I know there are plenty of CFers (and probably a good handful of CF family members and significant others) that hate treatments, and I get that. 2-4 times a day, you have to stop what you're doing, sit down, stick a neb in your mouth, and strap on your vest. When you're spending the day somewhere, you have to debate whether to skip a treatment or bring your treatments with you (which includes packing and unpacking cords, nebs, machines, meds, etc etc etc). Man, what a nuisance, huh?I, for a while, was annoyed by Ronnie's treatments. I didn't like that we would have to go home sometimes in the middle of the day because he was feeling junky. And I still, at times, find myself being perturbed by the fact that Ronnie has to do 4 treatments a day, totaling nearly 4 hours a day. 4 hours away from time spent with me, right? WRONG! Not necessarily. Not if you fill the time right.
Ronnie and I have found a lot of fun things to fill treatment time with. We have found TV shows that you don't need sound for, like House Hunters or Property Virgins on HGTV (and actually, most HGTV shows are good sans sound). We plug headphones into a computer, each taking an ear bud, and listen to funny segments of a radio show in town. We sit at the table and play card games, Skipbo is our favorite. Ronnie will catch up on games that were on throughout the day, and I'll let the shaking of the vest "rock" me to sleep on his shoulder. We'll both pull out our laptops and play around on the internet; he'll do his blog, I'll stalk people on Facebook (shameful, I know). We'll catch up on email or get in an extra hour of work. We'll download a hidden object game (hidden-object-games.com, check it out).
Regardless of what it is, we use the time to be productive or to enjoy each other's company. I've realized that instead of it being "time out of the day", it can become a good excuse to spend quality time together. I've actually come to like Ronnie's treatments (just a little bit) and have started referring to it as "treatment time". Next upgrade to treatment time? We've decided we're going to get wireless headphones so we can watch TV shows WITH sound. WOOT WOOT!
What do you do during treatment time? Give us some more ideas :)
I cannot tell you how many speakers we have blown how because of my treatments! I should really get some wire head phones... thanks for the idea!
ReplyDeleteI usually blog or watch movies. I watch a lot of movies. I'm afraid of turning the television up too loudly, so instead of actually having to really pay attention to a TV show, I'll just watch a movie I've already watched a half dozen times. It's great for games like Scene It! I'm still undefeated.
Have you tried bejewled blitz on facebook? Totally addicting...no sound needed! I can, and have, killed hours playing.
ReplyDeleteOh the days of "turn it up" are finally long gone for us!! We have the E-flow and its silent...like 100% no sound!! We love it. Yall should look into it. It fits in my purse and is battery opperated also. That dont fix not having the vest but hand CPT or the cup serves the purpose =)
ReplyDeleteMy son is only 4 months old, so we're still doing his CPT by hand. The first month we were doing it, he would be fine through about half of it, then the last few positions, he would get SO upset. I finally came up with putting Baby Einstein's on the laptop for him, so I could move the screen around easily no matter what position he's in. He still gets upset at times, but at least it's not such a horrible experience for him anymore! I'm sure that doesn't give any of you older CFers any ideas, but it sure does help with my little boy!! I love hearing anyone else's ideas for when he gets older!
ReplyDeleteI am usually watching something like Baby Einstein on the DVD player...It's the only thing that keeps Nathan happy.
ReplyDeleteTreatments are a nuisance but I agree, it is time that I get to spend with Nathan, alone, alive, and breathing.
Sometimes if he is being really good, I will try to hold neb with one hand and facebook/blog/twitter with the other hand.
I just veg out and watch TV. And yes I turn it way up it is so loud that now we have realized the speakers are blown so the sound quality is not good at all. We just use the tv for treatment time so not biggie and it is old anyway but I will have to be careful if we buy a new one, ha ha. I try to read sometimes but the bouncing of the vest is too difficult and I hold the neb with my hand so my jaw does not get tense so it is just easier to watch tv or movies.
ReplyDeleteTv... Twitter... Reading .... Meditating... Movies.... Or working!
ReplyDeleteThis post is absolutely wonderful. I wonder if I had anything to do with it? Haha.. well Ronnie / Mandi I'm still on it every day.. so THANK YOU! :)
ReplyDeleteSometimes everyone just needs a little pick me up. You guys were mine.
I spent most of the time surfing the web or reading since they don't involve sound.
ReplyDeleteOK...hold on. Skipbo?!?!? Dude I love that game. Well, Jenny and I usually end up sitting down on the floor with Bryce while he watches his Baby Bulldog DVD. It's like a Baby Einstein, but it's all about the best place on earth- The University of Georgia! Bryce loves it. He is close to saying "Go Dawgs!" I will say it was pretty cool when he said, "foobaa" (that's football in Bryce talk)
ReplyDeleteWe call it "Treatment Time" as well. We sing the theme to Tom & Jerry "nanana Tree-eat-ment time.." when we're getting ready then we make roads with Homemade playdough or watch funny Youtube vids :)Also, I have Hayden look at pics of other CF guys doing their treatments
ReplyDeleteThanks for filling me (and others reading) in on what you all do!! We haven't blown out any speakers yet (Luckily - Ronnie would murder me if anything happened to his TV ;-) !!!)
ReplyDeleteDenise- I'll have to give Bejewled blitz a try sometime.
Sara- the post's theme was a fortunate coincidence...hope you liked it.
Bryan- Ronnie and I have spent hundreds of hours (literally) playing Skipbo...we LOVE it too!
Keep on those treatments and shoot me a message if you find any new, fun ways to pass the time!
I don't do treatments now since transplant, however recently I've had to do the inhaled TOBI. Basically I will be on the computer while doing the TOBI (which takes about 20 minutes) or work on schoolwork. And that's basically what I did pre-transplant; I didn't use a vest, so I couldn't do them at the same time as the chest therapy. I think the vest is great for cutting down the amount of time spent because you can do the two together!
ReplyDeleteI LOVE SkipBo...very fun :) And yes...you don't need much sound for House Hunters or Property Virigins, two shows of which I love to watch as well!
Hey Ronnie...
ReplyDeleteDo u use the air compressor with all of the treatments...the albuterol and pulmozyme???
Hey Holly-
ReplyDeleteI use my compressor with every med that I take. You have to adjust the psi for some, but it's all provided by the CFF website.
Don't hesitate to contact me with any other questions...or if you need the psi recommendations!
Ronnie
I am usually on my computer during treatment time. Makes the time go faster for me. And I have the same compressor you do...use it for all my nebs too.
ReplyDeleteSometimes my 15 month old son likes to cuddle up with me and my vest. Its makes him laugh and warms my heart. Other times I use the time to do nothing but read a book while my husband cleans the house:)
ReplyDeleteMy daughter is now nearly 12 and strangfe as it sounds we enjoy physio time ......It's our time for the two of us to spend together and no one bothers us. It's suprissing how many little things she remebers to tell me while we do it and it definatly helps with toiugh times being able to rememebr little silly things she had said to me. I know one day I'll have to let someone else take over but for the last 12 years i have loved 'our time' x x x
ReplyDeleteMy son usually watches t.v. or plays on the computer. He usually has the sound turned way up though! :) As you can imagine "breather time" is very loud in our house!
ReplyDelete