I’ve wanted to introduce myself since I became a member two weeks ago. I have to thank Seenie for reminding me to do this! All of you have made me feel so welcome already – like family! And I love that. It’s also all the more reason I want you to know more about who I am.
There are actually so many groups here on the roster of Ben’s Friends that apply to me – Insomnia; Pituitary/Brain Tumors; Depression; Psoriatic Arthritis; Depression and Chronic Conditions; Chronic Pain and Pain Management; Caregivers; Laughter & Humor in Healing; Disabilities in general – I am living on disability. But I kinda had to start somewhere and I guess with PsA being my newest and most on my mind, it sort of won out! It’s also the least controlled of my issues, if I’m correct in thinking that pain issues might be resolved once my PsA is better managed. But in my 59 years, I’ve learned never to bank on any one thing completely. And this applies to all of life, not just diseases and illnesses that come along. So, let me see if I can pull together some sort of introduction about myself for you wonderful people!
I was born on April 11th, 1954, on Long Island, NY in a town called… AMITYVILLE!!
But relax; we New Yorkers are much nicer than rumor makes us out to be. Only time will tell if my “Amityville Background” is anything truly “horrifying!” ;-)
I hold a Bachelors Degree in Music Merchandising from the University of Miami, in Coral Gables, Florida Class of ’75. I’m a classical organist, a more contemporary pianist, a keyboardist and a composer. My biggest “claim to fame” is having composed the incidental music for an off-off Broadway play that dealt with HIV/AIDS. I’ve been a church organist/musician since as far back as my high school years.
I was married to my “high school sweetheart” two years after earning my bachelor’s degree. Unfortunately, she had to deal with my suffering from major depression, which showed up shortly into our married years.
For 16 years (1977 to 1993) I was suffering from Major Depressive Disorder. The exact diagnosis was “Atypical Refractory Unipolar Affective Disorder.” It was only by sheer luck that I found one of the world’s leading psychopharmacologists to treat me, and that his office was within 45 minutes driving distance from my home. In some cases, people would travel from the other side of the globe to see this man – Dr. Jay D. Amsterdam of the Depression Research Unit of the Hospital of the University of Pennsylvania, in Philadelphia.
Five years into my depression, Jay was willing to bet his entire career that I had to have a pituitary tumor causing it all. No medications would relieve my depression; my weight had blossomed from a norm of about 135 lbs up to 225 lbs; my waist had grown from 30 inches to over 44 inches; my overall appearance had become what is known as “cushingoid,” meaning not simply weight gain but also fatty tissue deposits now caused me to look barrel-shaped, my face now a round “moon face,” and a fat pad commonly referred to as a “buffalo hump” had grown between my shoulder blades. My body was producing over 260 times more of my own naturally occurring steroid (Cortisol) than normal.
For most of those years we didn't have a definitive way of diagnosing such tumors – at least not a safe way. Smaller tumors, otherwise known as microadenomas, were nearly impossible to see that deep beneath the brain by MRI or CT Scans. Then, around mid-1992, Jay learned that the National Institutes of Health (NIH) in Bethesda Maryland had developed a still experimental method of diagnosing such microadenomas.
The data that Jay had collected on me in all those years finally paid off. I was scheduled for admission into the NIH for two months of research, including their experimental “Petrosal Sinus Sampling” procedure if all the preliminary tests still indicated that I was a viable candidate. And, I was!
The Petrosal Sinus Sampling was performed. That led to scheduling me for surgery on February 25th, 1993 – a “Transsphenoidal Pituitary Adenomechtemy.” That day was the “belated Christmas present” that I had waited for all those 16 years. Finally, I’d be able to enjoy again – to simply enjoy anything again. It was a success, and so worth it.
Over the following 8 months I lost 89 lbs, without diet or exercise. I was then able to buy the first pair of jeans that I actually had FUN trying on and buying – size 29” waist, instead of 44!
Jay had always told me, “The last thing to go away is the FEELING of being depressed.” Once again, Jay was right. Little by little, that 16-year-long bout of depression ended as my symptoms of Cushing’s Disease fell away, literally.
But, in trying to make this as brief as possible yet leave enough encourage questions and discussion, all the data that Jay had collected on me in all those years finally paid off.
I learned of my HIV-positive status on March 1st, 1993 at exactly 1:15 pm. They discovered my HIV status at the National Institutes of Health in Bethesda, Maryland during a two-month research stay for a medical issue totally unrelated to HIV.
Moments after being told I was HIV-Positive, their “HIV Counselor” gave me the following counseling:
(1.) She handed me a book about HIV. The last pages of this book were merely blank lines, like a notebook. She instructed me, “Write down everything you own, along with the name of each person to whom you want to leave each item.”
(2.) She cut the white hospital identification band from my wrist. This white band had been put on me two months prior, the day I was first admitted to the NIH. She then replaced it with a FLUORESCENT ORANGE ONE.
