Be Bigger Than Yourself! (and an update)

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!

Update on my life (cindy)

I really don't know where to start.
I was sick from Thanksgiving till New Years.
in and out of the hospital a few times.
most of you already know the details on my hospital stays so I'm not going to go into that. My last hospital stay ended early January, after being discharged I basically moved into the ICU waiting room at Columbia Presbyterian in NYC. I had to be with Cindy. I spent countless days and nights at her bedside. tearing my heart apart by the minuet. watching my best friend go through this. it was more then I can even explain.
I always imagined she'd get her lungs in time. I wasn't prepared for this. I......I will get back to this blog later.

TO BE CONTINUED...


Resuming:

I always thought she'd get her lungs. losing Cindy was never an option. never a possibility. I knew she had CF, and I knew her life would be shortened. but it was not supposed to happen now. she was supposed to get those lungs. she SHOULD have gotten those lungs. I blame the Hospital in so many ways and due to my emotions, I am going to write them all out.

: They waited FAR TOO LONG to list her, they kept giving her excuse after excuse. they waited until she was on her death bed before a doctor from St.Joe's called and told them to get their fuckin acts together.
once listed she got a few false alarm calls. One of those calls, SHOULD have been hers. The donor family consented to organ donation, but the decided they didn't want to donate the lungs. for God knows what reason. I was beyond furious. once she was in the hospital, dying, they chose to put her on ECMO, and put in a TRACH to help her breathe. Cindles began having seizures and was taking a long time to wake from sedation. so the ingenious hospital decided she was no longer fit for transplant due to minimal brain activity. Even though the girl was still squeezing my hand, and saying that she wanted the transplant.


I was not prepared for this. Seeing her that way. Being there, Holding her hand, crying with her family.
hugs. prayers. tears. whispers. love.

I spent 2hrs talking to her from 4am-6am the day we lost her. She shared some of her wishes, and planning things we would do in her honor.
holding her hand and watching her slip away. was the hardest expirence of my life.
I'll never forget her. Ever.

Breathe Easy Cinthia
8/17/89-1/12/12

Saying goodbye & more

looks like I'm going to have to leave my job.
I'm not entirely sure how I feel about it.
I love my job, truly. I just cant really handle it anymore.
looking for a new job, something in photography, phlebotomy, or even a secretary.


I feel like something is missing from my life. I really cant figure out what it is.
I do know I'm missing my CF friends. I know that distancing myself is the best thing for me. But it still saddens me that I cant be as involved as I'd like to.


Medically have been having issues. Just not been much into discussing it.

I have to say I'm thankful for my friends who have been supporting me through this shit time in my life.

I love you all

Update

hey everyone,
yeah its been awhile,
I've been going through a lot of hard times and just not been up for anything really.
been suffering from depression really bad. did some time in a mental health program, changed some meds around. etc. I'm still seeing a psychologist & psychiatrist.
some medical issues have come up but I'm not going to go into that.

I'm just really messed up emotionally right now and I don't know where I want to be in life.

incase you havnt noticed I deactivated my facebook, the world of CF is far too overwhelming right now, and I can't handle anymore sadness/loss/sickness/grief in my life.


I love you all.

Hospitalization

Hey all,
as many of you know, I've been in the hospital since Tuesday.
Past few weeks I've been feeling worse and worse. finally after a bit of nagging from my friends, mom & boyfriend I decided to go to the ER. didnt plan on getting admitted. but I did. not long. 3 days. it wasnt bad (except the food was horrible).
the room was amazing. the nurses, techs & phlebotomists were good.
I did flip shit on one doctor (new guy) who was completely arrogant, and WRONG! lol.
he kept avoiding my questions and then tried to explain something about a pacemaker to me. and he was dead wrong. which made me mad. so yeah, I yelled. and stormed out of the room. I didnt see him after that lol. a different doctor came in the next day, he was great, answered all my questions. gave me the names & numbers of a bunch of new peds cardiologists. and a new pulmonologist. also gave me some new meds and put me on nebs Q4hrs for the first few days, then Q8. then once daily. then as needed.

so yeah, initially they thought it was congestive heart failure. which thankfully it was not. I do however have bronchitis, and fluid around my lungs.

which means antibiotics, nebs, & water pills! OH JOY!

anyway my BF rocks for taking me to the ER, staying with me for hours, picking me up, and babysitting my car. (on top of the fact that he just rocks in general!)

Cardiac Update

Just got home from having my pacemaker checked.
They say my battery has another year on it, but then again, last time they told me that, I was on the table 2wks later!
they Also saw an increase in arrhythmias, I've had 13 since the 28th of feb.
and although they dont last long (usually about 2mins), they're actually affecting me. I'm always tired lately.
my pacemaker has been switching modes more often too.
(10 times, in the past 3 days) this happens when my heart rate goes up to 155+
(which it should never do) so yeah, they had me in the chair for over an hour,
called in the doctor who was there. who proceeded to call my doctor.
and suggested a holter monitor. yet again. I also may be switching hospitals!
which is exciting. *claps* anyway. thats about it

Emotions

So much is going on in my head and my heart. I'm not sure where to start really, so I feel I'll just ramble. Deal with it.

It seem like people are dropping all around me. with the most recent being my own uncle.

its causing regressios in my depresion. I've been feeling the need to cut again.

I'm moody, irritable, lonely all the tme, never hungry or starving, I havnt slept in 4 days. I'm having problems at work. I dont know what to do anymore.

I'm losing it. I've got an increase in my anti depressants and a new sleep aide. but this sleep aide is Ambien, and I'm afraid to take it.

I've been having palpatations, I shake all the time, I cant breathe, I feel like I'm going to break.

I'm scared.

My shrink basically told me I need to pull myself together because I'm not the only one in my family that needs support (I.E. my grandmother and my mom)

I know that, I understand that, But I cant help it. I'm cracking. I want to cry all the time.

I feel like my friends dont want me around.

the only people I've been able to talk to are Mebsie, Maria and Daniella.

I cant deal with people and their rumors and lies and drama.

I just want to get away from everyone.

But I cant.

Help me.

Someone. Help Me.