July already

Just a quick post (frankly, to drown the one below).

Its almost a year since my sweet little nephew was born. Unbelievable.

This has been a week of reflection following a week of stress. It's been different and interesting and I'm coming out the other side feeling somewhat refreshed. Being reminded that things have both gotten humdrum as well as "too much" simultaneously will hopefully result in some new goal or other when I am back home tomorrow (been housesitting).

My health is stable but cyclical as always on its monthly rounds from bearable to barely-so. It seems my newest cyclical symptom (pain in my right chest) isn't back the way it appeared the last two months, which is a relief.

I assume I'll be back for my bi-annual transplant visit next month, and will also be booking a regular clinic around then as well. It's probably time I discuss fall and winter again with the docs.

While I ponder..

Anyone who knows me knows that one of my favourite things to do while being at this low level of health is to try and make a little extra money. I favour points sites that are easy to use, but not monotonous or time-consuming. A new Canadian company that has started strong is LikeNet. They put a twist on the typical points-delivery by directly campaigning businesses to advertise with them. The difference lies in the variety of advertising options.

Backing up a bit, as someone who simply wants to make a little cash, MY responsibility is to check in (each day ideally) and be offered points in exchange for 'liking' a company on facebook, completing a short survey (like one or two questions usually) or reading through a website in search of a cash-providing code.

If I had my own business.. or even say.. a blog (wink wink), I could decide to use my own money or even my LikeNet "points" to fund getting extra viewers to my page/blog.

For me doing things like this serve me well on a couple of levels. I feel like I'm contributing to both my own enjoyment (money for little gifts for myself on a rainy or hard day) and my families goals for the future by not limiting myself to whats available to me before I can go back to work.

I also hope that one day when I get my full life back, this time will have taught me lessons in frugality that I can condense into something usable in the busier future.

SoftCorp Media Victoria | Web Design, Social Media and More

30

I have had a lovely spring. My health has been constantly stable and positive for months overall and I've had the opportunity to do little things that make me feel I'm living my life still.

Most recently (frankly, I have the memory of a goldfish and can probably only go back maybe a month at best) I turned 30 surrounded by a small group of family and friends at my parents house. I had wished for a backyard barbeque, but the weatherman let me down and we were rained into the house. Still, we had chicken and sweet potato fries, a gorgeous cake specially-designed with a few of my faves (colour, flower), a wonderfully touching suprise of a professional photo of the kids in my life, my nephews and neice, all together, and countless more spoils that I couldn't possibly deserve.

My husband had two weeks off this spring as well, which always intimidates me because it means for two weeks I have to go without my couch-naps (we live in a very small place with no doors... so its difficult to find quiet and space). Lucky for me, hubby loves golf and spent a good amount of time doing exactly that, but we still managed to do a few interesting things together like travel to the U.S and niagara falls, the drive-in movies, etc.

Transplant of course drifts in and out of my head, muted but there. Ive recently had a new symptom that has plagued me a week out of each of the last two months (love being a woman.. NOT) and if I see it one more time I'm going to have to get concerned that my lungs are crying out for a change..
The worst thing about CF is how different everyone is. How unpredictable the course of it is. It never becomes acceptable.

When I came to write this new blog post, I caught a glimpse of a blog I used to read called "CFhusband". Tricia Lawrensons amazing triumphs over low lung function pregnancy, high risk transplant, and cancer have been a source of strength for me. Today, however, I found her in yet another position of fragility facing heavy-duty organ rejection. It saddened me to say the least. One of the big issues especially with people like myself who struggle to make the leap to listing for transplant, is whether or not its wise to subject myself to negative stories and outcomes. I've always been of the mindset that there is no sense fooling yourself about anything, and the best kind of positive attitude comes from a realistic place. That said, I no longer read CF blogs and search for new ones and topics I wonder about. I follow my select few friends blogs to support them, but I know whats going on with them anyways. I feel I have closed the door on my phase of exploration, for the best.

Everything has a reason I believe, and maybe theres something in the Lawrensons' next chapter that I should see.. because I am back reading and praying for them now. 

Favourite Lesson of Life So Far

Calm. Relax. Seems pretty cliche... seems easy even. I remember elementary gym classes and recreational gymnastics with warmups and cool downs involving "think about every muscle in turn and relax it. Let it get loose. Ok, first ankles.. 2...3...4... now knees...2..3 ". I always thought it was such bogus. Now, its my entire lifeline and philosophy. I can't even quite be sure of the source.

Approaching 30 seems feasible. My mom always said that the 30's were her favourite because its when things started feeling in place.. you feel really adult.. like for real this time (unlike when you were 16, and then again at 25) and you just know who you are. I definetly think thats playing its part, but moreso its my CF and its progression.

It's effect is many-fold (real word? This 29 and 11/12ths year old doesn't care). The first I learned when I fainted from coughing in 2007. Apparently coughs that go hack-hack-hack-hack-hack-hack-hack-hack-hack-hack-hack-hack (etc) without a breath deprive your brain of oxygen. Who knew? So since then I cough "carefully". After about 6 hacks, I do everything I can to suck in a breath before continuing. Much harder than it sounds but I can proudly say that I haven't fainted since. That's #1.

