Category: Uncategorized

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.

Rehab Week 3

1 Comment

As my third full week of cardiac rehab is coming to a close, I wanted to take a moment to reflect on my experience in that time. There are changes happening for sure, but not all of them are ones that I expected. When I started rehab, I expected to get stronger, increase my stamina, and maybe (hopefully) lose some weight. I didn’t expect my mental health to improve, my family to join me in my quest for better health, or if I am honest, to be very successful. I was hopeful when I started rehab but it felt similar to hoping there would be a pony under the Christmas tree. I might have really wanted it, but I doubted I would really get it. I am so glad to have been wrong. 

A big part of cardiac rehab, and a part that I was pretty sure I was going to stink at, was getting my diet under control. There are a few things where diet is concerned that I am excellent at, for example, I am really, really good at watching my sodium intake. It is a rare day that I go over my allotted 2000mg and if I do it isn’t by much. Edema fears my sodium tracking skills. What I am not (or wasn’t) good at, is tracking calories, fat, carbs, anything delicious. My thought has always been a bitter one, “If I have to give up salt, I am not giving up anything else.” and I would add unsalted butter, and eat sugary snacks with reckless abandon. I knew when I signed up for rehab that this attitude would have to change, if I was going to give this opportunity the best chance to make me feel better it couldn’t just be three days of exercise a week. Which is why, 25 days ago I started using an app called Lost It! I feel like they should start paying me because I sing its praises to anyone who will listen. I have religiously recorded every food that passes my lips, and I am happy to report that out of 25 days, my calories have been under budget every single day!

Reasons I love the Lose It! App:

  • Losing weight is gamified in a way I personally enjoy, for example each day I log all my meals, it contributes to my streak. I currently have a streak of 25 days and I will be really sad if I mess up my streak before day 100. 
  • You can buy a subscription for life. Instead of paying $50 bucks a year, you can pay $120 bucks and have the app for life. When you are making a lifestyle change, this option helps solidify that decision. I am not just doing this for the year I am subscribed, this is forever. Perhaps it is just the way my brain works but that distinction makes a difference. 
  • They have a TON of verified food options, be it fast food or products. Verification means the nutrition information that they have comes straight from the horse’s mouth. 
  • I am constantly earning little rewards or encouragement. It tells me when they see a healthy pattern such as, I have lower calories for the day when I eat eggs for breakfast. It also tells me how much weight I have lost as compared to household objects (I have lost a desk lamp or 5 pounds) and of course keeps track of my logging streak. 
  • My sister is using the same app and we can share our progress, recipes etc. 

Speaking of my sister, talk about something unexpected that has come from rehab! I am incredibly lucky and thankful to have my big sister join me both in eating better and adding exercise to her routine. It is awesome to go on this quest for wellness (I am sorry I really hate calling it a journey, a journey makes it sound like I am going on a nice trip. A quest, I think, leaves room for overcoming challenges and doing hard things.) together. We check-in, motivate and complain to each other. It has been nice to not feel like I am the only one going through this shift in the way I live my day to day.  It is not my place to talk about her business on the internet but it is pretty safe to say that most people could benefit from a shift to a healthier lifestyle. It is very motivating to know that we are in this together and that she wants to be healthy enough to hang out with me (and her kids I guess)  for a long time after I get a new heart. 

Another thing I didn’t expect but am greatly enjoying is a newfound sense of determination. I think sometimes when living a life that has a lot of limits, those limits start to encroach on parts of your life where you aren’t truly limited. I think there comes a point that you are so used to limits that you impose them in places that they don’t naturally exist. Feeling my edges so to speak has really given me confidence to push myself a bit harder in places that I hadn’t been. Instead of being a lump when I get home, I can spend 20 minutes cleaning the kitchen, or the evening doing laundry. My days don’t HAVE TO end at 3 p.m. I find myself waking up in the morning feeling energized and excited to get to rehab or my solo home workout. I think the best way to describe it is, it feels a little like I am sticking my tongue out and blowing a raspberry in the air, and saying “You can’t catch me!” to my own heart failure. I also think there isn’t a small part of me that is annoyed that I have thus far been unable to get the weight loss medication I have been prescribed due to shortages and misunderstandings. I feel a bit like Thanos saying “Fine, I’ll do it myself” to the system that is keeping me from receiving that particular weight loss jump start. 

