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Wednesday 17 October 2018

New challenges

A lot has happened since I last wrote on this one. I have moved to a different country. I have gotten so many new experience and challenges. I wanted to write about my next new journey.

Since I last wrote, I had gotten a new health problem. Until last November, I lived my life normal. I was working, taking my ADHD meds and living normal life. Well, as normal as life with ADHD ever is. I have type 1 diabetes and due to that I get yearly blood tests. These are routine. They always test my cholesterol, renal function and liver function. My ALT levels were high. Their range is up to 52, and mine was almost 300. Doctors continued to take more blood test to see if they would spontaneously go down, like they do sometimes. They didn't. In fact, they were getting higher. They took more tests and I was getting some odd readings. My liver function has never been compromised and my liver works fine. Something is just destroying it. They took me off Concerta, because it has a rare side effect of causing liver damage. They referred me forward to liver specialist. They took more tests, including MRI, fibroscan and biopsy. Now almost a year and long road of the doctor's going back and forth what is causing my liver issue, they are doing the last test. They believe I have something called autoimmune hepatitis. It's autoimmune condition, where the body attacks the liver cells. Only treatment for this is steroids and immunosuppressants. They first start you on the highest possible dose of steroids, budesonide in my case, and let the inflammation heal. You will be able to see improvement in blood results in just a few weeks. For me the last test, is to see if my liver values go down with these steroids.

I have several diagnosis, but none of them have been as difficult journey as this one. The doctor's keep going back and forward what I have, they haven't been able to do anything except see what happens. Now for better or worse, I have medication. It's a no win situation in my opinion. If it doesn't work, they don't know what I have. If my labs improve, it will settle that I have AIH. Which means, for the rest of my life, I will take immunosuppressants. Those drugs aren't entirely fun either. I won't be able to be in the sun, because my skin will get even more sensitive to the sun. My risk of melanoma and other cancers will increase. The side effects aren't fun. Steroid side effects include minor but annoying ones like weight gain and moon face (very round face) and major ones like osteoporosis. With others they include, aside from the sun and cancer, horrible nausea, loosing hair and having worse immune system. I know these medications will save my life, but it't not easy to accept that my quality of life will not improve in the future. The disease itself has symptoms, like tiredness, nausea, loosing weight, possibly even cirrhosis. I am lucky that so far, there has been no evidence of serious liver damage. Just that something is persistently attacking my liver. I think one of the biggest obstacles for me is to accept that I don't have energy anymore. Days of feeling like a healthy human being are over.

Hopefully I will remember (I haven't been on ADHD meds for almost a year now and symptoms are fully back with new ones) to write about my journey to new health issues and how to overcome the mental effects of this new problem.

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