hey Y'ALL

Alright so its just about 4am so i'm going to sum up the last couple days and make this short and sweet, sorry =( !!

For starters I am officially stuck on saying y'all (which is the one word Christopher hates the most) and starting to pick up the rest of the southern accent, but i guess thats natural once you start living somewhere new.. i hope? Or i am just crazy, which could quite possibly be true HAHA

 

Monday January 28th 2013
I had a Dr. Appt to get a Bone Density Scan. Luckily this went very smoothly and best of all QUICK!!! We parked the car in (VALET PARKING) which is pretty much our only option because of the oxygen and need for wheel chair. We were in the hospital less then a half an hour total. We came out with out ticket and were told it would be approximately a 40 minute wait.. ?WTF?!?! Oh well though, shit happens so we waited (impaitently) until we saw my car, actually moms car i am currently using until mine arrives this weekend, and sure as shit underneath the car behind the front bumper was hanging off. So me with my fiesty attitude bitch problem (lol) lit into the driver and security because it was not like that when we got there and i wasn't leaving until i knew it would be covered... So they sent down a supervisor who inspected and wrote down all the damage. I wasn't happy already as well as Christopher, and of course the supervisor was an arrogent prick! (EXCUSE MY MOUTH) =X 
We got it squared away so that their insurance will be calling in the next 2-3 days, so we better get that call, and just incase we dont i have their phone number etc. Anyway getting out of their was the best feeling in the world. We came home relaxed and Christopher made a phenonimal dinner of salmon fried up with onions, and mushrooms, MMMMMMM! Also some creamy chicken rice, and squash and zuchinni fried up in butter, Talk about mouth watering! We goofed off and had a good night, got to bed at a reasonable hour and to be able to get up and at em for the next days appointment.

 

Tuesday January 29th 2013

Today we got up did treatments, Chris made a great breakfast of eggs, toast, & bacon, yummmm! I showered and did treatments and off we went to the hospital for yet another appointment. (These are going to start becoming much more regular now). The appointment today was a little longer (almost 2 hours) but we got out and only had to wait fifteen minutes for our car and it came back with no broken pieces, thank GOD! =D Afterwards we headed out to look for something that was not pricy, but cheap and fun! We found a place called Frankies right across the road from our apartment pretty much. So we spent the day playing arcade games, go-carting, and having a late lunch at their bar and resturaunt. Everything was a great price and alot of fun. They also have a few rides and a pool that were closed down for winter, also a mini golf course that was shut down while it was being worked on, and batting cages that we didn't end up having time to do, but i am really glad we found a place right near us for a low cost and a good time. Then ironically at the gas station Chris ran into a kid he's been friends with since he was in school, Pat. I guess Pat moved down here right when Chris deployed with the Army to Afghanistan. And even more ironic he lives in the same apartment buildings as us just on the other side. Small world! We ended up going their to hang out and they caught up while i got to spend sometime with his girl who i got along with great and their baby (7 months) who is an adorable bundle of joy! We had a good time and got home late... tomorrow we have a day free from appointments (thank god) so we are going to bed now and hope to finish ALL of the cleaning and decorating by tomorrow night. Wish us luck and i will talk to y'all soon !!! <3 XOXOXO

 

