It has been a few months now and I still have trouble with my Bells Palsy. I still dribble at night when I sleep. Liquid still spills out of my mouth when I drink, or brush my teeth and gargle, or just talk. Eating is difficult. I have to mush my face up like a contortionist does with their body. I've never actually sat down with a mirror and watched myself chew, but I imagine it looks very scary. Kind of like a dog eating peanut butter. Kids might run. My kids just laugh.
On Saturday I celebrated my three year anniversary being on the transplant list. When I first went to clinic they gave me 18 months without treatment. I am happy to say that I have doubled that figure and still hold on to a quality of life. While it is true that there are difficult days, my good days still out weigh the bad. Unfortunately each of these days is accompanied with some sort of pain. I am not in agony, I'm just sore. Losing your muscle mass is hard when it is all you have to support the 185 lbs. you carry around. The weight gain doesn't help either. I must have 10 pair of pants I can't wear because I no longer weigh 135 pounds. I have however had some very hard times in the past couple of months. My edema and psoriasis got way out of hand and 3 bouts with encephalopathy have left me confused and mentally unbalanced. I think we have all of these under control now.
It is hard to believe that it has been over three years now; that time has taken hold like a doomsday clock. There are no numbers counting down to zero, just the knowledge that the body can only go on so far. We still have a couple of years to get through this. I think in a way it is the waiting that drives you mad.
My family continues to remain strong. The kids are doing alright. It is Lois who seems to carry the brunt of it all. She is exhausted and worried and physically ill. I can only pray that I can give back what I've taken from her.
I am doing alright. I am happy. I have a sense of humor. And I'm alive. What more can I guy ask for.
On Saturday I celebrated my three year anniversary being on the transplant list. When I first went to clinic they gave me 18 months without treatment. I am happy to say that I have doubled that figure and still hold on to a quality of life. While it is true that there are difficult days, my good days still out weigh the bad. Unfortunately each of these days is accompanied with some sort of pain. I am not in agony, I'm just sore. Losing your muscle mass is hard when it is all you have to support the 185 lbs. you carry around. The weight gain doesn't help either. I must have 10 pair of pants I can't wear because I no longer weigh 135 pounds. I have however had some very hard times in the past couple of months. My edema and psoriasis got way out of hand and 3 bouts with encephalopathy have left me confused and mentally unbalanced. I think we have all of these under control now.
It is hard to believe that it has been over three years now; that time has taken hold like a doomsday clock. There are no numbers counting down to zero, just the knowledge that the body can only go on so far. We still have a couple of years to get through this. I think in a way it is the waiting that drives you mad.
My family continues to remain strong. The kids are doing alright. It is Lois who seems to carry the brunt of it all. She is exhausted and worried and physically ill. I can only pray that I can give back what I've taken from her.
I am doing alright. I am happy. I have a sense of humor. And I'm alive. What more can I guy ask for.
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It's so good to see your post and catch up on how you're doing. I'm impatient and can't imagine three years on the list, with the illnesses you've endured, while your MELD score yo-yos. I admire your strength and courage, and your wife's, as well. It's so much harder to be the caregiver. May God bless you all, give you peace and comfort while you wait, and provide you with laughter to help you bide your time.
ReplyDeleteGood wishes for a better next 18 months.
ReplyDeleteI just told my dog about your bit about dogs eating peanut butter and she smiled and said- at least there is peanut butter. Here's to the moments of blessing in between.
ReplyDeleteYou live with courage and so does Lois. I admire you both.
ReplyDeleteWith healing hugs,
Deb
Your spirit shines my friend.
ReplyDelete