Here are some questions a girlfriend of mine asked me in an interview for a local paper she writes articles for, connected to our local radio station. She thought it would be good to advertise for our CF Fashion Show by doing a write up....p.s. tickets went on sale Thursday for our Fashion Show and are selling like hot cakes! (where did that saying come from? haha) they're going to go quick so if you want tickets email the committee quick!!
I'm posting some of the questions she asked me and what I wrote back, so that when I print off this blog eventually after transplant for myself... everything will be here in one nice place. So here is the write up.
What is it you love about fashion?
I love being unique. Expressing myself through what I wear just fits! I love one-of-a-kind clothes. I love the feeling you get when you know no one else has what your wearing. I like putting interesting tid bits, matching different things together. I love the hunt.
Where do you get the inspiration for your jewelry line?
All over. Sometimes I will design for myself and my girlfriends or my mom, even my grandma, something that I can see them wearing. Often I’ll be deisgning a piece, and be like “oh so and so will totally love this piece”, and I design with their style and their attitude in mind with that certain necklace. I’ll sometimes pick up an old brooch and I’ll design it to go with a new favourite top that I saw in a magazine. I love designing necklaces to go with outfits, which is why I like doing custom work. I like getting all the information about what a bridesmaid’s personality traits are like, and then seeing the dress she’s going to wear and creating a one-of-a-kind piece just for her outfit.
I also once saw a jar of buttons in a thrift store, and that’s how my latest line “Gorgeous Gal” was spawned. I thought it would be cool to wear vintage buttons. They just don’t make things like they used to anymore. Sometimes something will fall off of my studio desk and on to the floor, and it will land, in just the exact perfect way and then I’ll see a necklace or a bracelet that I could design.
How long will a piece take?
It totally varies on the type of material used, how much of a vision I already have lined up in my head, or whether I am winging it as I’m building it…how tired my fingers are….
What is your fav part of the process in the creation of your line?
The reactions of people. I love seeing the pieces on other people, because then I get to look at them! It’s hard giving them away, since I can never recreate that exact piece again! haha
Where and how can people purchase your stuff?
You can purchase my jewellery online at www.GotHattitude.com or at my studio. I also do home parties, where the hostess gets free jewellery or they can donate 20% of the profits to their favourite charity of choice.
RE: CF
How has living with CF changed your life? Or your view on life?
I always go by the moto, that life is too short, so don’t worry about the small things, just smile. Sometimes if people start talking about their old age or a new wrinkle…I have to remind them, hey, be thankful for that wrinkle, those laugh lines, your aching old knees…it means you are old. Your one of the lucky ones! Embrace your age, because some of us might not get those wrinkles, those laugh lines, those aching old knees…
I think I see things in a bit more straight, since I had to grow up so fast from such a young age. You have to be pretty independent and level headed to deal with all the medications, doctor trips, regimes that are involved with a CF persons care from when I was 6 months old, so I grew up pretty fast as a kid.
Are you ever scared?
I’m not so much scared for the actual operation….more excited for life afterwards. I am scared a little for the unknown for life post transplant. I’m scared of chronic rejection, or infection. Scared that my body will eventually reject these new lungs…transplant is not a cure…merely trading in one diease for another regime…but I have to stay positive and do everything I can to make sure that rejection does not happen.
I’m grateful that CF does not have to kill a person anymore. That there is an option of transplant, where as 20 or 30 years ago, there was never an option of transplant. I’m thankful that Toronto is the number one leading place for transplants in north America and maybe even the world. Modern medicine kind of blows my mind….Not so much scared….more ready.
Last summer when I first went for my transplant assessment, I was very very scared, because back then I was ‘too healthy’ for a transplant, but sick enough to get assessed, my quality of life was still good, so I was scared that they were even thinking about transplanting me then back then….as soon as I started being on oxygen and IV antibiotics ALL the time…my quality of life went…and so did the fear of transplant.. to a certain extent, since any option seems better then life right now.
I’m ready mentally now for this huge operation and whatever challenges it throws me post transplant, only because living breathless, attached to oxygen tubes, IV tubes…isn’t really life anymore…
Is there a cure?
There is no cure for CF…but thankfully there is the option of a transplant. Right now they are also working on growing your own pair of lungs through stem cell research. When I signed the papers with the surgeons, I also signed up for a research study where they take some of my stem cells, which will help them be able to hopefully in 5-10 years grow someone a pair of lungs with their own stem cells, thus eliminating all the risk post transplant, of chronic rejection and infection, the main problem with transplants why our bodies reject the new lungs would be eliminated if they were grown from our own stem cells, our own lungs without the disease CF. Then they would transplant those new grown cells in to the CF patient, and voila, no more CF lungs.
What about this double lung transplant? Will you be able to live normally?
YES YES YES. I cannot wait.
