not a day goes by when I don’t pray that the veins on my arms magically open and I start to bleed out. Laying in bed with my eyes shut I pray to no one in perticular but over the days and weeks there doesn’t seem to be an answer…no sign..no show of happiness.. then I get up and go find my kids and hugs them for as long as they let me before they go out into the world. Most of the time I am not so messed up, but I hate this.. I hate all of it.. I have worked on being kind and loving and seeing the good for the bad.. or whatever smile through the rain bullshit you want to put into this situation. Fact is, I hate everything, the lack of assess to healthcare that is any good, the people who run the Ryan White Program who don’t give a shit about anything but making their quota.. who talk down to people and who don’t even get the information on how the program operates.. I hate them..I had the need for a caseworker in a diffeernt state who cannot help me because I live in a different state.. I hate that this is the closes healthcare specialist that I can see but not in my state so my state Ryan White people are bitchy.. but no one wants to cover the cost of travel.. even as the closest is it an hour.. in my state it is an hour and a half to the doctor.. how I hate the fact that my labs were drawn in August but now it is the end of September and I have not see the doctor yet because she is too busy.. I am mad.. a worthless emotion.. hate that to have a possiblilty to find a date much less a mate it involves complete information of my health history..I am so mad.. soo sooo hurt and just not feeling it much anymore.. the one sister I love very much, she cannot handle my struggle.. she tells me not to share with here anything.. my other sister believes that I am smited for being evil.. same with my brother he thinks that I am evil but my sister beleives that because her God told her as much.. he just doesn’t like it when he can’t control things and it lead to the unhappy and early death of my mother.. but that is a different story.
My children who are aware of my plague are troubled..worried and scared.. even with the most happiest front I can muster and the truth of it all, it is not enough to sway their fears. My one daughter of 18 said to me.. “Mom, twenty years is not a long enough time for you to keep living” then she cried in her college course. I have been online to supportive sites, have searched for support groups, have looked for others with my plague but have not found anyone in over 18 months not a one other person in my state or the three others around mine..not a one.. working to keep myself healthy is a fulltime job.. a fulltime job that doesn’t leave me able to work fulltime..did that and my CD4 dropped from 1100 to 715..but I am told not to freak out about it.. well that is an easy statement for a person to make who doesn’t have to worry about it…I hate that person too.. am tired.. and when I get tired I should eat some ice cream and take a nap.. but I have no ice cream and I have supper to make.. because either way .. I have things to do.. and those hugs keep me going from day to day.. and perhaps all that makes me so angry will fade … it is a bunch of pain.. and so it goes.. hug time..