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.

Australia & Fiji, 2011 Part 1: Travel is a wondrous thing that purifies the soul.

Well it’s been a whole month now since James and I arrived home safe and sound from our trip. Our trip was full of experience, adventure, learning, pure amazement, excitement, and connection. It’s hard to believe that our trip of a lifetime has come and gone and we’re now back to the reality of daily life. I wanted to share a few moments from the trip before we get too caught up in the daily lives of “ The Wood’s”. I wrote about our journeys everyday in my journal… usually while waiting for my physio to finish up. So here are some tidbits of the Kim and James travel experience.

Our journey began filled with emotions. Here’s a little piece of my journal, which I wrote on “departure day”.

“We’re on the flight to LA and as I look out the window at the blue sky filled with billowy clouds, I just can’t believe that I have the love of my life next to me and that we’re on our way to Australia. There is no way I thought this was in our future when I look back two and a half years ago. I keep thinking of Eva and how excited she would be right now if she were on her way to Australia. I’m definitely bringing a piece of her along for this ride. This is a pretty incredible feeling. So don’t ever forget it.” Written Apr. 2^nd, 2011.

After 30 hours of travel, a few hours of sleep here and there, a half-ass physio session in the “Air Pacific” office in LAX, and with our bellies full of crappy airplane food… we arrived in Sydney Australia!

After getting our bearings, sorting out my bag of medications (appropriately named “the med bag”) and putting the essentials in our tiny fridge (insulin, pulmozyme and beer), we went for a wander to see the great sights Sydney had to offer. Our time in Sydney was short but jam-packed full of sightseeing and exploring. One of my favourite moments in Sydney would have to be feeling James’ arm wrapped tightly around me while we both gazed at the incredible city landscape while standing at the very top of the harbour bridge. We were then surprised when a small rainbow decided to make an appearance amongst the overcast gray sky. At that moment, I said hello to my Grandma Win and smiled. “ It was the kind of moment where your heart skips a beat and you breathe a breath of contentment and you experience that rare feeling of – life is beautiful.” Written Apr. 6^th, 2011.

Another favourite moment was definitely seeing my very first kangaroo and koala bear. Being able to hand feed a kangaroo and pet a koala was absolutely amazing for me. I learned that kangaroo’s are one of Australia’s symbols because they can’t walk backwards thus always striving to move forward… something I admire very much.

Walking along the coast walk from Bondi beach to Tamarama and seeing the Opera House for the very first time were also things I’ll never forget.

Meeting up with my long lost friend from high school, Carrie King, was another favourite moment in Sydney. It had been 9 or 10 years since we had seen each other but we were able to pick up pretty much exactly where we left off. Only true friends are able to do that.

After 4 days in Sydney we flew to Brisbane to start our road trip…, which was the start of a whole new adventure! After several “oh shit” moments due to getting ourselves lost a few times and not finding the Wicked Van rental place until late, then having to drive to a campsite which we hadn’t even booked yet, while learning to drive on the other side of the road in the dark and trying to find a gas station because we were left with an empty tank and having ZERO camping supplies… AHHHHHHHHHHHH… STRESSFUL! Finally we found the gas station after several wrong turns, loaded up the tank and we were on our way to find Kangaroo Pt, AKA, a place to park all night where you won’t get towed, with public toilets and a sink to wash up and where clueless travelers spend the night when they haven’t booked a campsite in advance… lesson learned.

What a night! Our checklist the following day included buying groceries and camping supplies! Because sleeping in our clothes with our travel towels as blankets after eating our gas station groceries was surprisingly not as glamorous as expected.

 After a bit of a rocky night, stocking up on groceries and supplies, we were FINALLY on the road in our Wicked Camper van… heading north.

Our first stop was at a little town called Landsborough which was close to Beerwah which is where the Australia Zoo is located which was AWESOME!

Our second night camping was much better than the first… although I did have some nightmares about deadly spiders crawling in the van… yikes!

The next day we spent at the Australia Zoo. I was in total heaven. Normally I’m not big on Zoo’s. Keeping animals from their own natural environment for our pleasure and entertainment is just something I’m not into. But, this zoo was different. I was pleasantly surprised at how much education they provide around conservation, animal endangerment, why these things are important and what we can do about it.  Watching a guy feed an enormous crocodile, being able to hand feed an elephant, watching a tiger play in the water with a gigantic cat toy and holding Tasmanian devils named Rex and Franklin… well it was DEFINITELY a highlight of the trip for me. What an amazing place. I was like a kid in a candy store… or better yet, a kid in a ZOO! I’m so thankful to be able to cross off these things on my life list. This day was AMAZING!!!

