#timetoblogthursday!

its that time!

so tomorrow will mark 2weeks that I've been out of the hospital.. I actually have a CF appt tomorrow afternoon now that I think about it. but I finally took off all of the bandages on my port so its kinda freaky for me to look at && see, but also cool..

I can barely feel it anymore! when I first got home I didnt even wanna move at all, for fear it would wiggle out. I'm getting more&&more use to it && comfortable w it. at first I would have these waves of total regret && just wanted to rip it out or ask if I could get it taken out but those went away ;) thank gosh.

I admit my sleep pattern is pretty much back to how it was before I went into the hospital.... except that I'm going to bed earlier than before! like I've been trying to go to bed by midnight at least. so thats a start. but I still wake up late anyways.. I think I need to set an alarm in the mornings just to wake me up && make myself STAY up. then I'll get back on track right. but on the bright side, I've began to use my "old lady" pill box again. I know I need to use it, it just keeps me on track. I have bad anxiety issues && forget to take my pills sometimes. I freak myself out by going back n forth on whether or not I took em already. because I think of what could happen if I take em twice in a day..

I started vlogging! my youtube channel is called CF advocate<3. I only have 1video thus far, but I'm hoping to continue w it. I think it'll be cool blogging&&vlogging because its different to read about my life, but to see it as well :)

my boyfriend, Michael, got an air purifier for our room. I like it a lot actually. it may be all in my head, but it instantly made it feel like the air was just cleaner&&better! which I understand is the point ;) he's so good to me && has been so amazing thru this whole relationship. I know its hard to take all of my sickness on, but he's been so great. I was truly blessed when he fell into my life. I couldnt even imagine asking for anything better<3

random thought: lastnight I had the craziest dream about my back getting skinned so bad (by this group of guys) that you could see my whole rib cage. guess thats what I get for falling asleep to criminal minds ;)

xx

finally out of the hospital !!

hey y'all!

( upper right side of my chest )

so for my 3rd installment of my blog, I'm gonna talk about getting out of the hospital :) I got out exactly 1week ago && was in for a total of 3weeks. my longest stay thus far. but just before I got out, I got an access port placed in my chest. a couple of days ago I was able to take off the bandage && this is what it looks like now....

its healing && I'm getting used to it slowly, but its quite a change for me.. I used to be against this sorta thing because I never wanted something just staying in me for long periods of time. but in the CF world, we literally will do anything to save our lives :)

so w this port, I have to go to this place to get it flushed once a month. to avoid clotting n such. each time before I go in, I have to put on some numbing cream directly onto the site. because to flush it, they have to stick a needle into my skin to the port to access it. they told me that over time I'll develop scar tissue && wont feel the needle eventually. to be honest, I'm worried about the first time they do this. not because of the pain, thats second nature to me by now. but because it hasnt even been accessed yet && I'm sure it'll work fine, but theres still that worry of it not working.

it doesnt necessarily hurt anymore, I feel it less && less each day, but when I take a deep breath in or cough I feel this little tug almost. its not a worrisome experience, just getting used to it. I'm always afraid that the littlest movement will cause it to come loose or make my heart flutter like they warned me about. last night I thought I had some food poisoning from taco bell && threw up just a little, from which I was terrified of. luckily nothing bad came from it && it turns out I didnt have food poisoning. just another "its all in my head" situations. I have those a lot....

soo the day I got home from the hospital, my boyfriend had an awesome surprise for me.. he knew I'd been wanting to learn guitar for awhile now so he got me one!!
I'm so excited to learn! we still have to get strings for it, but oh well. just having it makes me happy. when I was little it was my dream to become a singer. but you need talent for that ;) I've heard of CF'rs who sing, which is amazing to me. but just learning to play would be enough :) for those of you who havent heard of them yet, check out the Furches twins! they're a pair of twins w CF who sing! here are their links: https://www.facebook.com/pages/FurchesTwins/231563516932721?ref=ts&fref=ts, https://twitter.com/gwynnefurches, https://twitter.com/JessalovesMJ, instagram.com/furchestwins, http://www.youtube.com/user/FurchesTwins.

as I mentioned in my first post, I was diagnosed at 10yrs old. so for the past 10yrs pretty much, I'd been fairly closed off about talking about my CF. of course my family knew. && close friends. && if anyone asked about details, I would tell em. but no one knew the depth. but at the beginning of this month, idk what happened, but I decided to become more open about it. I started this blog, discovered a couple social networking sites ( cysticlife.org && cysticfibrosisconnect.com ), && in the past couple of days alone I've made 50+ friends w CF on facebook! talking/comparing w others w CF about CF has really helped && I know it'll help a lot in the long run. I even find myself excited for thursdays just so I can blog about my life! :)

xx

" beauty is how you feel inside.
&& it reflects in your eyes.
it is not something physical "
♥