Thursday, January 8, 2015

I've never done this before!

This afternoon, I did something I have never dared do before.

 I stood up to a doctor.  I can rant and ramble on a blog or to a friend but I never say it to a doctor's face!

I think I mentioned that our family doc had implied that I had just set up a little black cloud over our house and we just mope around depressed.

Well, today, I had to go back down to see him so I could get a cardiology referral.  I decided to make the appointment under Sam's name but not take Sam.  It's not like he needed to be physically checked and he's getting pretty worn out with doctor appointments so I just went alone.

The nurse came out to the waiting room and called his name.  I explained that I didn't actually bring Sam with me and why.  She was a new nurse and got all huffy that this isn't how things work!  I was really calm and said, "I think the doctor will understand."

"So, I have no one to weigh and get vitals on?"
To try to break the tension, I said, "Well, you can weigh me if you want." She didn't find that to be amusing.

She put me in a room and then a few minutes later came in and said, "The doctor said he knows why you're here and he will call in a cardiology referral if you tell him who you want to work with."

"Well, I appreciate that but I really just wanted to talk to him for a minute."

Then came the eye rolling, the attitude..."He just said he would do it!"

"I made an appointment and drove all the way down here, I just really need to talk to him."

She left, practically slamming the door behind her. Sheesh!

When our doctor came in, I apologized for making her angry.  He told me not to worry about it.

I filled him in on how the pulmonologist lied and treated me and now I was just confused about what cardiologist to go to because I don't ever want to be treated like that again.  I'm not a cranky, difficult person. I just need to be heard and validated.  I also told him that it wasn't fair for him to assume that I am dwelling on the fact that my kids have a fatal disease.

I explained to him that we laugh, every day!!  Every single day, I take it upon myself, regardless of how I am feeling to make sure that the kids end whatever kind of day it was, on a positive note.  I let Sam go to his gym class even though I would have every right to keep him home.

"Every day is hard for me.  Every day, I have to let my kids do things that scare me to death but I keep my mouth shut and I cheer them on, encourage them and even facilitate their goals and dreams.  No one sees just how hard it is because I keep all on the inside.  No one sees how scary the past two months have been for me.  Every day, I see people in bad moods, frustrated moods, upset moods, sad moods and it's okay for them to feel those things.  In fact, people rally around them.  My question to you, is, when is it okay for me to have a day when I just can't be strong for one more minute?  When do I get a day like that and not have people jump all over me for being 'depressed', 'discouraged', 'whining', 'complaining', 'making mountains out of molehills' and 'not encouraging my kids to live life to the fullest.'  When? Because you did to me, the other day, what everyone else has done to me."

I couldn't believe I actually said all that but I'm glad I did.  He admitted that he doesn't know what life is like at our home and sometimes, he just doesn't know what else to say because he's scared too.   He said when he has to see what we deal with it breaks his heart and he goes home and hugs his own kids.

It was probably the best doctor's appointment I've ever had.  We communicated and we came to an understanding of each other.  Kudos to him for staying engaged and talking it out. I really appreciated his honesty.

It's been quite a week.  I've had to do way too much advocating and that is not something I love to do.  It completely wears me out.

Ahhhhh...well, cardiology referrals are in the works.  I was glad to our doctor for helping me find a good one.  There are some decisions I just can't make anymore so when he said he would take that over, I was so glad!!

It may still be a month or so before we can get in but at least the plan is underway!  That's something.

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