All of the above was originally written in early December.
It is now April of 2008.
I have finally come to the realization that the real reason for my long absence was simply the cold hard truth of a portion of my disease process.
I kept naming off reasons to myself, which sort of worked for awhile.
Of course there was "the holidays", too busy, writers block....blah blah blah. Now in looking back over the period, I believe it was a combo of "winter blues" and mostly a whopping dose of apathy.
Not only did it affect my online life, but all aspects of my everyday life.

Anyone who knows me, pretty much knows that I'm rather a pragmatist in my approach to life. So I accepted the fact that dementia is quite real. I had done a fair amount of reading and research, in the off chance that it sneaks up on me, I can have a plan in place.
I clearly underestimated the seriousness, and the ramifications of the havoc it can produce.
I lost all interest in almost every aspect of daily life. I neglected my personal hygiene, let the house go to hell. Hell, even the spindly little ivy plant that came out of one of the arrangements for my mother's funeral, finally died of inattention.I had managed to somehow keep it alive for ten or eleven years(she passed in '96'),only to suddenly notice it's obvious death.

When it is happening to you, you lose the ability to look objectively at what may be at the core of the problem.
My friend actually had to nag me to shower,even going so far as to clean the house one day while I was away doing some errands. I'm quite sure he thought it was sheer laziness on my part, but I couldn't see the forest for the trees.

Spring has finally brought me around again. The sunshine has worked a small miracle for me. While I only have the attention span of a gnat, it seems that I am more alert.

There has been one other little miracle(disguised as a blessing)that has come into my life.
Those who know me, know that I am the critter lady.
Last spring it came in the form of a 4 week old baby squirrel named Tyke.
Well three or four months ago, I got a call from my daughter. Her neighbor was in a bind, as she was caring for her own elderly mother in a rehab facility, and her mother's bird. Did I want a bird?
Don't need to ask me twice.
While I have been tending Sweetie's progress through her battle with cancer, she has been kind of stable for a while now.
That very night I went to meet, and bring home my new friend. Her name is Lovey( no, I didn't name her) Dovey. She is a beautiful white dove. I went straight into research mode to learn what care, food, behaviours, and idiosyncrasies I needed to know.

It was love at first sight. They are commonly called "laughing doves" as they make a unique giggling sound whenever they land somewhere. She always has a nice conversation with me. She is on me or with me all day. She loves to nestle in my hand to nap. She cleans my eyelashes, and eyebrows, and just generally makes sure my feathers are all in order. She came with a huge cage, but she only hangs around in it at night, and to bless us with babies. The perches she had were soft plastic and very digfficult for her to grip, so we( yes I mean we) went to get her some appropriate equipment. She lovesto go bye-bye with me in the car. She perches on my shoulder, and while we're going up the street she has her wing straight up in the air. It is a display to all of the other birds that this is her territory. While we were there, I picked up a removable nest. She has blessed me with about a dozen babies thus far. She apparently doesn't know that they will not hatch. She believes I am her partner, and she coos the 'come to bed' coo when she is trying to sit on the eggs.
If I leave the room for a bit, she panics and does the 'oh my God where are you..I can't see you' coo.
At night while she is in her cage, she will coo for me if she hears me laugh at a program.
She does the whole submission and wing flapping thing
to appeal to me. She also has an entire vocabulary of coos that I have been slowly figuring out.

Long story short, she has made a tremendous difference in my life. Every time she comes to land on me, I cannot resist the giggle she does. She sounds kind of like a cross between a chicken and a turkey.
I defy anyone to resist giggling when she starts.
She has helped me to not be so morbidly focused on Sweetie's lingering death process. Lovey has become used to Sweetie, and has even allowed her to get close enough for a sniff a couple of times. Sweetie is too ill to care about trying to prey on Lovey.

So now we are three, the weasel, the bird, and me.
I'll be around more.

I have rather been insidiously declining over the course of several years, only with a more notable momentum in the last few months. After years of complaining about my symptoms, the nice little neurology boy (I swear he looks like he’s twelve), finally threw me a bone, and apprised me of the fact that he had at last concluded that I have “HIV Dementia”

The story has since taken a twist to its plot. A couple or so months ago, I decided to do a smidgen of research, aside from what I had been able to glean from our site.
Complete streams of thought go poof, I lose words mid-sentence, and couldn’t tell you what I did yesterday much less this morning. It is incredibly frightening, because I still have access to my intelligence, and realize that this is so not going anywhere soon. The new thing that has been happening infrequently, is inability to swallow sometimes. I have to stop completely, take a breath, and concentrate really hard in order for it to happen. Just an interesting tidbit for your edification.

I always had it in my mind that some of the articles I’ve read over time have intimated that things can be all cool again, ‘cause we have these drugs that cross the blood brain barrier. Neato….. …… so all I have to do is be faithful with my drug regimen, and things will be peachy. Unfortunately the damage was done way before I was changed to the current regimen that contains AZT. Just yesterday I saw an article on our daily news thingy, that says not only does the virus directly impact the neurons, it also keeps your body from utilizing the available auto-stem cells for reparation.

Bottom line is, it is doubtful that I will ever regain the aspects of my brain/personality that have been lost. My spontaneity has all but left me, my sense of humour is significantly stunted.
Talk about a joy-kill!
But worse than that, is the knowledge that I know it is happening, and I can’t really do anything about it. I really miss me. Very much.

There is some literature that purports using Ritalin is sometimes useful, but I cannot gain access to it to find out. Even if I could get boy-wonder to prescribe it, I couldn’t afford it. Hell, I can’t afford anything at this moment in time.

Wish I owned stock in the Post-it company, as I leave little love notes to myself in some pretty strange places. Despite the notes, I still can’t figure out why I felt it necessary to write it in the first place.

I am really afraid of my up-coming adventure to San Francisco, but am quite pleased to have my friend Jerry to hold my hand. I am actually fearful of becoming lost in the airports. There is also mounting concern about my ability to remember the names of the newer faces I am going to kiss, and romp with.

I will proffer this example; I pulled up the forums yesterday and did some reading. I found one thread that piqued my interest, and before I could pull up the reply screen the whole thought was completely gone. I cancelled the window, and took another five minutes to even find the thread again.

This is some scary shit.

When I become a doddering idiot will I even know the difference? Deep huh?

Today is a complete bust. A total aids day. Nothing specifically wrong, just kinda feel crappy all around. Walking around the house in circles. Not knowing what it was that I was going to do in this room when I get there. So I go back to the room I started in, just to see if the idea will come back.

