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.

So many ends in this beginning...

April is my favourite month. Full of beginnings of spring, everything beautiful ahead. As time passes I've learned to appreciate fall for its similarity to spring despite its more dismal direction into winter. April, however, will always be my favourite because of my 4 university years when school wrapped up so nicely in the same month that the weather got so enjoyable. I loved studying outside during that time.

Just as I've been enjoying spring's arrival this year, all my beloved blogs have ended. Well not all, but definetly some of my faves. I like the idea of my friends ending their blogs as the "story" they meant to tell comes to a natural close (http://natandmarty.blogspot.com) . Moving forward in growth makes sense and is beautiful, though I'll miss the joy it brings to my day to check how my friends are doing.

Timing so had it, that another of my favourite blogs ended today for a different reason. Eva Markvoort of http://65redroses.blogspot.com passed away after her long battle with Cystic Fibrosis, and most recently, chronic organ rejection. We all hoped for a different ending. It seemed excessively unfair that she should get an extra 6 weeks of unexpected hope for nothing. With her unfailing love for life and people, however, I know in my heart that 'nothing' is far from what those 6 weeks meant to her and her family. I think a part of me wanted to see her receive her miracle to add hope to my own expected future. I feel selfish saying it aloud, but its the truth. I wish none of us had to suffer the way we do. Breathe easy, Eva, I will go back and read your blog for inspiration throughout my journey.

Love love love...

Niagara Falls

Two weeks feels too long to be away from the blog, and yet, its never good to force it on account of feelings of obligation. My husband had the past week off, so we've spent some time away, as well as I've had less time "to kill". I'll never learn my lesson though it seems. Away means less hunching over my computer, and therefore less back and neck pain. It means more exercise (including hotel swimming! =) ), and therefore more coughing and feeling healthier (if only so very very slightly). I was only officially gone for 2 and a half days, and yet, a virtual search party broke out on facebook when I didn't respond to my private messages. Not something to be proud of, though the caring felt good.

On the upside, I was actually more adherent to taking care of myself while away than when I'm here. Usually its physio that slips while away, but this time, not only did I do it, but I did it MORE. Perhaps because I got freaked out how hard it seemed walking any further than 50 feet on flat ground.. perhaps.. No matter what positive thoughts these sort of experiences bring, I can't help but taste the bitterness of resentment as well during these moments. The injustice that any other 27 year old, or 45 year old for that matter, can sit on the couch for weeks and still be able to go out and walk and jog with relative ease, not losing so much of their functionality. Poisonous thoughts... sigh.. well back to business I guess. Below, a picture of our hotel room.

Sleepy

I've been really lethargic lately, and haven't felt much like blogging.. I presume because of Cipro 750mg and its side effects? hopefully?... and, as I considered today, perhaps that I'm not drinking enough to go along with such a drug (because I tend to be most tired in the first few hours of being awake.. when I tend to not drink like.. at all *blush*). I have clinic tomorrow again, so we'll see how that goes.

In the meantime, you may remember one of my first blog posts about wanting to make kleenex box couches to raise money for CF/surrogacy. Well, my mom and I had a surge of making tons of them but haven't made any for quite some time now. My mom sent one to Eva Markvoort recently (65redroses.livejournal.com) along with a letter from her and my dad. They also noticed it in the pics on her blog yesterday! Thanks Eva! It made us feel really good that you like it and reminds me (once again) to fight as hard as you do everyday, keep my head up, and LOVE LOVE LOVE.

Thank goodness for Risk-takers

I had a satisfying clinic yesterday. So satisfying, in fact, that I was there until 6:15 (just kidding---I wasn't there so long for THAT reason.. *grumble*) and not home until 8.

But seriously, I do love when clinic provides me with a new way of looking at things, a new hope for my health, or anything beyond the monotonous repeating of symptoms and drugs.

Yesterday I went in knowing I wanted some antibiotics. I don't feel sick, but I have had more shortness of breath, and thicker sputum and its been 4 months since I was on any antibiotics. It's time.

The cool thing was, apparently I grew pseudomonas for the first time since July 2008 last clinic. I like to think that its the reason for my symptoms. I also think its really cool that I didn't grow it for basically 2 years after my one and only month-long admission. You gotta celebrate the little things.

So anyways I'm on cipro now and we'll see how that goes. My pfts were stable (though "stable" at my since-summer-low of .83 litres and 27%) and my weight was up, so I'm not even sure what I can reasonably expect, but I love the hope.

The final thing I wanted to mention, was this clinic's transplant talk from Dr.T. I spoke with a different doctor last clinic, so it was great to have both of their speeches under my belt. Dr.T echoed what Dr.S felt about me needing to be assessed for safety/insurance reasons especially. I didn't need much convincing. The month I requested to "swallow" this information has helped tons for myself and my family and I was ready for my referral to go through.

Dr.T rambled on about tx, and happened to bring up a woman (I swear I didn't lead her here at ALL) who has gone against advice and became pregnant after transplant...twice. She has done fine so far and Dr.T brought up how much people like that tweak professional perspective and sometimes make what was deemed accurate warning to be a little "harsh" (her word). I used this opportunity to ask her if she thought I would be able to do egg retrieval post transplant, something I've been thinking about. In her opinion, it poses no problem, which warmed my heart with hope. I got thinking about the pregnant woman. I would never make that kind of choice for myself, but I realized that because of how new transplant really is for CF, how grateful I am to people who want to take such risks. They are why we learn. I got thinking about another risk-taking tx'er.. who is currently dating a pre-tx Cf patient I know. I find their situation mind-boggling.. but again, the opportunity for learning is there. I love it and I thank them.

This is my week-before-clinic face

I know.. Exercise is important all the time.. but with the help of upcoming clinic, unpurchased new wii batteries, and some American Idol on tv, its been much easier to do the more-exhausting exercise bike lately. And I'll take it.