Fear is the Enemy of Logic

Being sick is scary.

I am sure it is awful for everyone - no one likes feeling atrocious and helpless - but when you have an immune problem being sick is like a thousand times more intense.

As an extremely healthy person for 18 years of my life being sick was a rare and annoying occurrence. Now I have AIH and take medicine that will make a minor cold seem like world war III in my body. It makes being really sick - scary.

In the autoimmune community we hear sad, horrific stories about people, like us, that lost their battle - not with their specific disease but because of some virus or bug that their now heavily medicated and muted immune system couldn't handle. It is sad and terrifying. I take all this medicine to keep my liver functioning and all that medication could very well kill me...talk about a catch 22.

Recently I had a lovely bought of salmonella. Probably one of the worst experiences of my life. While being that ill was awful what was more terrible was the fact that while I was sick no one knew it was salmonella and I had pretty much convinced myself my body was in self destruct mode. No one likes being sick and no one likes being scared. I was very much both of these things - which is very hard for me to admit but for the sake of being honest I have to say it.

Even worse than being horrified myself is watching my husband- and my mom, who flew half way across the country because I called her convinced I was going to keel over at any moment, sit worried and just scared. It is in my DNA to want to make everyone feel better (my best friend calls this my super hero complex) and so watching them be scared and worried and tired and being so scared and worried and tired myself that I didn't much reassuring to say just made the entire situation grow exponentially worse with each passing minute. It was on the third night without food or water and still being violently ill with all my blown veins and shots to the stomach that I looked at my dear sweet exhausted husband and he said "Its okay to be afraid." and he kissed my hand.

Ladies and gentlemen you may be thinking "duh that stuff is really scary why wouldn't you be afraid" but it took that moment for me to realize that not just when we are sick and dealing with the usual battles of autoimmune problems but really all the time:  it is okay to be afraid. That is how you know you have people you care about and things to accomplish in this world. The problem is not letting that fear dictate life.

 I had started to let the fear of being sick, of doing too much, of having to explain my illness and deal with the judgement, the fear that this stupid autoimmune deficiency is going to kill me - mute my existence. It just is not logical (fear rarely is logical). I have found that admitting to the fear - which is really the hardest part for me - is the first step in overcoming it. I was not put on this planet to live a quiet meek existence and I am doing a disservice to myself and the people I want to help by letting fear of my illness, medications, hospitals, and all that jazz dictate how I interact in this world. So I have made a promise to myself - and to all of you - that when things are scary I will admit to the fear and embrace it and I will make something good come of it.

This life is terrifying but wonderful and it is always worth the fight.

Ignorance is NOT Bliss

It is annoying. 

Whether you have AIH or someone you love does we have all been through the awkwardness of people being ridiculous about our immune disorder. 

Let me be completely clear so there is no confusion: Autoimmune hepatitis is NOT contagious.

It is an autoimmune disorder and thus by definition a problem with my immune system.

So, I do not have a drinking problem - nor have I ever, I don't do drugs/ use dirty needles, I don't hang out with the wrong crowd - my body just has some self hate issues OKAY?! So stop with your assumptions and asinine comments. If you don't know then ask in a respectful way because I am more than happy to discuss it but don't look at me with the sketchy expression or roll your eyes and back up a few steps so you don't "catch" my disease.

Also, medical professionals the same goes for you. You have an education in medical issues and yet you still don't seem to understand AUTOIMMUNE. Putting on 5 gloves and a hazmat suit makes you look like an idiot and makes people think I am carrying some sort of crazy contagion - so stop before you hurt yourself or I hurt you out of frustration.

For those of you that don't know the simplest way I have found to explain AIH is as follows: 

You know if you were to get a liver transplant but you body rejected it? Well that is essentially what is happening. My body has a hyper active immune system that has started attacking the good cells of the liver because it thinks they are bad. This causes scarring and damage and is very bad so I take drugs that suppress my immune system and keep inflammation down so that my liver can keep me alive! And it is an autoimmune disorder sot his means that it is in no way contagious.

To all my fellow AIHers don't worry we all have wanted to punch at least one person in the face because they make assumptions and say stupid crap. I have found I have to choose my battles. In effort to raise awareness I try to explain it. But, where I can fix ignorance I can't fix stupid, so sometimes just smiling, shaking my head, and walking away is all I can do. I have even though to myself that if someone is that ridiculous and moronic that I am glad they think I am contagious because then I don't have to work so hard to avoid them.

Having AIH is cumbersome and annoying and exhausting and to have to try and explain yourself to every new person or group can just make the entire ordeal overwhelmingly frustrating. Just remember you aren't alone in the fight or the frustration and hopefully the more people we are patient with and don't judo chop int eh face the more people will know about AIH and we can start spending less time explaining ourselves.

Stay strong and remember to smile because it is always worth the fight!

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.