by Martina Clark
And on the 29th day, there was blood. So. Much. Blood. The natives heard the mournful wails of their sister and knew not to approach the room at the end of the hall. They only approached, silently, to leave offerings of Midol, maxi pads and Giant Chewy SweeTarts.
Alas, my saga of Quasi Pause continues.
Several weeks ago I had a hysteroscopy, undergone to try and find the cause of my endless bleeding. Indeed, the culprit was found. (Or at least one of them.) I had nearly two-inch benign polyp inside of my uterus, which was apparently causing my body to bleed without regard to normal cycles. The bleeding that led me to make up the term "Quasi Pause" because it had been going on and — mostly on — for over a year and a half.
At 52 I had imagined all of this bleeding nonsense would have been long over with and I would be simply sweating in the joys of menopause. But, for whatever reasons, my body has never followed the normal path. I also have HIV, which, apparently, has nothing whatsoever to do with my Quasi Pause, but is always still an issue.
In this case, the HIV did not manifest as a physical factor but it did give me some feels. Going for this procedure reminded me of when I was 28, and, just months after diagnosis, I had an ovarian cyst. When I told my doctor I was having some pain, he dismissed it simply as "probably something hormonal." He, like so many HIV specialists in the early 1990s, had not had many female patients so he wasn't entirely sure how to deal with me. When I insisted he finally referred me to a gynecologist who diagnosed the ovarian cyst. I'd already had one removed in my early 20s so a second one was not a shock.
What was a shock was when I arrived at the hospital on the appointed day back in the fall of 1992 for my laparoscopy, to have the cyst removed, and found they had put up police tape around my door and at the entrance to the operating room to alert medical staff to my HIV. The gynecologist had gone to great lengths to explain to me that he would have to tell his staff that I had HIV. That made sense to me. But when he added that he didn't want them to feel forced to work on my case because of the risk. I both understood but also felt diminished to a speck of contaminated dust.
But those were the early days of the epidemic and nobody much knew what we were doing back then. Nearly 25 years later, however, I'd expected things to be different.
The intake nurse who did my pre-procedure screening for my hysteroscopy, this past August — August 2016 — just two days prior to the procedure, kept referring to my having AIDS.
"HIV," I kept saying to correct her.
"AIDS," she continued.
"HIV," I said. "I don't have AIDS, I have HIV. There is a very big difference, you know. The words matter."
"Of course," she finally said. After that she avoided either term entirely.
If medical professionals in 2016 in New York City still don't know the difference between HIV and AIDS and the importance of using the correct words, we still have a lot of work ahead of us.
The easiest way to remember is that everyone with AIDS has HIV, but not everyone with HIV necessarily has — or ever will have — AIDS. AIDS is a term that was created early on in the epidemic so that people with end stage illness could access disability and other health benefits. It is the end of spectrum of living with HIV. In 2016, however, fewer and fewer people will ever be diagnosed with AIDS, at least in this country. Those who have been diagnosed with HIV in recent years should have access to effective treatment and, consequently, their immune systems should never be compromised enough that an AIDS diagnosis would be assigned.
In fact, when I was diagnosed in 1992, being HIV-positive was considered a presumptive disability, that is to say that they assumed it was simply a matter of time until you would need full benefits. Once viable treatment became available in the mid-1990s, everything changed. Today, in the US, being HIV-positive is no longer considered a presumptive disability. It is now considered a chronic manageable disease. That is a major shift from what the reality was in the 1980s and early 1990s. People with HIV, today — particularly those recently infected and diagnosed — are given a normal life expectancy.
Think about that for a moment. So much has changed.
So, on the actual day of my procedure, this past August, I was also surprised by the tone of one of the nurses who asked me a list of routine questions and then gave me a talking to. When I volunteered that I'd had some pain in my hip and just wanted them to be aware, since I'd be under anesthesia and with my legs in stirrups for the procedure, she asked if I was following up on the hip issue.
"Yes," I said, "but today I'm dealing with this. One thing at a time." I smiled, thinking that was a reasonable answer, particularly since the hip was not a major issue that I even needed to have mentioned.
"You have to take care of your health, you know," she said to me. "You have to be responsible about these things."
Maybe she speaks to everyone that way, but it felt like a scolding. After all, I was there that day doing exactly that, looking after my health. Her tone immediately made me think that she has a preconceived notion that people with HIV are irresponsible. I let it slide and maybe I was imaging it entirely, but it felt unkind. It felt judgmental.
My own doctor — the OB/GYN — has only ever been respectful of me, and for that I am grateful. She, and the nurse practitioner I see as my primary health care provider, both respect that I am well versed on HIV and treat me as an equal. I am their patient and I defer to them on the specifics of medical knowledge, of course, but they still treat me with dignity and are never, in any way, judgmental. They are the models of how health care providers should all be with their patients.
I don't enjoy any medical procedures — who does? — but the words from those women made me uncomfortable. I was already nervous about needing the procedure, and they certainly didn't help. But, conversely, I was that much more grateful for my OB/GYN who chatted with me about music until the anesthesia took effect and I went under.
The procedure was a success and my doctor located and removed the polyp, along with a fibroid. After they cleaned everything out, they padded me up and eventually sent me on my way. I had some bleeding after the procedure, which lasted a few days — as was to be expected — and then it stopped.
Two weeks later, I saw my OB/GYN and she gave me the all clear and said I could resume all normal activities and hoped I wouldn't need to see her again for this problem. I thanked her and headed home, delighted that my life yet again might become somehow normal. Or at least less bloody. An entire four weeks passed and I actually felt good. And then, like the darkened sky of a fast moving storm, I got a sinus infection. Unrelated, I know, but I should have seen it as warning, an omen.
Read more: When You're a Week Late and Middle-Aged
For on the 29th day, post procedure, the blood came back, and in remarkable quantities. And just three weeks after that, yet another gushing period arrived. And left. And now I wait. Perhaps my genetics dictate that I simply will not start menopause until later than most women. (50 is the average and I'm clearly a late bloomer, or should I say, in this case, wilter.) Perhaps I will go back to having regular periods. I do not know. But I will continue to watch and track and see what happens. I will look after my health and, perhaps, offer up some ice cream to the Quasi Pause gods that they will take pity upon me and deliver me to the steps of menopause.
And so, gentle reader, my saga of Quasi Pause continues. At 52, after nearly 25 years of living with HIV, I truly never thought I'd be dealing with these issues because I didn't think I'd even be alive. But here I am. Growing older as we all should. I'm lucky to have these problems.