May 2016 Europe Trip

We'd packed, planned and prepared for every possible thing and finally it was time. On the 30th of May, we loaded up the car with the dogs and our giant international suitcases to drive to the mountains for two nights, pre-flight. We were going to be leaving our dogs with a friend up at our mountain house. And we were flying out of Charlotte which is a shorter drive from Newland than Raleigh.

On Monday, May 2 (our anniversary!), we flew from Charlotte to London to Dusseldorf, Germany. My brother was there smiling at the airport to greet us. We proceeded to take the train to the city he is living in for the summer with his wife and son, Bochum, Germany, about an hour and a half away.

We spent four nights in and around Bochum followed by three nights in Ghent, Belgium. We did one side trip to Bruges, Belgium. Both Ghent and Bruges have many Medieval buildings in tact. Here are pictures from Germany (mostly Bochum), Ghent and Bruges Belgium.

The bakeries were amazing!!

Nate and I at Bochum Central Park

Asparagus season - asparagus everything!!

Todd and I outside a restaurant in Bochum

My nephew Simon riding his balance bike - all the rage among German kinder!

Some delicious beer at a bar in Bochum

Some kind of danger sign

Bochum Central Park is FILLED with rabbits!!

Bar selfie - the kids behind me are playing a bar game with stacks of coasters that we couldn't quite understand. Still interesting to try!

A familiarity to any Starbucks patron

More delicious pastries in Bochum

Brother Nate and his son Simon on a day trip we took to a town near Bochum

Todd looking out the castle window

Some kind of crazy German drink comprised of wheat beer and fruity stuff

Todd entertaining our nephew at a restaurant

Getting labs while in Germany. Quite the adventure that was!

A renovated castle restaurant we visited which had (Todd claims) the best waffles in all of Germany

Aunt Laura entertaining nephew Simon - he pretty much thinks I'm the bomb

Picture of me taken on top of the castle with awesome waffles that I'm sure involved climbing a ton of steps - go me!

Simon charging ahead on the self-guided tour

Just another torture chamber picture, no big deal

Some guy was selling a bunch of Nazi memorabilia at a flea market in Ghent. Why not?

A beautiful city garden in Bruges, Belgium

Adorable owl chocolates in Bruges, Belgium

View of old buildings from the canal tour perspective in Bruges, Belgium

Deliciousness everywhere in Belgium

A late night walk, viewing lighted up buildings in Ghent, Belgium

There were town squares everywhere in Belgium

An old canning machine at Zot brewery in Bruges

So many interesting confectioneries in Bruges

Another night time picture: view of buildings across the canal

Night reflection of lights in Ghent, Belgium

Best. Waffle. Ever. Eaten canal-side in Ghent

View of the canal in Ghent, Belgium

The dragon head! Used to sit atop a famous tower in Ghent, Belgium

Delicious beer, anyone??

Part Two: Ireland!

On May 10, we had a hellishly long journey - three trains, two taxis, two planes, one bus and our wonderful tour guide/host/friend Tom - to get from Ghent to Dusseldorf to Dublin. We had a horrible delay at London City Airport. (If you've never heard of that airport it's because it's so damn small!!) At least we were comped a bunch of vouchers. The airport was having technical difficulties with their monitors inside the terminal so there were a huge number of people who had missed flights crammed into that place.

Our time in Ireland, spent mostly with Todd's best friend Tom, was very enjoyable and relaxing. We were so fortunate in that Tom took us to parts of the west coast that we didn't see on our last trip and not only was the scenery amazing but (something you totally can't control which is usually cloudy/rainy and yuk) the weather was incredible too!

We stayed the first night at Tom's, traveled on the West coast for four nights, and then spent the remaining four nights back at Tom's (with Maria, too!)

Our first stop setting out for the West coast in Ireland was, of course, a distillery. Here, an old wheel in Kilbeggan Distillery.

Ah...vats of fermenting whiskey

The bloody Cliffs of Mohr!

I kicked ass hiking around at the Cliffs. Go lungs!

A really ancient burial or ceremonial structure

There was some creepy/cool stuff at some of the old grave sites we visited at ruins of abbeys. Here, the virgin herself.

Grave markers outside the old abbey

Ruins at an abbey

Tower at one of the Abbey ruins. Nothing phallic going on here!