I think my success rate ranks in the low end of forty percent of the time, but I can’t remember for sure. Just another aids day.

The cool part is, that tomorrow I won’t remember it.

I have finally reached the lowest point of my existence. The apathy that accompanies stage 2 of Aids Dementia Complex is now quite pervasive. This is definately not depression, although the early stages are often confused with depression, and so I happily trod that road because of a long history of depression. This is different. My mood, and affect are completely within normal limits, but I just don't give a shit about anything.

My house is about to get up, and walk away, having dustbunnies bigger than Sweetie. She seems to navigate around them as any experienced slalom skier. I just wade through as though they were non-existent. I just don't care.
My personal hygiene has become an abomination. There is a mountain of laundry piled into the corner of my room that will soon rival my height. Wheeeeeeee who gives a shit?

No sirree bobbie! I am not depressed, I am pissed. I am mad as hell. I have been mad as hell for a couple of months now. Independant of the situation with my son that has compounded the problem.
You see, around the beginning of the year, I began a research project. I began reading articles, abstracts, and publications that addressed ADC. The more I read, the more angry I became.

I discovered that at the time of my departure from work, the very FMLA form that was submitted on myt behalf, contained the very criterium described for ADC stage1, and I soon realized that I have progressed to stage 2, whilst in the midst of being labeled depressed. Yes, there is a depression co-factor, I won't deny that, but the two are quite distinct.
Inability to concentrate, check. Loss of train of thought, check. Insomnia, check. I cannot tell you how many times I have participated in "brain fog" threads. Even going so far, as to attempt some conservative OTC remedies to see if i could gain relief. All for naught.
You see, I learned that the truth was, the damage was done way before I ever embarked on HAART. Despite the fact that I am on a drug or two that crosses the "blood brain barrier", it's too late. The damage is already done. The damage done was too far advanced, before I ever even started meds. The literature seems a bit encouraging, as it is often touted that because of the drugs that are known to cross that barrier, hope is ascribed to the fact that the viral effects can be held at bay. While I am still able to distinguish between the two, I am incredibly angry at the fact that if found early enough(or believed early enough) I may not be in the predicament I am.
Who knows? Who knew?

For a brief period of time, I was given a beautiful gift of love and caring. A tiny furry being who thrived with the love I could provide. It empowered me greatly, and helped me rejoin the human race, however briefly. This tiny squirrel who had been abandoned by his mother, as she would not risk two huge barking pitbulls to rescue her baby. His eyes were barely open, and he could not hold his own head up. I read, and researched. I learned how to guage his age, state of debvelopment, and physical/emotional needs.
He gave me hope to engage in the world at large again.

I have been a ferret mommy for quite some time now.
Sweetie developed a pancreatic tumor, that while common in ferrets, I had never experienced before. I read extensively about insulinomas, and found that, even with surgery, she would experience a recurrence, and I could never inflict that upon her. Her tumor was not palpable(could not feel it yet), and the appropriate treatment was to give her tiny doses of Prednisone, that would elevate her blood sugars sufficiently to keep her from experiencing the hideous "spells" that were the hallmarks of her disease onset. With the knowledge that she will inevitably succomb to this disease, I treat every day with her as a gift.

Every day with Tyke was a gift. Every day with Sweetie remains a gift. I am able to exist, and proscribe to an animal's perspective on this life. Today is today, and while I may hope for tomorrow, it is not a reality yet.

I would it were that I could think about tomorrow, and make plans. I wish I had forethought to anticipate the pitfalls ahead. I think I do on some days, but it is all forgotten before tomorrow gets here. Gosh, even the the whole ADC thing was an AHA moment. I have to keep going back to read it to remind myself.

I know. Long in the tooth. Lots of things being put forth. That is how my mind is working of late. I am having real difficulties living in both planes of existence. I gotta say so much more, but am verklemsch.......talk amongst yourselves

I noticed how easy it was to say that I was happy to give her a good quality of life for an open ended period of time.
Just like me.

With the simple addition of a medication, she will have so many more days to playfully wallow on my bedspread in the sunlight that comes through the window.
A time or two more, like she had day before yesterday.

I made a really good batch of homemade chicken & dumplings. She knows when it is cooking in the house, and is usually more visible, and playful.(cauz there's goodies cookin')

With the simple addition of medication, she has been back to marauding the house again. Banging the bath cabinet door around because it makes her feel really strong, and important.

She is doing her happy fuzzy booty dance again.
She is back on duty of being official bag/package inspector. She gave me a tiny face bath this afternoon.

I am absolutely convinced that she is jubilant to feel like herself again.

With the simple addition of medication.

I'd be a pretty happy critter if my meds could do all that.

While I am starting this on Valentine's Day, it may not appear until tomorrow, or even the next day.
Today has been an absolute rollercoaster ride of emotions. It all started out fairly well.
I called a few of the people I value to say Happy Valentine's Day, and then set out to acheive some mundane activities of daily living.
On this day for lovers, I have busied myself with tackling the mountain of laundry that I inevitably allow to accumulate for lengthy periods, and finally putting a little spit & shine on the kitchen.

I have been fostering Christy/Serenity's(my grand-daughter) dog since Christy's suicide three days after Thanksgiving. He is a magnificent dog, whose outward appearance is incongruent of his real personality. He is a pitbull terrier(with a quarter admixture of Dalmation). Despite the bad reputation this breed has been given, I imagine that most folks would be incredulous of the gentility of this dog. Even given the knowledge that the public at large embraced Gentle Ben, a story of a bear raised by humans in captivity, people still cannot see beyond the sensationalist stories of children, and adults being mauled by these animals.
Noah was bought by Christy for Easter two years ago, while he was a foundling. Her intentions at the time, were to have an animal companion for Serenity to grow up with. He absolutely adores Serenity, and dutifully endures fingers in his face, and half hearted attempts by her to try getting on his back, until I catch her, and scold her. He puts up with Barbie & Ken riding on his back on Safari, a baby doll, and Bratz kids riding him to the mall, yet with grace, and gentility.

When my son first brought him to me in November, he was wrought with anxiety, and had taken up the habit of biting, and chewing his backside, and rump to the extent that his entire backside and upper tail were covered with bleeding scabs from his neurotic behaviour. He had been hit by a car while he was still just a young puppy, and his leg was badly broken from this singular experience. By grace, the Humane Society offered to help this dog get the surgery he needed to fix his leg, but the caveat was, that he would be neutered. Apparently the surgery was performed on his leg, and why the veterinarian didn't perform the neuter at the time can only be speculated.

