I am a writer and published author. Currently, I have 2 published books, both of poetry. I’ve been writing prose, poetry and currently working on a book about my own health and life journey.
I have two grown children, Amanda and Jason. My daughter, Amanda and my Son-In-Law, Jimbo have given me 3 Grandkids, Heather, James and Logan. They are just incredible as husband and wife, as parents, as friends, and my daughter is just the light of my life. They live near Corpus Christi, so being about 7 hours away keeps us from seeing each other as often as we would like. We do talk almost daily on the phone.
My son Jason, lives closer to me, in my hometown. He keeps busy with music, had been a police officer, does Volunteer Fire Work, and like his “Mom” is always finding new things to keep him busy. Although we live close, we don’t often see each other. He is always on the go & I am always busy with my own various “loves”. I have 2 “fur-babies” who are the loves of life. “Bella” my Doxie who is just over a year old, and “Peanut” a small (but chubby) Terrier, who is just over 3 year old. Both of whom keep me on my toes daily. Without them, I am not sure I could bear all of the illness and pain.
I LOVE anything “Medical” in nature, I oil paint, crochet, embroidery, love yard work, have several HUGE house plants, and for the most part, whether in pain, ill or not, try to keep moving daily. If I am “down” on the sofa, then you know it’s bad/ Although as of the past 9 months, the RA, Lupus, and other medical issues some due to the RA and Lupus, have really put me in a “bad” place, both physically and mentally.
My activism, advocacy, and volunteering also help keep me “going”. I’ve worked with or continue to do work with the Arthritis Foundation, WEGO Health, Sjogren’s, Lupus, Alzheimer’s as well as of course “Creaky joints” and the other “co-advocacy” things that go along with Creaky Joints.
I was diagnosed in 2007. Although for 10 years or more before then, I “knew” I had some type of “autoimmune illness or illnesses”. As many of us, it took YEARS to find the right doctor, that “listened” and then took the time to test, and figure out that not only did I have Lupus and RA; also “Sjorgren’s” Raynaud’s, and they are still testing for other autoimmune issues such as pernicious anemia, MS, and several others.
About the same time as the diagnosis came, I had 8 “joint surgeries”, that was in 2007. I’ve felt that had another physician took the time to HEAR, and do the proper tests, and really look at my history, I may have not had to go through all the major surgeries I’ve been through. Even the Sjogren’s had already “taken my teeth”. By the time they found out, I had several teeth within weeks literally “rot off” at the gum line. The on things I “NEVER” wanted to do is “lose all my teeth”. Yet, in 2014, I had to have all of them removed, and have total dentures, which to this day I don’t like. Other than them being “straight” and not crooked like my real teeth, they are a nightmare to live with.
I find my greatest challenge living with these illnesses, comes down to me not being able to “do” all that I am used to doing. I am no longer able to climb ladders, hang ceiling fans, trim trees, and to the point I no longer can sit and type, or crochet like I used to. These horrid illnesses have “slowed” my life to a snail’s pace at times. Even the surgeries as a whole, have not been as bas as the disease progression, and how they take such a toll on my entire body, mind and spirit. I often feel so totally alone. When I can barely zip up my jeans, button a shirt, or open a can, then I am back to that place, that I can no longer play drums, or the piano. Trying to live life, with so many things that I loved, now being taken away from me due to these horrid diseases, The number 1 thing that was on my “agenda” almost my entire life, was to be in the medical field. I had gotten accepted to nursing school, when my kids were young. Due to the need to work, I had to give up that dream at the time. If it were not for there ailments that keep me where I can’t do things as I want, I would go back to school, to start working on my degree either to become a Research Doctor, or at least try and get as much “medical classes” under my belt. As I told my pain specialist, who just a few months ago “suggested” I try to go back to school, my fear is that I would not be able to hold up physically to going to classes, the travel time to school and so forth. It was a dream of mine from the time I was about 13 to be a nurse, yet life takes us on paths sometimes that we may not understand until later in life.
My hopes are the through the advocacy work, through all that so many of us do to push everyone, from Governmental bodies, to those who don’t understand these illnesses, to HELP us find a way to CURE or completely one day STOP other from having to suffer the day to day helplessness that so many of us live with. Knowing that there are more people doing research, clinical trails, pushing the limits, over and above the medical knowledge we have now, in the hopes someday, no longer will out ancestors to come have to live with these medical problems.
Without advocacy, there would NOT be as much as research. We may not have all of the non-profits getting the funding, pushing Congress, pushing the Pharmaceutical Companies to make strides in new medications and devices. OUR VOICES often are what bring those who don’t know or understand these diseases to an understanding of just how critical the situation is. It also give those of us living illnesses that at times are “invisible” a way to show what we go through in just a day or a week. I fee advocacy for myself and other is empowering. When those days comes that I am ready to give up, I KNOW MY VOICE needs to be heard. WE do MAKE A DIFFERENCE!