I love the stones that are so old you can barely read them: smoothed by the sands of time and overgrown by mother nature.

Former mill and attached house that Yeates built/restored. Right next to a beautiful river in the middle of nowhere Ireland

Everyone loves an Irish door, no?

My go-to alcoholic beverage in Ireland. If only I liked whisky!

Guinness sign in Old Irish

Deciding on whiskey...so many choices, so little time...

A Connemara pony! These horses are bred specifically to be shorter and stouter than other houses so they can best work the soft, watery terrain of the region.

Connemara National Park: I managed ~1/3 of the way up and Tom and Todd made it all the way to the top!

A picture of a bog woman...so fantastically creepy!! There are 4 famous bog people in Ireland. We saw their eerily preserved bodies in person at a museum in Dublin.

Kylemore Abbey still functions today. It is a tourist destination primarily because of its enormous formal and other various gardens

Baby sheep from the tour of the sheep farm. Baby sheep are the best!! We saw them all over Ireland and I couldn't get enough.

The baby sheep are about 5,000 times cuter than this in person. They are especially cute when you drive past them on the road quickly (sorry, Tom!)

The last part of our western tour was driving out Achill Island. It was so beautiful, the sea and the soft cliffs seemed to go on forever. Here, view of the beach in the next photo.

A little too cold for swimming, eye? But plenty warm for a good old Irish sunburn! (~70 degrees)

This cool stone circle structure we visited, much older than Stonehenge

A cool trail/pilgrimage marker of Saint Somebody

"It's not religion, it's more than that. It's history."

The gorgeous Maria and handsome Tom taking us out for our last night

The only store Todd has ever been excited about going into in the history of forever

Waiting for the train to take us to Dublin. Tom showed me something foreign: being on time.

A door arch into a church ruin

Our trip home was thankfully uneventful. I took some medicine to make me drowsy. Back in Newland, our suitcases stuffed with chocolate, whiskey and souvenirs, we spent a couple of days hanging out and seeing family before we drove back to Raleigh. I spent much of those days, as well as a day when we got home, sleeping a lot of the day. I felt down, my glands swelled up a little, and I was a little sad to be home.

After those few days, a strange thing happened. When I travel I, probably like a lot of people, think about what it would be like to live in the places where I travel. As I started thinking about what things made my European vacation unique - more socially minded society (Germany), great beer any place at all that you go (Belgium) and the simplicity of life in small-town Ireland - I then started to think about what made my city unique.

While most of North Carolina is completely backward, our little piece of it is not bad. There is a huge handmade/local movement here for everything from honey bees to beer and vegetables! I love that I am two hours from the beach and three hours from the mountains. And most of the people who I associate with are not mean or discriminatory toward people who are different and - most of all - a lot of people around me disagree with the shenanigans the state legislature has been up to.

In addition to the refresher about the things that make me happy where I am, I also realized a couple of things I wanted to start doing differently. The big one was that I need to find a good, steady yoga practice. I've been away from yoga for too long. Secondly, I knew that there were some personal issues I'd been having with people that I needed to let go of and just move on. Lastly, I had really enjoyed not having constant access to facebook, texts, email and the internet. I simply could not believe the amount of mental space that takes up in my brain all. day. long. I strive now to be less digitally connected and more connected instead to books, my writing and all of the amazing people in my life.

#WeAreNotThis, Are We?

When I look back on this time in my life, it will be the time when I was acutely dissatisfied with politics, when my volunteer work was absolutely hopping, and when I could not escape the music of the band Kansas.

But this blog is not going to be about nostalgic 80s music or my busy volunteer life. I do, however, have some choice words about what is going on politically right now, both nationally and in our state. Politics has never upset me as much as now. I just cannot believe what's going on!

Let's back up a bit. This anger has been building for a while. It started with he-who-shall-not-be-named who's running for president. He seems to spread hate everywhere he goes. His one potential good quality - that of being a good business man - is even false.  What else is there to like? Surely people realize that those who put others down are actually insecure about themselves (psychology 101.)

I believe with every bone in my body that the nameless man is a very bad man, incapable of leading or representing our country other than as if it was a game, and constantly making moves so that he and his super rich buddies will be the big winners after four years. My prediction: Everyone else will be the losers. The rich will be paying lower taxes and the middle class will continue to be the one holding the economy afloat. I cringe to think what else could happen during his dynasty. How does a country fare well having an unprofessional, immature lout representing it?

