Letting Go

Leave a comment

As my evaluation dates grow closer, I keep thinking about being sick enough, and whether I even know what that means. Medically, it isn’t my choice whether I’m sick enough; that decision is above my pay grade. It is however, my choice whether I feel sick enough to agree to being listed, and to accept everything that comes with that.

This has been a very hard thing for me my whole life.

When you live within the paradigm of a person with a chronic illness, or a progressive disease, whatever you want to call it, your definition of feeling healthy is often leagues apart from the average person’s definition of feeling well. That discrepancy has reared its head more than once in my life, much to the confusion of people who live within the paradigm of health and wellness.

Imagine my surprise when, at 13, I discovered that most people don’t experience sudden racing heartbeats that make them feel ill. Or the time I found out that it isn’t, in fact, normal to wake up from a dead sleep gasping for air, or feeling like someone just punched you in the center of your chest. Whoops.

How was I supposed to know? I’d never known anything different. And the doctors weren’t asking those specific questions, so I wasn’t answering them.

“How are you feeling?”
“Fine.”
“Are you having any heart issues?”
“No.”
“Have you had any issues with dizziness or fainting?”
“No and no.”

They never asked, “Are you waking up gasping for air?” or “Do you feel sick to your stomach after exertion?” So I assumed that was A-okay. Upon reflection that was probably a giant dose of disassociation/denial but I have enough to unpack in therapy already so, moving on.

I wasn’t stupid. I understood that the other kids could play in PE class much longer than I could, but I could still play. And because our PE teacher was a bit of a taskmaster with no time for whiners, I often pushed myself beyond what I felt my limits were, just to avoid being singled out by her.

But it’s not like my friends and I sat on the swings at recess and debriefed about how we felt after gym class. There wasn’t really anywhere for a kid, especially one who’s always been pretty literal, to gain context for what I was feeling.

And in a lot of ways, that’s still true.

Am I sick enough?

Is the life I have right now so hard, and so distant from where I want to be, that it’s worth pushing all my chips in and hoping to come out the big winner?

If I am sick enough, what does that mean about me and about the “little heart that could” that still beats in my chest? The heart I’ve been betting on my entire life to defy the odds and prove people wrong. And what about the life that I have made purely out of spite and determination? What happens to all that stuff if I give up now? Is it giving up, or is it moving up?

In therapy I’ve talked a lot about the way I personify my literal heart as a character in my life; both friend and adversary, hero and villain.

What does it mean if I agree to exchange it for one of those fancy, normal hearts? A heart that hasn’t known what it is to struggle for each bit of oxygen it provides. A heart with no scars, no history, no quirks.

What part of me do I lose when I lose it?

I’ve talked about this exact thing so much in fact, that my therapist has suggested he could write a letter to the transplant team explaining why he thinks I would benefit from seeing my old heart once it is out of my chest. He knows how important this relationship (and it is a relationship), is to me and thinks it might be best to allow me a moment to say a true and final goodbye. I tend to agree. It feels a lot like I will have to redefine who I am without this other part of me that shaped me and my life in so many innumerable ways.

Then again, Dr. B talks about “the window” all the time at my appointments, wanting to list me while I’m in the window. That Goldilocks zone between sick enough to need a transplant, but not so sick that I can’t endure it. I trust him. I trust his team. Why is it so hard to trust the process?

I don’t want to miss my best chance. I’ve had a front row seat to watching someone I love make the stubborn choice, the wrong choice, every single time they were offered a choice and killing themselves in the process. I refuse to be that way. I have been a fighter my whole life.

Plus, there are still so many things I would like to be around for in the future. So many things I haven’t done, or seen, or experienced. I don’t want to get to a place where the choice is out of my hands, or worse, where there is no longer a choice at all because I missed that window.

My whole life has been a lesson in endurance, physically and mentally. Every day has been a test of how far I could go, pushing boundaries, pushing limits.

Agreeing to a transplant isn’t endurance. It’s acceptance.

It’s saying, “Okay. I’m willing to put the cudgels down and stop fighting this fight. I’m ready to embrace whatever comes next.”

That’s a big pill to swallow, and I know a thing or two about swallowing big pills.

Maybe agreeing to a transplant isn’t betraying my heart. Maybe it’s the last thing my stubborn little Franken-heart and I will do together, one final act of defiance against the disease that has been trying to end this story for decades.

I don’t know.

I truly don’t.

This is where I’m supposed to wrap things up neatly in a little bow and tell you that I’ve found my resolve one way or the other. But this isn’t that kind of story. The choices are too big, the consequences too permanent, and the questions too complicated to tie up that cleanly.

Right now, I’m still sitting with the question.

Am I sick enough?

Maybe the truth is that I won’t ever feel like I am. When your baseline has always been “make the best of it” and “push through,” the idea of being sick enough for something this enormous feels almost impossible to measure from the inside. Enough implies a limit, and limits are not something I have ever been very good at accepting.

I do know this: I don’t want the choice to disappear because I waited too long. I don’t want the window to close while I’m still standing here trying to decide whether I’m brave enough to walk through it.

So for now, I’m doing the only thing I know how to do. I’m showing up. I’m asking the questions. I’m listening to the people who know more than I do. I’m putting my trust in the people who deserve it, and I’m taking each step as it comes.

Or at least I’m aspiring to do. In reality, I’m already worrying about several steps down the line. I need you to work with me here; I’m trying to keep us all optimistic.

And, in the middle of all that trust, hope and aspiration, I’m trying to figure out what my stubborn little heart and I are going to do next.

Perhaps, the bravest thing we have left to do together is let go.

CHD Awareness?

Leave a comment

Last night, while scrolling, I stumbled across a set of images about congenital heart disease. I was not looking for them. They simply appeared. And if I am really honest, they were about the last thing I needed to see after a day of watching appointment after appointment populate my hospital’s patient portal, while also grappling with the heavy emotions of transplant evaluation, again.

What surprised me most was how upsetting they were, even now, even after decades of living with congenital heart disease as an adult. I still carry a familiar tension. I need support, and I also worry deeply about asking for too much of the people who love me. Those two things have always lived side by side in my body. Seeing these images brought that conflict straight to the surface.

This image frames childhood illness as chaos, exhaustion, and loss caused by the child’s condition.
It turns caregiving into spectacle and quietly positions the child as the source of stress, fear, and burnout.
This image literally depicts a parent being crushed under the weight of congenital heart disease. Though the claim is that it shows the strength of the father. For a child seeing this, the message is simple and devastating: you are what is crushing the people who love you.

