My Momma

This blog is for my Momma.

She is a woman like no other and has more energy then anyone I know. She has been the President of the Campbell River Cystic Fibrosis Chapter, the President of Cystic Fibrosis Canada, she’s travelled the world to different CF conferences. She, with the help of her husband and a few incredible friends, founded the Campbell River CF Chapter from the ground up. This chapter is in the top 10 in Canada for fundraising per capita and is now one of THE most successful chapters. Not only has she contributed to a CF Chapter that has raised millions of dollars over the past 27 years, she has also been an advocate for children and adults with CF in so many ways.  A few years ago, she was involved with lobbying politicians to implement newborn screening for CF – and now every baby born in BC is screened for CF at birth. This woman has done and continues to do more for CF than I could ever imagine. She was even the one who pushed our family doctor to have me tested for CF when I was only 16 months old. 

She and my Dad did my physiotherapy every single day, twice a day. NO skipping. It didn’t matter if we were in the middle of a ferry line up, camping in the woods, or if I was in the middle of some serious play time with friends. They always put my health above their needs while making sure my two older sisters got much needed attention and kept them involved and included in my health. I always say I wouldn’t be anywhere near where I am today without my family, and every time, I truly mean it. It’s because of the strong foundation that my parents instilled in me that I have the strength to face CF every single day.

When I’m sick and on IV antibiotics, she helps me in any way she can from cleaning, laundry and cooking, to just spending time with me to keep my spirits up.  She encourages me when I need it most, she calms my nerves, listens to my worries, venting and complaining (most recently this morning when trying to get things organized to get yet another PICC line inserted in order to start more IV antibiotics), all while keeping up with her work in the CF Foundation. She is the person I look up to and turn to when I struggle. She inspires me and I am so incredibly grateful that she is MY MOMMA.

Recently, she received the Queens Diamond Jubilee Medal. This medal honours significant contributions and achievements by Canadians to their fellow countrymen, their community or to Canada. I mean, this is a BIG deal. Are you kidding me!? I’m proud of myself for making it out of bed, doing my physio, getting some exercise and getting dinner on the table! This woman amazes me every single day and I am so very proud of her. With a mother like this, how can a cure for CF not be found!

I can’t leave this blog post without saying something about my amazing Dad. After all, at every step, he has been beside my Mom, and has contributed to the CF cause immensely in his own right. He’s truly the best Dad anyone could ask for!  I am so very lucky to have these two amazing people called  “The Black’s,” as my parents.  Some may even say I hit the jackpot. 

Congratulations Momma. I’m so very proud of you!

Stuff I'd like people to know:

It’s been over a year that I’ve been off work because of my declining health and quite frankly I often get a little tired of people asking me if I get bored during the day or if I struggle to find things to do throughout the day. Then I thought, some people just don’t know much about my CF or about my daily routines or about the fact that going back to work is not a choice that I have the privilege of making… my health has made that choice for me (as much as I’d like to believe that I actually made this choice). So, I’ve decided to put together a list of things I’d like people to know. Things I feel strongly about and other things that are just, well - me.  I understand that whether people read this or not, is out of my hands. I haven’t blogged in a long time and may have lost the interest of some readers. Nonetheless, I’d like to put these thoughts out there.

·      Mornings are the hardest for me. I’m out of breath, I spend 2 hours on inhaled medications, physiotherapy and breathing exercises and I’m usually coughing up so much mucous it makes talking difficult. So… if you want to actually talk to me, call in the afternoon or evening.

·      It amazes me how much sleep and rest my body needs. In a good week I can get up around 9am and finish my meds by 11am, attend my medical appointments, get errands done, get dinner ready and maybe even have a visit with my sisters, niece and nephew or go for a coffee with friends. In a bad week I need to sleep until 10 or 11am. I don’t finish my morning meds until about 1pm and I get exhausted after only getting one thing done a day (e.g medical appointments, grocery shopping, taking Bettie our for a walk or cooking dinner). This is a BIG change from when I was working. I’m still getting used to the fact that my body works everyday to fight whatever infection I have and it’s taken a long time for me to realize how important rest is.

