Challenging myself to live life to it's fullest despite my Lupus, Sjogren's Syndrome and Spondylitis
I LOVE my life! Yes, I wish it involved less pain and I’m working toward that, but I wouldn’t change anything about my life. I have a wonderful husband, John Michael, of who I am incredibly proud. He works away from the home as an airline Captain and is gone about 60% of the week. When he is home, though, we get 100% of him. Without his love and support, there is no way I could have made it though the graduate program.
I am the proud mother of three beautiful daughters. My oldest daughter, Caitlin, is a college sophomore. It has been a truly honor watching her grow into a courageous, vibrant, confident young woman who knows what she wants and is actively working to achieve her goals. My middle daughter, Riley, is my “brain-child” who is always curious and quick to ask questions and work through answers. She is also a wonderful artist who is so at home in conversation with adults, we often forget she is just 12. My baby girl, Rae, is my little cheerleader. She is the giver of random hugs and the one who knows just what to do to push Riley’s buttons. Rae is my free spirit, quick to champion the underdog and always ready to have fun. I didn’t think it was possible to have two children only 22 months apart and be so drastically different from each other.
We have one other member of the family but I can’t really introduce him with out mentioning the family member we just lost. My sweet Jenny was my constant companion for 13 years until she was called home in early March. She was my angel; knowing before I did when I was either coming down with a cold or a flare of pain. She would herd me into my room at night if I was still up past 830pm and would stay by my side until the kids were in bed. Once she didn’t have the need to “protect” me, she would finally relax and sleep. Losing her was the single most gut-wrenching event I have encountered in years. I felt I had lost my best friend.
The depression I experienced was so deep, I didn’t want to leave the house. I was ready to leave graduate school and stay in my room. Finally, with the help of my counselor, I realized I needed to try and fill the huge hole her death left in my heart. Enter Rue. We found Rue at the same rescue shelter where we found Jenny 12 years before. He was this big ball of happy that immediately won my heart. He’s a little one (not even 18 months old) but being half Aussie Shepherd (as Jenny was) and half Great Pyrenees, he is not a small pooch. I have begun working with him so he can help me officially as a service dog. He has filled a very deep whole without replacing my Jenny. Totally different but yet, a comfort that is so special.
Living with Lupus/Sjogren’s Syndrome/Rheumatoid Arthritis has changed my life in so many ways. While its great to have a diagnosis, I am still wrapping my head around having a disease that will be with me for life. I’m making life style changes that will hopefully help me in the long run. And despite everything, I’m done with graduate school and now hold a Master’s Degree in Biochemistry and Molecular Biology.
As I transition, so will this blog. I’m going to try and share the challenges of the changes that I’m making and give a look inside the world of biomedical research. I have tried for a several years (since I started) to blog once a week at least and I think now, I can finally get close to that. I hope to also pass one useful information concerning the diseases and syndromes I’m battling and hopefully with all this together, I can help make the world a better place.
So I hope you enjoy this look into the ball of chaos that is my life! Hang on, it’s quite a ride!