So Much Time A-wasting

Being that I've been running, errr.... attempting to be a runner for almost 2.5 years now. I've grown accustom to using a stop watch or some sort of clock to track my time. After-all tracking one's time when running is important. It gives you a lot of information about your workout or run. Things like average mile per hour should begin to improve the more fit you become. Anyways, you get the point, time is a good measurement or benchmark and can lend you a lot of information.

The amount of time we CF'ers spend doing treatments is huge. Particularly when you start to calculate it over the average life span of a CF'er. We're talking months and even years. Its crazy.

A CF'er gave a speech then turned it into a blog post about this very subject: Time. It's worth the read. 

Run, Sickboy, Run - Cystic Fibrosis and Exercise: We Need More Options!!

"Any treatment that I can take that isn’t a huge burden on my time really excites me. Any potential treatment option that I can take that can potentially “give me time back” excites me even more."

The main point (from my perspective) is that we, the CF patients, need more options that not only improve quality of life but aren't time consuming. Most who haven't been around a CF'er during treatment probably can't even begin to comprehend just how much time is used up on treatments. We (CF'ers) for the most part are willing to give up precious time for a better quality of life. In his post, he demonstrated just how much time his treatments take him by using a stop watch.

How have I never thought to do this simple experiment? I'm inspired to do it now! I'm sure his treatment times won't be too far off what my will end up being but you never know. His regime might be less extensive as mine or vice versa.

The other factor is that when we're sick (haha!), I mean when our symptoms are exacerbated the amount of time doing treatments greatly increases. With out doing the time experiment I would estimate double the amount of time.

Phew! That's a just crazy. No wonder I'm always on the look-out for new activities to do while doing treatments. I get bored. I need stimulation during those times to keep me from focusing on how long I've sat in one place puffing away on a nebulizer. I like to be busy and this stagnate time frustrates me. I think of all the things I could be doing or that need doing, yet I sit on my tush puffing away. 

I think we're still a good many years away from life without treatments. We're making amazingly fast progress but anyone who has CF more than likely has conceeded that this time is just par for the course. 

Anyone have any good ideas for activities that are not apart of the obvious like reading, tv, etc?

~Doodlin'

CF Clinic Update

Last Tuesday was CF Clinic day for me. The verdict was both favorable and unfavorable.

However, before I go into all the details I just want to publicly announce (again!) how amazing my care team is. I could not be in such great health without them. They are some of my biggest supporters and they always tell me the truth; good, bad or indifferent. They have helped me navigate my insurance company when I was single, fabulous and broke. They have gently guided me thru some of the hardest years yet in my life. They have been a source of support for B, to help him understand the complexities of this disease and to offer words of wisdom when he most needed them. The folks who will take their places upon their retirement will have some very large shoes to fill. Just saying!

The unfavorable:

Let's just get it over with it. I have lost weight. Even with the dang feeding tube. Enough weight to raise a few eyebrows. I hate scales. I hate how so many live their lives as slaves to the number and how so many wrap their self-worth up in what the meter reads, so we don't have one in our home. Until Saturday. Ugh! However, I knew I had dropped a pound or two just by the way my clothing was fitting lately but not nearly 10 lbs. That is a lot for me. The worst part is putting those pounds back on is an upward hill to climb. Yes, I love food. But I hate doing anything that feels like a job and consuming 3500 calories daily becomes a job or worse a chore. 3500 a day will only help me maintain, therefore, I need to find ways to throw in a few more calories to recooperate the lost weight. I suppose I could simply just do the feeding tube more frequently or all day for that matter, but the goal is either use it only to supplement what I eat or to allow myself enough time to "bulk up" thru the feedings and be able to sustain a healthy weight by eating alone and remove the g-tube, or toobie (a cute little wee-one used this nickname). Well, I don't think either of those options will be occurring anytime soon. Instead, I will be adding more supplements to my real food and increasing the calorie intake (nearly 2000 calories from 1500) per feeding tube cycle. This also means adjustments to my insulin and digestive enzymes because of the increase. Fun, fun!!

