In order to fall off of a wagon, you have to be on it for at least a little while. I call that a win. From June to the end of July I did great. I watched my diet, I worked out, I did all the things, and then…the real world came back, summer ended and school started. Sometimes I feel like a juggler, and I can only handle so many balls in the air at once before I start dropping them. 

Each day, if I did everything I was supposed to do, and did it perfectly, I would:

• Wake up at 5:30 a.m. in order to work out
• Shower
• Exercise 45 minutes 5 days a week 
• Get ready for work
• Work 7 hours 
• Consume  less than 1800 mg of salt 
• Consume less  than 64 oz of fluid 
• Consume less than 1500 calories 
• No dairy (lactose) 
• Consume foods high in  protein and iron 
• Have a healthy breakfast (less than 300 calories, and 200 mg of sodium)
• Protein shake lunch (200 calories) 
• Cook dinner (less than 1000 calories, and 1200mg salt)
• Tidy my house 
• Sleep by 9 pm

The problem is, many days I hit my first wall the moment I wake up. I always say if a healthy person woke up one morning and felt the way I do on a “good” morning they would likely consider calling in to work, much less on a bad day. The mental gymnastics, I have to perform in order to get myself out of bed some days could rival Simone Biles for the gold. Before you ask, yes, showering is on the list. I would like you to think about how aerobic showering actually is, if you are truly cleaning yourself and not just having an existential crisis under running water (been there, do that sometimes). It is a lot of up, and down, reach and lunge, all while maintaining balance and under hot water, ask your other chronically ill or mentally ill friends how hard showering is, and they will back me up.  

The rest of this stuff isn’t so much hard as it is time-consuming and mentally draining. I get tired of thinking about every single thing I consume and how it figures into my restrictions. The amount of time it takes to plan meals, make grocery lists, shop, read labels, and prepare meals (most often from scratch) is a lot when you’re already tired from just existing. 

Anyway, the point is I was actually doing okay when 7 hours of work wasn’t in the mix. I could reliably get 20-45 minutes of exercise each day depending on the day. I had the time to leisurely plan my meals, and cook them, I was able to sleep as much as I needed at night and during the day. I was making progress, and then…summer ended. 

I knew when summer ended that it would be a bad idea for everyone involved to try and do it all right from the start. Trying to do it all and failing would be a hit I couldn’t withstand and perhaps physically would have a hard time recovering from.  I just needed to get through my work days at first, and then hopefully I would be able to add in the exercise. I planned menus in advance, I froze meals, I prepared and within three weeks I was exhausted. I haven’t been sure how I am even going to just do what I am doing much less add more, especially exercise, I get home from work and am exhausted. My legs are swollen, even with my compression socks, and all I really want is to lie down and read.  

It is like I had been juggling tennis balls and suddenly a bowling ball was added to the mix. Needless to say, I started dropping balls, the first ball I dropped was working out. It had to go, it morphed into a hard to juggle football and I just could not do it, and keep the bowling ball going. The problem with that is, that I have a problem with all-or-nothing thinking. It is well documented and something I have spent countless hours working on in therapy but patterns are going to pattern when times get hard and ta-da! I can’t do it perfectly anymore? I already dropped one ball? To heck with the rest of these balls, this is too hard. I am just going to toss this bowling ball around and I’ll pick up another ball here and there. 

That folks, is how I ended up here, looking for my wagon. I know I need to get back on the thing. I have to do what is in my power to do, and I have to will myself through the things that are hard. Man is it easy to get mad, complain, and compare. It isn’t fair that I have to spend double on groceries so they don’t make me sick. It isn’t fair that for me following these specific rules is a matter of overall health daily for me. It isn’t fair when the people close to me, really want me to do these things, yet do not do them themselves because they know it sucks! I think that is one of the hardest things, is it feels very othering to be the only one doing these things. Encouragement is great, but I don’t need a cheerleader, I feel like I need a teammate. There comes a point with cheerleading that it starts to feel patronizing to me, a very do as I say, not as I do kind of situation and I just shut down, (also a thing I am working on in therapy). 

