Ms. Diagnosed

World AIDS Day 2009

2009-12-01T22:11:00.000-06:00

The first observance of World AIDS Day was December 1st, 1988. Just one year later, I was one of the millions of people who observed World AIDS Day as a person living with HIV.
It's hard to believe it's been 20 years; neither me nor my doctor expected I'd still be alive. When I was diagnosed HIV+ in 1989, AZT was the only antiretroviral treatment available. There have been many effective medications developed over the years, but they didn't come soon enough for the others in my Support Group.
Our group met every Saturday, and as the weeks, months, and years went by, I watched the life drain out of my new-found friends. Their viral loads increased while their CD4 counts decreased and their bodies wasted away. By the time new medications were released, their immune systems were already too compromised to fight back.
Today was a great day in Kansas City; sunny; near 60 degrees. I played golf. While I enjoyed my good health and the beauty of the outdoors on this World AIDS Day, I thought about all my friends that I've lost to this terrible disease, especially dean, Jim, Tim, and Richard.

To Err is Human, To Sleep Divine

2009-11-29T20:18:00.000-06:00

I was recently in a Chicago hotel room, unable to sleep, staring into the darkness that is 4am. Random thoughts ran through my mind like so many apps on an iPhone. You'd think many glasses of wine, a Bailey's, and 2 Rx sleeping pills would be antithetical to a long night of introspection. Au contraire mon fraire. That's when I do some of my best thinking. I just wish I could remember more of it the next day.
This night in question was particularly fruitful, however, because I was catching a plane that morning. I didn't wake up to the routine at home which doesn't often allow much room for thoughts from the night to carry over into the light of day. But on this Chicago morn', I grabbed the little notepad from the hotel room and while waiting in the airport, made notes on several topics that had filled my sleep void. I look forward to blogging about them in the days ahead.
The brain surgery caused my chronic insomnia. The good news is: my ability to sleep is much better than it used to be. The bad news: I have fewer episodes of insomniatic clarity.

The Naked Journal

2009-11-16T23:44:00.000-06:00

Soon it will be 2 yrs since I began this process. Why haven't I posted more? As a sporadic journalist, I expected to be more consistent given the benefits of an electronic journal. I constantly edit and rewrite my thoughts; a messy process with pen and paper. The fingers on my right hand don't cramp up on a keyboard. I have an opinion on practically everything and have experienced countless events that I want to document. So is it just a matter of making the time? For me, it's more like justifying the time. But, there is a much larger stumbling block I've had to confront. The reality is, a journal can be tucked away until you are tucked away. You don't have to be present for the unveiling of all your thoughts and fears, opinions and slanders. I realized I quit blogging when the words I wanted to put in writing were not ones I wanted to share in the present. So I begin, again. But with spirits dampened by the realization that I'm not ready to strip naked for all to read.

525,600 minutes

2008-05-14T19:24:00.000-05:00

I watched the movie Rent today. It made me miss the guys from my old support group that have died. In fact, they all died, at least the ones I was close to -- dean (never capped), Tim, Jim, Richard...

I suspect my feelings are akin to being the last living member of a family. Memories can be shared with others; but experiences can only really be shared with those that are in it with you. The time we spent in group sharing our hopes and fears about living with HIV where at times outweighed by the time spent in hospitals and at funerals.

I found out July 5, 1989 that I was HIV+; I joined the support group that fall. On May 18, 1990, we experienced the first death in our group. I noted 7 deaths in 1991 and 7 again in 1992; there were probably more. Those were the bad years. On August 29, 1993, dean died; that was the hardest. On June 26, 1996, it was Tim, my last connection to our group.

I am blessed with tremendous support from family and friends. But, when there's positive medical news or negative rantings like those of Reverend Wright's -- there's no one to call that experiences the highs and lows of living with HIV. I take comfort in knowing they are together in a better place, pain-free, and I will see them again. My love to all. La vie boheme.

My Guilty Pleasure Chest OR Confessions of a Multitasker

2008-02-28T08:38:00.000-06:00

Let's get right to it. I haven't posted for over a month. Why you ask? Have I lost interest? Been travelling? Sick? No, no. Worse. Much worse. I have considered my blog a guilty pleasure. Recently, I told my sister that working crossword puzzles is one of my guilty pleasures. It was one of those statements that sounded inane as soon as I said it out loud. After a brief struggle to explain, I changed the topic. The voice in my head said: How sad is that?

Usually the voice in my head makes more sense than the voice that comes out of my mouth. That prompted me to explore my philosophy on this subject. I started with what I consider my guilty pleasures. Crossword puzzles (duh), blogging, sudoku, jigsaw puzzles. I'm sure there's more, but this was enough to begin my analysis. Good thing I have this blog, or last year this introspective might have led me to believe that puzzles create some Pavlovian response, or Freudian since I used to work puzzles with my now deceased mother.

