… Then God Laughs

There is an old saying that goes something like, “Man plans, then God Laughs.” I must tell you that s/he must be ROTFL (rolling on the floor laughing) at the moment. It’s not even the things I planned, it’s all the unplanned surprises that have overtaken my best intentions to be more diligent about my blog. (I apologize upfront if this is TMI … and I apologize even more for whining.)

  • We left the Saturday before Christmas for our annual holiday  trip. That day, while out of town, I not only lost a crown on a molar, I bit it as it came out, completely obliterating it. It was almost a week before I could get back to Dallas and my dentist. And because of the New Year’s holiday, the new crown (read $$$) is delayed coming in. I finally am having it fixed this week (hopefully).
  • The day after Christmas I had my annual gastroenterology checkup. There’s enough going on that I had to go in for an upper endoscopy last Monday. Things aren’t too bad, but my esophageal stricture had reformed and my doctor had to stretch things out again.
  • My new right shoulder (reverse shoulder surgery last February) has been amazing. Even the doctor has been impressed at how well things have gone. But I rather suddenly experienced debilitating pain when I moved my arm. I was good as long as I kept my elbow close to my waist but anything else was painful. I saw my surgeon last week and the replacement itself looks great. However, it’s apparent that I have a muscle tear. Rather than face yet another surgery in that shoulder that’s already had four (two rotator cuff repairs, a biceps tendon relocation and a total reverse replacement), we’re going a more conservative route and let it try to heal on its own. But that means I have to keep my dominant right arm in a sling for several weeks.
  • On top of the health issues we’ve had a rash of household/auto issues. The kitchen sink clogged and needed a plumber (over the holidays), our ancient garage door opener finally broke beyond repair and had to be replaced, and there is a car issue that is going to take some serious $$$ to fix.

All this in the last three weeks. Sigh.

The good news is that RA, at least, is still at bay. After being on more than 10 different treatment plans over the years, I’ve been on the same biologic now for more than two years and am doing well, even after abandoning methotrexate last July and stretching out my infusion schedule. Because of that, I took on some part-time work starting December. (Of course, all these health issues and especially being in a sling has impacted my ability to work.)

In other good news, on New Years Eve, my husband and I celebrated the 25th anniversary of our first date. We had oysters and beer at a little seafood dive and have gone back every year since to mark the occasion.

I am hopeful that the rocky start to the year is not a sign of how the rest of 2019 is going to progress. My fingers are crossed that I’m getting all the bad stuff out of the way during the first of the year and that the rest of 2019 will not only be amazing for me but for all of us.

Happy new year and thanks for checking in.

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Would you rather …?

“Would you rather?” is a popular game where an individual is asked to choose between two options and often asked to explain the reason behind their answer. For example, “Would you rather win an Olympic gold medal or an Academy Award?” It’s a great icebreaker and conversation starter. The questions can be almost anything from serious to naughty and can be played in a wide variety of circumstances.

I recently played a real-life “Would you rather?” with my RA. I tell the full story in my post at RheumatoidArthritis.net here: https://rheumatoidarthritis.net/living/symptom-relief-side-effects-of-methotrexate/.

It’s Now November

My list of things to write about keeps growing. I have all sorts of topics on my list — each of which I’m passionate about: personal experiences, news from the ACR meeting, updates on healthcare reform, health and the absurdities of life in general. But as anyone who writes will tell you, sometimes the writing muse just goes missing.

I’m doing really well. I’m still off MTX since the end of July. I’ve also extended the time between biologic infusions. I was on a six week infusion schedule. I stretched it last time to seven weeks, and have my next infusion scheduled for the standard eight weeks. While I’ve been a bit more achy and have a bit more morning stiffness, I actually feel great. My last labs were the best they’ve been in years, including my liver tests which are now normal after I’ve abandoned methotrexate.

I am having conversations with a former client about a longer-term, part-time working relationship. This will allow me to work with some great, smart people; be productive and put some extra $$ in the bank. At this point, it will no doubt be after Thanksgiving before that launches, but I’m looking forward to being professionally engaged again.

There is one fly in the ointment. Just in time for the holidays, I seem to have developed a tree-nut allergy. Fall in Texas means pecans: roasted salted pecans for munching, pecan pie, pecan waffles and muffins, pecan pralines, pecans and chorizo in the turkey stuffing, etc. etc. I had a pretty severe reaction the other morning when I had a small amount of granola and fresh raspberries with cashew milk for breakfast. I’ve occasionally had itchy skin/hives when I’ve overdone snacking on mixed nuts, but this time my mouth and throat were involved and the skin reaction was both immediate and significant. I don’t know if it’s because I’ve backed off the immunosuppressive medications or whether I’ve just naturally developed the allergy. I don’t think there’s anything to be done except avoid nuts but I have an appointment with an allergist in a few weeks to have the conversation. The good news is that peanuts are legumes, not tree nuts so I can still eat granola bars with peanuts and have peanut butter toast for breakfast. (Yes, I know that there is a chance for cross contamination because peanuts are generally processed in facilities that also process other nuts. Right now, I’m willing to take that chance.)

