Dave's POZ Blog

"I'm pleased to report that over the weekend we reached an understanding that will help close the notorious 'doughnut hole' in Medicare Part D.  This is a significant breakthrough on the road to health care reform -- one that will make the difference in the lives of many older Americans."   

~ President Obama / June 22, 2009

Yes, hurray hurray for seniors over fifty on meds, most of which are generics, unless they happen to have AIDS.  There are a lot of seniors with AIDS, don't get me wrong, and the number is growing.  But what about me, I'm on a fixed income, am I the ONLY one paying closed to over $7000 to Big Pharma annually?  Every year the "doughnut hole" grows larger: '08 $4050; '09 $4375; etc.  Who knows how much it will be with I'm a senior?  This "doughnut hole" was a typical half-assed Obama move.  No mention of creating a Federal ADAP system, or, god forbid, a PEPFAR for the United States?  (Giving drugs away to AIDS orphans in Florida...that's preposterous?  Uganda...do you want my FedEx number?)  I have written my senators, posted blogs, and even drafted a letter to President-Elect Obama on Change.org, hoping desperately he would make a different.   If Prez Fierce Advocate REALLY wanted to make a different he should have cut the cost of the "doughnut hole" for ALL participants on Medicare, more importantly people with AIDS whose only option is brand name drugs.  I guess Obama isn't man enough to really tangle with Big Pharma, start looking at their balance sheets, and see who's getting rich while people are still dying.  Geez...first I was feeling like a second class citizen because I was too gay, now I'm too young?...fooey!

Trying to be positive,

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Ethically Unsuitable to Serve Our Country

No, I'm not talking about Judge Sonia Sotomayor; don't EVEN get me started on that subject!  Last week I happen to get a last-minute ticket to OUTRAGE, a documentary by Kirby Dick.  OUTRAGE opened during the TriBeCa Film Festival in early May, but still only remains at one theater in Chelsea.  If you're not in a major city, view it online right now!  I saw the trailer and knew that infamous Larry Craig and the public bathroom episode was going to be featured.  Quite frankly I thought it would be more about gay marriage than anything else.   I was never that political, so this documentary really gave me a great history of being a gay male and an American with AIDS.  Politics, just like Hollywood has its share of closeted "stars" or "wanna-be-stars," OUTRAGE shows the hypocrisy of both Republican and Democratic leaders, much to my surprise, during the entire history of AIDS.  During the early 1990's, gay became the new black with issues like don't asked don't tell, hate crimes, which was made into law recently, gay couples given the right to adopt children, and of course gay marriage.  Not to discount these concerns, because I still do feel like a second-class American citizen, but unfortunately AIDS has come to the forefront of my life and I'm pissed.     

President Reagan isn't gay, let's get that straight (pardon the pun,) but it did take him six years to actually utter the word AIDS.  There were people in his administration that were closeted gay males ignoring the issue and disregarding the countless deaths to hold onto their sense of power.  For a politician, except for a small minority, being gay is WRONG, and even the idea of anything related to anything being gay is shunned.  When Senator Larry Craig demonized President Clinton, calling him a "dirty, naughty boy" during his impeachment trial, Craig was probably talking about himself.  It's one thing to be a hairdresser who's still in the closet, but these congressmen, or governors, or mayors of our cities are directly affecting me, feeling like a second-class citizen, not to mention the fact that I've AIDS.  Do we have time to deal with Washington's "coming-out" process?  The documentary rates the voting average for each "allegedly" gay congressman,  all voted NO on anything gay-related, but what really gets me most of them voted against President Bush's PEPFAR, when he launched it during his first term...argh!  OUTRAGE is thought-provoking, very disturbing, and hopefully it will give us that extra bite in our fight for equal rights and/or the end of AIDS.

Trying to be positive,

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Temperatures were rising we had three days of the 90° heat at the end of April, and so was my blood pressure and my temper!

(I know what you're thinking, is this Sybil's 14th personality?!)    

