I don’t have anyway to get to the doctor appointment tomorrow, called the ryan white people and they were like we will call a cab.. so I waited for the information and then I got a call and it was like I will send you the cab number on my personally phone and then in the morning two hours you call.. So it is the day before and I called the cab company and such to make sure and they were like we need it paid for and you really need to set up today due to the weather.. so I called the Ryan White people and then they were like no not going to do it till tomorrow.. and now I have no transport because the cab won’t come tomorrow unless I book today, and the Ryan White folks won’t send the form for payment until after business hours today.. so who does this hurt? Killing yourself is not a positive coping skill.. we also need milk, OJ, eggs, tea, lemon juice, sugar, along with some toothpaste, toilet paper, two tires, laundry soap, snow boots, you know things that money would buy if I had any.. and don’t I wish I had some.. or a way to make some.. but no, I have to be in a state where HIV care sucks and the state is trying to kill me.. I am tired of working on getting things done only to hit wall after wall after wall.. just keep telling myself that killing myself is not a positive coping skill.. besides too many other people are actively trying to do it for me..
this state wants to kill me.. quite literally. Most of you might know that I have been ill since Spring of 2014… I worked for another year trying to be superwomen but the end of June in 2015 I applied for Disability from Social Security. In the time it took to get turned down the first time I received word from The Department of Education stating I was Totally and Permanently Disabled. That was interesting, and it took me a while before I found out that Social Security turned me down because someone stole my identity and that person died so Social Security had thought I was dead for like ten years.. during that ten years I had a child and paid taxes and just all sorts of things. So I have a family with little children in the K12 age range and there are more then three but less then ten and at a time when I had just received my professional degree and I was looking forward to making money to provide for my family.. Suddenly I was unable to even leave the house much less work even 24 hours a week and I was and still am so frustrated and angry..for who would not want to provide for their family??? Right.. one of my children had a mile stone birthday yesterday and I could not afford a cake or the ingredients to make a cookie or cake or anything… my child who has walked ten thousand miles in the past three years during me being so ill, and even when I am vomiting in the middle of the night or pooping on the floor their they are there to assist in cleaning up after me, the mother! Something that should not happen for another forty or fifty years… but there they are, my little baby child, holding my hair back before it all fell out.. and then the baby turns a milestone and I have nothing to give them..
So at this point I am as low as I could be right.. but, no the state has to have that last punch.. a couple weeks ago I was asked why I was not on TANF? So I called to say what up to my social worker.. so she called me back after several days and said to me.. the following “Well TANF is a working program so you have to go to the department of Labor to fill out an application, then they send it to us at social services and then we schedule an interview to discuss and since you cannot work (as I have stuff to support that point) we have to gather all your medical records and send them to the capital of the state to a DICK committee.. that is the abbreviation for determination incapable etc blah blah and then they look over the medical paperwork and decide if you are unable to work and then they decide what amount of TANF you would qualify for.” WHAT THE HECKIED HECK STATE OF MINE!!!! Two and a half years, I have struggled from day to day to cover expenses for a household full of kids as a parent who is devastatingly ill only to be told that it is possible that while not much ($760 a month) that would have changed the stress level the whole damn situation for the past two and half years!!! Nobody expects disability to take longer then pregnancy much less two pregnancies but when it becomes apparent that it is going to take longer then a few months one would think that your case worker for Social Services would be on the move to be helpful!!!! My Caseworker knows I am dying.. and for HEAVEN SAKES I AM DYING!!! get over the idea that nowadays nobody dies anymore from HIV!! because they DO!!! And try and working as hard as I am I am not beating HIV, HIV is beating my ass!!! in the last eight weeks I have broken bones in three different areas of my body!!! Jello is my best friend and I can’t leave the DAMN HOUSE or WORK!! WHO DOESN’T WANT TO WORK! So now this STATE says. JK we could have been assisting you for the last two years but we would just rather watch you DIE!!!DIE BITCH DIE!!! So I am on the verge.. I believe in higher powers and such and I have always said that my situation gives others the opportunities to practice their faith – What you do for the poor or those in need you do for me – type thing so I am standing in the need of prayer.. not just people praying but people living their faith! Just a few folks that want to take a few children/kids shopping for clothes, for the holidays, for dishwasher soap, toothpaste, winter outerwear.. just gift cards for Subway or Dairy Queen.. because when I am throwing up for three or four days I am not making supper for kids that still need to eat and what a surprise there is not a person showing up with Tupperware.. or hot chocolate or a sweet tea.. or a hug..if you knew the last time I was hugged am sure some of you could not even count that high!!! If my landlord found out he would throw us out.. PEOPLE DO CRAPPY THINGS TO PEOPLE WHO CAN NO LONGER DEFEND OR SUPPORT THEMSELVES IN THE NAME OF RELIGION…yet each prophet, messiah, messenger of the Lord always says the same thing—do unto the poor, needed, dying, desperate as you would do for me—- and that is where most white christian males just drop out.. because to mess with a mans money is dangerous–ask them to give it away to the poor and suddenly they would rather spend money on jails and forced permanent birth control.. read your history.. Tomorrow is World AIDS Day.. I remember many people and will say their names if I can make it to the chapel to sit in solitude because there are no remembrance services anywhere around me, not a blood drive, not a nothing.. DIE BITCH DIE!! thank you state…
