Hello Again
I'm very glad you could find the time to join me here. I know that this is not a fun site to visit and I will try to keep it as upbeat as I can. Even I don't like to be brought down. My hope is that by telling you some of what goes on in my daily life of a person with HIV and HEP B you will learn what it is like to lose control of every day life matters. It's very hard for me to sit on the outside of My life and watch it go by, having only slight control over it. Yes I am still "with it" as far as my mind goes. Well at least for the most part. I'm not talking about the ability to do things but the means to do them. I have always supported myself, in most every way. Now I can not work. Sence I became Ill I have had to fight for every penny I have gotten. I know some of you out there feel that I got myself into this mess and I don't deserve a penny. The "You wanted to dance, Now pay the fiddler." theory. Well I would but the Fiddler died of AIDS a long time ago. I have paid into the system for 18 years. I won't be around at 65 to retire. Point blank, If I could work I Would work. I'm not lazy. Back to the subject I'm drifting again. So yah money is a big problem, but it is not the only one. There are the social issues. People can really be jerks. You might ask me if I tell people when I meet them thatI am HIV positive. Not any more I don't, not right off any way. Why? Let me tell you. First it is "that look" in their eyes. It's one of two looks, the first is pitty. You know when the top of their eyebrows crinkle to the center of their forehead then dip down toward the bridge of their nose. The other is fear, when the eyes bolt open and their pupils bulge, their lips part ever so slightly as the breath escapes their body. Then they look at the hand you just shook, their's!! Suddenly they don't want to hurt your feeling and begin to talk about the weather. Or the " Oh my God, well how are you doing? How bad is it?! Well folks, heres the scoop, It's perrty bad, in fact it's terminal!! It's going to kill me if I don't get run over by a run away train first. Sorry about the blunt honesty. After the shock wears off one of two things happens they become a friend or they make excuses for not being able to visit with you until you just give up. Most of this comes from a lack of education. Lesson 1 in HIV: You can NOT get it from casual contact. NOT from a hand shake, NOT from a hug, Not from a sink faucet (unless the infected has bled on it AND you have an Open wound on your hands) Or for the most part NOT a toilet seat (again, Body fluids Must be on the seat and You would have to have an Open wound in the place of contact, Or sit on the seat in a very strange Way), and you Can't get it by talking to them. I know this all sounds foolish, but there are people out there who Don't know this stuff. Ignorance Hurts more than Honesty. Most of the people I meet Hurt me Not because they want to, but because they just don't know what to do or how to act. Here is a clue, Treat us just like we were "normal" After all WE ARE!! We just have an illness they have not found a cure for yet. Other than that We are just like any one else. At this point I would say I am side tracked again but the fact is I'm not. This is some thing I have to deal with every day. If you don't have this illness it's hard for you to imagin that people could be like this, but they are. Please, Teach, and teach your childern well, Not to fear People with HIV and AIDS.
This will start the Day to Day things I go through. What a week this is turning out to be. Lets go back a few days when every thing started to go to hell.
Wednesday, Sept 2, 1998.
Shawn came over to stay for a few days. This is a GOOD thing. Perhaps the only one this week but if thats all I get for good this week it will be enough. At 11:00am a Realtor called the house and said he would be by at 2:30pm to show the house. I informed him that the house was not prepared to be shown. Had I even known that the house was on the market to be sold would have been nice. I was never told by the landlord that he had put the house on the market. He said he understood and would be by at 2:30 to show the house And that I should do the best I can to have the place ready. "Yah Ok right, Right up yours!" This was a thought not words. Well after wearing mysefl ragged trying to get the house in presentable condition they came saw it and left. In the mean time My landlord calls me check in and see how things are going up here. Through the whole conservation he fails to mention the fact that the house is on the market. Not one word about it. The strees in me is swelling to new hights. By the time I got off the phone with him I was ready to scream. He even asked me to fix a few things around here befor this winter. The entire conversation went off like he was going to keep the house for another year. He had no intention of telling me a thing. Anger, Anger,... Stressed out, angry and fustrated, I felt the need to get out fo the house. Shawn and I went out for a while. We thought going out to dinner would help releive some of the stress. A bad day in all. I ordered my meal and asked that the fries be cooked well, Crispy but not burnt. When they came, they were soggy, limp, an COLD. When I ask if that was the best they could do I was told "Looks like it, must be I put well done on the slip." I forced my mouth to not say a word and ate. When I was done I told the waitress that the next time I will send them back till they are done right. We left and came home. Spent the night on the computer working on his home page, (If you have not gone there yet please do. Be sure to sign his guest book and tell him you were here.) till 1:00am.
