Hi there, I'm Rima....
Sooo... this is all very new to me, this whole sharing thing with people. I'm not a big sharer when it comes to telling people about my life with Cystic Fibrosis. I have no problem answering anyones questions when they ask about CF, that doesn't bother me. But I feel when I'm asked how I'm doing/feeling and answer fully, then that feels like a complaint. I usually don't complain about the big stuff just the normal stuff "everyone" else complains about. Such as, ugh I have a wicked headache or omg I'm so full, my food baby is going to explode (named Earl btw, but right now that he's shrunk, I have named him Gilbert. Gilbert Grape because he is the size of a grape. I wanted a name that started with G...nothing to do with the movie). Anywho, I will try to elaborate on what my day is like with all of my CF shenanigans.
So here goes. I sleep like crap. Normally, I wake up multiple times throughout the night, because ugh I need to switch the side I'm sleeping on. I wake up to cough because theres usually so much damn phlegm trying to choke me and then I'll wake up for absolutely no reason. It doesn't help that I'm a super light sleeper and wake up to anything but usually I don't stay awake too long. Morning comes usually a little after Dennis wakes up. I'm generally doing a neb by 7:30am. I use the word nebs when I refer to the meds I use with my nebulizer. Neb #1 is Duoneb, which is like a super albuterol, it's a combination of Albuterol and Ipratropium. Duoneb is my best friend, Duoneb = life. I need Duoneb several times a day to function or else breathing becomes like riding a struggle bus. After the Duoneb I do neb #2 called Hypertonic Saline, which is basically like salt water. Its a 7% saline solution so it's not something you would not put in your eyes with your contacts. The point of the Hypertonic Saline is to make me cough and loosen all that junk thats been sitting in my lungs all night. Once I do nebs #1 & #2 I feel superrrrrr!
*Side note, I'm on oxygen basically the whole day and yes, all night. I can sometimes get away with not wearing it for short periods of time but when I do I have to monitor my O2 levels to make sure they don't go below 90. Staying above 90 is the "safe" point but I'm okay with getting down to 87... and sometimes a little lower too (shh don't tell my docs!). *
By 8am Dennis is done getting ready for work and it's time for my beatings. Dennis beats me twice a day, but now that Laima is here, she helps to beat me too. Oh yeah, so beatings is the term I use when I refer to the chest physical therapy that us CF'ers need 2-3 times a day. This chest percussion helps loosen all the junk that sits and sticks to my lungs. Theres also a machine thing called the Vest but I don't really like to use it, the version I have is older and will be getting a new one soon. The vest basically shakes you (like shake n' bake chicken). They don't really like it when I use the term beatings because as you imagined you might have thought of something abusive. Emily Joyce-brady, one of my roomies from college used to beat me my senior year and has now been beating me ever since whenever we hangout. I've taught many people how to "beat" me.
After my "chest PT" I continue with my neb regime. This can sometimes take over an hour depending which nebs I do. It's normally about 5 nebs.... uh so annoying, I know. So, if I ever have a certain time I need to get up I need to add about an hour and a half to it... *palm to the face*. During this hour plus long neb session I'm usually on my phone in the morning, you know just cruising around on instagram watching all the animal videos that are in the feed and such, as well as on facebook. Some people wonder how I find all these awesome animal videos and pics, welp this is why... (Emily JB, makes fun of me, & Olivia joins me. Well, when I'm in their presence at least). Oh and I'm basically coughing throughout all my nebs, which make me a sleepy kitten again even though I had just woken up like an hour prior. Burning cals and I haven't even left the bed!
Yay, done with nebs.. for now, onto breaky (what Laima refers to breakfast as). I'm boring and pretty much have the same damn thing every friggen morning. I'm super bored of it. I make a Skandi shake. A Skandi shake is a super calorie weight gain shake. One envelope of the vanilla flavored powder is like 580cals. I mix that with 8oz of half and half...yes half and half and then add chocolate syrup. The vanilla is gross to me and after years of drinking this everyday the chocolate is gross to me too. The shake ends up being almost 1,000 calories (ugh food). Gaining weight for me is a very difficult task. Losing weight is super easy, it should be illegal how easy it is for me to lose weight (yes I know what you're thinking, let's trade stomachs, Laima is working on this). With my Skandi shake I take my morning stacks (handful of pills). I also need to take enzymes when I eat anything.
Time for a neb again! I usually need a Duoneb or the albuterol inhaler about every 3-4 hours. That's when I start to feel really tight and have trouble breathing and then often go into a coughing spell (sleepy kitten). Hmmm I really should get a midday beating, but then I don't... At this point I should probably eat again too, high metabolism + burning cals just from breathing makes me need more calories. Breathing at high altitude burns even more cals on top of it. I'll repeat this neb 1-2 more times before my night time neb regime. As well as thinking about me needing to eat (whether I end up eating or not). If I'm going to be gone most of the day I'll pack my portable nebulizer that I can use in the car or anywhere for that matter. But, if I'm only gone for a couple hours then my Albuterol will do.
Evening rolls around and it's time for dinner. Since Laima arrived she has been making amazing dinners for us, trying to fatten me up! Sometimes I'm super hungry but then when I go to eat I can barely finish what I put on my plate. Which I then turn to Dennis and ask how much room he has left and slide my plate on over to him. Some days the grape behaves and I can eat a good amount. I ate a whole famous star burger from Carls Junior the other day! With dinner, more enzymes and more stacks (handful of pills). I usually end up taking up to 20-25 enzymes in a day. After I eat I'll usually give myself some time before I do more nebs. The nebs can often make me cough so hard I throw up, so... I'd rather not do that and wait (I don't want to have to go make food again). I'll elaborate in a later post my "relationship with food".
Finally a few hours later, I'll start my night time neb regime. Sometimes I'll already had done a Duoneb like an hour or two before, because like I said I end up doing those a bunch throughout the day. Neb #2 will be hypertonic saline (salty salty). Neb #3 it's supposed to be Pulmozyme, but I've been waiting FOREVER for my insurance company and docs to get their *ish* together (by forever I mean since I've moved to CO). Neb #4 Budesinide, neb #5 Perforomist, and finally neb #6 would be an inhaled antibiotic. I alternate between 3 every month, right now I would be on Tobi. But, of course I'm also waiting on that too...(grrrr). So at the moment I'm only doing 4 nebs AM and PM.
During these nebs, theres only so much I can do. Back to cruising around on instagram and facebook, yay animal videos and such! But more so I watch some shows with my PM nebs. Right now Dennis and I are on season 3 of Vikings! We alternate between that, 11.22.63 the James Franco show, Vinyl, Girls, Broad city, Fresh off the Boat and Empire (yes, many choices and boy am I indecisive). After the nebs, I'll get beaten again because I misbehaved... ha JK, chest PT round two. Finally the last thing I do before bed is to get my tube feeding set up. I have a G-tube that's tots necessary but quite annoying. The purpose of the g-tube is to gain/maintain weight, which is close to impossible for me. Like I said, I'll elaborate on this whole "relationship with food" in another post.