Chains

6 Months listed is coming up.

I think back to that first day that I signed the paperwork putting me on the transplant list. How much I physically shook after the surgeon told us they have had to chase the signee down the hall when lungs came available that quickly. I think about how I jumped out of my shoes the first time the cell phone rang.. it may have been that day. I think it was. On the ride home. It was all such a different time and in hindsight so ridiculous.

Now I feel stale. I feel like Ive ran through every stage of thought process around waiting. Resistant, reluctant, indifferent, distracted, content, eager, tired.. I feel like I don't belong waiting anymore. I realize there's people who wait double, triple the time I have. I can't ever understand that. It's not that I'm desperate really.. it's not that kind of terrifying feeling of 'I won't survive much longer". Not at all. It's just a worn down day-in, day-out difficulty of dragging around chains mentally and physically. I want to be looking up a staircase out of the dark, not down an eternal tunnel.

It's hard to fathom that this mental torture would be eased simply by everyone being on board with organ donation. So simple. Makes me all the more grateful for those that are. Knowing the gift I will be given is not only literally precious, but that special people make it possible at all.

Based on my history, I can feel pretty confident this will be my last blog post before I get my lungs. It's been two weeks since I got my first call saying they had found a match for me (donor didn't work out in the end). There will be social media presence elsewhere before this is next updated.

6 Weeks Later

I didn't think I'd still be waiting. When you're scared of the call you think it's coming fast, when you want it you think it's coming slow.

I know this, because now I want it wholeheartedly.

No longer do I feel guilty when I forget I'm waiting for the call and I relax and get lost in an activity. I am at ease completely with things. The call has become a welcome visitor in an otherwise unpleasant day. I still occasionally think "oh.. now would be a bad time, because I'm tired/hungry/sick" but ultimately I'm not going to feel great when the call comes, so who cares? I kinda just want it to happen when I'm not deep asleep at night. But you know, that desire is like wishing for a certain-gender baby. It's kind of wrong to even let it grace your thoughts amid such a potential gift.

I make plans without flinching half a week ahead now. I guess it plays in that the Ontario Trillium site shows that since I've been listed, maybe 4 people with my blood type have disappeared from the list (optimistic assumption: received lungs). It's super slow-going. I guess it always is, I just didn't CARE before like I do now. I've reached the point where I want to start an organ donation campaign. One of the clever ones that gets attention. Not easy amidst morning headaches, i.v. schedules, naps, hospital appointments, attempts at proper nutrition, etc. A couple more days of waiting, though, and I will start brainstorming.

Bottom line, I'm tired of this. I used to think "well, if I dont do well through transplant, I need to maximize and enjoy this potential end of my life. Each day being a blessed extra one" but this is no life. I have suddenly gained the ability to see the positive and negative stories of transplantees and only believe the good ones will be me. That's huge considering I'm a foot-stomping realist at heart. Self-preservation really does come natural.

Here's to a January gift to let me briefly sleep and then improve while the weather outside is frightful. I envision the spring full of gratitude and improvements and everything literally and figuratively coming up roses.

Listed for lungs- What I didn't expect

I think I can start off my list of things I didn't expect with the desire to write down my thoughts in the blog again. I thought the facebook page would satisfy me, but it turns out that I don't want to drivel on and on and have it appear on everyones feed every day. So perhaps this is the start of some therapeutic public journalling again. 

I've been listed for transplant just a short 3/4 days now. I'm not really sure which day to count as day 1, so I called the signing day "1" since in theory I could've been called immediately after my name was written. The surgeon told me stories where that actually happened, so I was terrified as I left on Monday. Bless that wheelchair I am carted around in. I don't think I could've walked after that information. I really didn't expect that I would mark down and count the waiting days at all. But, alas. I am.

I didn't know I'd check the trillium gift of life waiting list every day.. or... you know, hour. 

I definetly didn't expect to have zero actual panic attacks in the past 3/4 days but instead a tremendous amount of jitteryness (as if Id drank 6 pots of coffee) and stress. When I do somehow manage to slip into my normal routine and calm down, inevitably I remember what could happen at any time and I berate myself for forgetting because I think I need to be "ready". Whatever that means. I compare it to when someone you love dies, and you laugh too soon after and you feel like that's completely inappropriate for you to be enjoying yourself. I feel like that. I can't allow myself to enjoy relaxation. I need to fix this immediately or I'm going to get sick. 

I didn't expect to feel good the first day of transplant physio, and to kind of love it. All the good feelings are subtle, but I think its because for once in my life torturous exercise feels like it has a purpose and an endpoint. No more exercising to desperately claw to my current level of health (and fail, because.. thats CF). Now I fight to hurry up and get as strong as I can to bounce back well from surgery. I fight knowing that anytime now I could be briefly (I hope!) bedridden and then exercising to IMPROVE for the first time in my whole life. This is a source of stress for me too, though... as I am now praying the call waits a little bit. Just long enough for me to condition myself a bit. I just wasn't motivated until it was this late unfortunately.