Thursday September 3, 1998
Well it's not the greatest of days today either. This morning I was told that the landlord is putting the house in the paper for rent. I will have to move out as soon as he find a new renter. He will give me 30 days notice. How f-n kind of him. I have lived here for almost 4 years and up until several months ago when I became really strapped on money I had always paid my rent in full. Now I give him what I can he said that was fine with him. He must define "fine" Alot more differently than I do. I even tried to get the house section 8 approved, and I got it. He never got the papers back to the agency untill after the certificate expired. So now I have to find a place to live with no money to pay a deposit or to change the utilites over. Blah Blah Blah. I'm not what you would call a happy camper. I really don't kneed this shit right now. Oops sorry about that. Things are just not going well right now. I'll right more later.
Friday September 4, 1998
Today has been a littlle difficult. I have had a hard time consentrating on any thing. It's days like this I wish I had my whole mind again. Some times it's not a bad thing to have a blank mind. But it wasen't really blank today, just full of incomplete thought. I went to the store this morning to get something and I went into the store Twice and could not think of what it was. So I got a bag of chips. How often does this happen. When I got home I found 2 more bags of chips on the shelf. I'm still having a hard time with my thought so I will close for now. Maybe more later tonight.
Saturday September 5, 1998
Today I got to have what I call "fun". I got a letter in the mail from my local Senator asking for my vote. This is what I wrote back to him.
I recently received a letter asking for my support in the coming election. I want some thing in return for my support. I want Your support in the fight for my cause. I am a native Vermonter who is living with an HIV infection and Cronic Hep-B. I have been fighting with Social Security for My disability for nearly 3 years. I have been unable to work sence April of of the year I filed my claim. I have had no income in the last 2 and a half years. NONE save for what I get from welfare. Which in case you did not know is a mere $198.00 a month for housing and $60.00 a month to live on Oh yes lets not forget that whopping $122.00 a month to buy food with. One of your campaine diners cost that much, a plate!!! and thats all I get for the whole month. Tell me, whats wrong with that!!! To My point. My rent is $500.00 a month. I had to sell every thing I owned to pay all of my rent for the first year and a half. Well sence social security won't grant me my claim and I can not work, I am now falling behind in my rent. The landlord is now going to evict me for lack of rent. I have no place to go. No money to pay for a new place and nothing left to sell to raise the money. What would I like you to do? Lets try some thing useful for a change. I know how much money the government waists every year on a wide range of stupid things, One that comes to mind the mass amount of money spent on trying to find out who has their hands in who's pants. It's a privite matter. It has nothing to with ability to preform the job he was put into office to do. At any rate do you have any idea how many people that much money could have helped. Do the math. Take all the Millions of dollars spent on that and divide it by 6,000,000 people on welfare. If you still don't think that much money would make difference to people like me than you should try to live on what I do. $380 a month, I'll bet you spend more than that on a suite. Thats $4560.00 a year. Even the tax department knows a person can not live on that. They even sent me a letter informing me that my income was not enough for a person to live on and needed an explaination as to how I could survive on that income. People like me need help from people like you in order to make it through these difficult times, while S.S. is dragging out the process in hopes that those of us who have this infection will Die before they have to grant the claim. It's not right and you have to do something about it. It's just not right that you get to eat a $150.00 plate of food while people are dying because you won't give them enough to live on. What can you do? Write a Bill and get people with HIV and AIDS money to live on. Get it passed and you will have my support and that of the Many Vermonters who Live with HIV and AIDS and thier families. We need help and we need it NOW!!!!! This is a crisis !!!! not just in this state but in All of them. I can't see how you can ignor it any longer. Help is needed. All I ask is that you find the help and send it before anyone else has to be homeless or die.
I would like to encourage any one out there to send a letter just like this one to your Senator. If you like, copy this and make the nessary changes and send it off. I'm felling better today I got some rest last night and I am going to go to bed early tonight. Well thats about all I have to add today.
Sunday September 6, 1998
Well, Things just keep going down hill don't they. Now my landlord has decided that he wants me to move out ASAP. Well if I wasn't a mess befor I am now. What in the Hell does this guy think?! I don't have a place to go today, any more than I did yesterday! I don't have any more money today than I did yesterday. How does he expect me to move out on a days notice. I'd scream right now if I didn't have such a headach. I've got to get out of here for a while and see if I can clear my head a bit.
Monday September 7, 1998
Today is Labor day and like the rest of the country I'm taking the day off. One day just for me, no news, no battles to fight, no nothing. Just me and me alone. Days like this don't come often for me so I'm taking this one. I have to take them when I get the chance or I'm afraid I would break under the pressure. God there is alot of that. Sometimes I don't know how I keep it together. Then there are the days I'm sure I'm losing it. My whole body starts to shake I get weak and I feel like it's just not worth it any more. But those days pass. Today is a day for reflection. Sort things out clean up all the lose ends in my mind and get ready for tomorrow.
