Atlanta and Recovery

Art along the Beltline in Atlanta

I am long overdue for a post. Apologies to those who have been patiently waiting!

The last couple of weeks have been both routine (my new routine) and exceptional. I have gone to pulmonary rehab twice a week and have been taking care of business at home, continuing to keep up and get organized. Starting to think about our trip to Vegas at the end of April for our friends' wedding. (More on that as the time grows nearer.) And on the other side, I had a trip out of town and then my Nissen (stomach wrap) surgery.

Atlanta

My friend Erica, who recently moved to Atlanta,
and her awesome dog Berkley

Last weekend, I went to visit my good friend Erica in Atlanta. The drive was about 6 hours, longer than I would have liked, but it also gave me a lot of time to catch up on Podcasts (I finished "Serial" for those of you who know what I'm talking about, and I'm just as uncertain about who did it as I was after the first episode! Very curious what Serial #2 will be like.)

The visit was good. I got to spend a lot of quality time with Erica, who, new to Atlanta, is having a bit of a rough time adjusting to not having good friends around. We also got to explore a bit and sample some of Atlanta's neighborhood culture. (Think NYC with its 5 boroughs times three and squished down to fit into a much smaller city. Each neighborhood has its own heartbeat.)

On Saturday, after I arrived and had a nice cup of coffee out on the deck while my friend's housemate's chickens clucked around the outside of the house, we went to an awesome craft show (had to force myself not to buy a bunch of amazing bars of soap), walked around Little Five Points and then had dinner at a restaurant on the Beltline (a paved path that runs through several neighborhoods for jogging, biking, running, etc.).

On Sunday, after a quick detour to Marshall's, we went to this place called the Buford Highway Farmer's Market. I was thinking it was going to be a huge farmer's market but it was actually a gigantic multi-ethnic grocery store with about 20 check out lines bustling with every color of person.

Their selection was amazing, 50 different kinds of saki, rice by the 20-plus pound bag, every kind of frozen dumpling you could imagine, unidentifiable produce. Each isle was designated to a certain type of ethnic food - Chinese, Japanese, Korean, etc. - and the entire back wall of the store was a huge fish and meat counter area with every kind of fish and cut of meat imaginable (and including disgusting things like chicken feet and octopus.) We ended up getting some Sea Bass and, as an experiment, a piece of shark.

Chicken feet!

Every kind of rice vinegar you could ever want or imagine!

After the Farmer's Market we went to a Szechuan Chinese restaurant nearby called Gu's Bistro that my friend had heard about as having the best Chinese food (specifically dumplings) in the city. We split an order of each of their two kinds of dumplings and they were indeed spicy and delicious!

After that we took my friend's dog Berkley, who I love so much, for a long walk along the Beltline. It was a beautiful day out, about 50 and sunny, and there were tons of people out on their bikes, skateboards, roller blades, and walking and running. We probably walked over three miles. It was a lot for me. Then after a quick coffee break, we headed home and Erica with her Saki (and me with my NA beer) soon started cooking dinner. We had roasted curry cauliflower, the sea bass with a great fish rub and the shark...and let's just say the shark experiment ended up well for the two dogs. :)

After all of that it was an early night to bed for me. The next morning I got up and drove back to Raleigh. What a great time! And I didn't forget to take my pills one single time (this trip out of town was kind of the first experiment as to whether or not I could mix a fun weekend with remembering to take my pills and flush my stupid G/J tube - success!)

Surgery

My surgery was actually done with a robot - crazy, huh? -
that's quite a contrast to this picture!

The week after Atlanta was all about preparing for my surgery on Thursday. Things to do, special food to buy, exercise to get in. I prepared mentally by not thinking about it at all which does wonders for your nerves!

The morning of surgery I had to be at Duke at the ungodly hour of 5:20 am. Everything went fine. I got a full stomach wrap and while they were in there they also dilated the stomach opening to my small intestine to improve my stomach emptying.