Lastly, I'll say this about the nameless man. His hatred and racism brings out the worst in his supporters (an apparently his haters too). They jump to violence, they scream and yell at those who disagree and they seem to desire a less-inclusive, more totalitarian form of government. (Stalin, Mussolini, Hitler, Kim Jong-un... Are these people to replicate?) No thanks! Fortunately, fortunately, not only is the man himself but also other, actual respected members of his political party, are going to make sure that he gets no further than the campaign trail. His disappearance from every news broadcast and daily headlines cannot happen soon enough for me.

Switching Gears Slightly

The bigger concern for me right now (although it's very close) is what's going on in state politics. It's actually closely related.

During the last few years, most people are aware, our country has seen  positive changes for the LGBT community - to me, it has been such a relief to think of the stress, tip-toeing and violence disappearing and for the LGBT lifestyle not to come into question with as many people. (Well, I guess you can't ever really know what people are thinking, but at the very least it has became less or unacceptable for LGBT folks to be publicly harassed, ridiculed or discriminated against.) 

The backdrop to what's going on now: Our governor came into office a few years ago and I really thought that he, having previously been the mayor of a major metropolitan city in North Carolina (Charlotte), was going to be fairly centrist in his politics. That, sadly, has not turned out to be the case. Unfortunately, the billionaire man who was the driver of the 2010 legislative tea party sweep has also been molding our governor.

Recently, the NC legislature passed a very bad bill (signed by the governor 12 brief hours later) lessening the protections of LGBT people. Here is what it did: It bans all local non-discrimination ordinances with protections for people based on sexual orientation and gender identity, among other things.

The bill came about because the City of Charlotte was trying to pass a provision that would allow transgender people to use either a men’s or women’s restroom based on the gender with which they identity. Several cities in NC had LGBT protections in place which were nullified. Talk about taking a social step backward!

The argument was sold by using some very flawed logic. Lawmakers played on peoples' fears, and they made safety claims that just aren't true.
I also heard the argument that citizens have the right (definition: the thing that gives citizens political and social freedom and equality) to treat LGBT people differently because of something their religion says (or made up or something they just don't like)! That is straight up discrimination (definition: to make an unjust or prejudicial distinction in the treatment of different people or things, especially on the grounds of race, sex or age), and no one has the right to do that. 

I want you to know that for me, this is a very personal issue, and it's very embarrassing to be a North Carolinian right now. Two of my family's best friends when I was growing up were a gay couple. It never seemed weird or unnatural to me. Ever since then, I have had a long line of gay and lesbian friends. It hurts me to see what their struggle has been and to see it continuing. It is my struggle too. They are normal people and they are great people, just like other normal and great people you have in your lives.

The Anger Inside Me

I have been trying to figure out why all of this LGBT hate makes me so angry. Partly because it's personal: I said already told you about my friends and I can't bear to think that some people see them as less-than-human or freakish. It makes me very sad. Also, I don't believe that sexuality is black and white for a lot of people, myself included. And it irks me that some people consider themselves morally superior to others just because they go to church or believe in a (noninclusive and only conditionally loving) god. It would be nice if it was true, but sadly, it is not.

If only people would accept that homosexual, bisexual and transgender people are just part of the world, not out to mount an offense on straight people, trying to convert them or pervert traditional man-woman relationships, they might be more accepting. If people spent more time on acceptance and less time on hating, our problem would already be over. We wouldn't be discussing it in 2016 and we certainly wouldn't be making laws about something that is a deeply personal and private choice.

Our two good friends, Carolyn and Carol, with their adorable girl, Ellis

So here's the thing: I am so worn out and tired of being angry! It isn't healthy to carry all of that around. I have tried to find peace with all of this. I've signed petitions, I've given money, I have talked to people and now I have written this blog. I know I cannot find solace from the world; it has to come from within myself. But I am struggling to figure out how to rationalize it, how to separate myself from the bad, how to make it okay. So far, I got nothin'.

Hope

I have never been this worked up about politics. I want to react and engage about these issues but I want to do so smartly. I do not want to be a hater, like them, because I don't want them to block me out and hate me - nothing ever gets accomplished that way. I don't want to keep my head down because differences of opinion will ever get solved that way. I just wish I could zap some facts and accurate information into those peoples' brains. And to show them what compassion really means, that it makes you a bigger person, not a lesser one.

