Tuesday, May 4, 2010

The Ten Things That Make My (CF) Life Easier

This idea actually spun off from me thinking about how thankful I am for different things in my life. I then got to thinking about how much easier my (CF) life is because of certain things I've either bought, inherited, or stumbled upon. Here is the top ten, actually 16, and why I think they make my life better.

16. Good Veins- Having hoses running through my arms has given me the privilege of avoiding multiple sticks most of my life (except this time). I'm not sure if it's something I've done, or just inherited, but I do know that they have made my CF experience more enjoyable. I've had 30+ PICC lines though so who knows how much more they can take.

15. Foot Orthotics- The jury is still partially out on how much the orthotics will help me maintain my running schedule, but so far, so good. I haven't had any major pain to speak of since getting them made for me (Thank you POA and Lindsey).

14. Gyms- I've lived in Arizona my whole life and so far it's been 100+ degrees every summer. That's certainly not optimal outside work out weather. Luckily for me the concept of indoor gyms has been around since before I was born and I have taken full advantage of them. I've had a gym membership since I was 16 years old and although I have had several seasons of my life of consistently going and not going, the gym seems to always call me back to her.

13. My Friends- I've been blessed to always find myself with good friends. Friends who are there for me when I'm sick, but don't treat me like I'm sick when I'm healthy. They've always been understanding in that a CF life is atypical in nature but that it's important for that life to be as "normal" as possible. Often times it's completely forgotten that I'm "different" and they're always there to hold me accountable if I'm screwing up.

12. inCourage Vest System- Admittedly, I would choose a hand pound over the vest every day of the week. I got pounded by hand for the first 20 years of my life at least twice a day and I think it helped me immensely. But with that said, the vest is certainly better than a sharp stick in the eye and I'm thankful that I have a very light and portable one. I take it with me on every vacation and it's very easy to slap on while I work or browse the Internet. It's definitely an easy way to get in all of my treatments and I know that it's doing my lungs good!

11. Wintergreen Mints- It's probably just me, but I swear I breath better when I'm sucking on a wintergreen mint. I usually will have one in my mouth before doing PFTs as I think it opens me up a little. I of course have no scientific evidence to base this on, but sometimes believing that something good is happening is just as good as something actually happening.

10. Baby Bottle Cleaner- This is a fairy new piece of equipment in my house but so far it has produced wonders. I'm actually new to the whole nebulizer cleaning thing (didn't start consistently cleaning my nebs until March of this year) and I started with a hot pot at first and then moved on to just throwing them in a pot of boiling water. Now, I throw them in a baby bottle cleaner, add water, push a button, wait six minutes, and then presto bango, CLEAN NEBS! It's amazing I tell you and what I time-saver.

9. Protonix- So I used to throw-up every single morning of my life from about 1994 to 2004. This of course can be a major problem because I would eventually just be puking up stomach acid, which is not friendly on the throat, mouth and teeth. I had the same routine going of feeling sick almost immediately upon entering the shower and then about 5 minutes later I would start throwing up mucus that I had swallowed the previous night while asleep. I realize that much of this was probably psychosomatic and had just become a habit that I had fallen into, but when I started taking Protonix regularly the throwing up became less and less common.

8. Insurance- I know that I have some problems regarding insurance right now, but there is no doubt that I have been blessed with great medical care my whole life which has been paid for by my insurance company. I've really never had a struggle with getting stuff paid for, and with the exception of one time, they've never put the heat on my doctors for all of hospital stays (a direct phone call from me nipped that in the bud).

7. My Blog\The Internet- This blog has provided such a great accountability tool for me and a great way to express my views and opinions on CF and life (which happen to a lot of overlap). The Internet has allowed my to connect with people out there that I otherwise never would of as well as keep up with the happenings of the CF community and research at the click of a button. Have a question about Cystic Fibrosis? It's only a click away and you can actually get a straight answer from somebody who is going through the same kind of things.

