You know you are tired when you have to take a nap before you finish your responsibilities of the day, meaning body passes out in convoluted and not always comfortable position. It takes the edge off. Then somehow, someway the will of the body says, “Wake up, must do treatment, and btw – don’t forget to eat something with fat to take with your Orkambi.”

I forgot the other night to take my Orkambi with my dinner, second time in over a year. I correlate this to not being on the right time zone and my mind not completely in attached to my body. Am I there yet? Working on it. The result, I was more congested that day. What can I say? I am not perfect by any means.

I have been trying to get rid of the same lung infection since October. I am on my 3rd course of oral antibiotics, combined with inhaled antibiotics as well. I do not know how to answer how I am, because I do not know how I am truly doing. The “Little Engine that Could” is always churning in there and I give my best cheers right along with it. I have been watching some funny stand-up and comedies in general – laughter truly is the best medicine.

Something happened on the way to Patient-vile: I am now on an inhaled antibiotic 365 days of the year.

Tobi – 28 days on/28 days off, routinely. Adds an hour to my day in a snap. Poof! Where does that hour come from, you tell me? If you had to add an hour, find an hour to your day every other month where would you pull it from? It mostly comes from sleep.

When I was in MN in December I said to my doc, “I do a neb in the car, or Tobi to save time.”

“You do? Do people look at you?” she chuckles.

“I don’t know. I have things to do.”

“Does it get smoggy, misty in your car?”

“I don’t know. I don’t think much, but when I do my mucomyst and while I am in it I can’t see that I am. But when I leave the room and come back in, I often wave my hand to clear the air. So – some I imagine.” Resembles life a bit in general I think.

“Only downside, the little air compressor heats up after 30 minutes. You can only use it that allotted time.”

“Sparks start throwing, smoke in the car. People really start wondering what you are doing in there,” the doc waves her hands about.

“You got it.”

Continuing on – since the persistence of the bacterium, my doc suggested adding a treatment onto my off month.

Have to stop a minute.

This means I do not get a month off. That in the past I resisted primarily doing Tobi because of the time constraint and I thought I would build a resistance to it (turns that is false for inhaled antibiotics as they do not pass through your heart and bloodstream). And now comes the time I do not get a month off. What we are saying is my day-to-day treatments change, add, forever more with no said end date.

The airway clearance is proactive but I need prophylactic as well. Cue the cheering section! The idea is to keep the population down consistently for I do not need to rely on oral or IV antibiotics as much.

The fact is how much will CF ask of me? How much can we (my body and I) really do? To fit in with the healthy folks that supposedly walk and go to work amongst us? To be alive, to feel alive?

With absolute and clarity – everything and more. This is not subjective but objective. The end answer – “Oh well, Tessa. Suck it up.” I never got my way in the past. I just try and sneak in my way like a roller coaster slipping through tree tops, like going to Iceland. Well that was more of a punch.

Every time I hear an echo of possibly doing something new I feel my nerves reaching the surface of my skin. I thought this was going to put me over the edge. I do a lot. I mean, I give a pat on my back because I work my ass off. A lot of people work their ass off, but I work my ass off too. I do not believe in complaining as it makes me want to vomit so if it seems as if I am complaining – I will move on fast.

The pendulum clings – because I know I am truly fortunate. I am of privilege. I am in an extreme fortunate position.

So what the new medicine entails is a fancy new machine. List price $1,750.00. It has this amazing ability to administrate the medicine designed only for this machine in 3 minutes. I heard about this machine almost like in folklore. Can you see it? Maybe it is out there beyond the hills, the mountains, the river, but once you get closer to it, it travels further away. But, this time, it landed to me by the lovely UPS.

The trick is, I have to do it 3 times a day. My doctor said clearly that “Two times a day is not sufficient. In studies, the third is key. Doing just two doses is like not doing it at all. If I feel, as some have, the third is just too much, then let’s not do it at all.”

The device is called Altera. A rocket. It comes in a nicely compact carrying case and it requires refrigeration but nicely states inside the box that if needed to bring to school or work, non-refrigeration is Okay, just do not have it a room temperature longer than 28 days. That was a sweet topping.

The rocket has infiltrated into my work life. It must be placed on a flat surface in order to work correctly. It has delicate pieces I do not want to drop. The doses must be at least 4 hours apart from one another. The rocket is silent. It should be for that price tag.

The not-so-sweet addition to this is I must clean it every night. I must give it a bubble bath in distilled water and soak the main gear in alcohol overnight. Actually in the instructions and video it says to clean after each use. You kidding me? Then, my respiratory therapist said just clean it once at the end of the day. That she has not seen any bacteria grow that fast and people have not had problems.

Again, I am fortunate. I have a fancy BMW rocket, Orkambi, and a medicine inventory that is spectacular. I have a Vest that yes, I paid some bucks for. I have three air compressors.

But with all this – I need to break up the energy. I am learning to play the banjo. A much loved instrument. I feel as if children literature is possibly my writing genre, besides poetry. I am taking classes and am going on a children’s book writing retreat this summer. It is going to be so nerdy – I love it.

I am working on my non-profit, which maybe I haven’t touch upon yet. In time, I will.

BTW – in Iceland my new hand massager died. It is not fancy enough to have a built-in voltage adapter, probably like a hair dryer. Thank goodness I brought my handy dandy gigantic Doxy vibrator from London. The next time I am in Europe I am going to order a UK massager from UK Amazon. They won’t deliver to the US. The vibrator works, but the hand-held massager is more powerful.

So strength.

Endurance.

The will not of my own.