Today has been a very trying day for me, and I need somewhere to release it all so here goes… Last night, my best friend was rushed to the hospital via ambulance. Her oxygen was dropping fast and she was dizzy. We called 911 and they transported her to the local hospital, which unfortunately, does not allow ANY visitors due to COVID-19 requirements. Once she was there, they ascertained that she was missing half of her blood volume, was severely anemic, and needed a blood transfusion immediately. It was decided that 4 units is what she needs. I’m usually the sick one in our group, so this has been an interesting experience. I tend to worry about everyone way more than I need to, and that’s even worse when it comes to my best friend. There is nobody that I am closer to (with the exception of my husband) than Devan. So, when she was rushed by ambulance, I lost it. Luckily, she’s doing much better now and should be released to go home in the next few hours. I’m thanking the Gods that she’s going to be alright. She gave us all one Hell of a scare.
At the same time that I was dealing with the emotional load of my Bestie heading into the hospital, I got word that one of my PBC friends is in crisis. She had been in the hospital for the last month, and it has now progressed to the point that she is on life support and is not expected to recover. They’re keeping her on life support so that her family can come and say goodbye to her. It’s a very sad situation and has really affected my mind a bit. I look up to this particular friend and she is one of the first that we all reach out to with questions about PBC. She was a support group leader and always such a delight. Her impending death is really making me face my own mortality, and the very real possibility that this disease will take me out, too. PBC kills people and it’s killing my friend. I’m so sad… and mad. I want to scream and cry. I want to punch a wall. I feel like I’m in a room with the walls closing in on me. It’s just so unfair. The American healthcare system has failed yet another PBC warrior and I’m angry about that. She didn’t have to die. They could have given her the liver transplant that would have saved her life. She’s got a daughter that is now going to grow up without her mother. There’s nothing that can make that okay and none of us are okay dealing with this right now.
I’ve been an emotional wreck since last night, but Michael took extra time and care with me. He fully understands why I feel the way I do and he has been very loving and understanding with me. I think it hits a little too close to home for him, too. He won’t admit it but he worries that this will also happen to me one day. He’s been to all of my doctor’s appointments. He was there when they told me that I’m a dying woman, and neither of us have forgotten that. Reality is hard to face sometimes, and I’m struggling with this one. I’m just blessed to have Michael by my side, compassionately helping me through all of this turmoil that I’m going through right now. I would be so very lost without him.
My autoimmune life is really teaching me some hard lessons theses days. Lessons about life and death. Lessons about honor and dignity. Lessons of advocacy. The list could really go on and on. The point is… I’m going through it. None of these lessons are easy to accept. Nobody wants to think about death if it can be avoided, but once you are told that you are dying, that is just about all you think of. It’s on my mind every moment of every day. The thought never leaves my mind. There is no rest from the incessant worrying about it. This past week, the Scleroderma and PBC groups both had several deaths. It’s been a lot to process. I grieve for every single warrior that is lost, whether or not we were close. We were part of a bonded group. They are my brothers and sisters and we are like a family, all fighting the same disease together. I am not alone in my grief this week. There are several others just like me, feeling the same way. Facing this reality has been one of the hardest things I’ve had to deal with in a long time. Gods help us all…