Michael is doing very well :) he had an appointment last month and his lung function has gone up from 40% to 47% :) thank you vest and breathing treatments. His job has him working hard to so he gets that yucky stuff coughed up :)
Our son just turned 4 hes a doll but a terror lol.
My job is insane. I cant remember if i stated this before but i work for our police dept. Im in dispatch...and some things are really hard about my job. Some days you wanna go home and work out your stress till you fall asleep and forget about the crappy day you had
Other days i feel happy and its fun. but arent most jobs that way???
And i believe i failed to announce that i got my 65 Red Roses dvd in awhile back. I still cry when i watch it and i miss that womans spirit and heart. Love love love :)
Time to go start supper :) STEAKS so yummy and maybe some corn.
- Current Location:down stairs :)
- Current Mood: cold
- Current Music:tattoo disasters on the tv
WEEEEELLL what to say today lol. Lately my days have been full of work, swimming, and spending time with my loved ones.
Michael works alot we have awkward schedules. We only get a couple hours at night together and lunches. And a whole sunday but thats all.
His treatments are getting expensive :( it's tough... cheepest part is his albuteral (sp?) i suck at spelling fyi. ANYWAYS
I got alot done today all thats left is dishes...boo...
Well i think im going to go...this was a short post just wanted to type...i like typing :)
back to watching sweet life of an american teenager :)
- Current Location:home
- Current Mood: bored
- Current Music:tv
never much to do...in a small "'city" theres never anything to do. We have a zoo...pool...a "strip mall" and tons of mexican resteraunts :/ but theres not much entertainment around here.
I work alot. Deal with alot of stupid lol. But yesterday I did have the oppertunity to expierence what it was like to hear the tornado sirens go off and then have to run to work as fast as possible.
Since I work for our police department every time the sirens go off everyone who works in dispatch (me and others) have to go to work to be prepared to answer phones and do whatever it is we can to help out.
LUCKILY the tornado only lasted like 4 mins and it was 3 miles north of town lol. So if wasnt completely a false alarm but it was exciting.
Anywho im rambling, im watching The Big Bang theory, so halarious lol. However i probably should go its going to be bedtime soon for the little one and myself included lol.
Ive had good days recently and so has michael. We got to go out on a date last weekend and see some friends...drank and loved and had tons of fun. Of course the next morning his poor CF body was feeling it :( but things have been good. I'll talk to you all later
- Current Mood: content
Today im having some trouble...and im wondering...is it possible to mourn over someone you have never met?? Or am i just really that overly sensitive??
My heart IS ACHING so badly, im crying
crying and feeling so deeply heavy hearted..my body feels like it's being weighed down to where i cant move or have any motivation..
I really dont think anyone is seeing these posts but im mourning (if thats what this is) over Eva.. (65_redroses) ive read her blogs and never got to meet her...she was so intamit and caring and FULL of LOVE...
i think about her all the time, i think of what will i do the day michael gets to that point.. god i wish there was a cure,
To many tears, to many heart aches, to many lives lost.
If i could just get people around this area of where i live to give a shit i would be so much happier...Everyone seems to selfish to care about others anymore...its sickening and makes my heart hurt even more.
Am i crazy for hurting so much??
I feel like i should be doing something, running around with posters and putting them up everywhere about CF,
i feel likt i should be making things for donation money or doing my part
but where do you start in a place where noone cares?
where do you start when you really dont have that much money to put in?
I just feel helpless
I feel like im not helping the cause
Sometimes im going to rant and just feel and thats ok right?
I bought her DVD so maybe i can share the film around with people i know and move on from there...
i just dont know what else to do yet
Guess we will see
Eva,..im missing you today...even though we never met..sounds crazy but its true..
- Current Mood: numb
- Current Music:the televison
Now lets see.. work consumes my days becuase i work 12 hr shifts and listen to some very interesting people call and let me just tell you some people just...dont have emergencies ;)
Michael has had a good day only that we got another medical bill in the mail... :( depressing... from all the meds he has to take and nebulizers and checkups its just so expensive :( i wish there were better ways of managing...like maybe ummm a CURE? ya that would be a god send...just saying
I just wish he could BREATHE, i always wonder what the future will bring him and I...i always catch myself thinking, what if?...what if he gets seriously ill and looses even more lung capacity? what if he doesnt grow old with me?..what if him and i can't have children becuase invetro is to effin expensive?...
But think i think to myself...why live with what ifs? just live in the day ;live in the now and let the times unfold...right?
well its bedtime sadly so thats all for tonight!
- Current Location:on the coutch (favorite typing spot ;) )
- Current Mood: chipper
- Current Music:discovery channel in the background
First off...i hate being sick and secondly there may be typos and not very good gramar on my post but i really don't care today :)
I woke up frustrated becuase i was visiting my bathroom and throwin my guts into the toilet...(to graphic?)...i would much rather be at work making money... i find it funny that the man with cf sometimes has a stronger immune system than i do :(. But again i woke up to him hunched over coughing so hard but you could tell the mucus was just stuck in his throat which then caused him to gag :(.
Speaking of cystic fibrosis...its SO HARD to get anyone around here where i live to give a rats a$$ about this disease, i've been trying to think of ways to make a difference around here but it just is a dead end...I dont have alot of money, im defiantely not on the rich side of the totempole. But damn its just frustrated and makes me depressed sometimes.
Anyone else have this problem?????
Ugh i should probably go lay back down..fever and chills..so lovely.. maybe ill dream about a way to make a cf cure? :) i can dream...
- Current Location:at home on the couch
- Current Mood: sick
- Current Music:chirping birds outside through the window
Where to start... this is all new to me and I tend to be a person to ramble on so forgive me in advance ;)
I want to start out by saying I decided to join LJ after I had learned about Eva M. or aka 65_Redroses. Some may know of whom I am speaking of, however, sadly, most don't...at least not yet ;). Did I know her you may ask? no, I didn't but god do I wish I had. For the ones who do not know who I am speaking of go to http://www.65redroses.com, or look up the LJ 65_redroses
You see...my boyfriend, my love has Cystic Fibrosis..So I was/ have been truely touched by her story. So I have decided to try and find others who have cf or have a family member, lover, friend, or all of the above that have cf so I can have a place to come and talk to at least someone.
I'll start by saying michael (the bf of 2 years) is at 40% lung usage, which is NOT the worst however not the best. I still have days where I forget he has a disease while other days im sorely reminded... It aches my heart when we leave a restraunt or when we are first waking up,after all the mucus has settled in his lungs and he just coughs and coughs until sometimes he just throws up. Sometimes I just need a place to go and talk to anyone who understands...I would just talk to him but I don't like to burden him with it all the time because he doesnt like it when I worry... Anways I just thought I would start off there..
For anyone who reads this..if anyone does..know that on my journals I will be talking about life...cystic fibrosis...random things...so please if you like to talk or anything of the sort dont hesitate to send me a message. In kansas I do not know many people that know about CF..it is not very talked about here where I live.
I am going to end here since I do tend to ramble :) just know that here on my LJ there will be no secrets and there will be honesty...and some bluntness :) thanks.
- Current Location:home on the couch
- Current Mood: blah
- Current Music:comedy central playing in the background