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This Father's Day is Different

| 3 Comments
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Now my dad had lung cancer. My dad has lung cancer? YIKES, MY DAD HAS LUNG CANCER! This is a guy that never had a hospital stay ever.  To my recollection he has only been to the emergency room two times.  Once after braking he leg playing football when he was eleven.  Rather than an ambulance, he rode on the handlebars of a friend's bike.   And later after a lid from a Pyrex plate sliced through his hand, after which he actually drove himself to the emergency room.  Plus my dad literally came into this world on my grandmother kitchen table!

My father recently turned eighty while my parents where in Florida over the winter months.   Soon after he was diagnosed with pneumonia, a half of a gallon of blood red fluid was drained from his lungs and he spent five days in the hospital.  I was freaky out!  My dad in the hospital! For almost a week!  I was the ONLY sick one!  How dare that father take away my thunder?  I was projection my fears on my dad.  Was he scared of being poke and prodded, the needle stuck into his skin, the terrible food, etc.?  The situation was the complete opposite.  He was just going with the flow.  Meanwhile, my mom was a nervous wreck.  She has made being worried a profession. 

A few weeks later cancer cells where found in the fluid drained out of my dad's lungs.  MOM: FREAKING! Dad: Shocked, but cool.  The tumor was inoperable and chemo had to be started once they returned home.  I imaged the worse: my dad throwing up all the time, lying in bed for days from exhaustion, etc.   It was nothing like that.  He's only having trouble swallowing which is a common side effect of chemotherapy.  Visiting my dad for Father's Day, I asked him "How does it feel being confronted with your mortality?" He looked at me like I have two heads.  My dad is 40 years older than me, he grow up during the Depression, survived the Korean War and he thinks therapy is for wackos.  He said I feel fine plus my mom's keeping track of the doctors' appointments, chemo scheduling and draining the fluid from around his lungs. 

I value my time with my dad, now more than ever. I've been visiting my parent's house for at least a week once a month.  Now I finally realized the importance of family.  When I was near death I thought who's really going to miss me.  Some of those feeling were from the pain and suffering I was going through.  I just wanted it to end.  Now I realize those thought were very selfish.  

to read more of my gibberish visit my website 



Is NYC HIV Prevention Ad Going Too Far?

| 5 Comments
I currently do not smoke and never have. NYC Health Department still uses "scare tactics" to prevent people from smoking with ads at local businesses which sell cigarettes and through commercials. Graphic images of peoples' lungs, throat, brain and even amputated fingers show the affect of smoking on the body. These are facts not predictions, well not everyone has to have their fingers amputated after a life time of smoking. I do not understand the fascination, the addiction or glamor of smoking. I'm also allergic to smoke and therefore I agree with the "scare tactics" of this ad campaign. 

The city's new HIV prevention ads are a different story. I personally know some individuals who have been HIV positive for over 20 years with no signs of illness. One guy isn't even on medication. So to say that HIV leads to a diagnosis of AIDS and/or some type of side effect is only a prediction. I believe this ad campaign will create an overwhelming sense of fear and even add more stigma to HIV in NYC but I think I'm just preaching to the choir on this one.

Valley of the Dolls

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I recently joined a HIV+ men's group the LGBT Center in New York City.  Some of the guys were on meds others were not.  A lot of the guys who were taking meds still had questions or adherence problems.  I'm not a certified expert but after 17 years of practice I do have some tips on HIV/AIDS medication.

GET A PILL CONTAINER:  (Stop worrying that only old people with Alzheimer's in nursing homes use them.  It's not necessarily the case, so get over it!)  A pharmacy will carry either a long strip with slots for each day of the week or individual pill boxes for people on the go.  Whether going to school, work or taking a trip your pills will be sorted out for each day.  Also, it makes you more unlikely to forget doses or double dose. 

ADD VITAMINS & SUPPLEMENTS:  It doesn't stop with the HIV/AIDS meds. You'll have a few more pills to include in your pill box.  Countless studies have been done on the importance of vitamins and supplements while taking HIV meds.  I would suggest an appointment with a nutritionist or an integrative pharmacist to get the full story.  A lot of doctors only focus on the meds and numbers.  You really need to be proactive, you life is in your hands.  First I would start with a multivitamin.  These HIV meds are toxic, as well as helpful, whatever you can do to maintain an adequate supply of vitamins in essential.  Selenium, an antioxidant nutrient, can lower the rate of progression of HIV and lengthen your life.  Coenzyme Q10 is critical for immune function and combating high cholesterol, which may be a side effect of the HIV meds.  I'm just throwing these out there.  Do some on-line research and/or contract an expert to point out what vitamins and supplements can help your particular case.  The point is to think beyond your meds!              

