So I haven’t really been around for the last year. On this blog, I mean. But also kind of in the rest of my life? I guess I just haven’t really felt like myself? I couldn’t make heads or tails of anything going on so how was I even going to write about it?

I think maybe I’ll stop ending every thought as a question now?

Okay. So I haven’t really been around for the last year. Because it’s been a mess of a year. The last twelve months have been challenging, to say the least. Life has thrown a lot of punches my way, and after a few punches I just didn’t have it in me to stand my ground anymore and so I let myself get beat up. I’ve been a bruised version of myself. Defeated, I guess.

Medically speaking, it started with a doctor poorly interpreting some test results and completely misleading me, and then it kind of spiraled from there. I was hot potatoed around between doctors, some of who didn’t exactly have great bedside manners, and so even though it wasn’t my idea or decision to be referred to them, I ended up feeling a lot of guilt about wasting their time and resources. Also I didn’t really have a diagnosis anymore. And when no one really knows what’s wrong with you or how to help you, not only do your hopes get crushed each time, but you start to doubt yourself and your experiences. You wonder if maybe everything is your fault. Maybe you’re the one to blame. I did finally end up in the office of the right doctor, except neither of us were our best selves that day and so it was honestly a bit of a traumatic appointment. And while she did have ideas about treatment, miscommunications led to major delays so nothing actually came from that appointment for another seven or eight months.

Medically, it’s been a mess. And that’s not even the half of it.

It’s also been a tough year for me in my personal life. Nothing big or dramatic. Mostly just the normal angst that comes from watching everyone around you moving on with their lives while you’re still sick. Still stuck. And there have just been a lot of big changes for a lot of people close to me, and those changes have left holes in my life. It’s the natural order of things, and I don’t want it any other way for them, it’s just really hard being the one left behind.

Oh. And then. In the middle of all of that other medical mess I ended up essentially on bed rest for about four months due to some pretty life interrupting pain. After a number of tests and invasive procedures I actually ended up in the hospital for about a week. We weren’t able to totally resolve things, but we were able to finally start that majorly delayed treatment. Except then that was its own disaster because of some intense side effects that could have been prevented had there not been more miscommunications and a long weekend.

Just another big mess. Another round of punches thrown my way. Another set of bruises. Another serving of defeat.

But then. Finally. Various new medications and treatments we’ve been trying have started doing what they are supposed to do and I’m starting to feel like myself again. My sick self, but still. Ever so slowly, I’m starting to get my life back. My sick life, but my life nonetheless.

It has been like waking up.

Waking up from a horrible nightmare. A horrible nightmare that I thought I was going to have to become resigned to indefinitely. One of those nightmares where you know you’re dreaming and you’re struggling to wake yourself up but your eyes just won’t open.

It has been like waking up from one of those nightmares.

Waking up is not as simple and straightforward as it sounds, however. Being awake is its own struggle. Because some days, even though I’ve woken up from the nightmare, I’m still living in a bad dream. A lot of days, actually. Some days are even a terrible dream.

But other days it’s a boring dream, and I mean that in a good way. And then some days it’s even a good dream. Or some parts of some days, anyway. And those days, those parts of days, are like a breath of the freshest of fresh air.

Those days are also the trippiest because as soon as I feel not terrible for even part of a day my head does this thing where it jumps ahead about one thousand steps and starts making big plans. For example, I start thinking about how I should probably be looking for a job. When the reality of severe illness inevitably catches up with me one hour…two hour…six hours later, it’s a mix of “wow I’m so silly what was I thinking” and “this isn’t fair.”

This “jumping ahead one thousand steps as soon as I feel okay for even just part of a day” thing is not new. It’s something that I’ve done every once in a while as long as I’ve been sick. It just happens to be happening a lot more often right now because after waking up from that drawn out nightmare my brain and I are kind of fumbling around trying to find our footing in New Normal.

The thing is, though, as disappointing as it is when I come back down to reality from that “wow I feel okay at this exact moment so I think I’m just all better now and let’s start making big plans” place, it’s been so long since I even went to that unrealistic place that just going there feels like a win.

And so I laugh at myself. Because what was I thinking? And I furrow my brow. Because it’s not fair. And I smile, because oh well. And then I continue finding my footing in New Normal because I’m going to stand my ground when the next punch comes along.

So that’s where I’ve been for the last year. The last messy year.

And here’s where I am now. Awake.

