Thursday, December 13, 2012

Momma Duck

just a quick recap of what has been going on with my mom. in no particular order. (and grammatically incorrect lol.)
I also have no idea why the hell it keeps posting with the white background thing. GRRR

Mom had been sick for 7 weeks with pneumonia. she ended up in the hospital.

they still don't know what she has. they do know it's NOT contagious. they sent samples of everything to a few different places (CDC..ect)
but she saw 3 different pulmos and they all had the same reaction..."wow" and my mom was like "is that a good wow or a bad wow?" obviously it was a bad wow.
her sats had been stable and then one day they randomly went to the low 80s on 2L of o2. so they did a bronch and sucked out over 3 cups of mucus. when I met with her pulmo (the one she ended up staying with) I asked about different diseases/conditions and tests and results. he actually said the words "you know too much" after he left my mom goes "okay..what did you say and what did he say?" he actually said the words "you know too much".
once she was "stable" her docs decided it was safer to send her home to be in my "fully capable hands" than to have her stay there and risk contracting another infection. if she gets sick again in the next few months it could end really bad. I had to order her a HEPA filter mask for if she leaves the house (for dr appointments and such, also for when the construction starts on my house (from hurricane sandy)) she's not allowed to go Xmas or grocery shopping, or anywhere with big crowds without her HEPA mask. and I went over the house with the pledge & antibacterial wipes. she's always had a pretty non existent immune system (respiratory wise). and no one really knows why since her blood cell count is fine. years ago her doc told her she had Chronic Bronchitis (a type of COPD) but her new pulmo said that was unlikely since she never smoked. although when he did the bronch he said it did have the appearance of COPD. (you can now see why my health is so stubborn lol)
anyway, the doc said it will be a few months before she even starts to get back to normal. =[
 so yeah, that's what's going on with momma duck.

P.S. funny story.
my mom wanted a mask attachment for her neb so she can read while she does treatments. so my dad, trying to be helpful, went to the pharmacy and got one. my mom comes into my room later and goes "dad got me a mask for the neb but I can't seem to figure out how to get it on" I go upstairs and look at it. Silly daddy got a Pari mask which doesn't fit on regular nebs. my mom turns to my dad and goes "I appreciate the effort hun, but leave the lung stuff to the kid"

I love my family 

Friday, October 26, 2012

My Fighting Zebra

My Fighting Zebra, Melissa, is finally at rest.

Melissa went into hospice in early March, and was not expected to last more than a few days.
but true to form, she managed to make it for another 7 months.

It is hard to explain the feelings I have right now. Of course it is heartbreaking to lose someone like her, but at the same time, I know she was ready to be free of pain. In a way, I was ready too.

After watching her suffer in pain and struggle to breathe for so long, peace became the blessing. We had talked about it many times, knowing there was no amount of medicine that could even take the edge off and that there was no chance of improvement, we began accept and even welcome the "end".

Melissa was a true inspiration to anyone that knew her. Despite her illness she always managed to smile and laugh; And those around her couldn't help but do the same. Her joy was contagious and she brought out the best in people. Melissa's love for her family and friends was second to none, her loyalty and generosity unmatched. She had a heart of pure gold. Not a day will go by without me remembering her. I have only known her for about 3 years but in that time our bond became one of the strongest I've ever had.

Zebra & Ducky. 
Best Friends Forever.

Breathe Easy my Fighting Zebra,
may you finally have the peace you deserve.

March 12th, 1983 - October 24th, 2012

Saturday, September 8, 2012

Delightful Dying with Daniella

yeah, it started with D puking. IN MY CAR!!! (well first there was the driving in insane rain, but I'm used to that)
...well...she puked in a bag, which of course had a hole in it. so needless to say as soon as I pulled over....I puked. (due to my newly unimproved gag refles) so yeah, there was a rite aid across the street. we went in and got some resolve, some paper towels & lysol. after we sprayed down my car we then walked into this crazy/cheap/trashy clothing store because D puked all over herself. so she was forced to wear pants that said "sexy girl" down the leg. I LOLd.
but yeah, then we had to ask someone for directions to the hiking place (the GPS wouldn't find it) so I found this guy who seemed confident he knew where it was, of course he was wrong. I finally pulled over once we had nearly gotten back to the highway. I used the GPS in my phone and found it. we finally got there, checked in and wandered off to the trail. when I stopped for lunch D just munched on some bread crusts for fear of puking again. then randomly she felt fine. which was awesome.

