Wednesday, December 8, 2010

Beautiful Gifts

 I believe that the universe works in mysterious ways. I believe that if you want something bad enough (in some, but not all cases) it will somehow, sometime happen. 
 A couple weeks ago, James received a bit of an odd phone call. It was from a travel agent from the flight centre in downtown Vancouver saying we had an anonymous gift for he and I to fly almost anywhere in the world. The skeptic in me thought there must be a catch because it was too good to be true. A few days later, we went to the flight centre and discovered there actually were no strings attached… no catch… no scam. We were free to travel to wherever our hearts desired! Are you kidding me!? AMAZING! I was literally speechless sitting there in the travel centre with tears in my eyes. This was after a morning filled with the harsh reminders of the downfalls of having CF followed by a good old bathtub meltdown.  Suffice it to say, this surprising and remarkable piece of good news had spectacular timing.

Since then James and I have enjoyed just thinking about the possibilities. I’m still completely blown away by this incredibly generous gift and wanted to share this news to let people know that the pure goodness in the world still exists!

I consider James and I to be incredibly lucky people and I believe certain people have come into our lives for certain reasons. Whether they’ve provided support, taught us what strength means and how to use it, how to be patient, how to appreciate the little joys in life or have provided us with opportunity to travel freely! The words thank you can’t possibly begin to express our gratitude and appreciation towards those people, in particular to that person who gave us this opportunity. But, thank you will just have to do… so to whoever you are, THANK YOU! Thank you Thank you Thank you Thank you!

Saturday, November 27, 2010

Snap, Crackle and Wheeze

The purpose of today’s post is for some muchly needed venting. I am so tired of CF today! The constant cough, uncooperative mucous, having to fight off cold’s and what seems like every other virus’ out there is getting a little frustrating! I did a course of IV antibiotics in October and was feeling great afterwards… Now… not so much.  I believe I got ONE week of good energy, clear and dry cough’s and the overall feeling of wellness. After that, mucous began to build again in my lungs and I just haven’t been able to get it all out. I’m tired of dealing with the harsh cough that makes you turn purple, the overflowing mucous, and the need for hours and hours of rest to try to keep things at bay. It’s just too much sometimes.
Balance. Balance is one of the things that is most important in life to me and right now the CF card is weighing WAY too much on one side.
Last night my ever so lovely lungs allowed me to fall asleep to sounds similar to the ones I would hear when pouring milk over some rice crispies. Snap, crackle and pop (or wheeze in my case). This was after getting home late then having to spend a bloody hour and a half getting my stupid physio, meds, sinus’, and blood sugar dealt with. After a night filled with endless coughs, I woke up feeling a little jaded towards my CF.
But now, as I write whilst shaking away from this vest, inhaling hypertonic saline and hacking up whatever I can… I have to remember the little moments of goodness in life. Whether it’s listening to my husband strum away on my Dad’s old 1973 acoustic guitar, or watching funny dog video’s on Youtube.  Today is a day to remember those little things and to put the snap, crackles and wheezes aside.
There. Venting accomplished! Take that CF.

Thursday, November 18, 2010

It takes one to know one

I find it interesting and slightly humorous that people with CF seem to be able to pick each other out of a crowd (or busy doctors’ offices) based on hearing each other’s coughs.
Today was my ENT day which means driving to St. Pauls Hospital after work, waiting for my ENT doc’s and having my sinus’ rinsed. I don’t mind it that much, it’s more the waiting that can get tedious. During my wait today though, I noticed a young woman with a little girl trying to keep busy until her name was called. I noticed her cough a few times and nudged James (who came to keep me company) and said, “she has CF”. Immediately I started wondering if I knew her or maybe had seen her around St. Pauls. But I just couldn’t place her. Before I knew it she was called in, then I was called in and the rest of our days continued. I guess despite whether we know one another, we’ll always be connected in that funny way… 
On a side note... you know you go to the hospital entirely too often when one of the residents gives you a "fist bump" on your way out, right after exchanging holiday stories. Oh my life in the ENT department... you'd think they'd give me a frequent flyers card.

