It will be two years since I applied for social security..six months since I found out that they thought I was dead.. could be another six months before the hearing where I can say that I am not dead… but what about now.. WHAT ABOUT NOW!!!! We are five hundred dollars short this month.. five dollars is a bunch when you have no money but FIVE HUNDRED DOLLARS.. that is on the range of the only way that money is coming in is through the sex trade.. and I am not allowed.. so I checked into writing books, but the only thing I can think of is erotic and it takes six months to get anything answered. It is not like we are sitting around eating sushi and eating bon bons. Maybe sushi from the grocery store but really.. I have saved and scrimp, and laffy taffy pulled the last dollar as far as it will go.. DAMN IT!!! It doesn’t end.. and not just with me.. i feel stressed then my children are like I am never going to succeed none of my friends like me, I am never going to get through collage, high school, middle school, the people in the show choir call me slave jokes for being in crew.. it is hard enough to keep the group going ion the same direction it would be helpful if that direction was not self deprecating and suicidal. Laugh if you will but I am going to go ask a good man to pray for us. Perhaps if more people prayed, more people would be heart felt lead to drop off potty paper at our front door! My God sex trade is an option but really? Can’t even afford the live webcam or computer for someone to pay to watch me what sleep naked??? All my life.. I have served other people..I pray for Yemen.. lets hope they still exist in a few months… along with my house
the sun has come out today for the first time in four days, it is not raining and the wind has slowed to less then ten miles an hour.. I am alone in my house. I have cancelled all my plans for tomorrow as there was nobody to go with me.. I can’t afford four or five of my medications. I don’t say that much because I am always more concerned about providing for the kids needs.. the brother of the man whom infected me quoted Bible text at me.. Job.. from far across the sea. Things are bad all over and worse in some places and I realize that but don’t quote Bible text at me, please… I need support, a friend, gas money to get to the doctors, to afford the medication I should be taking but can’t afford, to pay for my kids shorts, shoes, a tricycle for the baby, socks.. why are there never enough socks??? And why do people swear so much on Twitter?? People pray to their gods, hug their trees and hope that it will all be alright.. but the idea that they might have to do something doesn’t cross their minds. the idea that they have ten million dollars or a fifty thousand dollar watch doesn’t ever cross their mind that perhaps their god answered their prayers by providing the means to answer the prayers that they so often offer to the heavens??? Heaven help the poor. What do you suppose heaven gave you that ten million for? My AIDS fund are empty… quote what you want but leave me out of it.. there needs to be some back up to the thought, some thought into what you can do.. the AIDS fund people do not give money to people with HIV, that they can’t do. God knows we were what.. stupid enough to get HIV now we must be too dumb to know what we need to spend money on??? I appreciate the thought, I have great hope that it is only in my area that this occurs but am scared that it is not.. pray and pray and pray… when will Publishers Clearing House come to my house? Because my AIDS funds are empty.. because I am empty… because soon it will not matter… pray hard people… pray hard
I went to bed at a decent time last night and processed not to sleep.. night sweats are wonderful things when they come with low grade fevers if I lived in Siberia! I then went to my not so local ADAP office with a bill I needed assistance paying for when I was ill and in hospital the baby had to go to daycare for extra time total of 65$ of time.. but nobody can use “their AIDS funds” to pay this bill. This is why HIV+ people are OD on drugs at a higher rate then people without. Not saying that every life a bit of static must fall but the tumble weeds have turned into sheer straight line winds and I am having difficult hanging on. How do I get a wealthy benefactor? Or even just a well off benefactor? My oldest son loves Jason Dirulo maybe he would be up for the task? Perhaps providing a good role model for my sons along the way, playing basketball or reading the same book so they can discuss it, or volunteering together at the food bank. I don’t know.. and yes I understand that 3% of the people have 97% of the worlds wealth but on a day to day trying to live a life that means shit to me. Sorry for swearing but my day is done and I have very far to go still. No way to cover the cost at the moment. No way to cover the cost.. family values goes deeper then just being pro-life.. at this point most of congress is like kill them all and only the healthy ones will be alive and then health insurance will be super cheap.. WHOSE IS IT THAT GIVES THEM THE RIGHT TO THINK THAT MY LIFE IS OF LESS IMPORTANCE? WHO? I have to go now and figure out what I am going to do about the world.. I was intentionally infected by a man on a permanent resident card, me and about 15 others. INTENTIONALLY INFECTED.. He was running a very long con. Now I am bankrupt, jobless, totally and permanently disabled as defined by the Department of Education and there is no room in any of the “helpful agencies AIDS funds” to cover a daycare bill for when I was in hospital. Tell me, Not enough love in the world???