QUESTIONS FREQUENTLY ASKED: 

1)    Is it okay that I miss a dose or do not take my pills at regular intervals during the day?

Ideally, if you're taking your pills two times a day and start at 8am you should follow up with the second dose at 8pm.  But you might be out to dinner or somewhere else and forget.  As long as you take your pills within 2 to 3 hours before or after 8pm you won't see a different in your numbers.  Missing an entire day for whatever reason is not the end of the world.  Try not to do this on a regular basis and you'll be fine.   

2)    Will I starting wasting immediately?

TRUE: One of the guys in the group actually asked this question.  The answer is NO.  Most doctors and researchers agree the cause of wasting was from meds that are no longer available at least in the US.  Zerit (d4t) and AZT were giving to HIV+ individuals in the 80's and 90's and sometimes, not always, caused patients to lose fat cells permanently.

to read more of my gibberish visit my website 



Sinusitissimo Redux

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You already know about my sinus drama since my last blog Sinusitissimo.  The MRSA infection has ended along with antibiotics. I still have Kleenex throughout my apartment because I'm constantly congested.  I love interior design and thought I should share with you a photo series called "Still Life with Boutique Tissue Boxes." Sometimes I do have a positive attitude about having AIDS.  So go ahead and pass the tissues, because we all have issues. Hee hee!!!

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Designers Against AIDS: The First Decade

| 1 Comment
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The First Book from This Fabulous Organization

Ninette Murk and her talented team has been promoting AIDS awareness to young people throughout the world through music, fashion, design, arts, sports, film and celebrities since 2004.  Now they're proud to announce their first book! "...a celebration of pure beauty, idealism and lust for life....a photo of Marilyn Monroe that has never been published before and over 100 photographers give their vision of pure beauty."  The focus of the book is on prevention through pop culture and will benefit their Education Center, a division of DAA.  HIV prevention and treatment programs have been effected by the global recession, especially in the US such as ADAP.  What a great time to launch this inspiring book to celebrate life and motivate a new young generation of HIV/AIDS activists.  Just in time for World AIDS Day December 1, 2010 and of course holiday gift giving.  For more information and ordering of "Designers Against Aids: The First Decades" please visit http://www.designersagainstaids.com/

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Sinusitissimo

| 5 Comments

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I've officially decided to make Dave's POZ blog a platform to bitch, not that I haven't used my blog to vent before.  I'm always pretending with my friends, "Oh, its okay I was just homebound hooked up to an IV for almost three weeks having antibiotics pumped into me for a sinus infection/ pneumonia/ bronchitis but I'll fine now.  It's all good!"

 

It was actually quite hellish.  The infection had gone on for almost a year, I thought I was suffering from year round allergies and I wrote it off.  November of 2008 I was coughing up monstrous lugies in the shower (sexy!) and after a visit to the rheumatologist I discovered I had broken a few ribs from hacking (no wonder I was having trouble doing Pilates.)  My internist/HIV/AIDS doc was hesitant about prescribing Levaquin (my antibiotic of choice) for the sinus infection.  In the past Levaquin had rapidly decreased my T-cell count and you know how my doc feels about that!  After spending a few months going to physical therapy to heal my ribs I made an appointment to see my ear, nose & throat specialist (I previously had my deviated septum corrected ten years ago.)  OMG he was crazed after examining my head x-rays, and insisted on surgery immediately.  The operation was a success but only for a while.  Also, I was on 100mg of Doxycycline (a pretty strong antibiotic) for two weeks to stamp out any other infection lurking in my body.  This drug did absolutely nothing for me, it was like I was taking vitamins, and in fact it made my infection worse.  I'm guessing I broke a few more ribs in the process of coughing because the pain became unbearable.  Damn, I had MRSA and the only antidote was intravenous Vancomycin, the queen bee of antibiotics!  This drug was super expensive over $1000 a drip bag.  Luckily I only had to pay 5% but after all was said and done I ended up shelling out over $600.  Plus the added inconvenience of the PICC line insertion, making showering a whole production of wrapping my arm in gauze and Saran Wrap, frequent visits from the nurse, the blood test guy coming at 6am (that's the middle of the night for me) delivering at my apartment at 10pm from the pharmacy and that damn IV pole screwing up my feng shui!


After the PICC came out and the treatment was over, I felt great.  My sputum was clear, not green or brown, and I wasn't coughing up afterbirth or breaking anymore ribs.  I started going to the gym working on my healing ribs and having more energy to give my apartment a much needed cleansing. This lasted only a week.  The coughing returned, the sputum got heavier and yellow and I was back to sleeping half the day away.  Tomorrow I return to the pulmonologist for a CT scan of my lungs.  I'm assuming it won't be lookin' good down there.

