I don't feel like writing another entry. My body hurts, and putting AIH into remission is going to be a bitch. But I have to allow myself that time, you know, to heal, to mend, to just be okay about how this needs to evolve. It isn't comfortable saying I'm going to take care of myself. I've spent my life as a mom, so caretaker is really the only title I ever knew. As a child, my emotionally absent mom who preferred psychological torture and punishment, made it so even then I knew deep down that all I had was me. Somehow, I made it. Somehow that child survived. And somehow.. I will continue to do so.
I'm fighting like hell not to lay down, to give in to the discomfort and pain, fatigue and sluggishness that began returning with the first taper-down of prednisone. I'm fighting that, because if I don't... it will win. And I can't have that. So what I'm doing now is continuing to reassess where I am and planning a strategy that I know will help me. Some of this I can do on my own, and some of this I will need help to keep that forward momentum. T would be instrumental in that IF he were plugged in, here in the present, and not mired in doing the bare minimum required in life overall just to get by. How can someone that unmotivated be so successful financially? Don't know. What I do know is that I'm mostly on my own, and that means all focus for healing must be spent aimed in the right direction.
Remission is the goal. Feeling GOOD, even GREAT is the goal. Being happy, healthy, inspired and excited about my life... THAT is a goal. MY goals. No matter if I have the actual stamina at the moment to make it all happen at once, but I can't give up. What energy I have will now be directed solely at taking care of me. I have to. My survival depends on it.
I know what I need. I've always known what I need. There have been a couple of people in my life who decided THEY were experts on what I need. And they were and ARE completely WRONG. I knew this then, and I know this now. My approach now is to listen to myself, because no one is an expert on me.. except me.
T has no idea what I need. He's not horrible, mean, nor hateful (well, except on a couple of occasions when he chose to be an asshole and regretted it). He is, in some ways, worse than 'mean.' To me, indifference towards another person, not SEEING them, HEARING them, and unplugging because you're lazy is far worse in many ways. But I'm not going to focus overly on that, because my point here is that he is of no help. I have ME.
I've had to say it out loud, my truth. I've had to say the words that make it real so I can take every measure to improve my chances and LIVE.
I have an autoimmune disease. The one I have attacks my liver, specifically, but wreaks havoc throughout my entire body, leaving much damage in its wake. I have Autoimmune Hepatitis, and I will have this disease for the rest of my life. I don't have all of the answers. I don't know my specific odds just yet. It's too soon with treatment for me to know anything but what I feel and experience daily as I strive for remission.
How long will remission last? Unknown.
The odds are great that most with AIH will relapse within 12-24 months, and with a second (or multiple) relapses prognosis becomes more grim. I know with a second relapse I will be placed on an immunosuppressant, and most likely for life.
The drug that helps me hurts me. But it's a necessary evil, because the alternative is early mortality if this isn't treated quickly and appropriately. This is an aggressive disease that requires aggressive treatment in most cases.
There is a chance, a good chance, that I will never ever feel 100% like myself again. There will be good days and bad days, and I won't be able to predict which days will be which.
This disease can and often does cause secondary problems, such as pulmonary. I have to accept the fact that this has already occurred.
I have portal hypertension, and though it's mild at this time, it points to the presence of liver damage. I will believe, until told otherwise, that this damage is mild.
I wasn't told I have fibrosis or cirrhosis. I will accept that as confirmation that I don't have those problems. Yes, I know that this 'don't ask' policy I've taken on is a little silly. But I'm sure my doctor would've told me it were the case if I had either.
This inner dialogue is what I live with now. My constant mantra as I taper down the prednisone has returned to: "I can do this! I can do this!" as I go about my usual daily routines and chores. I talk myself through everything.
I miss that first week on Prednisone, when I felt the pain subside, my energy return, and my thinking clear. I don't know if that feeling of returning good health is something that will return. I don't know much of anything at the moment.
I understand that what little information that is out there for this disease simply isn't enough to help me understand what's happening to me. I'm confused and need answers. But there simply isn't enough out there for me to glean any real understanding of this situation that has radically changed my life.
I'm told I have the "Type 2" variety, that mostly effects young women... but can happen to older women too. Type 1 is rare enough, but Type 2 is even more rare, and often with a poorer prognosis as those patients, patients like me, often don't respond well to treatment protocols, have partial success, or quick and multiple relapses causing further liver damage.
I know diet doesn't help, it doesn't heal, it has no effect except in the case of salt intake and cirrhosis. I don't have cirrhosis, so I'm not sure how much salt will effect me if at all. I can't turn to diet to fix this. Nothing will fix this. Treatment is management of the disease, as there is no cure.
I understand that NOT treating this disease brings early mortality, so I'm planning on sticking with the protocol, even if it does bring on board unpleasant side effects. Weight gain, etc with Pred is a given. Been there, done that, and one struggles terribly after coming off to take this corticosteroid weight gain off. But.. I suppose choosing life and some weight gain at first is better than death.
So be it.
The dialogue in my life has changed. My inner dialogue has changed with the circumstances, and I have to learn how to deal with T's insensitivity where I'm concerned.
...which is another entry for another time.
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