It is the 17th of the month, the rains came today and the backyard has a lake in it. There is no word from the disability lawyer yet. The shady university sent my Perkins loan to collection even after bankruptcy a a total and permanent disability status from the Department of Education.. arguing with me about the rules.. I know the rules.. then I read about the number of people who have died from drug overdoses as the same number as were dying at the height of the AIDS epidemic and it went on to say that it was mostly HIV/AIDS people dying of the over doses because their world has stopped while everyone else has gone on around them.. and I understood the feeling… everything has been taken from me and I am not sure how to get anything back. The bank is overdrawn by 40$ now, the disability is still a no show, the one person working in the house doesn’t get paid until Friday and she works like three hours a day for less then she deserves but, it is all we have to pay any bills with but, nobody hears me scream!! COME ON MR. SHEEN!!!!! What’s it worth to you to be on the up side of this no longer a death sentence unless your poor condition? I would really like to know! Agreed it is unfair to just call out Mr. Sheen but he was the one who responded with the greatest fear and that fear cost him his job at the top of the season. Others have come and gone with HIV and are still on top of things.. Mr. Magic is working to bring the magic back to the Lakers, people are dancing on Broadway! Money is being raised to deal with the HIV/AIDS problem but it is not being spent on the poor among us, is it? I was informed the other day when I requested assisted from the church that a childcare bill for a child I am responsible for was not something they covered because “Their AIDS funds were not for extended family members” ‘Their AIDS fund” wonder how that works for them.. do they freak out when ‘their’ AIDS fund gets overdrawn in the middle of the month? When there is no money for things that food stamps don’t buy? When there is a small child who looks loving at you as you make their whole world spin and asks for a milk shake and you have to say no! A DAMN MILKSHAKE!!!! Come on Mr. Sheen!!! SOMEONE TELL ME HOW THE HELL IT FEELS!!! TO BE AT THE OTHER END OF THE SPECTRUM!!! Able to afford the medical bills on top of the shorts, shoes and food that needs to be paid for, the diapers and wipes and the idea I may never NEVER be able to work again!! NEVER!!! JK Rowlings was all about do I kill myself or write a story that will grow into the biggest thing in history.. guess I will write and it worked for her but, where does that leave the thousands of us that are living so far below the poverty line that we cannot even see the top of the curb?? ‘Their AIDS fund’ does anyone understand why that is so offensive????? I should be making 75,000$ a year!! I Should be in a forever home with my children not worrying about the next bill, or running in shoes that came apart again because Gorilla Glue doesn’t hold everything together!!! But I am not, I am in public housing, on food stamps, fighting for my life and the life of my kids, every day!! and the older ones are fighting even harder to be able to break the circle! When I worked we gave to charity every week, figured out how much it would cost a family our size a month and we donated that to the church, the church with ‘their AIDS fund’..there are things done in silence for others that do not need to be told and I don’t know when that energy comes around again in the universe but, I am praying it comes around soon!!!
Come on Mr. Sheen!!! there are many of us out here that have been dealt this same card. We should have recognized the signs when you freaked out. But now you said yourself that you have your life back due to this trail injection… there are many of us at the other end of the scale Mr. Sheen!!! Left without the ability to work, gone through bankruptcy, all of our savings, still fighting with disability.. the lower social economic group of us!!! The ones with crappy access to doctors, care and medication.. the way that life works. So I also don’t have child support or alimony to deal with but guess what? There is nobody to pay it to me either. So come on Mr. Sheen.. lets pay it forward… support the cause, Right here, Right now!!! There is a paypal button on this website somewhere.. use it.. support the group where the rural life is so difficult that finding another person with HIV is like several three hours drive away..
Mr. Sheen I do not wish to be mean but, I am looking all around for support and there isn’t any.. and I am tired!!!!! I need to provide not only for my family but for others that are in this same situation! I have a plan but I need funding.. the type of funding that you could provide.. so please Mr. Sheen… come on out and partner up with someone who can promote and provide a middle space where newly dx people can catch their breaths and build a support system..
Mr. Sheen be the start of my good week… make a new friend.. repair some of the damage you have created and bring a good thing to life…. To The fullness of creation… come on Mr. Sheen.. bring it on!!!
So I have spent two weeks with the nausea and vomiting and the constant going to the potty to sit and have the most poop in the world fly out of me!! Everything freaking time I eat I have to go to the bathroom in like ten minutes and then for every twenty minutes after that.. I don’t feel like it is exciting to be a live, and my PTSD is getting worse at the night time as I think everything is trying to kill me. I am very stressed and not into the idea of methadone for treatment of pain.. this messed up treatment of pain for people who have pain makes it impossible to be treated for pain by your doctor.. I haven’t taken any pain meds this day and am sure my blood pressure is freaked out.. I am also so very distressed at how people are swearing all over twitter and facebook and in public forum! What happened to the kind and loving of people.. hugs not shooting people.. it is just so jumping the shark..