·      Although everyone loves to hear that they look great, I actually get tired of hearing this. Please don’t think I’m being conceited but CF is such an inside disease. Although I may have done myself up with makeup, I often feel like crap on the inside so hearing I look great is not necessarily what I like to hear because it’s not a reflection of how I feel. What I DO appreciate is being asked how I’m doing and having the freedom of giving an honest answer. Having people just listen and show they care can be incredibly supportive and helpful.

·      There are days when I really struggle to stay positive. I’m in new territory with my health and I’m learning how to look on the positive side like I always have. I’m learning that support is something that helps tremendously. Support and love from family and friends has never been more important. I hope people remember this.

·      Animals are amazing creatures to me and they are often where I get my positivity. My life list includes a lot of experiences with animals including one I got to do a couple weeks ago with a friend. It was INCREDIBLE! I would highly recommend the dolphin encounter at the Vancouver Aquarium. I was so impressed and amazed!

·      There are times when I love to lose myself in a great book, a fantastic movie or a hilarious TV show in order to forget about my disease.

·      Almost everyday I think about our (James and I) desire to have kids and I wonder if this will actually ever happen. I want to believe it will, but my decline in health puts a HUGE barrier in front of this dream.

·      I never want to be the kind of person who is defined by their struggles. But at the same time, for some reason I want people to understand how tough living with CF can sometimes be. I think it’s because I just don’t look sick, so people automatically assume I’m a regular person who’s just taking a bit of time off work and who just happens to cough a lot. Not that I’m not a regular person… you get what I mean.

·      I have the most wonderful family, quite possibly in the whole wide world.

·       I ’d love to meet Ellen DeGeneres one day and tell her how much I love her show and how it’s always been such a great distraction for me. From the many times I’ve been sick at home on IV or in hospital, the times I was waiting for James to wake up in ICU after his accident, to the times I simply needed a laugh.

·       There are many places I’d love to visit such as; England, Scotland, Spain, France, New Zealand, Africa and also do a road trip through the States and back across Canada. I’d also like to do these trips free of CF-health worries!

·       I’d love to go to a live taping of Late Night with Jimmy Fallon. I have a major crush on him and I absolutely love his humour and his ability to be genuine with his guests.

·       I loathe cigarette smoke. It killed my mother-in-law and it was a huge reason why my loving grandmother developed lung cancer even though she had quit smoking for nearly 35 years. I don’t understand how people choose to worsen their bodies just for the feeling they get from smoking a cigarette. If that’s not an addiction, I don’t know what is.  I just hate watching people throw their lungs away while I do everything I possibly can to prevent my lungs from getting worse. What a privilege it is to choose the fate of your lungs versus having that fate decided for you.

·       Having said that, I am so very very VERY proud of people who have QUIT smoking! I don’t know what it’s like to be addicted to nicotine, but I can appreciate how difficult it is to kick the habit and that’s why I am so very proud of those who have quite. Tara Wood you are awesome!!!

·       I find it funny and irritating when people ask how I’m doing and I respond with an honest answer such as, “Well, I’ve been needing a lot of sleep lately, my breathing isn’t great and I’m coughing a lot more”. And they respond with “Ya I’ve been feeling under the weather too lately. I think there’s something going around”. This isn’t feeling under the weather. This is CF, which you don’t have. So please don’t compare yourself with me. But thanks for asking how I’m doing instead of saying “Well you look good anyway”.

·       Sometimes I wonder how certain doctors or nurses passed their exams and got into the health care field.

·       I’m so thankful the doctors, nurses, physiotherapist, dietician, pharmacist and social worker at the CF Clinic are GREAT at what they do!

·       I strive to be grateful for everything in my life on a very regular basis. I really do have so much to be thankful for. But I must admit this is sometimes a struggle as I get older and don’t have the things I’d like in my life, like children. It’s something that challenges me and something I think I’ll always need to work on.

·       I hope I never become a person that complains about the most mundane things on Facebook. I’m all about venting, but before you post whatever your complaint is publically…. Think about who might read whatever you’re posting and think about how good you actually have it. I include myself in this.

·       I think I’d like to write a book one day.

·       I have a serious crush on Channing Tatum… please don’t make fun of me like my husband does!

·       Nausea and being out of breath are the two things I hate most in this world.

·       I admire people who are able to put their worries aside and focus on something positive.