THE HALF-BAKED DONUT HOLE

| 8 Comments

briochecutouts.jpgHey, it's your long lost blogger. Obama finally signed Health Care Reform into law, so what does this mean for ME?  There will be some pretty quick changes regarding my Medicare "donut hole."  Remember I've been whining about this in previous blogs ad nauseam (just love spicing it up with a bit of Latin!) The donut hole, or officially the Medicare Part D Drug Benefit Gap, was costing me and 3.4 million Americans either on disability and/or seniors close to $4500 annually most of it paid out in the first few months of the year.  WOW, is right!

Here's the nuts and bolts (or flour and eggs) of the original donut hole.  Back in 2003 our old friend President Bush and our Republican controlled Congress established Medicare Part D for Americans to purchase drugs and allotted $400 billion over the new 10 years.  Obviously this didn't last very long, and that when the donut hole got its name.

The Obama plan uses a combination of $80 billion from private drug companies and $42.6 billion of government money over the 10 years to close the doughnut hole.  I'm doing the math in my head but 80 plus 42.6 doesn't equal 400?  I did have a stroke so maybe you should double check my numbers? NPR reported on this last week - Health Law Timeline: Closing The Medicare Drug Gap.  Here's what's going to happen supposedly over the next decade.

2010: reimbursement check of $250 to pay for cover Medicare Gap. DUH...It's already April, my donut hole is paid off.  I'm now in the "catastrophic state" ($2.25 for a generic or preferred drug and $5.65 for other drugs, or 5% coinsurance, whichever is greater.)

2011: This is the good part, 50% off brand name drugs. Truvada $980, Kaletra $739, Lovenox $702 - all slashed in half as a "gift" from the private drug companies, until my donut hole is paid for!  Keep in mind the $80 billion is supposed to last for 10 years.

2012: Ditto.  

2013->2020: The government will add 2.5% to the private drug money and eventually reach 25% by 2020.  Magically private drug companies and government subsidies will equal 75% off brand name drugs.   Generic drug don't really register in my budget, there's affordable.  But they will also be subsidized exclusively by the government up to 75% by 2020.  Kind of like the "catastrophic state" for generic drugs is now.

Let's hope that they can deliver. The $80 billion was non-negotiable and Obama had the support of Big Pharma in one fell swoop.   Big Insurance was now the enemy, Big Pharma was our friend.  No Socialist Obamacare ads from drug companies, no band of Teabaggers chanting "Communist Drugs," etc.   But Big Pharma will still pour millions of dollars into TV commercials, print ads, and sale reps. They will continue holding conventions and education seminars about "their latest development" which is probably a combination of drugs or a drug will a new name which simultaneously treats another disease, ALL with new patents which last 20 years.  Who knows how much the donut hole with cost in two decades?  It's still all about profits and not patients.

ALERT: For New York City Only

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Is Bloomberg Spinning for Mayor?

BloombergAllen Roskoff has worked for New York City politics for many years and written a blog about Mayor Michael Bloomberg's position regarding LGBT issues and AIDS.  Bloomberg claims to be an Independent, but looking at his record he seems to be more of a Conservative.  I've highlighted some of these points and I also suggest visiting akawilliam.com for more information regarding Bloomberg and other LGBT issues.  I'm still stumped, I don't really like Bill Thompson's positions either.  You'll have to decide for yourself, but do it before November 3rd!

Bullying in the Schools

Michael Bloomberg vetoed the Dignity for All Students Act passed by the City Council in 2004 and refused to implement it when the Council overwhelmingly overrode his veto, calling the bill "silly." In September 2008 before having to face an election year, Bloomberg rushed an anti-bullying program into place. In a study in June of this year his efforts were condemned as totally inadequate by religious, racial and LGBT groups. Bloomberg perversely now says he supports the state Dignity in All Schools Act, which would compel him to implement a comprehensive anti-bullying program, but still refuses to implement its provisions now as leader and head of the New York City schools.

AIDS Education and Condoms in the Schools

Michael Bloomberg allowed AIDS education to be weakened, with a watered-down curriculum. Bloomberg continued Rudy Giuliani's horrendous policy of banning condom lessons in classrooms--life-saving lessons that were common pre-Rudy? AIDS educators were able to use the lessons to demystify condom use and safe sex. It is shocking to see respectable AIDS leaders such as Sean Strub ("YIKES! I'm checking on this right now." quote from Dave) and Dennis de Leon siding with this obstructionist whose school AIDS curriculum was panned by experts as a pathetic political document that does nothing to engage LGBT youth--an outrage when African-American and Latino LGBT youth are most at risk for HIV.