Love Always,

Erica

stress. extra anxiety & true friends

Hey Y'all.... I am far from the type to seek pity but even from hundreds and hundreds of miles away I am still hearing rumors and bull crap drama. I already have enough anxiety and depression that were very well under control when i first was medicated, lately things have spiraled out of control and even with double the dose of medication it seems like nothing will ever be enough. I found out before I came that i had some shady friends, VERY shady. Shady probably is the nicest most appropriate word for this blog! Anyways, It made it simple to group together my true friends, the ones who care, would be here in a minute if i needed them, the ones who go out of their way to help me and do me favors, the ones who call and listen to me cry and blab on when i am pushed to my limits and have no other choice. Anxiety and depression of course come a long with a life terrifying event. Knowing i am going to be cut and diced up on the entire upper half of my body scares the crap out of me, all the scars that it will leave, and all the excessive pain i am going to go through..  i am a tough cookie, i've been through a LOT of painful things throughout the years and have grown to have a very high pain tolerance but i know that no matter how tough i am this surgery is a entire new experience for me and my body. The things i hear people say do not surprise me, especially the type of people they are which i will actually keep to myself. It hurts my feelings, i break down crying, and not because they're 'talking' about me; but because i can NEVER imagine someone i had been best friends with for years to be going through a life or death surgery, or suffering from pain and struggling in every aspect every day, i would never just stop talking to them, steal from them, or more importantly speak badly about them and just simply not give a shit. I guess when i can't see myself doing it to them, or anyone else for that matter, it really sets me off when they easily do it to me with no emotion and no problem. On top of that i have only enough money to get by and because i cant have a job (obviously) and christopher can't work cause he must be with me 24/7, that just goes to add more stress to not be able to go out and do stuff for ourselves. We ended up with a nice apartment and some money for food, and medical expenes, but i was so used to going out to hang out with friends (which is hard to make here when i am stuck home on oxygen all day and night) or i at least worked enough to go have a massage or manicure or grab a couple cute things at the store, now on the other hand my money is very important to use for specific things or else i will run out and then who knows what if i cant afford to stay here i guess i'm out.. but i am still trying to raise money and i found a couple people here i have found who are willing to let me put up donation buckets which im hoping to have soon. Anyways, So yes i got accepted to move forward with transplant, i should have been SO excited, which i was and dont get me wrong i celebrated with a small glass of champaigne, the love of my life, and two great friends over a delicious dinner! I am happy i will be able to breathe again and i pray things go well and smooth, but at the same time in the back of my head theres that initial fear that OH CRAP i might not make it out of this, whether its during surgery or days, weeks, months or years after. I pray for another chance at life with new lungs because I want to have a family, i want to get married and have a child we can call our own (which can be a problem to do before and/or after surgery) =(, i want to catch up on hunting with my father and snowmobiling or just messing around shootin the shit, i want to go walking with my mom and laugh until we cant breathe, help her cook and go to waterparks, theme parks, and all the fun things we've done, I want to be able to go running with my sister, goof off boxing and show her whos boss ;) , i want to visit her at college and dance, and be able to fly and visit the world, i want to go back to work and do well for myself, i want to swim and help dad go haying, or walk the malls with mom, dress up and cause trouble with sis, while i am walking or running drunk in my high heels fearless, go on road trips, hiking, sky diving, modeling, running on the beach, making love to my man the way i want to without getting discouraged or not being able to catch my breath or have a coughing fit, i would even appreciate to be able to give him one big real kiss without running out of air, kick the crap out of anyone who hurts me or anyone i love, pretty much just stand up for myself which i feel to weak to do, i want to get up in the morning and be motivated instead of getting up doing treatments and being ready for bed already, or having an anxiety attack, get a lump in my throat where i choke and pass out, over all i want to be 'normal' which is a word most CF patients never see. I want my 'old' life back, i may have struggled but hardly at all and i didn't feel so useless or helpless you could say. The things that are keeping me going the days i feel like its time to give up are, my amazing family supporting me and helping me with whatever i need done and pushing to keep going and do the best i can until my gift of lungs arrive, the motivation from everyone that my lungs will come and i will succeed, the entire group of people that went out of their way to support me, donate items and money, people who truely love and care about me and even strangers who want to see me breathing without struggle, my REAL friends who keep in touch, pray for me, worry about me, do favors for me and are going to go out of their way to visit me no matter how far away i am, my baby sister who is also known as my very best friend, whether she is there to tell me i'm a moron for something or shes so proud for something else, either way she loves me and she is there, my grandparents, aunts, uncles, cousins, and so on, just showing me they love me and reminding me just to make sure i don't give up, and last of all Christopher my amazing boyfriend, who has sacrificed everything to come and stay with me, cook my meals, bathe me, wheel around my oxygen or wheel me around in a chair, get me under control after each anxiety attack, and most of all love me through all my flaws and most of all be there every step of the way, proving his love and how much he cares for me. So once again i gotta keep reminding myself to try to look past all the depressing stuff, ignore the people who honestly dont even matter too me, respect an keep in touch with the people who care the most, and try to get past my ego and talk to someone so my anxiety attacks calm down before they take a major permanent toll on my body, sometimes i just need a hand to hold, someone to show their love, a letter, a card, a hug or a kiss, because its the little simple things in life that make me smile, keep me hoping, praying, and staying positive. Well i am glad i got that off my full of junk 26% working chest.... Sorry for the pity party as it seems but i know the people who read this are the ones who care and love me and will listen to me complain an blabber on about my problems, thats why you're reading my blog right? Well i just finished me more then annoying nightly treatment and of course Dr. appointments tomorrow, so its time for bed - the one place i can sleep and relax with nothing on my mind and a set of loving arms wrapped around me to remind me no matter how hard it gets he will always be there to help, whether its to cry or laugh together, love is a magical thing. Thank you all for your support and listening to me when i have finally broken down and told the half of it. Good night everyone, i hope you're all breathing easy and cherishing every moment while you can ! I promise to update everyone after my appointment tomorrow and see where i stand from there. XOXOXO