I want to be clear about why images like these are damaging, and about the difference between what a “heart mom” or “heart dad” might see, versus what a person living with CHD sees.

I am a 43-year-old adult living with congenital heart disease. I grew up as the child everyone worried about, planned around, and tried to protect. Children with CHD learn very early to read the room. We learn to track tone, tension, and fear long before we have language for what is happening inside our own bodies.

Many of the recent AI-generated “awareness” images circulating online depict parents crushed under the weight of CHD. They show caregiving as collapse, exhaustion, and spectacle. Even when shared with good intentions, they carry a powerful implied message for the child at the center of the story.

You are the weight.
You are the cost.

That message sticks.

I know this because I have lived it. When I was a child, my father once joked that I was “more trouble than I was worth.” He did not intend harm. It was meant facetiously, a throwaway comment. But it landed squarely on one of my greatest fears. I internalized it, and I have been unpacking the impact of those words in my life, including in therapy, for the last 30 years.

Children with heart disease already worry about how much they ask of the people who love them. They already carry guilt that is not theirs. Vacations cancelled. Trips cut short. Bills expanding. Time off work dwindling. Over the years, through my time with kids at heart camp, I have seen this weight show up again and again. Children worrying about being too much. About causing stress. About being the reason someone else is tired, overwhelmed, or afraid.

This is why these images matter.

I have created CHD-related graphics myself in the past. I believe there is a meaningful difference between imagery that centers care, advocacy, and love, and imagery that turns the child into the source of suffering. Framing matters. Symbolism matters. What we choose to emphasize shapes how children understand themselves.

This image was created to center protection, advocacy, and love without portraying the child as a burden.
The difference is framing. Children deserve to see themselves reflected as cared for, not as the reason someone else is breaking.

Content that frames illness as something a parent endures because of a child does not raise awareness for that child. It quietly teaches them that their existence is what broke someone else, often the very person they turn to for comfort and care. A parent should be standing beside their child in the fight, not cast as someone crushed by them. A child’s heart condition is part of who they are, but it is not all of them, and it should never be treated as the most important part, even when it demands the most attention.

This kind of framing does not stop with images. It shows up in the language we use, too. Do not even get me started on the label “heart warrior.” I understand why people reach for it, and there are times it IS empowering. It is meant to honor resilience however, timing and situation are key. But for many of us, it carries an unspoken pressure to be brave at all times, to endure without complaint, and to make our suffering palatable to others. When you are called a warrior, fear starts to feel like failure. Grief feels like weakness. Needing rest, softness, or support can feel like letting people down. Children absorb that too. They learn quickly that being loved is tied to being strong, even when they are exhausted, scared, or in pain.

All of this is why these conversations feel so fraught, especially when they happen in public. We are not just reacting to a single image or a single word. We are responding to years of messaging that asks children to carry guilt quietly and to perform strength and bravery convincingly.

When I tried to engage with the person who created these images, my response was not as constructive as it could have been. I was reacting from a place of hurt, and I wanted to give some of that hurt back. It was not my best moment. At the same time, my lived experience was dismissed rather than heard. That dismissal is something many people with chronic illness or disability encounter repeatedly.

We are often asked for our insight or guidance, only to have our reality rejected because it is uncomfortable. Because it does not allow others to pretend nothing is or can go wrong. Or because it requires seeing a child as a whole person who needs many kinds of care, not just care for their disease.

Honoring parents and acknowledging how hard caregiving can be does not require turning children into symbols of burden, martyrdom, or collapse. I truly believe that parents of sick children are incredible. They do carry a great deal of weight, and they deserve to be honored and supported. But not because they are surviving their child. Because they are fighting alongside them. Because they know how to make the moments better, even when they cannot fix the illness.

I want these parents to be proud of what they do. I am deeply proud of my own mother and everything she has faced with me. That is exactly why images like these hurt.

There are other ways to tell this story. Picture yourself not as someone crushed under the weight of your child’s illness, but as someone standing beside them, clearing a path. A parent whose coffee fuels vigilance and care. Whose notebook of symptoms and questions is not evidence of collapse, but a tool of advocacy. Not a martyr, not a survivor of their child, but a partner in the fight.

I believe most people share images like these with good intentions. I am simply asking that as CHD Awareness Month approaches, we also consider their impact, especially on the children who grow up absorbing these messages long before they have the words to question them. Their feelings and well-being deserve to remain at the center of our advocacy.

Not An If…

Leave a comment

On the drive home from my most recent doctor appointment, I didn’t feel dramatic or panicked. I felt quiet. The kind of quiet that settles in when something has shifted but hasn’t fully announced itself yet. I drove, followed familiar roads, and let the conversation replay in my head. This time, when he said the word transplant, it wasn’t like the first time. It is weird to have become accustomed to those words, that idea, over the last couple of years. The first time, it felt like all the air had left the room, like the floor and ceiling had suddenly flip-flopped, and I was listening from 10 feet underwater, words muffled, unable to breathe. This time it was different. When I looked at my sister and she at me, our eyes met in that quiet place between hope and acceptance. We wanted different, hoped for different, but knew the score and that I’ve been living in over-time for a while and perhaps I’ve shot my last hail Mary to save this game.

That night, at home in my own bed, sleep came and went. I think I saw each hour of the night, some for a moment, some for an hour or more. My body was exhausted, but my mind kept circling the same thoughts, not urgently, just persistently. Somewhere between waking and dozing, I realized I was no longer thinking only about what had been said in that room, but about everything that had led me there. The routines I’d built. The changes I’d made. The story I’d been telling myself about why they mattered and what they could achieve.

It was in that space, between the drive home and the restless night that followed, that something became clear.

I think part of me forgot why I started working out, taking Zepbound, and eating healthier in the first place. The last time my case was presented to the transplant panel, I was overweight and for that reason, much like Shark Tank they were out, and I was not considered a good candidate.

Somewhere along the way, maybe because I am stubborn, or because I have a deeply ingrained “watch me” attitude, I convinced myself these changes were proof. Proof that despite what “they” said, I could exercise my way out of a heart transplant. I took it as a challenge, a double dog dare to do the thing that no one else had done before, as if no one else had thought of it. Now, thinking of those words, I hear understanding and empathy. They weren’t challenging me. They were letting me know that getting healthier is always a benefit, but the goal should be to manage, not cure. They were trying to let me off the hook, and I just put myself right back on.

I tend to hear statements like that as challenges. It is how I hear most things people tell me I cannot do. My brain hears “can’t,” and my soul says, “wanna bet?” I will beg, borrow, and steal to turn the can’t into a can, the won’t into a will, the don’t into a done.