On LGBT Health Care

Michael Bloomberg's press release claims he created an Office of Gay and Lesbian Health. Uh, that was created under Koch in the early 1980s and dropped under Rudy. Mike's new health commissioner Thomas Farley wants to close bathhouses. His previous one, Thomas Frieden, wanted to end written consent for HIV testing over the protest of most AIDS activists.

Equal Benefits Bill

Michael Bloomberg vetoed City Council legislation to require City contractors to provide domestic partner benefits to their workers if they provide marital benefits. When the Council overrode his veto, he successfully challenged the right of the Council even to make such a policy.

Discriminatory Parades

Michael Bloomberg marches in ethnic parades that exclude LGBT members of ethnic groups from participating, particularly the St. Patrick's Day Parade on Fifth Avenue which is run by a group that refers to gay people as "perverts." He also refuses to march the full length of the LGBT Pride Parade, always starting south of St. Patrick's Cathedral in the Giuliani tradition of criticizing the LGBT community as disrespectful of the Catholic Church.

NYPD'S False Arrests of Gay Men

Restaurateur Florent Morellet says that "as a gay person" that "there is nowhere in the world better to live than a New York City under Mayor Bloomberg's leadership." Florent obviously hasn't had the misfortune to be one of the scores of middle-aged gay men falsely arrested by Mike's NYPD for prostitution in his zeal to close porn shops; arrests that Mike did not condemn when questioned about this outrageous miscarriage of justice.

 

 

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Grieving My Former Life

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Hey, I'm back.  I literally spent half the summer sleeping, no joke.  My sleeping patterns had been reversed.  When I was working at POZ Magazine I was continually tired.  Without having something to occupy by days I still ended up sleeping 13 to 14 hours, missing meals and getting off schedule with my meds.  Searching for answers I started with my psychologist and he suggested I go for a sleep study.  No results of sleep apnea, restless legs syndrome, or even grinding teeth.  Back to square one.  There was talk about changing my anti-seizure medication from a "downer" to an "upper," which made a lot of sense.  My next stop was with an "integrative" pharmacist, he's well-versed in homeopathic medicine, for what he really helped me with was my supplements.  He concentrated on my osteoporosis as well as my sleep patterns and fatigue.  The pharmacist prescribed or 5-Hydroxytryptophan (or 5-HTP) an amino acid which produces serotonin to make you sleep.  I thought I'd solved the problem, but it wasn't easy as that.  The supplements took time to build up in my system; in the meantime I also made an appointment with the new therapist.  We began to discuss my illness (or my illnesses.)  Forever moving forward ready for the next challenge, I never stopped to feel the losses I had experienced.  In six short months I dropped over a third of my weight to become a 115 pounds AIDS wasted weakling of flesh and bones.  The doctors had to drain eight fluid ounces of ascites out of my belly just get a liver biopsy.  Within two months I went on disability to deal with my illness as a full time job.   After twelve years in design I basically had a week to make my decision to leave on disability.  Six months later I suffered a stroke which left me without speech for a few months and the inability to write.  More importantly I had to go on anti-seizure medication to calm my anxiety.  So many pathways in my brain were damaged I couldn't process stress.  At age 35, my teeth were literally falling out of my mouth.  My jawbone was deteriorating and I had osteoporosis.  Crowns were inserted in hopes that they would last for five or six years and then eventually I would have to be fitted for dentures.  In 2007, just as I was getting better, my boyfriend left me after 10 years.  Along with my partner, I lost a lot of mutual friends, and ultimately I was down to two or three friends and my mom, who called me every day.  You're obviously getting the picture. 

 

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Rage, sadness, anger and abandonment had built up inside me since 2004.  I chose this photo since it illustrates many of the losses I've experienced in such a short period of time.  Max, our dog, he lived a long life and his loss was out of my control. I never went anywhere without a book or a newspaper.  Today I have trouble concentrating on a magazine article.  Now I just download audio books and listen to them on the subway.  Despite my persistence in going to the gym, I'm only roughly around 130 pounds.  It's all muscle, skin and bones.  My butt is nonexistent and although I've had my face filled, it's never quite the same.  I was staying with a longtime friend that I knew since I was in college, at his beach front home in The Pines.  The last time I spoke to my "friend" was in 2007.  My boyfriend shot the photo and I'm sure he coaxed the smile out of me, like always.  Loss, loss, loss...at first I was having trouble dealing with this.  Mourning a person that died is one thing, grieving your former life is very abstract.  The grief will always be there in some way, but I can't let it deter me from looking to the future.

 

Keep on keepin' on,

Dplus

 

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"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,

Dplus

 

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