~I’m Gonna Live Even If It Kills Me~
And that’s the spirit from now on. What’s going on? Well, I woke up. Into spring. Slowly back into life. I’m feeling more energetic and my brain fog is finally clearing. I still have hypothyroid symptoms but I’m hopeful they’ll abate after some time as I’ve upped my T3 meds and am taking iron. As my brain is slowly starting to reboot and I’m once again able to think clearly, I realized that I’m the best expert on my body. Not my doctors. Not lab results. I’ve always been an odd case anyway, or as a friend would say, “a special snowflake” ;). You can’t always find cookbook solutions to every medical problem under the sun.
I already have very rare diseases and on top of that they aren’t always acting as they’re “supposed to” if compared to medical textbooks. I react weirdly to some treatments. My symptoms and lab results can be off by a mile. I understand that I’m a difficult and annoying case for any doctor. Even for myself. And in today’s health care, professionals just don’t have the time to really dig deep into the affairs of one odd patient. I understand that. I’ve been there. But that doesn’t mean that I don’t deserve the best treatments and best outcomes for my life, and for my health.
From now on, I’m taking full responsibility for my health. I will consult with my doctors on how to treat me but I will make the final decisions. I will not outsource my health and wellbeing to other people anymore. They might mean good and have my health interests in their mind, but I’m the one who has to live in my body 24/7.
I’m not settling for just barely coping with my illnesses. I will not cohabit with weakness. I will fight my way back into life that resembles more normal than just lying on the couch suffering. I want to travel and see the world. I want to be able to stay up late(ish) with my friends. I want to train hard and become an better athlete. I want to experience life. I want to feel – and be – alive.
I have to decide whether I can and want to withstand low cortisol symptoms just that I might have a slightly smaller risk to develop osteoporosis in the next 30 years or so. Thanks to my genetics, I already have a huge risk of vascular heart disease, for example – cortisone substitution or not. If I’m too weak and nauseous to exercise, how can I prevent the health risks of the future? If I’m too tired and brain foggy to work, who will pay my bills? And will my doctors take responsibility if I make wrong decisions at work and a patient suffers because of it? No, they can’t and won’t. I will take full credit from both smart and dumb decisions I make. But I will learn and improve.