But it turns out they are right. I cannot exercise my way out of this. And instead of that realization feeling like defeat, it feels like permission. Not permission to give up, but permission to take the pressure off myself. Permission to take a breath and know that while I can do everything in my power to improve the outcome, some things simply are. Transplant isn’t an if, it is a when, and that when may be closer than I had hoped.

Letting go of that pressure does not mean I stop caring for my body. It does not mean the workouts were pointless or the changes meaningless. They still matter. They matter because they help me feel stronger, because they give me better days, because they make living in this body a little more comfortable and a little more mine.

What has shifted is the reason behind them. I can no longer chase an outcome I cannot control. I need to stop treating my body like a problem to be solved or a test I must pass to earn worthiness. I have to care for it because it is the only one I have, and because it is already doing the best it can.

There is grief in this realization. Grief for the version of the story where effort alone could fix everything. Grief for the illusion that if I just tried harder, pushed more, proved enough, I could outrun what has always been part of me. Letting go of that story is a bit painful, but I know it is necessary. It is also a relief. Relief in no longer measuring every good choice against an impossible finish line. Relief in knowing that my job is not to defeat my heart, but to live alongside it. To support it where I can, to listen when it asks for rest, and to stop demanding that it be something other than what it is.

The last couple of days, I’ve noticed an internal tug-of-war. Part of me wants to prepare everything, simplify everything, get my ducks in neat little rows. Another part of me wants to lie down more, to rest in a way that feels almost instinctual, like a bear knowing it is time to hibernate. At the same time, I want to keep moving my body, eating well, and investing in the future I still very much hope for. On the other hand, I want comfort. Small treats. Familiar shows. Soft things. (No matter how much I talk about wanting a cat, I cannot have one. Not in a box. Not with a fox. Now is not the time, and while I may whine about it, I also know it is true.)

None of these urges cancel each other out, even though they feel contradictory. They are just different ways my body and brain are trying to keep me steady in a season that is anything but.

These last few days, overwhelm and numbness seem to compete for control, and neither quite wins. What’s left is a quiet middle space. Not peaceful exactly, but contained. A kind of emotional low-power mode. I am learning that this does not mean I am avoiding what is happening or failing to process it. It means I am holding things carefully, taking them in doses I can manage.

Thinking about transplant is strange, and my feelings about it fluctuate wildly. It is complex and deeply emotional, filled with hope and terror in equal measure. The idea of how I might feel once a new heart beats in my chest is exciting, and it opens the door to images of a life I never thought possible.

I picture myself on mountain trails. I imagine morning jogs with a golden retriever (Did I borrow it? Did I steal him? Is he mine and I finally pulled the trigger on a dog named Tom Hanks?). I am doing those things purely for fun, because I am told, they can be fun when it doesn’t feel like fighting for your life. I see myself going, and doing, and being someone different, (somehow taller?), freer, less constrained by the quiet calculations and constant double-checking that shape my days now.

And then my thoughts shift to the reality of getting there. All the pieces that have to fall into place. The process of being listed, ranked, and waiting. The logistics, the uncertainty, the surrender to timelines that are not mine to control.

Then there is saying goodbye to the part of me that has shaped me into who I am, the only rhythm I have ever known. That part that I have been angry at, indebted to, bargained with, fought for, fought with, wired and medicated, all so we could blow out one more set of candles together. And of course there is the hardest part, I think, for anyone needing this particular kind of transplant, knowing that for me to receive a new heart, someone else must no longer need theirs. That truth sits heavy and unavoidable. It mixes hope with grief, excitement with reverence. It is the part that reminds me this is not a miracle without cost, but a gift born from unimaginable loss, a loss I have known, a loss I have witnessed, a loss that often feels like too high a price for someone who has squeezed 43 years out of a life they said might not even last a year.

Right now, I am holding all of this at once. Hope and fear. Gratitude and grief. Determination and exhaustion. Some moments I feel steady and grounded, and others I feel raw, distracted, or not quite like myself. None of it is performative, and none of it is permanent. It is just where I am.

If I seem different, quieter, sharper, or more emotional than usual, I hope there can be patience for that. I am learning how to live inside uncertainty without hardening myself against it. I am doing my best to show up honestly, even when that honesty looks uneven.

I still believe in forward motion. I still believe in caring for my body, in finding moments of joy, in imagining a future worth hoping for. I am simply learning that hope does not have to be loud or singular to be real. I don’t have to play the part of optimistic sick person for people to enjoy my company. Sometimes it is complicated, sometimes it is fragile, and sometimes it is just the choice to keep going, one day at a time.

Listen to Your Body

Leave a comment

For as long as I can remember, people have told me to listen to my body. It was practically the soundtrack of my childhood. I heard it from nurses, from my mother, and most recently from my cardiologist, who said it with the same energy as someone offering ancient, mystical wisdom. Going to a high elevation? “Listen to your body.”

It sounds gentle and intuitive. It sounds like something you’d hear during yoga while someone rings a tiny bell. But for me, that phrase has never meant serenity. Listening to my body has always meant one thing: prepare for impact.

My body has never been a calm inner compass. It has been a 24-hour breaking news alert system. “This just in, you might be dying…” Numbers. Readings. Symptoms. Side effects. Every twinge a possible emergency. Every flutter a potential disaster film in the making. .

“Is this a headache or a stroke?”
“Chest pain or arthritis?”
“Am I tired or am I fatigued?”

And my personal favorite: “Do I have a blood clot?” A diagnosis I have never had in my entire life, but a theory my brain presents with the enthusiasm of a kid showing you their newest treasure.

After years of this, listening stopped meaning awareness. It became surveillance. It was less “inner peace” and more “airport security.” And thanks to the alphabet soup of C-PTSD, OCD, ADHD, and other neurological party tricks, that vigilance was cranked up to maximum volume.

To be fair, I was born with a complex heart condition, so paying attention mattered. Small shifts really did mean something. But somewhere along the way, I began to believe my literal survival depended on catching every flicker of sensation before it turned into catastrophe. My body became a project, and I became a project manager who never got a day off.

Eventually, something rewired itself. I stopped recognizing my body as a place where emotions lived. Sensations were never just sensations. They meant illness or medication changes or tests or occasionally “Hey, for real though, you might be dying.” A racing heart was not fear. Tightness in my chest was not sadness. My body wasn’t allowed to feel; it was only allowed to signal.

Even professionals played into this without meaning to. A dull ache? More tests. A weird flutter? More medication. A moment of discomfort? Let’s throw in a scan for fun. No one, including me, considered that my body might also be speaking in the language of emotion.