Wednesday, November 17, 2010

The CF Dictionary

After mentioning a few things in my last post, I realized some people may not understand what I mean when I say "physio" or "PFT's". So, for whoever is going to be reading this, I thought it may be helpful to have a list of acronyms and words that I might be using in the blog entries to come. In no way am I assuming everyone use these, they’re just simply what I use. So, here you go:
Physio: When I say physio I always mean lung physiotherapy which is done twice/day using different techniques to hopefully cough up mucous that sits in my lungs and masters the art of causing major infections. Boo mucous!
PFT’s: Pulmonary Function Test. A breathing test that my Doctors and I use to determine how my lungs are doing. High 90’s is awesome for me… anything below 70 is plain and simply, not good. I won't talk too much about my numbers unless I feel it's needed. For anyone reading this who has CF or is related to someone with CF, I think it's important not to compare one person's PFT numbers with another because we are all very different in our lung function abilities.
Enzymes: Medications that allow me to digest my food.
Tobi: Inhaled antibiotic done every other month which normally takes anywhere between 35 to 45 minutes but with this new Eflow apparatus, it only takes me 4-6 minutes! Hurray! Tobi is also known to my close friends as the drug that always goes in the bar fridge first when traveling.
Pulmozyme: Another inhaled medication
Neb: Stands for Nebule or Nebulizer which is used to deliver my inhaled medications.
Eflow: I use this most amazing new piece of equipment for Tobi which has saved me a total of 1.5 hours/day! Got it from the UK and am LOVING it!
A1C: Average blood sugar over the last 3 months.
BG: Blood Glucose
Thumping: Another way of doing physiotherapy for my lungs. Actual name: Postural Drainage Physiotherapy. My parents used this technique when I was first diagnosed up until I was about 12 or 13. They did thumping anywhere and everywhere including campground picnic tables, ferry terminals, public parks etc. They NEVER skipped a thumping session.
Vibes: Something only my parents and physiotherapists have mastered. Vibes are when you use your hands to put pressure on certain areas of the rib cage while vibrating the hands… this helps loosen up built up mucous. Can’t explain it much better.
PEP: Positive Expiratory Pressure apparatus. My main physio method. Breathing through it allows that pain in the ass mucous to come out instead of staying in my lungs which leads to lung infections.
Shaker Vest: An oscillation vest that I put on that is supposed to shake the mucous out of me. I think it’s worth about $20, 000.00 and currently I’m part of a study to see if the Vest is a better physio method vs the PEP or Postural Drainage or any of the other methods out there. It’s a year long study that I started in January and so far, I don’t think it’s worth it. Although I’ve heard it works great for others.
BW: Blood Work
IV: Intravenous
Tune up: A time when my body needs a little more than extra physio or oral antibiotics. It’s when IV antibiotics are needed to get rid of a building lung infection. It can either be done at home (Home IV) or in the hospital. Not really a fun time.
Exacerbation: When a tune up is needed.
PICC line: Peripherally Inserted Central Catheter. A line that is inserted into one of the big veins in my arm usually just above my elbow and runs up to the top of my heart. It’s used instead of a regular IV (typically inserted in the hand) because the antibiotics used to treat the vicious infections we CF’ers get are like battery acid going into our veins. They’re too harsh for the little veins in our hands. 
Abx: Antibiotics
ENT: Ears Nose and Throat Doctor who I see every week to rinse out my sinuses with a nasty smelling special antibiotic to help prevent infection and polyps from developing.
I think that's it for now although I may add to the list in the future.

That's all for tonight... time for Tobi ;) 

Lengthy Beginnings

After careful consideration and receiving feedback from some very wonderful people in my life, I have chosen to start a blog.
I have been thinking about blogging for some time now and have finally realized that as I get older and as my CF (aka Cystic Fibrosis) gets harder and harder to deal with, a sounding board is needed. I need an outlet, an escape from reality, a place to think and express thoughts that have been floating around in my brain. I am not a great writer and I don’t wish to be compared to any of the incredibly wonderful blogs out there. I simply want a place to divulge.
Most of the readers will know this, but just in case you don’t, I have Cystic Fibrosis. Perhaps I should put out a small reader discretion as I feel that in order to express my true self, I need to feel free to do so in whatever form may come out. I hope to not offend anyone and I hope to not be judged in whatever content I produce. The blog may include swear words, sentences that may not make sense and the explicit realities of CF and how they make me feel. CF has disgusting moments and I don’t plan on sugar-coating my words but know that it’s my reality… along with many others who have CF.  Although this blog may have brutal moments, I do hope it will provide what I’ve gotten from some of the most amazing CF blogs out there… reassurance, laughter, support, encouragement, information and hope (I hope).