With so much to say with so little of this journey accomplished... Im sure another post is soon to follow. 

Still gonna blog, BUT...

Hi.

It's been way too long.

I can't seem to get around to giving the blog the attention it deserves so for now I'd like to direct anyone to my facebook page that details key moments in my health journey. I am trying to find a way to keep my loved ones and supporters informed as to what's new and what direction things are going.

You can find that page here




Thanks for reading.

Coping

It's been a whole bunch of awful weeks. Today I feel the need to summarize them all under the term "coping", because I am realizing how important that little skill is. It might just be the most important thing a child learns.

I feel I've been out of the awful stuff for about a week now. Yet today coping was up there in lessons all around me. I spent the last 24 hours being enthralled by the youtube sensation Talia Joy. A 13 year old cancer-fighter who I've heard of but went looking for only after hearing that she had died this week. I wanted to see what all the fuss was about, and boy was it worth the fuss. She embodied everything that is coping with the most difficult of diagnosis at the toughest of ages. She reveals that she clung to makeup after a family friend who also had cancer showed her some makeup tricks. It got me thinking today.

Sometimes I wonder why people act out in such seemingly small circumstances. The people we call dramaqueens, or those who get a little too angry at others and seem so self-centered. The substance abusers, the hermits. We all have our thing. And when we don't, the worst ones emerge. At my age this shouldn't be a revelation, but when I look at myself, and those closest to me, it is. Examining coping helps me help the ones I love. Well sorta. It can be a bit frustrating when you realize what someone has lacked and simultaneously realize that you cant grow it in them the same way as an adult as one would get it as a child.

Point is, we all need to look at coping over and over again. Just when you think you've learned it, something harder can come at you. There's no shame in taking a page from all the best books and forming a bulletproof coping encyclopedia for yourself.

31

I resisted the urge to write "dead by thirty one" since im pretty sure thats a band that's popular right now. Maybe they aren't popular.. or maybe its a song... what do I know.. I'm friggin 31 (tomorrow).

Last year I was pumped about my birthday and I fear it may be the last time I'll ever feel that way. I can't picture a situation where I'll be excited for it again. I'm not saying that I'm dreading it.. I also can't see myself ever being dejected about being "old".. since being old is something that's such a gift. Shoutout to my sparkly-winged angel Carla for cementing that one in my soul.

Ive had a rough week. It went down kind of predictably I guess.. the last motivation I felt being Saturday where I bounced around and announced to Mike that he should ask me for anything (keep your thoughts clean readers) because I was "in a great mood". I made a bunch of different foods that day.. it was fun. Sunday came.. and the clouds rolled in in my mind. Sunday was the CF walk, which I again didn't attend. I don't miss anything particular about being at the zoo.. in fact its downright repetitive and busy. It just kickstarted a thought process that hasn't ceased. I think it had a few other components to it too... such as how on Friday night I went to my sisterinlaws Stag n Doe and had my first alcoholic drink in a year and got a taste of youth and fun again.. and kept up with shouting over the loud music sensationally well, I might add.

Anyhow.. Id like to think that I'm starting a new week and year tomorrow.. the physical rain clouds and muggy weather needs to take a break.. I need a good massage.. and some pampering (my gift from my sis in law is gonna be a pedicure) and to get over myself before my TGH appointment. It felt like eternity from my last St.Mikes visit to this TGH one.. I had so much to experience in between.. one thing being my first experience of a pregnancy ultrasound (cause those echocardiograms just aren't as memorable). Turned out, however, that while the ultrasound was very moving, especailly at first, that sis and I were blessed with a newbie of a technician, and it was so poorly done that she has to have it redone.. and we didn't even find out the gender of baby G. Boo! Bad week all over. Have a drink and a dance for me tomorrow if you are so inclined.. celebrate living :)

Update

I apologize for not following through with the April 9th progress report. Clinic was not good and I slid into a bit of a down phase.

My lung function is now lower than it was prior to my hospital admission despite anything I tried to do. Oh right.. what I tried to do lol... I was exercising. I had a whole plan mapped out. It was a modified program to gradually increase exercise time and resistance for I believe 12 weeks total. I was using my stationary bike. I also had a weight-lifting plan as well.

As predicted, as soon as I got the bad news, I dropped everything. I've really never gotten much headway from ivs for one reason or another, and therefore this cycle happens everytime I go in.. but this time was certainly the worst since I tried harder than ever before.

Anyhow, I'm now focusing more on the anxiety aspect of my health. I'm trying to be busy.. I'm trying to see more people and go out more socially. I'm trying to get exercise from doing chores and feel the satisfaction that comes from getting things done. I'm also working on some mindfulness techniques to handle stress and anxiety.

All in all.. I'm ok... I'm just trying to change how I measure success in my life.