My belly scars: 4 from chest tubes, 6 from Nissen surgery,
and one from my G/J feeding tube

Here were the things that were awesome about the surgery:

• I was really happy with how the anesthesia ended up this time - I told them less is more with me and the message clearly got through. I can remember things very soon after coming into the recovery area. This is in sharp contrast to the last procedure I had anesthesia, for my G/J stomach tube placement.
• I was able to burp after surgery! That may seem silly but a lot of people can't burp and end up with bloating from air build-up in their stomach.
• I was able to swallow pills after surgery - a lot of people have to crush big pills because they can't swallow them. 
• I did NOT have a lot of the nausea/vomiting/dry heaving that a lot of people have after this surgery.
• And the best thing was that I only had to stay in the hospital for one night! They gave me the option of staying another night but all they could offer me there that I couldn't get at home was IV anti-nausea medicine and I wasn't really having any nausea. So I figured if I could be in pain at the hospital I could be in pain at home and have the comforts of kitty cats and, well, home.

However, pain management - which hadn't been great at the hospital even with IV Dilaudid - was a huge issue as soon as I got home. The first day and night home after surgery ended up being extremely unpleasant - it hurt to do almost anything, even breath. All I could do that didn't hurt was lie in bed and sleep. The next morning I paged the on-call doctor and he changed me to a winning cocktail: He upped and increased the dosage of my pain meds and added in Tylenol and Advil intermittently (yes, I know Advil is a no-no after transplant but he said just one pill would be alright in this case.) I was much less miserable after that and was able to get up and do things, get food, catch up on Project Runway, etc.

So anyway, I am in recovery mode, and now that my pain is controlled I am already getting a little antsy - I have absolutely nothing planned for the next week or two which makes me sort of nuts - I'm even off from pulmonary rehab until I'm feeling strong. On the positive side, I have a lot of stuff to read right now (my travel books for our April trip and a book on social media for my new volunteer position - more on that in another post) to fill my time and maybe I will start watching a new show and catch up on old ones or something.

Also, I have found great ways of overcoming the dullness of my liquid diet - added herbs to chicken broth, fixing cream of wheat and eating rainbow sherbert. I am only on it until tomorrow and then I can start having soft foods - it is shades of my swallowing test days all over again. This time, however, I'm going to try not to cheat so much. :)

- L

The New Normal

There are many steps in recovering from a major surgery: the number of things you are hooked up to decreases, you get released from the hospital, slowly get strength back that was lost while sitting around in a hospital bed.

Also, in my case, there's been the small steps toward being able to eat normally again (still working on that), getting various tubes/stitches/staples removed (everything is gone except for my feeding tube) and completing 23 grueling sessions of pulmonary rehab in order to graduate - which I did the week before Christmas - yay!

Along the way, little slices of normal life start to insert themselves into the medical routine and they are oh so very welcome. Going out to dinner or a movie? Awesome! Putting up the Christmas tree? Hell yeah! A trip out shopping instead of buying on Amazon? What fun! (All of course done with my mask discretely in my pocket book ready to be deployed if need be.)

Are We There Yet?

Recently I have had some people ask me if things were getting back to normal. The answer to that is not straight forward. 'Normal' to me before surgery was days of fatigue, doing treatments and dragging myself to rehab. Rewind to a little over a year ago before I had to stop working and life consisted of mornings of drinking coffee and reading the paper while doing my therapy, going into work, coming home to do therapy and exercise, cooking dinner, watching some TV with Todd, doing my final treatment and going to bed. 

So what will life look like with no treatments and only having to remember my medication times throughout the day? (I am still getting used to that.) The answer is I have no idea and the possibilities are incredibly exciting to me!!

I would like to go back to mornings of reading the paper and drinking coffee before doing some kind of work (what that will look like, whether actually going into an office as a paid job, doing some freelance writing, volunteering somewhere or doing something else at home.)

Exercise will continue to be a big part of my life - I want to get back to being able to go on bike rides with Todd and go to yoga classes!! I might even finally be able to complete yoga teacher training like I had wanted to (not to teach but just to get deeper into the practice.)

I want to have an active social life again, going out with friends - I miss that! (Although I will have to continue to adapt to a basically alcohol-free lifestyle, regrettably.) I want to be able to go on trips out of town on the weekend at a moment's notice. I miss our mountain house so much I can't even tell you! And I miss going down to Todd's aunt's beach house at Holden Beach - it is so beautiful down there.

