Everyone has a story. Everyone also has a battle. The battle is what makes us, and our story, interesting, strong, and beautiful.
"You are not responding to treatment and without a major improvement in your numbers we are not sure you will live more than a couple months." When your doctor says that you dying soon is a high possibility let me be the first to inform you - it isn't awesome.
At 18 I spent my entire senior year working my ass off to get into the United States Naval Academy - that venture was a success...until I started getting sick and had to leave. So there I was - 18 years old, at home, all my friends off to college, and home sick. I had been extremely healthy my whole life so being sick was like being on an alien planet I just figured I will take some meds and then be on my way. Unfortunately that is not how an autoimmune disorder works.
My liver numbers were so high that the docs couldn't understand how I had functioned for so long without complaint - I have no explanation for other than I hate being sick so I usually stick the path of denial when I don't feel good. Anyways, the doctors couldn't get my numbers to come down and things were looking to good and my parents are freaking out and I just got mad. I expected to feel sad or scared but I was incredibly angry. I was 18 and had worked my but off to die before I got to do any of the great things I had planned?! LUDICROUS!
This anger - which usually kept me in some measure of trouble - was my saving grace because I looked at my doctor and told him "Well, dying isn't an option right now I have things to do." I must have said it with a bit more punch than intended because he seemed hesitant to respond but finally he said, "Okay."
Then came the insurmountable joys of extremely high doses of prednisone, liver biopsies, blood tests, and frustration. But finally my numbers started to fall. My numbers are still unpredictable and I take the steroids and the immuno suppressants and feel tired and icky buuuut I am still here. I wake up every day and think about the last five years. I was told I wasn't going to see 20 but here I am at 23. I didn't think I would get to go to school, get a degree, date and get married - I have done all of these things. So everyday I wake up and count my blessings and remember that it is always worth the fight.
Powerful story! I'm so so happy to have you in my life!
ReplyDeleteThank you! And I am so happy to have you in mine to help to remember to find happiness in adventure and friendship!
DeleteLove your blog and I loved this post! Thanks so much for sharing. I have AIH (was diagnosed at 23) and it really sucks and no one ever really understands what its like. So, I'm glad you started this blog to share your story and I look forward to reading more of your posts! And, Congrats on achieving all of those amazing goals - getting your degree and getting married! Keep on fighting ;)
ReplyDeleteNadia thank you so much for taking the time to read my story! My hope in starting the blog was that it would help bring those with AIH together so that we don't have to feel alone and frustrated at the lack of understanding! I will have a new post up soon and will continue to post to raise awareness and remind my fellow AIH sufferers to keep fighting!
DeleteHi,
ReplyDeleteI can totally relate to your story. Like you I was diagnosed at 18, following a period of sickness, during my first year of uni. I ended up finishing uni, then working for a few years before going back to university where I have just completed a Masters.
I am now 28 and my liver tests are stable. On fairly low doses of medication and yes I take the dreaded prednisolone but my body seems to have adjusted and I am at my pre illness weight and look fairly healthy.
Keep up the blogs :)