He went for his surgery, clipping, and vaccinations yesterday.
He is a lovely soul, but I am really conflicted by the reality that I am physically, and mentally not prepared for the commitment of keeping him in my home.

Please allow me to backtrack.

The day of Christy's funeral, my son and Serenity came back to my house for a few minutes before we made the trip to Mount Airy, where the graveside would be held. While we were here, Sweetie awoke, and came out to mingle. She finally lay splay legged on the dining room floor, drooling copiously, and appeared to be 'out of it'.
I was understandibly alarmed, but knew we needed to be off to the graveside.

I have done exceptional amounts of research surrounding the maladies of ferrets down through the years I have had them as family members. I have been very careful to stay away from a large commercial enterprise that supplies them to pet stores, because of the inherent disease states that often follow these animals. I patronage a local ferretry who raises these animals as pets, and they are socialized. The ferrets are of clean stock, that is free of the whole disease tainted animals from the aforementioned commercial enterprise.

The real facts are, that there are common maladies that plague ferrets, and it is a crapshoot with every animal that you encounter, which impresses the spectre of finding an animal of good stock.
I have a friend whose beloved ferret died of one of these common afflictions. Knowing that it may be part of the equation does nothing to soften the blow when this loving tiny creature succumbs to the ravages of this disease.

I will describe the two most common of these diseases, but I will firstly address the commonality of one diseae in particular. We already recognize feline leukemia, which is the HIV of the cat world, but there is another similar process that has been identified in ferrets. It is the disease known as Aleutians disease. It is similar to feline leukemia, and is also a distant cousin of what we commonly know as HIV in humans.(just as feline leukemia is the HIV of the cat world.)

Running for second place in ferrets, are two common diseases. Adrenal gland tumors, and Insulinomas. Sweetie was exhibiting the hallmark signs, and symptoms of an insulinoma, but I am unable to afford veterinary care. The research I have done, recognizes that a ferret with an insulinoma is most like a human with Type II Diabetes. I have been treating her with high protein meals twice a day( as protein keeps the individual from suffering wild swings in blood sugar), and that has kept her in relative good shape.
I knew this would be no long term plan, but only sufficient to keep her stabilized until I could afford to secure veterinary assistance.

Here is where my existence dovetails with reality.

I have been existing on little to nothing for over three years, while being refused by our Federal government to recognize my inability to work. I have exhausted a meager inheritance, all of my life savings, and nearly my entire retirement fund as of this date.
I live in HOPWA funded section8 housing, and recieve a 72$ monthly stipend from the Housing Authority for energy assistance. I am able to eat with 152$ worth of food stamps each month. I have shamed, guilted, and cajoled my children to repay the huge expenditures I have made on their behalf when I was flush, and able to afford it.
Now, I'm living with sweaty palms every day.

I remain eternally grateful to the Humane Society for 1. helping me get Noah to the vet to be neutered yesterday(along with a seriously needed nail clipping, and all of his vaccinations.*) 2. helping me have the opportunity to get Sweetie to the vet for confirmation of my suspicions, and the opportunity to give her a good life quality for an newly extended period of time, with a minimal addition of a simple medication.(Prednisone, which raises the blood sugar ever so slightly so she can have a resurgance of her old playful self again)

* My tiny house is almost entirely old( and I mean really old) hardwood floors, except for tile (again, really old) in the bath, and kitchen. The wood floors have been badly gouged by his nails, and I am truly fearful of the consequences upon my leave of this residence.

Such is my life.
If you really want some excitement, I could regail you with the mind boggling stories of my my childrens' adventures, but I get carpal tunnel pains in advance of considering the typewritten event.

It seems that life keeps getting in the way of my train of thought.

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

I have watched from afar, while you have struggled to keep some sense of sanity in your life since losing Christy. I understand the incredible pain, and lonliness, and the hole in your soul that will never be the same again. No one will ever come close to being as important as she is, and was, again.

For the duration of the visitation, funeral, and the immediate period following, you hid behind a mask, to keep a brave face for Serenity, and everyone else. I saw the pain, knowing that there was nothing I, or anyone else could do to ease your burden. It may be years, or never, that you are able to have those feelings with another person. I wish that the platitudes we speak could be more true than they are. Time may ease the seemingly insurmountable pain, but it is a measure for only you to come to terms with.

I know you spoke of having anger, and that is perfectly understandable, but I am more concerned with how you have gone on a destructive tangent to keep from having to feel the emotions that threaten your mind with every turn. You are trying to dull the pain with every fiber that is in you. Unfortunately you will destroy yourself, and any chance your daughter will ever have, because no amount of drugs, alcohol, sex, or pretending will work. I know you are having difficulty dealing with Serenity, because every time you look at her, you see a perfect, tiny incarnate of Christy. You tell yourself that you need to go 'out' and show the world you are 'living', but you know that that is a lie. You may not even realize what you are doing consciously.
Our mind does that for us, when the emotions are too painful.

I understand the 'what ifs'. What if your phone hadn't been dead that night. What if she had never had posession of that weapon. What if we had all pushed harder for her to answer to the authorities. Perhaps she would have been in a forced rehab if she had been jailed, rather than being given only slap on the wrist, after slap.

It is OK to forgive yourself. You could not change the particular events of that fateful morning. It was not in your hands. I really do understand the tiny amount of guilt you will probably always carry in your heart, because I have done so myself. I still do, and you probably will as well.
The cataclysm of events that brought her death will likely always haunt you to some degree, and I won't try to tell you otherwise.

I also understand that the events, holidays, and the fact of Serenity’s impending birthday, as well as Christy's just a few days later is still coming soon, and are going to be so very difficult for you.

I want you to know that I love you, and support you, and I always will. Whatever I can do, you can count on me.

There is a reason I chose to write this to you, as I feared that my own emotion would get in the way of your being able to hear me out before shutting me down. Your desire to avoid these feelings, whether conscious or not, would get in the way of hearing the whole message.
While I know that your heart is still very raw, I want you to know how really worried I am for you. In the spirit of love that I write this, I am really in fear for your very life.

Your life would be truly over if your actions brought about the death, or irreversible damage to the only one in your life who matters to you, Serenity.
Would you doom her to the unsafe circumstances that catapulted Christy to her psychology? To the demons that wracked her soul, even before you entered her life for the better? Would you condemn her to that existence? Do you want Rennie to have to call the ambulance over, and over again, because you had too much something or other? Do you want her to fear her only parent's death because she couldn't wake you after too much drugs or alcohol?
Do you want to be homeless with a precious little girl who only wants to be with her dad, because you are unable to hold a job because of your own irresponsible behaviour?

