Adventures in Medical Care

I was hospitalized last week with a kidney infection that I initially mistook for a mild UTI that I could treat from home by staying better hydrated. Even when I woke up last Sunday with a fever and in so much pain that I couldn’t stand up straight, I figured that I would go to urgent care, get some antibiotics, and go home. Even when the nurse practitioner said they couldn’t rule out kidney stones or other infections, and mildly suggested I would probably be better off going to the ER, I said I thought I could tough out the pain at home for a day or two to wait and see. It was only when the nurse practitioner point blank told me, “I can’t force you, but you need to go to the ER,” that I finally acquiesced.

I’ve always had some mild hypochondriacal tendencies, for which I compensate by making a conscious effort not to overreact. This is necessary with a chronic illness, when I have to guess whether my left arm and shoulder pain is arthritis or a heart attack. I generally play the odds and assume that it’s arthritis, which is all well and good for now, but might be a problem if I ever actually do have a heart attack. It doesn’t help that I have a relatively high pain threshold. I totally could have toughed out the pain last Sunday until it killed me. Literally.

The ER doctor decided to admit me to administer IV antibiotics and monitor a spot they’d incidentally found on my liver during the CT scan to rule out kidney stones or appendicitis. They were concerned about the severity of the infection, and the possibility of an abscess on my liver, both of which had the potential to go septic, given my compromised immune system.

Because I have a compromised immune system.

When the hospital transport workers took me from the ER to my new room, I commented to my family that this would be the first time I’d stayed overnight in the hospital since I was 8 years old, when I’d had surgery on my Achilles tendons.

What I didn’t say, but was in the back of my head the whole time I was in that room, was that this probably wouldn’t be my last overnight hospitalization.

Up to that point, I had been able to delude myself into thinking that, aside from the chronic pain and being slightly more likely to catch whatever might be going around, I could lead a relatively normal life. Being hospitalized for what I’d believed, just a day earlier, only required some extra hydration threw me into a tailspin.

I had a follow up appointment with my primary care doctor on Friday, to make sure I was still recovering well with the antibiotics. With him, for the first time, I voiced my fears: “Is this just the beginning? What the rest of my life is going to be like?”

He started to reassure me, and I reminded him that I’d been a frequent flier in his office in the last few months, most recently for shingles. He paused, and smiled. “You recovered really well from the shingles,” he pointed out. Then he admitted, “The meds could have played a part in you getting shingles.”

He told me that he didn’t want to become a hypochondriac, but his threshold for treatment with me, even for something as simple as an upper respiratory infection, was going to be a lot lower than it would be for a normal person. That he would be more likely to prescribe me antibiotics while taking a wait-and-see approach with anyone else, because my body might not be able to fight it off on its own.

That I couldn’t wait before coming in for a mild UTI, because it was more likely to develop into a severe kidney infection.

Because I have a compromised immune system.

So maybe I can avoid being hospitalized again and again if I go to the doctor right away. But I need to go to the doctor right away. No more playing the odds.

And just because I could tough out the pain, it doesn’t mean that I should.


High Hopes

This time of year can be hard for me. It’s when the reminders of the life I thought I would have come back to the surface, and tug at the thread that I’ve gotten better at tucking back in.

It’s hard to say where the beginning of the destruction of that life actually fell. Was it the day I lost my job? The day I finally got diagnosed? The day of my first major flare? The day I realized it wasn’t going to go away? Those were all a progression, a slide into irrevocable, ugly change. I didn’t recognize at the time how dramatically this disease was going to fuck everything up.

But the reminders of the onset of illness aren’t the hardest part.

The hardest part is being reminded of the hope that came before it.

Looking back now, I’m startled by how much time has passed. It’s been seven years since that awful summer that ended life as I knew it, and the future as I planned it. I’m nearing the end of my 30s. I have no idea what the future holds, but I do know the one thing I really want seems less attainable every day, and I have no idea how to make the next 30 or so years feel worthwhile without it. I don’t know how that can ever be a future I want.

I feel like the last seven years have been a way station that I’ve been trapped in, waiting to have a real life again. And a real life feels unattainable to me now. I can’t work a full week without needing to sleep at least most of one day to recover. I am barely able to stay on top of everything I need to do. I get through the day to day with distractions – work, Netflix, cuddling with my pets. And sleep. Whenever I can.

It’s just surviving, though.

I don’t know if I’ll ever be able to thrive again.

What We Remember When We Are Grown

About a year ago, I attended a “coffee and conversation” event at my neighborhood coffee shop. I thought it was a fantastic idea – the basis of which was to allow people in the community to get to know one another. The initial conversation prompt was to come prepared to talk about your favorite childhood memory.

