Thursday, February 28, 2013
Here is a short video from some of the best experts that I have seen explaining what I have and what it does and just how dangerous it is. http://player.vimeo.com/video/44491869 A special thank you to all of you in the video and to the pheo-para alliance and pheo-paratroopers for putting this together.
Wednesday, February 27, 2013
Today is going to be better. The first Killdeer has arrived and Sunday a pair of Redwing black birds showed up. Now waiting on my barn swallows and hummers. Usually early May. I am still upset over yesterday. I thought doctors were to fix us, not judge us or tell us how to live our lives. I will call and complain, but will wait until I am not so angry over it. To tell me to change my life... How do you explain to someone ( I didn't bother) that for 15 of those years I have been tearing up my shoulders and hands and neck that I was physically taking care of another person. I was given this teeny tiny baby and told to take him home and love him until he died. No time frame was given. 15 years of carrying him up a flight of steps several times a day. 15 years of lifting him in and out of bathtubs. 15 tears of transferring him from the floor to his wheelchair, to his bed. At 5 years old, that's not too bad but but from 10 to 15 that is a lot of body to care for. When he died he was almost 6 ft tall and 140 lbs. I wonder if that dr ever tried to carry a 6 ft person up a flight of steps or to try and take them out of a wheel chair because they were having a grand mal seizure. There was no sense in trying to explain what a joy owning horses are. That to be with a horse is to to get away from the mental and physical stress of my life. That to be with a horse you cant be anywhere else except in the moment, right there at that time. That a horse can transform you and give you hope and a reason to get up everyday. That sometime in 1974 an old man gave a terminally ill girl her wish and told her parents that if that girl was going to die to let her live her dreams now . That what an escape a horse is 5 years later to an abused teenager or that 20 years later a battered wife. I could not put in to words what it felt like from 1999 to now to get in a kayak and leave Youngstown, Ohio and end up next to 3 rivers stadium in Pittsburg and a army corp of engineer telling you cant be there in a kayak. Or to submit a video and try to get on survivor in 2001. To have a goal of travelling down from Lake Erie to the Gulf of Mexico in that kayak. I want to put up a web page with a gps tracker and a live video stream " Where is Lori ". That when I turn 50 I want to walk the entire Appalachian back pack rail. I want these damn drs that see wal-mart on my insurance card to know that I spent 6 1/2 years of my life juggling kids and a sick child to go to school to be a nurse. That I gave up that career because of egos like his. That all of us that work at wal-mart are human and that the vast majority of us have college educations, but the job market here sucks. How do you explain that even though you have a major illness other body parts still break down just thru wear and tear and age and that those parts still need fixed. The goal is to keep me as functional and active as possible. These parts that need fixed are painful and are disruptful to my daily living. I am right handed and can not write,type,do dishes, fold clothes, brush my teeth with out stopping and shaking out my arm. Have you ever tried to brush your teeth with your non dominant hand ? Not fun. Good medicine should be if the current dr does not know, they should pick up a phone and actually find and refer to an expert. Or use the internet and at least educate themselves. There is enough information out their that we as patients has acess to, Im sure there is much,much more that the doctors can get to.