Are you not the same man who told me that you would never entertain any idea of having another child with anyone other than Christy?

Serenity deserves to have a dad who is a hero in her eyes. My own father was not a fancy man. He was allowed to attend school up to the eighth grade before he had to be given over to an orphanage. Romeo, his father, died at an early age, and my grandmother was left alone in the Depression years with eight boys, (of whom my father was the youngest) and a girl (Aunt Mary) who was the youngest child. Your great grandmother could not support all of the children, and the boys were all sent to foster homes (such as they were), and she only kept Mary.
He was a man who lived right, and did right by other folks. He expected fair wages for the work he did, but never expected perks. At the age I am now, I cannot relay to you the importance of being a fair minded man, who is a man of his word, as well as a man who would never consider taking anything that was not fairly due him.

The older I got, the smarter he became.

If your daughter loves you and respects you half as much as I loved my own dad when she is twenty five, then you know you have lived an exemplary life, regardless of monetary wealth, things, or fame.
It is not having cool things, but being a right and responsible human being that will resound with your daughter forever.

When I was in my pre-teen years, I wanted all the cool things that the other kids were wearing, and nifty belongings. My parents were more than able to afford those things, but chose to instill an earned ethic in me. I was fortunate to grasp at an early age, that it is not things that make you a man. It is the giving of your true self, and the humility that allows you to have an open mind and heart, that establishes your character as a man. I hope with all that I am, that you realize this before there are catastrophic repercussions.

This will be the most sensitive aspect of your life that I am about to address.

I am of the sincere belief that you have confused your grief emotions, with romantic emotions. I also am of the belief that you have only recently begun to maybe feel that way too, but you are now entrenched in something that is weighing on your mind.
Please read on, and I will try to not offend your sensibilities.

We have all been profoundly touched by the loss of Christy. She had not even finished living her twenty-first year. She rose above the abysmal pathology she had been dealt, and had made great strides to better her life. We were never so proud, as to watch her stride across the stage at Wake Forest to accept her degree. I was so proud of her for working towards a nursing degree. She was going to make it out. Out of the legacy of her familial psychology.
It is unfortunate that her siblings have not been able to do the same.
Because you have been so recognized as a saviour by nearly all of the family, it also made you the focus of all things that could be right.
In being universally recognized in this manner, you have become also the poignant recipient of even her own siblings' admiration. They too, have mistaken emotions of closeness, for feelings of unhealthy closeness, that has manifested in a sexual way.

While I understand these dynamics, I also feel compelled to help you understand why this is the most destructive thing for Serenity to witness. It will only serve to perpetuate an unhealthy atmosphere.

Please allow me to illustrate in a personal way you can recognize.
Do you remember aunt June? Out of four sisters, she was/is the last remaining sister of my mom. Do you remember the day at grandma, and grampa's house when aunt June flew into town because we all knew grandmother was near death? We gathered together to remember, and garner strength in the hours of grandmother's death.
When the funeral home men came and took Shirley to the funeral home, could you have possibly have imagined Aunt June having sex with grandfather? While he loved Junie, she was not Shirley (mom), and she never could be. He respected and recognised that.
I pass no judgment on you, because I know too well the uncharted territory of grief, but I cannot continue to stand by in horror as your daughter is exposed to an abhorrent existence. I really believe you are not/have not, done anything in a purposeful deleterious desire, but have become mired into an existence not of your conscious choosing.

I beg of you, please take stock of what you are doing. You are being watched closely by Serenity, because she has no other parent than you.
I know it is hard. I know you are young. I know you are hurt and confused, but as hard as it is, please think of the little woman you are going to most influence.

I love you to the ends of the earth. It took me until the end of my third decade to come to these sobering truths, and I hope that you could only recognize them before the time it took me, because it really is of utmost importance.

If you were to die tomorrow, what would you want your daughter to absolutely know about you?

Tomorrow is not promised to any of us.
I love you.

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.

I have missed both of my prior appointments with Rachel, even though the last one, I had the date completely right, and had recorded it on all of the calendars, yet failed to make sure of the correct time. As luck would (or wouldn’t) have it, I was completely certain that the appt. time was for 1:40, but alas, it was really for 10:40, and at the appointed time I went to the calendar to make sure of the minutes, only to find that I had already missed it by hours. It only takes me fifteen minutes to leave the house, and be at the check-in window……… Well whoopsie, I’ve done it again.

At this juncture, it has been a smidgen over five months since I last saw her. Not good. Especially since I have so many things I need to talk with her about. Please remind me about the eyes, and my impending visit with the Ophthalmologist for the exploration of why my eyes had an increased IOP….*intra-ocular-presure*
……by the way…….felt by I had just been queried by something a tad shy of Ocular Mother, or her possible fair minded minion…….
During the interim since my last visit, I have seen the neurologist she set me up with twice. He wants me to have another neuropsych work-up like I had in ‘03, repeated. Alas, that was when I still had insurance. Now that I am indigent, they will not see me.
He has done a really super job of completing neuro/cranial checks, within the confines of our visits, and after my last appointment with him, (after he excused himself to confer with an attending) he ventured the hypothesis of HIV dementia (somewhere along a timeline). Well duh! I’ve known that for some time now. Big surprise. The truly unfortunate part of the equation, is that it can neither be proved, nor disproved while the patient is alive. This is something that can only be confirmed by autopsy, which will never happen because I’m guessing that many AIDS related deaths are attributed to either the disease entity itself, or stemming from same.

I live in a rather strange circumstance. The only thing reminiscent of my former life, is getting up in the morning, and making my coffee to toss my pills down, and set about my daily activities.
That is where the semblance stops. My brain is too fragmented to form a daily plan, or schedule.

The simple truth is, that in my more lucid moments, I fully recognize that I have lost tens of points on the IQ scale. Hell, I was the girl who only needed to study the schematic of a piece of equipment, in order to repair, or maintain any given piece of medical testing equipment in our clinic. I created, and maintained a clinical database of all of our patients’ testing, and from which groundbreaking paradigm shifts were formulated. I was accomplished, and published.
Should I mention here the acute diagnosis of severe, bilateral, carpal tunnel syndrome, for which I received the ability to have the right one done.
In contrast, I have yet to still fully understand, and utilize all of the faculties of the little bitty mini-video/cam (made for teenagers), purchased for use in Montreal. ( i really thought i wanted one of those cool lime green colored ones,but none were to be had, ...hence the smart little royal blue.)
Nearly a year ago, I was given a romper room version of how to publish pictures in my blog by Bailey, whom I know, had to have laboured for a significant time to help me, as I was initiated to the world of blogging.
I will admit here, that I simply cannot put those printed-off instructions into use. My mind cannot wrap itself around each of the intricate macros to bring it to fruition.
I still feel a sense of pleasure that I have learned how to write my blogs with my Word program, and be able to cut, and paste them on to the blog page.