After a whole day with the animals, we sadly said goodbye to the Australia Zoo and continued our journey north towards Noosa.

Noosa was so beautiful. “I really loved Noosa and I could definitely move here. I figure my weekly sinus appointments could be done right at the beach. A good swim in the ocean is as good as the flushes I get at the ENT office right? This beach is a much nicer office to wait in anyway.” Written Apr, 11^th, 2011.

After booking a tour on Fraser Island at the visitors centre, we headed up to Hervey bay where our tour would start the following day. 

Time for a break… coming up, Australia & Fiji Part 2: Our Wicked Roadtrip continues…

Dear Eva

You’ve been gone for a year now but to me, you’re still around. I think about you every time I go for a run. I imagine you pushing me from behind whenever I get too short of breath saying “Keep going! Keep going!”  You’re life was taken from you far too early and it kills me to think about what you would have done with your life if you had the chance.  It kills me to think about your family not having you around. I didn’t even know you very well and this is the impact you had on me. I think you were an amazing young woman and I’m so thankful for so many things you’ve done. By publicizing your feelings, you gave me permission to have the same ones. You made it ok for me to have those feelings and you gave me the courage to publicize mine now. You showed us not only how inspirational you are but what I loved most was that you weren’t afraid to let us know that you were frustrated and angry on the bad days. Thank you for that. I think it’s so important to stay positive but you taught me that it’s ok to have bad days too. You taught me to be thankful of what I have and to not take things for granted. I’ve learnt to take advantage of the life that I have to live. So today I make a promise to you. For whatever it’s worth. From me to you. I promise to live and love every day. I promise to fight harder than I’ve ever fought before. I promise to carry on your legacy. I promise to stay as healthy as I possibly can so I can live to see the moment when CF stands for Cure Found. And I promise to bring on along for the ride. You were a remarkable and inspiring woman Eva and I’m so grateful for everything you gave this world.

Generosity and Beyond

There are few words that can truly express how I feel about a group of people that live in a small town on Vancouver Island called Campbell River.  My eyes fill with tears as I think of the generosity that comes from this group of people. It started with 8 individuals, 28 years ago that shared a common goal that came from somewhere deep in their hearts that few people in the world have. On May 16^th, 1983, one month after I was diagnosed with CF, these individuals came together for their very first meeting. I recently read the minutes that were typed up on an old typewriter from that meeting and based on the last paragraph, you can tell that their goal was clear right from the start.

It reads: " The Black family would like to thank everyone for their terrific support in forming this branch.  We feel any contribution towards the foundation (CCFF) means more research and increase the chances of finding a cure for Kimmy's disease.  It is our most sincere and deepest hope that a cure will soon be found so she can live as full a life as the rest of us".

The quote refers to the Black family and Kimmy (yes they used to call me Kimmy) but the words and thoughts represent all families that have had CF enter their lives.  

A couple weekend ago we celebrated that group of people along with people that joined that group throughout the years that would soon become the Campbell River CF Chapter, which has raised almost two and a half million dollars over the past 25 years. It was an exciting night filled with great speeches that provided information, gratitude and hope. My sister gave one of those speeches and I must say she did an amazing job. My Dad emceed the event and I also must say that he too did an amazing job. I love you both.

Dr. Chilvers who is one of the CF Doctors at BC Children’s Hospital also gave a speech about CF care and research. I learned some pretty exciting things about new treatments and medications that I hope to take advantage of in the next couple years. Hearing about these exciting new therapies made me realize how much the Campbell River CF Chapter has done for me. Without the funds that they’ve raised over the years, I’m sure I wouldn’t be taking certain medications today or doing certain therapies that were discovered because they had the funds available. And that is why my eyes fill with tears when I think about this group of people and what they have done for me personally. Not only do they continue to raise money for CF, they are there to support me whenever I need it. When I was stuck in the hospital a couple years ago, there wasn’t a room filled with more flowers than mine. All from that group of people that I love and adore.  I’ve always considered myself a lucky girl but it’s the support I get from this group of people in Campbell River that makes me feel like the luckiest girl in the whole world.  They have allowed me to achieve the goals that I’ve set for myself. They’ve allowed me to experience the world. They’ve allowed me to breathe.

I like to call this group of people, my angels. Not many people can say they have a group of angels behind them, but lucky for me, I can. Thanks for the last 28 years everyone. And here’s to the next 28.