By the time panic attacks appeared, I’d spent years responding to every sensation as if it belonged to my heart. So when the symptoms started, the doctors and I followed the same script we always had; tests, scans, monitoring. It wasn’t until we ran out of physical explanations that we finally realized: my body wasn’t warning me about my heart. It was trying to tell me I had feelings I’d never dealt with, and my mind was tired of waiting it’s turn.

Now, when I try to feel my feelings, I often get static. What I hear is the echo of a system that kept me alive but no longer matches the life I’m trying to live. Any detachment I experience is not apathy. It is survival being a little overzealous and not knowing it can clock out now.

Even the most basic emotions can hit the old alarms. I rarely assume I am having a feeling. I assume I am having an event. The smallest beep from a microwave or phone still makes my brain behave like it is back in the hospital, ready for a plot twist. It is very Lost in Space. My mind goes full B9 yelling, “Danger, Will Robinson,” and my system responds as trained: shut it down, stay calm, stay alive.

These days, I am trying to listen differently. I am learning to notice the quieter signals: the warmth of a blanket, the gentle rhythm of breathing, the moment of contentment when a room feels safe. I am teaching my body that not every sensation is a threat and not every feeling requires medical intervention. Some things can simply exist without becoming a diagnostic mystery.

People love to tell those of us with lifelong medical conditions to be strong. But strength does not always look like vigilance. Sometimes strength looks like unclenching your jaw, and relaxing your shoulders. Sometimes it looks like rest. Sometimes it is trusting that your body can communicate without sending up a flare. A whisper can be just as wise as a wail.

I am not trying to unlearn survival. Survival has been my longest relationship. I am simply trying to expand it, to let it include moments of ease and belonging and maybe the occasional emotion without the immediate assumption that the end is near.

So when something rises in my chest now, I pause. I breathe. Take a quick look at my vitals, just to satisfy the tiny intern who lives in my brain. (I am still me guys.) But when everything comes back normal, I remind myself that a feeling can simply be a feeling. A heartbeat can simply be a heartbeat. And sometimes the noises I once treated as danger are nothing more than the ordinary soundtrack of being alive.

Maybe this is the real meaning of listening to my body. Not scanning for illness, but noticing the quiet whisper of an emotion before I mistake it for something medical. Not bracing for danger, but letting myself recognize sadness, or joy, or fear, or grief as themselves. I spent most of my life believing feelings were symptoms. Now I am learning how to tell the difference, and even more than that, how to let emotional feelings exist without rushing to diagnose them. It turns out my body has been trying to speak in many languages, and I am finally learning to understand more than one.

Tightrope. (You don’t look sick…)

Leave a comment

Every day, I walk an invisible tightrope. Step by step, I inch forward, steadying myself, fully aware of the drop below. Chin up. Smile. Do not let the audience see the tremor in my hands or the heaviness in my bones. They expect composure, strength, even grace in this precarious balancing act.

So I play my part. One foot, then the other. Smile for the crowd. Hide the weariness. The rope wobbles, but the performance must remain steady. The crowd applauds, but they never see the fatigue, the fear, the longing for solid ground.

Like a Flying Wallenda, I never auditioned for this life; I was born into it. With no other choice, I have mastered the theater of survival, the art of balance, and the silence of exhaustion hidden behind a smile. The rope stretches on, longer and farther than I ever imagined, and though there are days I ache to step down, still I walk. Because the show, it seems, must go on.

The show is my daily life. Over the years, I have learned that nobody likes a sad sack, and people can only tolerate one for so long. But in truth, I am not sad. That part is not an act. Sure, there are days when I do not feel well and must paste on a smile, but even then, I carry joy. I love the life I have built within the confines of my circumstances, and most days, even the hard ones, I am happy.

Still, the act causes confusion. Because I do not “look sick,” “act sick,” or often show the cracks in my armor, people struggle to reconcile the visible with the invisible. Now that I have added workouts as part of my healthcare, it baffles some even more, and I understand why. It is hard to grasp that while I can lift weights or walk a mile, I cannot work an eight-hour day. My tank does not hold that much fuel. Heart failure has diminished my capacity, so I must ration what I have. Doctors’ orders.

Every morning, I wake up and prioritize. At the very top, above all else, is my heart. Keeping it as strong as it can be is not a luxury, it’s an imperative. It is the rope itself. Without it, there is no performance. And I am not ready to say I want a new rope, so it must come first. Because of that I’ve had to drop other things, like 2.5 hours of my work day. I just don’t have the fuel to do it all, and trying makes me so sick that I can’t do any of it. 

I cannot help what others understand or do not. I refuse to wallow in self-pity or bend myself into the narrow mold of what a “sick person” should look like or act like. Even doctors have been baffled, studying test results that scream decline, then looking at me, upright and smiling, and wondering how someone who on paper must feel miserable is not a cranky, bitter mess. And if I am honest, there are some days that I am but that is nobody’s business but mine (and my therapists). I get to present myself to the world in whatever way I choose.  I choose a life of joy, fun, determination, and optimism, even if the world around me can’t make sense of it. So, one foot, then the other, I continue forward.

This is my act. This is my balance. This is my rope. And though the crowd may never fully understand, the show is not about them. It is about me, still walking, still smiling, still here.

I cannot help it if I am cute even when I am very, very sick.

I can’t help it if I am cute even when I am very, very sick.

OCD. My Heart. And Me.

Leave a comment

My heart races for two reasons: one, because it can’t always keep rhythm (damn tachycardia), and two, because my mind insists it’s about to stop. I’m open about my heart condition and my mental health, but I rarely talk about how the two gang up on me.

Today in therapy, I spent the usual 15–20 minutes circling the topic I knew I needed to address. Maybe one day I’ll get straight to the point, but not today. It’s hard to admit when OCD is in the driver’s seat. It feels like failure, like I’ve lost control. But as a previous therapist said, “What you resist persists.” So, I started talking.

First, I recapped my recent cardiac appointment and its not-so-great results. Then, I proudly announced my renewed gym plan, Monday, Wednesday, Friday mornings. Perfect. Predictable. Manageable.

Then I had to confess, last Friday I didn’t feel well, so I skipped. I promised myself I’d make it up Saturday or Sunday. Except I couldn’t. I go Monday, Wednesday, Friday not Saturday, not Sunday. If I went off-script, surely I’d injure myself, exhaust myself, maybe even ruin everything. And then, to top it off, the gym was closed this Monday for the holiday. How could I possibly go Wednesday if I hadn’t gone Monday? Clearly, the whole week was ruined. Not only is my heart failing but I am too. My heart was doomed. Why bother?

