A year ago today, my entire world was about to change forever and I had no clue that it was about to happen. What I thought was a terrible stomach ache was actually my rapidly body dying.
I was brought into emergency surgery after a couple visits to the emergency department. They had to cut me from breast bone to pubic bone so they could see what had happened; the surgeons had no idea what they were about to find. My small intestine had managed to twist itself and had become necrotic. From this surgery they ended up removing a large portion of my small intestine due to the fact that it had died. If they had waited much longer, I would have died along with it.
I was brought out of sedation two days later. The doctor (who desperately needs to learn bedside manner) abruptly told me that “you will never eat or drink again and your quality of life has been severely diminished”. There are no words to describe how I felt. I was beyond devastated. Anyone who knows me knows how I love food. I love cooking it, eating it, hosting people for meals. And I had just been told rather abruptly, that that part of my life was gone.
They didn’t know if I would survive either of my surgeries or my time in between them. There were several times it was very questionable. I ended up needing the second surgery as a result of the fact that I wasn’t getting any better, in fact my health was actually getting worse. During the second surgery, the surgeon discovered that my intestines had continued to die, and it was necessary for them to remove even more than they already had. At the end of it all, I was only left with 5cm of my small intestine and 36 inches of my large.
I was stuck in bed for four weeks, after which I had to relearn how to walk on my own. For every week that you are bedridden, you lose 10% of your muscle mass, so this was quite an undertaking! First time I walked post-surgery I took five steps towards the door, turned around, took five steps back to the bed and then slept for three hours. I had never been more exhausted in my life.
I had to learn about my new body. I had to learn about the consequences of having no small bowel. I had to learn that something as normal as having a drink while eating, chugging water (when you’re literally always dehydrated that is ALL you want to do) or even staying out that extra hour therefore making me overtired would cause me to be violently ill.
I had to come to terms with the fact that I would never go back to the group home work environment. That I can never travel for more than a week at a time because of the expiration dates on my IV nutrition. I’ll never be able to run again. Bike again. Swim in a lake, ocean or public pool again. I couldn’t even read up until last month because I was too fatigued to concentrate on anything longer than a magazine article. And the most painful of all, which I have asked my surgeon about on multiple occasions hoping for a different answer every time, is that I cannot get pregnant again.
I have had to grieve so many things this year, and I still am and probably will be for a long time to come. My heart is constantly aching. I wake up every morning hoping that it was all a horrible nightmare. I so look forward to the day that I can finally accept my fate.
I have had major anxiety all week leading up to today. The one year anniversary of my surgery. My own personal D-day. Today is a lot more painful than I ever thought it would be. I am going to allow myself to grieve today. To spend today in self-pity and mourn my losses.
But tomorrow — tomorrow is day one in my second year of being a chronically ill woman, and I’m going to surmount it. If nothing else, this year has made me more fierce, more passionate, more of a fighter, and more stubborn than I’ve ever been. I will own this new life. I will conquer it. This is my new life. Time to start living again.
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I love it, love it, love it. You Sweetheart, are indeed a warrior, have been your whole life, just more so now. So many people are grateful that you are that, that you didn’t give up your fight and are still with us. As much as you grieve, hurt, fight and and and…thank you for hanging tough. Our life is so much richer with you in it. I am proud of you beyond words and now that you have your own daughter, you know how much you are loved.
You bring tear to my eyes! You are such an inspiration. Thank you for your honesty. You are such a strong woman Carmen! Much love!
You have an army of people all over the world rooting for you girl. I didn’t understand (probably still don’t) how shocking and devastating this experience has been.
We love you Carmen! More than anything, I wish you could come back to the group home with us. And while we miss working with you, I am so proud of the fierce warrior you have become, and all the obstacles you have already overcome. I remember getting the text message updates from Joe a year ago as this started playing out and all our shocked reactions to what was happening at work. You are stronger than you know, and you will always have us in your corner! Especially on the hard days like today. Much love from Joy’s Road.