Love ALWAYS,
Erica Louise Ward

Back from a super BUSY month! =( (=

I am back again ! Sorry again to everyone who is trying to keep up with me but i had a CRAZY month! Christopher and i finally got to Raleigh, North Carolina Friday January 11th! We got all moved in to our new place; which i must brag it is GORGEOUS and i am so happy to be down south! My parents came down the evening of the 12th and brought all of my furniture. Everything has pretty much been set up, we have a few small things here and their for decorating and one more shelf to set up! Besides that, it has been almost 2 weeks here and i couldn't be any happier. So now i guess i have to tell you the news !!! But, first i want to keep going from when we arrived. 

After we arrived we got settled in as i said before, and my parents stayed with us for just about a whole week. Monday was my first appointment. My mom, dad, and boyfriend went with me to the doctors. It was our first day at Duke so we got a little lost but we ended up finding it just in time. They had a group briefing talking to everyone about the risks, the good things, financial things, everything about having to relocate (which i had already done) things about appointments, testing etc etc ! We then went and met with the blood draw office. Lets just say i'm NOT good with my blood OR needles! So twenty something tubes of blood later i was passed out in the big blue 'pass out' chair haha. I was very groggy for most of day after that, although directly after i was weak, passing out, low blood pressure and low sugar so it took us a bit of time to get out of there, but after enough lollipops, tootsie rolls, orange juice, and peanut butter with crackers i was well enough to be in my wheel chair without falling out Haha! all the blood work came back good and i was most surprised by the level of my Blood Count. Usually it is between 18-25+, but it was 13! which is good it means less infection in your lungs for the most part. I went from this appointment to chest x-ray and got those taken on my crappy lungs, cant wait to see a picture of the NEW ones! After that we went to meet with pulmonologist. We waited in the waiting room forever, my appointment was at 3:00pm and we didn't get seen until 730pm... so that sure called for a longggggg day and i felt the weakness and tired as hell the next day but we got home got a little sleep and prepared for the 2nd day.

Lets just say, I was exhausted, but we headed off early morning for the second day of appointments and meetings. I started off at the fitness center and we once again got lost and rescheduled that making it a total of 3 days in a row. Next (on day 2) we headed over to the other part of the hospital and met with psychology, she was so nice and great to talk to, i hope that will help some with my anxiety so i can get off the meds for it ! Next we were off to meet with financial supervisor, she was great too, what a hoot! they truely have a great team of doctors etc. So i still need to work on raising money to complete transplant but everyday we are a little bit closer! Anyways, I then had to get my blood oxygen level tested (ABG), which i must say is the MOST PAINFUL blood draw in the world! They put a needle into your wrist, but it must reach and artery instead of just a vein. My pain tolerance is amazing,  i cried like a baby. So that's how i know it really freakin HURTS haha but i got over it the next day it was a lot better. The last event of the second day was pulmonary function testing (PFTS) a few months ago mine were stable at 35%. They have now dropped down to 26%. This just goes to show my decline is getting more rapid as i get sicker. Anyway, i had to go in a box and doing several other breathing tests, which seriously KILLED my chest with the ongoing pain for that even though its being well treated. That is another thing, they are weening me off of my narcotics and benzos before i get transplanted and try to help me with other medications that are safer and smarter for someone with lung disease. The second day was really hard for me since Monday had been such a long day and the blood work had totally wiped me out! So i came home around 630 and slept all night basically, i had to be at the fitness center for my work out and assessment early Wednesday morning.

Next was day 3 my appointment was at 10am instead of seven so that was a start to getting caught back up on some sleep. We returned to the fitness center and met the man and woman i will be working with. We had a meeting first, just telling us all about the program, requirements, sessions, etc. After lots of chit chatting i finally got go for my 6 minute walk around the track. The 6 minute walk test measures how far you can go in 6 minutes. For transplant you have to be able to make it at least 1000 ft in 6 mins, well that's what they try to build you up by doing the rehab sessions, but luckily for me, in my six minutes, i walk around the track 1600ft. So i think this will  a little easier then i thought. =) But i am ready to work my butt off to get there.!