I have hope within myself that the world will become a better, more understanding and loving place where people take care of their fellow humans, animals, plants and nature. I ask the universe to lead people in that direction every day. Maybe it is too much to ask and I can only do my small part. But that seems like a global tragedy, the forever missed opportunity and an indication that we, as humans, are probably doomed.

So who knows what will happen? I feel pretty secure about the nameless one not making it into office, or even onto the ballot. But what about NC? I don't think that our governor will be reelected, not after this. Which state will be next to follow our bigoted legislation? Mississippi and Tennessee have already done it. Which minority will be attacked next? Maybe it will be someone that you know or care about or even you yourself. How many companies and people will divert business away from NC, move somewhere else, take their tourist business elsewhere and think down upon all of us?

I'll tell you one thing. I'm not sure how many cancelled Bruce Springsteen-level concerts people will put up with before state government concedes that they are wrong. But I know a lot of people who love this state and are as furious as I am. I'm pretty sure they're here to stay, and they have a vested interest in making sure that North Carolina does not continue to be on the wrong side of history. We all do.

A Bunch of Little Things

In celebration of the 10th anniversary of the Hurricanes winning the Stanley Cup, a bunch of the old team members came back!!

I've had a bunch of little things going on with my health lately. And a bunch of stuff in my personal life, too. Nothing too terrible. But small and annoying things. And so I am going to allow myself to do something I don't do very often - complain.

While the cold I last blogged about did go away without me needing antibiotics for the first time in forever, it did take weeks for me to get over the post-nasal drip and associated cough. But it's over now.

I had a bad migraine overnight Tuesday night to Wednesday morning. My one weapon against it, Tylenol, didn't do much good. I never used to get migraines, but now I seem to get them every few weeks or so. I've brought it up to the doctor but he doesn't know why. I guess it's bearable for now but if it gets worse I will have to do something about it.

In my last blog, I wrote about how my kidney numbers had gone up so my doctor took me off and changed a bunch of things with my meds. (One of those meds I was switched to, a rare inhaled antibiotic, I still haven't been able to get all the supplies I need after many dealings with pharmacies, specialty pharmacies, and my old oxygen company which had to arrange for a special compressor for it.) Anyway, one of the meds they reduced for me was an anti-viral medicine to control CMV, a virus which I have been culturing at low levels in my blood. So then what happened? The CMV came back at a level high enough for them to want to treat me for it. I narrowly escaped having to get a PICC line for this on Thursday by suggesting that we go back to my old regimen and see how my kidneys handle it. So we are going to try that first. Fingers crossed because I've heard it can take months for the virus to clear up on IVs.

Also on Thursday the cat accidentally scratched me. I let my coordinator know because I know that can be a concern and I wasn't sure what the protocol was for that. So now I am on two oral antibiotics for two weeks - one three times a day, the other twice a day. These also put strain on your kidneys, so in addition to my 64 ounces of water per day I consume, I have to try to drink even more. I have also cut back to one cup of coffee and no alcohol to reduce dehydration.

Smurf blue pills to prevent cat scratch fever

I am also having an ongoing problem with either my hamstring or IT band in my right leg. I might be prone to this kind of injury because of all the medications that I'm on. Also, my low back pain is a persistent problem for which I am taking a muscle relaxer and pain meds on a fairly regular basis. I really need to go to physical therapy but I've just not been up for the commitment. I have, however, started to get a bit more exercise, which is both good and irritating for my back. I've stepped up my cardio to three times per week (in addition to my dog walking) and I am going to try to find a yoga studio to go to (they are so expensive!!)

It feels lately like it's always something.

On a personal level it also wasn't the best week either. Todd got a cold so I was busy trying to avoid germs. My cat got a bite or something from another cat outdoors and had to be taken to the vet. Our heat went out and the repair wasn't cheap. And I found out that one of the women I have been volunteering for and with whom I have an awesome working relationship is leaving for another job.

