Branding

Well, well, well...

Copyright "Off the Cough"

There you are! Yes, here you are.

Reading my thoughts.

Today is branding day

Got the logo, I like it.

Got the name, and I like it too.

The ideas are coming, the tunes are coming. --> yes, there will be some tunes... eek

Clearly not me singing, I don't think anyone wants to hear that. bahaha

It is all coming together.

Cystic Fibrosis isn't just something I was born with; it is something I am known for, something I have lived with. Kind of like the unknown twin sister, who is living in constant annoyance. We have a love-hate relationship. Basically, if she hates me, I make her love me.

It's an honour to be able to share my experience. Being one of the rare CF adults who is closer to 50 than 40. It's not scary, it's amazing. Going from telling my family, "Don't expect her to go to kindergarten." Who's laughing now?!? Me, I'm laughing now.

There are stories here, and you can read them. I am always around for the new people to come out and play.

Short and sweet post today, because I am having a hard time recalling what I was doing. Ahh, old age, I love it!!! 

LOVE LOVE LOVE

~A

CF Adult Comfort Kits

Good evening my friends,

So, seeing as 2019 is a major milestone for me on more than one level, I want to share with you my current project.

This project is called the "CF Adult Comfort Kit"

This isn't to say that children aren't affected by CF, because obviously they are.  but it seems that everywhere we turn the kids get all the support.  CHEO is a great place, I had never had to experience the life lived by so many in those walls.  So all I know is the adult admissions process, and the fact that i have had to be admitted at the last minute.  Trust me, it's a shitty experience.

Adults are outnumbering the kids now, so i think it's time that we get some attention.  Here is my reasoning...

I will be celebrating my 10th Lung Transplant Anniversary on the 16th of February, AND i will be celebrating my 40th birthday on April 30th.  To say that this is a small feat , would be a lie.  Damn, i am working hard at keeping my lungs healthy, my kidney's are struggling, but it's a small price to pay, I have an extra 10 years where I wouldn't have had an extra 2 weeks.

This is just the beginning of many more wonderful years with my family and friends.  those friends who are in my life, are pretty much family now.  They stuck with us from the beginning, no questions asked.  So let's talk about these kits a little more.

Inside these kits we will hopefully have... wait, i never told you the magic number of kits... 50!  My birth year (40) and anniversary (10) years added together. Ok, on to the fun stuff...

Kits contain the following (hopefully)

- twin size quilts

- snacks including trail mix, candy (Swedish berries and fish)

- Ground Soap soap bars - Donation 

- Shampoo/conditioner

- Razors and shaving cream

- Tooth past, toothbrush & dental floss

- USB of a video greeting and music videos & music - Courtesy of Moi!

- Pillow case

- Slippers/socks

- Lotions (hand/body)

- Letter and words of affirmation and love and support.

- Puzzle books and notebooks

I know, this seems a little unrealistic, and I agree... somewhat, but until I know that the adults in Eastern Ontario are taken care of, then maybe one day, all the adults across the country will be loved and appreciated.  We are the ones who went through the drug trials, and such to entertain the thought that there would be a cure, or even a partial cure for us down the road. 

If you would like to send some supplies for my kits, i am open to any donation.  If you have an amazing idea to add to the kits, I am welcome to suggestions.  No suggestion is to little or too big.  I will provide an address to you if you want to participate in this great initiative.  

Special thanks to Krispy Kernels for providing some snacks for the kits, Ground Soap for the soap donation and for the possibility of 10 quilt donations from the Quilters Guild in Cornwall, Ontario.  you have helped to make this gift possible.  I can't do this all on my own.  i am counting on my friends and family to help me raise the necessary donations.  

This initiative starts today and I am hoping to have them ready for distribution on May 1st, 2019.

Love to all who can helps and love to all who want to but can only help by making a letter donation to the Adult who needs a little love.  these kits have to be created with love.  Imagine your loved one is being admitted to the hospital and needs some comforts of home, that maybe your contribution will make them feel loved, and admired.  I wouldn't be here without the sacrifices of those before me. like Dexter, Marc, the Richer's and so many, many more who never made it to their adult lives.

Thank you all, Love to all

Ali

Let the countdown begin...

Let the countdown begin...

What countdown you ask!
Well there are 2 amazing countdowns to be aware of.

Are you ready for this...

COUNTDOWN #1 - February 16, 2019

This is a monumental date, because on this day, someone I have never met gave me one of life's most precious gifts, most selfless act possible, and went into the history book for being the first Double Lung Transplant on the very first Family Day in Ontario.