we followed the trail like good little hikers, it was full of super steep paths. we got to this one point and bam, we lost the trail. I decided to wander down to the waterfall to take pix and then we could just head back in the direction we came. and I noticed a random tree with blue on it (we were on the blue trail) so I looked around and finally found some other trees with blue. we start following them and come to marker number 15, which is supposedly the end of the trail but it's the middle of the woods. so we're like WTF. I kept following the blue and found marker number 14. and I was like...ARE YOU SERIOUS. so somehow we wandered off the trail, and landed on the other side of it, which still ended in the middle of the woods. so we followed the trail (I guess backwards) and since it was backwards it was allllll up the steep hills. we finally came to the place where we lost the trail. and I'm like "how did we miss this, the trail is clearly marked" well when we got to the top of the hill and looked down the trail we just climbed....guess what, they marked the wrong side of the trees. therefore standing at the top of the hill, you would have no idea that that was the trail (there are other unmarked trails all over so it's hard to tell where you're supposed to go without the markers) so yeah, we decided to just go back up through to the beginning of the trail (ALL the uphill) which still leaves me with the question "WHY THE HELL DID THE TRAIL END IN THE MIDDLE OF THE WOODS"
and yeah, WE WERE DYINGGGGGGGGGG. I also managed to sweat through 3 shirts, my pants & the straps of the backpack I had on. Heat and humidity are not my friends.

So we get back to the main building, I checked us out, and as I'm getting into the car, the sky opens up into a massive thunderstorm. freakin POURING. but whatever, we get back onto the highway. and guess what, suddenly the world forgot what rain is. D & I were joking that everyone was like "what is this mysterious liquid falling from the sky? how do we act? what do we do?" point being, we passed a plethora of accidents. (one of which JUST happened, like right in front of us, and another one was just a single car that spun out and destroyed itself, the driver had already been taken away in the ambulance by the time we got to it) and yeah. there were just idiots everywhere. seriously, people forgot how to drive.

so of course as we're driving home D's grandma calls saying they have dinner reservations at 5:30....our ETA is 5:50. so we're like freaking out. hahaha. they got the reservations changed to 6 something but she still had to be home by 6. well yeah, we got back to my house at 6:03. then D had to drive to her house, and change, by 6:15. I mean she lives around the corner, but still lol.

Also, my gas light decided to come on and I was like AHHHHHHHH. but that is a problem for another day. THE END

Sunday, August 26, 2012


This is a serious post that I felt the need to post because I'm pretty fed up with people these days.

Rape is NOT a joke. under any circumstances. I don't care if you think you're being funny, I don't even care if you're quoting someone or something else. If you feel the need to bring it up, do so with 1 or 2 people who you know very well. Rape should never be brought up in a social setting, a room full of people, some of whom you don't know. You have no idea who could be in that room. You don't know if someone in that room was raped. Recently or in the past, rape scars you for life. Anyone who has gone through this horrific experience, knows all too well that their life was changed forever. And to hear someone, whether it be a stranger or a friend, "joke" about rape. It hurts. A lot. It can trigger flash backs, fits of rage and overwhelming emotions.

For those of you who don't know, I was raped July 5th, 2005. I was 16. I knew the person, I was dating him. I never pressed chargers. I didn't even tell anyone for years. I regret not going to the police now, and I would advice  others in the situation to do so. It will be hard at first, and that is what I was afraid of. But in the end, it will be worth it. Especially if you go to the police right after it happened. The more evidence the better. It will result in the man being put in jail and marked as a sexual predator for life. Which can help keep it from happening to someone else.


If you are someone who feels the need to joke about rape, or speak lightly of it, learn to think before you open your mouth. You may not be trying to be hurtful or offensive but I assure you, you are! Honestly, it is not something that should ever be joked about regardless of where you are. But if you're stupid enough to do so, you're probably not bright enough to even realize how ignorant & heartless you sound.

If you have been raped....I urge you to seek help, even if you choose not to go to the police, talk to someone about it, family, a friend, a therapist. Don't wait, it just makes it harder.

Friday, August 17, 2012

Happy 23rd Birthday Cindles

The memories we made will last forever.
Days and nights spent together.
Thick and thin we stood strong.
Through happiness and laughs, through struggles and tears.
Our friendship rose above it all.
The sound of your voice, the feel of your hugs,
your light that always shown through. 
I'd give anything to have that back, to see your face once more.
But I'll keep you always in my heart, until we meet again.

