I struggle with whether or not I want to share my live journal about my latest round of medications since I often dance around the subject here and there I don't want to fill you in on all the gruesome details and I certainly don't want my blog to become about documenting my illness. I have always been and always hope to be the positive voice among some of the sucky stuff that my son deals with in having Spina Bifida. But as I teach him how many people have come together and learned so much from his story through this blog and Spina Bifida Connection, I can't help but note my own hypocrisy in not being more open with my own story. I am an over googler. When I want to know something about a medical condition, I want to know the exact precise timeline these things happen. Did I ever share with you that when my father passed away I sat there holding his one hand and with my other I was googling terms like "how long after the toes turn blue will his breathing stop". I am just the kind of person that needs a blueprint. The more prepared I feel the better I can cope. But when I google this for a blueprint I just see general talk. So, here is my experience for those of you looking for ...
Mrs. Holliday Kicks Lupus Butt
Last night I was gifted a new nick name- Mrs. Holliday. The two l's are intentional. Dave felt it was a great moniker for how I sounded while hacking up a lung and still drinking up at the bar. It was an impromptu get together of old friends and new and a tiny cough was not going to keep me away. Certainly not as I had pressed on over the last few weeks on the wings and the prayers of steriod injections and double my daily steroids. I know, doubling them up isn't smart but it was just to get me through these really tough holiday weeks. It helped me to hide how badly my body was yelling at me to stop. BUT I have no time to stop. I have family I love, kids who need me, friends I adore, a career that fulfills me. I have high school basketball season to cheer through. Finals to help study for. Doctors appointments that must be managed. Many, many of those. You get it. I know you do. All of you have your families and lives that must go on. And just when all seems to be on the upswing I wake up with an ugly harbinger that the lupus knows I have sold my soul too long and it is come to take it's due. The lumpy, itchy rash on my arm is the mark of the dark Lord of Lupus. It's a ...
The F Word
Right now I would love to hear a doctor say that word. F. Fibromyalgia. As strange as that sounds, I am at a point where Fibro would be such a blessing to hear. I was fairly certain going into all this that I would hear the doctor say the F word and I found myself struggling with it. Mostly because fibro is what they say when your body constantly feels like a truck ran you over or someone randomly lights your limbs on fire. But they cant REALLY find anything to explain it. It feels sort of fake. Like its a word used to pat you on the head and send you out the door. Cause there isn't really a definitive test for fibro like there would be for so many other conditions. And I know that is part of the problem with diagnosing conditions like this. Don't get me wrong, I do understand that fibro is a very real thing and those living with it for years have faced such unfair stigmatizisms. And I do understand that I have all the tell tale signs and symptoms. Google diagnosed me long before the doctor did. I do understand that how I feel is summed up by the word fibromyalgia. And so I went in ready to hear the F world. But it didn't happen like that. The doctor saw something ...