Alright so after all the appointments were finished they said they would meet the next Tuesday the 22nd and get back to me by Friday the 25th to let me know if i was accepted to their program. Well i found out Wednesday the good news. I GOT ACCEPTED TO MOVE FORWARD TESTING AND GET NEW LUNGS!!! =) The best part about this place is i will do some appointments and testing along with pulmonary rehab, but right after that they list me and it only takes me 12 day average before my lung come :) so yeah me and Christopher popped a bottle of champagne and had some friends over to celebrate! and dinner was wonderful ;) 

Anyways, i am headed for a bit to do grocery shopping and just to get out of the house <3

Thank you all for the support and love and checking out my page! i will post pics when everything is decorated and completely finished at our new home, we love it, but miss the families, friends, and dogs <3

Southern love; & survival of appointment #1

Hey y'all !! Sorry i skipped quite some time from blogging but I promised once I got here and had time I would begin posting often throughout my journey :))

Packing up our log cabin in the woods was a pain in the BUTT!!! Also very sad to leave behind , not only the home but all of our family and few true friends.

So off we went on our journey to a new beginning ! We struggled some on the ride down but we figured out how to tough it out and drive straight though and we made it to our new home in perfect timing . Somewhat a confusion at the beginning but we figured it all out and out new place is just perfect , along with STUNNING =)

So we walk in not sure about another 'home' being called our own. Took a quick walk through then tons of hugs and kisses :*** we LOVED it! There is washer and drier in one room then a master bathroom connected to master bedroom. Dining room, fully equipped kitchen over looking huge living room and has a bar on the island, sunroom , hallway with second bathroom on left smaller guest bedroom on right then straight back is large guest bedroom ! Okay I'm bragging but yeah we are SO happy that's what counts!

Mom and Dad arrived on Saturday and we got everything unpacked and all set back up. The house looks great and we only have some small stuff left to do before they head home at the end of the week , could have never done this without all their help! <3

Today is our first day at duke hospital ! All the meetings have gone well.. After 20 something tubes of blood I passed out 5x or more but anyways !! We are going to lunch then back to meet the doctor at 3! Appointments are done for the day after that and start again before 8 am tomorrow =< I hate early mornings haha anyways we are headed out now that X-rays are finished so to sum it up I am great, can breathe better in the air down here, love my best friend, boyfriend and family and. Another huge thank you to everyone who helped me raise money or donated their time, anything at all , everyone's been a great help and I am so grateful=))

Out with the old ; in with the new :)

But I sure miss my sissy and my few favorite girls back in VT <3

Good day/bad night :-( feeling WEAK

Today I got to have my last x-mas with my gram wards , I got to see my Nana , ,my uncle & his son Dakota, my sister and her boyfriend Bradley , my parent's, and of course my gram, gramp, and christopher, ( for new readers that's my boyfriend ;-) .... okay so we got there late like always (haha) had a wonderful dinner , opened stockings & presents, and visited well we finished with desert . . . .hell yea for CHEESECAKE :-)    anyhow I came home and needed my oxygen for awhile , me and a great friend Brooke went for a trip to McDonald's which is usually about 40mins each way ... well tonight it took two hours or more each way and the roads were terrible in the snow storm, very slippery but we made a fun time out of it, YOLO B-)  anyhow I brought my oxygen but luckily didn't need it ... however I had an awful coughing attack--- these are scary ... consist of hard coughing, wheezing, chest tightness, oxygen drop, blue face, pass out.... sometimes seizures etc.. tonight chris was here @ home with his sister and her boyfriend , so he helped me hook up to oxygen and keep waking me up got my anxiety meds , and pounded on my back so I could get some mucus up (SUCCESS) got my pain meds into me finally chest comfort and comfortable in my mind set... I am still embarrassed about oxygen, attacks, and this shitty end stage CF crap!!!

Alright now going to sleep forever hoping to catch up with an old friend and her daughter tomorrow, not enough time to see everyone I want to before we move down south! Which I am sooooo stoked about but I'm gonna miss y'all

Okay good night, will write again asap ! Thank you all and lots of love :-) :-*

Xmas day ! ;)

hello everyone !!!! merry christmas : 
today is always a fun day for me, iLOVE presents!!!!& also very tiring.....i have a hard time at the end, more so a very tiring .... i push to hard and enjoy soaking up all the family time i can, plus this year is bittersweet because this year i'm headed for transplant in less then two weeks=(?=) not sure... anyway xmas @ our house is done got some amazing gifts from the boy frannn :) now headed to my parents, then my grandmas, then chris's family x-mas okay so wish me luck an merry xmas to all xoxo 

Bed time

Before the oxygen and bipap I give the love of my life my kisses and there may be no proof but I got mine earlier from him =D niteee