My Two Favorite Dorks

My Two Favorite Dorks

Thursday, December 19, 2013

The "D" Word

I went in to see Dr Coakley on Dec 13 after two weeks of progressively worse coughing, congestion and shortness of breath. My PFTs were the lowest they've ever been, even with my increased Prednisone. Can't say I was surprised. BUT, somehow I think the sadness/grieving/anger I'd been going through in the weeks previous helped prepare me for that appointment. Instead of being a wreck afterward, I was matter-of-fact, pensive and a little melancholy.

I am back on oxygen for anything more than just piddling around the house, and also at night. I am starting pulmonary rehab two days a week to strengthen and improve my breathing. I am taking an unofficial leave from work to get my health back under control. My port is acting up - ugh, one more thing.

Which brings me to the dreaded "D" word. During my pulmonary appt last week, my doctor mentioned contacting Duke for some preliminary questions about my case as a potential transplant patient. So - if I had never brought up transplant with my doctor, this may have been when he would have first  brought it up with me. He doesn't think I am ready for a work-up yet, but he wants to make sure all of our ducks are in a row with getting me over to Duke if/when needed. And we need to be ready because my numbers keep falling with no explanation other than disease progression.

In happy news, things seem to be going well so far on the IVs, which I am incredibly thankful for. And I have to say that for all the bumps in the road of late, I am not letting it ruin what is always a very special time of year for me with my birthday (20th) and then Christmas. We have our tree up and decorated. I am having a birthday bowling party tomorrow with 20 of my closest friends. And I still hope we can make it to the mountains at least for a few days next week - that is if my port, blood draws and IV delivery schedules will cooperate.

Happy Holidays Everyone!!

p.s. If you would like to make a difference in the life of someone with CF this holiday season, please consider donating to the Cystic Dreams Fund, which was founded in memory of my good friend Paul Mooney. CDF gives grants to people with CF dealing with financial hardship, which can be anything from medications, respiratory equipment, nutritional supplements, hospital bills and more. Thank you for considering!

Saturday, December 7, 2013

Belize and Beyond

It's a cold, rainy day - perfect for catching up on my blog.

Sunset over the swimming pool
We made it to Belize! Hard to believe that was already almost a month ago. Belize is beautiful and we had a good time. Unfortunately, the weather was very rainy (yeah, I know it's a rain forest!) and I got a little stir crazy. But it was probably what I needed to have lots of time to lay around sleeping and reading.

We had absolutely amazing food - fresh fish and seafood every night, lobster!! - drank lots of Belikin and rum drinks. Todd went fishing. We had one amazing day of snorkeling where we saw sea turtles, tons of fish, beautiful coral and swam with the (harmless) nurse sharks. The resort was very nice, the staff were all super friendly and the rest of the company there was enjoyable.

Backing up just a little bit...

Had a pulmonary check-up/re-check from IVs three days before we left for Belize. It was an incredibly intense appointment. After three weeks of going into the hospital for Colistin and all the crazy side effects, switching meds around and exercising my numbers were still crap: 34% FEV1 at 34 years old is NOT where I want to be. I think that was even a little lower than before I went on IVs. Ugh.

When Dr. Coakley walked into the room, I was crying, so disheartened by the numbers and feeling so frustrated and hopeless. Todd was with me. The three of us talked for a long time. In true Coakley fashion, we went through what we had done and concluded we had taken the best steps. Did we get the results we wanted? Absolutely not. But had we done the right things? Absolutely.

And as much as transplant and declining health feel like they are creeping up on me, he assured us that we aren't there yet. And, like always with this disease, you just have to keep trying things to find something that will work. Things are just getting trickier, but that is no reason to dispair.

We both walked out feeling extremely positive and, if it was even possible, even more impressed with Doctor Coakley than ever before. I love this man!!!

The Best Thanksgiving Ever

Chef Jay carves his masterpiece
I have usually gone to Cleveland for Thanksgiving in recent years. And I usually drive. The only way I could make it happen this year (with my aging car and not wanting to take extra time off work) was to fly up on Wednesday and come back on Saturday. The visit was short but sweet.

Child labor: the girls haul my backpack up two flights of stairs to my room in the attic
I seriously had one of the best Thanksgivings ever. My step-sister and three nieces (age 9 and 7-year-old twins) came to pick me up from the airport. "Hi Aunt Laura!" They were so cute and excited to see me. By the end of the day they were crawling all over me and sitting in my lap, and of course trying to recruit me to play the game of the hour. So sweet. They crack me up.

Then there was SIMON, my brother's 2-year old. My brother, his wife and Simon arrived Wednesday as well. We all met up at my dad's house before dispersing for the evening. Simon is amazing. It is no surprise that both his parents are professors. He is so smart and talks and talks what seems way above what normal kids his age would. He has the biggest most beautiful blue eyes. And he is so careful and gentle with things, and very polite and well behaved. Love love love!

So what made this the most amazing Thanksgiving ever? For one my dad was doing pretty well health wise, better than when we saw him this summer. That was awesome. Secondly, I got some one-on-one time with almost everyone, and lots of niece and nephew time. Thirdly, the food (compliments of my step-brother, the amazing cook Jason) was absolutely phenomenal. To top it all off, we had the prettiest snow, falling in big flakes, covering things just enough to be perfectly picturesque. Enough to make this ex-northerner a little sentimental.

Amazing Annual December Soap Event

We again participated in the Raleigh LGBT Center's First Friday event last night. It had been a while since we did a soap display so we were kind of scrambling around a lot this past week. Our soap looked so so good. I think I was most proud of this display than any other one we've done. There were no bars that looked amateur. We rocked it!

Wintergreen tree, lemongrass scrub, cinnamon clove gingerbread man, lavender star

That All Sounds Great, But How Am I Really Doing?

So glad you asked! As you have read, I have a lot of awesome things going on in my life and am surrounded by amazing friends, family, pets, doctors...what more could I want?

Well, I want to be able to sweep my house, walk up stairs and carry groceries to the car without getting short of breath. Getting out of breath sucks, it really does. It has made exercise so much more difficult for me; I've had a very hard time motivating myself to do it. I know I need it more than ever, if I am going to recover my numbers that is how it will happen. But I can't seem to get over the hump.

I have been working on acceptance. I need to accept where my lungs are at, adjust my life to work with how they are, and realize that I am going to have to let some things go. It sucks but I am not the only one to ever have to go through this. But while I am trying to accept things, my sadness and frustration is still very much alive below the surface...I've been having a very hard time with my new position in life.

I have more outwardly becoming a "sick person." It is harder for me to control my coughing during the day, at places like work, I'm congested, my voice sounds like I'm sick but I'm not, my shortness of breath (walk too quickly and also talk? not anymore). I know I've talked before about handling health decline with grace, but damn this shit is hard.