The symptoms and side effects are endless, as if it wasn't enough that I was diagnosed with "male" osteoporosis in my thirties.  Clueless to why its gender specific, men and women BOTH have bones!  It's common or more likely simultaneous when AIDS wasting starts so does bone loss.  I found this out by accident, after getting a second opinion on my dentistry.  Yeah, you've never heard of getting a second opinion from another dentist.  First of all one of them was my ex, and we were going through some sort of a bad patch as I like to call it.  Anyway, I met with this other dentist, and she, yeah she, I felt I could relate to a female better, I'm just saying.  The female dentist told me that not only did I have cavities, enamel wearing away from my teeth; I also had osteoporosis of the jawbone.  Well you don't have friggin' osteoporosis of the jawbone, you just have osteoporosis!  This was crazy; I've been suffering mildly from AIDS wasting right around the time of my 32nd birthday, geez.  My then boyfriend was my dentist at the time we both knew something was going on with my teeth.   I had dry mouth, no I wasn't smoking pot...gag, I just wasn't salivating and this was causing my tooth decay.  Fast-forward through the liver disease, the-didn't-see-it-coming stroke, almost-lethal infection from a TPN tube, break-up with the now ex-boyfriend/dentist and I finally get officially diagnosed with osteoporosis from a bone density scan in December 2008.

Switch to: the rheumatologist office, this was the guy that said I looked "thin and chronically ill," on one of his reports.  I mean, geez I would have said something more like "waifish," in addition I had just returned from the dermatologist in Mexico with $2500 worth of PMMA in my face.  Regardless, he does some blood tests, pee in a cup, yada yada yada, and I'm told to return in two weeks for the results.  (Previous to this, I'd started taking osteoporosis and calcium supplements, drinking more milk, and lots of broccoli, or little trees as my mother used to call them.)  I return, my calcium levels and my vitamin D intake are good, but my testosterone levels are very low.  NO SHIT SHERLOCK!   I know this and the rheumatologist knows this, ever since I was diagnosed with liver disease I had to stop my weekly injection of testosterone because it was toxic to my system.  I know I'm being harsh on the rheumatologist I just can't get over "thin and chronically ill."  Believe me, I was actually into a low dose of testosterone gel, in fact I thought it might bring my mojo back.  Kudos to the rheumatologist for having me check with my PCP and my gastroenterologist, and even recommending an endocrinologist.  My PCP and my gastro had a little conference and I was written a prescription for AndroGel (rub on belly, feel like bull!)  But there was one 'ologist that was left out of the equation, the psych.

Getting the go-ahead from my PCP, I was stoked.  Not only would it build bone it also would increase muscle mass, give me much needed energy and intensify my appetite for food.  It was a win-win, or so I thought.  For the first two days I felt great, then I had trouble falling asleep, and then finally several sleepless nights ensued.  Temperatures were rising we had three days of the 90° heat at the end of April, and so was my blood pressure and my temper!  Short fuse wasn't even a word to describe it I couldn't even go out of the left the apartment.  I was missing therapy appointments because I didn't want to get on the crosstown bus because I just really didn't give a damn.  I thought it was the sudden blast of heat and the fact that I hadn't changed over my closets to spring clothes, that even through me.  Yes there were definitely shades of "roid rage" also coupled with a sense of sheer anxiety.  I was angry I wanted to kill everyone, even myself.  Why bother getting out of bed, why bother eating, why why why why?  Just a note about AndroGel it's the most subtle way to give you an extra boost (1%) of testosterone.  I started thinking about the stroke, and the feelings of hopelessness and isolation.  It was kind of happening all over again but not as severe, because I was on Keppra and other antidepressants.  My stroke, although not leaving any sort of paralysis, screwed up my brain that any type of stimulant or new medicine might leave me feeling suicidal almost instantaneously.  I stopped taking AndroGel and contacted my PCP, rheumatologist, and psychopharmacologist.  My PCP suggested applying half a tube rather than the whole 5g, the rheumatologist couldn't believe I was having such an adverse reaction to the gel and grudgingly prescribed Fosamax, but recommended my PCP's recommendation.  Alas, my psych gave me Clonazepam...HURRAY, someone was FINALLY listening to me.  I'm seeing my psychopharmacologist on June 1, still haven't filled the Fosamax prescription, I've almost had osteoporosis for 10 years I think my bones can wait a bit more.  I want to get EVERYONE on board for a second try.    

