There is little left to say, life goes on, traumatized or not, this blog was meant to assist me in wrapping my head around a struggle that I thought was not just mine that anybody once saw my struggle. That there would be others who understood and would reach out and offer support, apparently I was mistaken. Perhaps some other day or time it with be different, but for now am I have learned over the past few months is that it is a solitary struggle. Sadly, people do not offer support, hugs or hope but only judgement, shame and danger for those that I care about. So this blog dies, like many people infected who know, dies alone. These words I can offer anyone, whatever keeps you grounded and alive hold tight to that because there will be days,like today, when the lonesomeness of this disease just isn’t worth the struggle… solitary or otherwise!
I have a headache.. one of those pounding everything hurts and why does it make so much noise to breathe type headaches. It is beyond cold in my world and I am a bit stressed.. People say that.. I am a bit stressed.. and people are in this type of environment stressed but for different reasons. I am a bit stressed because my health is always challenged.. now there is something wrong with my blood work and it is being monitored for IDK what for because my doctor is not very talkative. But that is what I have to deal with.. I don’t feel well today and that is a shame because I was going to have a great day.. I wanted to eat something and was looking forward to having something to eat without wanting to throw up but that is out now, and I really wanted to watch the playoff game for the day but the noise and all it’s too much.. I have wash in the dryer and washer and a bucket next to the steps, the dishes are done but there is no supper for the kids, there are no older kids home till midnight due to school events a far off.. I am mad because I cannot provide for my kids like I want too but I can’t even have a day where I can eat without throwing up!! I just took a bunch of meds for which there are side effects and I am tired and will be grabbing an ice pack before heading to bed.. there is so much to do.. just to be with my kids would be something, instead of saying hey taking a nap.. keep me updated.. I just can’t get over how upset I am with the fact that my very life is just not able to do what I want to do.. slave to HIV is such a thing to say.. and there are folks with good doctors who care about them and work to get on meds that don’t cause side effects but they don’t live here. Still awaiting word from SS, that has taken two and a half years so far and it doesn’t look like there is a rush.. just once or maybe more often then that I would really like a care package of household goods and such and maybe dinner to be delivered.. maybe someone to come and play with my kids while I nap.. or just a decent doctor who gives a shit about me and my life.. maybe tomorrow..maybe
It has been a long holiday season and we are looking at putting away the decorations and tree. The lights on the outside of the house were put up when it was warm and might need to wait until it is warm again. The young lady called to say she was sorry again for the lack of support from her community as she was working to raise awareness and gain gift cards and such. Now it is just the waiting till spring is here to get through the winter will be tough. I am very much in a blah mood. So much to get through and I am just not into at the moment.. The day to day is what gets me, I am struggling with not having the energy to get things done like the dishes and the laundry and then there is the things I would love to do with the kids. I am so just trying and it sucks. Maybe the year will start with the Blue Moon this month or the Year of the Dog and it will be better. It’s easy to be tough, it’s harder to be strong.
There is nothing more then i would like to do then to provide for my family, and to have them home for the holiday. That doesn’t seem to be working so much these past few years. I work at it and work hard but children grow up and do things that they need to experience, and not working causes for not being able to provide. Holidays, they are just rough.. there are families that are gathering and having huge dinners and inviting other people to join with them in the spirit of the holiday. I pray we just make it to the other side and can still keep what traditions we have as the kids start going out on their own. I would really rather not do Christmas.. there is no joy in it for me.. but I struggle each year now to make sure that there is some joy in it for the kids.. some sense of normal.. so here is to the holidays full of joy and glad tidings for the children everywhere.. and for those of us that have been outcasted or just alone and isolated.. let it be known that there are others that are isolated and when it is time for our quilt pieces to be placed with the AIDS Memorial Quilt then maybe people will remember us, after we are dead.
Bless people’s heart they are so confused at holidays about their own guilt I think.. or that they never learned that kindness is a year round event. Not just from December 1 till about say the 18th.. then they can focus on their own celebrations believing that the best they could do has been done. I appreciate their efforts but something has to be done for the rest of the world to understand that people are people all year round.. if they can’t afford toilet paper in December they are not going to be able to afford it in May. At least not in this case. That young person called to say she worked on a letter writing campaign this year, sending out so many letters that she could afford asking for gift cards to help all the families in our area, she phoned to apologize that nobody responded to her requests,again. I feel bad for her but am happy that her spirit keeps her working on the concept that all folks are sometimes in need and that hose we speak less of and in whispers with fear overtones and just people trying to get to the end of the week just like the next person. I am tired.. I had a full breakdown last week as I signed up for holiday present assistance from a local charity but because of ill children I could not get there and they got my phone call late, so they donated all the toys and clothes that they had left to other places..and wished me a Merry Christmas! I have been unable to provide for my family from a profession that i love for two and a half years and and had a hearing last week where everyone was just being so mean and I am just on the verge as it is and that night with her Merry Christmas I lost it! It is not like I asked for games and Xboxes and such.. socks, snow boots, gloves, IDK. Am sure that there is a way for us to make it through the season I am just not sure what that way is yet… not do I want to find out.. but I am thinking happy thoughts for that little adult and their efforts in raising awareness and for people who love to give food at the holidays. I have 57 – that is right fifty seven pounds of potatoes that just showed up and bread that was moldy so it got tossed but it says something when the answer to other peoples able to be assisted is to give potatoes, over and over again! GOD help me please!! Allah reigns his blessings just as the Creator of Heaven has the power to keep me calm as no one wants another break down and all these fine Holy people along with the Blessed Mother Mary to please send some people who like potatoes, and want to give presents to some children.. socks, coats, boots, sneakers, jeans, mittens, blankets and the such.. yes they do like to go to the movies and to fast food as well but I don’t want to be proudful.. I was hopefully that someone would just ask them if they wanted to go with them to see the damn movie.. but why is it that no one remembers the single parent kids when ever they do anything? HEAVEN HELP ME PLEASE WITH A HAPPY THANKFUL HEART.. i REQUEST HELP, A HUG OR TWO WOULD BE NICE AND LORD i NEED A HAIR CUT..
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….