Thursday, May 5, 2011

Each Day is a New Day

The last time I wrote a blog here, things were very different. Now, I come back to screen and keyboard, shiny and new. I see that the sun still rises, gravity still works, and I relish the love of my child. Our child.

What if she was never born? What if the obstetrician had dropped her in the operating room, that crisp, light blue tile shining. Shining but we know that all over the wall, microscopic speckles of blood dot the room. Sprinkles of old puddles on the floor. How much blood could have been lost in one day? One year? Here I was, having a Cesarian Section and my own Estimated Blood Loss (EBL) would be about 500 ml today. How many lives started in this room? How many lives changed the world?

What if I was never in the car accident with her? Would I still be baking cakes and cookies, instead of staring at the ceiling? Would she be different? Separation anxiety must take a toll on our children. I am quite aware that the field of Child Development has mastered some nicely wrapped up evaluations of new-born babies, toddlers, preschoolers, tweens, teenagers, and people. I am not quite aware of how much emphasis has been placed on the toll our children take when there is a loss of a parent. In this case, "Mom, why do I have to be the only child in my class that has a mother who is disabled?"

"Me strong girl!" I retorted with a smile. And with the confidence and jubilance of the Holidays. As if festive Christmas trees adorned the room, I could almost smell the evergreens. I could sit back, relax, and really smell them. The scent came to me as a wisp of a broom, throwing a brush at me from only a foot away. Some scent, then pure scent, then just a glimpse of it and...did it ever exist? "Me Strong Girl!" In my mind, I tell myself that God is with me. With God, all things are possible.

But I can't help but think of how much childhood she lost. After the car accident in 2006, I was a patient in neurorehabilitation for weeks. Actually, yes. I had to learn to talk again. I had to learn how to walk. The best I could do then, was with a walker. Mal de Debarquement Syndrome caused me to swirl like a seasick French sailor coming off a ship. Woosh! I'm still unbalanced! But I am not beaten. And I am not giving up.

So now I lost 10 pounds from vomiting to no end. Ha. "Ferrante Syndrome" again. "Here....she's coming! Look down. We never know what she is coming in for! She's back!" Funny how one can not keep food down if gastroparesis exists. Just like diabetics get gastroparesis from autonomic nerve damage, so do people with dysautonomia. Who was to know? Vomiting for a couple of weeks....and ending up with a K of, did my body feel out of balance.

So they taught me how to swallow slowly, how to chew one chew at a time. No talking while chewing. Sip a drink after each swallow, to clear the esophagus. And I follow directions, and wala! I'm not throwing up any more. So why should I have to go in for 'urgent testing'? Why does he want me to go back to the hospital 5 days in a row? Pestering me. "Sure, sure. I'll go."

And I knew I was lying as I said it. I had no intention of going back to see a doctor. Nope. Let me chew my food and swallow it by myself for now. Leave me alone and let me be.

And the chest pain came. It came as I was on a patient table, in a patient room. I was clammy, and my palms were wet as little rivers of sweat outlined each line in my hand. Boom! Pain! 10 out of 10 pain. Like I'm having a baby and my uterus is contracting at 10 cm dilated. Exactly what it felt like. Nitroglycerin sublingual, 2 full squirts.......pain goes to a 9. Ten minutes later, I am blind. I am blind as to who is nearby, what color the walls are, I am just oblivious. All that encompasses me is pure pain. Ripping at my mediastinum, cranial to caudal. Felt like an elephant was sitting on my chest (and no one was helping it get off!). Screaming for help, I saw the tears in my daughter's eyes.

I saw them and I thought to myself, "I should straighten myself up." "I don't want to scare her."
ER Personnel telling me to be quiet. Telling me, "Shhh! The other patients can hear you!" I am thinking, "What kind of an ER is this? Nothing for pain in 25 min; no labs drawn for 30 min, until I asked whether they still take labs to rule out an MI. Wondering how come the nurse across my room was putting her finger up to her lips to say, "Shhh!" to her patient there. And guess what? The patient had a broken arm, was elderly, and was screaming in pain. What kind of place is this? I feel like I'm in a haunted house. People screaming and personnel saying, "Shhh!" It was as if they did this all the time, to all the patients. I was furious.

So I asked for help and some one came to my side. I'm still screaming in 10/10 pain, and tears fill my eyes. My ear gets soaked from my tears. To myself, I say, "Well, at least I'm not dehydrated"....since my body could produce tears. And that made me feel better.

"Who are you to me? Why don't you go talk to them? Tell them I need something for pain. And if they tell me to shut up one more time, I'm going to scream!" Go! Go! Go! Don't you care? Aren't you going to stick up for me? Why are you so passive?" Geez, I need some one else to be here as my friend. Where is my mother? Where is Gwen? Where is Terry? And Jody? I felt as if I clamored to get another person in here who could help me.

Eventually, I left the hospital with esophageal spasm as my primary diagnosis. Swallow hard the wrong way, and multiply that by 100x. Loss of synchrony, peristalsis, or rhythm. I thought it was my heart, and I thought I was going to die of a heart attack.

It was the esophagus. So, now my swallowing and digestion had to proceed slowly and deliberately, as if I was swallowing mouthfuls of chipped glass...slowly.

And that's how I eat, now. Simple fix. Can eat almost anything I want to eat, so my quality of life is good. No vomiting for about a week, now. That is my quality of life, too. So I can eat with the lil one, sing with the lil one, and play with the lil one. God knows everything. I'll do what I need to do, and take care of myself. I have a long life to live.

And I want to live my life with more focus, more determination, more exhibits of my strengths and talents. And that is all that any person should be able to do. Just be left alone to live in harmony without so much drama. Drama in the ER is one thing, but no more drama here in the house. :-). That is my fondest wish. Peace.

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