Pride and Prednisone

Prednisone. Life saver. Treatment for Auto Immune Hepatitis. Pain in my freaking ass.

It keeps my liver numbers down and prevents me from going all jaundice and keeling over but I am thoroughly convinced that prednisone was invented by the devil himself.

When I was first diagnosed with AIH extremely high doses of prednisone (wiki article to give those of you that don't know an explanation of the steroid treatment) was my only treatment option. I literally puffed up from so much water retention that my skin started to split open. Awesome. It has a ton of awful side effects, all of which I am lucky to present with - I am just that fortunate, try not to be jealous. It makes my hormones change fast enough and violently enough that my mood swings probably register on the richter scale (everyone please throw up a prayer for my hubby as Lord only knows how difficult I can be to handle - and you other guys thought regular PMS was bad - psh). I hate prednisone.

I hate the drug that keeps me alive. I feel mildly ungrateful and then I look at photos of myself from the super high dose days and I look like a very rotund man of an Asian persuasion - frightening considering I am both a woman and Caucasian. Prednisone kind of likes to kick you while you are down: while it makes you feel really terrible physically but in my experience it is also impossible to feel cute, adorable, pretty and certainly forget beautiful and sexy while taking prednisone. This is very vain and shallow of me but some how looking as ugly as you feel makes feeling grody way worse. It isn't so great having to deal with the hot flashes, fatigue, night mares, anxiety attacks, or sleepless nights either.

A few months back I had a doctor switch me to entocort - which is kind of like prednisone but without all the side effects. Of course it doesn't work me -- for those of you that it does work for: HALLELUJAH! I am so happy you are no longer stuck in the plight of  prednisone. As for me, after finding out the entocort was ineffective I had to go back to prednisone. My hate for the drug runs so deep that my husband had to fetch it from the pharmacy because going to pick it up put me in such a stupor I couldn't manage. The night I was supposed to start my first dose I sank to the floor and stared at hell in a bottle. At first I got upset and tears welled up in my eyes then I got mad - if I could I would probably punch whoever invented prednisone in the face. I stared at the large dose sitting in my palm and finally put my anger, vanity, and displeasure aside and took my medicine. Every night I still get kind of angry that I have to take this stupid medicine that keeps me alive but makes my life worse in almost every way but then I remember: It isn't forever, and it could be worse. I am alive to fight another day and vanity is hardly a reason to get my panties in bunch and stop fighting the good fight.

For those of you that take your meds without complaint - God bless you. For those of you that do complain - you can come sing in my choir any day. But to everyone who has to take prednisone - all of us that have to take it feel your pain so take heart in knowing you aren't alone in dealing with the ridiculous side effects. And for those of you that have loved ones that have to deal with health issues and the dreaded prednisone - please remember to be patient and to love them even when they are being difficult because I guarantee you they are trying their best to put on a good face and enjoy the day.

Remember the bad days never last, you are not alone, and it is life always worth the fight.

Long Story Short

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.