Speaking of Getting Away

Speaking of getting away, before any of that happens I want to plan a couple of trips. I want to go to Atlanta for a weekend to see my good friend who's moved down there. And I want to go to Cleveland to see my dad/step-mom and family - and hopefully my brother can also drive down from Michigan so I can see his family too (nephew Simon!!)

Todd and I are also starting to plan summer vacations. We have a friend's wedding in Vegas in April. We want to go to Montana sometime. And we are starting to think longer out (next year) about a trip to Belize or some place like that on one of Todd's brother's fishing trips. (That would require a lot of planning and preparation from an infectious disease standpoint but the docs have said that with enough advanced time it should be fine.) We also have good friends in Ireland that we would love to visit. So much to do!

So what am I waiting for? That's easy - two things: I'm waiting for my rejection (discovered during my bronch a month ago and subsequently treated with a large blast of steroids) to clear and for my Nissen stomach wrap surgery to be done. For the rejection, I had a follow-up bronch on Monday and I am awaiting the results. If I remember I will update this with them. If I am clear, plans will start being made! [Update: I am still showing mild rejection, although less than last time - this makes sense because my Prograf (my main anti-rejection medication) levels have still been low. My treatment will again be I the steroid treatment. This is also good, in my opinion, because it means they didn't think an escalated type of treatment was necessary.]

For the Nissen, I am supposed to get a consult with the surgeon soon and I am hoping that surgery will follow fairly quickly. The recovery from the Nissen seems to vary a lot between patients. Although the surgery is done laparoscopically, I am hoping that the pain will be lessened by the fact that my chest is still numb from the belly button up to my collar bone.

Anyway, that's the deal with me right now. I am awaiting the endless possibilities of what my new normal could be.

Oh, and I almost forgot: Happy New Year y'all!

 

Photo Credit: Egg @ doctor, www.andertoons.com; Amazon boxes, www.techlicious.com; Yoga hands, www.yogavibetenerife.com; Belize, www.belizethisway.com.

A Rough Time

This is not going to be a happy blog post. Last week was a very bad week.

I had not been doing well mentally going into it - having a hard time with all of the new changes in my life (not working and getting sicker.) Then Todd left for a week, my Aunt died, I was hosting a bachelorette party at the end of the week three plus hours away. Then I came down with some kind of body ache/fevery virus for two days (less than a week after coming off IVs) during which I felt absolutely miserable. To top it all off, my blood sugars were running in the 300-400s because of problems with my pump. It was one of the lowest times in my life.

But, I trudged forward. I don't mean this in an 'aren't I amazing' kind of way but rather a 'I was so lost and downtrodden that I had no idea what else to do other than attempt to put one foot in front of the other' way.

Fortunately, my fevers broke, I started feeling better, I upped my antidepressants, I got tested and was once again negative for the flu, I said to hell with my pump and switched back to shots ... and I made it to the mountains for the weekend, which was a great success and a lot of fun.

But the best part, honestly, was coming home from the mountains to Todd. Problems don't get solved or go away when you can talk to someone you love and trust so much, but they do become something that seems somehow more manageable. Plus, you know how sometimes being able to say something out loud makes it less scary? I felt like that, too.

My moment of truth

My breathing has not been great. And I knew it was going to be even more of a challenge with the altitude of the mountains. It makes a BIG difference. I was running my oxygen basically at full blast up there (5 liters) and still not able to do a whole lot without de-satting. I took a shower and my sats went down to 80 - that's the lowest I've ever seen them at. I really had to go slow and pace myself - I felt the life of a very sick person had suddenly been thrust upon me.

When I was driving home, it hit me: my lungs are failing. They are getting worse and worse, a little at a time. I'm not trying to be negative, it's just something I feel. And the worse my lungs are, the bigger the small changes feel.

I'm scared. I'm not ready to die - who ever is. And it struck me that my brain could be so alive and yet my lungs on their way out...but I guess that is how a body works. It goes until the weakest part fails and then the rest is forced to follow suit. As intellectually puzzling as it feels, it is the way of the world.

