So, it has been a long, LONG time since I did a blog.
A ton has happened, most of which I'm not really going to get into because it's old news.
Short version: got referred to another hospital for my cardiac issues, found new heart problems, started new meds, increased those meds twice, if I increase again I'll be on the max dosage and then will be looking at surgery because my problems will continue to increase over time. I am officially on disability after over a year of fighting for it. I want to move out but realistically can't afford it, not if I want to stay in NJ (which I do). I stopped my mood stablizers due to side effects. Without them I seem to have zero motivation for anything and it's starting to bum me out. I haven't been able to travel due to my dog's health. He is 14+ years old and his health seems to go downhill if I leave. My last trip was in July, I went to the Transplant Games of America in Texas with a good friend. It was a great experience but my dog didn't handle it well. So I'm stuck home until I'm forced to go to Florida in November. (or until he dies *sadness*)
Now for the fun stuff!:
I am now an official intern for the More Than Just Me Foundation!
Why? Well because the MTJMe foundation developed something called the Saltwater Challenge. (inspired by the Ice bucket challenge) and yours truly not only participated in it but also recruited the marketing team at the global medical supply company BD to participate as well. Okay, I can't take all the credit, my mom works at BD. Anyway, roughly $600 was raised. My mom also applied for company gift matching, and it was approved. So all in all around $1100-1200 was raised. I was contacted by the founder of MTJMe with the opportunity to become an intern for them, and of course, I jumped right on that! We all know I bleed CF awareness. MTJMe focuses on raising awareness for multiple causes including helping the homeless and Cystic Fibrosis. I'm super proud to be a part of the awesomeness that is MTJMe!
Things to check out!:
My Saltwater Challenge video!
The BD Marketing Team doing the challenge!
Showing posts with label donations. Show all posts
Showing posts with label donations. Show all posts
Friday, September 12, 2014
Thursday, March 17, 2011
Katie's Conquest!
Katie hates to ask for help, she is usually a very quiet and independent person but she can no longer fight this battle alone. So I have decided to step in and get involved, to share her story, and give her some hope!
Katie is in chronic rejection and her transplant center is no longer going to fight with or for her, so she needs to switch centers ASAP as her condition is deteriorating rapidly. Her goal is to get switched to Duke University by next month, the problem is she doesnt have any finalcial help or means to get her there. She is also very unstable in her health to the point where she needs there to help her in case she cant help herself. So she looking for someone in the area (of Duke) who knows anything about transplant patients..
Please let me know if you can help in anyway...
Back story on this doctor:
his name is Dr.Baz.
he has a history of giving up on CFers.
my friend Kitty (Stephanie Steele) for one.
he feels his job is done once the transplant is complete.
he is not willing to try different medications.
if the first cocktail he puts you on doesnt work. he gives up.
he doesnt believe there is a difference between acute & chronic rejection.
he needs to lose his medical license! so we can stop losing CFers!
also, when she asked him if she could get a double lung instead of single lung he threatened to take her off the list entirely!
HE NEEDS TO GO!
PLEASE HELP KATIE GET ANOTHER CHANCE!!!
Tuesday, February 15, 2011
Excitement Overload
Where to start where to start?!
I'm selling purple CF wrist bands that say "Breathe Easy Cure Cystic Fibrosis"
$3.00 each! message me on facebook for more details!
I'm also selling Scentsy! Check it out!
Its awesome stuff! Much more fiscally responsible than a yankee candle as they last much longer and the fillers are only a few dollars. they're flameless, there hundreds of warmers to chose from, and over 80 fragrances.
Work has been absolutely insane lately! I worked th past 4 nights. 3-11:30pm. last night I worked 1-11:30pm. and we were short like 3 nurses.
Friday was an unpleasant night, it started out with us calling a Rapid Response at 3:30. thus pushing us back about 2hrs. The family of this person hadnt been fully educated on what "DNR" meant, so they were following the nurse around all night. Finally when his blood pressure got around 40/30 she had to explain to them that he was going to die. and he did. right at the end of the shift. I cried. Its never easy to lose a patient. Especially when they are so loved by their family.
Saturday wasnt too bad, it had its crazy moments, but overall, a decent night.
Sunday night we had this woman come up from the ER. from the moment I saw her I knew it was going to be an interesting night. she was fussing and screaming. turns out this little old woman was 90 yrs old. and God Bless her! she put up some fight! If I have that kind of energy when I'm 90 that would be awesome. but anyway. It took myself, a male tech, a nurse & a house doctor, and 45mins later we finally had wrist restraints on her. It took about 12 attempts before we finally got her BP too! unfortunately she was very confused, kept carrying on about dogs coming down from the ceiling and such. I must say though, thankfully she was in for dehydration, because if not, we would have been covered in spit! We all walked away with bruises from being kicked and punched, and scratches from being bitten and clawed at.
And last night we (Monday) had a man detoxing, and I've seen him sober, and hes really a nice guy, but holy hell, when he is detoxing! I ended up having to call Code Grey (security) and like 6 big muscle dudes had to come hold him down so we could restrain him for his own safety, as he cant ever stand up without falling over. and he pulled out his IV about 4 times, and trust me, getting an IV in a man who just wants to flail around is no easy task. and his flailing and desire to get up lasted the entire 10yrs I was there.