I have a lot of good childhood memories, so it troubled me a bit that the memory I kept coming back to, and ended up sharing, was one with my paternal grandfather. Pawpaw was a zookeeper at the Cincinnati Zoo, and as a result, many of the zoo trips in my first 5 years involved behind-the-scenes animal encounters and sneak peaks of new exhibits. The memory I shared was of one particular visit when I was about 4, which included several relatives on my mother’s side of the family, two of which were older cousins who I was desperate to impress, and who also were dismissive of me, and, being both older and bigger, often pushed ahead of me and didn’t want to include me. During that visit, my grandpa took us through an upcoming addition to the children’s zoo, which included a huge indoor play area with climbing maze tunnels and slides. It was like a McDonald’s playland on crack. (It is, sadly, no longer there, I would presume because parents complained about being unable to retrieve their children from the child-sized tunnels.) As we approached the entrance, my cousins, of course, tried to push ahead of me, but Pawpaw stopped us at the door and beckoned me forward. “My granddaughter gets to go in first,” he announced, in a tone that was at once proud of me and reproachful of my invading cousins. I felt so thrilled and special, and I walked into that play area ahead of the big kids with my head held high, as mighty and regal as any queen.

An excellent and enviable childhood memory, most would agree. So why, you might ask, did it trouble me that this was the memory I kept circling back to the night of the coffee and conversation event?

Pawpaw was an alcoholic. It was a word that I didn’t learn until a year or so after that zoo trip, when he had an alcohol-fueled breakdown – on Christmas Eve, in front of me – that resulted in an extended psychiatric hospitalization. I remember visiting him once at the hospital. And from that point forward, he became an inconsistent presence in my life. Years sometimes passed without me seeing or hearing from him. Some of this was his choice. Some, I learned later, was because my parents, appropriately, limited his contact with their children when it was not safe for us to be around him. Pawpaw passed away from liver cancer in 1995, when I was 16. It took me 20 years to come to some kind of peace with my relationship with and memories of him.

My maternal grandfather, Boppy, on the other hand, was a consistent and loving presence in my life throughout both my childhood and adulthood. It was devastating to lose him in 2014. He was a rock of support for me and my entire family.

So it troubled me that not a single childhood memory with Boppy stood out with the same color as that day at the zoo when Pawpaw insisted that his granddaughter got to go first.

I thought about it a lot that night. And what I finally realized was that the reason that memory was so strong was the very fact that it was one of the few times in my life that I truly felt special to Pawpaw.

I never had any reason to doubt that I was special to Boppy.

I don’t mean this to be critical of Pawpaw. I recognize that addiction is a disease, and his disease was impacting his life well before he ever had children, let alone grandchildren. I loved him, and I still do. And I know that he loved me, too, but alcohol had too strong a hold on him for it to show much of the time. I can look back now and be grateful that I had those moments like that day at the zoo that allow me to know just how special I was to him.

And it’s not that I don’t have special memories with Boppy. I do – many of them – and their sheer number is part of the reason it’s so hard to zero in on one that stands out above the rest.

I’ve been thinking about this recently in terms of my relationship with my nieces, and how it is impacted by my arthritis. I get Facebook memories now of times that my shoulders were sore from carrying Chloe on them when she was 5 or 6, and of places we used to go together and things I was able to do with her that I’m not able to do with Bella or Charley. I’m only 39. I should be able to carry Charley on my shoulders, or take Bella to festivals. I feel like I miss out on so many opportunities to make memories with them now. I want to be the fun aunt, but instead I’m the one who has to stop to sit down every few minutes, and can’t go on the rides with them.

But that’s okay.

Because they may not remember everything we do together, and they may not think of me as the fun aunt, but they will know – always – that I am here for them.

And they will never doubt it for a moment.

The Bad Days

I am lying sleepless in bed because I slept most of the day. I could probably still fall asleep, regardless, but I don’t feel good about that.

I skipped a grill out hosted by my boss as a reward for a great week at my office to which I contributed – significantly – because I can barely walk right now.

I have my dog closed in the laundry room tonight, with the back door open to the fenced in yard so he can get out when he needs to, instead of in my bed with me, because it’s too hard to get up and down the steps to let him out when he needs to go.

I’m scheduled to work a four hour shift tomorrow. I haven’t been able to do laundry and have no idea if I even have anything clean to wear. I have no idea if walking will be any easier tomorrow. I may have to call in. Again.