So two things are happening. I am trying to reassure my ego with my zen self that this whole process is okay...I don't want to waste any more time or energy - precious energy! - than necessary fighting the inevitable. On the other hand, I want to continue to be the realistic, proactive patient that I am and get to Duke for transplant work-up before it's too late.

This week ends three months of my short-term disability. I can't express how frustrated I am with where I am at, with my lack of improvement. But at the end of the day I know that I have done everything I could have done that I am willing to do to get here. So I am okay with it.

Until later -

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.

Getting Ready

 

It has been a week of getting ready...getting ready for our trip, getting my lungs in shape for a vacation, getting everything set that we are leaving behind (pets and house.) We are now two days away and things are in pretty good shape.

I was reflecting today on what a journey this has been. Back in April, when my surgery got postponed because my lungs were not doing well, I was afraid the trip might be jeopardized.

By the time of my rescheduled surgery, my lung functions were some of the highest they have been in the past three years. Surgery was flawless. Preventative IVs for it were a pain, but things went so well that I stopped them only 10 days after surgery instead of 2-3 weeks like I might have. Yay trip!

It was between that time of stopping IVs and still being on a lot of exercise restriction that my lungs started acting up again. When I was able to do pulmonary function tests about a month after surgery, my numbers were one of the lowest they have been in about five years. (Cue the 'CF is a roller coaster' cliche.) I was getting short of breath with hardly any exertion, but otherwise I felt okay. How was I going to manage being out west with the higher elevation (which can be an issue for me even when healthy) and what about all of the hiking and bumming around we wanted to do outdoors? Not to mention running around with all of our nieces and nephews.

The last few weeks have been a cautiously optimistic "Yay trip!" My lung functions, which I have been tracking every day, have inched slowly upward, but have also kind of stagnated. I have been exercising at about the limit that my back will allow, I am still on a decently elevated Prednisone. In short, I'm doing pretty much all I can do - and I'm still not where I would like to be.

BUT, as we set out on our trip, saddled with duffel bags of medication, supplies, oxygen tanks and my less-than-ideal but stable health I am thinking, I did it. We're going on the trip. We're going on the trip! We're going on the trip!! 

That, I guess, is the point of everything. Life happens, you have to adjust. If you're are lucky, you can keep moving forward. And if you're really lucky, you can go on a 5,000-plus-mile road trip with your favorite person, see all kinds of amazing things and visit the people you love most in the world.

See ya on the flip side.

L

It helps having something to look forward to

In approximately three weeks, Todd and I are scheduled to leave for our excellent northern/western adventure driving to Cleveland, Michigan and Montana to visit family and vacation. We are planning to be gone for a total of three weeks, which makes it the longest vacation we will have ever had together!

Leading up to that, it has not been the easiest last couple of months with my back surgery and then getting a pretty severe lung exacerbation a couple of weeks after that. I have been on IV antibiotics for over two weeks now and while I have improved, I haven't improved tremendously.

I usually keep a fairly positive attitude about my health. But I have definitely struggled some the last couple of weeks. See, it is one thing to get sick, need time off work, have to go on IVs and have life disrupted for a couple of weeks. It is quite another to get sick, have your sats go so low and get short of breath just doing normal things, feel good enough to be working some but not be able to work enough to get everything done that you want to, feel like you are doing everything to get better only to see teeny tiny steps in the right direction. I guess what I'm describing is getting "CF sick" versus getting "super CF sick."

In my experience, getting super CF sick often involves oxygen, lots of antibiotics and a lot of time...as in months. Unfortunately, with this trip coming up, it's not the best time for my oxygen saturations to be running low (they are better than they were but still not really getting above the mid-90s consistently) since 1) being on vacation we like to do things like go out and hike, which requires exertion and 2) my sats run lower out west anyway because of the higher elevation.

I can make arrangements for oxygen, and we can probably figure out the antibiotic thing - if I still need to be on something, a combination of orals and inhaled would probably tie me over - but time is the tricky thing. I guess it wouldn't be the first time going on vacation when I wasn't feeling optimal. But I wish it was different.

