When every day is a lifechanger

Being absent in the blog world for a month or two doesn't sound like something that would require a long list of catching up. I'm learning more and more that CF is a window through which we can see that life actually DOES change very often, sometimes for the happier, sometimes not, but always to be respected and appreciated.

I wish I could recall my entire time since the last entry, but recent events shine louder and therefore thats what I can think of. This week I lost both my grandmother and a close CF friend. Mere days apart. In their own way they were both shocking, as I have never lost a grandparent, and because this particular CF friend radiated life even at her sickest. I have never felt so robotic after deaths as I have this week. I'm not sure of the cause, but I know that "growing up" can vaguely cover it. Theres something about losing people who you've actually spoke of death with (CF friend, and the CF friends I lost since 2008 did not have this talk with me, so this is new) and theres something else about losing people that are closer and closer to yourself and are immediate family who have always been there (Gramma). Both things seem to bring an eerily deep truth with them.. that we are all going to die. No one is exempt. Being 29 when this is being driven home is odd.. and yet I feel like most people are actually older, not younger than me when they come to this realization...

I'm spending today, my first with no "busy" thoughts or stuff to do this week, organizing my thoughts. Because of this, I don't have much more to say right now.. but its funny how things pop out just during the moments you think you are having a mental break from it all. I was cleaning my fish today.. I always run his new water a few days before I switch him because I know the chlorine and chemicals in tap water need this time to dissipate, also it helps with having the correct temperature ready for him. As I fought him into his little net from his very grungy bowl (due to the events of this week) I said aloud, "dont fight it, just trust that you're going to a better place" and there it was.. another metaphor for life and death. I swear I wasn't trying to think of one either, but as I lifted him in the net, forcing him to lay in pure air for a few seconds as I moved him, I felt for that little fish, and how often I force him to do the thing we have to do when we leave this world.. have a little faith and get through the transition to a better place.

New Year

August feels so different. There's this new baby nephew of mine, who I'm loving. There's more babies and plans on the way this month.. showers, birthdays, busy busy. I'm starting my new agenda/journal thing.. I remember starting them every September in school and pledging to write neater and be more organized. Then there's the ever-present transplant.

The reality-check of CF oddly enough hits me (us?) over and over, but right now it hits harder. Seeing my baby sister get to move ahead of me with her gorgeous child, while wonderful, is hard. Don't get me wrong, I most certainly don't mind that she's first to have this. In fact, I love it. She's always second, as most second-children are (to reach milestones, and in our case, to marry) and I think its cool for once she gets to have something first. BUT... because she's younger, I can't just shrug off the symbolism.. I can't tell myself "its her time now, and mine later" and move on... because I am older, because Mike and I wouldve wanted kids fairly fast if things were different (because we want to be young with them, and because I'm like every other woman with a ticking biological clock). For these reasons her mommyhood symbolizes for the first time in my entire life, that I'm different and broken.

CF is fantastic for that, really though.. I mean we are lucky that for the most part and thanks to research we CAN live normal lives. I'm thrilled to have gotten to go to school, to date and marry, to work.. I am forever grateful and wouldn't change my life. I know I got a lot more than so many others get. And when I get sad, I've been remembering something lately. My sister was born to be a mom. I wasn't. It's very true. She had dolls and loved children and babies ALWAYS. Me? Not so much. I always pictured myself with kids, like most people do, but I didn't long for them like she did. I longed for love. A fairytale one. And as I find life goes, you get what you need, not what you "want". It was when I fell in love that wanting children began. I wanted to bring our love to life. Sorry, want, present-tense.

I'm not 100% done with hope. I'm really not. I'm just the type who likes to be okay with life, no matter what it gives me. And that's what I'm working through right now. Because I know I'm lucky, no matter what the future holds. I'm lucky and I'm happy. There's still surrogacy, and adoption, if things for me go well. Which brings me to transplant... I have officially met my goal of seeing my nephew born before listing. I'm very proud of that and he is worth the moments I've had already. It doesn't make big choices any easier. Somedays I long to list and move on and have my chance to breathe and feel free. Other days I want to wait as long as I possibly can, knowing the uncertain future that transplant provides. I can promise you one thing, I doubt I'll blog about this again. I have no more reason to wait except following my gut and the guidance of the doctor's. No more reason to research, to plan. I'm "ready". I know what is ahead, its just gonna come when it comes, and that's how it has to be.