The thing most troubling to me is the fact that in the original neuro/psych evaluation, I learned that I had a supposed genius IQ. How completely ironic that I would be given this neat title at the pinnacle of my decline.

I find it difficult to complete my thought processes here on these pages, as I know that it comes off rather halting, and disjointed. I see so many people reaching out to post a tentative thought. While I would glory in the opportunity to converse with so many people, I am lacking the physical stamina of my hands, and wrists, to say all of the things I think in my head..
I am embarrassed by the fact that at one time I would have been an able author, but now find myself having to stop frequently because the thought process I was trying to convey, simply leaves my head.

There was a forum member here, who was controversial at times. He wrote in long prose, that some found too bizarre to follow. He inserted himself into other peoples threads, and wrote in tangents. Some found him annoying, but I found him worthy of an open ear, and a willing heart. He was reaching out in a profound statement every time he responded in kind to another.
I do not know what happened to him, but we have not seen him for quite some time now. I can only hope that his toils here have been mercifully relieved.
I've frankly been making forays into a parallel experience of the comingly infreqeunt daydreams of a frightend future ensconced.
My point here, is that I can only now wonder if there will come a day, when my own mind will take such a tragic turn. Will I still be someone worth taking time for? Will I still be the person that my friends have come to understand, and love regardless?

I used to have a marvelous wit. I was raised by people who possessed an innate gift of empathy, and a healthy sense of common human comedy.
I know that I have lost significant ability to be occasionally spontaneous. It has also recently come to the fore, my diminishing abilities to think even of other things, just on the other side of that door.

I ‘ll just give you a glimpse of my tiny world here on S. street.
Next time here, ….
………… a microcosm of a masked obsessive compulsive.

BUT, I anxiously await each day for my little furry friend to awaken, and seek me out. That is when I am most happy.

I carefully examined every face that made exit from the terminal. As I stood there, I was instantly excited beyond words to see Dan, and Jonathan walking towards me. Their faces were a long awaited gift for me. I’m sure my face instantaneously combusted with grins, and happiness, as did theirs. We hugged, and kissed, and went outside to talk for a bit. We found a spot to sit, and recoup from the hours of weary travel, and exchanged travel bitching. I knew that Dan had been in one airport or another for over twenty four hours, as he had called me from Nashville airport the night before. I knew Jonathan had to be fairly bushed as well.
This was the moment I had been waiting for. The three of us had a bit of chat, and I left the fellas to go back in to the terminal, as we were next expecting Jody to come through at any moment. I waited patiently while sporadic travelers rounded the corner, and came into view. No Jody. Went back outside to get another glimpse of my friends, and then zip right back into the terminal again. Bless his heart, he was the absolute, last straggler. I had just made my second trip back to the sidewalk, to report that I had not yet seen him. We decided to at least begin to scope out the transportation situation, and as we all heaved ourselves up with our luggage, I turned around and voila’, I spied the dear man I had come to love so much in Nashville. We then went through ‘the greeting scene’ again, and began an earnest search for transpo.

We needed something large enough to not only hold all four of us, but, the large amount of luggage too. Wouldn’t ya just know it, but one of the black Crown Vics I had seen whizzing by me all morning, glided into place, and we were off. We were all extremely grateful for the first comfortable seat any of us had had that day. The windows were tinted, and I felt like a rock star when we pulled up in front of the hotel. Jody was given the front seat for his long legs, and he was more readily visible to the greeting crew, but boy, oh boy, did the fun begin when the rear doors opened.
I cannot recall being so excited about anything in my entire adult life at that moment, aside from the births of my grandchildren. I wept, I kissed, I hugged, I loved, and felt more alive than I had at any time my memory could conjure. I was actually in the company of all of the people I had come to know and love for so long. It was truly an electrifying time. At this point, adrenaline took over, and apparently fueled me for the remainder of my trip.
This scene played out many more times over the course of the afternoon, and into the evening, as the group grew in numbers. Dear (and I use that word loosely) Rocky, guided me to the desk, to assist me with getting settled, and as I made it to my hotel room, I was so very thankful for a comfortable seat, and air-conditioning.

We each had a packet that had been prepared for us, that included an elegant welcome to our group, by the Mayor of Montreal, restaurant, and sightseeing guides, along with nightlife guides. Each person received a lapel pin of a Canadian Maple leaf, a piece of Maple candy, a red wrist bracelet with the AMG06 logo in relief, a couple of condoms, and a cute little bubble of lube.
If only it were, that I could have made use of those last two gifts.

The group met up again in the lobby at precisely seven thirty (thanks again to whomever hired, or nominated, the pit bull/Chihuahua coordinator, as his tenacity was ferocious) to head out for our first stroll together as a whole, to rape and pillage the village. We were an admittedly formidable group. You could almost palpate the fear that descended over the staff at the various eating, and drinking establishments we patronized. You are familiar with the term “deer in the headlights” look, right?
We were a noisy bunch. Boisterous, and excited beyond any of our hopes. It seemed that we really filled a place, and our mutual love was that of a large family reunion.

The morning of our journey to the chapel of hope was quite truly unique. Forty some odd people, all with the same black AMG tee shirts, red HIV/AIDS ribbons pinned prominently to the fronts, walking en masse’. Along the way, some of the townspeople would ask us what this was all about, and we would proudly proclaim our AIDSMEDS affiliation.

The single most profound moment of my entire experience, was the candle service we shared at the Chapel of Hope. I would like to take this moment to extend my deepest appreciation, and praise for Jan, and Alan, for the well thought out, and truly beautiful service. I began weeping as I read the prayer, and instinctively knew it had to have been penned by Alan. I sought him out, and had to give him a heartfelt kiss for his lovely words. My soul was almost overcome with emotion, as I had quietly voiced to Joe and Stephen, the night before, that I hoped we could have a moment to remember James, who passed from our midst, just last year. Little did I know that he was the subject of our remembrance. There are no words sufficient to describe how my heart transcended to an unknown height, and the endless fountain of tears, both sad, and happy, grateful to be a part of this wondrous moment. The chapel was beyond description, and I am most thankful to the priest, and his partner, that allowed us to hold our service in this consecrated place.
We are all indebted to them for also allowing a plaque to be placed in perpetuity, of our journey there.