If you haven't guessed, although I am sure you have, February 16, 2019 marks the 10 year anniversary of my Double Lung Transplant, that was necessary due to end stage Cystic Fibrosis.  I have my donor family to thank as well as my amazing doctors and nurses.  My surgeon Dr. Du Perron in Toronto, my fantastic Cystic Fibrosis doctor, Dr. Shawn Aaron. I also have to send a shout out to Dr. Ficara, because he was the one that suggested I get assessed for transplant.  Now if i can find him, thank him properly, he has no idea as to the outcome of his persistence.  Hmmm, how to find him!  lol

I will never forget that day, not only did i travel to Ottawa with my bestie Rebecca her man at the time Chris, who is now her hubby. Rebecca was with me in the clinic, when some comments were made by the new Nurse, Ena.  I told them that I wouldn't be admitted to hospital, over my dead body, Ena's comment was... "Well isn't that ironic". 

Rebecca and I looked at each other in astonishment.  I think that was my lowest point, and to have her there made it somewhat more tolerable. We then met up with Rebecca's brother Matt, who is like my little brother, at St. Hubert's on St. Laurent.  We drove up in a red Honda Prelude, me coughing and spitting my germs into an empty PEPSI can.  My beverage of choice. lol

*Please note that Ena, is the best nurse.  She has learned a lot about CF patients, how our minds work, and what we go through in one day, far surpasses anything that any one person would encounter in their lifetime. 

We kick some serious ass.

COUNTDOWN #2 - April 30, 2019

This day, this very amazing and wonderful day, will be celebrated with friends and family, it will coincide with the 10th Anniversary of my Double Lung Transplant, because on this magical day, I turn... wait for it... 

40

Aaaaahhhhhh, I cannot believe that I will be 40 years old.  A birthday I never thought I would see.  After being told by doctors to not expect to make it to 20, let alone 40. This is so awesome.  Every morning the beauty of a deep breath awakens my soul, the bright sun shining into my face reminding me, if the sun can come up every morning, I can sure as hell wake up too.

Everyday... grateful, is not just a word in my vocabulary, it's my meaning, my life, my salvation.

I welcome you all to embrace the days you have with love, gratitude and most importantly a sense of fulfillment, you woke up today, you took a breath today, you put you pants on one leg at a time.  But the most important of these things, is that your family, your friends and your loves will be able to hold you, love you and thank you for being here.  I now I thank you for reading my blog, for advising me on the simple things.  Knowing that I can hopefully help you, and help your loved ones gain insight in CF, transplant and living life in the moment.

We all have a role to play in the successes of others, we also ave a role to play in our failures.  Don't remember them as failures, they are lessons yet to be learned.  Wake up, energized and ready to learn something new about yourself, your friends, your family.  Believe in today!

With loads of love, I thank you!

Kisses

~A

Jessica "Jess" Forsyth June 14th 1989 ~ July 19 2014

Jessica Lynne
"Jess"
Forsyth
June 14th 1989 ~ July 19th 2014

FORSYTH, Jessica Lynne

Peacefully on Saturday, July 19, 2014 at the Ottawa General Hospital at the age of 25 of Cystic Fibrosis. She was born June 14, 1989 in Ottawa to John Forsyth and Brenda Deslauriers. Jessica graduated from Philemon Wright High School (Gatineau) and remained in the Ottawa area. Jessica loved being active and social. When not with her family, she could be found with friends in the market, mudding in the valley, working with the CHEO telethon or raising awareness with Sixty Five Roses. Jessica is survived by her parents John and Brenda, stepmother Pat Lydiard her sister Ashley (Greg) Mouland, nephew William Mouland, grandmother Helen Forsyth, lifelong friend Beverley Part as well as many aunts, uncles, cousins and countless friends. Jessica had requested that those in attendance be comfortable – casual attire is encouraged. Friends and family are invited to visit at the Central Chapel of Hulse, Playfair & McGarry, 315 McLeod Street (at O'Connor) on Thursday, July 24 from 2-4 p.m. and 7-9 p.m. A Celebration of Life Service will be held in the Chapel on Friday at 4 p.m. followed by a Reception at Stanley's Old Maple Farm in Metcalfe. Memorial donations can be made to Cystic Fibrosis Foundation or the Make a Wish Foundation.

As you can see, I have lost another angel this past weekend.

