What it actually feels like

About a year ago, in April, my period suddenly changed. Not that it’s ever been “normal.” When I was 18, I started bleeding for three weeks at a time until I couldn’t climb the stairs to get to my bedroom on the 3rd floor of the house my family was living in back in La Jolla. I started seeing stars and everything would go dark. But without any knowledge of human anatomy and what is “normal,” it took me a while to ask my mom for help.

She took my to a gynecologist. He put me on birth control and iron pills. My mom never mentioned the iron deficiency or asked me if I was ok. The only comment she did make was as we left the doctor’s office. She said, “You better not think this (the birth control) means you can start having sex.”

And thus began over 20 years of really bad times with my reproductive system.

Birth control never stabilized my cycles. It made me feel funny. And there was always pain. Not like, “Ooh, let me hold a pillow and watch Christian Slater movies” kind of period pain. More like blinding back spasms that took my breathe away for 3 days a month and then really bad cramps. I told my mother and she said that she’d never experienced anything like that and I must get it from my father’s side. Note: anything that came from my father’s side was inherently bad, shameful, peasant-like, and therefore not to be discussed. A lot of things about me came from “my father’s side” according to my mother.

I tried pills, depoprovera shots, Lunelle shots (which mostly worked and then got discontinued), patches, etc.

And then I tried getting pregnant at 26 and went off birth control altogether. This, whatever this perfect hormonal storm was, led to a psychotic breakdown four months down the road and a diagnosis of bipolar disorder.

I went back on birth control, now the Nuvaring. But now I was on a revolving door of psychopharmacological drugs that affected hormonal levels in ways that no one told me. Some of them affected my prolactin levels. And when combined, it caused (I believe) autoimmune disease like reactions. From the ages of about 30-34, I felt sick all the time. The symptoms could probably be most closely compared to lupus. Basically, I was miserable, couldn’t get off the couch, and not really a joy to be around. Everyone thought it was all in my head. Including me. I thought that, at my core, I was really a terrible person. And my world crumbling down around me only verified that.

I’m pretty sure Mother Teresa would have been called a cunt if she had been feeling what I had been feeling. As I am no Mother Teresa, I was more like the second coming of the Devil himself. I had zero energy and I was angry all the time.

I got off most of the drugs (suicide attempt in 2015 and subsequent drying out in the ICU will do that to you). My periods became normal or at least somewhat regular. The pain never got better though. Every month, lots of pain. And nothing I took helped. The anemia never lifted either and I spent my 30’s getting iron infusions at a doctor’s clinic in Tucson every few months. It wasn’t a big deal. I just incorporated it into my low energy lifestyle. My parents’ solution was to have me sell my house, give them them money and move in with them. Maybe become an elementary school teacher.

That’s probably the worst idea in the world for reasons I don’t need to go into right now or ever again.

My mood, on the other hand, got better with a lot of therapy and I started living life. I moved to NYC even and, remarkably, I was able to take care of myself.

So now we’re up to April 2020. The pandemic is raging, and I’m stuck in Tucson without any medical insurance. My period all of a sudden gets longer and I’m anemic. I go to my doc and get B shots but can’t get an infusion because I don’t have recent blood work.

I make it back to NYC and finally get into Planned Parenthood in September. When I ask the nurse practitioner what could possibly be going wrong, she says I’m too young for perimenopause. I ask a few more questions and she prints out five sheets from a computer that say, “It could be this but it could also be something else. Or it could be nothing. Ask your doctor.” Which is what I thought I had done. That appointment was so draining I didn’t talk for a couple days afterwards. I just rocked back and forth in bed and cried.

Things just stayed bad. Only now I was at the end of January 2021. My energy is low. My hair’s been falling out. My nails just break and my skin is dry like never before. The pain went from just the already horrible PMS to basically all month long. Sex just hurts. How can I tell the anemia is bad bad and not just “how Vene lives” bad? Because I don’t have the energy to put on clothes or dry my hair after I take a shower because the shower itself has tired me out.

I know things are bad bad bad when I start having heart palpitations and lower leg pain at night. I go to my PCP the first of February and meet with a nurse practitioner with a complaint of chest pain and no energy. I get blood work done. A Telehealth doctor tells me to take oral iron. Except that in my appointment, I told the nurse practitioner that I don’t absorb oral iron. Never have. And it only got worse with GERD because I had to take acid reducing medicine (HCL is helpful to iron absorption). What I don’t know at the time is that the medications I’ve been taking to control the GERD–proton pump inhibitors (Omeprazol), H2 blockers (Pepcid), and antacids–can also induce or worsen iron deficiency anemia. This I learn on my own just by reading. It’s how I learn a lot of things doctors never acknowledge or tell you themselves.