 So, without further ado, here’s a little something to start off with.
Cystic Fibrosis has been “annoying” my body since birth, but we found out about it when I was 16 months. Since then, my days have been filled with physiotherapy, pills, coughing, mucous, stomachaches, hospital visits (and stays), and so on.  I won’t be explaining exactly what CF is so if you’d like more info on CF… please see:
I’ve always pushed myself to achieve my goals and so far, I’ve reached most of them. Being familiar with the medical profession since a young age, I was drawn to nursing at age 11 when I was admitted to hospital for the first time. Overall I was a very healthy kid and this hospital stay was not due to a CF exacerbation.  It was because I had to get sinus polyps removed (another common CF complication). So after I had this not so wonderful hospital experience, I was drawn to what made it tolerable… the nurses! After graduating from high school I went on to get my nursing degree and have since specialized in pediatrics (my favourite). Hospital work didn’t exactly agree with my body so currently I work as a community health nurse specifically with kids with chronic health conditions and special needs, in their home and at school.
I work with some incredible families and amazing people and I’m grateful for the perspective they give me on a daily basis.
Since birth, amazingly supportive people who have taught me how to be strong have surrounded me. When going through hard times, I’ve often said “ it could always be worse” and in most cases, it can. But there are people I’ve met, friends I’m close to and, families I work with that couldn’t have it much worse. So, on my worst CF day when my lungs are just not cooperating, when it’s hard to breath, when I’ve gotten some bad test results or when I’m questioning my future, I look to those people, take a deep breath (when possible) and look at the big picture… perspective… and try to tell myself that… it could always be worse.
Another goal I achieved was finding my love. I got married in the summer of 2008 on a beautiful beach filled with all of my favourite people in the whole wide world (minus a few who couldn’t make it). For me, that day was filled with happiness, laughter, tears, beauty, and love. Love, love, love. The love that I shared  that day not only with my new husband but with my family and friends is what I wanted most out of that day.
My husband is amazing for putting up with all the CF crap that needs putting up with. He puts my health first (although sometimes it may be after some gentle reminding J). He understands what is important like making sure I have tissues available when I’m doing physio, or knowing that PFT test’s under 90 is not great, under 80 is really not great and under 70 is definitely not good for me. He also understands when I need his support whether it’s a hug, encouragement or a running partner. I’m thankful to have him with me after the heart-wrenching first couple of years of our marriage after he was in a car accident leaving him with pretty major injuries. He lost one of his best friends that day and we miss him everyday. But I’ll leave that for another day and another blog.
I am so grateful to have such amazing people in my life. My parents taught me to be positive, to never skip a physio session, to remember the important things in life and to try and not stress over the small things that sometimes make life difficult. They have provided unconditional support and encouragement and will drop anything if I need them. My sisters are the exact same. I have two older sisters and I truly don’t think I would be anywhere near where I am today if I didn’t have them by my side. They have (along with my parents) supported me through endless medical procedures and hospital stays. They’ve cooked for me, cleaned for me, washed me, and taken care of me. Unconditionally. They put their own needs aside when I need help. And I am incredibly grateful.
Not only do I have an amazing immediate family, my extended family is incredibly wonderful as well. We’re the type of family that comes together for good times and bad times. For support, advice, laughter, memories and so much more. This family was based on two people that seemed to have started it all:
Grandpa Bert and Grandma Win. They are my Mom’s parents and they have embedded such amazing qualities in us and to me, they represent the strength, love and kindness that has brought me to where I am today.
I have incredible memories of my Dad’s parents as well (Pampa Black and Grandma Dorothy). They filled my childhood with laughter, excitement and  gentle love that I will never forget.
My life is what it is and I am who I am. I’m able to get through those difficult moments in life because of the support I get through my family and friends. I hope this blog will reflect my journey through life filled with ups and downs… and hopefully it will be somewhat interesting to read… but I guess we’ll just have to see…
I’ll leave today’s introductory post with a quote that I’m trying to live by… hope you like it.

"A lifetime is not what is between
the moments of birth and death.

A lifetime is one moment
Between my two little breaths.
The present, the here, the now,
That's all the life I get.
I live each moment in full,
In kindness, in peace, without regret."

Chade Meng, Taoist poet