I feel sick every day. I’m in constant pain. Nothing about any of this is easy or straightforward.

But.

I’m awake!

You stopped me in the hospital hallway to see how I was doing. I didn’t remember you from a sedated procedure several days earlier, but I know that procedure couldn’t have happened without you. You were glad to see me up and walking and you wished me well in just the most genuine way. And even though I didn’t remember you then, I still remember you now. Thank you, Carmen.

You were my nurse in post-op. You kept showing up at my side reminding me to breathe. You were soothing and reassuring through severe pain, and you didn’t let them move me until I said I was okay to be moved. Thank you, Mary.

You were my nurse when I returned to the floor after surgery. You were very pregnant, as in when I was re-admitted two weeks later you were home with your new baby. You must have been exhausted, but you stayed past your shift to help me anyway. Thank you, Nicole.

You placed both my PICC lines. If you were at all frustrated when placement took longer than expected, you didn’t show it. Later, you were already out of scrubs and you should have been on your way home when you showed up to adjust my line so that the heart palpitations would stop. Thank you, Marie.

You knew that 23-year-old me was out of place in a ward mostly full of older adults with dementia, and you did your best to make me feel less alone. You were pregnant and I made a hat for your baby-to-be, and then a year and a half later, when I wasn’t even your patient, you made the time to talk with me and show me pictures of your baby boy. Thank you, Nicole.

You saved me from the hallway. You saw what no one else saw, that even though I was young and mobile, I was actually really sick. And later, after I spent days trying to get someone to solve a problem with my line, you took care of the problem within an hour of being on shift. I still think you have magic powers. Thank you, Rose.

You exuded competence and skill and I remember being shocked to learn you were less than a year out of nursing school. It was clear that you were deeply invested in your patients. You were on shift over Thanksgiving weekend and you gave me reason to be thankful. Thank you, Mallory.

You always spent extra time chatting with me. You told me stories that made me laugh, even on otherwise bad days. You most made me feel like just a person, not a patient trapped in the hospital. Thank you, Kristine.

You were quiet but so kind. Your presence always instantly put me at ease. After a stressful situation in the middle of the night with another patient in the room, you knew that I was shaken up and you put your own stress aside to talk me through it. Thank you, Cristina.

You were there for my first tunneled line placement. I wasn’t given sedation and I had no idea what to expect, but you asked me if I was okay every few minutes. And every time you saw my eyes scrunch up in pain you gently held my hand. I never got your name, but thank you all the same.

You were with me for 12 pretty scary hours of my life. I was alone in the ER and sicker than I realized, but you watched me like a hawk. You acted quickly when needed, yet were calm and cool the entire time. You were always one step ahead and I knew without a doubt that I was safe on your watch. Thank you, Ashley.

You did my TPN training. You taught me everything I needed to know to manage my own care and you were the reason I was able to go home. You were encouraging and accommodating and you will always have a special spot in my heart. I hope you’re enjoying retirement. Thank you, Sheila.

You’re my TPN nurse now. You care about fitting my medical routines into my life, rather than revolving my life around my medical routines. You’re the first health care professional who I feel truly understands and validates the challenges of life on TPN. Thank you, Jennifer.

You’re still a student. You’re smart and caring and sincere. You’ve spent hours listening to me talk about my experiences and you don’t even get course credit for it. You’re in this for the right reasons and your future patients are lucky. Thank you, Angela.

I’ve spent months of my life watching nurses at work. I’ve watched you take abuse from patients who don’t acknowledge your skills and training. I’ve watched you care for people who are careless towards you. I’ve watched you watch patients ignore everything you’ve said and then quietly deal with the fallout. I’ve watched you comfort people as you tell them that their loved one has died. I’ve watched you care for patients in ways that go beyond your job description. I’ve watched you struggle due to staffing shortages and budget cuts. I’ve watched you do all of this, while also juggling a seemingly impossible number of other responsibilities, with patience and grace. And dedication. And all too often without recognition.

I could have mentioned many more of you by name, but there are also a lot of you whose names I can’t remember. Just as all of the medical stuff has blurred together over the years, so too have your names and faces. Honestly, though, just the fact that you are able to do everything you do without me remembering you for the wrong reason is a feat of heroism. And name or no name, I know that you were there, and I know that you gave of yourself to help me and others like me during our most vulnerable moments, and that’s amazing.

And I am grateful.

Thank you, nurses.