TRYING to be positive,

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Sometimes I think the only reason I exist is to give my mother something to worry about.             

There's not going to be any positive spin on this blog, no patina of optimism, or light on the end of the tunnel.   AIDS sucks.  Can I be miserable for a month or so?  Actually I really haven't been happy for years.  I was certainly a great liar in my writing telling stories about spinal taps and diapers with a smile.  Yes, I'm having an Official Pity Party for One.  The combination of losing my internship at POZ, a major screw up on my Social Security Disability and Medicare (which thankfully has been resolved,) new and different medication side effects, and my bike chain breaking on the hottest day of Spring, etc.  I wish I could blame it on Mercury, but the planet is not in retrograde?! 

I'm already still dealing with the loss of superficial friends, who I can only assume were frighten by my illness, or "scared" of hospitals, or possibility I now have nothing to offer them?  Who knows; who cares.  A friend of my suffering from a brain tumor finds it liberating to be free of fake friends, but he also has a boyfriend who stuck with him "through sickness and in health."  God, I sure sound bitter.  In additional my other friends are also "disappearing" as a result of the economy, either from lack of employment or fears of job loss.  I'm only assuming this because of unreturned calls and/or emails, or maybe I just pissed them off.  I have no idea?  Facebook friends are alway there, but you can't cyber-cry on someone shoulder.  My face ain't looking so great either.  I was told to return for another treatment, but because of lack of funds and the swine flu outbreak everything it on hold.  Forget about dating or having sex, you don't even want to know the last time I was intimate with someone, or you probably wouldn't believe it anyway.  I'm actually glad my testosterone is so low it helped me steer clear of a lot of rejection, and stopped me from thinking with my dick.  And what is my goal, my purpose in life, besides paying too much for rent to live in Manhattan?  Feeling alone, immobile and frustrated, thanks for letting me regurgitate on your blogosphere.

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to read more of my gibberish visit my website

....or All My Ologists!

I will NOT mention the fact that I spent a huge sack full of cash ($4375 to be exact) during January and February for drugs through Medicare Part D, which basically made me feel like I had no insurance what so ever.  Finally my drug costs were reduced to a reasonable amount ($156 for a month of meds) which is around the amount I was paying with private insurance...oh wait, I just did?!...  

This is a great time to talk about Medicare Part A & B and the mysterious Part F, with a lot of HIVers' losing medical coverage because of unemployment.  Once COBRA runs out Medicare/Medicaid is the only option for people with HIV, unless a partner/spouse has private medical insurance.  Being HIV+ is textbook for a preexisting condition, sorry!  In my case, I found myself on disability and in the process of ended my relationship with my boyfriend.  We had co-habited and qualified for domestic partner benefits.  Adieu, adieu...privy medical coverage, thoughts of me going to an HMO, even worse a clinic, or paying astronomical amounts of money to my own PCP doc and what exactly is a "referral"?  A lot of worry for nothing, I'm now more in control of my health coverage than ever.  Already having Social Security Disability (SSD, not SSDI) after COBRA ended, I was automatically cover under Medicare Part A (inpatient/hospital) and Part B (medical: doctors, outpatient services, etc.)  Add on magical and mystifying Part F (not sure what happen to C and E?) and for $270 odd dollars a month, you can see doctors every day of the week!

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I'm not sure what bears do in the woods, because I'm not a bear in ANY sense of the word! 