6. Invacare 50 psi Compressor- Going from the PARI ProNeb to the Invacare Mobilaire has made a world of difference. I've cut my treatment times down by at least 50% and the medicine just makes me feel different when going in. It feels like it is having a larger impact on my lungs and it one of the best investments into my health that I've ever made.

5. My Love of Sports- Everybody who reads this blog knows that I preach being faithful with your treatments and staying active. Fortunately for me, I've always been 100% with staying active because of my love for sports. Whether it was tee-ball, YMCA basketball, high school football, or church league softball, I've always been involved in some type of sport. In fact, my longest career thus far has been coaching football which I did from 1998-2004. It required that I stay active just so I could keep up with my players!

4. Patience- Here's the deal, not everything in life is going to work out the way you want when you want. Throw a chronic disease on top of that and your life can be completely different than you ever imagined. There are ups and there are downs, but I've been given the gift of patience by God to see me through the down times. I realize that there is a plan and although I may not know exactly what that plan is, I know that He does and He'll accomplish His Will through me. I also know that His Will in my life will be 100% perfect and I was the man that he chose to carry it out. Sometimes it just takes a little patience for His Will to unfold, as it's not my timing, but the Lord's.

3. Mandi- There is no doubt that when God created Mandi, He had me in mind. There is no other way to explain that a woman exists that has everything I've ever hoped for and has opened my eyes to other qualities I never knew I needed. She is the biggest reason why I'm so committed to staying healthy. I want to be around for her for as long is absolutely possible. Not only do I want to be around, but I want to be the boyfriend/husband that she's always dreamed of. She is truly my best friend and a gift sent by the grace of God because I truly don't deserve a woman like her.

2. My Mom- When I thought of qualities that I knew I needed in the eventual mother of my children, many of them came from what I saw in my mom. She has absolute unconditional love and I knew that her family was what she cherished most. She has sacrificed more than I can list in order to provide me the best care possible starting in early childhood by selecting a job because of the benefits. She lived without so her kids could live with. She was incredibly soft and nurturing yet showed tough love when I needed it most (which was often). Most importantly though, she raised me to live my life and to never ever use CF as an excuse. That put me on the path in which I still live today, and for that, I'm eternally grateful.

1. My Faith- Truth be told, God has provided everything to me that has made my (CF) life easier. He chose my mom , He created Mandi, He gave me my talents and character, He provides me resources, and He put specific people in my life at specific times. I know that He also allowed CF into my life for a reason and that He also promises not to give His children things that we can't handle. He has already set my plan in motion and has given me the proper tools to navigate through life. I trust His plan is perfect, and thus far I wouldn't change a thing. Most of all, when I can't do it on my own (which is 99.9% of the time) He's there for me. When I need His strength it's available. When I need His grace, He provides it. When I feel uneasy, He gives me peace that passes all understanding. When I have doubt, He gives me clarity of mind. When I have sorrow, He is there to give me comfort. And when I have death, He will bring me home to spend eternity with Him.

Here's how I look at it: God and I signed a lease on my life when I was born, I don't know when the lease expires, but I do know that I'll go WAY OVER on the miles.

15 people had something to say...:

Kristen said...

I agree with many of those, and some I need to take on! (Like patience! And, I'm very intrigued by this compressor - I have a pari and asked to get an eFlow, but, no dice. I'm gonna ask about the Invacare one at my clinic visit this week!)

Denise said...

Nice post, Ronnie. Although I have to admit, the last part was hard to read and brought tears to my eyes.

Deb said...

i hadn't thought of a baby bottle cleaner. genius.

Pegson said...

t post...looking into the steralizer although i wish i could find something that actually does the pre clean first

Anonymous said...

btw the eflow I never liked... went back to pari.

anyways my question is in the one video where you "combine" the vest and mandi beating on you where did you get the plastic hand cup things. Ive been trying to find them for years and never could, those look more for adult use instead of the pediatric small ones I had growing up...
and i dont know if you thought of it but i noticed you had her beat on the front of you along w/ the vest, have you ever thought of her on the back and the vest in the front? i have been doing that for a few years w/ my mom (or whoever) beating on my back and it always helps me cough more.

how did you come up w/ the baby bottle cleaner? i always just boiled them until i had the eflow and they had this soap then alcohol system that i use now with regular pari neb cups but it is time consuming. going to try the baby bottle cleaner.