I am tired of being tired.. I would like to be able to walk without pain, I would really like to not be worried about money, and when I say worried about money it is not like I don’t know everyone worries about money, it is that I have zero money and that means none.. none.. none.. and I would really like to be able to afford the co-pay for the meds that keep me alive but so sick.. maybe it is just the weather and once it sorts itself out it will be better? Maybe it is the lack of sleep and getting up all the hours of the day and night? Maybe it is just because I hate this trip.. and it is a noble thing to say it is just a new thing one has to learn to dance with but HIV is a crap… it is not important enough any longer to be in the public eye but it is not going away.. because more gay men are dying it is not as important as erectile dysfunction!! But it is crap.. I call out Charlie Sheen and his crap!!! Amazing how he can afford all that blackmail money, then admit to having HIV then go from cocktail to once a week trail three shot.. much be nice to be white privileged.. If you had any sense of compassion you would spend equal funds to small organizations that are working to make rural life doable for people with HIV!!! Instead of being an ass!! I am apologetic to the donkey! But There is no reason whey there should be such a social economic gap between poor folks with HIV and rich ones.. and I am not hating on the ability to raise a career before getting HIV but there are some of us who can’t work or can’t find employment or for whom their lives were just starting to make money for their family when it was snatch away!! and I have no choice at the moment but await a slow government who can’t keep their documents straight and wait. It is not fair to my family, those kids who are old enough to work should not be shouldering the hardest cost on their shoulders because some guy decided to infect as many people as possible… I am so mad!!!! And it doesn’t do anything for me!! if anyone hasn’t read Body Counts you should.. It talks about a great many things but there is a deal about how a sister is an important part of someones live and it made me weep.. weep hard.. for a family of origin that doesn’t exist in my world…. this was a week that made it hard to think that being alive was worth more then my insurance payout..
Things that should never happen to anyone have been happening to me and my family this past week. Publishers Clearing House did not show up yet again!!! Disability still can’t find me in the long list of people who have social security numbers, there are always more bills then funds and doctors appointments are hours away without any gas money but, that is just what we are used to the real problems start with the bullying at the college level so violent that young twenty year old can be so unkind. The semester is over thank the heavens but there are bloody injuries that are being tended. I have spent the last week ill. Not just off and on but all week.. starting with the snow, then the head pain and went to the clinic finally to get a shot when the PRN didn’t work, there was poo flying out of me and when I thought for sure that I could make it up I got to the kitchen only to call my childs’ name as I threw up in a box by the sink, the week went on that way. I am not really good at driving along as one never knows when the fatigue comes and I was driving home from a doctor appointment when I noticed I was sleeping and changing lanes. Oldest children now have cardiologist, there are uncontrolled asthma and allergies that make the whole lot of us a pre-existing condition. I don’t know what really to say.. it will be three years soon on the same medication and I am not going to be off that medication till I die. Medication that is to keep me alive is slowly killing me. I have not had a good week in a long time and the pain of last week was awful. My sister wants me to order CBC from Amazon to see if that helps. We have no money, none, I want to believe in something but I am tired of being alone. Nothing is worse, PTSD and I are learning to dance, I work on growing tomato and watermelon seeds, but the outbursts are so nutty to me.. I used to be calm, and able to get everything done and do things with kids all the time.. now I blow my top over the smallest thing, triggers are things I am identifying and it is difficult to find an option to do when running across a trigger out and and about especially with the kids… swear, does anyone know of a match making HIV+ site that matches up Americans with HIV+ folks in Canada? Save a life, perhaps a family? The social-economic gap between poor folks with HIV and affluent HIV folks, it is just as dangerous has the top 1% of the world population having all the wealth of the bottom 67&.. if anything HIV+ gay, straight, bi, panfluid, whatever, we should be taking care of each other as some of us have nobody who wants to even do anything but watch us die… HELP us get to our group.. where are you all ?
It is a journey life is. This last week was a totally mess up from the kid with strep that ended up in the ER to the lack of school testing time and the broken this and the no money for gas that. I have been informed that the new doctor at the clinic affiliated with my hospital has “respectfully declined” to see me as a patient. I respectfully am pissed off.. there is not enough love in the world. This week is full of doctors and when you end up in the ER it doesn’t get better quickly, everything that got postponed or cancelled not needs to be reset up and there are other things going on in the world. I have six dollars in the bank, no gas in the car, no doctors that are close enough to get to and I am really just tired.. I woke up this morning and went through the where am I and what day is it routine. I remembered this afternoon that all that I had thought happened that was a good memory was just part of a vivid dream of terror.
