Living by intention, not circumstance

Hi. I've had a really thoughtful, quiet, busy day. I like days like this. They are my best and favourite days (as far as the past 2 years goes) and yet I don't feel like I'm gaining ground really. Let me explain.

As I've already explained, my best days involve being busy. I sit on the couch as usual, but I get up every 5- 10 minutes for periods of 5-30 minutes. I cook, I clean, I shower, I take the dog out, I take pictures, make crafts, enter contests, make lists, make coffee, read a few pages of a book, brush my hair while dancing to music, open the window, take a trip out for window shopping, you get the idea. I feel active and stimulated, and my body feels at its best.

I've been trying something new to combat the pre-menstrual lung issues. I've been taking an advil every day for about 4 days, and will continue for one more week. As of tomorrow, I'm going to double my pulmocort for a week. Thats' it. So far it seems like it might just be working too. Either that or the increased indoor exercise is doing it. Or it might be a circular thing.. advil=more exercise indoors which makes me even less short of breath which = more exercise and so on. I think I've gotten lost on a tangent.

Anyways, so these days I tend to get a lot of minor things done. Booking eye tests, getting the car washed, eg. and it makes me feel useful. Sometimes, even a little growth happens if I read a good book, have a deep conversation with a friend or whatever. The point is, I'm okay with my life mostly. After so much thought about how scary it is to have a statistically low lifespan, and how sad I am to be finished with working, I do realize that at the end of the day, we all only have today and can only control our actions today.

I read this facebook group once about a CF patient who got a transplant and then made it a few years, and then passed away. She seemed really magnetic. I can't even remember how I found her page, and she was so pretty too. She had a boyfriend, a dog, a family. She worked. One of her nurses wrote a compelling little page about her on the facebook group. It spoke of her personality and positivity and charm. The point is, the nurse was given a change of perspective on lung transplant, and what it means regardless of how much extra time you get from it. I encourage you to read the story here: http://www.facebook.com/home.php?#!/topic.php?uid=2339377729&topic=2470

Now, I'm determined to live like her. However, there are certain aspects of life where it's a lot harder than simply "worrying wastes time, go enjoy yourself today". Certain things require planning. Certain things have a big impact on other people, and if I'm not there to clean up a mess I might make by initiating a big decision or project, I'm hesitant to start it. Lately this has been my thought process around: 1.) having a child, 2.) making a goal of someday getting out of this basement apartment of the house we share with my sisterinlaw and her son. Both of these things, had I not had CF (or even if I had 20% more lung function) would be hardcore dreams of mine and I wouldn't settle for anything less than accomplishing them. But here I sit, worrying about how those battles (because they would both be something that required a huge amount of fighting for) would work out if we encountered any bumps along the way (or worse). How would my support system deal with it? I realize that this is stuff I should be talking about with my loved ones, and I have. I just feel like I ask the questions with urgency.. like 'ok well if its a good idea, lets start now!!" and the responses are more vague, and seem like we are waiting for something miraculous to change.

I guess I just want to figure out what I can aim at in life (even if its something that would take 10 years), what I should fight for, and what's worth my energy without risking my health. I'm so used to moving forward, and I long for it again.

Clinic results

My lung function at clinic yesterday looked more like what I would've expected to see last week when I felt rough. 0.78 litres. My all-time low. I've had it once before. Last time I had a fever and looked like death. This time, I look fine and feel pretty peak (or what has become peak). Weight-exact same, O2 sats-better. FVC-better. FV-what? I found it odd that while not seeming terribly worried about my drop in lung function,my doctor quoted a number I was previously told basically to ignore. I still want to know more about that value, but will have to wait to grill them at next clinic (which has been slated for my typical month interval).

I wanted to share what I was given after asking about the cyclic issues I have with shortness of breath. Besides things like doubling my pulmocort and pulmozyme during the most difficult time of the month, my doctor suggested the birth control pill. Apparently it smooths out the peaks and valleys of hormone changes and therefore can ease some of these symptoms for CF'ers (and asthmatics apparently). She said that it has mixed results with people. Either they notice it helps alot, or they don't. So I'm probably going to give it a shot soon, once I sort out how to get back up a few ml to a less scary FEV1. Useful information I think.