·       Schmitt from New Girl is quite possibly my favourite TV character ever… and Phil from Modern Family… and Cam.

·       In no way do I think my life is really hard. I mean, I have a great place to live, I have an amazingly loving husband who I almost lost 4 years ago but didn’t. I have the most supportive family anyone could ask for. My dog is hilarious and I love her so much.  And I have the privilege of knowing some of the greatest people in the world (to me). But part of me feels it’s just not enough. I want more out of life. I want to be able to travel when I want and not have it depend on my health. I want to have a family of my own. I want to go back to work. I want to spend the hours I currently spend on my health each day doing something fun. I want to make a difference in this world. And most of all, I want my life to move forward instead of standing still.

Thank you all for reading and for your support. It means the world to me.

Being Grateful

Appreciation is something that is sometimes overlooked in life when talking about happiness. But to me, it’s incredibly important. It requires time, reflection, and stopping yourself at any given moment to take a breath and… be grateful for what you have.

These past several months have certainly not been easy, but then again, they could have been a lot worse.  It took some time, a little shaking up, and some re-evaluating but gratitude showed up in a huge way one day and taught me how important it is.

Experiencing 3 serious lung infections treated by IV antibiotics paired with two hospitalizations, a disconcerting CT scan of my lungs all within 5 months then having to move out of my home and back in with my parents because of someone else’s cigarette habit, added with not being able to return to work was causing a build up of negative stress.

It took a while, but I started to realize that I had a choice. I could choose to view this as - life as I knew it was being controlled by things other than my own choices, or I could see this as an opportunity. An opportunity to focus all of my energy on my health in hopes of turning that horrible looking CT scan of my lungs into clear, infection-free, easy breathing freedom.

Living with my parents for the past 3 months (and couch surfing from my wonderfully giving sister Rachel’s place to my thoughtful caring Grandfather’s place for 2 months prior to that) has allowed me to take a break from cooking, cleaning and all the other daily adult responsibilities. It’s also allowed me to just be with my parents. To some, it may sound lame, boring or regressive, but to me, it’s been really amazing. There’s nothing like the loving care you get from your parents and I’m so grateful for the time I’ve been given to spend with them.

I’ve also been given the opportunity to not have to deal with the stress of work. Yes of course, I absolutely miss my job. Caring for those sometimes incredibly vulnerable families and kids is amazingly rewarding and provides me with a feeling of purpose. However, having the time to focus solely on my daily physiotherapy sessions, medications, rest, exercise, eating well and de-stressing has been a true blessing. I’ve never had this opportunity and it seems it's come at the perfect time.

Moving back to the island has of course put a bit of a kink into my weekly trips to my lovely ENT doctor to have my sinus’ flushed out. Over Christmas I asked him if I could skip the weekly visits and come after two weeks to see how my sinus’ handled the missed flushes.  We spent Christmas in Tofino this year with James’ mother, his sister and her family. My brother-in-law grew up in Tofino and is (of course) an avid surfer. Every time we visit our family in Tofino I insist on getting in the water to surf (well, at least try to surf) with him. This time the purpose of getting in the water was a bit different though.

A few years ago I started a new inhaled therapy called hypertonic saline that was developed based on the improved lung functions and sinus health of surfers with CF in Australia. Of course I do the “medical version” of this treatment every single day but I thought getting in the water for a dose of the real thing was worth a try. Sure enough, after two weeks without my regular ENT visits, my sinus’ actually looked great! It was then that I made a deal with my sinus doctor. I would get in the water regularly if I could skip the weekly visits. Given the state of my healthy, pink and wide-open sinus’, he agreed to see me every two to four weeks depending on the status of my sinus’.

After my other kind and thoughtful avid surfer brother-in-law loaned me his old wetsuit, I was in the ocean every other day with my dear (and maybe a bit crazy) friends Krista and her husband Daryl who encouraged me to get in the water from day one. Talk about supportive friends. Who in their right mind would get in 3 degree ocean water just to support their friend with CF!? You can see why my appreciation was right there in front of me. I even got a swim lesson in the beautiful sea off Quadra Island from Barry Davies who is a competitive Masters swimmer! 