We all were so very touched by the wedding vows taken by Ric, and Thom. I could not have asked for a more lovely service. It is uplifting to the soul to witness true love to be bound together for all time. Both of them were still quivering, even hours after the ceremony was done.

We gathered, we shared, we loved, we laughed, we danced, in the face of this despicable disease.

I have been alone here in my little house for so long. I can’t even remember the last time I had this much excitement in my life.
Every face is etched in my memory. Every embrace. Every kiss. Every giggle. Every guffaw/snort. Every conversation. These, I will take to the grave with me.

But in the meantime, I’m hoping for another opportunity. My life has truly been impacted by all of my beloved extended family here at AM.

Yesterday evening, my next door neighbor came by to ‘check’ on me, as she had not seen me out in several days. Bless her heart. We have formed a nice little budding friendship since the weather broke a few months ago. She and I, sit in the only two houses on this side of the street. On the other side of her house is a small open lot, and then an apartment complex., and I live at the end of the street.

As you all know, I am open about my HIV, and she has shared a funny story with me about “that old man”(as she refers to him) stumbled into her bedroom one night while she was renting a room to him, and layed down on her bed, saying “ wanna fuck?”. She nicely reached under the bed, and pulled up the crowbar she keeps under her bed, and replied that he better get his nasty ass out of her room, or he would be sorry. Needless to say, that he shortly wore out his welcome in her house, and as I type this, his things are in boxes sitting on her front porch, awaiting his release from jail.

Ms G. is a diminutive woman in her late 60’s, and she has only recently stopped working. I used to look out for her house when she was working, but never had had a real conversation with her, until a couple of months ago, when I realized she hadn’t been around for a few days, but realized that her kin had been to her house at odd hours. We actually struck up conversation when Sweetie was lost . Her daughter, and grandson were just pulling up in front of her house, and I approached her gson about the fact that it might be possible that Sweetie had taken refuge under her porch. Her daughter shared with me that Ms G was in the hospital, and would be home in a few days. She did make it home, and has ceased work, as her healing process was a little longer than she had anticipated.

Since then, we have had many conversations, and a couple of evenings spent on the porch in my rocking chairs. We have shared much about our families, kids, and lives, including my HIV status.
She came to the door yesterday to see if I was OK, as she hadn’t seen me in a few days, and was concerned.
I invited her in, and we talked for a bit. I have noticed that her daughter has been using her car a bit this weekend, and she went on to tell me that her car was broke down in the parking lot of a K-Mart store up the road. She was relaying the story of how this man (who has been wooing her of late) came to her house, and took her up to the shopping lot to see her car. She was pissed, that this guy drives her up to the parking lot, pulls up next to her car and parks, but made no attempt to get out of the car, or try to see what the problem was. He essentially took her for a visit.

I’m no master mechanic, but I do have enough automotive knowledge to be dangerous. I told her I had triple A, and would she like to go check out the car. So off we go.
We get to the K-Mart lot, get her hood up, and she tries to start the car. It turns over, but wont completely start. She tells me that she just had a fuel pump replaced, and it was still under warranty.
I call AAA, and they assure me that a truck would arrive within the hour. The truck arrived beyond that hour, but Ms G. and I had a nice little visit while we were waiting.

During our conversation, she elaborated on the story of “Mr. wanna fuck”, and how he had been a drinker, and had some drug dealings too. She had slept with him at some point, and she went on to tell me, that she went to her doctor and asked to be tested for HIV and STD’s, as she had heard that he had been “catting around”. I must say I was mighty impressed with her knowledge, and her constitution. Her test came back negative, and she was relieved.

Anyhoo, the tow driver hooks her car up, and follows us back to our respective homes. As we pulled u[ in fromt of my house, I pulled a bit further forward, to allow room for the tow truck, and her vehicle to be as nearly parked in front of her house as possible. She and I get out of the car, and watch Mr. Tow park his truck. As I walked around the rear of my car I saw the truck rolling forward, and figured he was trying to get her car into the best position possible. But for the grace of god/dess, I would have been crushed because I almost didn’t move from behind my car. The truck rolled right into the back of my NEW CAR !!!! My little tires went screech, and my rear end was smushed. Ms. G. and I both had thought the same thing during the trip back to our houses……he didn’t look to be the sharpest pencil in the box, and we had actually had a giggle about it. I wasn’t giggling anymore. The owner of the station will repair my car, but I just couldn’t believe that this happened. My NEW FUCKING CAR ! ! ! AAAaaaaarrrrrgggggghhhhhh !
I’m heading out to the station in a couple of minutes to let the owner have a gander at Mr. Unsharp Pencil’s handiwork,. I thought it would be beneficial to write about the experience, but truthfully, I’m not feeling any better.. Oh well at least I wasn’t killed by the truck.

After processing the news dumped on me by dear Barney, I did the tuck-and-tackle maneuver for a significant period of time.
Actually, it was ten more years.
Let me explain.
I did a whole string of justifying, ignoring,denying, and purpose driven forgetting. This was 1986. I had just lost one job because of attendance problems. I was a single working mother with three five year olds. Unending problems with finding suitable babysitting services, and fallen from grace with my parents, because of their disapproval of my relationship choice.

I'll finish the earlier story with expediency.
After Barney was released from the hospital, I allowed him to come back home, while I digested the new information, and re-evaluated what this relationship had cost me.
When I tried to re-negotiate some ground rules, he became an all-out asswipe. Began taking my kids with him to meet his fuckbuddies, while I was at work. Drinking uncontrollably, and had my children along for the ride. When I found out what he was doing, I laid down THE LAW.
If he ever even thought about putting my kids in the car to go to a "friends" house to "socialize" again, his shit would hit the fan in short order.

He did. And it did.
I made an unexpected trip home for my lunch break, and found the house empty. I called work, told them I had an emergency and wouldn't be able to come back. Called my girlfriend Michelle to come over with her two adorable but protective, Dobermans. Called my father to come over with two new locksets, and tools. Called the police to come join the party. While dad was almost finished with the first lock, Barney came rolling up. The police hadn't arrived yet, but Michelle had. My father had a private word with him on the front lawn before he entered the house. The puppies watched him quietly put all of his belongings in garbage bags, while my father finished the other lock. The nice police arrived in time to reinforce the fact that he was no longer welcome at this property.

Two weeks later, I lost my job. I had never been so humiliated in my whole life. Being fired was just something that I found horribly embarrassing.
Fortunately, it is true that for every door that closes, another opens.

