I write to make sense of things, or to try and make sense of things.

Even though I say a lot on this web-log blog, there is a lot I don’t say.  I try to stay positive for the most part. I don’t know if I succeed at that all the time. So, I have been stirring this week.

I spoke to a friend of mine about my stirrings and she suggested wait a little see what comes about and then see how you feel. But, I think I need to try and make sense of what I know so far.

I had a clinic appointment last Friday at Children’s. This is where my grumblings come in.

I was tired and it was at the end of the week. My energy was low and even though I ate some pizza, drank some juice, and had an espresso shot, I still wasn’t quite all there at 4pm. I made this appointment because I am flying to MN tomorrow and will have my MN appointment. I needed a new pulmonary function test (PFT) done beforehand. I also wanted to avoid the possible insurance debacle or non-debacle in MN.  I was just trying to be proactive.

My PFT was down 5% – which is fairly significant. Is it a true marker because I was so tired? I do not know. Maybe it was only 3% truly and not 5%?

I now scheduled a PFT in MN, which I was trying to avoid, to repeat it. I want to see if it is accurate and Children’s asked me to come back in a month to repeat anyway.

Just in case people do not know what one does in a PFT, here are the steps quickly:

1. Put your mouth around this mouthpiece. Hold onto the piece for you always remain in contact. You have a nose plug on. Adjust posture, sitting up straight. Some people stand and some people sit. I used to stand and now I don’t trust myself. I get light-headed and I almost tumble over.
2. Breathe normal for 2-3 breathes.
3. Inhale deeply. You can inhale deep all at once or do a step-up inhale. I have tried both and I am not sure which is more effective if there is one.
4. Blow out as fast as you can and as hard as you can for 10-12 seconds usually, I think a few seconds longer.
5. You push, push, push, push, until for me anyway, your face turns red, your heartbeat races, you almost pull a muscle, you start to sweat, and fall over.
6. Take a deep breath in at the end and you are done.
7. Rest for 2-3 minutes or whatever and repeat. You repeat this usually a total of 3-times unless you do an inhaler. If you do an inhaler it is 3-times pre-inhaler and usually 3-times post inhaler. They pick the best score and it goes down in history how your lungs are doing at this time and place. It’s awesome.

For CFers you are supposed to do this every 3-months until you die. If you are not well, you do it more.

This is about as annoying and bland writing can be – but the boring stuff is important.

Back to my stirrings, my frustration, and actual one point this last week, my rage –

The only suggestion, because I do not want to do steroids again, my doctor said was to repeat my PFT in a month. I feel fine overall. I have cough, when don’t I have a cough.

But, there was no conversation, suggestion, inquisitive questioning, reasons or true reason why I am 5% less than last time. Before I go further – physicians and the CF Foundation use this actual test, that isn’t even that accurate but it is the best test they have as a marker for your lung function, for qualifying for lung transplants, hospitalizations, drug treatment, etc. They use this as a marker that is as true and blue as the sky above. It is a big deal. So somehow if you like it or not, it becomes a big deal for you.

My real rage –

The lapse of planning, to have a plan! Pull a tool out of your toolbox and use it.

If you are an athlete and you are timed and tested to run a mile, how you perform is what you did those hours, days, weeks, and months before you got to that field that day.

If you ran a minute longer than you did last time, your coach and you would reflect what you did since the last time you ran, adjust, and recreate a new plan to improve. You wouldn’t just run the same mile with the same training a month later with zero reflection. A good coach would never let that slide.

Why did my doctor just be like “Well . . . since we aren’t going to treat with medicine, we will just re-test in a month and hopefully this isn’t a trend?”

Maybe I was being a bitch. I could have been I suppose. I could have looked annoyed. It’s possible. I still need a plan. I can’t go with, “Well athlete, I hope next time you run you won’t fail, fall, and trip over your own two feet.”

My frustration is – I should not be the ONLY one devising a plan. I created my own plan this week because I am mad as hell. But, I do not know everything there is to know about science; therefore, I need my team.

I said to my Boston doc that doing 3-treatments a day for around 3-weeks is actually quite affective to help my airways. Words on fell on floor. She didn’t answer. I don’t know what that means. I think she was thinking she didn’t know what to do for me. I don’t know.

Oh..oh.. I just want to say – yes, this 5% is significant. But, I can do tons. You focus on the withs and not the withouts. What you can do – always. The glass if always overflowing. It is never empty. Never.

That in itself. I am here and I can do a whole hell of a lot.

Plan so far:
1. Doing the treadmill daily is not an option. I have fallen off the band wagon with that a bit. I also have to do more strength training. I can still do push-ups without a problem, but need to focus more.
2. I increased a neb to my daily routine, at least for now. I am doing a neb in my car on the way home from work. It helps.

If my PFTs are the same, I am not sure what they are going to do. But, I know they will put in a plan in place with some tools.

I will tell you – something happens in me when I think I just don’t want to do this CF stuff anymore. When I am challenged, even if I am half asleep or tired as hell, I will do my treadmill with my neb, lifts weights, add more treatments without a flinch.

The end of the arrow is sharpened.

Yet – I am always the student. I don’t know anything.

So, I will cautiously post this web-log blog. I feel like I should apologize for my tone yet I don’t want to apologize.

The glass is always over flowing. I ask, please give me or allow me or be open enough to open the door, cause hitting your head on it really hurts.