There was a woman walking from a Bible study group a few homes away from my parents home maybe 6 months ago. She called out my dog by name, yet didn’t know his name, she asked my mom if she was the owner and mom told her no, that i was. She walked up to my mom and said, I pray for your daughter’s health and I see cancer and was using her hand to go in a circular motion in front of her stomach. My mom told her I didn’t have cancer but I had lupus and kidney involvement so she assumed she was referring to that. We were blown away by this woman but really didn’t think any more of the cancer until a few weeks ago when i was diagnosed. i wish i could talk to her, maybe she was an angel just meant to inform my mom of what was to come. whatever or whoever she was i am grateful for her.
Well what is going on with me “today”??? Besides being exhausted, having body aches, nausea, dizziness, insomnia, headaches, depression, a limp, rashes all over, and a moon face, really nothing. I’ve been having more conversations with myself about my future and what I expect of myself within the next few years. I will be 40 in two years and the two years leading up are going to be memorable. I am tired of just existing….it’s time to be living. That may be my new motto. Life is too short to not leave the house for weeks. Even if I am in pain, I will fight through and with my sunblock, let the sun shine on my face, but only for 10 minutes because I may flare. I tell you it’s always something with me and Lupus. My lupus flares are sparked by sunlight, exertion, stress, and simply doing nothing in some cases. My current medicine regiment has pretty much been the same for 10 years, with the exception of a few changes here and there. In total, I take 8 pills in the morning and 9 at night and insulin once a day. I am finding out different side affects on a sometime daily basis. I am looking to get into a support group for lupus, why it’s taken me this long I really don’t know but the important thing is that I am ready now. It is a scary thought to open up to strangers about something that I consider extremely personal, but I am aware that talking and listening begins the possibility of teaching and learning. Ummmmm another possible motto. 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.