Within a week, I found the job that carried me for the next 18~ years.
I had issues that required my full attention, and HIV wasn't even on my radar screen. It was always there in some capacity. Again with the niggling.......
Having always been a pragmatist, I subscribe to the divide and conquer manner of attack. Or more simply put, compartmentalizing.

I renewed my relationship with my parents, who were instrumental in making phone calls, and helping me get the kids situated with starting school, and after school care through the local YMCA.
I launched myself into my new job with great relish. I had found my professional niche. I started working at the School of Medicine, in the Dept. of Gastroenterology. I had been specifically hired to perform the day-to-day clinical studies in the newly emerging world of H2 blockers.(The precursors to Proton pump inhibitors ie;Prilosec etc.) Zantac,Axid,Pepcid,and pro-motility agents, as well as several hot new concepts, that have now become recognized the world over. I was in hog heaven working for docs that were global leaders in their field. I became a GI specialty nurse, and even managed to get published.
About ten years in, I became hot property to my last boss, who is still a world player. So my last ten~ years were spent as an Otolaryngology specialist.

I am still unable to delineate whether I was truly in denial, or just too busy to address the possiblity of HIV. I never went to be tested. I knew that HIV was out there. I knew that it was still an evolving entity, and the research I had done led me to believe that it was more difficult to pass via hetero relations, so I rationalized that I had a probable 50/50 chance of not having contracted it. .........and besides, I felt just fine. I worked my ass off.
Toward the end, I was working fifty, to seventy hours a week. For the entire period of my employ in Otolaryngology, I was on-call Monday through Thursday, without ever having any relief. I was sending frightened patients from all over the world out overnight with a small testing catheter in their nose, and recording equipment that nobody else wanted to touch, or learn how to operate.(because they didn't want to be on call)

Sometime in '97', I began feeling kinda run down. Well who wouldn't. I then had three 15/16 year olds, who kept me in constant contact with the pulse of the principal's office, as well as most of our fine county sheriffs deputies, an incredibly demanding job, the loss of my mother the year before, after a tortuous battle with cancer, whom my father and I cared for at home until her death. Lisa was tired. Lisa also chalked it all up to stress.
I have no earthly idea how I kept it up, but I just kept plugging away.

In that same year, I fell behind in my mortgage, and car payments, from losing work due to illnesses, and kid related absenteeism. My car was repoed first. The nice man came to the front desk at work, and requested me by name. I thought it was a patient's family member, or a rep who wanted to shower me with freebies etc. We walked out to the parking deck, and he kindly allowed me to remove my personal belongings from the car before he carted it away, despite my pleas, and tears.

I spent another year or two floundering around trying to keep my head above water, but kept getting sick. .......over, and over again.
(How long does it take a polak to realize that something is wrong here?) My mind is a bit fuzzy about this period, but I eventually lost my house too. I believe it was latter '98', or early '99'. My house was foreclosed upon, and I wound up moving into the basement of my father's house.
Again, a door closed, and another opened. He was diabetic(typeII), and on an air concentrator(oxygen) because of Emphysema, and not doing a very good job of caring for himself. We looked out for each other.

Sometime in '99', I got really sick. I was inredibly fatigued, found out I had "walking pneumonia" from my then Family Practitioner, Amanda(whose husband had been one of my Fellowes when I was in GI). Beyond the pneumonia, I was unable to rebound. My lungs cleared, but I noticed a serious lack of energy. I was going home, and falling onto the couch in my uniform, and lab coat, only to awaken the next morning, to shower, change, and do it all over again. I kept making trips to Amanda, and we were unable to come up with concrete answers.
She finally asked me if I were willing to consider being tested for HIV. Damned if the little lightbulb came on over my head, and I had a moment of eureka! Of course, how silly that I never put it together. Duh!!!

We drew tons of blood, and made an appointment for a week. I had no fears of having a positive test. I'm not sure why. I returned the following week, and she revealed that the first round of testing looked positive, and we should now go another step further, and have labs sent off for the Western Blot. Needless to say, that the appointment three weeks later gave clear confirmation of my positive diagnosis. She then gave me the referral to see Kevin(my original ID doc).

Kevin,(mind you, I have walked the halls with, and worked with all of these people, so the first name stuff is not disrespect, as they were all colleagues) thankfully was the guy who was the community spokesperson/laison for the AIDS movement, and was doing really neat clinical work surrounding this disease. His Physician Assistant-C(for Certified) was, and is Rachel.(whom I see now, because I no longer have private health insurance) You only get to see the Faculty/Attending physicians when you have private health insurance.
He was kind, understanding, informative, and well spoken. I have always had a really good working relationship with my docs. It completely behooves me, when I hear the stories some of our fellow forum members tell of rude, disinterested, uninvolved doctors. They listen to me, and I listen to them, and we address all of my health issues in a cogent manner.They being far more cogent than I, as of late.

What has left me in the barely bearable circumstances I am currently in, was the fact that all of these people tippy toed around coming out and openly documenting how serious my health staus was, in an effort to protect me, as I was an employee of the same medical center, and this was way before HIPPA was in effect. Meaning, that any nibby nosed, or curious staff member could freely access my tests, labs, visit notes, etc.........
As a matter of fact, one did. That will be another story, for another time. Upon my first visit with Kevin, I learned that my viral load was quantified by the term millions, and my helper cells were nearly non-existent. These things meant little to me at the time, because despite the reading etc. I had done, I still didn't know enough to understand that I was in the throes of real honest-to-goodness AIDS. They were just numbers on a paper, and I felt really shitty.

It was a few months later, that I found this site, and got the best education regarding this disease I had found NO WHERE ELSE. Another Eureka moment came when I realized what those numbers on the page really meant, and that I needed to pay a little closer attention to what each lab draw revealed. Then I could make choices that would affect my health, and well being to promote the best outcomes I could.

I have tried to look upon my HIV/AIDS as just another part of my walk through this life. I have never allowed it to consume my thoughts, nor influence my actions. I did a fair amount of reading, and research when I was first diagnosed, in order to be as informed, and up to date on my information so that I could answer my kids questions factually, without stirring any fear.
Thankfully, I have always been very matter of fact in talking with my kids about sex, drugs, and rock-n-roll. They have always been free to ask me anything without fear of reproach, even before my diagnosis.

My son Brian, recently announced that he, and Alexis were pregnant. They had both been in relationships before that prompted them to go together and be tested. He just came to me a couple of months ago, and said they both had tested negative on STD, and HIV testing. That is probably the only thing I can say I'm proud of him for at this point in time.
My daughter Michelle, just went through a really bad period upon learning that her boyfriend,(box-of-hair) and father of their son Elijjah, has apparently fathered a child in the western portion of the state where he has family, and had frequented in the weeks just before, and after Elijjah was born. After she was through with her mental breakdown, I urged her on several occasions to go and be tested, because we already knew that he had passed HPV to her when they first began dating.
To my knowledge, she has not been tested. I would really hate to see her repeat the same mistake I made.