All this is really to say that when I am sick - especially super CF sick - it helps having things like cool trips to look forward to. I feel fortunate that I have been able to do so much traveling because I know there will come a day when that is not possible. Sometimes I feel like Todd and I are foolish to plan so much. But what the hell. When you stop making plans, then what are you really waiting for?

February Update

In general, life is really really good right now. Work is going better than ever, my lung health has been excellent, I have finally gotten back to yoga! and we have been making a lot of trips up to the mountains.

On the flip side, my back/leg problem has once again become a daily pain maintenance issue for me. We have also been learning to live more frugally and I am trying to tackle what I consider to be some ongoing personal demons with a new therapist. That's it in a nutshell!

Work has been incredibly fulfilling, and very busy. I just had my mid-year review (and my 5-year anniversary, coincidentally!) and I feel more than ever now how my personal goals align with those of the departments I work for and the organization as a whole. I continue to do a lot of writing and web work (my passions) and I have a couple of projects in the works. Most importantly, I am creative, ingenuitive and able to use my web/writing talents at work and I am very appreciated by all of those around me. Oh, and we moved into a new office space which is an incredibly cool, hip environment to be working in on the American Tobacco Campus in Durham.

Pictures of the American Tobacco Campus - a renovated area of 1950s tobacco warehouses that were abandoned in the 1980s. The original buildings have all been renovated and a central courtyard area has a man-made river and a grassy area where concerts are put on during the summer. The Tobacco district is right across the street from the minor league baseball team the Durham Bulls. ATC's most famous resident (to me) is none other than Burts Bees!

The current story of my lungs has a couple of facets. I have been lucky enough to not catch any viruses lately. Because I was feeling good, I decided to start tapering my elevated dose of Prednisone a few months ago (I had been at 20 mg/day since August and my baseline is 10 mg/day.) Also, about 4-5 weeks ago I started keeping track of calories again to lose a few pounds and that has made me increase my exercising a lot (so that I can eat more than I otherwise could.) Because of my increased exercise and (an initial surprise to me) my lowering Prednisone dose, my back/leg again started giving me trouble. I guess I didn't realize how much the Prednisone had been helping my herniated disc issue.

I once thought my disc issue would get better, but I now know it is going to be something I have to live with forever.

In response to this, I am trying to do my PT exercises (or core work) every 2-3 days; icing; and I am back on a (relatively) lot of pain medicine (Alleve, Tramadol and the muscle relaxer Soma are all a part of my daily routine.) I am currently at 12.5 mg/day of Prednisone and, honestly, I don't see how I'm going to be able to get any lower than that. I might even have to go up - I will talk to my lung doctor next week when I see him about this trade-off I am experiencing.

After several months of "restorative," "yin" and "relaxing" yoga classes, I decided to try a normal yoga class in January. I was very careful and made a lot of modifications. Fortunately I have been doing yoga long enough that I can participate in a class without feeling the need to be competitive. (Yoga teachers always say "it isn't a competition - do what is best for your body!" but I don't care what anybody says, that is a hard lesson to learn.) Anyway, the regular yoga class was GREAT and I had absolutely NO adverse effects from it! I was thrilled, and since then I have been going to 1-2 classes per week. I am also starting to do a pilates class because that will give me core work (like my PT exercises) without having to do my same old exercises at home. Boring!!

Pilates, like yoga, is done on a mat. But the focus is on your core muscles, or the muscles that hold your spine in place.

On another topic, we cancelled our Europe trip that we were going to be going on with a group of friends in March. We have spent a LOT of money on dental work over the last year...we need a new fence...there are always unexpected things that come up...we need to get in a better place financially. I am happy to report that I have been very disciplined in only spending money on things that I need for the past several weeks. My tendency otherwise is not to run out and buy things just for fun, it is getting into this state of mind where I am always thinking, "what do we need right now?" or "what does the house need right now?" while I am out running errands. And then I end up thinking of things we don't necessarily need (now) or putting myself in situations where I find irresistible bargains...  So I am working on that.

I have also started seeing a new shrink. My old shrink just didn't challenge me! Also, he is close to my old office but not close at all to my new one. The new woman is in Raleigh, and sees patients on my day off, so I hope that she will work out.

