Day in the life

I often get asked what a day for me is like, or what is it like to be me?? We all know how much I love life. And that my life gets very interesting, and quite entertaining at times, but it is also consumed by treatments, meds and sometimes doctors. In the past I have mentioned that I will finally sit down to do something and alarms goes off for meds, and its much worse when I am sick

Well I know longer get to sleep the day away, I use to sleep all morning and finally get up to half function, not the latest I can sleep is 10 to get all my meds in on a healthy day, on sick days I usally get up at 7 take my meds, go back to bed to get up and take more. First thing in the morning, I grab my inhalers use them, connect to my IV which was hopefully spiked the night before, start my saline, to come down the hall for neb treatment and chest PT, this can easily take up to an hour from start to finish. But this isn't the end of my morning routine. I have to eat to take my pills and use more inhalers!! Grab an extra saline bag on the way back down the hall so I can sit on the computer for hopefully a couple hours (shameful I know) but if I am getting ready I do make-up and hair and get ready while I dropping a liter of saline, while making sure all my oxygen tanks are full if I need to go out. Or when I go see my wonderful students and favorite nurses, I combine a lot of these (which I am not suppose to but Wonder Woman knows I do.) to cut off my time. 

Around 2, its time for more meds! YAY! Nothing like AM meds, so its usually just lunch more meds and some inhalers a handful of pills but the least amount thru out the day, I hope by this time I am on my last liter of saline, so I can maybe bake something, fix a nice meal or something. Sometimes I way to go out at the time, so I dont have the worry of reconnecting to my saline once I get home. Only to come home or drop what I am doing to do another neb treatment. Which isn't that big of a deal if I am not sick. If I am sick, I have to sit on my vest for a bit. Maybe even take some steroids which I try to avoid like the plague but a girl needs to stay healthy. 

Hopefully by now I am back to my daily life, cooking, sewing, reading, plotting destruction. From here I should be good for the rest of evening!! Outside of using my inhaler for the evening but compared to earlier its nothing. Though if I am sick, its time to start forcing myself to eat, taking some of meds as not to mix my antibiotics and some meds. which must be taking by 7!! On a good day I am probably just eating dinner so I can take all my night meds and start doing breathing treatments, chest PT, getting IVs set up for the next day, and doing a ridiculous amount of inhalers again. 

My life sorta revolves around my medication and therapies. I don't like it is this way but I do fight for my freedom all the time. I somehow make my life work in this strange life I have. Though these disease are a blessing in disguise. I wouldn't have so many wonderful opportunities in my life with out them. Or amazing people either.  As always I have treatments to do so I must hop off here and get them done to make dinner!! 

Before I forget, to the nurse that gave that website for food, THANK YOU!! Tho everything I want is sold out. I got a few boxes of safe food (vegan/gluten free "cup of soup" no sea salt!!) and a bottle of safe nail polish!! LOVE!! 

Now for treatments

Love Yall

~Poppet