I know none of this is rational. These thoughts aren’t truly mine, they’re symptoms. Intrusive thoughts brought to you by OCD.

OCD is a master of manufacturing catastrophes out of nothing. In therapy, I can roll my eyes at the absurdity, but at home it’s harder. I can label the thoughts as silly, but acting against them is another story. Fear, even unreasonable fear, has teeth.

So my therapist and I played “What if.”

“What if you planned to go Thursday instead of Wednesday?”

Then I’d have to go Friday too, which is impossible, two days in a row? I’ll croak!

“What if you could go two days in a row?”

Then I’d be exhausted all weekend.

“What if you weren’t?”

Then it would hit me Monday and ruin the week.

Round and round we went, until finally:

“What if everything turned out okay?”

“What if you worked out three days a week…any three?”

“What if you allowed flexibility without neglect?”

That one hit home. I felt lighter. I could feel my posture change. I am stronger than OCD, I reminded myself. Then my therapist asked, “So, how does Saturday sound now?”

Stubborn as ever, I told him the truth: “I still don’t like it… but I think I could try.”

And I want to try. Because OCD doesn’t just push me to color-code my sock drawer, it can slide into dangerous territory, like keeping me from taking care of my heart. And that’s when I have to remind my brain who’s boss.

So this week I have homework, go to the gym on a day that isn’t Monday, Wednesday, or Friday…just once in the next two weeks. Doesn’t matter if it’s in place of a regular day or in addition, I just have to do it. While exposure therapy is probably the most effective treatment (in my experience) for OCD, that doesn’t make it easy. Still, I believe in doing my homework. So I will do the only thing I ask my students to do…try. You don’t have to be right, you don’t have to be perfect, just try. Here goes nothing.

Ode to a Cat 

Leave a comment

It’s been over a year since I said goodbye to my best friend. In the moment, and the days following I wasn’t ready to talk about what he meant to me, and how deeply losing him hurt. I am ready now. 

When I picked Gus, or rather he picked me, my intention was to help my senior cat Seven cope with losing his companion and my first cat Otto. After Otto passed, Seven was a wreck and wrecking my house. I knew I didn’t want and couldn’t have another kitten. Raising Seven from a kitten was like adopting a tornado mixed with a mean little demon, and now that he was an old man and much less likely to randomly attack, I did not want to start back at square one. 

Enter the Cat Association, I had seen on Facebook that they were at capacity and desperately trying to adopt out their adult cat population, so I went for a visit. Upon entering the colony room, a massive gray tabby hopped up on a cat tree to stand nearly eye to eye with me. He reached out his paw, flopped down, and in general made it known that he would like my attention. I was pretty sure I’d just found my new friend. Jeffery was his name, he was 18 months old (how was he so massive) and had lived in the cat colony his whole life. A week later I took him home, and dubbed him Augustus/Gus soon to be known as Augustus Gustav Gustuffson III. 

The internet had told me all kinds of weird things about introducing a new cat to a cat that was already established in the home, and it was because of this that I initially thought I had to keep Gus in a crate, for his own health and safety (I did mention that Seven was kind of mean right?). Seeing him and more importantly hearing him in that cage broke me. I hated it and I instantly thought I made a huge mistake and wanted to take him back. Seven was mad, Gus was mad, and I was losing my mind. Thank goodness my best friend Justin was back from his hiking trip, he came over with a bedroll in hand and put me to bed while taking Gus into my very large bathroom and setting up camp. The next morning I went to work and by the time I returned, Gus and Seven were both out in the house and no one was bleeding. It may have been the kindest thing anyone has ever done for me. Introductions over, and everyone in one piece, Gus and I’s life together began. 

It was only a few months after getting Gus that Seven left us, he was an old man, and in a lot of pain. It was time for him to go and I found myself in the same position I had been with him. A cat that was used to the company of other cats now alone. I knew I could not go through the introduction process with another cat, and Justin had moved to Boston, so Gus became an only cat. 

Gus came at a pivotal part of my life, it was a time of a lot of changes. I was living on my own for the first time in 8 years, as my best friend and roommate got married. The two cats I had had through my early 20s were both gone, (those dudes saw some things I tell ya). And I was settling into a new kind of life, a more stable quiet life that one finds themselves making as they are leaving their 20s and entering their 30s. It wasn’t he and I against the world like it had been with Otto and Seven, it was he and I making our own little world. 

It took Gus a long time to really warm up to me, but I was as patient as I could be. He didn’t like to be held, and wasn’t much for cuddling, but he would hang out nearby and occasionally ask for pets, and always asked for food. For the first year I had him Gus never purred, I actually thought that perhaps he couldn’t? Then one day while brushing him (how he loved to be brushed) he started to purr, and drool and make air biscuits. I could have cried, he was happy! He was happy and was showing that he was happy for the first time since I had brought him home. Sure, there were nights when I would wake up with him curled up next to me. Times when he would sit close for pets, but even in those moments he seemed more resigned than happy. This was a huge step. 

As time went on Gus became a bit of a velcro cat. Where I went he followed, if I was sick in bed, he stayed close, he would put his paws on my head (I think he was checking for fever), or curl up on my feet. He was a great nurse. When I left for any amount of time Gus would hold a grudge. He liked his babysitters fine, but he really only wanted to hang out with me. When people visited our house, he was not the most welcoming host, especially if those people were children. Gus really did not like children. If my mom came to visit Gus would pout to beat the band because almost every time she came it meant we would be going to St. Louis to my doctors for at least a couple days. He held that grudge until the bitter end. 

Gus was the silliest cat. He had so many expressions, and got himself into some weird predicaments. He wasn’t very skilled at jumping, so when I got him a 5 foot cat tree it took him about a month to figure out how to get himself up to the top. When he finally did it, he looked down on his kingdom with arrogant pride. I couldn’t bring myself to tell him that most cats would have had that thing conquered on day one. Gus loved a paper bag, catnip, and old toothbrushes. If I was sleeping too late, he learned how to step on the power button on my Cpap to wake me up. At night before bed he would sing me the song of his people while doing security checks around the apartment before finally coming in to sleep in my bed. 