You know what I do get told by everyone? Do some stretches to help with the pain. Maybe yoga. And eat leafy greens. Like I’m an idiot. Also, this is just bad advice for my particular body. I need heme iron, which only comes from animal protein. And part of the pain I’m dealing with now constantly is that I’m too stretchy. I’d wake up in the morning and body parts would hurt like they’d been pressed out of joint by an unfriendly giant. Everything about me is too stretchy.

If you’re a guy, none of this might register with you. But I’m a 41-year old woman. And even most of us women don’t hear about the negative experiences other women go through related to their reproductive systems because it’s just not talked about. But I have three friends at this point who’ve had hysterectomies because the bleeding and pain were so bad (adenomyosis, endometriosis, fibroids). All their stories include suffering you can’t imagine. Not just the pain but the iron deficiency anemia that robbed them of normal lives.

And that’s where I’ve been for the better part of a year. What’s normal is debatable, especially in a pandemic. But I know my body. I know when something is wrong. And no one is listening. So…I go to Forward, a concierge-like doctor in Manhattan. They don’t do anything special except for one thing. They run a second blood panel on me. My CBC keeps coming back saying I have moderate anemia (my hemoglobin is at a 9). But when the second panel comes back (Iron, TIBC, Ferritin), it says my ferritin is at a 3.

Still, no help. Again I’m told to take oral iron. When I push back and say it doesn’t work and I need an infusion, I’m told that I’ll need to go to my PCP for a referral to a hematologist…whom I’ve already gone to. Only I’ve never met her. Just staff. And they wanted me on oral iron too. I’m taking the oral iron. I’m using a cast iron pan. I’m using a lucky iron fish to reinforce the iron in the water I’m drinking. Fun thing about it is that iron needs vitamin C for absorption, which means it exacerbates already bad GERD. The GERD only gets fixed one way…a revision of a surgery I had in 2012 for a hiatal hernia. The hernia was so bad, I’d wake up in the middle of the night choking on stomach acid and blowing it out my nose. Yeah. Fun times. I don’t want it to get bad again like that. But the proton pump inhibitors or H2 blockers or antacids that would help with the GERD only make the anemia worse.

I don’t want to eat anymore because everything just leads to esophageal pain at this point. All I can take is baking soda. Too much baking soda and you can trigger depression. Like that needs any more triggering.

Things are bad. Like I can’t take care of myself. I’m freezing because I don’t have ferritin to regulate my body temperature and mild cold feels like arctic cold to me. I don’t even shiver. Iron deficiency anemia can lead to hypothermia at warmer temperatures than normal. I’m not dying of cold because I’m always on my heating blanket in bed, but 60 degrees is cold enough to induce physical pain on its own.

My brain is deprived of oxygen. I can’t read or pay attention. I can’t clean my apartment or cook. I don’t leave my apartment because I don’t have energy and I’m afraid of breaking down somewhere far from home where I can’t get back. I have no one to rely on to help me do anything. I’m reading medical journals to figure out all this data I have that everyone is ignoring. I’m trying to get referrals to a hematologist and gynecologist and a urologist (because that’s a thing now too) though my PCP, but that means getting really lucky with the referrals office upstairs at the clinic.

And the worst part is…I can’t tell practically anybody. My friends’ problems are taking precedent. Even when I start to mention that I’ve been crying a lot or unable to do things or feeling horrible…it doesn’t register. So I just stop mentioning it. I start to lose touch with my body altogether. If I can just block out the pain, the cold, the weakness, the lack of oxygen, the lack of sleep, the ever present tiredness…and just pretend everything is fine, I don’t have to admit how scared and alone I feel…and how often I’m feeling it.

All these doctors and medical people I’ve gone to have said to go to the ER if things get bad. Which they do. I almost black out because I got up too fast, and fall down a flight of stairs onto my back. This, I figure, is enough to warrant a trip to the ER–a fancy one in downtown Brooklyn–where I am told that my anemia is only moderate and I should go home and talk to my PCP. Actually, they say they’ll get me in with a hematologist but that’s a lie because they know I have an HMO and they can’t refer me. But they want me off their service, so to home I go.