Happy 23rd Birthday my Beautiful CF Warrior. 

I miss you. so so so so so so so much. 
it still hurts like it was yesterday. 
you mean the world to me 

Breathe Easy angel 

Tuesday, July 31, 2012

FINALLY! ANSWERS! (and more)

So yeah, had a pacemaker check, electrophysiologist & cardiologist today.
next 2 pacemaker checks are oct 30th & january...4th? lol I forget.

also, epic, EPIC news.
for 7 years I've had a "mystery" heart issue that doctors couldnt quite figure out that has kept me from exerting much energy. my mom & I had begun to accept that this was as good as it was going to get. but guess what. THEY FINALLY FOUND IT!
along with the Afib which we already knew I had, the also found PVC (Premature ventricular contraction) (also know as Premature Ventricular Complex or Premature Ventricular Beat)
and to make things better. It can most likely be treated!
I start medication tomorrow, at a small dose 4xs a day. With a follow up appointment September 5th. If I'm responding well to the meds they will increase the dose until I get stabilized.
I was so excited. I cried. I can't believe they finally found it!
it was such great timing too, since I brought my cardiologist a present today, and today, she deserved it 100 times over! I freakin love her <3

Cardiac love:
Also on a side note, one of my best friends, Ann, who I have known for 7-8yrs is finally coming up from Virginia to visit. She is a heart patient as well, my #1 CHD sister! I'm going to be a brides maid in her wedding and this is the first time we're meeting in person. its true love right here.

I didn't really get any good news as far as anxiety. It has been really bad lately but I can only take low dose Ativan. Unfortunately due to all my heart issues, I can't take anything else. not happy about that, but ya win some ya lose some I guess...

I also got the clear from the cardiologist to take birth control, as long as its estrogen only. Gyno is hoping this will ease my back pain. which would be totally awesome. She did find some other abnormalities, so I'll see her again in a month. *Fingers Crossed*

Tuesday, July 17, 2012

Health. Stress. Chaos.

I wasn't really sure where to mention this but basically the entire remainder of the month of July is all doctor appointments. *le sigh*

As many of you know, I got my new pacemaker last week. that in itself was a fiasco. but I'm not going to post the whole thing here, its on my caringbridge anyway.

So yeah, I've been dealing with a ton of stress lately.

Trying to get all this disability/legal crap taken care of & being broke all the time doesn't help.

But this is basically what's going on on the health front:
I had a bit of a traumatic event happen this past week that I really have only talked with my mom about. Every time I so much think about it I start crying.
There are also a few anniversaries of friends passing. which happens often. as well as it being Cindy's birthday a month from today. My anxiety level has been through the roof, I'm constantly shaking & sweating. 

now moving on. 

like I said, I had my surgery last week (1 week ago tomorrow). I had my heart set on this new pacemaker taking care of all my problems and making me feel almost "normal" again. I know that was a stupid way to think about it, because realistically I know that A-fib & my pacemaker stuff aren't really related.
so yeah, I got the new pacemaker. and the next day was great, I went up the stairs twice in a row...just for fun. and because I could. unfortunately that was short lived and I'm back to not being able to much at all. During the last few weeks with the old pacemaker, the pacemaker was on "safe mode" (safe mode is explained in my previous blog). so for the most part I was pretty stationary. In a wheelchair, dropped off by buildings so I wouldn't have to walk, even a shower chair. What I'm getting at is a didn't really exert myself enough to cause many episodes of A-fib. That's a good thing, right? NO. it's not. during that time I was on a 30 day heart monitor to monitor the frequency of my A-fib episodes, but due to the fact that I wasn't triggering many, I obviously didn't get many recorded. Thus having it during that time was somewhat pointless. I'll probably end up needing to do it again. not that it matters. but I would have liked to have at least part of my summer to enjoy and not worry about trying not to kill myself.
so yeah back to the whole "thinking the pacemaker would fix everything" part of this. I did. and it was stupid of me. because while my heart rate can actually keep up with me if I do something like go up the stairs (meaning I can put forth bursts of energy when needed) but overall, I still have no energy. extended walking still exhausts me. and I'm just tired all the time. (what's worse is, having insomnia, I cant sleep at night. ever.)

so I see both the electrophysiologist (pacemaker doctor) & my cardiologist on the 31st for some follow ups. and also to find out if I need another heart monitor or if she got enough info from the last one. I'm hoping she did because I would now like to find out what my treatment options are. I know there are some medications. most of which I need to be off mood stabilizers in order to take (which sucks, but its the lesser of the 2 evils I guess). I will also need to be admitted to start these meds because they need to watch how my body, with all its issues, will react to the new meds. Then we need to HOPE that medication will help, because in some cases, it doesn't. I'm not sure I'm ready for some of the alternative treatments. At least not yet.
So I'm just really hoping meds will fix it. because if not, I'm facing either painful treatment or living with it. neither choice will be very easy for me.