Preferredly, I find myself closer to a night owl, and don't mess with me around 3pm because I'm in the zone.  In no way am I a morning person, and since I was diagnosed with cirrhosis of the liver, I've been force into a regimen of 80mg of Nadolol, a type of beta blocker, per day.  Fatigue is much to wimpy of a word, this med takes me from nocturnal to wanting to sleep thirteen to fifteen hours a day, and still have trouble getting out of bed.  You can see how working at POZ was quite a readjustment to my schedule.  Previously, I could last two days of seven or eight hours of sleep, before I zonked out for fifteen odd hours.  Additionally, Nadolol results in me getting winded climbing up the subway stairs, curtail running across streets right before the signal changes, and puts an end to sprinting to the next corner to catch a bus.  I can only a handle a little bit cardio at the gym, cycling to and from on the bike patch (level ground,) and swimming, which I adore, but am limited to five pool length at a time.  Yoga and Pilates suit me very well, they're "low-impact" or do not increase my heart rate for a prolong period of time.  HELLO...I'm functioning as someone twice my age, or worse, a person who weights 350 lbs.???  Meanwhile, I'm 38, 5' 9", 135lbs., with a 28" inch waist!

In the past month, I've been suffering from a neuropathy "flare-up," primarily in my feet and calves.  It started out with severe cramps, walking was painful and very slow, and descending stairs excruciating.  I found myself back at the neurologist, getting zapped from the electrodes for the nerve tests...ah, just another day living with side effects from my AIDS meds!  My body was in dire need of potassium, as least that's what the doc said.  Bananas, bananas, bananas and tonic - who'd-a-thought tonic has potassium in it!  Also, the worse aftertaste; I almost hurled after a few sips - YUCK!  Obviously, I'm no drinker, my Preppy Badge would have to be return because I could down a bunch of G&T's (gin and tonics) back at the old county club. (Color me Preppy Handbook!)  Finally, Gabapentin was prescribed, a drug originally developed for partial seizures (I suffered from full-on seizures, and multiple partial seizures after my stroke.)  That kind of made more sense when I started researching...something I DON'T do enough of.  You have to know what you're putting in your body.  I'm learning the hard way, believe me.  By the way, there is an end to this story.  Gabapentin is also uses to treat anxiety, also a mood stabilizer, and people suffer from insomnia...EXSQUEEZE ME?  This drug was making me EVEN more tired, but I was experiencing less pain even time I took another daily dose.  The Gabapentin was working, slowly, but still working.  I don't like tonic, but I detest coffee, so I increased my Starbuck's venti iced chai tea to three cups of a day (caffeine and tons of sugar, yum!!!)  Still dragging myself through the day, but productive.

Last week something suddenly chance, I had lost by sense of urgency regarding my sleeping patterns.  On Tuesday, coming from a morning at the dentist I crashed on my bed at 2pm, barely taking my shoes off, and slept until eleven, woke up just to take off my contacts, have a snack, ingest my pm meds and retired another seven hours until morning!  It took me a few days to really that I couldn't see the forest for the trees, or more specifically the dogwood trees, which are now blooming.  It was just my damn allergies!  Allergies obviously affect people in different ways: watery eyes, sun sensitivity, congestion, running noses, etc...or in my case, comatose.  How brilliant to feel normal like "more than 6 million people" who have allergies.  I still don't really accept myself on Nadolol and Gabapentin, but I'm feeling so absolutely ordinary on Flonase and Sudafed!  

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This is a Big Shout-Out to all my supporters and enquirers regarding my PMMA treatment in December of last year...the emails are STILL coming in as we speak!  I was literally overwhelmed with facebook subscribers asking me to "friend" them as a result of the About Face article by Kat Noel in the POZ March 2009 issue.  As some of your already know, I'm very pleased with the treatment by Dr. Luis Casavantes, and I'm planning on returning for a "touch-up." Most patients have two appointments, first the initial and one at least six week afterwards to assure symmetry of the PMMA.  Dr. C just opened another office (for those hesitant to go to Tijuana) in Puerto Vallarta, a resort town on the Pacific coast of Mexico (FYI: Where the Love Boat goes!) Here's a link to DRC Dermatology for more information.