A reassessment of sorts

Until now I’ve used this blog as an outlet. The purpose has really just been to get out those thoughts that have been wandering around aimlessly in my brain. After reading some VERY exciting news about CF research and chatting with my CF team at my last clinic visit, I reminded myself that this blog is not only for venting purposes, it’s also for story telling, experience sharing and information giving. I think it’s so important for people with any chronic illness to be connected to people who are dealing with the same illness so they can share information on what works for them.

So, my plan is to open the gates to anyone out there who may want to share a piece of information that has helped them.

For this entry I wanted to share a few things. At clinic yesterday, my physio and I got talking about CF care in different countries. She told me that in Scandinavia (I think) they focus their therapy around exercise and activity so much that they now rarely recommend postural drainage on kids… and they’ve seen huge success. Not that Canada doesn’t recommend activity and not that you should abandon all traditional physio methods. I just thought is was so interesting to see the difference in care and the success they’ve seen from one country to the next. I think Canada is very good at balancing new therapies with old ones. For me, it’s important to branch out and try new things, while sticking with the old faithful therapies that work best.

As I start gearing up for our trip to Australia (yes, by the way, in case you don’t know, we’ve taken that beautiful gift we received back in December and GOING TO AUSTRALIA!!!! So excited!), this got me thinking. Why don’t I do my own little research project on how things are done outside of Canada. Australia is after all where hypertonic saline first started. So, my plan is to hopefully pop into see the CF clinic in Sidney and get some tips on what they find works well for most of their patients. If I find anything promising or interesting I'll let you all know!

I also wanted to share something VERY exciting in the research front. Here’s an article my Mom emailed me. It’s pretty amazing and it gave me more hope in finding a cure than I think anything has before.

http://www.cysticfibrosis.ca/assets/files/pdf/BreatheUpdate_Feb2011_eng.pdf

Also, for each blog from now on I hope to add a “Kim's tips” section. Just a little tidbit of information on what I’ve found helpful. So... here's the first one.

Kim's tips:

Today's tip... make a person with CF laugh. I'm not talking just a little giggle. I'm talking LAUGH! Laugh so hard you have to cross your legs. You may be surprised at how much mucous it brings up!

Love

Over the past few weeks I’ve been tempted to slap myself silly on several occasions. Last weekend I had the pleasure of going to a fundraiser concert that honoured Eva Markvoort and raised funds for CF. Eva had CF and received a lung transplant back in 2007. This process was brilliantly captured through the truly amazing documentary, “65_RedRoses” which has been hugely successful.  Sadly Eva died from chronic rejection last March. The concert was absolutely incredible and inspiring. There was so much love in the room you could practically feel it coursing through your veins. It was unbelievable. Although I only had a few encounters with Eva in the halls of Children’s Hospital back when we were kids and St. Paul’s Hospital as we both waited for our noses to be flushed out… I grew to know that she was a person that appreciated the finest things in life like feeling the wind on your face on a sunny day while gazing at the beautiful mountains that BC is known for.  She influenced millions of people and that concert was a perfect example of the legacy that she has left behind. Being there reminded me how important it is to grab life by the balls and do the things that you want to do because it can be snatched away from you so fast! I mean snap out of it Kim!!! Since when are you so negative! Since when have you allowed CF or diabetes control you! I've been lucky enough to have been able to accomplish the goals that I had set for myself so why stop now. When you’re surrounded by unconditional love and support by family and friends it’s almost impossible not to succeed. After my last post I was blown away by the support that I received from friends that I hadn’t seen in years. Not only has my family reassured me that they will be by my side through every bump in the road (as they always have) but people who I work with, friends who I rarely see have offered their support as well. I’m completely astounded at the support I’ve received. I feel so fortunate to first of all, have lived long enough and to have stayed healthy enough to achieve the goals that I’ve set for myself. CF care has come a long way but obviously not far enough. There are still so many people that don’t have the chance to fulfill their dreams. I still have that chance. And I’m so thankful that I do. So thank you to everyone who has reached out his or her hand to offer support. Thank you doesn’t even graze the surface of my gratitude. Today I leave you with these words. A little reminder to appreciate what you have. Smile, Laugh, Live, Breathe, Dance, Dream and most of all LOVE. As Eva always said... Love, Love, Love.