Mountain house: I would be lying if I didn't say that in all the difficulty of being in and dealing with the mountain house (where Todd's dad lived, he passed away in August...) it also has been a lot of fun to clean, straighten and organize the house into a place of our own. We have been going up there about once a month. We both really like it. It is so enjoyable to be there.

Montana Trip

View from a typical country road in Montana

Fantastic trip out west. Probably did too much, which Todd and I are often guilty of, and didn't take enough time to relax enjoy each others company. But lots of fun and stories to tell. (The stories will have to come in person, this will just be a run-down of what we did.)

We (me, Todd, and our friend Gabriel) landed rockily into Bozeman, MT on Saturday Aug. 28. When we arrived at Todd's brother's house in Dillon, I could tell right away he had a cold and my heart sank. Sure enough, Todd came down with it in a couple of days, then Gabe, then finally me. That was probably the lowlight of our vacation.

Sawyer at Grasshopper Ridge

We got to spend a few days with our 2.5 year old nephew, Sawyer. That was awesome but man is it a lot of work. The three of us kept him one day and it took all of us pitching in. We did a little fishing, some nice mountain drives, saw a ghost town, and of course thoroughly explored all the favorite bars along the way.

On Wednesday, we headed for Yellowstone - it was Gabe's first time seeing it, which is always fun to experience. (My third time.) We were very conscious of the elevation issue (last time I got altitude sickness b/c we went straight to a very high spot in the park for the night.) I had my pulseox with me and was checking my oxygen constantly. The lowest parts out there are like being in the mountains here, so going into the mountains there can require adjustment. I wasn't too worried, though, because my fev1 is much higher than last time I was out there so I figured I would do better overall - and I did!

Upper part of Mammoth Hot Springs

We stayed the first night outside the park near the Mammoth Hot Spring entrance, about 5,000 feet. Took a short drive into the park that afternoon - saw elk in the middle of the village of Mammoth! and Mammoth itself is truly magnificent, one of my new favorite spots. We drove through some high mountain passes that first day which were kind of hairy for my oxygen - I was pretty uncomfortable a few times when it got down into the 80s - even the guys could feel the elevation, Todd with his then-inflamed sinuses. But back at the hotel it was fine again.

Next, we spend a day driving through Yellowstone's west side - we went to the Boiling River, where a hot spring comes out into a cold river and you can sit and enjoy the warmth intertwined with periods of cold, unmixed water. We saw some paint pots, which are like cauldrons of bubbling mud sitting in the ground. Then saw other geysers, hot springs, geologic wonders, finally making it to Old Faithful right before dark.

Artists paint pots - watch out - they splatter!

That night we drove to Jackson, WY (a little over 6,000 feet.) It was dark coming in so we couldn't see anything. The next day we set out for a hike which I thought would be doable at Jenny Lake. The Grand Tetons are striking; they rise sharply out of the ground to enormous heights; there are glaciers among the peaks. Jenny Lake was fun. We had a picnic lunch and then took a boat ride across the lake to where the trail started. An "easy to moderate" 1-mile climb was almost too much for me - but we made it both to some beautiful waterfalls and to a fantastic look-out. I was so proud of all I was able to do at that elevation!

Gabe and Todd, Jenny Lake behind

We took it easy the rest of that day. (Which was good because I soon discovered I was coming down with the cold I had so far managed to avoid.) That night, we went to dinner in Jackson, a fairly bustling touristy town with lots of downtown charm. Then to the Million Dollar Cowboy Bar. The bar lives up to the stature of its name: there are saddle seats at the bar, there was a country band playing and there were a fair number of authentic westerners. Unfortunately, I was fading fast, even though the people watching was first rate, so I took the car back to the hotel while the guys stayed out. (No telling the trouble they got into but I heard that Todd actually got out and danced to Sweet Home Alabama!)

Outside of Jackson

Saturday, we headed back to Montana through endless fields of Idaho wheat. The rodeo was in town for the weekend and it was a BIG DEAL. We ended up going to the rodeo that night. That was very cool. The bucking broncos were my favorite b/c if the riders fell off, or even if they made it the full 8 seconds, they had these two guys on horseback who would ride beside them so they could jump onto them. Then, the rider would jump down and the two guys would have to chase down the horse, which would still be bucking for a while. Fiesty!