I admittedly waste way too much time watching TV, so why didn't that make the list? Because I am a great multitasker. I justify most of my TV time by incorporating other tasks -- folding laundry, paying bills, going through junk mail, etc., etc. I can accomplish something while watching TV. So there is the commonality of my guilty pleasures. They are solitary luxuries which require my full attention. My theory is supported by the fact that I can do a guilt-free sudoku in the confinement of an airplane or a jigsaw if I work it with my daughter.

It is also easy to see a history of justifications. There are many activities I do for fun. Golf, bowl, ride motorcycles, eat out, etc. I can justify this time by acknowledging that at the same time I am getting exercise, building relationships, or some other worthwhile endeavor. So where does this guilt come from that I connect to simply enjoying the pleasures of life? I blame it on the Catholic nuns...

Reboot THIS You ...

2008-01-05T08:11:00.000-06:00

I admit patience is not one of my virtues. Do I even have virtues? One virtue? Oh, but I digress... saved from contemplating that by an actual chain of thought... I am allowed to have downtime. My electronic devices are not! As long as electricity and batteries are functioning, so should every apparatus connected to them. There is nothing more frustrating to me than contraptions with chips that are performing sub-optimally (as my son would say). I hate my increased dependence on machines I cannot communicate with or threaten, my preferred communication style. The list of possible offenders increases relative to my frustration level. The computer, wireless keyboard, mouse, mp3 player. We paid good money for these wonders of technology and when I'm unable to use them for their intended purpose, well, it's not pretty. And let me just state for the record, I am not computer illiterate and am fairly well educated. But when I have to wait for a family member to come home and straighten out these derelict devices, I'm relegated to the helpless girl role. Not a part I play well. The biggest question of all -- What's the point of testing my patience when I freely admit I have none?

Stop and Smell the Fun

2007-12-22T06:28:00.000-06:00

This is the best part of the holidays; I hope I don't miss it. I get to see our sons for four straight days. They live close, but we only get together every few months. I enjoy their company: they're fun, smart, interesting. [As is our daughter who lives with us, so we get the pleasure of her company daily.] Ohio will relinquish my youngest sister, her husband, and their 3 young sons to Kansas City family. They become our nucleus while the rest of my family spins in orbit around them. We'll partake in a 4-day gluttony of food and games. It's easy to be left hungover by the experience. My goal this year is to focus on the 3 F's: family, food, and fun -- without getting caught up in the spin cycle...or becoming a free radical.

Heeding the Voices from Beyond

2007-12-05T16:04:00.000-06:00

I'm a good bowler, but a terrible housekeeper. This morning I bowled a 605 (194, 188, 223), then I came home and cleaned like a mad woman. What inspired me? A nightmare. I was scared clean. A bunch of government types were in my house that had been trashed. It was an obvious set up, but I was totally panicked as I was being arrested. As usual, I had the additional dream quirk that I never figure out. Kevin Bacon was one of the suits, but he was only 4 foot tall, with a shriveled head. I was pleading with him and abhorred at the same time. So it's not the Martha Stewertesque cleaning tips that inspire me. It's fear. Over the years, I've found I don't need dream interpretation; but I best do the obvious. Do I think my Higher Power has nothing better to do than send me a cleaning dream? Hell no. My mother sent this one. Easier to clean than to test that woman.

What's in a Name?

2007-12-04T15:11:00.000-06:00

It took me over 3 months to start my blog because I wanted the perfect name. Is this it? Of course not. I've had great ideas over the years, I just can't remember most of them. Now I'm probably stepping on others toes (sorry) and connecting myself unintentionally with Multiple Sclerosis. Everyone's heard of the Big C. I've had the Big 3: HIV, Brain Tumor, Breast Cancer. This is not to leave out the smaller players: Lyme disease, chronic insomnia, hysterectomy, etc., etc. I've filled out more patient questionnaires at more physician offices than a birth control-free Catholic family of ten would in a lifetime. I used to get perturbed at the task. Now I find it a bit amusing. First I check all the boxes of every diagnosis I've had. Then there's the list of surgeries. Finally, my list of prescriptions that doesn't always fit in the space provided. Then there's my favorite question: How would you describe your health. In all seriousness, I check the "Good" box. I hope, along with me, they have a chuckle at the irony. After all, laughter, good insurance, and a healthcare background really are the best medicines.

Whatever Happed to World AIDS Day?

2007-12-03T13:03:00.000-06:00

I'm fairly certain most people don't know that December 1st was World AIDS Day. They used to be reminded by local and national news, PSAs, even an occasional movie dealing with HIV. I don't know if it's because it fell on a Saturday this year, but I never saw or heard anything about it. I always remember myself anyway; being HIV+ is a built-in reminder. But I don't think it's too much to ask that everyone else be reminded at least once a year that there's a lot of us out here living with HIV. I wanted to start my blog on World AIDS Day...it seemed fitting. But I was gone, so my timing is off; par for the course. I wore my red ribbon pin on Friday and Saturday. One day never seems like enough to remember and honor all the people I've known who've died of AIDS. The only other AIDS pin I saw this year was on the visor of Bob Stoops, the OK football coach. I sure didn't want his team to beat ours, but I admired him for recognizing World AIDS Day.