My New Member Introduction - Colin

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!

"HIV & Spirituality" - a sermon by my husband and me

Welcome again Colin! You’ve really been through the ringer, but it sounds as though you have kept up a positive attitude through much of this. You must have been so relieved when they were able to deal with the tumor you had.

You were diagnosed very quickly with PsA, which should ensure that you are treated sufficiently. BTW, congrats on many years of living well with a positive HIV status. It sounds like your life has really come together well, and congrats on your marriage.

Welcome, Colin! I'm so glad you joined us. I have so much respect for people who can live through so much crisis and not only survive it, but thrive...and that is what you have done for YEARS! Wow. I'm humbled by your positive attitude and your ability to adjust to an ever-changing life experience. I only wish I were as able to embrace life as you. Look forward to communicating with you more!

Hey Colin,

thanks for such a wonderful introduction. Glad to see you here and glad to know that you're coping well with all your medications and illnesses. It is sad to know that you can't see your children or grandchildren but it looks like you've got a wonderful family with Jim--and sometimes for those of us who are out, our families of choice offer much more support than our families of origin. I'll be looking for you online ;)

Welcome Colin! You've had a lot on your plate. Sounds like (besides the newish PsA) you have a wonderful life with your husband Jim and your fur-children :) I'm sorry about your kids, that's just awful. Two of my brothers are gay and I can't imagine not letting them seeing my children. They are wonderful people (as are their spouses).

A lot of us here struggle with chronic depression as a result of this disease. You have so much experience and you might have some ideas for the group on how to cope.

Colin, thank you so much for that introduction. What a kaleidoscope of experiences you’ve had, and how wonderful it is that you’ve survived and thrived. PsA is your newest challenge, and I’m sure you will transform it into the growth experience that you have your other challenges. Your story of the tumor, especially, is truly amazing.
I’m sad about your children and grandchildren, but take pleasure in the thought of you and Jim and your furkids enjoying a life filled with warmth.
We’re glad to be sharing this journey with you, my friend!

Who is treating your PsA? As you well know many if not most of the meds used to treat PsA are contraindicated with HIV? My understsnding is however is that

Zidovudine is somewhat effective. If you haven't already contact the University of Texas. They have a huge body of work with HIV caused PsA. (most goes back to the 90's though) I know there are some biologic drugs used to treat T-cell subsets that are effective against PsA but I don't know much more than that.

I' m glad you found us, and welcome.

Thank you all so much for reading and responding! I'm feeling more and more at home here every day thanks to you!

Back when the arthritis hit, I was referred by my Infectious Disease specialist to a Rheumatologist who is both a PhD and M.D. They’ve known each other and referred together over the years. She hasn't put me on any biologic drugs as of yet. You brought up something that I've just started wondering myself, if my HIV contraindicates some of them. Not that she or any other doctor said anything about that, but it just kind of makes sense to me. What she's prescribed so far (and what I don't think is working are: Gabapentin; Hydroxychloroquine; Nabumatone; Sulfasalazine; Folic Acid; Morphine Sulfate ER; Oxycodone (for breakthrough pain) Prednisone (to be taken in case of flare)

An article in Huffington Post a few months back referenced a study that showed a relationship where Psoriasis "may protect against HIV" -- it doesn't say whether or not this might also be a factor once a person actually has HIV. I can hope! But I can also say that my counts as far as HIV are almost embarrassingly great. One specialist worded it that I "technically don't have an immune disorder" because they're as good as they are. I do have a referral to another Rheumatologist also, at least to get a second opinion, or possibly even switch to their care. I'll see what I think of him.

As far as Zidovudine (aka: AZT) I haven't been on that in probably 15 years. All these drugs are toxic, of course. But Zidovudine is probably the most toxic of them all. The damage it does to bone marrow alone is one reason they’ll take people off of it. Besides, the drugs we’ve come up with since are far more potent, have far less side effects, and dosing is far less complicated. But, if a Rheumatologist actually saw that it might help with my PsA, I’d rethink it. I’ll check out what the University of Texas has done on it! Thanks for that!

tntlamb said:

Who is treating your PsA? As you well know many if not most of the meds used to treat PsA are contraindicated with HIV? My understsnding is however is that

Zidovudine is somewhat effective. If you haven't already contact the University of Texas. They have a huge body of work with HIV caused PsA. (most goes back to the 90's though) I know there are some biologic drugs used to treat T-cell subsets that are effective against PsA but I don't know much more than that.

I' m glad you found us, and welcome.

Psoriasis Linked to Protection from HIV-1, Study Finds

Here's a link to that article in the Huffington Post. Turns out it's referenced from Scientific American, for what that's worth.

Hmmm...never really thought there might be an upside to all this! Good to know (though I don't intend to rush out and partake in any high risk behaviors)


This is old...... but it certainly can be helpful

and here are some related links

I know the university of London is doing some work with a class of biological drugs to treat the actual HIV that they said somewhere (danged if I can find it) that they say should have an effect on HIV. You probably have better contacts and networking than do I. My cousin responds well to NSAIDS at this point but We know thats not going to last forever.And he like you certainly doesn't want to go back to Zidovudine, but wonder if they can get effect from it in low doses like MTX (methyltrexate)

This is WONDERFUL, Lamb!! Thank you! Thank you! Thank you! I'm also sharing these links with Jim so he can look at them for me. He fills in my gaps, and I fill in his! He's amazing in his wealth of research. I'll probably ask him to join this group too!

Yes Wolf, simply store this in your "Things That Make You Go Hmm!" file! Don't go out and make the mistakes I did! ;-)

tmbrwolf329 said:

Hmmm...never really thought there might be an upside to all this! Good to know (though I don't intend to rush out and partake in any high risk behaviors)


Hi Colin,

Welcome to the group ! So glad you can share with us.

Welcome, Colin!

You have already met some of our amazing people, so I don’t need to tell you that you have found a wonderful group! :wink:

Thank you for your story, maybe you should do more writing of that. I enjoyed reading it.

If you need anything, just ask. I am truly glad that you found us.