Finally, my sister (a gyn) listens and starts trying to get me help. Help is a visit with my actual PCP. And wouldn’t you know it, suddenly I get referrals. She gets on the phone herself while we’re in the office. Of course, it means a lot of work for me keeping all these appointments in order, the names of the doctors, the referral paperwork, all the test results, the travel, the waiting rooms, retelling my story over and over, the poking and prodding, and the blank stares of health care staff who are overworked.

The gynecologist cancels my appointment but my sister had already gotten me into a hospital at the far end of Queens in some town called Floral Park. They can fit me in same day if I can make it. It’s a schlep out there in the rain. A long visit in a freezing office. And a biopsy in which part of my uterus is just ripped off and I begin to bleed a little and cramp real bad. And then a long, cold train ride back to Brooklyn in which I cannot cry even though I want to because it will consume the rest of what little energy I have and I need to make it home from Barclays. Which I do. And then proceed to collapse in bed, on my heating blanket, and cry from the pain and exhaustion. Crying on my bed from pain an exhaustion is pretty much par for the course these days. Who knows this? Very few people. Not because I’m not sharing it. But because I might as well be saying it in Klingon.

Why the biopsy? Because I’ve had a transvaginal ultrasound, ordered by someone at my PCP’s office months back, and it shows a heterogenous uterine lining that is cause enough to warrant a biopsy. ONLY NO ONE’S EVER TOLD ME EVEN THOUGH THEY’VE SEEN THE REPORT. And no one has told me that, while a hemoglobin number of 9 is in fact moderate and not great, a ferritin level of 3 is fucking insane and actually severe (the minimum for normal is 12, but good is at least 40). It’s the secret part of the story that reveals that I don’t have moderate anemia. It’s really fucking bad.

Are you exhausted yet? Because I still don’t have answers and I’m really fucking exhausted. And I still have to advocate for myself and somehow take care of myself. So no, I don’t want to be friends with anyone right now. Not when my uterus feels like it’s getting kicked every five to 10 minutes, every day. Not when I can’t throw the trash downstairs without taking an hour to recuperate once I’ve come back up the stairs. And I’m leaving things in weird places. I’m unable to remember things. And I’m not eating because I can’t figure out how to make food, even with a stocked fridge and every food makes the esophageal pain worse.

How do you live independently in NYC when these are your limitations?

I get my first iron infusion on the 17th. But I’m far from an answer and a cure. Is it adenomyosis? Is it Ehlers-Danlos syndrome? Is the solution an IUD or is it a hysterectomy? Is the IUD only going to cause more problems? How will I respond to the iron? And when do I start feeling like a human being again? When does life start? Because it’s horrible right now and I’m barely able to take care of things as an autistic when I’m at 100%. There’s no one who’s going to take care of me if things get worse. There’s no home to go to. No parents who will buffer costs. No husband who will run errands. Nobody to help me recover here if I do need surgery. Everyone who does love me has stuff going on too.

And when I do have one good day out of five, it makes me believe that I’m making the whole thing up.

My 25% looks like most people’s 75%. When I feel like I’m drowning, I still look like I’m fine to everyone because I can handle a whole lot, my depression looks like agitation and anger and not moping around with a sad face, and I’m really good at faking being ok. Why? No one wants to hang out with someone who’s fragile or a burden.

I’m disappointed in one friend in particular and I don’t know what to do with him. Maybe he doesn’t get it because he’s a dude and young. Maybe no one can get this. Should I be disappointed? I don’t know. But I don’t know anything at this point because I’m so out of it. I just want that to register. I don’t want to be a burden. But some kindness would go a long way right now.

Am I a cunt again? Probably. I feel like I’m losing it.

I JUST WANT A HUG. That’s it. I don’t need anyone to understand it all. I just need someone to say, “I see it’s really hard for you right now. I know this isn’t you all the time. Here, take a breather. How can I help? I won’t demand anything of you. I won’t be disappointed in you if you can’t do fun things. I just want you to relax.”

I’m starting to demand it. Beg for it, really. And help has been coming. Small offerings from different quarters that together are keeping me from going off the deep end. But I need more. I need a village to raise this pale, weak child.

So yeah, it’s a bitch.

Oh, and I have an ant infestation that I have to deal with. So there’s that.

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