Well I guess that depends on your definition of normal…I guess it will never be ‘normal’? There will always be the fear of rejection and infection from my new lungs. There will always be doctor appts, and blood tests, a few pills and bronchscopies to make sure there is no infection or rejection, but it will be nothing like what I have been dealt with living with CF, and the appts get less and less as time goes on. I have talked to many CF people post transplant and they say they cannot even begin to describe to me what it is like to be able to breathe normally…none of us have ever experienced that pre transplant…to describe it to another CF’er they just can’t. I cannot wait to experience it. I cannot wait to jump out of bed, open a window, go for a walk, climb a few steps, have a shower…all without gasping as if I’m drowning.
How far down the waiting list for a lung transplant are you?
It does not really work so much like a list. It’s based on my blood type and the size of my lungs. They have to be a perfect match. I am listed at status 2, which is the highest most urgent status. So for my blood type and body size…I’m up there…definitnily high priority up there they tell me…now it’s just a matter of waiting for the perfect lungs to come.
How does it feel waiting on a pair of healthy lungs-something that everyone should already have?
It’s tough…but I say to my mom each clinic visit or each time we are thrown a new curve ball from this disease “hey…life would probably be boring if we did not have this challenge right? haha” ...
What is the first thing you’ll do when you get your new lungs?
Ooo good question. I have the longest list ever of things I will do once I have new lungs, go swimming, jump on the bed, climb the CN tower, NEVER use an elevator again, go biking,…as for what is the first thing I will do…I’m not sure….
Well I guess it depends when I get my transplant, if it’s in time for the fashion show, the first thing I’m doing is struttin’ my stuff down the cat walk! haha
What is the hardest part about living with CF?
I think one of the hardest part about living with CF is probably not being able to hang out with other CF people. They’re truly the only ones who know exactly what your going through, but due to bacteria and infections that we might pass back and forth to one another, we are not able to hang out. One of my best friends, has CF so we text, skype and talk on the phone…but it sucks so much that we can never have a cup of tea, or go to the movies together.
What do you do when you are scared or anxious? What calms you down and why?
listening to music, and looking at old photos. Music is the closest thing we have to a time machine I once read, and I believe it. Music transports me to other memories, or life before I got super sick. I like looking at photos as well before I got really sick. Remembering what life was like before I needed oxygen just while standing up out of a chair to get a glass of water, or grabbing a pen from a desk….before I relied on family and friends, to do such tiny little things, like grab a book from a table a few feet away for me because to get up would mean cranking up my oxygen again…friends and family are what get me through this. I have an amazing support system, and I am so grateful for everyone. I don’t know how I got so lucky.
How do you deal with friends and fam who are scared and worried?
That’s probably the tough part…it’s hard seeing your parents upset, hard to see them cry, or worried…but after transplant it’s going to be a whole new world…sometimes my mom says “oh boy Hattie on these crappy lungs is scary with what she does, new lungs and no one is going to be able to keep up!” my mom will have to retire from the ‘health care’ field for awhile after transplant…she’s been in it for 22 years…time for a break!
What is your biggest fear?
Sometimes I fear that I will get much sicker, while waiting for new lungs…I want to remain as strong as possible so that the recovery is much quicker, and easier and more successful. I don’t want to get even more sicker then I am already while I wait…I hope these new lungs come soon…they say “you walk in to surgery, you walk out”…I’m hoping to keep my muscles and strength up, so that things go as smooth as possible.
What is your greatest joy?
The thought of running down the beach in my bare feet at my cottage….running running running. I’m never going to stop.
RE: The Show
Why did you decide on a fashion show for your fundraiser?
Well I always did the great strides walk, the annual CF walk at the zoo. But I’ve done that so many years, I wanted to switch it up. My jewellery was showcased in a fashion show in Guelph for the ‘make a wish’ foundation, and I thought heyy I could do this and raise money for CF! I love fashion, and donate to a good cause. WIN WIN.
What is the goal of this fundraiser?
My goal for this fundraiser is to raise awareness about CF. It’s the most common fatal genetic disease affecting children and young adults in Canada…and no one knows what it is. We look ‘healthy’ on the outside…but we’re struggling to breathe on the inside
I also want to promote organ donation and the dire need for everyone to fill out their cards or talk to their families about what their wishes are. It’s so frustrating that people have do die waiting for organs…you can’t take your organs with you once your gone…so let someone else have a second chance at life.
What kind of events can people look forward to?
The farmers market! Check it out by clicking here! We will be there for four weeks in july, with a strut and sponsor red carpet, massages, and nail painting with all funds going towards the canadian cystic fibrosis foundation to find a cure for CF. We’re also going to be doing car washes at glen eagle golf course and around Bolton as well as selling red roses, the flower for CF around caledon east and orangeville.
Where can people find info on events?
www.CFforCF.com
twitter/CfforCF.com
or our facebook event group Couture Fashion for a Cure Found
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