His funniest habit, that eventually led to the accident that took his eye, was taking off like a sprinter after using his litter box. I always knew I needed to scoop because he would do a victory lap at speed around the apartment. It was during one of these victory laps that he was not expecting the hall closet door to be ajar and he ran full speed into the corner of it. He shook his head and stumbled around for a moment, but eventually he went back to normal. He was not normal however. Unbeknownst to me, in that moment he had detached his retina and over the next weeks and months that eye would swell and shrink, swell and shrink. His vet tried drops, and meds but nothing really helped until finally his eye gave up. I won’t go into details because it was SO gross, but I found myself in a position where he needed to have his eye removed and fast. 

The surgery he needed was going to cost over $2,000 dollars and I did not have that kind of money for cat eye surgery, but I also could not give up on him. Lucky for me Gus had developed quite the online following on his Instagram. I set up a GoFundMe and asked his followers for help. His surgery and recovery were fully funded in less than a day. The relief I felt was immense. 

It was now my turn to care for him, after so many times he cared for me when I was sick or recovering. He hung out with me for the months that I was stuck at home recovering from my heart surgery, and now he was completely reliant on me to care for him while he adjusted to life with one eye. 

I don’t have children, so I don’t know how it feels when one of them is sick or suffering but I had a cat, and the feeling of hopelessness was overwhelming. The first few days after his surgery I am pretty sure I only slept in 1-2 hour stretches. Gus was so drugged that he wasn’t in very good control of his body functions. While I lay down holding him wrapped up in a towel, I found myself soaking wet, as he couldn’t hold his bladder, nor realize he should go to his box. I was so afraid he would hurt himself while I slept, or pull out a stitch, (the dude would not wear a cone, he flopped around like a fish out of water howling and I didn’t have the strength to fight him). We made it through, and I knew we would be okay when I woke up one morning to find his bowl empty, his litterbox dirty, and him sitting in his cat tree watching the birds. 

Gus and I had a lot of adventures over the years, and there were great stretches of time where he would be my only companion. He was there with me through my Covid isolation, having his kibble delivered along with my groceries. We both stayed inside for a whole year, I don’t know if I would have made it through without him. 

He kept me company as my health deteriorated, and I found myself unable to go out and do the things I once had. No longer were my evenings spent outside taking photos, or with friends. I was becoming more and more isolated. 

Eventually, heart transplant started being talked about in my life, and then more than being talked about it was being considered and I was undergoing all of the prior tests for approval. Through all of this Gus kept me company, snuggled up and purring, providing comfort and company. Truly, one of the most heartbreaking things I learned as the transplant process proceeded was that there would be at least a period of time that he would not be able to live with me for my own safety and well being. I can’t lie and say there weren’t moments that I thought I would have to slam the brakes on the whole process because I could not imagine giving him to someone else, even temporarily. 

Gus knew me better than any person did, and I know there may be scoffs at that. He was my constant companion, and I told him everything. Even if he couldn’t tell anyone else, even if he didn’t speak my language, Gus knew it all, the good, bad and ugly. That is why I think he knew that I could not continue down the path of transplant if he was still a factor. Do I think he somehow planned and gave himself a stroke? No. I don’t think so, but do I know that the timing was such that saying goodbye to him was going to make it easier for me to do whatever came next for my health? Yes. Choosing to let Gus go was the hardest decision of my life. There are still days where I wonder if I did the right thing, or if I would have just given him a little longer he would have regained control of his body and it’s functions. That is just the grief talking. I know he couldn’t stay. It was the first big decision I would have to make in a long line of life changing decisions. Like so many times before Gus was showing me how to do the hard things. 

So that is it. My ode to a cat. He was more than a cat, and better than a human. I miss him every day, and I am so thankful that I had him for so long. I have thought about getting another cat, but it just doesn’t feel right. I feel like Gus took his bow to give me the freedom to do what I needed to do for my health, transplant or reconditioning. I don’t know if I could have been as dedicated to cardiac rehab, and all my lifestyle changes if I had a warm snuggly cat to hang out with instead. Here’s to Augustus Gustav Gustafson III, may his memory be a blessing. 

Me vs. Myself

Leave a comment

“Man vs. Self: a literary term that describes a character’s internal conflict, or the psychological battle they face within their own mind.” 

Yup, that’s me, stuck in a literary conflict in the real world. I bet you’re wondering how I got here, all tied up in knots and battling nothing but myself. Allow me to take you back dear reader, to one month ago. I was super stoked to show off my weight loss and health progress to my transplant doctor. He was super stoked at how awesome I am doing. I rode that high for a couple of weeks. Then the undercurrent of that appointment started to nag at me a bit. 

You see, during that appointment we talked about how awesome I am doing. We also discussed how much better I am feeling. We decided together to get some data to back up all of my hard-won progress. This dear reader, is when I kind-of-sort-of allowed my brain to turtle out of the conversation. I had heard what I wanted to hear. There was no need to listen to anything else or absorb it. Right then, into my metaphorical shell I went. 

There is nothing wrong with data, I personally love data. It’s hard to argue with data. Data shows me that what I am feelings is real. I haven’t just convinced myself and others that I’m fine. But am I fine? That is where the test comes into play, and that is why in that moment, into my shell I went. 

One month from today I will repeat the dreaded VO2 max test. I will put on the scuba mask and hop on a stationary bike. I hope to prove to my doctor and myself that I have succeeded. That I have done what they told me I couldn’t. I exercised my way out of needing a transplant. 

My VO2 max has been around 12 for about 3 years. According to my transplant doctor, this is the lowest they like to let people get before listing them. My team first started gathering this data with transplant in mind in 2021. During that year, I did poorly. We called it a scratch because I had just spent the last year inside my house and was “de-conditioned”. In 2022, I did the test again. Once again, I stunk up the room. It was at this appointment we called 12 my baseline and started talking about transplant. 2023, rolled around and the test was kind of the put up or shut up test. If I did not do any better than 2022, then I probably wasn’t just de-conditioned in 2021 but instead have advanced heart failure and we needed to start talking seriously about transplant. Can you guess how I did in 2023? That is right friends. I actually did the worst of the three tests so far. Things were not looking so hot for our hero. That kicked off transplant testing. As we all know from following this story so closely and never forgetting anything, the first time my case was presented to the transplant board, I was denied. In general I was still too healthy to list. This was actually good news. Eight months later, I struggled to work a full day. I was sick pretty much all the time. My case was presented to the board again. Once again, I was denied. They largely considered me too large, my weight was a problem. They did not think I would be a good candidate. They also doubted I could get a good enough heart at that weight. (There is a whole size equation that comes in to play, I’ve explained it before, I can’t want to explain it again.)