Now. moving on.
While I usually don't consider a dentist appointment to be a very big deal, due to my current stress level and the fact that the dental situation I'm in now could have been prevented if my former dentist knew what the fuck he was doing. all in all I have 8 cavities. and they can't use the usual numbing medications on me due to my heart problems. so yeah. it is incredibly, incredibly unpleasant. I had 5 of them filled today, which was....ugh. the poor woman felt so bad because she knew she was hurting me. (which obviously wasn't her fault).
I also saw the Oral Surgeon today. He did some xrays and told me that I certainly need my wisdom teeth taken out, to which I replied "I could have told you that". anyway, the bottom ones are impacted. top ones are not, however they're growing sideways because they cant fit in my mouth.
here is the funny part. his original plan was to do the removal with just a numbing medication. after explaining all that to my mom he turns to me and goes "assuming that's okay with you?" and I was like "uhhh. NO! not at all!" so he now needs clearance from my cardiologist to put me under (which won't be a problem) so that part is taken care of. I just found it humorous that he thought I was going to be okay with that.

Finally, as most of you know. I suffer from ABSURD amounts of back pain. almost constantly. if you're a doctor and are currently thinking of the question that always comes next: "Where would you say you're at on a scale of 1-10 with 1 being the lowest?" my answer would be "somewhere between 6-9" because while it is always there, I'm not always in tears over it. on average I'd say 7ish. but it gets worse at night (part of the reason I don't sleep)

you have been warned!
I will tell you when its safe to read again.

I'm going to see a Gyn for the first time ever on thursday, as I'm about 85% sure my back pain is related to my girly parts. there a few reasons why. I've had this problem for years but as I've gotten older, its gotten worse. by like....A FUCK TON. lol. It gets even worse for the weeks or so before I get my period. Then it seems to stop during the 3 days that I'm bleeding most heavily. Then it comes back full force the last day of my period and continues on all month, increasing again before my next period. and the cycle continues.
My moms is thinking I have a tilted uterus or there is a swelling problem. I'm not really sure because I really don't know anything about Gynecology. like I said, I've never been to one. I do know, that I've never been able to insert a tampon properly. I have used them for the past....4-5 years or so. but I've never been able to bend, sit, or move too much while wearing one. I just recently (like 2 months ago) figured out how to get it in so it doesn't hurt, and that works maybe 70% of the time.
My concern is that she will tell me it's something that she can't do anything about. I will honestly lose it. because I can't take it anymore. You may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in.


Again, you may think I'm exaggerating but anyone who has spent extended periods of time with me can tell you how much pain I'm in. 

There are a few things I am able to do to lessen the pain, but none of it lasts very long.
heating pads work if the pain isn't absurd. stretching helps for about 20mins or so, then the pain comes back. walking helps while I'm doing it. but once I stop the pain comes back. sleeping on hard, flat surfaces help for a day or so but after that, it doesn't matter where I lay down. I will sill be in pain. Massage helps but again, it lasts for maybe a day at best. And in case you forgot, I'm broke and can't afford to keep getting massages.
Tylenol & Advil don't do jack shit. I have a prescription muscle relaxer which doesn't do much at all. and I have a prescription for oxycodone. which does work. but I really don't want to be relying on that. I take less than I'm supposed to because I'm afraid of getting addicted to it. and my doctor is reluctant to give it to me, for the same reason.

So in the event that this new doctor I'm going to see tells me she can't do anything, I'm going to try acupuncture, which I'm wanted to try for a long time. and if that doesn't work I'll go see a pain management specialist. and lets hope that works.
because if not, then I'm out of ideas and out of hope.