Happy 29th birthday today to my fabulously supportive husband who is always willing to ride this rollercoaster with me, who gets stronger everyday, makes me prouder every day, and makes me believe that we have a purpose, together, that hopefully isn't fulfilled for a long, long time.

Baby Love

July is here

Hi folks.

Nothing much new here. I'm the same, which is more than I can say for a boatload of my friends. PErhaps why the urge to blog comes ever-so-slightly, I write half of one, then don't post (also blame firefox for being the only browser that WILL post.. and I'm an IE fan.. you do the math).

This past month has been busy-er-ish. Lots to do. Birthday's, showers (baby for 2011, not bridal), golf for hubby (more time alone for me: totally fine), nicer weather/invites for BBQ's (I'll admit, going out in general no longer thrills me... bad Michelle).. etc.

This month saw two clinic appts, one at my regular clinic which produced magical fake higher lung function results. I still don't believe it was any more than a machine glitch, but it sure was nice to stay iv-free for longer. Total fate, I swear. I keep saying that I'm confident that I am health-safe till after my sister has her baby. I believe its fate for me to be completely stable until then.. and here we are in July, now, at last.

I also revisited my transplant hospital since it has been 6 whole months since my transplant assessment. I saw doctor quiet-voice for the first time since a year ago when he turned me away saying I was too early for transplant. Ironic, since I've gone from angry at him, to almost being super grateful for him as I implore the universe to let me see my bloodrelated neice/nephew come into this world before re-entering hell. He told me this week that he will "see me in 6 months" and that he is completely content with me waiting to list (even though I was told in Feb that it was time). Dr quiet-voice doesn't really have my confidence.. I think those of us who decline the slowest are the most in danger of missing the boat for transplant, even though that may sound counter-intuitive.

23 days until my sister is due with her baby and I can revel in possibly the only child I will ever know to have genes of my own. Of course, I look forward to more than that. I am eager to see my whole family excited. For my sister and her husband to experience the wonder of parenthood.. the blessing of it.. and for my parents to be the excited/fun-loving/spoiling/etc grandparents they were destined to be. If I could only also see my husband be the father he is destined to be, I am pretty sure not getting to be a mom would almost be okay in my life. I will have 3 gorgeous children to watch grow and who's lives I can impact, and I feel blessed for even that.

Here's to July, and focusing on the crazy-exciting and letting the scary decisions rest for just a little bit longer.

29

Well, I'm reaping the rewards of a decent clinic and thoroughly enjoying my time with hubby. I only hope I can do the same next week and get another ton of time with him. My ideal lifestyle right now is having him around (and doing a few more outdoor activities than usual), but also having him leave me to do more active things daily so that his mind and body can be exercised to what a healthy person needs, while I rest and do treatments. I know this is a hard system to create for us, being a couple who essentially is attached at the hip, but slowly I see it working and it gives me a lot of peace of mind. I like seeing my man happy, and it helps me relax and focus on taking care of myself when he is. He will have to adjust again one day when I get my mojo back with new lungs. Something tells me that adjustment will be easier.

It's getting hot out, which doesn't thrill me, but I suppose it still beats the constant rain we've been having. It's sort of a lose-lose situation for 24% lungs.. I actually don't mind the rain at all except that we can't really walk the dog in it, and therefore have almost no reason for getting some outdoor o2-accessed walking happening. However, with the humidity, at best I can walk a tiny bit then have to return to the car or house. I've also found that since only a few months ago I was upgraded to a portable oxygen system that is too heavy to be carried, that our usual park walk sucks now. So far the grass has been too muddy anyways, but even when its not, the wheeled oxygen just struggles to navigate the field. Today we took the street instead, which may be the new way of things. I do enjoy watching Bauer play with the other dogs in the park off-leash though.. so maybe theres a way to do both.