Tuesday September 8, 1998
Today was Phone call day. I called My Senators today and asked for their help in any way they could. My sister and I went to look at some trailres today to see if we can find one that I can live in. She has a peice of property that she can put a trailer on if we can find one cheap enough. I have jury draw tomorrow. That will be a joy as always. I have to wait a few days to find out what the Senators can do for me. I'll fill you in as I know more.
Wednesday September 9, 1998
Well today I got pulled for one jury in Novmeber. We got done early as there was not to many to draw for. Shawn should be here soon and I think we might go out to eat. I have jury duty Friday too. I expect the next time I have time to write more will be Sunday or Monday. Later...
Monday September 14, 1998
Well the weekend went off without any major problems. Shawn can back up on Friday and left to back to work on Sunday afternoon. My sister and I went trailer shopping again this morning and we found one that has a reasonable price on it. It's a bit old but it is in good shape. We will have to see if she can get the loan for it now. I'll still have to pay rent but at least it will be something I can manage. That will be a lot off my mind.
A Personal Note
Unless you have been in the position I am in you would have a hard time understanding what goes through a persons mind. It's very hard for me not to know where the next dolllar is going to come from. I have always work and made ends meet on my own. Maybe I worry to much but when you have all this time on your hands you find you worry more about these things. I worry about other things too. I know what happen to people with HIV and AIDS. In time it eats away at different parts of your body. It my be your mind first or your nervous system or your vital organs. It scares me to wonder what it will strike first. There is more to fear than knowing it will happen to you. Knowing that it IS happening to you, is far worse than know it will. Going to to something and finding out that even though you used to able to it, You now find it very difficult or even impossible to do. You lose more than you ever thought this would take from you. You thought you would just get sick and die. It's not that simple or that kind. It really is a monster.
Tuesday September 15, 1998
Today my sister set up appointment with the bank to get the loan. I set out on yet another journey to get some help. More phone calls, most of which I get no answer or a referal to some one else. Then I have to tell the whole story all over again, only to be sent to yet another person. It's the roundabout. I go in circles till I get back to the person I started with, then I lose my temper and start yelling, thats when things get done and I get the answers. I hate to do things like this but it seems that it is the only way. I have put up with so much crap this last two years that I am begining to become afraid that if I try to be the "nice guy who understands every ones position" I will be dead befor I ever get the answers I need. It fustrating at the very least. No one seem to care that I need the help. I know that "i"'s need to be dotted and "t"'s need to be crossed but where does it stop. Befor, or after another person dies?
Personal Note
You may be asking "What can I do about this?" There is something you can do. Write a letter to your Senators and your Congressmen and your even your Governor and ask them to make the process move faster for HIV and ADIS people to get the help they need. Write letters to your editor of the news paper in your town to bring this problem to light. Talk to people about the great injustice being done to your friends and family. One of those people is either now or will be someday in my shoes. It's a sad fact but at this time it is a fact all the same. Just because they are "your" friends or "your " family members, does not prevent them form getting this. HIV and AIDS knows no friend and has no family. It will prey on any and all alike; Mothers, Fathers, Brothers and Sisters, Aunts or Uncles, Best friends and true loves. No one is safe. Even you are some ones friend and a family member to some one. Do something to help some one you may know. Write that letter and send it out.
Wednesday September 16, 1998
Ok My Sister got the loan for the trailer today. We will go pay for it on Thursday. I'm still a long way from moving in though. We still have to get a contractor to clear the lot and put in the road and power. With very little time and money left it will be difficult at best.
My knee has been acting up again. OH yah I should tell you about it I guess. Well I get very sharp pains in my knee when I bend it. It feels like a knife going in just under the knee cap. Every time I bend my knee to get up or walk it feels like some one is twisting the knife. If I keep it moving it's not to bad but it still hurts.
The cramps in my hand and arm are getting worse too. I've been getting cramps in my hand like you would not beleive. They come on for no reason. I have no idea why they are there now when they never used to be there. The one I get in my arm, I think is worse than the ones in my hand. The arm cramp starts at my wrist and runs up my arm to my elbow. You can watch the cramp go up my arm. The muscel rolls into a loop and then works it's way up my arm. I guess it would be cool to watch if it didn't hurt so damn much. Thankfully I only get the cramp in my arm once every day or two. The one in my hand I get a couple of time a day or more. I guess it's all part of that falling to peices I hit on earlier. I'll learn to live with it. It has become yet another hurtle in the race of life that I must leap over.
Personal Note
I was going to put something in here but I have forgotten what it was. This happens often now, way to often. At any rate I might remember it later, Then again I may not.
Thursday September 17,1998
Rather uneventful today. We went over and paid for the trailer today, took some measurement and that is about all that happened today.
