I am not exactly sure how to start this post.

The tug-and-pull between my positive, negative, and realistic sides of me is always at play.

Sometimes you just have to state what is.

So the “what” is that when I was talking to Sheila this last week about my upcoming appointment, then tears just came up from some place.

I don’t have the will to go. I have the will for my life; for all the work I do at home: my treatments, my P90X, my wonderful, fabulous new treadmill that is so awesome. My drugs, my nutrition, doing all the right things are not a problem, literally not a problem. I am happy to do most of these things, accept my treatments which are quite tiring; I can’t remember the last time I skipped one. The guilt and burden weigh too heavy. If I try and trick my mind somehow that it is okay to skip, if I start coughing in the night – which most inevitably I will – I have gotten up at 1, 2am to do my treatment that I tried to skipped.

It doesn’t work.

I-don’t-want-to-go-and-blow-hard-into-a-machine-that-tells-me-my-maybe-supposedly-lifespan. I don’t want to go and try and do this crap anymore.

I have been doing this for 35 years, probably about 32 years that I can remember. I would like this play, this storyline to end.

There is a reason, I believe, people don’t live long lives with chronic illnesses – because it is too much, all the levels of too much: emotional, physical and psychological.

Some ways you would think it is empowering to have lots of control, or drive for your life; in some ways yes, and the other it creates a burden, guilt, and exhaustion.

The expectations of this disease are too much.

I go 4-times a year, right. On that day, pinpointed in time, the pulmonary function test takes a measure of volume I can blow out as fast as I can, as hard as I can in 10 seconds. I do it 3-times usually at one sitting, sometimes more. And just to clarify, my PFT score is a truest indicator how bad an infection is (again, only taken 4-times a year). My doc has said that the team as all tracked their own lung scores and it can fluctuate 7-10% in any given week. That is why 4-times a year is a loose yet closest, true indicator how my lungs are doing. If my lung volume dips too severely, action is required; i.e. oral/inhaled antibiotics or IV antibiotics. I am actually okay with IV antibiotics because it really attacks the bugs at it’s’ core, but much is involved, especially missing work, it is hard on my body after the 2-week course, etc.

But, what is so unfair about this is that my PFT score is dependent AND independent on several factors: if I was able to get good rest; if I have low or high energy day, good nutrition, weather conditions, the week before and the stress amounted and subtracted from that moment, when I did my last treatment, exercise (how hard and how much), the time of the month, at what point am I fighting an infection, antibiotics, etc.

Let’s say you had established a fitness or weight loss plan and no matter what factors in your life you must stick to it. And let’s say it was a top-notch fitness plan, guaranteeing you results – the results you want – but because of external variables you go in and instead of losing weight, or gaining muscle you just don’t stabilize, you actually go in the other direction.

So now the plan is that you have to back-track and try to find when and at what point it went wrong. You have to isolate one factor at a time and figure it out. Then, 3-months later you go back in and find out what worked and what didn’t, if anything. Yet -all along your life is dependent upon this.

You do this year-after-year, always focused on the same goal. And then you find out what routine works best for you, but yet life doesn’t allow for it at this moment, at certain moments in time. Therefore, you have to do what you can, with the energy you have at that time, to go in and perform – still staying focused, positive, and determined as ever because your life depends on it.

It’s exhausting.

When I was young, without people noticing, as I think, I used to whip my nebulizer cups across the room. It felt so good. I used to want to pick-up my machines and toss them, break them into pieces – to be free.

I was extremely physically active as a kid, I believe because I had so much anger in me. Anger I didn’t even know. And then when I let go of it, and found myself on the other side, my life got so much better.

The thing is what makes my doctor’s appointments so important is that they catch things before they get really bad. I don’t have the option to avoid them, to skip them – because historically when my CF started to avoided and stopped going to their appointments, things mounted and their infections took over – and they passed. But you see they got tired of going, cause you GET TIRED! YOU BECOME EXHAUSTED!

And the thing is I have to feel this from time-to-time because I am human and you have to go through the cycles of this shit.

