Disclaimer: This is not medical advice, nor do I wish to receive advice. By all means share what worked for you, but remember that every person’s body is different and what worked for you might be harmful for another.
It’s rather overwhelming, because there’s a lot, but here’s my medical story in a teeny tiny nutshell:
I was diagnosed with a rare liver disease called PSC when I was less that 4 years old. By age 8 (1995) I had received my first liver transplant from a deceased (cadaver) donor. I was in an induced coma for months afterward and had to learn how to sit up, stand and walk all over again. The liver disease returned right away and I had to get another liver transplant at age 11 (1999), age 23 (2011) and age 29 (2016). All the livers were from cadaver donors. Without their prior consent and/or the consent of their grieving families I would not be alive today. How does one even begin to say thank you for something like that?
Along with PSC I was diagnosed with Crohn’s Disease, Fibromyalgia, Endometriosis, Poly cystic Ovarian Cyst Syndrome, Minor Cognitive Impairment, Depression, Anxiety, OCPD (obsessive compulsive personality disorder), migraines, Restless Leg Syndrome, minor heart problems, Arthritis, chronic anemia, Chronic Fatigue Syndrome, Chronic Pain and all sorts of other little things. In addition to all this, the medication I take to keep my body from rejecting my liver suppresses my immune system meaning I easily catch colds and viruses.
I don’t remember ever not being exhausted and in pain, but I also don’t remember ever not wanting to live life to its fullest. Throughout the years I’ve learned how to manage my illnesses so that I can live semi-normally. I cannot work nor can I be active the whole day, but if I take lots of rests and moderate my activity I can do many normal things. My health is so unpredictable that I could be walking all around town running errands one day and be in the hospital the next.
I have what is called ‘Invisible Illness’ or ‘Invisible Disability’. You would not know I was sick unless I told you, but the truth is that behind all the apparent normality is a world of suffering. I don’t like saying that as I’m a happy person with a wonderful life but I can’t deny it either. Every moment is pain, every moment is struggling against a strong tide of exhaustion.
What makes the difference between a hopeless struggle and a calm determination is what I focus on and how I choose to perceive my world, pain and all. I can be chronically ill and make the best of it or I can be chronically ill and let it’s presence turn me into a broken person who has given up. The choice for me was easy: stay positive, though some days it can be difficult to stay in that mindset.
Despite it all, after my third liver transplant I was able to go through the training to become a certified yoga instructor, be in a theater production, achieve a long-time dream of traveling to Japan and of course, I came to Korea by myself to start learning the language and experiencing the culture. Previous to all of that I had been unable to attend any high school and only some of middle school. However, due to my lifestyle of voracious reading in bed, I was able to get my GED quite easily.
I recently received my fourth liver transplant (October 2016) and I’ve written a two-part series about it for this blog:
I am so lucky to have found and married the wonderful man that I did. His mother had also been in need of a liver transplant and, as a match, my husband Chanshig, fresh out of his military service years, donated 80% of his liver to save her life. He went on to become a veterinarian, meaning that we share both an interest in medicine and a love of animals. I could not be more grateful for the understanding of my husband and his family towards my illnesses.
I intend to blog more about chronic illness, especially while living in Korea, so stay tuned. Also, check the Resources page under ‘chronic illness’.