I was also told my transplant assessment may take a little longer than expected to get moving because several more urgent patients have materialized all of a sudden, and the docs feel I can wait. I would've agreed until this clinic.

That's really it for now. Ive been trying to stay busy today to both move my body and help that lung function, and because I feel relatively well so I want to make use of it!

If I were a boy

Suprise suprise... my short of breath symptoms relate most likely to.... *drumroll* Pre-menstrual symptoms!

The worst of it disappeared mysteriously this morning and I instantly knew what was going on. Technically, I guess this is cause to celebrate. No big disaster of an infection, and most likely minimal damage. I SO wish I was a guy sometimes. CF men have it made. Beyond the whole bloating/draining cycle that interferes with breathing, they have easier chest physio access, a non-sexual zone to operate on during transplant (and deal with afterward), no loss-of-procreation-abilities due to worsening lung function (granted: they DO face this fact, just not so progressively and unexpectedly), and apparently they live longer!

I wouldn't be suprised if hormones were the reason behind that last statistic. Ever since my lung function has crossed some sort of 30% Fev1 zone, this cycle of monthly sick lungs feels like it has the potential to make things even worse at any given time. Shortness of breath and loss of energy lead to not being able to move my mucus and that leads to potential infections and inflammation that can permanently damage the old airbags even more.

It's like 3 weeks of the month, CF is a guy (or girl, I suppose) running across the road. Always in danger, but if he takes the proper precautions like looking both ways (AKA physio, exercise, etc) he'll probably make it this time. During week 4, that guy gets a blindfold. Or better yet, if someone around me is sick, the guy is blindfolded and has 10 beers in him! He doesn't stand a chance!

I used to wish I could have good lungs again for a day, just to remember what it was like. In the interest of not depressing myself I'll settle for feeling what it would be like to be a guy with CF for one day. Sure, I'd be the shortest, skinniest little weiny of a guy, but whats vanity when you've got an extra couple of years? Hmm... maybe I DO like my female self.

S.O.B is a SOB

Does anyone really read blogs in the beautiful spring weather? I can't imagine what normal people do.. If it wasn't for lack of energy, shortness of breath with pretty much any exercise and even sitting down now sometimes (scares the crap out of me), not being at work and therefore having 8+ extra hours than average joe, I don't know if I would. Even as a healthy CF'er I still had mask and treatment time to entertain, so of course I'd have time to read blogs, had there been any back in the day.

I will continue to write mine, of course. Readers or no readers I love this outlet for my CF woes. Its sort of like doing chest physio, with the purpose being: If I can concentrate all of my thoughts and feelings about CF into one small part of my day (like coughing), I have several hours relatively thought/pain/cough free. So, please forgive the sometimes whiney words as they are my therapy.

Lately I've felt blah. Not uber sick per say, but it all started with a solitary sore throat issue. No other symptoms, just a sore, froggy throat that lasted. Then Eva passed. Then two of my grandparents were dealing with repetitive and serious health issues (still are). Then it got nice out and I wanted to run and jump through the world without restraint. I think these have all come together to make me really bummed about CF. I get this every so often. When it feels like the suffering is too much to handle and I want a way out. I wake up at my usual 5 hour interval in the night coughing and it feels harder than usual and I want to cry. I'm not sure (but suspicious) that it necessarily always equates to an actual worsening of my health, but I'm getting to clinic to be sure.

Technically I should be at clinic about now anyways, but I was hoping the transplant hospital would make their now-overdue call to me before I booked regular clinic so I could be strategic with my trips. I suppose I might as well get used to the constant travelling there. *grumbles unintelligably*

So here I sit, with my oxygen on to combat some SOB symptoms, planning some extra physio and exercise, and dreaming of my active days ahead, particularly at the driving range with my hubby.