
I blew it.
I thought this Crohn's flare would get better on its own.
I believed I could control this disease with diet.
I was wrong and it was a hell of a way to discover how wrong I was.
I love my family. I didn't like the look on their faces when they came to the hospital to see me. I will never forget the ash gray flesh that colored my husband's face. I never understood what my daughter went through when she was on high dose steroids. I didn't know that moods can cycle so fast, that one moment you are crying, the next laughing, the next so exhausted you can't move from the bed.
I remember the look on the emergency room doctor's face and his tone of voice when he said, "Why did you wait so long?"
The dreaded word sepsis, bacterial infection, bags and bags of antibiotics and they loaded me with 10 pounds of water. That is correct, 10 pounds. In 24 hours. I still can't wrap my head around that. How does that happen? Where does it all go?
What really scares me is how poor my judgement became. I did things no normal person would do. I wonder how, on Tuesday, I actually thought I could go to work. I look back and it shocks me that I drove myself to the emergency room. Was it the Prednisone? The fever?
Crohn's is a disease that affects almost every aspect of your life. When you are young you are able to build pathways around the disease so you can live a fairly normal life. But when you are older, you face the disease with lots of heavy stones in your pockets. You tire easily. Quiet becomes your friend. Peace is a necessity.
I have a plethora of pills on my kitchen counter and am taking more steroids than I thought possible. I am so tired and so strung out I don't know which way to turn. My sister-in-law was here today, bearing with her all the horrors of a colostomy. Fear overtook me. then I remembered Alex, a wonderful RN who sat me down yesterday to tell me that it's not that bad. They move a few things around, make a stoma, attach a bag and you are off and running. Lots of people have them. It is not the worst that can happen.
I thought cancer was the worst, but for my sister-in-law, clearly, a stoma is the worst. On my to do list is a clean floor. On her to do list is clothes and furniture. She spends time on herself. I throw on whatever is around. Today she was dressed in gold and looked lovely. I forgot to take a bath after the hospital and threw on a wrinkly shirt and holey pants. She gave me a Coach purse for being sick. I gave her a candle. We are different and we are learning to appreciate the differences in each other.
New year is a special celebration I will pass on. The family will be at the son's house, eating Mexican, Italian, and Chinese dishes. Though they don't know it, I celebrate their diversity. The beauty that each culture brings to the table is just stunning. My daughter-in-law's egg rolls are to die for and with Wendy and Jamie on the tamales they are sure to be perfection. Even though I can't partake of the festivities this year, I have promised myself that next year I will be there, mouth open, and ready to party.
As I am not yet dead, I shall partake of one little cheat today. My daughter, Shannon, told me about vanilla ice cream with a dash of Kahlua so the husband went to the store and bought me a bottle. I am dying to try it. Well, not dying. But looking forward to a blast of sweetness in my mouth.
I love you Shannon. I never knew how difficult it was for you. I would give my life to have you free of this burden and I am so sorry that my genes expressed in you and your brother. I want you to know your positivity lights a fire in me when I feel down. If you are reading this, you are thinking, ah, Mom, it's the steroids. Maybe and maybe not, but my respect for you has grown seven fold.
Happy New Year everyone.
I thought this Crohn's flare would get better on its own.
I believed I could control this disease with diet.
I was wrong and it was a hell of a way to discover how wrong I was.
I love my family. I didn't like the look on their faces when they came to the hospital to see me. I will never forget the ash gray flesh that colored my husband's face. I never understood what my daughter went through when she was on high dose steroids. I didn't know that moods can cycle so fast, that one moment you are crying, the next laughing, the next so exhausted you can't move from the bed.
I remember the look on the emergency room doctor's face and his tone of voice when he said, "Why did you wait so long?"
The dreaded word sepsis, bacterial infection, bags and bags of antibiotics and they loaded me with 10 pounds of water. That is correct, 10 pounds. In 24 hours. I still can't wrap my head around that. How does that happen? Where does it all go?
What really scares me is how poor my judgement became. I did things no normal person would do. I wonder how, on Tuesday, I actually thought I could go to work. I look back and it shocks me that I drove myself to the emergency room. Was it the Prednisone? The fever?
Crohn's is a disease that affects almost every aspect of your life. When you are young you are able to build pathways around the disease so you can live a fairly normal life. But when you are older, you face the disease with lots of heavy stones in your pockets. You tire easily. Quiet becomes your friend. Peace is a necessity.
I have a plethora of pills on my kitchen counter and am taking more steroids than I thought possible. I am so tired and so strung out I don't know which way to turn. My sister-in-law was here today, bearing with her all the horrors of a colostomy. Fear overtook me. then I remembered Alex, a wonderful RN who sat me down yesterday to tell me that it's not that bad. They move a few things around, make a stoma, attach a bag and you are off and running. Lots of people have them. It is not the worst that can happen.
I thought cancer was the worst, but for my sister-in-law, clearly, a stoma is the worst. On my to do list is a clean floor. On her to do list is clothes and furniture. She spends time on herself. I throw on whatever is around. Today she was dressed in gold and looked lovely. I forgot to take a bath after the hospital and threw on a wrinkly shirt and holey pants. She gave me a Coach purse for being sick. I gave her a candle. We are different and we are learning to appreciate the differences in each other.
New year is a special celebration I will pass on. The family will be at the son's house, eating Mexican, Italian, and Chinese dishes. Though they don't know it, I celebrate their diversity. The beauty that each culture brings to the table is just stunning. My daughter-in-law's egg rolls are to die for and with Wendy and Jamie on the tamales they are sure to be perfection. Even though I can't partake of the festivities this year, I have promised myself that next year I will be there, mouth open, and ready to party.
As I am not yet dead, I shall partake of one little cheat today. My daughter, Shannon, told me about vanilla ice cream with a dash of Kahlua so the husband went to the store and bought me a bottle. I am dying to try it. Well, not dying. But looking forward to a blast of sweetness in my mouth.
I love you Shannon. I never knew how difficult it was for you. I would give my life to have you free of this burden and I am so sorry that my genes expressed in you and your brother. I want you to know your positivity lights a fire in me when I feel down. If you are reading this, you are thinking, ah, Mom, it's the steroids. Maybe and maybe not, but my respect for you has grown seven fold.
Happy New Year everyone.