In one month I head back to Nebraska to meet with the heart failure team. I will fess up to my shortfalls, and likely schedule a heart catheterization. I was told that if it felt like I couldn’t both work and work out, a heart cath would be likely, I will tell you, I don’t feel like I can do both. It could be a sign my heart failure is advancing, it could just be a sign that this is going to be a challenge where I am. Either way, I need to do better with my eating and take the extra steps where I can. Sometimes I feel like I am always recommitting myself to this journey, but it is a hard path and there are lots of paths nearby that look more enticing, have fewer obstacles, and are more enticing. This is my path though…steady-on. 

When my therapist first suggested the idea of group therapy for me, I was skeptical to say the least. I had a hard enough time in my own company, with my own issues, I wasn’t sure how I was going to enjoy or interact with others and theirs. Much like with the other aspects of trauma recovery I have been through I rolled my eyes, but agreed to try. Skeptical resignation is my thing, my therapist understands, she is less concerned about how I start and more concerned about where I finish. I came to her office because I was ready to try someone elses ideas of how to cope, that didn’t mean I was going to do so with a smile on my face and a spring in my step. Old habits die hard. 

It has now been two years since I started group. Last week, I attended my last meeting. Over the last two years I went from group therapy skeptic to true believer. Much like a summer camp full of people with hearts like mine, a room full of people who were all on the same path of healing – even if the place of origin and destinations were different, created a space for rapid healing and leaps that I am not sure could have happened in a one-on-one. 

As our therapist began our last meeting with a short catch-up something struck me, it seemed that all of us, even our leader, had spent the last few weeks decluttering, down-sizing, donating, and throwing out things that we no longer wanted or needed. Turns out that along with letting go of the habits, behaviors, people and relationships that no longer served us, we were doing the same with tangible things. There had been no homework to do so, no prior plan for this to be a group cleanse. It seems that the connection between feeling stuck and having stuff is real and as we were all becoming unstuck, the stuff was also falling away. 

For me the impetus for purging came down to one word. Ease. There has been a trend over the last few years to choose a word that you want to describe the upcoming year. A goal of sorts, a resolution in a way, a word to work towards and make a reality in your life. While I am not one to follow the pack, it became apparent in the latter part of 2022 and the beginning of 2023 that my word is ease. I didn’t even really pick it. It picked me. At the intersection of healing and progress was one desire, ease. I am tired of fighting against myself and against my life. My therapist loves to remind me that “what you resist persists” and through years of progress I grudgingly (I didn’t say ease came natural) can admit that tends to be the case. 

As I prepare to move forward down the road of transplant I don’t want to be or create my own obstacles. In my summation, the more ready I become now, the better off I will be when the time comes. The last thing I want is to get the call and go for the biggest moment of my life, and have more layers of stress because the state of my apartment, or the amount of absolute junk and nonsense I am leaving for other people to handle while I recover. Ease now, is an investment in peace of mind then.

Sometimes, even with the best doctors, and the best teams things go sideways. As far as I can tell the reason for this? We are all humans, and as my nephew once said when he was three or four “We are just made of meat.” Sometimes the truest words come out of the mouths of children. At the end of the day, we are all just sentient meat sacks doing the best we can. The hard part, when you are dealing with matters like your health and life, is deciding how human you are willing to let the people charged with taking care of your needs be. The even harder part for me is not letting a bad day make me lose trust in the process irrevocably. 

Over the last few weeks, the subject of my upcoming appointment with my ACHD (adult congenital heart disease) doc has been ever-present. Due to my struggles with PTSD related to medical situations, I spend copious amounts of time with my therapist preparing for appointments. I do my best to work through any feelings I may have leading up to the appointment, any apprehension, doubts, worries, fears, or frustrations. We work together to get to the bottom of what I am feeling and try our best to prevent problems before they arise. The enemy of anxiety is preparation. 

