Friday, May 25, 2012

Everyday Challenges

Living with this disorder poses everyday challenges. My life is not my own, my life is anything but normal. The healthcare profession is not what I imagined it to be. To me it seems unless you are walking around with a big gaping hole in your chest and bleeding profusely, then you aren't sick or don't require immediate medical attention. Unfortunately I am in the middle of another episode, and I am on day number 3. I have been sick on average at twice a week for the past month, and this latest episode being the worst so far. I have been on the emergency since Thursday morning and have not had a thing to eat because of the vomiting, yet I am not sick enough according to the hospital to be admitted. My doctor had to fight for me and tell them he was not sending home a patient who can not hold down food and has not eaten in days. What has the healthcare system come to? Especially for us Cyclic sufferers. Who will fight for me, and the rest of us who suffer from this horrible disorder. Speaking for myself and probably a lot of other sufferers, all we want is to lead a normal life. We want to enjoy life, the sun, wind, stars, and some sense of normalcy when we can. Who will hear our calls. Who will fight our fight? I am not asking for much other than to get treated when I need it and to enjoy my time with my children and loved ones when I am well. I think that's what most of us want. More importantly we want to be treated with respect and dignity, without our sanity being questioned. Last thing I want is to have a psych evaluation to ask me if I am crazy and doing this to myslef. Who in the name of the lord would want to live a life this way. Not me, and that's why I am going to do whatever I can to make people aware and bettter educate others on what this syndrome is and how it's a real disorder people are suffering from. Not something made up in our heads. This is our lives and it's up to us to make the best it. Life is to short, live it to the fullest......... Linda

Wednesday, May 23, 2012

Maybe there is still Hope

Hope.... Hope is all I have left at this point. Out of a two week period I was sick for more than half of it, so I can only hope that it will only get better. How much worse can it get???? Is this the way my life is supposed to be? I hope not! I'm just having a very blue day. Im hoping that better days are to come, it just doesn't feel that way. I talk so much about hope, yet I am very weary of it. At my last doctors visit with my new gastrointerologist yesterday and he mentioned a port and home care with iv therapy twice a week. This is what my life has come too. At age 39 I am practically home bound because I vomit! People aske me what I do for a living and I would like to say I vomit, but that's being mean. Well maybe I'll be in a better mood tomorrow. At least I hope I will. Linda