Need a Plan and Support (Total Treatment Slacker In Need of Reform!)

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Bailey Vincent

New member
So, the time has come that I need a plan! No matter how hard I try to keep up with my meds and routine, life (I'm a single mother of two little girls) always gets me way off track.

My question is this: how did you establish a care plan, how do you stay on top of it, and what are the top #3 things that make the biggest difference?

Yes, it's time for me to confess my sins! As it stands I use the Tobi app to remind me when to take my meds- but they change so frequently, I sometimes slip up. I'm on alternating rounds of antibiotics (Cipro this week, Doxy next)- but feel they rarely work because I can't keep food down. I'm on Zofran to fix that problem, but am losing my appetite more often that not. How many of you drink something like Ensure when a meal just isn't going to happen (have a better brand to suggest?) I need to use my neb consistently, but get impatient- and do it more erratically than I should.

I want to start tracking my O2 intermittently, because sometimes I think it's my heart constricting breathing more than actual lung function (I have work up with cardio soon)- do you guys recommend a pulse ox at home? Chest PT helps me a lot, to be honest, but I live on my own most of the time and am yet to pursue other tactics. Should I look in to/inquire about otherwise?

Xoxo... Your help and support means the world!
 
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welshwitch

Guest
Can you work out a couple days a week? That helps me LOADS and will impact your health, too. An hour a week, twice a week?
 
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welshwitch

Guest
Oh, and to answer your questions:

*how did you establish a care plan

I realized that getting back into running was a make-it-or break it type of thing for me. I run 2 to 3 times a week after work. I also make sure I am doing my pulmozyme every day before work (get up 15 minutes earlier to make that happen.) Always have pills on me. Don't forget to take them!

how do you stay on top of it

Make it a priority. Say no to other things. For example, I try to cut down on drinking, going out with friends, and wasting time on the internet after work at home and instead use that time to exercise. Take care of myself. Get enough sleep. Don't work a job that is so stressful that it takes a toll on my health. Go to all my appointments. I also sometimes track how I am feeling in a journal, especially if I am dealing with a lot of inflammation, hemoptyosis, etc.

*and what are the top #3 things that make the biggest difference

Keeping stress level low, exercise, and taking all the meds. Being consistent. That's it. Logging onto this site often also helps me stay accountable towards my health. Also, I finally started taking ADEK meds consistently in December and I haven't been sick since!
 
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Bailey Vincent

New member
Ah, yes- forgot to mention working out! I have been doing a water aerobics class 1 or 2x a week with a friend, which (being that I'm only 26) would be somewhat embarrassing if I didn't A) adore the 90 year olds in the class, and B) find it rather difficult. But overall, it hurts so much less than other options, and I feel really stretched and motivated after

Im also a dance teacher, so have one night a week where I dance faster than my lungs can carry me, so to speak. And it fuels my soul for the rest of the week ; ) Can't do without it... know the feeling?
 
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welshwitch

Guest
This sounds fantastic so far! So, is the issue with taking your meds and doing treatments? What meds and treatments do you need to be taking right now?
 
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Bailey Vincent

New member
You were spot on in that the issue is both: finding time to stay active when I'm sidelined with infections, and staying on top of treatment

Also, how many of you guys get kidney infections? I was kind of bummed to know another organ grappling with infection. Boo hiss
 
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jshet

New member
You can buy a pulse ox at Walmart or get one online. Igot mine at amazon for 40 dollars. Maybe as far as staying on task with your meds and chest pt, you could try to think about your two little girls as motivation to complete them each day. They would want you to take this time for yourself. When they are older and can understand, they will realize how much you do to stay healthy for them and you.

Maybe try having movie time with your daughters while doing your treatments. Something you three can enjoy together and get your treatments done at the same time .

I hope you find the answers you are looking for. Good luck, Janelle
 
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rmotion

New member
Back to basics, once I get sick then get in hosp then it is back to basics. First step is to decide that you will take your care plan more seriously.Nebs, food, pills, treatments, eat, rest, exercise rinse and repeat. There is nothing easy dealing with CF. I have a excel spreadsheet that lists all my stuff I got to do and try to keep organized that way. Key point you have to stay healthy for your kids if you are sick then you can not take care of them. Everyday you need to do something to improve your health.
 
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