Regarding facebook, this social network has allowed me to connect with people throughout the world dealing with HIV and/or AIDS, and to share my experiences either through my website or Dave's POZ blog. Through a facebook-friend of a facebook-friend, I met JO.RI.AL (aka John Richard Allen.)  John describes his artwork as "more an idea from self-induced art therapy driven from HIV anxiety than it is creative inspiration from myself as an artist."  I just think it's awesome, very inspiriting and educational as well.  Yes, I was in Conde Naste's Vogue years ago (September 1992,) for a desk I designed WHILE I was a model, and a student at Parsons School of Design...okay, enough about me.  Jorial's art transcends individual identity, I represent the thousands of people suffering and striving forward through this disease...one in a million.  Yes, we all want to be loved; yes, we all want to be respected; and yes, we all want to feel normal.  My favorite Harvey Milk quote, "privacy is the enemy."

To read more about John Richard Allen visit Karen Miranda Augustine's blog.

STOP THE STIGMA!

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 "Americans spend $2.5 trillion a year on health care, or about $8,160 per person, more than twice as much as many countries in Europe."

~ Tara Parker-Pope (NYTimes/Well)

This week on the spur of the moment, I decided to attend TimesTalks at the Renzo Piano's fabulously designed New York Times Building.  The topic for discussion was "Inside the News: The Prognosis for U.S. Health Care," lead by Tara Parker-Pope, a health writer for the NYTimes.  The guests included Marcia Angell, MD (a real pistol,) Robert L. Pear (dead weight), Dr. Harold Varmus (an arrogate SOB,) and a special surprise, an ER doctor from St. Luke-Roosevelt, who also serves in Iraq.  He was kind of like Dr. Owen Hunt from Grey's Anatomy, but not as hot (did I tell you about my new fascination with red heads?)  A snap-shot of the audience, there were more doctors than patients.  (Very well dress NYC doctors in fear of losing their beach houses.  At least, that was my take on it!)  Somehow, I thought it would be more like a rally, citizens without health insurance, suffering from a fatal or chronic illness.  No mention of HIV/AIDS at any point during the hour and fifteen minute discussion, or even cancer (that's with a capital "C" and pink glitter!)  There was a heated debate about statins between the ER doc and Harold Varmus.  This went straight over my head.  Yes, I didn't suffer from a stroke, but it wasn't caused by high levels of cholesterol...next subject!

Marcia Angell, M.D. really led the discussion for me.  In researching this blog, Dr. Angell did not make the "short list" for Secretary of Health, but a lot of bloggers and columnists recommended her.  I just downloaded the audio version of "The Truth About the Drug Companies: How They Deceive Us and What to Do About It," Dr. Angell book...if you've been keeping up with my blog regarding reading, you know what I'm talking about.  Dr. Angell first made it clear, during the discussion, that there was no U.S. health care "system."  She stated that "health" is traded as a commodity in this country, HEALTH = PROFIT.  In the grand scheme of things prevention, unfortunately, is afterthought.  Most of us commies know this, and hopefully President Obama and Kathleen Sebelius are going make a different...can I hear an Amen?!  Going back to my opening quote, Dr. Angell stated, the cost of drugs, specialists, and tests (many of them unneeded) are astronomical, and the rest of panel agreed that the US paid the most for all of this services. So where do you start...with drug companies? Marcia, Maricia, Marica also reported that a lot of the ground breaking work at the NIH, and Big Pharma was simply mass producing the drugs...just tellin' what I was hearin'.  The panel did unanimously agreed that twenty years to hold a drug patient was way too long.  Maybe there's a light on the end of the tunnel after all!  My meds costs around $50K per year; over $6000 is out-of-pocket (must to my dismay!)  I'm on Medicare, that's another blog right there.  The consensus was to have a one-pay-in-system, must likely a tax. Fortunately, we already have a host of nationalize health care systems in Europe and right over the border in Canada. Elements of these countries health systems combined with the Veterans Health Administration (VA) and Medicaid, which have been very successful, apparently, at least in price-per-tax-payer, NOT for service.