Perhaps it is because of the new determination, paired with the feeling of safety that rehab offers that I feel that my efforts at the gym and in my diet have been successful. I am a person who regularly starts and stops this kind of quest. When the going gets tough, I get going…home. Go big or go home? Awesome, I’m headed home. I think I have reached the perfect blend of spite, safety, and determination to be successful. My workouts have quickly increased in length and effort over the last 3 weeks, I am going farther, longer, and faster each day. I feel stronger, physically and mentally. I am exhausted, but because of effort not because my heart is sluggish and my mood is poor. 

I am excited that I have 11 more weeks to keep getting stronger, and learning more about what I really can do. Hopefully in that time my muscles will figure out that this isn’t going to stop happening, and will calm down about how hard I am working them. In fact, the muscle aches are pretty much the only thing I can say that is negative about any of this. Does anyone have any hot tips about muscle recovery? My arms and legs are noodles for the whole night after a hard workout. Is that just what happens when you work out hard? Am I doing something wrong?  Do I just need a massage? Are my arms and legs secretly noodles and it is only apparent when I try to work out with them? Any help is appreciated. Thanks as always for cheering me on. You guys are awesome and it is really nice to hear from you all, and have your support. In addition to everything else, it is very impactful to know that I have such an awesome cheering section.

Rehab Day 1

Leave a comment

They tried to make me go to rehab and I said, “Hell yes! Finally.” Not exactly as catchy as Amy Winehouse but sometimes the truth isn’t catchy. Today, I completed intake for 36 sessions, 14 weeks, of cardiac rehab and I could not be more thrilled. Over the last few months I have tried working out on my own only to run up against the same issue, time and time again. I just get scared. I know to you heart-healthy people that is an odd issue to have, but there comes a point where I don’t know if I am pushing myself or pushing my luck. When that happens I find myself giving up, too scared to keep going. That is why when I saw my doctor last month I asked if I could do more cardiac rehab, and he approved. I knew I would be rolling the dice with insurance whether they would approve it for me or not, and was prepared to only have 6 sessions if they did. Getting 36? A full course? I am so excited. It feels like I finally won a battle after a long, long losing streak. 

There are so many benefits of cardiac rehab for me that go beyond just the customized workout. For one thing, the scheduled appointments assure I will actually attend. It is far too easy for my brain to talk me out of going to the gym, there is no accountability, and I can justify just about any reason to skip. Conversely, I don’t miss appointments, I am the person who is early to everything. The structure of these sessions will be great for my ADHD brain. They will also give me a safe place to feel for my edges, to learn better what my body feels like when I am entering the danger zone, and when I am just pushing. Learning this will hopefully help me when working out on my own, to have the confidence to continue. 

Things I love about cardiac rehab: 

  1. Old men exercising in jeans. I would say 90% of the people in cardiac rehab are men over the age of 60 (heart attacks likely), and of those men 90% wear jeans to work out. It cracks me up. 
  1. I am a unicorn to them. These nurses are used to working with the aforementioned old men in jeans with acquired heart disease and a tendency to push back about all the lifestyle changes they are being asked to make. Not me, this has been my life for 41 years. They aren’t asking anything of me that hasn’t been asked before. Plus, both this time and last the nurses remarked about enjoying learning about my heart, and seemed very amused by me in general. I love being amusing, and I am happy to provide a little break from the old dudes. 
  1. Sonic ice! I love it. Who doesn’t love Sonic ice, that they can access for free? 
  1. Constant feedback on my heart while working out. Blood pressures, BPM, pulse ox, they check it all, and tailor my work out to what my body tells them. 
  1. Help from an honest to goodness nutritionist on tailoring my diet to better serve me. I do a good job with this but guidance and feedback are so nice. 
  1. This is a medication free way of regaining some of my lost heart function and I am all for anything that doesn’t require another pill. 

I start my first real workout tomorrow and am so excited to begin. If you see me, please ask me how it is going, or shoot me a message. I need all the encouragement I can get, exercise has long been something I feared and gave up easily on. The more positive reinforcement I can get the better!  In fact, one of my questions on my intake paperwork today was about my support system. It wanted to know if I had anyone I could call if I needed support. I didn’t have to think about that question at all, and marked that I had MANY people who I could call if I needed. I truly believe that has always been my magic feather so to speak, and lets me keep flying. Thank you for that. 

