Lisa's POZ Blog

So much has happened. I haven't a clue where to begin, so I'll take the chronological approach.

For those of you who don't know much about my situation, I'll try to paint an overview.
In the fall and winter of 2002, I had become ever more increasingly weak, and found it harder, and harder to keep up with my work duties. I was coming home every day in tears, because the bottoms of my feet hurt so bad that it almost was unbearable. Home was not to be a restful place however, as I had by this time been living with my father for about three years. He was in his late seventies, a type two diabetic, and was on a home oxygen maker for significant Emphysema. He had a large draining fistula of the perineum, and the home health agency, upon learning that I was a nurse, promptly made it clear that I would have to take on the responsibilty of gavaging, packing, and dressing this site. So upon returning from work, I always went upstairs(as I was living in the basement) to talk for a bit, dress his boo-boo, and make something to eat. I tried to make sure and put something hot, and healthy on the table each night, because he had reached a point of not doing much in the way of taking care of himself. He would literally go for weeks without showering, and it took an act of congress to browbeat him into it.
I would then go back downstairs, get a shower, and collapse into bed until time to begin again the next day.
At Christmas, there was just he and I, and it was a very quiet regular day. We had a nice meal, and we talked to my brother on the phone, as well as one or two of my kids.
At New Years, he wasn't feeling very well, and I had come down with something, so we both just kind of languished around the house. We watched the ball drop, looked at each other and said Happy Whatever, and promptly went to bed. The next two days are still a complete blur to me, because I got really sick. High temp, chills, profound malaise etc......
I could keep a fairly good track of how he was doing by hearing his movements from above, and he wasn't moving around much either. In my more lucid moments, I would make the trek upstairs to check on him, and see to it that he was eating, and to do his dressing.
I returned to work, and on the third of January 2003, I came home to an almost silent house. I changed my clothes, and made my way upstairs to find him in his favorite recliner blue and ashy looking, and barely responsive to me. He had soiled himself, and I noticed his pills still laying on the table. He had not checked his sugar levels, had not taken his meds, and had not moved from the recliner all day apparently. Needless to say, we went to the hospital.
I knew this one was very serious. I finally got to talk with the doctors, to give them background information, and apprise them of his meds, and act as a laison because they couldn't understand his speech. He was barely coherent. I spent the whole rest of the evening, and night running back and forth from the ER, to my office(in another part of the hospital complex) making calls to my brother, my fathers sister in Kentucky, and my last remaining aunt(maternal) in Arizona to let them know the gravity of the situation.
The doctors informed me that he was in multiple organ failure, and that he literally had only hours to live.
But then, they said he was unresponsive too, and he answered me when I would touch him, and talk to him. We made the decision to admit him, make him as comfortable as possible, and pray that my brother could get here in time. He was admitted to the ICU, and was placed on an IPPB machine because his oxygen saturations were in the toilet. While he was still in the ER, I went to him to tell him that brother was coming, and that I needed to go to the house unlock it for him, and that I would be back very soon.
To this very day, I still relive those last few moments almost daily. This shell of a man who had always been my champion, my hero, and my best friend, raised slightly on one frail elbow, and touched my hand,looked me directly in the eyes, and through his parched blue lips mouthed the words, I wuv ooooo.
Those were the last words he ever spoke. By the time I made it back to the hospital, he was already in the ICU, on a forced air machine, and completely unresponsive. I carry a heavy burden of guilt still that I allowed them to do even this. He had made it crystal clear to my brother and I many times, that he wanted NO nothing. No breathing things, no tubes, no IV's, nada. I allowed it for the sole purpose of buying time so my brother could get here.
I asked for a priest, even though my father had never practised his faith during my lifetime, I knew enough from being raised in a small town that was a little Catholic enclave, that he should have last rites. The priest was quite comforting, and a soft spoken man who stayed with me for a while. I was grateful for his presence.
My brother arrived, my children were about(as my father was the only male influence they had ever had) and the machines were stopped/removed.