I am not just out of spoons, my spoon account is severely overdrawn. I have no idea when the next deposit will be. I do know it won’t be enough. It’s never enough.

I went to my future sister-in-law’s bachelorette party on Friday. We went to the Oaks race at Churchill Downs. I had reservations about it from the beginning. Not about celebrating my brother’s upcoming wedding with his bride, who I adore. About walking. About sitting in flimsy folding chairs. About being there the whole day.

I wanted to be there. I just didn’t trust my body to cooperate.

I don’t even have the energy to go into the nightmare it was, almost from the beginning. I will say that I will never return to Churchill Downs. Their idea of disability accessibility is a complete fucking joke.

There were a lot of tears. Especially at the end of the day, when I genuinely wasn’t sure I’d make it back to the car.

I’m not even 40 yet. How is this my life?

How much worse is it going to get?

Of Dogs and Women

This was Darla. I got her a little over 6 years ago after my house had been broken into twice in less than 6 months and I decided that my pomeranian mix was not quite intimidating enough. I ended up finding this girl, who was 4 years old at the time. She had been adopted and returned to the shelter not once, but twice. The second time, the “owners” didn’t even so much return her as abandon her in a park and disappear.

Not cool. Save for serious illness or sudden homelessness, pets are a lifetime commitment.

So I decided she was going to come home with me, and never see the inside of a shelter again. I kept the name she’d had at the shelter. She had been through enough, I thought; I wasn’t going to add to her stress by making her learn another new name. And come home with me she did, and she quickly became the reason that I couldn’t have nice things anymore. She tore up the vinyl flooring in the kitchen, scratched the paint off one entire wall, and broke down the half-door between the kitchen and dining room. She was never much of a guard dog – although luckily she was big enough that her presence alone was probably a deterrent to would-be intruders.

But she also wagged her stump of a tail adorably every time I got home. (Her tail was already bobbed when I got her. I would never bob a dog’s tail because I think it’s cruel and unnecessary, but I have to admit that her wagging stump was one of the cutest things I’ve ever seen.) She was sweet and gentle with children, and completely oblivious to cats. The first time she met my youngest niece, Charley, who was 2 at the time, she was curious and approached her, but she was completely calm and gentle, even in the face of Charley’s obvious fear at a dog who was bigger than her. She simply sniffed at Charley and gave her tentative kisses until Char calmed down. She got nervous when she was separated my pomeranian, Daisy. (Daisy, on the other hand, is a self-involved diva who couldn’t have cared less about being apart from Darla. I’m not entirely sure that Daisy has even noticed Darla’s absence.)

I knew when I brought Darla home that my time with her would probably not be as long as it was with other pets. Already 4 years old, and a medium-to-large breed mix, not to mention the fact that she came to me with some minor health problems, I was probably lucky to have gotten six years with her. But it was still a surprise when she suddenly went on a food strike, and then wasted away in front of my eyes within just a few days. Less than a week. She’d gone on food strikes before, and had always bounced back, so I didn’t worry soon enough. But then last Thursday, she started refusing water, too. And a day later, when I got home from work, she wasn’t jumping at the back door waiting to go out. She was lying on the floor, unable to lift her head.

She still wagged her stump, though. And she licked my face when I moved her to her bed.

I stayed up with her as long as I was able to keep my eyes open. And by the time I got out of bed Saturday, she was gone.

The night she died, I had a dream about my grandfather. I don’t remember any details about the dream, but he was there. And he loved dogs. Before he died, one of the first things he always asked me when he saw me was, “How are your doggies?” I actually didn’t bring Darla around him much because he would have fed her mountains of cheese – and completely ignored me if I’d tried to protest; he was hard of hearing, and played deaf when it suited him – and that dog was gassy enough as it was. But when I remembered the dream, I realized why he was there – he came to take Darla with him. And I’m sure, wherever they are, he is feeding her cheese and hot dogs and any other table scraps available to both of their hearts’ content.

While I’m still mourning her loss, and wondering why it never freaking occurred to me to get some video of her wagging her stump when she saw me, I’ve also been keeping it in perspective by thinking about how much money I’ll save on dog food now, and how maybe I can replace the torn up vinyl tiles in the kitchen now, and repaint the wall and fix the door.

So when I started looking at dogs available for adoption on petfinder and local shelter websites, it was purely academic. I had no intention of actually GETTING another dog. I still have a dog. AND three cats. It’s not like I’m lacking in the pet department. I mean, surely someday, down the road, there is another dog in my future. But that’s a long ways away. It hasn’t even been a week since Darla died. I’m just researching. Seeing what’s out there.

And I’m definitely not getting a senior dog.