Chasing the Carrot

Leave a comment

I kind of lost it today. It has been a long, arduous month and I guess I only had exactly 31 days of patience in me. The beginning of the year is always a fun time for me (really any of your chronically ill friends, check on us, we are not okay). What is super fun about it is that, when insurance deductibles start over nothing is automatic. If you aren’t paying close attention there is a good chance things you’ve had on auto-pilot for the last 11 months have just completely broken. No warnings are given, if you are not proactive, you will not find out until you don’t have the medication you need, and trying to fix it from that point is like a clueless politician trying to help after a hurricane, paper towels are nice but my house is a fish tank.  

I have about six medications that have co-pay coupons, all of which have to be individually reapplied to their respective medications taking the co-pays down from $300-$600 (on $1200-$8000 meds) to $10, if you are thinking to yourself, that’s not right, you are correct and perhaps you’d like to vote for people in favor of Universal Healthcare. Somehow, each year no one knows how to get at least one of these coupons applied, this year it was two. In addition to that, one medication needed a prior authorization, and another a physician approval for refill. All told I have probably been on the phone with my pharmacy for three, maybe four hours in the last two weeks conservatively. 

Yesterday, I spent an hour on the phone with my insurance. All for a medication that I only knew was in danger of not being delivered because I looked, not because I was warned by anyone, or any system. The pharmacy has already sent my med packets without it. I have been working on this for TWO WEEKS and I missed the cutoff to have it included in my shipment. Now I am in danger of not having it suddenly for the first time in 5 years (I run out officially in 6 days). The things it says can happen if you stop taking it suddenly, are not great. Which may explain the franticness of my calls. After back and forth with the pharmacy, with my doctor, and with my insurance (for over an hour remember) today I was told this medication not only was denied, but not eligible for appeal or exception. I spent an hour talking to an insurance representative yesterday! She went through my policy with a fine tooth comb, and she told me, all I needed was the pre-authorization from my doctor. My doctor sends it, and within an hour it is denied. You can’t tell me that the representative didn’t know that this medication was going to be denied based on the new formulary my insurance has. I don’t blame her for my formulary, I don’t blame her for the fact this isn’t covered, that is above her pay grade. I am mad that there is no way she did not see after looking through all the things that we looked through yesterday the REASON this medication was suddenly being denied even though I had a current pre authorization on file and instead of telling me that it was denied, she said to ask for a new pre-authorization.   

This medication has been keeping my head from exploding off my body for the last 5 years, but I guess now I get to either have completely debilitating migraines again (as opposed to the only mostly debilitating ones I have now) or try a different form of the medication that my doctor already was pretty sure would not work for what I needed it to do. I am SO limited on the kinds of medications I can take, and this is just devastating. I hate that people who aren’t doctors can decide what I am allowed to have. I can’t even get it without the insurance because it is too expensive. I have a $10 co-pay card but those only work if the medication goes through insurance first. If I wanted to pay for this medication out of pocket it would be somewhere in the neighborhood of $8000 a month. Yes really. Again, the system is super broken and perhaps we could vote in ways that make this less easy for the medical complex to do? 

That is just one medication. I still have one medication that had its coupon applied and disaster averted in time for my monthly shipment. Yay! But, I know not to get too excited because the likelihood that it will apply automatically next month without me calling and having it applied manually is about 1000 to 1. The final medication has been refilled by my doctor but the pharmacy seems to think that it was canceled by him. I. GIVE. UP.  I am going to give them a week to figure this out, I am not in danger of not having it until my March shipment. I am hoping that somehow this problem works itself out but I foresee another half hour on the phone getting it fixed. It would be easy to blame the pharmacy, but this has been an issue at almost every pharmacy I have used. 