Lately I've been getting into a few new ways to earn freebies while I sit on the computer so much. I had my contest thing, and now I have swagbucks. You can see the widget on the blog here.. what it is is essentially a reward program for (I believe) letting these people see what you're searching online. You use their toolbar and earn swagbucks for doing so throughout each day. You also get them by doing daily polls, finding codes (on their facebook page, eg.), playing games, etc. At first I was skeptical, but I found them while contest hunting and they were referenced on moneyville.ca.. which seemed like a reasonably trustable site. Swagbucks can be redeemed for lots of gifts but I'm interested in the amazon.ca gift cards. If you're interested, please let me "refer" you so that I get bonus bucks lol..

Oooh I just realized that I titled this '29'. My birthday is on Wednesday..I will be 29 and it feels scary. On the cusp of something big... 30. Ironic that it parallels my path along the cusp of something else even bigger: transplant. A lot of CF'ers value the attitude "don't regret getting older, it's a priviledge denied to many" with which I agree wholeheartedly. With that said, feeling a little uneasy with age doesn't make me ashamed, it makes me feel normal. That feeling is priceless and elusive sometimes, so I'll take it.

Happy hot weather to all you who can fully enjoy it, and to those who can't, keep your head up and find a way.

Loving Flukes

I had clinic this week. A mixed bag of results. Weight down 2 more pounds for a now-total of 6. Pft's up higher than they've been in 6 months........... on the first blow. But I couldn't repeat the wonderfulness.. subsequent blows went down and down. Depressing, but I got my ticket to no-ivs so I walked away pleased with seeing something different for a change. Though I'm back in a few weeks to see how much this shaky result can hold up. I agreed with that plan fully, and honestly expect to finally get hit with ivs next time around.

Whatever, it was fate that in the next few weeks I get to enjoy my birthday, Hubby & I's 5-year dating anniversary, his first of two-weeks off, before possibly missing out on real life for a bit. I'm treasuring that.. because at first I sat in a pool of selfpity for a few hours post clinic.. despite the good. I only hope my ability to shake off those sad sack feelings quickly stays with me for the long haul.

My blogs bore me lately, so theres the update and we'll see if I can take some classes in being interesting before next one! (spoiler: nothing's going to change)

I'm doing an experiment

It's a little late in my original-lung days to do this sort of stuff, but with all the time I have I just can't resist...

I've wanted to address this for a few years actually, so I kick myself for waiting, but I have had trouble with pulmicort since the beginning. I haven't been on it long, really. We added it in '08. And truthfully, I'm fairly sure that it doesn't do me a lot of anything, because according to the pro's, I don't really suffer from the asthmatic component of CF.

However, we all have some inflammation, and since that's exactly what pulmicort attacks, the potential is there. When I was first given pulmicort, they had me do this test involving a mouthpiece and 3 little lights that you had to light up with the power of your sucking-in reflex. It took me 8 tries at the time, and all of my energy to make the minimum number of lights light-up. I remember thinking... if I am just barely struggling to do this after repetitive tries... how does that confirm I'll hit the mark with each dose of the drug everyday??

Meanwhile, during every clinic visit I noticed that the wall advertises 3 forms of the anti-inflammatory inhalers. One called "flovent" is given in the ventolin-style inhaler, for which you simply use an elongated tube, press the button, and breathe in gently and hold. MUCH easier than this suck on a powder-containing-tube crap. At 22% lung function (yes.. down again at clinic yesterday...) I am significantly crippled beyond even the struggle I faced in 08 at the beginning... To make a long story long, I found out yesterday that the only reason we are given pulmicort versus flovent is that flovent is not covered. I HAVE PRIVATE COVERAGE!!!

As someone who sooo rarely has a raging lung infection, I think this change has huge potential for me. Not "avoid the list" potential, nor even "avoid the looming admission" potential.. but perhaps just "find an even greater stability of symptoms" potential. Every little bit counts, people! I will let you know what I think, if anything, of this change.