Blog · December 4, 2017

Have A Cup Of Positivitea

I pride myself in being even-keeled. Very little truly upsets me anymore. Looking at the bright side? That’s me. I let a LOT of things go. Ask my husband! He is often more upset about stuff than I am, even when the problem is mine. I tell him to chillax. My issue though is that sometimes I refuse to let things or people upset me for so long that when the proverbial drop makes the glass overflow, I tend to act abruptly over a seemingly little thing. Then again, sometimes, they are not little things at all.

In the past I have had friends that treated me with such disrespect and I let it slide for so long that when I abruptly ended our relationship they seemed stunned. I hate losing friends, but sometimes my mental health is more important.  When anyone upsets or disrespected my children however, I have far less patience. A couple of years ago when my son told me how he felt used and how disappointed and hurt he was over how someone was ignoring him, even though she pledged to him to be his friend, that got my immediate attention. Her response? She badmouthed me in private messages to anyone that supported me and proceeded to “untag” herself in all the photos that I had of her. Hmmm… ok. She treated my son like he was an inconvenience but I am the bad guy? Whatever.

Just last week, when I told someone that I ask Nicky how he feels and I act accordingly, someone told me sarcastically “Pity, you have so much to learn from other EB patients”. But when other EB patients feel very differently about things than Nicky, should I not listen to my son over everybody else??? Shouldn’t how my son feels take precedence? In my book, that’s a resounding YES.
The issue in question was Nicky’s appearance in the TV show “Body Bizarre”. This EB patient was “mad” because, she said, the show was sensational and made just to shock people. Apparently she didn’t see the segment at all, because if she did, she wouldn’t have uttered those words, and the EB mom that came to her defense, wouldn’t have, either. Yes, pity.  The intention of the show is to enlighten and to share inspirational stories, even if the title feeds into sensationalism. No, I don’t like the title either, but if that’s what it takes to make people watch, so be it. I’ve been wanting to get my message out to more people. We need EB Awareness!! One way to do that is via media exposure. This wasn’t the first time you saw my son on TV and it will not be the last. We are in talks at the moment to participate on a feature film documentary about people in pain. Nicky is willing and able and wants a cure. For us as a family, it is crucial that as many people as possible learn about EB to better understand not only our lives, but the lives of everyone that has challenges and issues with EB. The infections, the bandages, the insurance companies refusing to help? Surely, we’re not the only family dealing with a rare disease that had to have a bankruptcy. In the United States of America, you should not be forced into bankruptcy for having had a child with special needs. People need to know that. People need to know we need a cure. Period.

Perhaps there is hope for me yet. I want to leave a peaceful life, so I am getting better at ending conversations where I am treated like a 2nd class citizen. Just last week I tried to make an appointment for an iron infusion for my son. I have my contact at CHLA, a very warm and caring guy that we like a lot. For the first time ever though, this time, when I called, some other dude answered. I told him I needed to make an appointment and he asked me the usual stuff, name and birthdate. “He’s old enough, why isn’t HE calling?” he asked me quite abruptly. “I am his mom and caregiver”, I told him, “he’s disabled”. “Oh”, he said, and proceeded in quite a sarcastic way:”So he cannot speak?”. I let that insulting comment roll right off my back and continued in telling him what day and time was good for us. He continued in telling me that regulations of this and that, HIPPA, bla bla etc. Again, I ignored getting “into it” and I told him I just needed to make an appointment for a certain date. Then he said why didn’t we have an appointment already, and I told him we were waiting to find out about my husband’s schedule and what day the other Dr. Appointment was going to be before calling. “What Doctor”? So I told him. “Have you been here before?” he then asked. Hmmm… yes, I told him, “Only every month for the past 14 years!!!”. When he then reiterated, sarcastically, the fact that he’s old enough to call himself I looked at the phone, and said… “You know what? CLICK.” I hung up. Enough. I will call back today to find my contact and will talk to only him from now on. I never had so much trouble making an appointment, and I’ve been making appointments with all sorts of Doctors and hospitals for 21 years now. As a caregiver and as a mom, I will not allow anyone to treat me like that.

We all need some Positivitea in our lives, let the toxic people go, set your boundaries. Our mental health is so important, especially when our daily lives are so complicated. Ask yourself this: does knowing this person bring you comfort, positive vibes and peace of mind? We can be assets or baggage to each other. Choose carefully. There is only so much we can do for our children. We are not superheroes who have an unlimited supply of power. We are people, humans, like everyone else. We get tired physically and emotionally. We cry. We are lonesome. It’s time to pick our connections carefully.

Love & Light,