Rodeo

On Sunday, it had gotten a bit cooler (I forgot to say, the weather at the beginning of the trip had been cloudy and on/off rain. But once we got to the park - like magic - it cleared and warmed up nicely.) But we got in a float trip with Brad - the trip would not have felt complete without at least one. It ended up being a pretty nice day despite having to be bundled up and fighting the wind. I think I might have caught the biggest fish that day. Overall, did decent amount of fishing on the trip, without a whole lot of catching, which was fine with me. :)

Me fishing at Bear Creek - sexy!

By our last night, I was ready to be home. I was coming into the worst part of the cold, and was cough, cough, coughing the entire plane ride home (or so it felt.) I hate being that person! I usually clean my seat area on planes when I first board; this time I cleaned before and after. At least I am a considerate sick person, right?

There is MUCH more to tell, but I will save it for another blog.

Whirlwind

The last three weeks have been a whirlwind. The week after D.C., Todd and I drove up to see my dad in Cleveland for the 4th of July. We had a really great time visiting and also got to see some cool stuff including an Indians game, the Rock & Roll Hall of Fame and drive through an area outside the city that has a number of Amish folks living.

The highlight of the outings was either seeing the Amish in their horses and buggies or walking around in Johnny Cash's tour bus. Both very cool and amazing in their own way. But of course the real highlight of the trip was seeing my awesome family up there - including three little nieces who I adore.

About a week after getting home from there, I went to Asheville for a night for a work thing. Normally, I don't travel much for work. But this was something special. The Secretary of the Interior is holding 20 listening sessions (in between flying to the Gulf to oversee oil clean up and restoration - shows what a priority this is to them) around the country to get peoples' input on how to get young people more turned on to the outdoors. Obama announced this "America's Great Outdoors" initiative recently and the DOI is researching the subject and will compile it into a report for the president by the end of the year.

Ken Salazar was not there, but his chief of staff was - as was the head of the Fish & Wildlife Service. The event was called a "listening session" and was held at a community college. The auditorium held 400 people and it was basically full of conservation-minded folks from all over the state. The Washington folks were very impressed by our enthusiasm and by what we have managed to get accomplished here even during tough economic times.

At the listening session, after some short speeches, we were all assigned into rooms which held 10-20 participants and were asked to answer four questions as a sort of discussion. There was a moderator to keep on topic and a recorder who wrote down everything that everybody said. (This is what will be used to compile the report for the president.) We talked about obstacles to getting kids connected to the outdoors, what might be done and what the federal government can do to help the states.

There is more to tell, but that is the gist of it and so I will move on. Except I do want to say that I got the chance to stay with a very old friend who I hadn't seen in two years. She lives in West Asheville and I stayed at her house so we had time to catch up which was great.



I got home from the mountains Thursday night and turned around and went to the beach (Holden) Friday morning with a few of my girlfriends. Traveled from one end of the state to the other! We had a lot of fun. Got some good beach and pool time in without overdoing the sun. We cooked good food, drank and played games. Really enjoyed the relaxed pace of the weekend.

My other news is that I had some pains in my upper right abdomen last week and went to the doctor and got an ultra sound. It showed "suspicious globules" in my gallbladder. I think this means that I don't have stones but rather spots of sluggish bile which could become stones. My doctor ordered a hida scan - which is basically a more sophisticated scan done with dye to look at your gallbladder - to follow up on that. Depending on how that goes, they will refer me to a surgeon. I'm kind of nervous about that but trying to take it one step at a time.

My mom had her gallbladder removed when she was 30, but she was having a ton of pain. I have not had a ton of pain, thankfully. But I have since found out that it can be hereditary. Diabetes is also a risk factor. According to my CF doctor, it is not uncommon in CF, either.

I don't mean to jump the gun by thinking that I will need to get it removed, but I would be lying if I said I haven't been thinking about it a lot lately. I keep thinking that I have for the most part so far avoided GI issues so commonly associated with CF only to have this crop up and possibly make things "not right" forever. I read that you are supposed to eat a low fat diet after gall bladder removal. Are you kidding me? Life without cheese right now seems impossible.