The biggest hiccup for this appointment? I would be going alone. This was by my own design, I had many offers for the company of my family. All they need is a little forewarning and planning and any one of them could have been present, but I was certain I wanted to do this alone. I had things I wanted to discuss one on one with my doctor and now that the hard part of hearing out the transplant doctor was over, I felt like I could manage a measly ACHD appointment with ease. More than that, there was a not insignificant part of myself that needed to know I COULD do this on my own, that I wasn’t so stunned by recent revelations that all the progress I had made in becoming a mature, informed, self-advocate who could stay present, even in the face of troubling news hadn’t been undone. I was bound and determined that this visit would be just me and I was excited about it. 

My plan was pretty simple. I had a few mundane things to talk about in reference to making myself feel better in the short term. Additionally, I wanted to have a frank discussion about where I stood as far as transplant was concerned. I expected to tell him how I have spent the three months since I was, in many ways, blindsided by his revelation that it was time to start the discussion about transplant and had been preparing myself mentally for the prospect. I wanted to let him know how far I had come in that process and how confident I felt that this is the right path at the right time, and I am in the right state of mind. I was going to discuss how I was feeling tired of trying one more thing that likely would not work, how I have been bone tired all the time, and that I have not been able to do the things I was able to do even a year ago, and how the simplest things like laundry have the ability to wear me out. Lastly, I wanted to have what to me was the hardest part of the conversation, a discussion about what kind of outcomes he had seen in those with anatomy like mine, post-transplant. All this and I was ready to do it all myself, as a grown, capable adult human. 

My plan went sideways almost instantly. When meeting with the fellow before I saw my doctor, I could tell that he was having a hard day. The man who has always come into my appointments well put together and with a pep in his step was disheveled, obviously tired and stressed, with the messed up mane of a man who had been gripping his hair in frustration. As I answered his questions, he seemed unaffected, and even uninterested. I felt myself starting to drift from confident to triggered. There have been many times in my life where I have felt, justified or not, that doctor’s interest is dependent on the emergent severity of my symptoms. So it was pretty triggering to feel as though my mundane complaints were not interesting to a member of the same team that had told me that in situations like mine decline and decision to list a patient isn’t usually emergent or extremely symptomatic, rather it is a slow decline in quality of life and abilities. I did my best to stay present. I decided to swing at the low-hanging fruit, wondering out loud if once again tackling my iron deficiency was worth a shot for short-term energy. I was concerned about some chest pains I had been experiencing, “likely musculoskeletal” was the answer I received with no follow-up. I expected that as it often is, I have a condition similar to arthritis that affects my chest wall. Finally, I told him that I wanted to talk to my doctor about my decreased endurance and tolerance for exertion, and how even with the new med, it was not improving. 

When my doctor entered the room he was as kind as usual, though he did seem tired. I don’t know where these two men had been before they were in this room with me but I had the distinct feeling wherever it was, they had been there a long, stressful time. The appointment started as expected, my doctor asked how I had been. I once again explained how I was feeling tired and while the new medication my other doctor had started did seem to help a bit, it was not life-changing. I expressed how I had made some changes to my diet as well in an effort to lose weight and restrict my sodium even more, but I was still feeling as though I was ready to start moving in the direction of heart transplant testing. It was here where things began to go sideways.

