that sounded dumb. Anyway, the point of this blog is to not only share my experiences with living with a chronic illness, lupus, but hopefully educating people at the same time. Connecting with other lupies would be great but obviously any and everyone are welcome. I don’t know how long or short these entries should be so I will end soon.
My relationship with lupus goes back to 1996. It was a scary time in my life, swollen joints, extreme weight loss and no reason to explain either. I started by going to a holistic doctor who gave me some sort of electrobe therapy that left me stiffer than when we started. Eventually I went to a rhuematologist and after several tests was diagnosed with lupus and immediately put on steroids….awwwwwwww the miracle drug. Let me explain, before I went to this doctor my mother was bathing me, dressing me, helping me in every way and I mean every way. I was given a prescription for prednisone (steroid) for 80mg. Within 20 minutes, I kid you not I could have done a cartwheel, a triple toe loop, and a round off and stuck the landing.
I hope you have enjoyed reading, there is plenty more to come. Love.