My gut told me my 30’s were going to be bumpy, whatever it was. I knew I was going to be tested. And I believe I could be on a smoother path here for a bit, but my 40’s – fuck, I don’t even want to think.

Something has to change now; I really feel it. My gut is telling me so.

A few things:
1. I miss my care back home. I have a good team now, but back home was better. Minnesota has the longest living CF patients in the US. I was so lucky to be born in Minnesota. I just wonder if they are doing different things back home than they are doing here. Whatever that means, I don’t know; but they provide better consistent care, on so many bases I don’t want to bore you with.

2. I really want my own PFT device. Instead of going into the clinic and take 4 points of time throughout the year, I can isolate factors more accurately and get a true understanding where my lungs are at. It can detect infections on the brink of happening. Now, I start taking antibiotics when I feel I have one (not very scientific). That means it is already happening. My white blood cell count is already high, 13,000-15,000 region; normal is 10,000. My own PFT device can detect infections, change in volume in my lungs, up to 2-weeks before I can feel it. That means I am hitting the infection before it gets to a place where a much larger bomb is needed to break it up.

I can go to see my MD more often, probably I am sure. The standard is quarterly. There is time and cost involved.

So, the cheapest PFT device is $1,100. It’s a lot of money. Insurances don’t cover it right now. I have a hard time getting a $250 air compressor out of them without letters, etc.

A friend suggested a fundraiser. I don’t know. I am toying with the idea. I believe my own PFT device would only do good things. I need to have a conversation with my MD.

3. I do have my treadmill – I love it. So awesome.

4. The new med that is expecting to come out in 2013, many factors surrounding that.

5. I would like low, to middle, normal stress for like 2-years. Not like a few months, but for a while to see what health does, how it responds. Low stress = less inflammation = less infections = higher and stable lung volume. Eustress does so much more – best thing is to be excited and motivated in life.

So, as I see myself sit in that chair, take a breath in and blow-out as fast as I can, waiting for those numbers to come up, it makes me frown and get a grumpy face.

Sheila notices that I hardly say anything in my clinic appointments. Everything is fine; no issues; nothing. And it is funny, which seems weird, I have gotten pretty good about hiding crackles and wheezes in my lungs. How? How can you hide the internal flow of your lungs, you learn how to breathe just right not to be bothered. Because it doesn’t matter, really, how many crackles or wheezes I have – it doesn’t really change anything. I have crap in my lungs; my lungs produce it; there will be shit. Then, there will be less shit later.

With all of this: I must be healthy. This week I believe I walked close to 10 miles around town. I get up at 530-545. I do my treatment; I get my crap together and walk a 1/2 mile to the bus stop. I walk another 1/2 mile from the bus stop to my job. I work for 8-hours then walk 3/4 mile to the T stop. I get off at forest hills and walk another 1/2 mile, part of it up hill. I get up at the top of 3 floors and then I take the dogs out. I carry my 30+ pound dog down the stairs, I walk with them. I do a second treatment. I usually do a P90X work-out or go on the treadmill. I pack my lunch; I take the dogs out again. And eventually my head hits the pillow and I am out. If I was really sick, I could only do maybe a 1/3 of that, maybe. I couldn’t even find the words to put this blog together. Yet – I cough up crap everyday; I cough up green crap, yellow, some clear. I think the quantity has lessened. I am improving from August, but so slow. My Nexium is an essential part of this improvement. I would like to see less green, and less overall.

And then I get mad at myself, cause what in the hell do I have to complain about. But, I have to allow myself to be human; you have to go through the cycle.

A 9-year old CFer is struggling way more than I. Please copy and paste if this link doesn’t load properly:

And this is why I keep moving and grooving. This blog helps process. The idea of going to the clinic still makes me almost want to gag. I must get my own PFT device. I have to keep punching out each challenge. I have to keep my mind focused. I have to keep striving.

And yet tomorrow I will be annoyed that I even wrote one negative thing – because I am here to write when others aren’t.