On a positive note, I have made good progress with getting some big projects done around the house and that feels good. Our attic is cleaned out, organized and has been better insulated! It was a huge project. I got my iPad working correctly and synced with my phone and computer and I have been using it a lot. Also very exciting: we bought our plane tickets to go to Europe this summer! We will be flying to Germany to see my brother, who is there for five months while his wife does a teaching exchange, and then to Ireland to see Todd's very good longtime friends who moved there a couple of years ago.

Attic treasures...Sega Genesis anyone??

I guess that's it.

~ L

My First Normal Person Cold!

Our new cat Maya (aka "Kitten")

I have had lots of ideas - new year thoughts, writing my donor letter, resurgence of soap making, losing a beloved cat and the shenanigans of our newest feline family member - but I have been slack about writing. I'm sorry! Although I am tempted to do one of the "update" blogs that I so despise, I am going to resist and instead talk about my first real person cold last week! (I will mix in some catch-up pictures instead.)

Monday morning I woke up feeling awful: sore throat, productive cough, swollen glands, and a bad headache. Fortunately, I had no fever and my mucus was nothing but clear. I can't tell you how strange it is to have a cold with normal people's mucus! Every time I coughed I swore it was going to be a big gross blob, but it wasn't! So weird.

We went to Michigan for Christmas. Here, Simon reluctantly poses for a photo.

Todd was concerned and thought I should call my coordinator. Duke being Duke, they wanted me to get a slew of tests to rule out strep, flu, and to check my white blood cells and other blood work. I dragged my ass out of bed and Todd took me to Duke Hospital in Raleigh. I was coughing uncontrollably - that devilish tickling in your throat - in the lab waiting room. It reminded me of the bad old days of suppressing coughs in public.

After the Duke excursion, I went home and went back to bed. I can't remember what else I did, but it probably involved binge watching Nurse Jackie.

I have been cooking at home more and eating better because of a meal ingredient delivery service I started using. This Italian meatloaf turned out really well!

One thing that kind of sucks about transplant - besides being dragged out of bed for proactive tests when all you want to do is lay around in your pajamas - is that you aren't allowed to use any of the traditional "cold and flu" remedies. You are stuck with Tylenol and Guaifenesen. It's hard to find, but Guaifenesen in liquid form does exist - it's like a stripped down version of Robitussen. After that, you are relying on what feel like old-fashioned home remedies like cough drops, hot showers, hot tea (no honey!), getting lots of sleep, and good old sweet time. It's very primitive for someone who has undergone such a complicated life-saving surgery.

The good news about my labs was that I was negative for flu and strep. The bad news was that my kidney functions were not good - my creatinine had spiked way up to 3.0! Because of this, several medication changes were made. They told me that drinking 64 oz water/day was mandatory, and more fluids beside that, if possible. I've developed a system for that and I've really tried to lay off dehydrating beverages.

Soap making is picking up again! 808 Soap has a new client opening a salon and she wants to sell our bars. Here are some sample size hearts we made her for Valentine's Day.

As a side note, all of this was happening during my COBRA transition period - a time during which I am technically covered (but only retroactively) but sort of not covered. Fortunately with many phone calls I was able to straighten everything out and the insurance ship is now sailing smoothly.

A short regression: Somewhere in the middle of all of the calls and emails with my coordinator, tracking all of the medical changes that were going on, and getting procedures done, something occurred to me: I am damn good at being a patient. I know, who cares, right? And - here's the weird thing - I actually kind of miss it sometimes. I know that sounds crazy, but it's what I've known all my life. Doctors, clinics, labs, medication changes...it became so much a part of my life before transplant that in some ways it's actually difficult to leave behind.

Don't get me wrong, there is a LOT that I don't miss - the hours of treatments, the weeks of IVs, the days I felt like crap. Good riddance to all of that! But there is a human connection and special kind of attention one gets with doctors, nurses, lab technicians, even fellow patients, that I miss. In ways I feel totally disconnected from my old CF community - because once you get new lungs, you have "transplant," not CF. This could be another whole blog but I will stop there.

Anyway, fortunately this cold turned out not to be anything serious. I'm very grateful for that. (I also live with that whole "when is the next shoe going to drop" feeling in the back of my head. Could this be the beginning of my downturn??) And in a way, I'm glad to have it behind me because I always felt it looming in the background, and I had some idea of it being really really terrible to go through a viral flare-up with a suppressed immune system. But it wasn't! It was just as miserable as a normal person gets. Hooray for normal!!