It’s been three months now and other than one minor set back caused by a cold virus, my sinus’ haven’t looked this great in years! With these results I wanted to incorporate my ocean adventures into my regular therapy routine and thought I’d better get a wetsuit of my own.  After doing a bit of research and shopping around, I soon discovered it might be a bit out of my price range since I haven’t been working. After about 3 or 4 weeks of trying different suits on, getting advice from my brother-in-law and trying to figure out how I could swing this financially, Daryl introduced me to the Patagonia company. After watching a clip on their website and exploring their company a bit, I was hooked! I decided to write to the HtO surf shop in Victoria who carries Patagonia wetsuits to ask if they could pass my story onto their Patagonia sales rep to see if I could get a wetsuit at a discounted rate. Nicole, the HtO manager was incredibly kind and agreed to pass my story on. Thank you Nicole! Within the same week I heard the most wonderful news I’d heard since hearing my sister Tara was pregnant with her second! I was ecstatic to read that Ross Mailloux , the BC Patagonia rep, had not only read my story but told me their company would like to give me a wetsuit... free of charge!

WHAT!!!? Ecstatic didn’t even skim the surface of the excitement that was pumping through me! I called Krista and Daryl and my parents right away and told them about Patagonia’s generosity and within a few weeks, I was basking in the ocean in a brand new Patagonia wetsuit!  With this new wetsuit I’ve been able to stay in the water much longer without getting the slightest bit cold. I admire Patagonia as a company because they incorporate environmental issues into their business and have decreased their carbon footprint (something that is incredibly important to me), and they have gone out of their way to help me out.  


I understand companies are called upon by hundreds of different charities throughout the year and are often not able to help. It was Ross’ choice to take the time to read my story, go beyond my request of getting a discount and provide me with a wetsuit for free.  He could have put my email aside and forgotten about it but he didn’t. He chose to go out of his way to support me just as so many other business' have supported the CF cause. Neil Cameron, Editor of the Courier Islander Newspaper even took an interest to what I was doing and came out on one of the windiest days in Campbell River just to write a story and take some pictures of me swimming which will be in the paper on Wednesday April 11th! Thanks Neil! I am truly grateful for everyone's support. 

I believe circumstances present opportunities and it’s up to us to decide whether it will carry us forward or pull us back. If appreciation is not recognized within those opportunities, I believe life can pass you by in the blink of an eye without ever experiencing true happiness. I hope every relative, friend, family-friend, supporter, volunteer, donor and anyone who I might be missing knows how grateful I am for absolutely everything you’ve done for me, my family and the CF community. 

It can be truly amazing what life throws you. So remember to stop and choose how you think about what you've been thrown.

"The single greatest thing you can do to change your life today would be to start being grateful for what you have right now. And the more grateful you are, the more you get." - Oprah

Cloudy with a chance of sunshine

Well… here I am. Blogging again. It’s been, well, a long time. But things have been tough and I promised myself that I wouldn’t push myself to blog unless I had the time, energy and most of all something to say. Before I go on I have to remind whoever is reading that this blog is about honesty. It’s just about how I feel today, right now.

I turned 30 a few weeks ago and I spent the two weeks prior to this somewhat momentous birthday either in hospital or on home IV antibiotics… again. Today, yet again, my breathing is strenuous and my lungs are overflowing with that disgusting, exasperating, aggravating and frustrating sticky CF mucous that seems to make my life a living hell.  Today at clinic, I discovered that my PFT’s are as low as they’ve ever been and that I need to go back into hospital for treatment.