It was after that major disappointment that I begged to try something, anything to feel better. The answers were, work fewer hours, and start cardiac rehab. Check and check. I have to admit I was dubious about these solutions. I had been told word for word “you can’t exercise your way out of this.” Looking back I can see this statement was really traumatic for me. In the moment it was just a bit of a gut punch but now, it rings in my head daily in the way that only the most terrible things can. 

So, in March of this year three months after being denied for listing, I started cardiac rehab, and wouldn’t you know it…I started getting stronger. I also started a weight loss program, with help from both calorie restriction and a weight loss drug. Here I am seven months later. I’m inching towards 40 pounds down and feeling better than I have in years. I’m still working out three times a week. My muscles are coming out of retirement. In 30 days time, I will repeat the test that has bested me for the last four years. 

Here’s the rub, and the sentence that caused me to turtle out in my mind at that appointment. If my test is better, that is awesome. It is proof that my hard work paid off. We can delay transplant. If the test is the same, or worse, we have to talk about transplant again. This time my weight isn’t going to exclude me. To be fair that was the goal of cardiac rehab and the weight loss medication. The goal was not to slim me down for vanity’s sake. It wasn’t to get me swole. It wasn’t so I could live happily ever after with no worries of transplant. The goal was to slim me down, get me healthy enough that I could crush a transplant and come out the other side. The goal was to put me in a position where the hearts that I would be offered, were hearts that could go the distance with me. Along the way I found myself leaning into a new goal, delaying transplant, and doing what they said I could not do, exercise my way out of heart failure.

So that’s where I am right now, that is the internal battle I am fighting. I know what the original goal was, but along the way I found a new one. I feel like I am going to crush the VO2 max. My stamina is better than it has been in a very long time. However, data and feelings are two different things. Data talks louder than words. There is a chance that my VO2 max is still 12. There is a chance that when those results come in, we will be once again, having a serious talk about transplant.

I can’t lie. I will be crushed if that is the case. I have worked so hard. Not improving would devastate me. I am “training” really hard at the moment, specifically for the test. My workout at the gym is mainly on the kind of bike I will be tested on. I have to say, it is kind of kicking my butt. I can’t go longer than eight minutes right now. My heart rate gets too high, so I have to pull back. I worry I have tricked myself. I might think I am doing better because I haven’t actually been challenging myself much. It is me against myself right now. I am using all of my therapy tools but sometimes we just have to feel our feelings good, bad, or ugly.

 I have a dream of hitting 20 for my VO2 max, if I hit 20 I have told myself I can get a new cat. I haven’t allowed myself to even think about a new pet since Gus. I knew that if the transplant went forward, it wouldn’t be fair for the animal. A VO2 max of 20 would give me an 8 point buffer between me and transplant. Hopefully, I would be able to maintain it and put off the transplant for at least another 10 years. My doctor also hopes for this outcome.

My reasonable goal for my VO2 max is 15. This goal tickles me for a number of reasons but the biggest one is, that is still lower than the “poor” portion of the VO2 max scale. It isn’t even near hitting “poor” in fact, I’d have to hit 25, to be considered in the “poor” category. Isn’t that funny? It is so true what they say about being grateful for what you have because what you have even if it is not much, could be someone else’s wildest dream. 

I know one thing for sure. No matter what happens with the test this time around, I can honestly say that I have left it all on the field. I have done everything asked of me over the last seven months. If the test isn’t good, there is nothing left to do. I have thrown all I have at avoiding transplant. I have done all I can to make myself stronger. I have actively participated in my care. I have committed to my overall health and wellness. If I don’t improve, it is because something far out of my hands is wrong and I have to accept the next steps. See, just typing all this out has helped, guess writing really is a good tool for me and my mental health. I am not hand writing, however it is still working, guess the ol’ therapist and I will have to agree to disagree on that one.

As always, thanks for hanging out in my brain for a while. I know there is a lot of junk in here, but I hope sharing it with you all leads to a bit of understanding, a bit of reflection, and maybe even some hope? I will update you in a month (unless I get the urge before). In the meantime, cross your fingers. Sprinkle pixie dust, do a naked moon dance, or even pray. Hope that whatever is meant to be on this journey of mine comes to be. I hope to find peace with whatever it is. Thanks. 

Vaguely Nauseated and Kicking Ass

Leave a comment

Next week, on September 18th, I will have been vaguely nauseated and kicking ass for six months. Vaguely nauseated? Yes. Zepbound, the weight loss, heart failure, diabetes prevention, fatty liver resolving, ADHD improving, OCD quieting medication I am on, is not all sunshine and weight loss. I spend about 3-4 days after my shot each week vaguely nauseous. Most of the time it is just a nagging unease in my stomach, but especially on weeks my dose is increased, it can make me so nauseated I become sick. It is absolutely still worth it, did you see all those things that studies are finding it improves? And I have all those things! 

This week I went to my transplant team in Omaha and saw my doctor for the first time in  six months. My last appointment was with his PA, so he has not had the pleasure of my company since the Zepbound and all of my efforts started. I say this with absolutely no irony, homeboy was darn near giddy with my improvement. My BMI has gone down significantly and is now within acceptability range for transplant. If you remember back to the end of December last year, I said this “If there is anything I have learned through this whole process it is that I shouldn’t bury the lede, so here it is, after being presented for a second time, my case for heart transplant remains on hold and I have not been listed…This is actually good news in its way, this means that I am stable and strong, and I can keep going without a transplant. Once again my weight plays a large factor in this decision, and I am again not angry about that, though I am a bit annoyed I didn’t have a shot at my new medication for a while before my case was presented.”

A more accurate representation of what that meant isn’t that I was stable and strong, it was that I was stable and too fat to get a heart that would be worth trading mine for.  It meant the heart I have currently is plenty strong if my choices of new hearts were going to be old and not particularly strong themselves. As much as blood type and antibodies come into play with transplant, so does size. If you are a 250 pound person you can only accept a heart within 10 pounds of your weight. If that weight is 250, the problem becomes anyone that is within that weight and not 6’2’ + is in the morbidly obese category themselves and not a great candidate to donate. If they are 6’2” or more the heart will likely be too big for my chest, even if it is a healthy heart. It is a whole Cinderella and the slipper situation. At the time I was relieved I was denied again, I truly want to keep this heart as long as I can, but I was also ticked off that I was not able to get the medication I needed to lose weight in time for it to affect the outcome of that particular transplant tribunal (everybody wants to win right, and nobody wants to be told they are chonky). 

