If you should ever need to go to a hospital, go to a Children’s Hospital if you can. 

I have not written in a while because of many changes in my life. I am back.

Today was my first appointment at Children’s Hospital in Boston, my home anchor. I think everyone should be able to go to a Children’s Hospital. The friendly colors, the staff that says, “Excuse me,” “May I help you?” The characters, cartoons streaming, the children’s books, the smiles and then sometimes not smiles.

I observed a couple years ago that all waiting rooms are like “time-outs.” Adult often time act no different children, and at times worse. It is like adults have this screaming child in them and that now that they are an adult, they are allowed to act as they may. No one to tell them any different. That is why I think kids are better, they just are.

My adult-child in me, in absolute truth, severely dislikes going to my clinic appointments – except to my MN appointments.

I HATE doing my PFT’s. I hate them because they measure, in uncertain terms, my approximate life span. I also have to work for these test results. My heart races, I blow out as fast I can, while my face turns beat red, and just before I am about to pass over, I take a deep breath in. I sweat, I put my heart and soul in it, and after three tries the results may very well be horrible or they may be great, one never knows. If I am tired or not feeling well, the task becomes that much more difficult.

I am over it. I have been over it and everything that has to do with CF for about 30 years now.

But, I want to tell you something, CF does not care what my feelings are. My feelings are irrelevant. Of course, they are, but truly they are not. It does make any difference if I want to do my treatments or I don’t want to do them, they still must get done.

It does not make a difference if I don’t want to clean, boil, rotate my many nebulizer cups. Or rotate my medications I need from one of my four pharmacies. Which medications prescriptions are due to expire, because you do not get a prompt with a medication needs a new script, it just doesn’t get filled. Which ones need signatures when they are delivered, and which ones don’t? Which ones come from UPS, because they will scribble my name, or fed-ex, which they do not?

The only thing I can do about any of this is to remain positive. I have to remain positive towards the very thing that will more than likely take my life. 

How do you do that? I am happy for today. I always happy when I am not in physical pain. I also leg go, let out, release all that anger. Stop resisting, stop trying to think I know more than my disease, because I do not. We are only students and we will only ever be.

You do what anyone can do – I cry, and I have cried a lot in my lifetime. But always the next day it seems brighter and you feel more relaxed. My mind says, “Okay, we can this.” And somehow I do. We all do.

For years especially when I was very young, I cried for the wrong reasons and had intense anger inside of me, which I didn’t know. Now, I cry for the right reasons and do not have that anger inside me. Right road, right feeling.

What helps is encouragement. My respiratory tech today was awesome and I thanked her what great tech she was after doing my PFT’s. She asked if I wanted coaching, or no coaching, how much if any. I said I would like some coaching, but not like I am winning the World Series. She got it perfect.

She said, “Push, push, push, you got it, you are nailing it, go, go, go, and release.”

Literally, that is all you need in this life. My adult-child responds to all of this positivity. The one that wanted to be adult, and the one that wishes things were a bit easier at times.

You know what else great care is –  preparing for the next step. I had to go down to radiology, but before I went, they called the receptionist to make sure no other CF patients were there. This is procedure. Fellow CF patients are like ghosts to each other, except over the internet. The risk of cross contamination is too great and we have to avoid each other literally like the plague. We carry such dangerous bugs that it could be costly for the other CFer. We are safe to be around healthy people, but not fellow CFers. It is quite odd.

My doctor: we actually met 12 years ago when I first moved here. She was quite nice. She got it. Smart woman. She filled in her own blanks.

The entire visit went extremely smoothly, could not ask for a better first visit.

It does sadden me that my lung scores aren’t higher than they are. The only thing I can do is get on my treadmill every day with my neb in my mouth, and get to it. I mean every day. Exercise hands down is the best “treatment.”

We all know each and every thing that I have said here. Sometimes flushing it out and allowing my fingers do the typing makes everything easier.

Many blessings to you.

Addendum: If I have these lung scores for the rest of my life, the next 40 years, I will take it. Strength, endurance, and all that good stuff. I always leave open to what could be, and the endless possibilities that cannot be named.