From a kill shelter.

Who probably only has one more chance at a forever home.

Who most people are going to overlook because he’s so old, and has clear pitbull features.

Whose name just so happens to be my grandfather’s nickname for me.

I mean, he would have loved this dog, but it’s not like that’s a sign or anything.

And just because my sister-in-law is going to go to the shelter with me to check him out in a couple days doesn’t mean he’s going to come home with me.


To be continued…

An Open Letter to the Guy I Cried Over in 2017

First things first: Don’t flatter yourself too much. The tears only lasted a couple days, and then I was over you. And honestly, I was more upset with myself for caring at all than I was with you, anyway.

But the reality is, you still did hurt me.

I wonder how it would make you feel to read this, if you read it. If you are the person you try to present yourself to be, it should make you feel bad. I honestly don’t really know if you are that person. I have a sneaking suspicion that, at best, you might WANT to believe you’re that person, but you might actually be the type who would, to quote a comedy special I recently watched, “treat a 4 like a 6 and she’ll be grateful.” Maybe that’s my own insecurity talking. In any case, I might look like a 4, but I still know I’m worth more than that, and I will not settle for being treated like a 6, much less be grateful for it. Perhaps that surprised you.

I am not a person who admits to feeling hurt easily. I prefer anger. Anger has power. Anger is protective. I can hold a grudge like no other. I trained as a therapist, of course. I’m well aware that anger is just hurt’s shield, most of the time. It allows me to feel less vulnerable. I don’t think that’s necessarily always a negative thing, though. Anger can be a driving force. Anger can get shit done.

I could tell a few stories about my accomplishments that stemmed from anger.

But that’s not why I’m here.

There is strength in vulnerability, too. There is power in allowing yourself to feel hurt. It’s a more dangerous kind of strength, though, because it leaves you open for more beatings. Metaphorically speaking, of course. But even though I don’t believe in New Year’s resolutions, it has been a work in progress for me to try to harness that strength more. To crack the shell and allow myself to be more open. To trust more. To let it be known when I have been wounded. That’s why I’m here.

I don’t date much. I don’t like dating. Honestly, at this point, if not for the fact that I still want to have a child, I probably wouldn’t date at all.

So when I first heard from you, someone who, on paper, seemed like he could be perfect for me in every way, I was hesitant, but I decided to see where it went.

And then I began to feel hopeful.

I started to think that maybe, just maybe, there really was someone out there for me.

I started to feel downright fucking optimistic.

There were nagging little red flags, though. Like the fact that conversations were always focused around you. And the fact that plans never seemed to get made. And the fact that there were obviously communications with other women still happening.

Like I said, I am not going to be grateful for being treated like a 6. So I called you on this.

To be honest, I was still hopeful at that point that you would make it right. But instead, you first told me that being nagged about it made you not want to respond to me, and then, when I continued to push it, you cut off all communication with me.

That was a total gaslighting move, by the way. My concerns were perfectly reasonable by any metric, and you acted like I was being irrational and pushy by expressing them. And yet you claim to be a feminist.

And then, a few months later, you sent me a message asking why we hadn’t gone on a date. I was kind of in awe of your nerve, to be honest. Like, was that supposed to be flirty? Was I supposed to be flattered that you deigned to get back in touch? My answer to you was true, for the record: I did move on with my life. And I’m doing great. A job I love, a great family with three beautiful nieces, wonderful friends, and adorable pets. That said, and it pains me to admit this, I still had this momentary flare of hope when I saw that the message was from you, that maybe you would apologize for being shitty, and make it right. That maybe you weren’t actually an asshole. But, of course, you just ignored my response. My question wasn’t entirely rhetorical, though. I still kind of wish you had answered it. How did you expect me to respond?

So, yeah, I was hurt by it. But more than anything, I was upset that I allowed you to have the power to hurt me. How fucked up is that? You hurt me, and I blame myself for letting you.

And it awakened long-dormant insecurities, too. Beliefs that I was unworthy of love and desire. That it was stupid of me to allow myself to believe it might have turned out otherwise. See, if you’d ever bothered to ask, you would have known that I have struggled with depression and anxiety, too. Of course, the difference between us is that I don’t use that as an excuse to be shitty to people.

So, I’m starting the new year by taking back my own power and releasing the self-blame. You didn’t hurt me because I allowed you to; you hurt me because you acted badly. It was not stupid of me to think maybe there was potential between us; it was a dick move for you to string me along and then cut me off when I expressed what I wanted.

I was not an idiot for being optimistic; you were an asshole for exploiting my optimism.

Happy new year, fucker.