I have hammering out P90X and P90X2 months, and have been doing awesome with it. I have been building muscle that I have never been able to do – but I need to do up the Annie.

I read my last progress note, and even though I am in the “normal” range for my PFTs, which I think is in the 80 some percentile, but I am not even sure, because on my PFT report it is 90%, but my notes say 80 some percent. I am very confused. Part of me doesn’t want to ask, because I would like to think 90%; even if I am living half-way in denial. I can’t do everything.

The note says I still have a deficit of 400cc of lung volume compared to 2010; better than 600cc like it was.

I would like to somehow to cut that in half. I know the lungs can heal, and continue to heal over time, to make this happen the green stuff needs to stop.

Something that kind of dawned on me, I have not been having my mucomyst in my nebulizer for almost a year now; this thins my mucus while my hypertonic saline helps kick it out. I have been trying to get it, and it has continued to be on back order. The pharmacy can’t get mucomyst and no one knows why or when it will return. I think because they don’t really make money off of it.

It kind of scares me because if I have a near bowel obstruction, mucomyst has been the only thing that helps me. Especially at my terminal ileum where I had a bowel obstruction when I was born, and I am sure there is scarring and narrowing.

I put a little bit in a cup, a little root beer, Pepsi – has to be a dark soda – and I swig it back like a shot. Most disgusting crap ever! When I was little, I used to take it routinely after school every day. No matter how many years go by, I still almost gag on it.

So I emailed my nurse to see if I can try something else to thin my mucus. I think there are other meds, I know there are. If they work, don’t know.

That is step one.

Step two: Running. I wish my knees would keep up. It is best for my lungs. Once every week to two weeks, because my knees can’t take it.

Step three: Swimming. I really need to do it.

I am concerned about developing E.T. fingers. My doc says I have mild clubbing – great. I have been staring at my fingers for years, ever since I found out what clubbing is or I say E.T. fingers. Each visit, the doctor always checks my fingers. Your fingers are a good indication how your lungs are truly doing; if you are getting adequate oxygen.

Also, they used to pinch my fat in 3 areas to see if I was losing “healthy weight.” They would measure my thoracic cavity: width and volume. And when you lose your oxygen, your lungs begin to barrel. My lungs barrel a little. Your lungs kind of shrink, not expand. When you see people on oxygen and they look like they are trying to catch their breath, it isn’t from oxygen starvation necessarily, it is because they are suffocating from the carbon dioxide inside their lungs. The exchange of getting air in and carbon dioxide out becomes difficult, because your air sacs are dying or are dead.

And you are supposed to breathe with your stomach, not your chest. It shows core strength. And when it becomes harder to breath, you will need those muscles to stand up straight. Men tend to breathe with their stomachs more than women; women breathe more with their chests. I pointed out to my physical therapist that usually women don’t like people staring at their guts, unless they have a fit stomach. It is much harder on women to get strong guts too; they just have the muscular structure like men.

So – clubbing, E.T. Fingers. I think I just have fat pads on my fingers, not clubbing. I am always living about a quarter in denial – but really who doesn’t.

Whatever gets you through the day right?

SO:
1. New med, maybe?
2. Running
3. Swimming
4. P90X
5. Chest therapies – of course, twice daily
6. Yoga

They say CF is one of the most labor intensive diseases to manage – I agree.

CF equals exhaustion for me – pure and utter exhaustion. But, it means determination, strength, will, defiance, saying “I will do, be – bust the shit out it – because there is no other option. Yet, yet! Shake hands with it, learn from it, it is not my enemy – I do not have anger towards it; it has been the best teacher. Shaking hands and working with it, not against it, I believe the sole reason I am still standing. It knows everything, today, in the future, in the past. You can’t out-run it, out-learn it, out-beat it; you have to take its’ teachings and Bring-it.

But, then if I could knock 200cc down or I should say gain 200cc – that would be awesome. I would then defy what the docs say again – that exercise can’t improve your lung function. I say Bollocks! Some believe the lung tissue can’t heal – I have nuclear med scans to prove otherwise. And you say someone with 2 copies of F delta 508 can’t achieve what have – Bollocks!

And just to say, CF still knows all; I am just biding by its’ teachings and working my ass off. I just want to continue on the steady stream upward.

You don’t want to make it mad . . . I am human; I know nothing. I am just on this journey striving to know something.