Feeling Female

Wow, today is such a weird day.

I am especially emotional, and no, it's not that time again... I don't know what is wrong with me.

First, our second nurse started today and I'm having very mixed emotions. I want my buddy, my Mr. Mumbles, to go with me everywhere. I want to take him with me to the store, to Hannah's school, to the gym, to church, out to eat at a restaurant. I want him to live a normal life. I want him to be okay. I want to be his full-time mommy without someone else coming in to help. I want to know I'm doing right by him. But mostly, today, I want to cry.

Oh. My. Gosh. What in the heck is wrong with me?!!

Two weeks ago, I was feeling pretty good. Hannah's school is awesome. She's doing so well. We also have her in piano and dance and she's loving that too. And we started paying for private therapy sessions for Jenna. I was/am really excited. Watching Jenna with the therapist is like witnessing magic. This girl is so good with Jenna. Today, however, Jenna gave the girl a run for her money and I kept cringing behind my hand as I sat in the corner and let her do her thing.

Other things have been stressful, like the viruses and strep running through our family, and it seems like we can't break free of the sickness/pain lately. And some of it seems totally unnecessary. For instance, per the neurologist's suggestion, we started trying to wean Cohen off his Neurontin (prescribed for pain). This stuff has been a miracle for him. He went from writhing in pain, screaming in my arms, to snoring within ten minutes of getting his first dose. Later that same night, he slept through the night for the first time in months - maybe ever. Shortly after, he started crawling and then a few months later, walking, when previously he would only cower in the corner and suck his thumb and cringe when anybody'd try to touch him. It was so heartbreaking and frustrating at the same time. When the neurologist prescribed this medicine for Cohen, he had his doubts. He wasn't sure if Cohen's screaming fits at night were because of pain or maybe just a paranoid parent's inability to cope with colic, so he basically said, "OK mom, let's try this drug. If it helps him, we'll know it instantly." Yeah, guess so.

So he's been on this drug for a year. At our last appt., the neurologist said let's wean him and see what happens. Well, we saw what happened and it wasn't good. Not at all. He started the same thing all over again. Waking up in the middle of the night screaming hysterically, writhing around in my arms, digging at his body incessantly. I am not exaggerating. So I leave a message for the neurologist and I finally get a call back. First thing out of the nurse's mouth?

"Doctor says to keep weaning him off the medication because it is NOT used for MOODS."

Oh no she didn't.

Not for moods? Not for moods!

Who said a darn thing about moods? Since when is writhing and screaming and digging at yourself like crazy a "mood?"

Oh. My. Gosh. What in the heck is wrong with this nurse?

So I calmly, but firmly, retell her what I said in the message. About his pain. Etc.

She says Neurontin is not for pain anyways. I'm confused, I tell her. What is it for?

Well... it's for seizures and... (a small pause)... leg movement. I could hear the "take that!" tone in her voice. Seriously.

Then why was it prescribed to my kid for pain? And why do all the articles I read about it and all of the drug info I've seen and all of Cohen's other specialists say that this stuff is for NERVE PAIN??? What in the heck? Why would this nurse discredit her own doc's reason for prescribing a medication? Who does she think she is? Doesn't she know parents have much more access to info nowadays? This drug, and its wonderful ability to combat nerve pain, is all over the Internet!

I try explaining the doc's original purpose for prescribing the medication, but snooty-nurse-turned-doctor-wannabe won't listen. Ah, yes. Jenna's birth all over again: some nurses just don't give a darn about the patients they are there to help.

WHO'S PAYING WHOM FOR SERVICES ANYWAYS??? Why, oh why, are these medical people forgetting who provides their paychecks? If it wasn't for us annoying little patients with our annoying little problems, they would be flat out of a job, and who would they be snooty to then?

The nurse hung up on me because I told her she was being rude.

How RUDE! If you know me, you know that I really, really can't stand confrontations. But this girl... I wonder what she would do if she had a kid who was doing what Cohen was doing and someone reduced her concern - and her child's behavior - to "mood."

So Craig calls back and calmly states our case and complains about this nurse. He schedules an appt. for Friday. The pleasure will be all his.

I'm tired. I don't like calling doctor's offices. I don't like going to them either. It's a catch-22. I have to speak up for these kids when they're hurting. It's my job as mom and I love being a mom. I love my kids. But I hate the fragile nature of the human body. I hate disease and sickness. And I really wish the medical community was a little less overwhelmed and a LOT more understanding, or at least willing to listen more. Not that we don't have some great doctors. But they are all way too busy to really pay much attention to one patient. Even the nice ones are so overwhelmed they don't have time to really give a darn.

Now I think I'll go eat all the ice cream in our freezer.

Sorry for the emotional rant. Again.  Maybe it's time for me to go to med school.