(3.) She then dismissed me with the words, “Go back to your room; And don’t talk to anyone.”
I went back to my room as she had instructed me. But something was different when I got there…
… There was now a BIOHAZARD SIGN on my door.
Perhaps it’s despite the way I was treated that day, or maybe it’s BECAUSE I was treated that way that day… but when the shock of my diagnosis lifted months later, I vowed from then on to do all I could to better the lives of others living with HIV. And now that I see HIV as the least of the ailments I live with, I try to do that in the other areas just as much, if not more.
That “high school sweetheart” and me, well – we divorced soon after that my tumor was successfully removed from my pituitary gland. But during those 21 years of marriage, we did have three children together. And along with the divorce I became a single parent, raising my middle child (my son) by myself for the next 11 years. Today, as I type this, those children are now ages 26, 33 and 36. Not one of them is in my life anymore since I came out, when Jim came into my life. Their religion dictates that they can’t have a gay father, and must shun me. I’ve also not been permitted to hold or even meet my grandchildren. Last I heard I had two, at least – a boy and a girl. But that was 6 years ago and I may very well be more grandchildren now.
On a brighter note here, I’m now out, openly gay and happily partnered to my husband, Jim. While we consider ourselves married for all of our 10 years together, for 3 of those years are honest to goodness LEGALLY married to each other, now that it really is possible for us to do!
Jim & I met in an HIV/AIDS Support room on AOL! We knew each other just as friends online for 9 years before we ever met in-person, face-to-face. We initially met because we really do have HIV in common.
During the 20 years since my HIV-positive diagnosis I have served in the following positions:
Case Manager Assistant: Assisting other HIV/AIDS clients in getting to necessary services such as doctors, dentists and support groups, while at the same time serving as a Peer Educator to them.
Senior Vocational Job Training and Placement Specialist: Action AIDS, Philadelphia, Pennsylvania… Helping other HIV-Positive individuals to re-enter the workforce by teaching them computer skills, English and Math brush-up courses, resume writing and job interview techniques.
Member, The Board of Directors for The Philadelphia AIDS Consortium, Philadelphia, Pennsylvania: Assisting in the decision-making process, determining how Title II, Ryan White Funds will be used to better the lives of People Living with HIV in Philadelphia and its surrounding counties.
Teaching Assistant for the University of Central Florida, College of Health and Public Affairs, Orlando, Florida – Web-Based Instructor for the accredited course: “HIV Disease: A Human Concern” since September 1997 - covering transmission, prevention, the immune system, aspects of living with the virus and the language of HIV/AIDS. Contact with students is done through the Internet, e-mail, online chat, telephone and periodic in-person forums on campus in addition to a weekly class of students in an online classroom setting. This is a required course for students majoring in any health/medical-related degree programs.
I’ve never had any HIV drug combination fail on me. I’ve never become resistant to any antiretrovirals. My only reasons for switching meds over the years was because newer, more potent medications came out that offered less side effects and easier dosing.
My Viral Load has been undetectable for over 12 years, with the occasional “blip” of being barely visible once every 12-24 months.
My CD4’s range from 1150 to 1650, at 49% in any given month. I have nothing to complain about when it comes to HIV in my life personally!
Jim and I currently live in Bucks County, Pennsylvania, 25 miles from Philadelphia and 85 miles from New York City. We are the proud daddies of our two “4-legged, furry children,” Billie Dawg and Opie Dawg, both Basenji-mix rescues!
Shortly into this little bio, I mentioned having been an organist and pianist among my music background. About four years ago, It was getting to where I couldn't play because of the pain building up. My primary care giver had me see a rheumatologist who is both an MD as well as a PhD. She has an awesome, warm personality and you can almost see her mind at work as she absorbs every word you say to come up with her best possible thoughts on what my body is feeling at any given moment. During my very first examination with her, as she was feeling every joint in my fingers, for some unknown reason I said, "I had a small breakout of psoriasis on my elbow a few years ago." Suddenly she says, "Well duh! That's it! You're experiencing psoriatic arthritis." I'd never even heard of psoriatic arthritis before.
Two years ago, I felt pain unlike anything I’d ever felt before. That’s saying a lot coming from a man who once cut a toe off with his Lawnboy mower! I struggled through a few nights of this pain and then thought to call my rheumatologist, describing it in detail. She explained that I was experiencing my first flare. Wow… talk about INTENSE. But I also learned the relief of a single steroid shot. I don’t know if my flares will always be the same as that, or worse. Will they always be fixed with a single shot or will it take more? I’m still new to this. This is why I jumped at the chance to join this group the minute I found you all. I have 100’s of questions but most of them I don’t even know to ask yet. For the past 8 months or so, I’ve been experiencing sores that won’t heal on my arms and legs. Little by little, I’m learning what my body responds to. I have no idea what lies ahead with me and PsA, but it is a relief knowing I have you all to turn to.
I don’t think I could make this introduction any more up-to-date! Thanks for reading it!
