Lisa's POZ Blog

I haven't been around much over the last couple of months. It seems I can't sit in the chair for more than half an hour at most I can't tell if it is my attention span, writers block, or pre-occupation with mini microcosms of my own mechanation. Regardless of the reason, I really miss the banter and concern of the daily forums. I even bought one of those cool chair thingies that massages your back and legs, and has a heating element that just fits the lumbar region. I thought I could use the attraction as an incentive to help me sit here longer, but to no real measure. I have been reading more these days, but even the reading can't help me stay very long in this chair.

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.

This missive will likely be a short-to-the-point kinda entry. It is the strangest thing how my mind has been working. Despite the absolute miracle, and I do really mean to use the word miracle, of getting the opportunity to hug,hold, and kiss my compatriots in Frisco, I have renewed my love bond with some, and fallen in love all over again. A toast to the lovely people I had the honor of meeting this last AMG. Those special moments, and precious hours, have been etched in my mind forever. The beautiful, breathy grin of Michael(Sonoma), telling a story, or the gentle dulcet tones of Jeffrey. I was transfixed with the melodic cadence of Debra and Nikki, as well as the beautiful near brogue of Chris. These things I hold deep in my heart as I may never experience them again. Every moment, hour, and day was so very precious. I experienced a fellowship unprecedented by any experience I have ever had. We knew who we were, we loved each other without reserve, and my spirit soared with each passing day. To date, it has been terribly difficult for me to conentrate long enough to submit this parcel, but I feel it is most important that everyone know how extraordinary these gatherings are. There have most certainly been other things impacting my life that have circumvented my attention here, but I am hoping to rectify all that soon.

I belly up to the computer desk today with ambiguous feelings.
Over the last couple of months, I have realized some fairly heavy facts. While I have known all along that I have been suffering with ostensibly, what we have characterized as “brain fog” many times in the forums. I can remember many a time that we have had illuminating discussions, and compared notes on what anecdotal trials we have employed over the course of time. Once, a long time ago, a few of us were giving Alpha Lipoic Acid a good college try, but I truthfully never got any measurable benefit for myself.

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.

Things have gone fairly downhill over the last few weeks. You can see that I haven't written much of anything since February. My son was in a nasty mva, his daughter was taken by DSS, and he has been living with me during the interim. Serenity went to foster care for a time, but has been living with my other son for the past month while Mike completes the ordered tasks. He gets to visit her once a week at the DSS offices, with supervision.

My whole world has been upended. This whole chain of events has affected me in more ways than I can effectively describe here. Things were much simpler when I only had myself and Sweetie to look out for. I could budget for enough meals out of my meager food stamps(155/mo.) to last me quite comfortably, and even have ebough for a small indulgence, like popsicles, or ice cream. Now I am running out of food before even half the month is gone by, and the few staples that I receive from the pantry are appreciated more than they used to be.
Just what does one do with three two pound bags of fine white corn meal? Not to complain, but I can't think of enough things to make that prospect sound attractive for more than one, or two days.

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

As I proofread my last entry a few minutes ago, it just now dawned on me that Sweetie and I have a shared interest.

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.