Friday September 18, 1998
I got a hold of the housing authority today and found out what I need to know for the trailer set up. Still no word on a contractor to do the work. Shawn might be up today with the kids. He was not sure if they would make today or tomorrow morning, so I'll just wait and see. My knee seems a little worse so I will take it easy today and let it rest.
Saturday September 19, 1998
Shawn made it up here just after 1pm and we went and look at the trailer then did some shopping and ate out. My knee is not better by a long shot today. A few good cramps today and one of them I had to have Shawn pull out because it was so bad it would not come out of it on it's own.
Sunday September 20,1998
A day Off.
Monday September 21, 1998
Today I met with the lawyers to see if there was something they could do about the landlord and his throwing me out. Well they are going to send him a letter. We will see what comes of it. On the trailer and the lot. I worked a little on clearing some of the brush out of the way that will need to be moved befor the trailer comes. We have a possible contractor to do some of the work on the lot. He can only do the road and the pad for the trailer to sit on. That will have to be enough for now. I think the cramps are getting worse still. I having some trouble with my knee too now. I'll wait and see if they get better over the next few days. I'll write again when I know more about anything.
Thursday September 24, 1998
My knee is by far Not better. My sister and I have gotten some of the lot cleared now and today is the first day she has let me use the chainsaw "alone".
Personal thoughts:
Some times she acts like if I cut myself and bled one drop of blood on the ground the whole world would be put at risk. And she has had medical training and knows better but still she treats me like that some times. I can't even make anything for the Holidays unless it comes from a freezer box now. I don't really blame her for the way she feels. Some people just can't get past the fear no matter how well they are trained. Fear is the worst thing a person can suffer from.
We hope to have the lot ready by the end of the weekend. Shawn will be here tomorrow and we should be able to get it all done then. Well more in a day or so.
Sunday September 27, 1998
Shawn left this morning. He came up thursday night after work. We got all the trees out save for the 3 or 4 right on the roads edge. They will have to be pulled out with a tractor as they lean into the road and the power lines. My Brother will come down and do that this after noon. All in all I'm holding up rather well. I'm very sore but I have been pushing myself very hard to get this done. Time is runing out on me. I have to see a doctor tomorrow about my knee. It's really begining to bother me alot.
Personal note
In the last couple of weeks I have been alot more tired than I usually am. Maybe it's just that I have been over doing it just a bit but I can't get enough sleep and I feel really weak. It's kind of hard to explain to someone who has not been here befor. I can feel the changes that are taking place in my body. I can feel my body growing weaker as time goes by. It's not a sudden change, but I feel it all the same. I notice things that I can't do today as well as I could a week or two ago. I'm growing more and more short tempered too. I know I have to adjust to these things but I don't want to. There is a song that dates back a few years and I never really knew what it ment till now. The lines in the go as follows; "I'm only half the man I used to be, There's a shadow hanging over me, Oh, I beleive in yesterday..." This really says alot about the way this infection works. It slowly eats away at you. Day by day and night by night. I think my greatest fear of this infection is that one day it will have taken so much from me that I will no longer be able to care for myself. I don't want anyone to have to take care of me, Yes Dear Shawn, I know you would without so much as a grumble, Thats not my point. It's not so much that some one would have to care for me, but more the fact that I could not care for my own needs.
Sunday
Well my brother came down and we got the trees out of there. The contractor should be here tomorrow afternoon to put the road in and put the gravel down for the trailer to sit on. All we can do now is wait for him to come.
Monday September 28, 1998
I went to the doctors this morning and I have to go and get an xray of my knee. The doctor thinks there might be a build up of calcium in my knee. The xray is on Wednesday. I also see my HIV doctor on Wednesday too. All in all it should be a busy day. I'll write more after my appointments on Wednesday.
Wednesday September 30, 1998
Well today has been a busy one. Some of the news today was expected and some of it caught me a bit off guard. I
had the doctors appointment with my HIV doctor this morning. The good news is that my CD4 count is still the same as it
was three months ago. The rest of my blood work kind of sucked. My Viral Load (the amount of the HIV in the body) has
doubled sence the last tests were done. Though this does not put me on my death bed it’s still not good. I expected it to be
up a little but not really that much. Then there was the blood tests for my liver. Not so good there either. they were cut in
half from where I was a few months ago. We are going to run more tests at the end of October and see where things stand.
Then we will decide on the usage of meds again. I am not warm to this idea. I feel good now and the last time I was on
meds it took a lot out of me. I’m just not sure if I’m ready to try it again. I’ll admit that I am more tired than I had been
before and I don’t have the strength I had. I’m also much more short tempered than I was. But the last time I was on meds
all of these things got worse not better. The xray on my knee came out negative. Cool but if thats not the problem than
what it is. I’ll find out Friday. So I will write more then.
October 1998
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November 1998
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