While standing at the book store with my oldest daughter looking in the health section she said “there are no books that talk about HIV” my youngest daughter then said “People know all about it”, oldest “no they don’t, no one hates people with cancer because they have cancer!” Well know, I thought about that for a long long time. No one hates people with cancer because they have cancer.. there are several other illnesses a person could put where cancer is in that sentence. Then I interjected “Why do you think this is so?” I got two answers that are combined.. 1) people do not understand what it means to have HIV, 2) people think people get it because it is there fault.. most people do not get cancer because they did something wrong.
Interesting concepts for such young minds to have come to that conclusion. I know of several people who have a bleeding disorder and got HIV from transfusions. Most of the people I know this day have HIV because the person they trusted most in their life – the love they loved the most- cheated on them with someone else and then got infected and did nothing until it was too late. Yes, I have meet many a long term people living with HIV/AIDS – there is even a website – many a drug addict, many with different sexual choices but there is the idea around this playground that if you have HIV you must have done something wrong and therefore you are a no good person, deserving of your fate.
Well that is not nice.. and it is not kind or loving, not even polite. I am tired..today I am in a great deal of pain. I have been trying to move out of this state and into another state where there is a more progress view towards treatment and perhaps people in general. I thought I had a friend in a different state and while we have some things in common I am not sure what is going on.. I wanted to go and see the area and get housing and a better community of education for my kids. But it didn’t turn out that way. The state is a good one, there is housing and fresh air and such, good foods, Farmers markets, activities for the kids to do besides drinking & drugs..but if I am going to get there I am going to have to get there alone.
Well world here is a wake up call..I cannot do everything..I used to be able to work, keep house, parent & have a few friends. Now things are different..medically I can work 24 hours a week – that is it..I work a high stress job..24 hours is very rough..I am happy that I have a job but it is time to be real..in this spot, it is all I can do, and as my family is most important –that is what I do- work & take care of the kids. My house is messy, I have a few friends but they are busy but available in an emergency. But this is not an emergency.. it is just a fact of life. I cannot get everything done. At holiday times people are great with the assistance.. the rest of the year is is lacking. But when your life turns into a slower version of that which you once knew there is no easy way to figure out what to do next?
I make less money but still have the same and sometimes more needs. From shoes for kids to the blessed taxes for working in a different state then one I live in..to having the energy to do the washing.. just wacky.. I am tired, so tired, I think I said that earlier but, there is so much pain with this illness… bone pain, head aches where you pray for a ice pic, muscle pain, nausea and today is not my good day. I am in a great deal of pain, and there is no one to tell. It is not an emergency, it is just a way of life now. Hello my name is me and I cannot get the washing done because the bone pain I have in my right leg, hip and left knee is so intense I am thinking I will fall down. The pain meds only make you silly, they donot get ride of pain. I need to go to bed in twelve hours I am suppose to be at work for twelve hours and I am scared and dreading it so much. both due to the pain and the concern that I might not be able to work through the day, and I need the money.. going from a sixty hour work week to a twenty four hour work week does not pay all the bills anymore, but there are the same bills, just not the same ability.. so wake up world.. do something kind and loving and pay it forward..Heaven help all of us.. and may we assist each other to the best of our abilities..