But I am not sure what to do to make that work? Ever since I have been dealing with HIV it has been a mad house of the virus attacking this, and the doctors saying oh the medication will get there. Then two years ago the doctors’ said that the medicine was not working like it should but that this was the best medicine that “we” had so that I should be aware and adjust that this is going to be the best it would be and that I would die of liver failure, heart attack or a stroke, and that there was nothing else to be done. Stunned I was to hear this man who was suppose to be in charge of saving my life tell me that there was nothing that I could do and that I should just suck it up!! Since then the virus has caused joint damage in my wrist, fractures in my lumber spine, my knees, my foot is broken now, there is damage in my gut and the idea that one throws up three to five times a week in a good week, well that causes damage.. the masses in my lung that is just HIV messing about are not getting smaller and have gotten more in number, the spinal cord lesions have been there one moment then moved the next, the breathing difficulties, the insomnia, the vivid violent dreams, the night sweats all of it.. just suck it up!! What kind of person, what kind of doctor says such a thing? What am I suppose to do now? It takes all I have to just get up in the morning and assist with the activities of daily living but no one talks about this anymore.. people believe it is not a problem and that after a few years on the medication you are just cured! Wow! No you are just dead, that is all, just dead. I tried so hard this weekend to stay up with the kids, they were laughing and playing games and movies and we cooked and there was singing and such.. but it was all I could do to lay in bed and just listen to them laughing. I do deserve good things to happen to me but how is that going to work? I worry about the kids so much.. the older ones struggling to get to the point where they can be helpful and the smaller ones who are not aware just trying to figure out why their mommie is sick so often? And how hard we fight to just be sick so often… this is all so pitiful. and there isn’t any assistance for anything. The state Ryan White program just asked me if there was anyone in my area that was providing assistance for people with HIV..how can one group in such a small state get so much money and not have any to spend on the people they are suppose to serve that they source them out to others!!! My life is a struggle, as are so many others but, Sweet Heaven of Blessed Mary either assist your struggling children or show us the other way?? This is how terrorists are made..
Huston we have a problem! Over the weekend the tires went flat again. There is too much tread loss and steal showing to be safe to drive the car out of town. We only have the one car since the semi took out the other one. Due to whatever reasons.. trust of a promise, selling whatever is left, waiting on disabili – there just is no money. What is worse then that is that due to the promise of trust that did not occur while the bank paid out the cost of the four things that went through they also charged over draft charges – which is what they do. So even if and when the promise of trust arrives I still will have no money for the fees of 140$ on top of the bills that were to be covered with this promised trusted. There is no car to safely ride about in, I have cancelled doctor appointments, which we have learned are all outside of town for four days now. I emailed my priest to ask for assistance.. when you are in a corner struggling you see the idea of three Walmart gift cards for 100$ each as a saving miracle. That would cover the tires and wipers (200$) and then the other would cover the lack of toothpaste, shampoo and conditioner, body wash, dishwasher soap, hand soap, bleach wipes, vinegar to clean with, laundry soap and dryer sheets, gloves and snow boots for a few kids.. as far as I could stretch it and hopefully some gas besides to make the doctor appointments. the priest said.. no. I admit that I can’t get to church, I do a Wednesday Mass at my local Newman center but I watch daily mass on the TV.. last week when I was sign in bed for five days and barely able to get out for another five I still prayed. The local Ryan White groups also says no because the car is used for people other then just the one with HIV – we only have the one damn car, seems they would rather not assistance. I don’t know what to do? I have MRI’s to check on masses here, fractures there, doctors to see here there and everywhere and surgery. There is no taking the bus, we don’t have one really and if we did, we have no money.. remember over drawn at the bank. oh how I hate that so much! All that I have worked for and I can’t fix this – this is up to God and apparently no the one hanging out at my church.. I promised a different priest not to kill myself but when your life insurance policy could pay for winter clothes and toothpaste where your parish is like umm nope… it gets a bit confusing, disheartening, isolating, worthless, untouchable or outcasted..so starts the holiday season.