Then theres physio. I've struggled with physio. From not doing it forever, to finally getting tough and doing it daily.. I find myself finding excuses why I "can't do the flutter tonight, ill stick to the easier percussion..." or... "one physio is enough today.. I dont have a book to read while doing it". Needless to say, at the very least I thought I should get more quality in, if quantity is always going to be an issue. One thing I realized FINALLY in the last yearish.. is that as someone with a chronic cough, I pretty much tense my lungs, butt (tmi..sorry), bladder, stomach... all the time. Preventing coughs, or just making sure only one orafice leaks (tmi x 2) is high on my subconscious priority list. So. One of the things I've started doing is trying to relax all my muscles once in awhile. And, during physio, or when I just know i "need to cough".. I go to the bathroom. I sit on the toilet or in the shower.. and I feel much more able to take bigger, slower breaths, and cough more effectively. I'm even getting better at coughing slower, deeper, better (get more air behind the phlegm I once heard and stuck with me) without being in the bathroom ;) .

Finally, with the anxiety that has become an unwelcome constant in my life, I embrace calm in every form. I try to not be quick to snap (never gonna perfect this--I AM a girl afterall) and take things with a grain of salt. I'm lucky because I've always been about a 3 on the high-strung scale. Ironically my biggest anxiety/stress/clench my muscles trigger is other people acting stressed out. More and more this gets to me. I find myself either flipping out and losing my control of my fragile lungs and oxygen supply, or trying to problem solve their problems quickly. One of my fave CF'ers had this way of being the calm, funny one virtually all the time. I aspire to take that with me, and as I get sicker I understand the need for that approach more.

Lastly, anything that can't be turned into calm, should be turned into motivation. Don't sweat the small stuff, and to risk copyrighting JR... Take those lemons and make a lemontini.

2012- 11 months till I escape transplant?

Dec 21st, 2012 eh.. That'd be a cool day to get your call. Not knowing whether not just you, but your entire surgical team, family, world was waking up from that one. Maybe I should write a book about that. Hmmm... short story contest I've been contemplating here I come.

Since my last post I've been back to the transplant hospital for my one year followup since assessment. Hubby was fighting off some sort of sinus thing during that time and I felt worse for the wear myself, though I never actually caught it. All excuses aside, my numbers were "similar" but ever so slightly down enough to be mentioned. The doctor they assigned me a year and a half ago kept up his emotionless support of me continuing to wait to list, with a side mention that my other clinic tends to rush people through the process. I'm not really comfortable with the underlying tension that apparently is there between the hospitals, but I digress. I also found out that this doctor, the one I've tried so hard to know and bond with, is retiring before my next scheduled visit to him. That was a strange feeling. Being basically wished "good luck with this big journey you've hardly dipped your toes into". Next visit, should it remain 6 months away, should be very interesting...

(((((( This post was written several months ago and not posted)))))))

Empty Transplant List

Not literally, but it feels so empty now. Beckoning me. The monster that ate all my friends.

Early early this morning my good buddy LB got her call and later her surgery. She did so well so far, despite some tricky antibody shiz that had to be overcome (her donor was the perfect match for her uniqueness, and we expect and hope that means she's likely to continue her smooth sail into recovery). LB was the last of my friends on the transplant list. Also the last to be anywhere near transplant in my opinion... minus me of course. We are talking 3, almost 4 straight years of having someone to cheer for. Someone to hope for their call, to excitedly await what they "will be like" with a "normal" body...

This feels on purpose. Fateful. I dunno... maybe I subscribe a little too heavily to the 'everything happens for a reason' publication, but I always feel like things line up on purpose in my life. I think I'm meant to travel that transplant road without CF co-travellers, but I really can't imagine why.

People like LB inspire me to get on that list now. She listed at a perfectly appropriate time (we've matched lung functions for over a year- yikes.. I'm behind... ) and got, knock on big fat wood, the reward. The way it should be. Sometimes this inspires me to do the right thing. Othertimes I irrationally imagine that for every good transplant my friends get, the more likely mine will go crappy. Someone's has to afterall? Too much thinking. Not enough doing. Thoughts are poison.

ANYWAYS, life is still good. I had my clinic that came 3 months after the previous one. A small victory of staying away from SMH for that long without a hitch. I did well considering. Gained weight, pfts about the same, transplant non-listed status accepted by head honcho doc. Blah blah rah rah. I'm glad, but not proud. I will feel scared, but incredibly proud when I take my leap. Of that, I'm certain.

Monday I got to try out the other side of the fence. Another meant-to-be. Mom had emergency appendix surgery. Thankfully we google-diagnosed her relatively early but it was awful watching her in pain, and hard to wait the short 45 minutes through the surgery, and the long 8 hours leading up to it.. despite its routine-ness. The kind of thing that hurts knowing you're going to do this to your family again x 8 hours x major surgery. Youch.

LB, since you're better.. I guess we wont' be seeing much blogging anymore since thats your M.O.

Couldn't be happier for you.

Bike Bike Bike

Miracles still happen, don't they?

My lungs sure think so. Somethings more 'right' than usual. I'm half trying to analyze it to death so that I can cling to it, and half trying to play the "if you truly love something you let it go" card and just enjoy it... haha.

I'm taking this opportunity to do more, not less physio. More, not less-----er, no---bike (I've been awful at it, with the excuse being summer weather doesn't warrant stationary bike use). When I used to come fresh out of i.v.'s I tried this too.. hoping to hold onto the good. It never seemed to work but that's no reason to stop trying, right? Right.

I've wondered about a few things causing my downswing in.. I think?.. Inflammation symptoms. One hypothesis is being out of azithromycin for 6 weeks turned into a discovery that I'm better off than on it? Another could be new nephew Elijah's magical baby cuteness cures lung problems? I like to credit the baby, especially when he decided to allow his first laugh-a-thon to be hosted at Auntie M's house the other week. Super early for his age, I might add.

Just when you think you know your health pattern, it changes. And for once I'm grateful. No hospital admission for me this October.... she proclaims on the 5th, nervously laughing...