It’s been a bad day. You might even say a bit of a sad day for me. I went through a lot mentally related to my autoimmune diseases. I am still a bit upset by my recent test results and I’m having a bit of trouble processing it. I already knew that I had PBC so I am a bit surprised at my mental reaction to that news. I did not expect the results to say that I am stage 2. That blew me out of the water. My Fibroscan put me at a stage 0, so that was what I was expecting from the biopsy. I still haven’t wrapped my head around the fact that I am a stage further than we originally thought. A stage closer to needing a transplant… a stage closer to death.
It snowed today and flared my Raynaud’s something fierce. I stayed inside most of the day and watched my children play and shovel the snow. And I cried. I cried because I am missing their lives; watching them from windows while they’re having the time of their lives – without me. It’s sad. I’m sad. I’m already watching them grow up way too fast, but they are growing up with a sick mom who can’t do all the stuff that other moms can do and it sucks! I want to go outside with them and build snowmen and shovel the walk with them. I want to make memories because soon that will be all they’ll have of me, and that thought breaks my heart.
You would not believe the mental changes you go through when you get a diagnosis, especially something as serious as PBC. I had no idea prior to my own diagnosis that there were people suffering like this. When I was first diagnosed I went through the stages of grief… all of them (or so I thought). I never quite came to acceptance of my diagnoses. I always tried to convince myself that it was a misdiagnosis. Certainly this couldn’t be happening to me, but it certainly was and is happening to me. I have no choice now but to learn to accept it. I feel like I’m still going through the stages of grief, or maybe they started all over again. Stages… that’s all I’ve got now… stages.
I’m trying to find the bright side in all of this, but on days like today it’s hard to see anything other than the darkness that has taken over me lately. I do have an amazing husband that supports me to no end. He’s always there to pick up my broken pieces, and he’s been working overtime with all of my issues these last couple of weeks. Poor guy! He is my rock, especially during times like this. After 15 years together, he usually knows just what to do or say. I try not to be too much for him to handle, but this week I failed at that – miserably! I would be so lost on this journey without him. Hold your family tight tonight and cherish every moment with them. You never know when something will happen that will turn your world upside down. It happened to me three years ago and I am still reeling from it.