Now, I have had that medication for 6 months. I have also been going to the gym three times a week for those 6 months, I have been watching every calorie going into my body for those 6 months, which means that I have lost the weight that was needed in order to be better qualified for transplant. To be ideal for transplant, I have another 50 pounds to go (this is not MY goal weight, if I get there great but I am not going to go nuts trying to achieve this weight, my goal is 20 more pounds). The thing is, I am feeling better. Apparently, people who eat right and exercise feel better? Seems fake, but okay. I have not cured my heart failure, but the blood test that indicates heart failure while not resolved is the lowest it has been in 5 years. Now my days don’t feel like punishment for living anymore – I was truly struggling before, and now while I am not the picture of health, I have a lot of my normal activity back. All of this to say I’ve unsheathed a double edged sword. 

In November I will have my VO2 Max test again. I have been below the cut off for transplant consideration in that test the last three times I have done it. An average person’s score is somewhere between 50-60. Mine is barely 13, and has been for some time. If I flunk again in November my doctor will now be able to put me forward for transplant and I will likely be approved. If that test doesn’t improve there will be no reason not to list me. 

Isn’t that good news?

It is. But it also isn’t…

I thought you wanted a new heart? I sure did.

And in ways I still do, but now that I understand the process more, I want that to be as far in the future as possible. My doctor said it in my last appointment, if I only want to be transplanted once in my life, then it would be great to wait as long as possible and be as healthy as possible in the meantime. If I am super honest I would love to ride into the sunset with the heart I came with but I also want to be around to see what kind of shenanigans my nephews get up to as adults, so it isn’t likely that this ticker is going out with the rest of me. I am not saying I should have stayed overweight to avoid transplant. I am saying, being overweight took it off the table. I am hoping that now I am healthier, I can put it near the back of the table, or over on the counter even. Anywhere not right in front of or on my plate. 

All of this comes down to that test I have in November. I don’t get to fail it again. I will pass or be put forward again. My goal is to get a 15, two points of buffer between me and that dreaded 13. My sky is the limit goal? 23. Ten glorious points away from the list. Proof that maybe I can exercise my way out of this after all or I can get nice and lean and otherwise healthy so my choices of hearts are better, and my recovery smoother. Until then, it is the gym for me. It is 1500 calories a day and 1800 on weekends. It is taking my meds and doing all I can to stay as healthy as I can. It is participating in my care so no one can say I didn’t try as hard as I could. Are you still with me? My cheerleaders have been my saving grace this whole time. Your support means so much to me, and motivates me to keep going. Thank you for being here. 

Until next time. 

Learning to Balance

Leave a comment
The last time I posted on here I was finishing my third week of cardiac rehab. And then, I kind of fell off the planet as far as updates go. There are a couple reasons for that but the big one was the end of the school year followed by intensely focusing on what I needed to do in rehab to change the way my life looked going forward. If you have someone in your life with ADHD you may be familiar with hyper-focus or hyper-fixation. I have never been great at aiming this specific superpower which means it isn’t often a super power but rather a super distraction.

Usually, for me, hyper-fixation looks like reading one book about a subject and then being compelled to read 12 more on the same subject in quick succession, and suddenly I am an expert on art theft and forgery. I don’t know if it is because cardiac rehab made me feel so much better, or that feeling so much better made me realize that I had to put in work to keep myself healthy, but I seem to have, for once in my life, directed my hyper-fixation in a helpful direction. For a while there, my diet and exercise were all encompassing. Not in a “perhaps you should see a therapist about that” kind of way, but more a “look ma, no hands” kind of way. I’d learned a new trick and I wanted to keep getting better at it, and show the world what I could do.

I fear that I am making it sound as though this has all been easy, my friends, it has not. I have faced many challenges on the way to where I am right now, and over the last 6 months. In the beginning of my rehab, I was plagued with pain and injuries. Knee pain and plantar fasciitis, so bad it felt like I had a knife in my shoe. I dealt with weeks of feeling very ill and having dangerously low blood pressure as my body got used to the Zepbound. More recently, I’ve gone through tremendous grief and sadness after the sudden and tragic passing of my dear cousin, whom I grew up with and love very much, followed by a bout of Covid which is still around and very real, just ask my lungs.

All of these things made keeping up with my diet and exercise a challenge. Some more than others, of course, there are things you can push through, and things that simply take you out. I have had to learn to roll with the adversity I am met with, and allow myself the time it takes to heal in whatever way that is before pushing forward. This has been super hard!

I tend to be an all or nothing human. I am either going to be the textbook example, the very best at something or I am not going to care about it at all. It has been scary to me to not be in the gym for the last two weeks because of going back to work, grief, travel, and illness, but life happens and I have had to control the only thing I can right now which is my diet. I have not let sadness or sickness lead to a free for all where food is concerned, though it has taken immense discipline. I have still tracked every single calorie, every single day, and yes, there were days when I zoomed right past my allotted calories for the day, but each root beer float, and cookie was calculated. Six months ago that would have been permission to keep going in that direction, after all I had already “messed up” why keep trying now? “You had one cookie? Why not have a dozen…” It has been hard but I have had to change that thinking to, “Of course I went over my calories, things are crazy right now, and that is okay, I’ll do better tomorrow.” I still hate not being “perfect” but I know if I don’t give myself a break eventually, I will have a breakdown, and that really isn’t what I am after.

So here I am, 6 weeks out of my 16 weeks of cardiac rehab, one week post covid, approaching 3 weeks without going to the gym and I am still 25 pounds lighter. I have muscles that are starting to pop out of places I honestly didn’t know we had muscles, my labs are excellent, and the biggest metric of all I am feeling really good. I am back at work and can make it through the day without feeling like I am going to drop when I get home. I am still watching my calories and learning that no food is “bad” but there are trade offs when you are counting calories. You can have a scoop of ice cream here and there, but perhaps a single scoop and not an entire pint. You can give the sweet tooth a reward without punishing the rest of your body. Apparently balance really is a thing and the middle of the road isn’t that bad. Though I will say, a child called my lunch a “Great Depression Lunch” today because he thought my hard boiled eggs and apple sauce was sad. He didn’t know that it is Friday and I treat myself to pizza on Friday nights, which means I have to be a little more strict the rest of the day. It was a good joke though.

Monday, I will start slowly back to the gym and see how my body and lungs perform. I am prepared to start slow if I need to, 15 minutes is better than zero minutes, and I can build my way to 45 again. I used to think participating in my own health and care just meant taking my meds on time, avoiding the obvious things like salt and saturated fat. Those things are important, but there is so much more that I wrote off, I was sure it wouldn’t be helpful to me, my health was past the point it might improve if I tried. I see how wrong I was now, and I am hopeful that my health is far from peaking. I am hopeful that there is much more good to come.