If Time = Money, I'd be more Wealthy

I have a little over an hour of time added to my days now! How did I accomplish this you ask? I didn't switch to a different way of telling time where there are 25 hours in a day. I got a new nebulizer machine. Actually it's a compressor. I noticed that several of my fellow Cysters and Fibros had the same machine. I read several reviews on various CFer's blogs, did some research of my own on the internet and decided to purchase this specific compressor.

My treatments used to take me over 2 hours a day and I wasn't getting the full treatment. I often cut each treatment short so I wouldn't spend 2 1/2 hours sitting taking treatments. With my new compressor it takes about 30 minutes to complete my treatments on Cayston months and about 45 minutes on TOBI months. Each treatment runs until it is BONE-DRY! I'm getting my full treatments and have cut my treatment times by more than half! I couldn't be happier! In the CF world, this is HUGE! We spend so much time doing treatments and exercising, any way to cut down on that time, gives us a more normal life. This means more time to spend with my boys! More time to exercise! Less times that we as a family will have to show up late to family gatherings, etc. I'm ecstatic! So, if you're spending a long time taking treatments, I suggest taking a look at your nebulizer machine/compressor.

By now you're probably wondering what machine I purchased. Ok, I'll spill the beans. I bought an Invacare MOBILAIRE 50 psi compressor. To read more about it, click on the name.

Unfortunately, my insurance couldn't get me one. None of the companies my insurance gets equipment from carried the compressor. The Invacare website has it listed around $400. I was able to find one online for $275 with shipping included. I couldn't be happier with it! Worth every penny!

Just a little fyi for any CFers that read my blog. I love it, and feel obligated to share the knowledge. Hope it helps!

Treatment Time: Make the Most of Each One

Since my stomach surgery, my lungs have been struggling. Really, for the past year or so they have been struggling. I added a second set of treatments a little over two years ago along with adding more treatments with each set. I've feel I've maxed myself out as far as treatments are concerned. Two sets a day, with working full time and taking care of the twins feels like my days are jam-packed. That's not including exercise time. I've been trying to think of what I can do to help. Obviously something has to give. I have to get my lung function up and am tired of feeling crummy 24/7.

I've really been thinking about my treatment times. I do my treatments sitting at my computer. I check my various email accounts, browse facebook, blog, balance my checkbook, etc. I noticed that while I'm doing all these things on the computer I am breathing shallow. I'm so focused on what I'm doing, that my breaths are shallow and I don't take breaks to cough. Treatment times often are something to be checked off my daily "To-Do" list and nothing more. I don't view them as the life-lengthening, critically important times that they are.

So.... I'm trying to change that. I try to focus on my breathing, taking long, deep breaths in and holding for a couple seconds every few breaths without making myself light-headed. I stop to cough when I need to instead of suppressing it for the end of the treatment. I take 5 minutes or so to go in the bathroom and cough all the stuff out that I just shook loose. It's kind of pointless to take these treatments, shake all this mucus loose and then let it sit and re-settle in my lungs. I make it a point to go stand over the toilet and cough/huff cough til I feel like there's nothing left to come up. The toilet is where I do my coughing, and as most CFers know, I often cough to the point of gagging and may lose some stomach contents in the process. Gross I know, but a reality. I've actually thought about videoing one of my coughing sessions and posting it. Most people who have never witnessed one think I'm dying when they hear/see it.

This is something that has been weighing on my mind for quite some time and I thought I'd share. I know other CFers have posted similar posts on their blogs, but I thought I'd share mine too.

For all you healthy folks, take the same concept and apply it to everything you do. Exercise, work, whatever it may be, make the most of everything! It makes life so much better and more enjoyable!

Thankful Thursday: Work, CF Treatments & Twins

Well another week has passed us by, forever recorded in the history books. It's Thursday again, which means two things. We're close to the weekend being here and it's time to celebrate life with some thankfulness! Monica and I got this idea from another couple with a blog a year or so ago. Their names are Ronnie and Mandi and their blog is listed below under "other awesome blogs." We loved it so much, we decided to start doing it ourselves. Here's the idea, we take a little time each week to pick out a few things we are thankful for. Enough chatting from me, here's our lists:

Monica's list;

I am thankful for my job! I need to make sure and remind myself of this one. I am still working and there are days it is just plain hard. But I have a job and I am still able to work and make us some more money! :) I work with some great people who do everything they can to make my job easier on me right now. Without all of their help I wouldn't be able to continue working in my position as a baker. There's a lot of lifting involved and there's always someone lifting boxes for me and setting things up so I can just scale things out. I appreciate it so much!