So I’m here. I’m doing well. I’m stalking all of you through your own blogs and social media posts and I promise that I will starting writing again.

Hugs to all. Thanks for checking in.

I’m still here

Can’t believe it’s been over a month since I last posted.

I went directly from our wonderful vacation to a major client project that has kept me slammed from early morning to late evening. It’ll be over in about 10 days, so hopefully I can provide more of an update.

I guess the RA news I have to share is that I went off MTX before the trip (end of July) and haven’t been back on it since. I didn’t really want to go through customs in multiple countries with hypodermic needles so I left them at home. I’m actually feeling better than when I was on MTX. I think part of my issues were the side effects of the drug (such as fatigue). I see my rheumy in a couple of weeks and we’re going to discuss staying off it.

Other than that, life is good and very, very busy. Even if your life isn’t busy, busy, I do hope its good. Thanks for checking in.

2018 Trip: Last Stop – Amsterdam

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Total time: 1 travel day, one exploration day, then travel day home. Total steps walked: 21,875. Total miles walked: 9.

Our trip from Berlin to Amsterdam was a great example of how international our travels really were. We shared our train compartment with a couple from Argentina. With our limited Spanish and their lack of English it seemed like it would be a very quiet six hours (which turned into eight because the train was late). But through the use of those limited words, Google translate and a lot of non-verbal communication, we were great friends by the time we got to Amsterdam.

We would up going to Amsterdam quite by accident. It just turned out that Amsterdam had the best direct flights back to Dallas from that part of the world, so it was a “why not?” kind of moment. We got there one day, had one day to truly explore then came home on the third day. I truly enjoyed the city and wish we had scheduled a real visit.

The only thing I didn’t enjoy was Amsterdam’s airport. It’s huge and chaotic. Check in was a nightmare. The waiting lounge (equivalent to an Admirals Club) was a 20+ minute walk from our gate (dragging bags). We were then loaded on buses to the plane and got to climb up the equivalent of two flights of stairs to board our 777 airplane. Not the best ending to a great trip.

But Amsterdam was great. It was scenic, the people were great (when they didn’t run over you with their bicycles), lots of English spoken, amazing art and performances and the best food we had on the trip. The tram system made it very easy to get around and I’m already trying to talk my husband into our next trip. And before you ask, I didn’t “indulge” in the flourishing cannabis trade. I actually only saw two “coffee shops” and didn’t care for the looks of either, so I passed.

These pictures express my experience better than I could. A great city to finish our European adventure before returning home to Dallas!

Thanks for going on this journey with me!

2018 Trip: Berlin

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Total time: 1 travel day plus four nights. Total steps walked: 40,623. Total miles walked: 20.46.

Are you worn out yet? I was starting to be by the time we got to Berlin and after the first day futzing with missing electronics, I was really getting frazzled. But we soon found our footing. There is just so much to see and do in Berlin. And there is just so much history — not only recent, but centuries old.

We stayed at the Moxy Hotel which is actually in what used to be East Berlin. The East Berlin side is still not quite as developed as the western side and there are some strange things with the transit system where things don’t go east-west like you think they should.

The Moxy is a Marriott Hotel brand and I would describe it as very millennial. You check in at the bar. There are shared working spaces in the lobby (as well as a bear in a bathtub). There are all kinds of neat tech touches in the room like lights under the bed that come on at night when you get up and lots of built-in USB charging ports. The staff was great. What wasn’t great was that directly across the street was a park occupied by a community of homeless people and you had to walk by the park to get to the train station. And you had to go to the train station to get anywhere, including someplace to eat. I thought the hotel was really cute but my husband didn’t care for it as much — partly because the room was small and the bathroom was smaller than my home closet. If it were in a different location, I would definitely stay there again because it was just so fun.

The days were filled with sightseeing. I’ve included pics below. We visited the Memorial to the Murdered Jews of Europe which is both thought provoking and inspiring. We also visited the Topography of Terror that originally housed the Gestapo and SS headquarters as well as having the longest piece of the Berlin Wall still remaining. Out of respect I have not included pictures of those sites.

My husband celebrated his birthday on our last day in Berlin. I was able to get reservations at the rooftop café at the Reichstag. It includes admission to the famous dome. Breakfast was a feast, but have I mentioned the bees? There were bees everywhere we went in Germany. Outdoor restaurants would literally be buzzing with them. The bees even found us in the rooftop garden!