Life

My thoughts this week surround a question James and I have been struggling with for the past year and a half. This question feels like a 200lbs weight just hanging out on my heart. Children are everything that is beautiful in this world and can be everything stressful in this world. I have never allowed my situation to control the big decisions I’ve made in my life. Never. Aside from specifically choosing where I live to accommodate my sinus’ and avoiding certain countries and cities to travel in, CF has never stopped me from doing anything really. This is the first time it’s really made me think twice or three or four times about what to do. Choosing to bring a person into this world has to be one of the most exciting decisions anyone can make. For me, I just feel bogged down with people telling me how hard it’s going to be. I know it will be hard, I know it will test our patience, I know it will test my relationships (specifically my marriage), I know I’m putting myself at risk. But, I also know that although my days would not only be filled with sleepless nights and a crying baby along with the daily struggles of CF, but my days would also be filled with what I can only imagine as pure happiness and joy that can’t be found anywhere else. Having quite possibly THE most supportive husband and THE most supportive family, why not! To be honest, I would be a good Mom and James would be a really good Dad. Is that enough to balance out the hardship that comes with children? Is it ok to have your child watch Mom go through a lung transplant? Is it ok for a child to loose a Mom? God forbid. My reality is so different from others and ya I know it could change and I know instead of dying from CF I could actually just get hit by a bus tomorrow (God forbid again) and all of this worrying would have just been a waste of time. But this is my reality and bringing a child into the pure shittyness of CF is something that I am really struggling with. But is that really a reason NOT to have a child? You know I AM healthy and I have done a DAMN good job of taking care of myself and ya it’s A LOT of work but I do it and I get through it because I have no other choice. So who says I can’t do it! Look at what I’ve been through for fuck sakes and look at the fact that I’ve gotten through it! So who says I can’t do it! Nobody really. There are just so many flashing warning signs that jump up at me screaming warning, warning, warning as I take my first step into the idea of parenthood.  I’m so down about this and it really just makes me want to scream, why does everything have to be so hard for me!

Alright enough feeling sorry for myself. I just need support. I know I’ll regret not at least trying. I know I will. Taking the parenthood experience away from not only myself, but from James too feels like a punch in the gut. Which tells me… to go for it. But how do you know you’ll be able to cope?

Fuck you CF. Fuck you for being so controlling and selfish. Happy finish I know. Sorry. I'm a bit negative today.

Between my lungs

Ok so I’ve actually been wanting to blog for a few weeks now but was feeling too flustered by the many topics that have been swimming around in my head. So I decided today that I’m just going to purge a little here and hope that it comes out in a way that makes sense. This blog is about different feelings, thoughts and emotions that I’ve had. It may not flow or have a beginning, middle and an end. They’re just thoughts that need to come out. And might I add… I am putting these thoughts out there for whoever to read even though I’ve never actually shared some of these thoughts with anyone. The word vulnerability comes to mind here. Anyway, here we go.

There have been so many moments in the past few weeks where I’ve felt so overwhelmed by these strong emotions that seem to be flowing through me.  

Sometimes I feel so much love towards the people that are in my life I just can’t bear it.

Recently I read from someone completely unknown to me that life is about balance. A balance of easy and difficult. It scares me how quickly things can change from good to bad and I find this sometimes clouds my outlook. To this day, 2 years, 3 months, 17 days and about 19 hours after the scariest moment in my life so far, my heart STILL sinks into my gut when I get a phone call from a number I don’t recognize when James is not with me. It’s unbelievable how your brain will remember an experience and bring it to the forefront of your head in the blink of an eye. And with one word, relaxation overcomes those fears and I again feel like the luckiest person in the world.

But, at the same time I can’t help but feel completely terrified of the possible future I have. This is always reinforced after hearing about someone who is facing being put on the lung transplant list because their lungs are giving out caused by the same disease that I have.

At this moment I have to take a step back. Go for a walk, take a deep breath and realize that these two things are so easy to take for granted.

I’ve been noticing the pure beauty and joy in the world lately and am quickly flooded with emotions of contentment, relief and good fortune.  Everyday I think about people who’ve had their lives taken away from them far too early and begin to thank my luck stars that I’m still here… able to run, smile, laugh, breathe and love the people around me. But at the same time, I’m petrified of that being taken away from me. I’m then reminded of the importance of living everyday to it’s fullest. As cliché as that sounds. 

Between my lungs is a warm, bright, glow that allows me to smile every moment I’m reminded of how much love I have.  With whatever future that may be mine, easy or difficult, there’s no way I’ll forget these moments in life.

I can’t remember where I heard this but it’s something I’ve been gaining some strength from… “There is no force on this earth more powerful than the will to live.”

Not much else to say.