One other thing: I have a semi-sick kitty in the house. My cat Gus has been acting sluggish a couple of times and then he will seem better; I've also noticed that he has lost weight so it was time to call the vet and schedule for him to come. Gus has an appointment for Thursday morning and I hope to get some answers. And I really really hope that the answers are not something horrible. Love my guy so much.

D.C.

The always beautiful Union Station, Washington, D.C.

I'm a little behind in blogging... *sorry* I really do love writing and keeping you up on the latest happenings of the Catboogie. So I hope it isn't too discouraging.

Week before last I had to go to D. C. for some work training on Monday and Tuesday. I decided to ride the train up - it's about six hours from Raleigh by train; 4.5 to drive; and I hate flying, so it seemed like a good option. The ride up was smooth although I was a little panicked because I'd left the office on Friday in such a haste that I forgot to print out the information about the meeting time and place! I had emailed various people asking, but they were not answering over the weekend. I thought I figured out where the training was held; and I thought it probably started at 9, but decided to arrive at 8:30 for good measure.

So let me back up a bit. The hotel that was booked for me by our national office was called Hotel Rouge. Usually when one goes to D.C. for work they stay near the World Office proper, which is in Arlington, VA, so this was truly a treat. The Hotel was near Dupont Circle, a sort of newishly gentrified part of town (by newish I mean the last 20 years). It used to be sort of ghetto but has since turned into a thriving gay and hipster community. I was right at home. :)

I checked into the Hotel Rouge about 4 pm on Sunday. I quickly got settled and decided to set out for the National Gallery because I had never been there and they had an exhibit of Allen Ginsburg photographs. I have always loved the beats so I was super excited about it. I browsed through the main gallery, checked out the Ginsburg photos (which I loved!) and then crossed the street to the Sculpture Garden - a block large exhibit of different modern works set along a gravel path.

When I was done with that, I decided to head back into the vicinity of where I was staying and stopped at a restaurant near Dupont Circle and got two appetizers and a couple of beers. Fortunately I was not hungry because of the incredible heat - they were the smallest appetizers I have ever gotten!

The next morning, I got up and arrived by 8:30 at the alleged meeting place only to discover a locked door and a receptionist downstairs who had no clue of what I was talking about. Fortunately, around the same time, I received an email from the training coordinator who informed me that the training actually did not start until the following day. Not quite sure how that mistake happened! Pretty embarrassing, actually. But in any case, I returned to my hotel, changed clothes, extended my stay an extra night, and then changed the return ticket for the train.

The downside of the mix-up were obvious: I'd messed up the dates of my training, I needed more clothes and would be slightly short on a couple of my meds. But the good side was that I had an entire unexpected day of sight seeing in D.C. I decided to go to this new place called Museum - a museum of news. It sounds kind of weird, but it was really cool. Some of the highlights: part of the Berlin wall, part of one of the World Trade Center towers, Ted Kaczynski's cabin (the actual one!), among many many other cool things.

Section of the Berlin Wall

Ted Kaczynski (aka The Unabomber's) Cabin

After that, I headed to Madame Tussauds wax museum. I had never been and thought it would be a good way to kill some time so I didn't get stuck riding the subway during rush hour. All in all a very good day in the city.

Waxen Obamas

Tuesday morning, my training began. It was really good - we were introduced to TNC's new website platform, and talked some about web writing in general. That night, they provided dinner for us at a restaurant near there. No time for sight seeing that day. We finished off the training the following day at noon. I made my way back to the hotel, got my stuff, and took a taxi to Union Station. I love the feeling of just being in the city - you can pretend like you live there, fantasize about the urban life, and no one knows differently.

The train ride back was more crowded than the ride up had been. Every seat in our car was taken - many people were aboard for a long haul (the train runs NY to Miami). Because of various delays, I was two and a half hours late getting back to Raleigh.

It was good to be home. It was even better that I had the next day off work to just chill, unpack, rest up and regroup. Only seven days until Todd and I would set off on another trip - to Cleveland to see my dad for the Fourth of July. More on that to come.