What It Is



Autoimmune Hepatitis is a rare disease in which the immune system attacks the liver, mistaking it for invading cells. There is no cure, but there are treatments that keep it under control. Prednisone is the usual treatment but may be paired up with or replaced with azathioprine, budesonide, mycophenolate, cyclosporine or mercaptopurine. Approximately 70% of those affected are women.

I am in no way an expert on this subject. Every day is a learning experience.

In this blog, I will revisit my experiences and post current experiences. I will also add information I find useful and probably some rambling.


Saturday, October 6, 2012

Turmoil Within

Today is not a good day. Lots of inner turmoil. I've noticed it happens after I've had good days. Having trouble organizing my thoughts and struggling to stay out of depression. I am physically and mentally wore out.

When I have good days, I am able to accomplish a few things around the house and be physically active. When one feels really good, one can't help but enjoy it as much as possible. The aftermath sucks, though. Too much activity means excessive sleep and when awake, thoughts of uselessness and self pity set in. I am at that point.

I hate not having the energy to get up off the couch. I hate not being able to do something as simple as sweeping the floor. I hate the thought that I can do these things, but why am I not doing them. I hate the conflicting desire of wanting to do something and not caring about getting it done. I hate feeling useless yet not being able to be useful. I hate the thought of my husband having to do everything and what he is truly thinking about me on these days, which are numerous. He says it's okay, but I can't help but wonder. I hate wondering about my existence in this state. I hate feeling sorry for myself and being unable to move forward. I hate being like this. I am afraid to be left alone, yet I want to be left alone. I am afraid of what the future holds for me. I am afraid of failing in God's eyes. I hate being afraid. I hate this. I don't want to be like this.

I used to be a very active person. I had horses and rode a lot. I loved taking care of them and the all the work it required. I loved to garden. I loved picking rocks to make a patio. I loved making that patio. I loved going out in the woods to help cut up fallen trees. I loved running everywhere to do interesting things. I miss starting a project, getting sidetracked and starting another one. I miss my husband being mad yet entertained by my inability to stick to one thing. I miss running through the woods with my dog. I miss helping out anybody that needed an extra hand. I want my life back, even if it's just a portion of it.

Every day I have joint pain, some days are worse than others. Occasionally my skin is extremely sensitive and wearing clothes is uncomfortable. If I'm not careful, I pick up whatever bug is floating around  (and thanks to some people, even when I am being careful) What lasts a day or two for most people, last a week or two for me, usually morphing into a secondary infection. I am okay with all of the physical aches and pains because it reminds me I am not crazy. I am not okay with the fatigue that results in mental distress.

I don't even like to talk about it much to my husband, family or friends. I feel like I'm putting them in an uncomfortable position. I am told I can lean on their shoulders, but I keep thinking who wants to listen to the same story over and over again. If I am asked questions, I have no problem answering. I am told I am strong for dealing with this. I am not strong. I cry a lot. I don't want to worry or burden anybody, but I want somebody to take it all away. I am not strong. I can honestly laugh and make jokes about all the bad things. My personality is to make light of a bad situation, but the bad days kill that part of me. I am not strong.

Being part an online support group has helped in so many ways. I learn we all go through this, plus more. I can tell them things I can't bring myself to discuss with the people close to me. I have learned through this method that writing out how I feel is much easier than talking about it. I find the thought of people whom I have never met reading my inner thoughts is easier than letting people I care about know. I am guessing it is because I don't want them to worry. I want them to believe I am strong. I don't want sympathy, just understanding. If you feel sympathy towards me, I find no fault in you. Thank you for caring enough to feel that.

I believe that starting this blog will help me whether anybody reads it or not. My thoughts may not make sense, but I am already feeling a bit better having gotten it out.

I will become strong.

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