we ran out of toothpaste right, well again seven people in the house.. i forgot if I have said that for the last 8 days I have been throwing up and such with the medication side effects and then I have to lay in the bed and not sleep but too weak to get out of the bed to do much and still tend after several small children as well as a few older ones. Anyway, after all that I got to the doctor and I lost 8 pounds in a week and my blood pressure is tooo high.. so come back in two days.. lost another pound, and my blood pressure is better but not great. so come back next week and try try to eat something.. deep sigh.. so in the now up to 10 days that I have been to weak to do much the house has run out of toothpaste, shampoo and conditioner, light bulbs and they are so important to have on hand at all times, cleaning supplies, totally behind the laundry scheduled, and the shopping has just been hit and miss for food. God Bless Food Stamp Day Finally!!! which we are grateful for along with the house and the heat and access to education and healthcare but I am tired, weak from lack of food, sleep, you pick your reason. Then move on to the solutions for me. I have to go back to the doctor next Wednesday and then the week again after that perhaps by then it will be alright. I have sever allergies and asthma in my house and I have called in all the refills I need for everyone but I don’t have my co-payment to pick up mine so I just haven’t gotten any yet which is just not right.. and I will have to go and just say I don’t want mine right now and pick up the others until we can get the co-pay to start to get them again. It is not that much under ten dollars but when you have no dollars finding ten is just like waiting on the spirit from Christmas….
we don’t have any toothpaste.
Seems that not everyone is as up to date with facts of life with HIV as others. I have a chiropractor who I think is a good chiropractor but they believe strongly that after some magic numbers of years on medication a person is just cured of HIV and then life is better.. like magic.. I work on changing that perspective but it does not work.. They said to me yesterday after I just spent six days throwing up and other things that are no fun, have lost 8 pounds so far this week and still eating only crackers.. think I broke a rib fro the throwing up.. all from the medication.. but they said to me yesterday that “as long as I take my medication and not have multiple partners I should be alright.” Okay, is that a statement on how you think I am living? Do you think I am just busy with multiple partners??? Would it surprise you to find out that I have had just two??? One that died over two decades now and then I waited 17 years to date again because I had children to raise? That after 17 years I dated for what five years before I discovered that it was all just one big lie?? There is so much that people say that they just don’t believe.. Lip service I believe it is called.. I am fighting everyday for just another day but once someone finds out that I am sick there are just places they go that are no good!
I am tired, but that is what the fight looks like my child said to me the other day about all fights that wage against oppression. I am literally drowning here while the concept of disability is debated by federal agencies, that can’t even agree with each other! I have been totally disabled by one for over a year but it will be another month before the hearing for Social Security Disability comes around. AN OTHER MONTH!!!! That is another 30 days of running a seven person household on less then 500$ a month! How do you run a household on donations and good thoughts? The answer is that you don’t! That the kids don’t have winter clothes or that the baby needs this or that or that the tires need replacing, or that I can’t pick up my medication from the pharmacy because I don’t have the co-pay.. go ahead and tell me about the holiday season and I will give you a list! And it is just not me, there are several families in my town, in isolation and desperation to just cover basic things while fighting to stay alive! We are not harlots! We are not families less deserving then others!!! We are just families on very hard times dealing with a disease that makes even the doctors that treat us nervous that if the public found out that they treated someone with HIV that they would loose revenue! I am sure that is the reason the chiropractor is so very worried when he sees me. I am just one person, I am not a threat, nor am I someone to be dismissed! Read whichever Holy Book you cling too and then explain to me why it is that in such a time in such an area that so many of us are drowning!!??