I have been personal witness to profound miracles of giving here.

Sometimes there are people who change medicine, yet have a month+ of something to share, because no public representative will allow them to be used for another person that may find themselves in dire need of these same meds.

If there is any one who wishes to discuss this serious matter, I am glad to have it on the table.

Any donations, or calls for need, will be responded to with expediant care.

Each of the people I have met in whatever capacity in this communtiy, has touched my life in an ongoing mosaic of this inspirational site.
I really like this puzzle.

I am stepping out of my closet tonight, and sounding a call to arms.
This could mean legal exposure, as I still a licensed nurse, though inactive for 3+ yrs.

Out of the closet, need meds.
(Have gun,Will travel)

If you have something to share, how good.
If you have a need,just say so.

My heart tonight. .......Lisa

I thought mybrain was functioning fairly well, and I will just have to beg your pardons for a moment.

Darn, this is messing with me.

Remember folks, just when you think you have it all together, you can lose it in a moment.

In my earlier blog about where my head was at, I tried to convey how mushy my brain was. I was having expressive speech problems, and my thoughts were halting, and probably hard to follow. I've gained a little headway since then, but far from my old self.

When I saw Rachel on March 7th, I was in a terrible state of mind. I couldn't tell whether my brain problems were a direct result of ground lost while on the STI, or from the re-introduction of my meds(Trizivir/Viramune), knowing the stuff that AZT is capable of is wide ranging. We reviewed my drugs (all of them), and having been on antidepressants for many years, she thought we should investigate the possibility of a resurgance of depression. She asked me who had originally prescribed my Trazodone, and Elavil, and at some point Lexapro. It was my medicine doctor Mark.
While I was with her, I asked about where I was able to go, and whom I could see under the Ryan White funding. She was going to have Nakeisha (financial administrator) talk to me, and give me guidance, but I walked out without getting to talk to her, because my brain wasn't working. Rachel wanted me to see Mark, in order for him to evaluate whether my antidepressants should be considered.

I had an appointment scheduled for the 17th, but missed it because I got the time wrong, so I rescheduled it, and finally saw him yesterday. I have seen him once before, and the visit was covered by RW, but yesterday was a fiasco.
I presented myself at the reception window, and my old friend wasn't there any more. The woman checked my information in the computer system, and asked if I had my insurance card with me. I told her I don't have insurance anymore, but the visit was going to be covered by RWCA. "Ryan what?"she said. I replied Ryan White.
She says "I don't know what that is". I replied it is a national fund for people with AIDS. She says "I still don't know what that is, I can't enter that on the computer. Our billing system won't allow funded projects to be listed in the computer......I'll have to call my supervisor." I gave her Nakeisha's name, and explained that she could answer her questions. .......Nope, she didn't want to hear that. A couple of minutes go by, and here comes the supervisor. She sidles up to the receptionist, and asks what the problem is. I again explain, Ryan White. She replies"What's that?" Now I'm becoming a little irritated. So I blurted out " RYAN WHITE, you know, the little boy who died of AIDS! There has been a foundation in his name for years, to help poeple living with HIV/AIDS to access the healthcare they would otherwise be refused!"
"Please call Nakeisha, she can clear this up!" So dumb, and dumber dial Nakeisha, and she is out of the office til Monday.
Just Great! Then dumber gets an idea, and says "lets call ______." So they did. Also out of the office.
Dumber then decided to just write it in across the top of the charge ticket, and it would be sorted out later. She asks me to repeat what this was again. "Ryan White Care Act" I exclaimed (thinking that I may have to write it for them, because they could'nt seem to remember those four simple words. For criminy sake, you can't tell me that I am the ONLY patient they have ever had with HIV, but it was looking like that was the case. I even started to think for a moment that they were going to turn me away. Finally after much adieu, I was given the ticket to sign.

Long story short, I finally got to see Mark. I told him of the fracas in the lobby, and he was very understanding. He said he would have a word, and clear the matter up. I am so thankful that I have had a really great working relationship with him for so many years. We even got to joking, and giggling about the front desk jockeys. I'm sure it will be resolved, and I will have no further problems.
I told him that I had to stop taking the Lexapro, because it was not covered by ADAP, and I couldn't afford the steep price out of pocket. Trust me folks, North Carolina has the worse ADAP program I've ever seen. Only the bare basics are covered. HIV drugs, antibiotics, a few proton pump inhibitors(Prilosec,Prevacid), and Elavil. That IS the entire list, period.
I had also complained that it made me feel all jittery for a couple of hours after taking it. He did want me to be on it, and said he would get his drug rep enough to bring all the free he coud get his hands on. He asked if I had any at home.
The answer, was yes thankfully. One of the best things about having started the med sharing program here at aidsmeds, was that one of our forum members had sent some in a package with HIV drugs. I have availed myself of the supply sent, and will have enough to last until Mark can find me more. He simply suggested that I take it at HS(hour of sleep/bedtime) instead of in the AM, as it is usually taken. Well DUH!!! I told you my head wasn't working too good. Why didn't I think of that? That way the jittery stuff may happen, but the other nite-nite meds would allow me to sleep through it, and I would still reap the benefits of it's use. Last nite, I took it at HS, and have had no ill effects today.

My frustrations with the front desk jockeys still bothers me on one level, because this Family Medicine Dept. is part of a huge University System. Wake Forest University/Baptist Medical Center. One of the top 50 Hospitals for many years now, with a national recognition.

I guess we still have a way to go in terms of recognition, stigma, and awareness........I'll betcha the desk jockeys have a deeper understanding today, than they did yesterday. It's a small step, but a necessary one. Glad I don't have any problem talking loudly, and freely about my virus. If this had been one of our newer, or shy-er members, they would have been mortified to have to re-iterate Ryan White, and what it is, multiple times.

Gracious!

Oh yeah....as an addendum...... I mentioned in my earlier blog that my VL had replicated to 72,000 copies, and CD4 had dropped by a full 250 in the six weeks I had been off meds, from 650, to 400.
In six weeks of being back ON my meds, my VL has dropped to 250, and my CD4 has climbed to 785 with a percentage of 28%(27.6) I'll wager that by next lab draw I will fall back into my old familiar pattern of Undetectable, and CD4 of 500-600.