The favorable:

PFT's were again astoundingly awesome. Awesome for me that is. FEV1 was 79 (normal: 80-120). There are other numbers that are looked at but I'll save you some time  and give the synopsis; my lungs are doing well. They are actually improving, at least from what the numbers tell us. After the Pulmonologist gave me my print out of my results I had a few folks come in and ask me what my "secret" was and my only explanation is the running and being complaint with treatments. Running requires usage of the lungs and therefore they are worked really hard while running. I have the Vest to help on the days I don't run but I am telling you its the running. I can feel the difference. I move more mucus during and after running then by doing the Vest. The Vest moves some mucus, but those pesky plugs way down in the lung come up more frequently with running. This gives me the ability to take deeper and deeper breaths and the medication from the nebulizer treatments can then get deeper and deeper to help prevent damage and maybe even allow a small window for healing and/or rebuilding of healthy tissue. I don't know but I know running is working. It took nearly a year of running to see any difference in my PFT's. So, CFer's don't give up, it takes some time.

I'll leave you with a video of the actual PFT session that I scored my 79 on.

~Doodlin'

"Nearly Normal", ummm....what?

Me: "Say what?"

CF Doctor: "Your lung function is stable, and nearly normal."

Me: What?!

CF Doctor: "whatever you've been doing, even with the ebbs and flows of compliance, has been working for you."

This is a snippet of my conversation at yesterday's CF Clinic appointment after doing my PFT's. I am blown away. In 40 days I will be 30 years old with CF and quite possibly the healthiest I have ever been. My stats on 5/15/12:

Blood Pressure: 114/70
Pulse: 70
Weight: 123 lbs
BMI: 20.87 (I have worked SO hard for this!! Yay, g-tube)
FEV1: 74% (80-100+ is considered normal; I ranked 74% of woman my age, height and whom are healthy)

I can tell you this, I will not stop at "nearly normal" I will continue to push the boundaries of my health. I will not rest until I am "normal" until CF is no longer. Beyond thrilled is an understatement.

Me, nearly normal!!

~Doodlin'

Wordless Wednesday: Crack of dawn treatments

Bag-O-Motivation

December and now January have proved to be incredibly trying months from many different angles of life. Surprisingly my health is not one of those aspects. So, today, when I got a large bag with my name on it that instructed me to open one gift after doing my nebulizer (breathing) treatments each day as motivation, you can image my joy. In fact the joy was so overwhelming that it overflowed from me like a waterfall.

You know I get many many words of encouragement, which I love and will always need from time to time. But this gift was so thought out and so perfect as a jump start to gaining motivation or the reward factor of changing a schedule to accommodate the treatments. Even though I am almost 30 years old, I still need to be rewarded. And let me tell you its so much more pressure (positive) to earn a reward from someone else, rather than me giving myself the reward. I feel obligated to follow thru on my end of the bargain you'd say.

My first gift was a lollipop and a little printed "you can do it" message. While I was doing my treatment tonight, I thought about all the parents who attempt tirelessly to get their children to sit still and do their treatments how great something like this would be. A simple gift to pull from a bag if one does their medications is marvelous. It could be a sticker, piece of candy, a piece of change to put in their piggy banks (dime or a quarter) or whatever your child would enjoy. I also think that this idea works for any adult who maybe going thru a rough time.

Do you know someone who could use a few days of encouragement or motivation? Maybe give this a try it sure warmed my heart and put a fire under my backside.

Thank you Nancy for this wonderful gift.

~Doodlin'

The Vest

I have decided to film me doing a few of my daily treatments and giving an explanation of what each treatment is. This first video is of me doing the Vest and it turned out much better than I thought. I really didn't think about how much vibration would transfer into the video being that I was holding my cell. phone to film it. You get to "see" first hand what my eyes see during the treatment. As you'll find doing things like reading or even watching TV can be difficult.

Please be kind this is my first video attempt:

~Doodlin'