Friday, June 22, 2012

more pacemaker drama & vacation

So as you all know, my pacemaker is dying, and I've been fighting with the docs/insurance companies to get it changed.
the insurance companies like to wait until the last min (when the pacer goes into safe mode)

well I had a pacemaker check scheduled for June 19th. and my genius ass missed the appt. so I called them later that day to reschedule. we ended up rescheduling for yesterday. and (as I suspected) they decided to tell me its time for surgery, the battery needs to be replaced. well of course they tell me that then. because I was scheduled to leave for FL this morning.

anyway, these are my posts from yesterday:

"I KNEW this was going to happen!!!!!!!!!

the but NO! they wouldn't listen to me! 
pacemaker people said I need the battery replaced! 
and of course I leave for FL tomorrow morning. or at least I'm supposed to! 
UGGGGGH! they're gonna call me back in a few mins to let me know if I can still go!"


I officially CAN go to FL, however,
no matter what I do (in her words) "you could run a marathon and your heart rate wont get over 65"
so basically I'm not allowed to do ANYTHING remotely strenuous. wheelchair in airport. no beach walking. no kayaking, no swimming. nothing =\ which kinda sucks. but at least I can go!"

Recap: battery is in safe mode, meaning HR wont get over 65, and it is only pacing the ventricles (usually mine paces the atria as well) 
I can't really do anything physical 
my appointment with my electrophysiologist is scheduled for the 17th. and he'll probably schedule the surgery for the next day. I also still have my heart monitor on 24hrs a day for 2 more weeks due to the A-fib. 

but I'm here in FL now. so I'm a happy duck!

Friday, May 25, 2012

Cardiac Update

So today I had a cardiologist appointment.
Found out quite a few things,
1. my atrial wire is NOT shot!
2. still cant change pacemaker.
3. I'm having major A-fib.
4. med changes are needed.
5. surgery will be same day :)

So we are setting me up with a heart monitor, and starting a few new meds. one of the meds (anti-arrythmic) I need to be hospitalized for a few days to start so we'll plan that.
another med is baby asprin, which even though its a tiny, tiny dose, I'm still nervous about because as some of you may remember, I had quite a problem with asprin once before.
ambulance, liver failure, kidney failure, lost my hearing, landed myself in ICU for a few days. but I think it will be fine. I'm just nervous.
I will also be starting another medication to maintain an even pulse.

in order to start the first one, I need to come off my mood stablizer. so I started decreasing that today, and will stop it on tuseday. Not sure what they'll put me on in place of that. but I suppose we'll figure something out.

I see my cardiologist & electrophysiologist on the same day, in 6wks. after my 30 day heart monitor. so hopefully by then we'll have figured out what meds I'll be taking.

June is a busy month for me, and I need to be feeling my best. so fingers crossed everything gets fixed! lol

the endddddddd.

Tuesday, May 8, 2012

Pacemaker/Heart Transplant

Ridiculously pissed off! They wont change the damn pacemaker yet! I legit cried in front of them and it triggered an arrhythmia, but nope! They won't change it because it's not in the "safe mode" meaning I won't drop dead due it failing. but I am beyond upset. My current quality of life is CRAP! I can hardly leave my house anymore. If the simple act of crying causes A-Fib, you can imagine what actual exercise would do. but anyway, they say it has "1-5 months" so I'm stuck like this until PROBABLY August. Which infuriates me. But we are going to speak with my cardiologist to see if she can talk them into doing it, because the main problem right now is the Atrial wire. It's pretty much fried, and I've been having a FUCK ton of A-Fib.

My mom is at the point where she's ready to take me back to New York Presbyterian. I'm honestly gonna start a petition, not just for me, but for anyone with a pacemaker. It's not all about how it looks on paper but how I FEEL! Quality of life! Its absurd! Perhaps in old people they dont notice the lack of energy as much because well...they're old, and things have slowed down for them a bit anyway. But in young people, it makes a HUGE difference!

 While my mom was at a conference in New Orleans last week, she met with & had lunch with 2 DOCTORS. not lay people. but DOCTORS. She was telling them about whats going on with my pacemaker. One of the doctors asked her, "why don't they just do a heart transplant?". My mom was pretty much speechless.

 (If you are a lay person, and don't understand the reasoning, I shall explain: if I had a pacemaker & ICD and was still not doing well THEN they would resort to transplant. But as of now I don't even have an ICD. And for the most part.(except for when my battery / wire are fried.) I do Okay. (not including lung probs) To do a heart transplant would mean I'd be in for a lifetime of anti-rejection medication, I would never be able to have kids (due to these meds) would probably need another one about every 10 years. Chances are I would be dead by 40. at this rate I can live until 64. (although this is speaking strictly cardiac, and given my lungs & other events that may come into play, 64 is highly unlikely)

 anyway, theres the update.