Tabitha said...

Kristen I had the eflow for a while but found it to be finicky and time consuming... the aerosol "heads" get clogged w/in two weeks of getting a new one and they only give you a new head every 4 months, once the head is clogged it was the same time as any other nebulizer. Also cleaning the heads took at least 10 mintues and even following the process exactly the heads still got clogged. whew sorry had to get that out there haha

anyways ronnie/mandi in the video where you "combine" the vest w/ manual cpt where did you get the cups mandi is using? I have been trying to find some for years b/c i only have two pediatric ones that are tiny from when i was little. the ones mandi uses looks more for adults... did you concoct them on your own?

btw the video only shows mandi beating on the front of you along w/ the vest. I have been having my mom beat on the back of me while the vest is on the front for a few years and while she doesnt do it every treatment, when she does do it i always cough more up.

anyways theres my two, or more like five cents
sorry if this posts twice, the publish thingy didnt let me log in and then it didnt show the blogger approval message when published anon.

Somer Love said...

Hmmm Interesting I'll try the mint thing is there a certain brand you suggest?

I throw all my nebs in the dishwasher by themselves I have a sani cycle on there seems to work good but when I go on trips I think I will have t get a baby bottle cleaner. AWESOME!

Ronnie "Sickboy" Sharpe said...

Somer- I prefer either the Lifesaver wintergreen (if you click on the wintergreen mint link in the post it should show you a picture) or I like the classic red and white peppermints

Tabitha- The video was actually just me and Mandi messing around. I heard that pounding the vest can damage the vest in the long run. When I do get pounded though I take all lobes and even an "extra lobe" they say (my lower anteriors). The cups that were used in the video are from the hospital, I would bet that you could find some off the internet as they are just Resuscitation Masks. Just google and I'm sure they are available.

With the eFlow you can clean the heads in a baby bottle steam cleaner like the one I talk about. If you want to use a standard compressor instead, I would recommend looking into one with higher psi than the PARI. Just my personal preference.

Lauren & Alexandria said...

Nice post, this made me realize everything that makes my CF easier as well :)
such as,
family,friends,vitamins,love,texting lol,internet ect ect.

Amy said...

I am so thankful for this blog, Ronnie! I get so much insight on so many different things and it's so helpful! I'm trying to decide on a bottle sterilizer to buy and am a little overwhelmed by all the choices. Which one do you use and do you like it? Or is there a different one out there that you think would be better? Thank you for all you do for the CF community!

Cara said...

Ok, MINDREADER! I was just looking for a bottle sterilizer this morning and I couldn't decide which one to get. Thanks for the tip!

SheSimplySnapped said...

How do I know which baby bottle sterilizer is the right one for me? I have the pari LC nebs and am going to start using the side stream nebs at some point. I saw some that were microwave sterilizers, one that was a portable sterilizer. I guess I want to make sure I'm getting the right thing before I go and spend $80. If I can get something that works just as well cheaper, well, that would be better. I put mine in the dishwasher, but not often enough. Would appreciate any comments you have. Thanks!

Ronnie "Sickboy" Sharpe said...

The only sterilizer that I have any experience with is the one I have listed in this post and under the post "My Cystic Fibrosis- Equipment". It is the Phillips Avent model. Hope this helps!

ohkae said...

i've had the same "throw up every morning" problem since i can remember. i didn't know there was actually something for it! i thought i was just weird. anywho! i also use a baby bottle cleaner for my son's neb. brilliant idea!

Katy said...

Hey Ronnie - I just recently started cleaning my nebs too (being a nurse I am embarrased to say that I have just started this now!). I just started on Cayston so they were nice enough to send me a baby bottle steam sterilizer and it has made my life so much easier!

As far as nebulizers go - I switched from using the Devilbliss to the pari proneb ultra. I am curious about the Invacare 50 psi Compressor that you mentioned.