Gorgeous Day

I watched Five Feet Apart last night. It came out on digital this week. I watched it with my headphones on like a teenager. I just wanted to take it in, and not miss anything.

It is like Grey’s Anatomy times five – meaning, the medical accuracy is pretty spot on. Claire Wineland and the director worked together on this movie and it is dedicated in her memory.

The emotional level is definitely there as well. I had tears streaming throughout. It kind of reminds me of the movie wonder where you don’t have huge bouts of sobs, but the emotion swells up in your heart, almost like you are squeezed, and then your tears are almost pushed out and down your face.

It is a teenage story – so the “drama” of teenage love is there, but it probably has to be there in order to attract an audience. Some super sweet moments, done really well with the music.

It is almost enlightening or perhaps warming to see a movie tell a story that hits at the truth as well. Just calls it out –

I had a couple hiccups this week. One is my Altera machine which means rocket, or relative to space. The shape of the nebulizer looks like a miniature rocket. The science nerds like to have fun. Well – the machine delivers one of my nebulizer antibiotics and it keeps breaking.

The scam: when you get this thing it is retail $1500. The company does not tell you, and I could not find it anywhere in the information it came with that it is has a 2-year warranty. I found that out from the company who distributes the med.

Insurances only pay for it once – that’s it. Comparatively, my insurance will pay for a new air compressor every 5 years. On a side note – I just buy my own air compressors because the price point has come down better than it used to be and the insurance only approves of one that the CF foundation does not recommend.

So – the Altera machine keeps on breaking, meaning the plug-in does not work. I can put batteries in it, but the 4 double AA’s do not last that long. I am lucky if I get 2-weeks out of them. I got a replacement cord and it only lasted 2-weeks. What cord only last 2-weeks? None.

It is the input of the cord that is malfunctioning or is old. And when I used the new cord it lit up, went dark, and lit up again. It has done this several times. The thing is dying. The thing needs to be replaced. “We will send you out another cord.” Seriously.

The date in which I got the machine keeps changing. It depends on who I speak to – what kind of records are these people keeping? It seems to coincide with my employment status, my insurance origination date; but that hasn’t been consistent either. And if I try and correct them, they just repeat what they just said. “Our records show . . .” It is almost like a miniature form of gas lighting.

This is what it comes down to – the discounted retail price is someplace between $900-1000, be prepared to cough that up.  Or I feel as if a smackdown is coming – replace the dang thing.

Super positive notes –

Today is an absolutely gorgeous day. I am so happy to be alive and well.

I am also extremely thankful I can gain weight. A lot of CFers have a lot of trouble with this. I hear more and more that people have g-tubes and they struggle to stay in the three digits or healthy three digits.

A few years ago, my nurse at MGH looked at me concerning or just very concentrated. She asked me three times if I take any extra-curricular medications or drugs. I believe she was pointing to marijuana or a form of it.

I said three times, “No.” I have never taken anything. But, she just kept staring at me. Then, I thought – maybe I should be taking something. Do I have anxiety? Do I need to calm down? Am I coming off as if I am agitated and I need something? I feel as if I am rather calm, but perhaps I am not. So, that’s an interesting place to be.

I recently asked a nurse friend of mine and she said “It’s because of your weight. You are healthy looking. You have some extra muscle and fat, which is good.”

I do have a little extra chub-chub and I could gain some more – which is really cool. The new med contributes to that ability. My last three checkups have been the exact same weight, straight across. I actually thought I gained a couple pounds over the semester eating while I was writing – I usually snack because my brain just needs the calories. Then, I cut back a little because I like a particular weight for functionality and the docs watch you like a hawk. But, I could put on weight.

The only time in my recollection that I was ever angry at Dr. Warwick was when he asked, almost insisted on me seeing a nutritionist when I topped-in at 130 pounds. Dr. Warwick was tough, just to say. I sat there stoic, said nothing.

I never met with the nutritionist and lost “the weight” on my own. He only ever followed-up at some point by saying, “Your weight looks good.” Same response. Nothing.

Fat is good.

Gorgeous day to be alive. Enjoy!

May your heart always lead you home.