This was the first time i met Jess;

February 6th 2007 ~ Ottawa Senators Sixty Five Roses Gala

Emilie Joinette & Jessica "Jess" Forsyth
Sixty Five Roses Gala 2007

Jess was one to roll with the punches, laugh at anyone who makes an ass of themselves, and is the first to tell you to shut up and let her finish what she was saying.

About a month ago, Jess was in the hospital having been admitted for the usual Exacerbation CF sufferers often become admitted for. We talked for a good 2 hours about anything and everything, she told me about her boyfriends, and her family and the love of her life, her nephew.

Sounds a lot like me, when it was my turn to be in the hospital for months on end.  Difference between Jess and myself.. I wanted a transplant.  Jess felt that a transplant means someone has to die, she has to WAIT for someone to die so she can live.

For 25 years old, and having been admitted more than I have in my lifetime, she was ready to throw in the towel.  She was sick and tired of being sick and tired.  I used that same line on Derek when I had my Port put in,  I was on morphine and couldn't sleep. I was like Jess said, sick and tired of being sick and tired.

Jess fought, and fought.  I won't say she didn't because I saw her do it.  She was weighing in at less than 90 pounds when i saw her, was tough on herself for not gaining weight.  She was wise beyond her years.  She was a good ol' Mudding girl, loves bikes, 4 wheelers, mud, trucks.  Jess had these amazing blue eyes that would speak to you all on their own.  You just had to look at her, and it's like anything that you worried about, was released form your mind by just seeing her smile, looking into her eyes, and listening to her laugh.

Jess, I may not have been your best friend, or even a really close one.  But I was grateful that you allowed me the honour of getting to know you, and being a sound board when you needed one. I am sorry I wasn't there to say good bye to you in person, I can only hope that you know how important all mu Cysters and Fibros are.  I hold you all close to my heart.

Those that have passed, and those who in the fight right now, can rest assured knowing that i will continue where you left off.  I will celebrate you and your life.  I will advocate since you can no longer do so.

I pledge to all those I have lost too soon, Eva, Emily, Emilie, Tim, Jess, Marc, Dexter, Meg and so many others.  I will make sure that everyone knows your story, hears about who you are, and what your life meant to me.  I will take my storey and make sure that wherever anyone treads, that we are the first people they think of. 

I hope that I can live up to your expectations and bring results like you have.

To those who have loved ones who are struggling with any kind of illness, let them know you aren't forgetting about them, that they are still in your thoughts all the time, no matter where we are.  So much has happened in our young lives that no one will ever understand.

Transplants are not a cure, they are a life line to give you that extra time.  Depending on how well you treat your body you can go on forever.  I hope to, I really do.  I want to be around when they mention to all the world that the cure for Cystic Fibrosis has been found.  I only wish it would happen sooner rather than later.

For all of you loving and caring for someone who is ill, I want to thank you for all you do.  Doctors, Nurses, Personal Support workers, and the admin staff of all the hospitals I have been in. Thank you, thank you, thank you!

With love and a wounded heart

~Ali

My Mom...

If there is positive people in your life, then life flows much more smooth.  I have the best of the positive genes that come from the one woman who makes me laugh, smile and cry all at once.  that's my Momma.

I Decided I needed to make a post about my mom.  She has gone through a lot in her young and vivid life. Having my older sister and myself at a young age, took care of us, worked hard to provide us with the things young children need.  Food, Shelter, warmth and lots and lots of love.  My mom is one of those people that when you meet her, you can't help but love her.

She embraces all the things in life that i can only strive to be.  She raised 4 beautiful young daughters, who I have to say are pretty damn hot.  If it weren't' for the best of grandmothers in the world, whom I like to call Meme, we wouldn't be here.  I have positive ladies in my life.

Can you imagine being a young mother of a two year old, and having a new baby who isn't doing the normal things that babies do.  not eating, pooping like mad and well for being a happy baby, no one would have thought there was anything wrong with me.  a CF baby is something that in the 70's wasn't the best of results.  Being told your daughter won't live to see her fifth birthday.  My mom, pretty much told the doctors to take their pamphlets and shove it.  I am so proud that my mom ignored what they were telling her about my fate.

A chubby little monkey came home from CHEO, love that place, eating, laughing smiling and being that best of babies.  I can only remember my mom's positive thoughts growing up.  Encouragement to join gymnastics, she probably though seeing as I was doing cartwheels all along the house, that I might as well put it to use. did that for many years, then became a coach. 