After a travel day into Berlin and three full days of sightseeing, we were off to Amsterdam!

2018 Trip: First Day in Berlin

When the Kindle ran away with the iPad.

I’ll get back to the actual trip in the next post, but our first 24 hours in Berlin were quite memorable for some very wrong reasons.

We took the train from Nuremberg into Berlin. Without really explaining what happened (because it was at least 85% my fault), my Kindle (tablet/eReader) and my husband’s iPad got left in the seat back pockets on the train. When we got off the train in Berlin, the Kindle and iPad continued their travels. We didn’t know it then, but they made it all the way to Hamburg (four more hours by train).We didn’t miss them for more than an hour later after we had disembarked from the train, found a cab, made it to our hotel, checked in and were unpacking. That’s when my husband asked me what I’d done with his iPad. (He should have asked me that when we were still on the train, but that’s a different story.)

My Kindle really doesn’t have anything on it besides books. I don’t use it for anything but reading and occasionally accessing the Internet. My husband’s iPad, which was not password protected, basically had links to accounts, passwords, credit cards, etc. etc. etc. It was critical that we locate or disable it.

Let me interject here that, based on observation, the German people are some of the most law-abiding folks I’ve ever seen. We’d just come from London where pedestrians tend to view those walk/don’t walk lights merely as early Christmas decorations, crossing the street whenever and wherever they’d like. Not so in Germany. It could be 3:00 am with no traffic in sight and a German pedestrian would wait for the green “walk” light to come on. People are chided if they leave trash on public transport and children are carefully school on putting the trash in the proper recycle receptacle. Everyone appears to be amazingly honest and respectful of the rules.

Had we lost our electronics on public transportation in the US, I don’t think we’d ever seen them again. Either the person who found them would have kept them or they would have been forever missing in the quagmire of lost-and-found. But in Germany, we felt we had some hope of getting them back. Complicating everything, of course, is the fact we don’t speak German. (We did log into our Kindle/iPad accounts and did the “find device”, “lock device”, etc., but neither device was connected to Wifi so it didn’t do much good.)

While we came into the main Berlin train station (below), our hotel was less than a block from Berlin’s east train station, or Ostbanhof. We started there.

Thank goodness for the Google Translate app on my iPhone. I was able to put in our problem in English and it translated it well enough that the Deutsche Bahn (German trainline) person understood. She wasn’t able to help us directly, but said their website had a lost property form we could fill out and that was our best course.

We went back to our hotel and while my husband tried to remember (and put on hold) all the accounts available through the missing iPad, I struggled with the English translation of a German lost-and-found form. I also found an email address and tried email as well, to which I got a prompt answer saying that they hadn’t found anything.

We spent a stress-filled evening, but things changed the next morning when I got a notice (in English!) that the electronics were at the lost-and-found in Hamburg and that we could either claim them in person or have them sent to us.

Since Hamburg was four hours by train one way, we requested that they just send the items back to our home address (which we would pay for). Great plan, except that both the Kindle and iPad have lithium batteries and aviation regulations prohibited them from being shipped via air (which they would have to be to be sent to the U.S.).

Then, the most glorious thing happened. I was in touch with someone who actually cared. After several emails wherein they determined we were going to be in Berlin for a few days, they instructed us to go to the Berlin main train station lost and found and have those folks call the lost-and-found team in Hamburg.

Again with the translation app — this time it was more complicated because we not only had to explain the situation, we had to explain that we wanted them to call Hamburg and talk to a specific person. (Why they would do that for stupid American tourists, I don’t know …) The Berlin person had very little English, but had a great attitude of trying to help us, which made all the difference in the world. At this point it was 7:30 in the evening and our Hamburg guy was scheduled to end his shift at 8:00, so time was short that day.

The Berlin lady called and connected (after several tries and transfers) to our Hamburg guy. He had apparently taken the initiative to put our electronics on a train headed back to Berlin arriving at 9:30 that evening. He arranged with our Berlin lady to have it retrieved from the train and, with the proper identification, available for us to pick up.

Relieved, we went to dinner and made it back to the Berlin train station with time to spare. Our lady was still on duty and waved us over (ahead of the line) when the electronics were delivered to her. A few pieces of identification and signatures later and we were reunited!

The electronics were missing just over 24 (very stressful) hours. During that time, I exchanged 11 email messages with staff as well as in-person “conversations” and multiple forms filled out. The miracle that we retrieved the Kindle and iPad is a credit to the dedication of the Deutsche Bahn staff to help us. I’m sure they considered it just doing their jobs but it meant the world to us.

We exchanged 11 electronic messages within 24 hours

After this tumultuous beginning, we had some great times during the rest of our visit to Berlin. I’ll tell you about them in the next post! Needless to say, my Kindle and my husband’s iPad spent a lot of time locked in the hotel safe!