Jeremy's List:

I'm thankful for medical advances! Things have changed a lot from when I was a kid when it comes to treating CF. I was born in 1984. At that time hand-clap CPT was the main treatment. There was no pulmozyme, no vest, no TOBI (there was tobramycin, but not the specially formulated version we now have), no Cayston. We didn't know the effects of hypertonic saline or taking azithromycin routinely. Things have come a LONG way! I remember when the Flutter came out. It was considered a huge medical breakthrough (at least in my area it was treated that way). I'm thankful that we have come such a long way. I spend a lot of time taking treatments every day, but I'm thankful I have the treatments to take that help keep me healthy! I'm also very excited to see where the future takes us!

I'm thankful that we have 5 weeks or less until we meet our boys! I make a point to feel them moving inside their mommy's tummy everyday. The anticipation and excitement grows every day! I cannot wait to meet my boys! They're gonna be the coolest, cutest, most awesome little guys ever! I'm thankful that they'll be here before we know it and for the blessing that is this pregnancy!

Thankful Thursday: Pregnant, Ultrasounds & Treatments

It's Thankful Thursday time again! Another exciting week recorded in the history books! There's plenty to be thankful for in life. Many things we often overlook. As you read our lists, ask yourself what you are thankful for. Then, post a comment sharing it with us! There's nothing too small or insignificant to be thankful for. Here's our lists!

Monica's list:

This one's pretty obvious.... I am thankful that I am pregnant!!!!!! You don't even know how amazing it feels for me to be able to type that! I am smiling just using those three simple words... I.AM.PREGNANT!! Ahhh... anyways! ;) I am so thankful for where God has brought us! Our IVF process was so smooth and at times even enjoyable! Yes there were times it wasn't so great, and the whole spending thousands of dollars thing kinda stinks, but it made it all that much more special! I also believe it was a bonding experience for Jeremy and I. Out of the 103 shots probably half of them were given to me by Jeremy. Every evening we would have our "shot date time." Ha! EVERY SINGLE time he would apologize that he was having to give me yet another shot and he looked so sweet and caring. He would thank me for going through all of the shots and procedures "because of him." (Which is never how I saw it!) I know without a shadow of a doubt it has brought us even closer than we already were and I just love him more everyday!

I am thankful for our almost 13 week old twins!! I would say out of everyone I was the most scared to have twins. We knew it was a good possibility with IVF so I had been bracing myself for it. It's one of those things where you never think it's going to happen to you though. I never would have imagined that someday I would be carrying two babies at one time! Sure there are things about it that make me nervous, but now I wouldn't have it any other way! Jeremy and I seem to see twins all the time now! We are so excited for the double blessing poured out and "two for the price of one" deal we got! Haha!

Jeremy's list:

I'm thankful for ultrasounds! I get so excited every time we get to go have one done. I can't wait to see how big our little miracles have gotten, to watch them move and to simply see them. It almost feels like I get to connect with them in some strange way when I see them. I just love it! Every time has been something different. I remember the first ultrasound, wondering if there would even be one baby to look at. We were in awe when she told us there were two and we got to hear both heartbeats at just 6 weeks old. Their yolk sacs were bigger than they were at that point. Then we saw them in their alien stage at 8 weeks. They had little arm and leg buds, and ginormous heads! At 10 weeks, they had developed elbows and knees and their heads didn't appear quite as big, lol. They were having a wiggle party in their momma's womb! (Absolutely love being able to refer to Monica as their momma!) They were moving those arms, kicking those legs, and wiggling. I can't wait to see what they look like and what they're doing next!

I'm thankful for the various ways of treating CF! I can remember as a kid, TOBI coming out, the vest coming out, and since then, newer, better ways of treating CF continue to come out! I'm very thankful for that. Not just for me but for my family. I will get to live longer, healthier and happier because of the medical breakthroughs in CF. I'm also excited for the younger CF generations. They have an even better chance at living longer, healthier lives than I do because they have all these resources and treatment options available to them from the beginning. That is EXCITING! If you are a younger CFer and reading this, know how fortunate you are. Educate yourself, do your treatments, exercise, take care of yourself. If I, at 28 years old, have a good shot at living to be 50 or older, how much longer will you be able to live with all these resources at hand! Treatments are my way to a healthier life, where I get to spend more time with my family and not be sick all the time!

So what are you thankful for today?! There's something out there to be thankful for! Find one and share it with us!