ALSO!, this weekend I've organized a 'Lungers' playdate! lots of my lovely CF friends are coming out to spend the weekend! I'm totally psyched!!
And finally, dont forget to sponsor me in this years greatstrides walk for CF!!
(I'm also selling Tshirts for Bush's Team Breathe!)
I'm selling purple CF wrist bands that say "Breathe Easy Cure Cystic Fibrosis"
$3.00 each! message me on facebook for more details!
I'm also selling Scentsy! Check it out!
Its awesome stuff! Much more fiscally responsible than a yankee candle as they last much longer and the fillers are only a few dollars. they're flameless, there hundreds of warmers to chose from, and over 80 fragrances.
Work has been absolutely insane lately! I worked th past 4 nights. 3-11:30pm. last night I worked 1-11:30pm. and we were short like 3 nurses.
Friday was an unpleasant night, it started out with us calling a Rapid Response at 3:30. thus pushing us back about 2hrs. The family of this person hadnt been fully educated on what "DNR" meant, so they were following the nurse around all night. Finally when his blood pressure got around 40/30 she had to explain to them that he was going to die. and he did. right at the end of the shift. I cried. Its never easy to lose a patient. Especially when they are so loved by their family.
Saturday wasnt too bad, it had its crazy moments, but overall, a decent night.
Sunday night we had this woman come up from the ER. from the moment I saw her I knew it was going to be an interesting night. she was fussing and screaming. turns out this little old woman was 90 yrs old. and God Bless her! she put up some fight! If I have that kind of energy when I'm 90 that would be awesome. but anyway. It took myself, a male tech, a nurse & a house doctor, and 45mins later we finally had wrist restraints on her. It took about 12 attempts before we finally got her BP too! unfortunately she was very confused, kept carrying on about dogs coming down from the ceiling and such. I must say though, thankfully she was in for dehydration, because if not, we would have been covered in spit! We all walked away with bruises from being kicked and punched, and scratches from being bitten and clawed at.
And last night we (Monday) had a man detoxing, and I've seen him sober, and hes really a nice guy, but holy hell, when he is detoxing! I ended up having to call Code Grey (security) and like 6 big muscle dudes had to come hold him down so we could restrain him for his own safety, as he cant ever stand up without falling over. and he pulled out his IV about 4 times, and trust me, getting an IV in a man who just wants to flail around is no easy task. and his flailing and desire to get up lasted the entire 10yrs I was there.
ALSO!, this weekend I've organized a 'Lungers' playdate! lots of my lovely CF friends are coming out to spend the weekend! I'm totally psyched!!
And finally, dont forget to sponsor me in this years greatstrides walk for CF!!
(I'm also selling Tshirts for Bush's Team Breathe!)
Saturday, January 29, 2011
Here it comes again
Yeah, in another 'I hate CF' mood.
went to a friend's funeral last night.
I did ok for the first few mins.
but it didnt last. I cried for about 1 1/2hrs straight.
and as we all know crying always makes breathing more difficult.
so of course I had a bit of an episode. started wheezing and gasping in the back of the room.
and I'm the idiot that left her inhaler in the car.
a random lady handed me a tissue, which didnt help the breathing situation, but it gave me something to squeeze. which helped.
one thing the deacon said hit me. he said "there is no good age to die, but 25 is way too young"
and its so true.
CF, you need to take a time out and think about what you've done.
because as it stands now, the median age for someone with CF is 37. this means that 50% of people with CF will die before that age.
with CF walk-a-thon season quickly approaching theres never been a better time to get the word out about CF. its time to get more people aware. more people donating. so that more research can be done to prolong the lives and eventually cure those with Cystic Fibrosis.
Picture I made in memory of Tina <3
4/6/85-1/23/11
LINKS OF INTEREST:
Instructional video about CF patients that Tina & her father were asked to participate in. She does a fabulous job, and her father really hits hard on the reality. its about 20mins. but its worth the watch!!
My GreatStrides donation page.
went to a friend's funeral last night.
I did ok for the first few mins.
but it didnt last. I cried for about 1 1/2hrs straight.
and as we all know crying always makes breathing more difficult.
so of course I had a bit of an episode. started wheezing and gasping in the back of the room.
and I'm the idiot that left her inhaler in the car.
a random lady handed me a tissue, which didnt help the breathing situation, but it gave me something to squeeze. which helped.
one thing the deacon said hit me. he said "there is no good age to die, but 25 is way too young"
and its so true.
CF, you need to take a time out and think about what you've done.
because as it stands now, the median age for someone with CF is 37. this means that 50% of people with CF will die before that age.
with CF walk-a-thon season quickly approaching theres never been a better time to get the word out about CF. its time to get more people aware. more people donating. so that more research can be done to prolong the lives and eventually cure those with Cystic Fibrosis.
Picture I made in memory of Tina <3
4/6/85-1/23/11
LINKS OF INTEREST:
Instructional video about CF patients that Tina & her father were asked to participate in. She does a fabulous job, and her father really hits hard on the reality. its about 20mins. but its worth the watch!!
My GreatStrides donation page.
Subscribe to:
Posts (Atom)