During times like this, it’s hard not to think about the inevitability of CF and whether or not that’s getting just a little bit closer for me. The median age of survival for people with CF was 37 and within the last couple years or so it has increased to about 47. Part of me is thankful that more and more adults with CF are reaching middle-age and beyond but the other part of me can’t help but think that if it’s this hard now, what is it going to be like as I age? These thoughts have been clouding my true beliefs about life for a long time and I can’t seem to find any clarity or sunshine. Peace, enjoyment, and pure happiness are things I’ve been seeking. I’ve had moments of these but after hearing that my lungs are yet again full of infection, it’s not easy maintaining those moments of peace, enjoyment and pure happiness. It’s difficult when nobody really understands. I mean, even others with CF… we’re all so different. It’s hard not to get terrified of what CF will feel like in 5 or 10 or 20 years. I’m not sure why things are different now. Why I feel the need to prepare myself for what it’s going to be like.  All I know is a cure would sure be nice right about now. I think the truth is that as a kid, I never thought about the inevitability of CF because I actually believed a cure would have been found by now. I don’t want to have to go through a lung transplant and I’m getting so freakin’ tired of the hours spent trying to prevent lung infections and then despite my best efforts, getting lung infections ANYWAY!  I mean come on! Some of my health care professionals have told me that for reasons they don’t yet know, woman with CF and CF-related diabetes have a higher mortality rate. I said to them, “well what the fuck!” Sometimes it’s just so discouraging. I just really hate it right now. My last hospitalization was so awful and I’m SO not looking forward my next hospitalization. You should have seen the text I sent my sisters today after hearing the news. Let’s just say I don’t think I’ve ever added such colourful words to a text before.

I think what bothers me the most about being in the hospital is the lack of respect you often get and the inexperienced health care workers who practically insist on driving me crazy. I know you need to build experience somewhere but sometimes I just can’t answer anymore of their stupid questions. When I get admitted back to hospital, do you suppose it would be appropriate to put several signs on my hospital room door directed to ALL hospital personnel? The first one would say something to the effect of…

To all Lab Tech’s, please read. If you must draw pre antibiotic blood levels or any other morning blood work, I would advice you to gently warn me to cover my eyes before you flick on the lights and draw my blood. After having a shitty nights sleep, my mood in the mornings are a bit dicey. By simply allowing me time to cover my eyes will save you from an unpleasant patient experience.  

Next…

To ALL 10 thousand of you residents trying to get into my room for an assessment every single morning: First and for most, you don’t know me. Do me a favor and ask me a question about how I’M doing. Not my lungs, not my sugars, not my fever or cough or sputum or anything else. Ask me, how I am. Just that one question that would take no longer than 2 minutes would allow you to put those “caring” and “empathy” words into action which they may have brushed over in med school.  I’d also appreciate it if you’d talk to me like a person and not a patient. Even the simple task of sitting down and talking to me at eye level changes the whole patient-doctor dynamic. I guarantee you will get a better response from me, you’ll get honest and accurate answers from me and I will ALLOW you to do a proper assessment… with less attitude on my part. But please, to avoid me from going absolutely crazy, document our conversation, your assessment and your recommendations so I don’t have to repeat myself to all of the other thousands of residents that come prancing in my room, eager and ready to learn how to be a good doctor. This will stop me from saying smart-ass comments that will likely make YOU feel like an asshole.

And finally to my lovely nurses: Some of you are great and some of you need some guidance. Please recognize that I’ve done this my whole life and I don’t need you to tell me when and how to do things. Ask me questions. Joke around with me. Brighten my day with a funny story about some crazy code white patient while you’re taking my vitals. And never, EVER tell me what I “should” be doing. Believe it our not, I actually know more about CF than you.

To any other hospital personnel, don’t bug me early in the morning. And don’t ask me stupid questions. I know you’re all very busy and important people, just remember, the patient actually has all the answers to your questions and if you treat us with respect, we’ll treat you with respect and we’ll give you the answers you’re looking for.

Thank you kindly

You know I’m usually quite patient in the hospital and willing to put up with all the things you need to put up with. But at the end of the day, my patience only goes so far. Ugghhh!

After all this cloudiness and dread, I (luckily) have had moments of clarity and sunshine thanks to some inspiring people in my life. It’s clear to me that support is needed in a way that goes beyond the definition of support. For me, my strength comes from the support I get from so many of you out there and it’s become obvious to me that when my tank of courage, strength and will gets low, a quick (or long) stop at one of my many support stations is needed.

Like Shannan Brown, my coach. She’s quite simply amazing to me and so unbelievably helpful. I had the opportunity this summer to attend a “Shift-It” retreat that she put on and I would HIGHLY recommend it to anyone who feels “stuck” in his or her life and needs a change. She had the small intimate group of us do exercises that fed and created ahha (if I may borrow Oprah’s famous saying) moments, moments of clarity, and moments that made you go “Ohhhhhh ok”. It was such a great weekend. I left Shannan’s feeling re-energized, inspired, hopeful and understood and I will always be incredibly grateful for her. My upcoming and muchly needed stop to fill up my tank I think will require a good old smash‘n’swear inspired by Shannan. They’re such a great release!  

