This week has been very enjoyable away from the hospital. There was an evening where we took some risks at trivia, won big at having a good time, but not as big in the points department. I’ve spent time with Ashley at home, we took dogs to “the swamp” (a trail near our house), and I’ve enjoyed doing some every day “boring” tasks around the house.
Tomorrow morning at 7:30 I have my first outpatient treatment of photopheresis. The biggest challenge for me will begin at around 5:00 when I have to get out of bed, look at my phone and guess how big of a battle traffic will be on I-4. On a good day, it will be a little over an hour and a half drive, while the worst day I’ve had was about 3 hours.
There still hasn’t been any news of substance on the retransplant front, unfortunately. We did receive a call from Cedars-Sinai’s heart transplant patient intake. It was a very generic call informing us of the process of checking insurance, financials, social work, etc. before they do any evaluation. It is a sign they know that I exist, but the information that we had received from my doctors seemed to indicate that they should already have a lot of my medical records already. So, it’s unclear if my doctors have been able to expedite my case with Cedars or if I truly need to start at the very beginning. If the latter is true, it could amount to months before even being listed fairly low on the list. Combined with the timeline of a year I mentioned in Living Our Lives, things would be stressful to say the least, not that it isn’t already.
Back in November, when I was in acute antibody-mediated rejection, I flat lined twice in one night. I vividly remember waking up to the crushing feeling of receiving chest compressions and being held down because of my fight response being activated. For the poetic sake, I could just oversimplify and say implicitly that was the moment my paradigm shift began. Or I could be more philosophical and debate if it was the nightmares that I endured while being sedated for days on a breathing machine during which I experienced, among other terrifying things, voices screaming at me that I wasted my life. Or, maybe it was the weeks of laying flat unable to move with machines pumping my blood, longing for the simple luxury of just being able to sit up to swallow some regular food. However, somewhere along the line, in a way I can’t fully put into words I felt deep within me that I needed to truly live my life.
One of the major components of the paradigm shift was how avoidant I was about so many things in my own life, including my own healthcare. Also, this may come as a shock to many, but I have struggled with self-confidence for a very…very long time. So when I happened to find this article on 5 Daily Actions to Build Your Confidence by Joan Rosenburg Ph.D., I realized that this was bigger than just my self-confidence, it was my health! Not only for me, but this is a survival skill! The traditional stereotype of survival skills is having outdoor survival knowledge, first-aid skills, being able to cook, etc. But we don’t realize how often being able to emotionally deal with something like a major tragedy or crisis is needed at some point by everyone. I can NOW admit that I was NOT equipped in this department when I began this journey of having a major illness. I hope that by sharing my experience and the points in this article I can help you build confidence and in turn, be better equipped with an important survival skill.
The first action Rosenberg points out is to allow yourself to feel the full range of emotions, both pleasant and unpleasant. There seems to be a notion in sectors of our society that people that don’t feel certain emotions are stronger or tougher. But I would argue that if you can allow yourself to face those emotions daily, you will be the stronger person. It would be the equivalent of going from avoiding half of the gym, to using the rest of it. At first, I was very much a believer in the always think positive, don’t let negative thoughts enter the brain. This is reinforced by the health community and innocently by people who truly want to offer support. However, as the article expresses, this is about choosing awareness over avoidance. Allowing yourself to feel sad, angry, frustrated, etc. can lead to action. Avoiding hearing a negative diagnosis or ignoring the warning signs your body is giving you allows disease to worsen and prevents appropriate intervention in the early stages.
Second is to speak up for yourself. I failed to do this on many occasions and this failed magnificently countless times, mostly because I was smiling and thinking, “sweet, this is all going great”. This has resulted in frustration between doctors and myself and allowed poor care on their part more than once because I did not express my needs, desires, or concerns early on. However, on many occasions doctors fail to do this as well and I can assure you that these problems are not isolated between my doctors and me. This is an industry- and society-wide problem. The “god complex” many highly trained specialists have makes them unwilling to accept what they see as criticism from a patient or caretaker, and it means that we need to be polite but firm in expressing our concerns. Rosenberg writes that, “When you tell your well-intended truth, you’ll find that speaking up gives your confidence a major boost, because it helps you live more authentically.” I would argue that it could also save your life.
The remaining three are equally important and it’s definitely worth reading the whole article yourself. Taking actions towards your goals, despite risks. Ending negative self-talk or self-criticism and take compliments.
