Friday, February 11, 2011

Fighting the battles

I want to first say that this is a very emotional post but I think it's honest and necessary for me let out.

Some days I want to fight like hell to combat these disorders. Then there are days when it seems to much to bear and I wish God would just let me go, take me. I almost died five and a half years ago giving birth to my precious daughter Madison. At first I was panicked knowing I was going to die, desperate to live, begging for them to do something, anything. One of the young nurses prayed with me lying there waiting for the doctor to figure something out. They'd already tried everything they knew to do and nothing was working. I'd already lost all of the blood in my body which they'd replaced and then some, 9 pints. Finally the doctor asked me for my permission to try one last option, a hysterectomy. It was a risk, even more dangerous as it would cause more bleeding. He told me that I was already dying and that I may not survive the operation. Even knowing that I said okay, I was done fighting. As they were wheeling me into the ER I suddenly felt calm, peaceful, unafraid. It was a peace that is extremely hard to describe. I was surrounded by a bright light, everything was white. It wasn't a blinding light like the kind that hurts your eyes, more like everything around me was just no longer there, it was beautiful. It was then that I heard a voice. It wasn't an audible voice like someone actually talking to me. I didn't hear it with my ears, I just heard it. I heard the simple words "it's not time". Then nothing. When I do remember opening my eyes I was in a regular hospital bed next to a glass wall. The first thing I asked was "what day is it?". My husband, who was sitting beside my bed told me it was Tuesday, 3 days had passed. I was alive.

I no longer have a fear of dying. What I'm afraid of the most is the impact on those I'll leave behind. My family, my friends. I don't want them to hurt, to experience the pain of my passing. I know I may not die anytime soon but there are days when the physical pain and suffering is so severe that I wish I would. I just want relief. I don't want to suffer. But yet... I'm not done. I don't feel that I've yet accomplished what I was let live for, even if I don't know what that reason was. So for now I will keep fighting until the day when that voice finally tells me "it's time".

Thursday, February 10, 2011


My physical pain is becoming more excruciating every day. My skin hurts, I can't stand my clothes touching me, the blankets on me at night. I can't take a shower even with the lightest spray, anyone touching me, especially to rub my arm or back.

Eating is becoming more difficult. Most foods hurt going down then cause stomach and abdominal cramping. I'm losing weight I'm sure. Even soft foods, they go down but the cramping starts. Nothing tastes really good anymore but I'm so hungry. I eat even knowing how much I'll suffer but it doesn't seem to be enough. Constipation is a major problem. Taking all of the vitamins and minerals is making my esophagus very tender and sore. I'm pretty sure this is all due to the sjogrens and IBS.

My muscles cramp. I'm pretty sure a tendon in my ankle has torn after a severe cramp one night, too much walking aggravates it. The back muscle cramping makes me feel like I'm having chest pains, it radiates.

My bones hurt. Everywhere.

My joints are sore and very tender to the touch and more with use.

I'm not sleeping well, waking up almost every hour during the night. I can't always fall asleep during the day for more than an hour. I'm so tired.

I'm emotional. Sad, scared, confused, forgetful, angry, numb, lost. a body that's broken, worn out, attacking itself. No one should ever have to suffer this way. No one.