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.

As April Closes

Hmmm new new... I struggle with new stuff for the blog lately, which is sad because I'm barely writing once a month.

My health is stable it feels at least.. clinic hasn't let me in for my standard once-a-month check because they've been busy, but I go next week to see what the numbers show. Apparently this week had a few cancellations and was "practically dead"... no doubt my scheduled-in-advance-by-3-weeks appt will be overloaded and packed. There is no organization, no matter what they try.

Lately I've found myself organizing everything around here, especially health-things. It feels like something that improves my world, as opposed to the worsening that is constant in end-stage CF. It's uplifting. I put hooks on the wall to store the excess O2 hose, as well as one that I can loop the nasal prong part onto right beside my bed. Since I pretty much only use oxygen for sleep around here for now, it works wonderfully.

I'm still eagerly awaiting my sister's child's birth, but still 3 months to go. 3 very important months that will be both fast and excruciatingly slow. It feels a world away.

My husband has some vacation time coming up next month, and its hard knowing that travelling anywhere has become harder as of December 2010 (because of oxygen at night). If you talk to me about anything involving going away, you might get the impression I have grown tired of it in my life, but you couldn't be more wrong. It comes up alot in my family, because we've always enjoyed adventures together both small and large. From a day at the zoo, to quaint northern adventures, to luxurious caribbean cruises. When we talk about it now, I visibly shrink. I know I do. I've always been very expressive. When no one is talking about travelling, I barely think about it. I know those days will return.. but for now I put them away and enjoy life as is.

Anyways, so I'm not sure what the complete plan is for my husband's 2 weeks off, but I do know we've talked about renting a jacuzzi for our backyard. They have a company around here that rents them out weekly and will even let you keep it at no charge for a few extra days if its not needed for rental immediately after you have it. We've always enjoyed our jacuzzi time, and since there are some strong restrictions around them post-transplant, we may as well jacuzzi it up wherever and whenever we can now :)

Here's to enjoying life, whatever its restrictions, because it's beautiful and short. I do it for me, and in honour of people like my friend B who I miss very much right now and is needing prayers in the icu of our transplant hospital.... as she fights a mysterious problem the doctor's can't figure out...

Fight of our lives

I wrote this over a week ago, and a new one tonight.. but ive had some trouble with my browser.. so now that ive figured it out, here it is:



I think about transplant everyday. Today's angle finds me beyond the (petty?) fears that hold me back from listing. I'm thinking almost as if I have already done it. Bizarre.

I was mentally trying to pre-arrange some of what's to come. Today, if I can find my coordinators email, I am going to try and set up getting done any vaccines I may need to get before listing. Also any dental work, etc. Beyond this, I was realizing I should really get set in stone who is going to take me to the 3x a week physio, when and how. I know it can be done, but I'm realizing how much of an undertaking this whole part will be. Even for a healthy person it would be.. but add in doing this at the sickest and hardest part of your life. Its a wonder any of us get to the surgery, let alone thrive afterwards.

I also begin to understand the people I was told about during assessment. I see how some misguided souls feel that after all of this work, they are owed a "normal" life. I see how it could be easy for the reckless to think, "I don't want to take antirejection meds, or follow the guidelines of what to avoid.. afterall, look what I did to get here?". I feel pain for those people suddenly, instead of chuffing at them as I did during assessment. I rolled my eyes just 2 months ago and said to my coordinator, "don't worry about me, I can guarantee you I won't be one of those morons". I still won't, but today I feel like those words were extremely and unforgivably cruel. **sidenote: I'm pretty sure I didn't actually say 'morons', but the implication was there**

I also understand my stress even more. My anxiety. In a way, today was about forgiving myself. I'm being pushed everywhich way lately on 'to list, or not to list'. Mostly to list, and I'm grateful for the friends that are guiding me to be strong and to plan for the scary cliff that is probably closer than it appears. Your coaching, paired with my lifelong sense of duty (and hopefully a pinch of luck) will be what gets me to the other side. xoxo