In addition to all of this, I have been prescribed Wegovy to help me lose weight in preparation for transplant. Do you think the pharmacy can get its hands on any? Do you think my insurance will cover any other type for any reason other than being diabetic? Sure won’t. Am I a literal tenth of a point from being diabetic and kind of hoping my pancreas craps out so I have a chance at getting this medication so I can get a heart? Disgustingly, yes. That is what it has come to, it would be beneficial to me to be diabetic. Insurance does not want to help us prevent things, it wants to help us march ever closer to the grave and play chicken with our plot. 

In the midst of all of this I am feeling pretty gross. Truly not well, mentally, nor physically. I am not super certain why but I have a feeling heart failure is a big part of it. On top of that it feels like I am doing everything I can to put off transplant, get the medication and services I need, literally fight people for what I need to live and every time I get close, the carrot is moved just a little further away. Guys, I am starting to think you can’t get the carrot. It’s really hard to stay motivated to “get better” when it is already so hard. Don’t admit that though, you don’t want anyone to think you don’t WANT a transplant or don’t WANT to get better. Don’t let anyone think you might not be compliant. I want it more than anything, I spend all my time TRYING to comply, but the bureaucracy is crushing, the roadblocks are everywhere, and I just want the damn carrot already. 

Still stable, still strong. Not yet.

Leave a comment

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. I am happy with this decision. I find I am only unhappy in the absence of a decision,  floating out in purgatory not knowing what comes next. 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. 

About a month ago I was put into a program sponsored by the hospital and the heart failure clinic to get Wegovy at no cost to me because my insurance will not pay for any of the weight loss medications. There are good indications that this medication can help significantly with chronic heart failure but as of yet this would be an “off label” use for the drug, thus the program through the heart failure clinic that is very interested in its potential to help its patients, prolong lives of those waiting for transplants, and possibly eliminated the need all together. (Let’s not dream too big just yet.) All of this is great, however if you have read anything about these medications, especially this one, they are in short supply and I HAVE to get this medication, and it HAS to be through their pharmacy. They have not had any of the lower doses since September. I have been chilling at number 87 on a waiting list for when they get the medication in, however along with today’s news they also were able to bump me up to first priority on the list. 

Hopefully, I will be able to start this new medication soon and it can help jumpstart the weight loss I have been unable to achieve on my own with my limited capacity to exercise. Best case scenario is I lose weight and feel so much better that I can go back to work full time, and I feel better than I do now, well enough to perhaps push the transplant talk back another year, 18 months or two. I am hopeful but not naive, I will control the things I can, my diet and exercise and try to let go of what I can’t, when/if I get the Wegovy. 

It has always been hard to explain this place I am in. My heart functions at about half the capabilities of a sedentary adult, and about a third the capability of a fit adult. On paper it is REALLY bad. In my day to day it isn’t great but it has been such a slow decline over the last 41 years that it isn’t shocking, super scary and sometimes it isn’t even THAT different that what I have known my whole life. It isn’t like I woke up one day and was suddenly unable to go up and down the stairs without feeling faint, that has almost always been the case, it is just more frequent and with fewer stairs now. When people suggest things to do, I used to be able to decide I wanted to do it and power through even though it would mean I would be tired and weak the few days after, now I just have to say no because they are not feasible for me to push through. Most days, I am very tired but I am okay. I live a low key life and sometimes do things I know will cost me, just to prove to myself I still can.

Today in therapy, I was telling my therapist that I think my current point of growth is going to have to be accepting where I am, but like, actually doing it. I know I am at a limited capacity, but I don’t like being the one who has to change a plan or cancel, etc. I have never liked calling myself disabled but more and more that is how my doctors refer to my condition and how I experience life. It is time to start taking the help that is available to me and perhaps ease some of the challenges I face day to day. Apparently I don’t have to just be stubborn and figure out how to do everything myself? Seems fake but I guess I’ll try it. It may be time I start renting mobility aids when the situation calls for it (Omaha Zoo I’m looking at you)  so I can enjoy myself AND still function the next day. Perhaps, I let go of my compulsive need to do my own grocery shopping and let it be delivered 2020 style again. Maybe, just maybe I don’t say “I’m good.” every time a friend asks if I need help with anything, when in reality I just thought of five things I am trying to figure out how to do on my own but know I will struggle with. Anyway, this is all a long winded way of saying I am stable and I am strong, and I will keep doing my part to stay that way, and if that changes, the plan will change too, and I promise, I will tell you.