Germany, according my new BFF Marcia Angell, has one of the am gesundheitspflege besten (one of the best health care in world.)  Dr. Angell highly recommends using Germany as a model (pardon the pun) for the nationalization of health care in the US.  Ich wening Deutsch sprechen.  I'm not even that's was right, two years of high school German, what do you exempt?  One of the most memorial things I learned in German class was the meaning of "gesundheit!"  Literally translated it means "good health."  (I know I'm off on a tangent, but don't you just love how the Germans' pack so much into words like "Gemütlichkeit," there is NO English equivalent.  According to Wikipedia Gemütlichkeit means: the notion of belonging, social acceptance, cheerfulness, the absence of anything hectic and the opportunity to spend quality time.)  Back to my point(s), and I'm making two because of the very timely overturning of an order signed by President Bush in 2001.  "Bless you" can be interpreted in many ways, but ALL leads back to Catholicism.  I think a nun taught me that a sneeze and/or orgasm makes you vurlnerable to the Devil, himself! - HA   I say screw the Pope for denouncing President Obama's decision to go forward with embryonic stem cell research, and screw the American nah-sayers who think that universal health care is communist.  They need an extra serving of Gemütlichkeit!      

Auf Wiedersehen,

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“A book is a gift you can open again and again.” - Garrison Keillor

While working on my “25 Things About Dave” on facebook, which I took very seriously, probably too seriously. And although I'm a blogger, writing doesn't come easy to be either, because I suffer from dysgraphic. That's a whole story. As I was working my way down the list, I realized the stroke had taken from me my loved of books. A twinge of melancholy hit me with I wrote number ten, “Haven't read a book since my stroke in 2005 - concentration issues.” (The stroke was caused by the liver disease, which created portal hypertension inside of my veins - Google it, if you really care.) There a little bit more to the story than that, and I properly can’t describe was actually going on in my brain when I'm attempting to read. After the stroke, I suffered for over a year and half from excessive anxiety. I remember begging my now ex-boyfriend to have me check into the psychiatric ward, seriously. It's was MAJOR. My excruciating anxiety was put in check with some magic pills from my psycho-pharmacologist, but I'm saving that for my unfinished chapter from my website “I'm not myself?!”

After my long illness, I separated from my ex-boyfriend and had to look for my own apartment. Number fifteen read, “I've been going throw a major transition (health, financial, emotional, relationship-wise, etc.) since I left my job in 2004, and I'm getting tired.” (I told you I was taking this list way too seriously!) For most of my adult life I have existed as a nomad, waiting to being an adult, and now 38 ½ years old I think I will always be a child. Planning the move was pretty simple - no car, just a bike (do a need to remind you I live in Manhattan,) no furniture, nothing for the kitchen, just various tschockes, tons of cloths, and lots of books. Non-fiction was my drug: biographies; autobiographies; religion; history, especially New York City; sociology; self-help, mainly during my prolong illness; etc. Without any furniture, the sky was the limit. I bought a couch with the sole intention of building a customized book shelf surrounding it. Every detail was the planned, including the Ralph Lauren Modern Loft (dark navy) Paint. You’re dealing with a serious queen! I’m very proud of my library-esque living room (pictured above,) and even Jonathon Alder thought it was “gorge” (last summer I was an interview with him for an internship.)

Now what do I do? Rather than ended up like that old women, with the book-filled house, in "Fahrenheit 451," who sets herself on fired with kerosene. I do love my books, but that’s friggin’ crazy-ass! Maybe I need more time for brain recovery, perhaps a change in anti-anxiety meds, or just forget ever reading all together, and became an interior decorator...



Ahhh…the possibilities!
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