ME: "Can I try dance Mom?"

MOM: "Sure honey"

That lasted 5 years

ME: "Heather does Synchro, can I try that too?"

MOM: "Sure Honey"

That lasted 5 years, skipped two levels in the first year, made the team to represent Cornwall in the Ontario Games.  Took Synchro in Montreal with Carolyn Waldo's coach for three weeks at the age of 13.  Oh the possibilities if I kept going.  No regrets!

ME:  "Mom can I try figure skating?"

MOM: "Sure Honey"

Lasted 2 years, skipped three levels in the first year, won best first year performance.  MVP I guess you could call it! Stopped that when my coach after the second year was 10, I was 12. I felt insulted.

ME: "Mom Allison and Crystal and I want to go into ARMY Cadets..."

MOM: "Sure Honey"

At thirteen this was the best thing i could have ever done.  I was so loved and respected there.  Partly because I had Cystic Fibrosis and they thought I was going to be a charity case, that I wasn't going to be able to keep up. But I proved them wrong and made my mark on the Corps.  I won Best Female first year cadet, and Cadet of the year in my first year. I was a member of the  Colour Party and the Drill team.  I was so excited to wear a quilt.  I was also a member of the Skill and Arms team my first year.  It was a blast, we were shooting rifles with live Amo. They don't do that now. I was told that because of my CF I wan't able to attend the two week camp needed by all first year cadets to be able to move up in rank.  I fought to go and I don't regret it for one minute.

I was able to get letters from my platoon leader, my school phys-ed teacher, my doctor and my family friends to show to the higher ups that this illness hasn't stopped me and won't.  I went to that two week camp in ipperwash, and it was the best experience I have ever had.  If I could I would join the army now.  Tried but was rejected because of my health issues.  That was something i couldn't get my high school phys-ed teaher to get me out of.  Oh well.  NO REGRETS!

I think of all the things I have done in my life, Gymnastics, Synchro and Cadets are my top 5.

Did my mother ever hold me back... NEVER!

Parents now need to keep their children with CF as active as possible.  I don't regret anything I have ever done.  I have the mom of all moms.  She never said NO to activities to keep me healthy.  

I get my positive attitude from my mom, my determination from my mom.  when someone says I can't I will prove them wrong and DO!

To my mom, my first best friend, my fashionista, my doctor, my mentor and my inspiration for living life to the fullest.

The best mom in all the world!

Kiss your mom everyday, call her tell her you love her and always remember she's got you in her heart all the time!

Love you Momma!

Ali

So much to say... so little time to say it in...

Well time for some updates...

On December 10th, I had my port removed.  It was a painful process.  It isn't supposed to be, at all... but like always I have to be different.

Because I had Fibrin tissue on the end of my catheter that my port had, it was time to remove it.  none of knew that I also had Scar tissue built up around the catheter.  Yeah tell me about it.  So as the Doctor is having a difficult tie cutting the PORT from my body, due to scar tissue build up in the holes where the suture the port in, had grown all inside.  So as he's snipping away at the scar tissue there, he didn't know that the catheter would prove to be a hassle.

He had cut the tubing from the port to access it better and as he slowly tugged on the line,it wasn't moving.  But it was very painful.  I could feel the pain in my neck, my back and where the scar tissue had built up.  not pleasant. My Dr actually has to give me an IV of relaxants and pain killers to get it out.

One it came out, I had the privilege of seeing exactly what was causing the problem.  That little bastard thought he wasn't going anywhere, he was happy and content in his warm home.  Don't blame him in the least, ha ha.  It was such a rare occurrence that my Dr. Wanted to keep it to study it some more, and find out how it happened. 

He said "I have never seen this before, can I keep it?  I want to do a study on it" 

How can I say no to that.  I will once again be a part of medical science.  WOOHOO

I can still feel the scar tissue where the port had been.  It's so surreal, but it happened.  The just re cut the scar from the when they put it in, and it barely shows.  Kind of like my transplant scar, that hardly shows also.

I know i haven't been very good at updating this blog. BUT this year things will be a little different.

I went last week, the 4th of January, for a follow-up Bronch to see ow the grade 2 rejection is fairing out. I still have not hear anything, it's only been a week.  I am anxious as I would love to know what is going on inside my chest.  I don't feel sick, I don't have anything to worry about.  NO NEWS S GOOD NEWS, unless you are on the waiting list.

Well, that's all I have right now, I'll let you all know when I know about the Bronch results.

Cheers and love
Ali