The Art of Busy

I am making an art out of being busy - that is, I juggle a million things with ease and manage to arrange them into one beautiful design, all with the grace of a dancer. Sort of.

What I really mean is that I have been trying to get a tremendous amount done while also being mindful of my health and energy levels first throughout the day. It's quite a shift for me from go-go-go.

I have been consumed the last two weeks with both our bathroom renovation (choosing, ordering, trips to hardware stores...) and starting the process of applying for long-term disability through work (paperwork, paperwork, paperwork!) Not to mention all of my regular stuff (pulmonary rehab on Tuesday and Thursday, acupuncture on Wednesday, getting my allergy shots 40 minutes from home, arranging oxygen delivery, renewing prescriptions, other appointments, a hockey game and time with friends here and there...) 

Oh, and I am also starting to plan a bachelorette party (I am the maid of honor after all!), trying to get my handicap tag from the DMV (urgh!), revisiting my physical therapist from pre-surgery to get my back pain under control (it's getting better) and making preparations to meet with a lawyer who is going to do our wills. WHEW!

And I am doing all of this while contemplating two of the biggest questions I will ever have to answer in my life: Is it time to stop working? and, do I want to pursue transplant? And the hundreds of sub-questions that go along with both of those.

But, I am pacing myself. Thanks to not drinking, my head is in the best possible place to make these hard decisions and tackle all of this stuff. And since I started ginseng/acupuncture I have had more energy which is awesome.

All and all things are going pretty well. My back pain is getting better thanks to PT, restarting my stretching and acupuncture. Pulmonary rehab is going awesome - I absolutely rock the place every time I go. I am needing a little less oxygen to get around - more for exercise than simple exertion. My PFTs...still bouncing up and down and pretty much the same as they have been.

But I would be lying if I said I thought it was possible for me to recover in a way that I have recovered from infection/exacerbation before. I am clearly in a new stage of my disease - I feel it, my numbers show it, people who know the most about me can see it. I might even call it "the coughing fit stage" because I have never had as violent of coughing attacks as I have in the past weeks. (By the way, for those who think I "look great!" Thanks for the compliment, but please remember that CF is an invisible disease.)

My lungs are decaying and there is no question: we are on the road to transplant. If I have my way, the road will be long and windy. I would love to go on disability and live for 10 more years before needing a transplant! If anyone can do that, I can.

So anyway, please wish me luck in this process of applying for long-term disability. From what I have read, I need to suit up in a coat of arms. I am NOT looking forward to defending myself for deserving this. That is incredibly hard when I have already needed so much external help to realize this is what I probably need to do, what is best for my health.

When it's all over, a huge celebration will be in order - maybe even including a Blue Moon or two. :)

p.s. I should say that I have not 100% decided about going on long-term disability right now. But my HR person has advised me to start the process to find out if I qualify. It will be good to know even if I don't end up needing it now. But lord the paperwork!

Surviving the Holidays on IVs

My oldest friend Erica and I at my Birthday Bowling party

Well, I survived the holidays on IVs - and oxygen, I should add, since that was a big new adjustment for me.

My birthday bowling party was a ton of fun! Had a great time with friends. It was also kind of like a "coming out" party for me with the oxygen. And it went rather well I think. Obviously my friends are pretty awesome so that helped. :)

We really wanted to make it up to the mountains but that didn't end up happening. Between my bi-weekly labs and medicine delivery schedule it just wasn't possible. Plus, it was probably best for me to hang around here anyway and to enjoy mountain time when I'm feeling a bit better (in other words, when I'm needing less oxygen.)

Christmas Time is Here 

As anyone knows who has ever heard the song "Christmas Time is Here" from A Charlie Brown Christmas, there is both a sweetness and a sadness about the holidays. When we're young, Christmas is pure joy. But as we get older and start to value family time over presents, we can't help but be reminded of people we've lost, those who are no longer here to celebrate with us.

And there was plenty to be sad about this holiday...  It was our second Christmas without Todd's dad, who always made a huge deal about getting presents for all of the grand-dogs and having a big Christmas morning with them. Todd's cousin who has been battling (I hate using that word) stage 4 cancer for several years almost died a few days before Christmas. My health is clearly not doing well. One of our good friends is moving out of the country.

BUT, lucky for us we have all of that to balance with having an amazing group of friends, a supportive family, nieces and nephews to spoil and whose holiday excitement can't help but be contagious, our furry children who provide endless entertainment and (cheesy alert) each other.

Sam, taking a breather after opening Christmas gifts

Speaking of amazing things, some news about my job

I told you about how I unapologetically (for the first time ever?) took these three weeks on IVs completely off of work - three weeks which, incidentally, ends today! (More on that in a sec.) And the crazy thing is, I actually stuck to it. I haven't worked, and I haven't felt guilty about not working.

But, at the encouragement of my boss, Todd and pretty much everyone around me, I have decided to go on short-term disability for a while longer to extend the time that I have to recuperate and hopefully get my lungs in better shape with pulmonary rehab, etc. I am not quite sure what this "focusing on my health" time will look like, but I will definitely keep you all posted.

Lastly, an update on my health

Last, but never least, here is an update after 3 weeks on IV antibiotics:

• I am feeling pretty good, but I caught a cold on Christmas Eve that has hampered my improvement and has made the IVs less successful overall than I hoped.
• My lung functions have come up a tiny bit though! I am at least consistently over the 1 liter mark.
• My kidneys did great with the Tobra, my port is working fine after a period of suspecting a partial clot, and all of my blood draws went very well thanks to my amazing nurse who can do some serious acrobatics with a butterfly needle.
• I had my first 2-hour session of pulmonary rehab yesterday. It went really well! I think it's a good sign when they have to tell you to slow down. :) It's going to be really hard, but I am up for the challenge.
• One question mark hanging out there is how my back is going to deal with this increased activity from pulmonary rehab. It has been bothering me a little - some of that is good because I know I need strengthening - but I hope it doesn't become a problem. I have had to take Tramadol for the first time in a few weeks.