Then I had a conversation with a family member who lives far away.. who was speaking about how on the TV when they talk about side effects of the medication that for example is to help you quit smoking when you are done listening to all that you are happy to go on smoking.. we talked about that for a while and about the long list of my side effects but because I am so stupid and think that people still love me… I didn’t link up what they were trying to say with what they were saying.. if the side effects of the medication are so bad.. which is the whole problem at the moment.. then what is the good of the quality of life? My life? Is my life worth the $3422.24 per month some $48,000 a year, if I live to be as old as that family member you are looking at an area of $1.5million to keep me alive.. vomiting on a daily basis, pooping my pants, not sleeping, terror filled sleep when I do sleep.. joint pain, and whatever the list is that is so freaking long.. so now I am just frustrated.. alone, isolated, the people who do know don’t care – they even suggest it would be better if I just didn’t take the medication..It had been a good day.. now it is just the dark of my despair.. on less person to talk with I guess..
So now everyone knows the details of the relationship that has caused me such hell and still does but, why? Why are the details so freaking important? Why is it not enough to say he hurt me or he ended my life? Why is it so important to go through step by step the damage and look at it like some psych class.. people know all about battered women and long honey cons as they look like these days but it is not that easy when you are living in one. The years that I thought this is what it was suppose to be, only to find out that evil is easy to make look pretty. What am I suppose to do? You know you can post an ad on Craigslist for sex and in less then 48 hours get over 250+ responses.. but post an ad for assistance because your dying and nobody replies. One person might say look into social programs. Guess what you live in AMERICA dummy, we don’t do Social programs.. have you seen congress lately? We do millions for the millionaires and death for the poor. What would our forefathers say if they could see us know? Fought and died to protect the sense of liberty and freedom and protection of people. But now you can abuse and kill people if you are white or a cop and get away with it and people are surprised? Like it hasn’t been happening for the last hundred years. My life is my own but it has been damaged. I have spoken with more HIV people and programs in the past two years then I can count and there is nothing. One single mother, unable to work, fighting varies illnesses on top of some serious trauma, working on keeping her kids out of it, so that they are not targeted, scared or any of the other things that a child could be when they find out their only parent, their mother that they love so much has been abused, beaten and raped by the person they thought loved us all? I am just one person, one person – raising five kids and a granddaughter – Why is it that nobody cares? I go to church when I can get there, I pray everyday for several hours but it is scary to think that nobody is going to stand by me, say my name or even assist me with the most basic of needs – housing, food, clothes, shelter, and the likes.. I take one drug that I need to live but have so many other drugs to deal with taking that one pill. What happens when you take poison for decades? Just to live? Makes living a full time job is what it is. Where is that blessed rest assurance? Where is that HIV family that can answer so many questions that I have? Thirty years this virus has ravaged the world, it is not done and by the looks of congress it is just getting it’s second life. Doctors don’t want you stock piling pills but hell, when there is no way to get them it gets to be the only way to stay alive, and even so you are looking at months, not years.. GOD HELP ME! and since God is busy in MEXICO and YEMEN and several other places.. can someone who reads this please assist me? Pass it on to someone who can? A kind person who would rather keep a family together and alive instead of going to McDonald’s?? Just a thought.. times are tough all around.. but not for everybody.. I am calling you out.. if you can read this and can afford dinner out.. you can afford to assist a poor family buy winter clothes..