Erin Wallis you are another way for me to fill up my tank which I recently did after reading one of your many inspiring blog posts. Without even knowing it, you remind me to appreciate what I have, stop and enjoy the small yet amazing things in life and through your generous support to Cystic Fibrosis Canada, you make me feel loved and cared for. You really are one of a kind.

Laughter is one of my other ways to fill up my tank. Whether it’s going out with my girly friends, watching video’s of my nieces and nephew, watching a funny movie or having almost an hour’s texting conversation with one of my dearest friends who makes me giggle when she makes comments like “ya that did suck a big dirty goat ass”! You know who you are and I love you!

Like Shannan taught me, life is about balance. I know I’ll get back to my regular sunshine self that is courageous enough to say “bring it on” to CF’s sometimes brutal shit. It’s just been cloudy for a while now. I know what I need to do to get my sunshine back, I know where to get help along the way and most of all, I know how lucky I truly am. Sometimes a little perspective is all you need. So... here I go. 

Breathe

Sometimes it’s easier said than done you know… breathing that is. For the last several weeks I’ve felt rather out of sorts which has all lead up to last week’s start of a really bad lung infection. It started with me not being able to make it up the stairs at work two weeks ago… which lead to a phone call to the CF clinic by that Friday… which lead to oral antibiotics and some time off work… which lead to a clinic visit the following Wednesday… which lead to me realizing that my PFT’s were really shitty (see my “CF Dictionary” post if you don’t know what PFT’s are) and a bad chest x-ray … which lead to a PICC line insertion and IV antibiotics the very next day. It’s been just 3 days now since I’ve started the IV antibiotics and I’m still feeling shitty. Still having trouble making it up the stairs, still feeling sick all over, still feeling nauseous and tired all the time and still dealing with the realization that being on IV just once a year may be turning into twice a year which in my head may be that slippery slope. But hey, twice a year is better than 6 months out of the year right?  

So many things affect breathing. Or maybe it’s the other things that affect breathing so much. Either way, walking, cooking, taking the dog out, eating, talking, sleeping and even thinking are exhausting right now. Focusing on breathing is something that is actually not easy… despite what some of you yoga go’ers may say. As I try to keep calm, take as big a breath as I possibly can, I keep thinking about how much worse things are going to get. About how hard it’s going to be if we have a child if that’s actually ever going to happen. About how I may actually have to one day get used to being short of breath. Then of course this leads to tears and that just makes the breathing even more difficult to control. It’s constant sucking air in and forcing air out with coughs between every few breaths then choking on the over-flowing mucous that needs to come out then feeling like you’re going to throw up. Lovely I know. Actually it’s fucking disgusting is what it is. And strenuous and exhausting and fucking terrifying. Breathing is so complicated. So when they say, just breathe, why can’t it be that simple. Just breathe Kim... Just... breathe. Luckily I’ve had the support of my loving family to lean on. They’ve provided unconditional love through cooking, grocery shopping, cleaning, renting movies, bringing my niece over to brighten my spirits, taking my dog out for walks, getting me puke buckets, giving me pills and taking trips to the pharmacy for me. All while James and his family were on the island raising money for Cystic Fibrosis Canada by putting on the Green Mountain Music Festival which I wasn't able to attend this year because, you guessed it, I'm too sick.  So when’s this damn cure gonna be discovered anyway? I mean COME ON ALREADY!  I know things have come an unbelievably long way since I was diagnosed 28 years ago but it's just not come quite far enough. At moments like this you need to dig threw all the everyday shit and find that inner strength that hasn’t been needed in a while and tell it what’s been going on and that you could really use a boost of that inner strength because if it doesn’t pull through for you now, you just don’t know how you’ll get through another breath. At moments like this I need to go back to the day James and I first saw the great barrier reef and felt our first kangaroo and watched our first sunset on a sailboat in the Whitsunday Islands and saw our first rainbow on top of the Sydney Harbour Bridge and remember those great moments in life that make it all worth while. I realize I never finished writing about our Australia & Fiji trip. Maybe I will. But right now and for the past several weeks, I’ve just been too tired.