At my previous appointment my doctor made it abundantly clear that I could not diet or exercise my way out of the heart failure I was faced with, go back to the blog entry, I talked about it there too. Of course, those things were important as always, but they were not going to “fix” the issue at hand, nor was the issue my fault because I was overweight and out of shape. This conversation was immensely appreciated because as much as I might know that deep down, it is a hard thing to remember when you feel like perhaps your heart is fine and the only issue here is being completely out of shape. Today, when addressing my tiredness he went right to my excess weight and the need to change my diet. Did he not hear what I had just said about eating tasteless, high protein overnight oatmeal for breakfast every day, and changing from lunches of leftovers or at worst vending machine food to a vegan, plant protein shake? Did he not remember telling me to do what I could, when I could? I was telling him that at the end of my day of work where I usually walk almost 3 miles, I had nothing more in the tank. I could barely make myself dinner before crawling into bed and trying again the next day, much less taking a walk or jumping on my bike. I felt like I was spinning out, and that despite my efforts I had failed. At that moment my PTSD brain started reaching for survival mechanisms. 

He went on to address my question about the potential of moving forward with testing for transplant. I wish, dear reader, that I could tell you what was said here. I wish that more than anything, however, my amygdala finally overpowered me. That lizard part of my brain completely shut off any part of my brain that could absorb information. The lizard was off the leash and I was out of the driver’s seat, and by the time I caught the lizard’s tail and clawed my way into the passenger seat, the conversation was all but over and the parts that I could recollect were not at all what I was expecting. Under better circumstances, I would have asked questions, gotten clarification, asked what had changed, and why his opinion was different from that of my other doctor. I would have done a lot of things differently if but at this point I had been triggered so badly that I was unable to recover. I had dissociated so completely I felt foolish, small, and incompetent, I didn’t want to make it worse by asking questions that were born out of fear, and convoluted by a stressed-out brain. 

Sitting in my car I messaged my family and informed them of what had happened. I felt like I had failed myself, that all my work was for nothing, and that as much as I tried I may never be able to mentally handle the twists and turns of this process. Over the next 24 hours, I spiraled in almost every way I had to spiral. I won’t get into all the lies that my brain told me, but there were many and some of them were quite creative. I knew I was out of reach of my tools, I wanted to feel better and I knew I could, so I reached out. I reached out to my family, I reached out to my therapist, and I talked about what happened and how I was feeling. Once I was more clear on why I was feeling how I was feeling, I could use my tools to cope with what had happened and why it was affecting me so greatly. And after processing, I was able to write a group of follow-up questions to send to my doctor for a second chance to better communicate with each other. 

In the end, there are a few things that are true about this appointment. The appointment didn’t go as I had planned. My doctors, as humans, were very likely in the middle of an off day, or a tough situation. While this shouldn’t have been an issue in my appointment, humans are going to humans and it ended up that way. Additionally, I learned a big lesson, this process is enormous and taxing, it is emotional and it is going to be triggering from time to time, it will be in my best interest to not attend appointments alone for this reason. This fact isn’t a comment on my character, it is just a fact about the situation. Finally, when a human having an off day, meets a human who is stretching her emotional limits, there will likely be misunderstandings and friction. One less-than-stellar appointment isn’t going to change the way I proceed. I still feel more comfortable here, with these doctors than I have felt with other doctors in the recent past. I believe that I am in the right place, to get the care I need, whatever that involves moving forward. While this was not my favorite appointment it is because it is so far from what I have come to expect from them. I have been in situations where this type of appointment was the norm, which is why I have been so thrilled with these doctors and this team. 

On a separate note, I would like to say this, your support and care dear reader are appreciated beyond measure. I want to share this process with you because in sharing with you, I am able to work through the process for myself, share with others in my same position, and record forever how this process felt. This said I need to make it very clear, no one, not one person on this earth is more invested in my health and well-being than me. I am and will continue to do whatever it takes to give myself the longest and most full life possible. This is not a post telling you I have doubts about my team. If I doubted my team, this post would be about ME looking for a new one. All of this is to say, please don’t tell me I need to change doctors, teams, and locations. That is a decision for me to make, and extra input from others, though I know meant well, only causes me more conflict than is needed. Should the moment ever come that I feel that a change is needed, I will do the research, and find the place that is most suited to my needs. I have done it before and if needed I will do it again.  I am after all a grown, capable human.