It wasn’t enough was it that I was dating after not for 17 years, it wasn’t enough that I was intentionally infected with HIV, nor was it enough to find out that after four years of living with this man and building a house that I was not in a safe one on one relationship, nope that just could not be enough. I believe that all people can find love, or at least I did many years ago. What I didn’t know is that Anti-Social Personality Disorder Psychopathy’s like to find love with lots of people all at the same time, without ever being found out about. That is just a lot of energy that I just don’t have. Even to fathom the lies and the running about he was doing, of course since I worked nights it was I suppose easier then if I perhaps worked during the day for him to get along with other people. As far as I can tell there were at least three other full time relationships going on and the amount of one time or a few times stands is beyond my ability to wrap my head around. Thinking of course that what we had was special and beautiful. The thing is that when things go wrong it is never the fault of the Anti-Social Personality Disorder Psychopathy. I am sure that there are those that get along just find in one on one relationships but mine was not one of those. My life love began to be very upset and this was before I knew about the virus or the other people. I thought he was tired and stressed. As a person who loves their partner it just made sense to listen to him and work on reducing his stress. It was not until very late that I realized that violence and being just awful mean was part of that break down. The first time he hit me we were having sex. This might be too graphic but he was of course on top and not saying anything. Nothing at all, no loving words, no sounds of passion, nothing. He was just staring at me with a look I had never seen before, and when I asked if he was okay he back hand slapped me across my face then put his forearm across my neck and proceeded to finish his part of sex with much more force then I had ever felt or experienced before. When he was finished he pushed me over and laid down in our bed. I was coughing and scared. Just like the books all say, he rolled over and put his arm over me, pulling me close to cuddle and asked me what was wrong? I couldn’t answer him but he began to apologize, said he had a bad few days at work and sometimes he forgets and he thinks he is in Zimbabwe where growing up he had to protect himself from many things as he was on his own much of the time since he was three. Promised it would never happen again, and he fell to sleep. We all know that this is a cycle but what I did not understand is that in four years this is the first time ever I had seen this part of him – Ever.. cycles are repeated and much more often then every four years I told myself as I drifted off to sleep. The next morning he made up for it, kissed me and said “I have guests coming for dinner tonight from work, two of them and that it is important that I be there, not only for the cooking but for the entertainment of the evening.” I agreed thinking that we were going to talk about promotions at work or several projects he had going on in Zimbabwe for kids schools and women’s heart health that he liked to present for funding opportunities. This was not the case. Dinner was indeed attended by two other men but when work was spoken about it was not about SAPA or such but about Zimbabwe and the women there compared to the women here. I had never seen these two men but they were big men, over six feet and over 250 pounds. Dinner was pleasant enough they liked the food, were polite and the conversation was normal. I play this evening over and over again because I am not sure what happened or when it changed from dinner with friends to raping me as the evenings entertainment. After supper my partner and the two men spoke in the living room while I tidied the dishes. I was not paying much attention to them as I was busy. When my partner asked for the timer off the stove I gave it to him thinking we were going to play a game, I hate timed board games and he knew that. My partner asked to speak with me for a moment in the bedroom. When we got in there he was loving and kind and I was like dude we have guests. Then when he slapped me again, I went to leave but that didn’t work well. He wrapped his belt around my neck and told me to shut up, that these men were here to see what Zimbabwe could do for them and he was going to show them the power of a true Zimbabwe male and I would do best to be silent. I told him he was crazy, thinking he was going to fuck me as these men watched – that I was the entertainment. I was horrified but that was not the case, I was the entertainment but not that way. My partner of our years pulled on the belt and it tighten around my neck and I fell silent, he removed my clothes and told me that he would be the one to end the evening, I didn’t understand but then I heard the timer go off. Next thing I know the bedroom door opened and one of the dinner guests was there, he was smiling. My partner handed the belt to him, said something I didn’t hear and left the room. For the next forty-five minutes this man I had never seen before in my life, took his time and raped me. Pulling on the belt when he felt I was being too complainant. He wrapped that belt around the bedpost and used his one belt to whip me. Said he liked the way I felt. I couldn’t move as the belt around my neck would tighten. He smelled like expensive aftershave and the pot roast I had just made. He talked about how he loved my cooking as he penetrated me. He said he was happy to come for dinner after he was finished and was wiping his dick off on me. I heard the timer go off, and he laughed. The door opened and the second dinner guest came in. “Entertainment is good tonight” the first one said on his way out the door. The next forty five minutes went by like the first, he held on to the