Thursday, May 3, 2012

My Dear Alan

My dearest Alan,

Today (5/3/12) marks 3 weeks that you're gone and I've been struggling with what to write to you.
You were/are by far one of the most amazing people I've ever been lucky enough to call a friend.
I will forever cherish that day we met (in person) May 25th, 2011. (even though Alli couldn't come =(...)
It was less than one year ago, and even though it was raining and my mom felt the need to tour an old church, we still had fun. And of course, who could forget that terrifying ride in the Ferris-wheel, it was bad enough that I'm afraid of heights, plus the rain didn't help. But it was time together and I will never forget that day.

And when I think of you
I will forever think of those skype chats we had for days at a time.
I will forever think of how loyal a friend, how devoted a husband to Alli, and how pure at heart you were.
I will think of all those times you were there for me, no matter what hour. You listened to what I had to say, never once did you judge me. I could tell you things I couldn't tell anyone else and know that it was safe.
I will forever think of the laughs we shared.
I will forever think of you when I hear a P!nk song. (especially "Perfect")

I know that my life, will never be the same.

You left a hole in my heart that will never be repaired. And while I am comforted to know you are finally at peace, it still hurts to know you're gone.

I love you more than you know and I miss you every day.

My Shiny.
My Best Friend.
My Hero.
My Alan. <3

Breathe Easy

June 24th, 1984 - April 12th, 2012

Wednesday, March 28, 2012

More stuff from my brain

I just have a few things on my mind.

figured I'd write them somewhere.

first off. Mebsie is here, for my birthday. On Monday we went up to Conneticut again, to see Melissa & Emily. I know I had said that I wasn't going to go back up, however Melissa had to be moved to a facility because the home care nurses were unable to control her pain. The facility is much closer to me (1 1/2hrs) and its also about 10mins from Emily. So we had a nice day.

yesterday was my 23rd birthday, meaning I am now 21yrs past expiration date, lol. (I was not supposed to live to see 2) I had a pacemaker check in the morning, battery has 1-8 months left on it. The rest of the day I spent in bed. I was super cranky, and not feeling well. I did get a bunch of camera accessories & a gift card for a massage, which is awesome.

I leave for the condo on April 3rd, I'm excited to get out of here again. I'm really wanting to go on a road trip but right now my mom doesn't want me to go. I'm frustrated. I hate not doing anything with my life, but I've been told I'm not mentally stable enough to survive in the real world yet.

there is more, which I'll get back to later....

Tuesday, March 20, 2012

Real Life

for part of the past 2 weeks I've done things that normal people do.
went to a bar/karaoke, a party, hung out with friends. I do wish I had other friends that lived near me. I'd love do do things like this more often. *foreveralone*

Saturday, March 17, 2012

one of the hardest things I've had to do

I know I say this a lot, but this is one of the hardest things I had to do...

As many of you know, one of my dearest friends Melissa Hauser is on hospice. (end of life home care) 2 weeks ago yesterday we were talking and I asked her if she thought she would make it to Monday (which would be 3 days later) and her reply was "I'm trying hun, I'm trying".
the next morning (saturday) I backed up my shit, and got in my car, and drove to her. I spent that day with her before returning to Emily's house, which is where I was spending my nights. The next few days I made the drive from Cheshire to Vernon & back to visit Melissa. Then I decided to give the family more alone time and started going only a few days a week. It has now been exactly 2 weeks since I got here, and true to form, Melissa is still hanging on. Unfortunately I need to go home on Monday. It breaks my heart, but I have 10 doctor appointments to make, and go to, before April 3rd. I also may be getting surgery during this time as well. It has also been 3 weeks since I've seen my mom, and she is getting VERY anxious. Yesterday I said my goodbyes to Melissa, for the last time. We hugged for a long time. It was so hard, walking out that door and knowing I'd never be back. I'd never see her again. I'd never see her sweet and loving dog, Abby, again. We would never make our heart hands again. It felt so wrong, I felt so cold, just walking down her driveway. I sat in my car, just looking at her house, crying, for a good 15mins before I drove away, for the last time. Now I know, Melissa is not gone yet, however, I will not be back. It is a 3+ hour drive, and it makes my mom very nervous. I will most likely drive up for the service, when that time comes. But that will be different, I will not be driving up for a visit with my dear friend, I will be driving up to mourn her. Melissa is an amazing friend, and it kills me that I cant be there with her. I love you Melissa.

Hand Hearts Forever <3

Saying Goodbye

Saturday, January 28, 2012

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.



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