My whole world shattered into millimetric pieces. The only man who ever really loved me, and the best friend I have ever had, was gone. I was completely alone. No friends, kids were scattered to the wind, and the only social intercourse I had was my job, and that was getting harder to hold onto because of my own health problems.
The incredible stress and grief sent my virus into overtime. I found it harder, and harder to make it through the day. My mental abilities were in complete disarray.
I was getting home each evening and collapsing on the couch in my work clothes, and slept straight through to the next morning. There were many mornings that I simply changed clothes ran a cursory brush over my teeth, and off I went.
As the spring evolved, I started looking for somewhere to live, as brother and I had tentatively agreed to sell the house, and split the proceeds, per my fathers wishes. I became obsessive compulsive about the house. I found it more, and more imortant to not be parted from all of the things that had comprised the fabric of our family as a whole cloth. Every little item had a distinct memory that coincided with it. The green hippo change bank with seventies style flowers, was the very first gift I ever bought with my own money, for my mother for Christmas when I was eight years old etc...
I became a hoarder. Not of every tiny thing I brought home, but of all of the things in the house. I could not part with anything, and I had so loved this house. All of the special moments spent in this house. The house where my father and I took care of my mother as she progressed through cancer and eventually passed. The voluminous oil paintings she had painted, the tons of little art items she had made. The lovely pieces that my father had crafted in his workshop. The little hutch he made for me for Christmas one year, when I was six. The beautiful rose garden that she lovingly attended. The bluebird houses that gave us endless hours of enjoyment. My volumes of music that I had gathered from years of playing organ for church, weddings(including my brothers'), cantatas, and simple pleasure.
I spent months trying every avenue to gain financing to buy out my brother's half interest in the house, to no avail. I didn't have bad credit, I just had no credit.
Never had a credit card, because I always worked under the premise that you saved up for what you wanted, then bought it. My house had been foreclosed upon a few years prior, when I was first diagnosed, because I had been so sick that I missed a ton of work, and eventually had to take time without pay.
I went downhill quickly, and by March, I was a basket case, physically, and mentally. I had to go out of work on short term disability because my brain just simply wouldn't function. For a short time I even had to cease driving, because I was unable to remember how to get someplace, and get back home again, without getting lost.
Every couple of weeks or so, I would have conversations with brother about inspectors, appraisers, workmen, having household things transferred to my name, my search for financing, until one day in particular, when I had a cataclysmic phone conversation with him that completed my crumble.
When trying to convey details of a possible deal to further my acquisition of the house, he blew up at me. He was screaming into the phone(while at work,mind you) that he had tried to find this company on the internet, and they "didn't exist" according to him. He then accused me of trying to scam him, which confounded me, but hurt me deeply. I began to cry, and that apparently stoked his rage, because he then accused me of trying to use AIDS to garner sympathy. He screamed that I was a liar, a scam artist, and he would no longer tolerate any of my bullshit.
I hung up. Then I lost it.
We had few conversations after that. It took almost a year for the affairs to make it through probate court. The house was sold at the courthouse for a pittance, In the beginning of 2004 I was summarily "helped" to clean out the house and was able to put a very small amount of things in storage, as the house I was "helped" into, was almost the size of a large efficiency, where I remained for one year, before being saved at the last possible moment by my newly found ASO, who facilitated a miracle spot on HOPWA section8 housing. HOPWA allowed me the opportunity to move into the house I now live in. It is modest, but just fine for me and the weasel.
It is also quite old, built in 1912. The hardwood floors are lovely, but profoundly cold in the winter, as there is a wide open crawlspace/dug-out basement that houses the fuel oil tank, furnace, and a shelf that appears to have been a workbench at some point in the past. There is no insulation, and the wind can be felt around the window casings in all of the rooms above.
A dear friend brought me a room size rug that covers the majority of the livingroom floor a couple of months ago. But for this rug, I would never venture into the living room.
I invested in a cheap electric blanket to use on the loveseat, for television watching, and an old electric stadium blanket to wrap around me when sitting in this chilly drafty dining room. I also found the coolest little doo-dad at one of the business discount stores. It is a heated foot warmer. I can put my feet on the doodad, wrap the stadium thingy around me, and spend sometimes hours here at the computer, where I can reach out, and have time with all of the friends, and acquaintences I have met via this site.

I have lived in this house for almost a year and a half now. I have been awaiting a hearing before an administrative law judge for the duration of this occupancy. knowing that I could no longer stand more that two, or three hours on my feet at a time, I know I cannot do anything even remotely like my old job, and the government has even stated that they believe this to be true, as documented in the denial letters they have sent me.
Of course, they believe I can still do something.
In the course of one day, when faced with a doctor appointment, and grocery shopping, I am in need of a lay-down, after accomplishing both. Suffice it to say, that I may not be superwoman, but I get by as best I can. With the beyond brainfog mental abilities, it is inexplicable the nuances I am able to still be cognitive of.

It has taken me weeks, if not months, to compile these thoughts, and I hope that I have been able to elucidate the problems inherent in being a significantly disabled person with a good IQ, but augmented with dementia components. I cannot possibly relay the amount of frustration this entails.
When I have days like this, that I am able to type for a while, and keep my thoughts in a progressive, discernable flow, I try to sieze the moment.

Now to address the title of this blog.
Where in the world does my ability to pick these thoughts that are ever present out, and try to force myself to give them a voice, I do not know. It takes serious amounts of focus power to not go off into into multiple tangents, because I am so easily distracted. Something shiny, a news announcement, a kid dropping by, the arrival of the mailman,.....the combinations are endless.
I know I don't write as often as I would really like to, but every time I sit down, tap out what's on my mind, it always gets emptied upon the proofread. Apparently I am my own worst editor.

I have been awaiting an Administrative Law Judge hearing for Social Security Disability for over a year now.
I am thankful for having this home, and the ability to come to this place to be with the people who have come to mean so much to me.
I have formed an endless covenant with the people that populate this site.

There's more. I'll try again tomorow.
My resolution(secretly) has been to write it and own it.
Cheers, and Happy New Year.