I am thankful for the assistance I do get from my primary care doctor and therapist but that is the group that tells me to just not give up, or that I need to move. Tomorrow I have to sign another lease meaning another year of being here. Also, since the landlord is not kind or polite he refuses to change out the windows in the bedroom to make them code so now nobody can sleep in that room.. and while he never did do a good job with the snow removal at least I didn’t have to worry about it all the time.. now he is not even doing that, and he raised the rent.. because why not get more money off the poorest all while doing nothing to fix the basic safety issue? Part of me wishes that I would fall over dead in the house so that he could never rent it again without disclosing that someone died here.. but I need to be here for my kids and they need me here for their self sanity. I just wish that it was better funded.. and full of less evil landlords..
lets talk about what we could do during any day or during pride week day, shall we. It is so much fun to pick up a magazine and see something about how a person living with HIV is doing so well. When is the last time you read a great article in Time or NewsWeek about the joys of living through the plague? You haven’t. The closed you may have found is a small story in USA Today some three months back that speaks about what a good basketball player that could pull the LA Lakers out of their slump. Standing in the midst of the locker room that he retired from should Magic Johnson, looking healthy as ever and employed. Not one word about his HIV was stated in the piece. Not one.. How sad..to be given the chance to be “greater than AIDs” as CBS states when they care.. to put that stigma down just a bit. I pray that just once one of those CBS cares’ people or just anyone actor, director, music person.. Please Don Henley drop me a line… I have a heavy load and I am unsure I can bare it.. alone.
But enough about me and that.. this is the time when I begin to think that it is only together that a difference can be made. Protest songs I learned coming up, “reach out your hand, make this place a better world. . . if you can” there isn’t much reaching.. The time has come when folks living with HIV will be in need of services to stay in their homes, nursing care, assisted living.. some quality of life that we cannot even get when we are young and mostly alive!!! Think about it people, the newspaper publishes the first person with HIV lives to get Alzheimer’s and everyone applauds? Why? Because you feel safe that even if you or a friend gets HIV that you will still live to be old? That a person who depends on medication to keep from dying but from killing others as well now can’t remember they need the medication? Because they will not remember that they have HIV? Why is there applauds?
Where is the real change? Where is the investment in holistic training for doctors, nurses, healthcare providers? Where are the retirement communities with the hot tubs and the dance halls, art rooms and day trips to Broadway? Where are the Assisted Living areas where families can still be families. Largest section of the population are the baby boomers, who cares? What about dignity in dying, that many of us do not get in life? Where is that? That is what I want to know? How can I be a part of that? Before it is too late at that Sad Cafe…
Tomorrow is the beginning or the middle or end of some sort of religious event to a large many people. And I wish them peace during this time of celebration. I would like to ask a question. When you are celebrating that new life that new start that has been promised to you, that rebirth of spring do you ever think about anybody else? Ever? The mailings that come from feed the children in Africa to end the educational gap and the latest stat for kids missing school… not having clean clothes. Does anyone every think of them? Of us? I bring this up as I am in dire straits and am very frustrated with humanity today. Everyone knows I have children, I also have been blessed with what is titled a ‘fragile child’ which means that child is ill a lot of the time. That child can’t go more then ten days without something, usually breathing related.. and there is their allergies to nuts. So that child while already ill was accidentally given a part of a nut candy bar last night. And so God help us one and all that person went home while the three oldest in the house held the baby, washed the baby, gave the baby meds, watched the vomit and poops explode, get the epi pens out just incase, cleaned up after said baby and then held the child till they finally fell asleep at 430 this morning. As I lay trying to not throw up myself this morning because as you know if you don’t sleep long enough your medication will make you sicker, the phone rang! And I said to myself whoever this is I am going to kill.. alas it was my property management person who phoned to inform me that the landlord does not want to replace the windows in the bedroom so that can not long be used as a bedroom, maybe an office. The house is a 4-5 bedroom house but the one bedroom has no closet so it is not really a bedroom so that drops the number of rooms to three bedrooms. Sixty days and the inspectors will return, all the beds must be gone from that room. My landlord is a strong catholic man, from a rich catholic family. However, he is not replacing anything from the ceiling fans that didn’t work when we moved in to the washer and dryer that I was told did work when I moved in but did not in real life. But Tomorrow is a holiday for so many. I will not be able to go anywhere. I spent the day freaking out about where I was going to find someplace to move with all the kids in less then six weeks when the lease is up? But that cost money. If I die in this house then the landlord can’t rent it unless he informs everyone that someone died here and as I will be dead I will make it know it was from HIV.. I am not an unkind person my nature but I am on the edge here folks. I need some examples of the religious discussions – an invite to an Easter, Passover or just a Sunday lunch.. better yet just someone to drop off the lunch. A house that will not be held by a judgmental rich white man, maybe he just doesn’t like black people. I do not know. But I do know that a leased signed is another year, I was not looking forward to that either but life is not always neat. The birds sing early around here, 2 am in the morning.. they are up and singing.. I need to sleep and will need all the assistance I can get in finding a home..protecting my kids, and making the day a good day, for as many days as I have left..