belt around my neck, remarked on what a good girlfriend I was as he forced his penis into my mouth, the tears had stopped running down my face but they made him very mad and he put a pillow over my face before mounting me and raping me for what seemed like eternity. I though I was going to die. I heard the timer go off and the door open. There was laughter and I felt him heavy and harder until he also said that he was happy to come for dinner. I heard them all three laughing. My partner shut the door and I was alone. I was scared to move for the longest time, I could hear them in the hallway. I slowly started to get dressed, everything hurt and I felt disgusting. I heard the door shut and a car leaving. I thought I was going to leave, he had crossed every line I had and I was done with him, when he opened the bedroom door. His eyes were like fire, he walked the three or four steps to where I was standing and slapped me onto the bed! I yelled at him and he slapped me again. He ripped my clothes off and was just so loud that I thought someone would hear for sure but, he continued. He had told me that he would finish the evening off, I didn’t listen, that was my problem, if I just listened to him he would not have to keep telling me things the hard way – the way they learn in Zimbabwe! It was at that moment that I noticed that one of the guests was at the door way watching with a drink in his hand. Only one of them had left. This was the end of the entertainment and he was going to express his views lets say. He was holding me against himself and I could feel him taking off his pants. He asked the remaining guest if he would like to sit on the bed and suck my titties because I really enjoyed that while he finished the evening off. The guest agreed. The next thing I know I am straddled on top of this stranger who had just raped me as he sucked on my breasts while my partner pulled my hair back so my head would stay up as he penetrated me from behind. He started talking about how all women in Zimbabwe take what their husbands demand of them to this guest, how that I was not as good as a real Zimbabwe female but that I had some good points. This made the man sucking my breasts laugh. My partner commented on how I felt and how I loved this type of entertainment, pulled my hair and asked me and I didn’t believe it but at that moment I agreed with him. I couldn’t think of anything else but getting out of what was my house! They both laughed, he pushed my head down onto the guests penis as he was about finished. They both ejaculated at the same time, I gagged and immediately felt his hands around my neck – That is not how we treat our guests – swallow! He pushed me over and kissed my head and then walked out with the guest. I curled up in the corner in the darken room and waited to hear the doors closes or a car leaving. It felt like ages and then my partner came back in, and I started to hit his chest and cry and kick at him like a full on wail. He grabbed me all up and held me against himself, he threatened me, told me that he didn’t know those guys, that he had put an ad on craigslist to find guys to come fuck me because he knew I would like it. Told me how it was my fault for not making him feel like a man and not helping with the house and on he went. I said I was going to the police and he slapped me again. “The reason I went last is that if you go to the police they will find out that you fucked me too, your boyfriend and partner, building a house, been together four years – so they will think you were just cheating on me and wanted to get me in trouble – no one would believe me” he said. I wanted to die. I said I wanted to go home, he took me to the bathroom and put me in the shower, scrubbed my body and then took me back to the bed room where he climbed on top of me saying “just to make sure” he penetrated me again saying how much he loved me and how well I did tonight and how much he knew I liked it, how very proud he was that I could take two men and still have room for him not just once but twice. I was numb. After the longest time he rolled off of me and said I could go if I wanted too. He was going to sleep there but that he would be over in the morning to “check on me”. What the hell does that mean? I left as fast as I could. I was freaked out and my mind was gone. I questioned what had just happened all the way home where I took some left over sleeping pills and went to bed. The next morning when I woke up he was in my bed sleeping. He rolled over and asked me how I slept? Now I am not saying all Anti-Personality etc people behave this way but mine did. I couldn’t figure out if I had just dreamed all that or what had happened. I was so freaked out. Nothing else odd happened for the next three months. He went around as if nothing had happened. I got an HIV test and it was negative so I began to believe that it was all a dream. But then my partner did get HIV and he completely went off the deep end. He told me later when I found out I had HIV that he was not able to transmit the virus because his body was special. I had to point out the flaw in this thinking but that is symptom of the disease of Anti-Personality disorder I found out later, that you are perfect and all others are less then you. It was another three months after I said I didn’t want to see him anymore before he would leave the country. Three months of him breaking into my house, stealing my money, refusing to buy out my half of the house, he would get hired where I was working and follow me around. This is the trauma that I have been trying to deal with along with the intentional infection but can’t seem to say to a therapist. How bad it already is to have to say I got HIV from a partner of four years because I didn’t notice his odd behavior to then have to say and yes I stayed with him for six months at least after he had me raped for diner entertainment? I am terrified and I don’t know if there is assistance for me.