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.
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!
I’m back from a wonderful vacation (more about that later). While I was away the great folks at rheumatoidarthritis.net published a post that I think resonates with a lot of us — what if our labs say we’re doing well, but we still feel bad? This is the state I’m in at this point and I discuss it here: https://rheumatoidarthritis.net/living/30071/.
First a note that this post is not directly about RA, so if you’re searching for info on that topic, please check out my other posts.
I’ve been contemplating our changing social mores lately and about our roles as chronic illness patients. With this as a backdrop, this morning I was creating an account on the website of a British company. In the pull-down menu of salutations, there was “Mx.” listed along with the usual litany of “Mr.”, “Mrs.”, “Ms.”, “Dr.”, etc.
Although this has been around for awhile, I had never seen this designation before. I could only conclude that it would be used by individuals who didn’t think their gender or marital status was either relevant to the situation or perhaps anyone’s business.
Being in the generation that gleefully dropped the Mrs. vs. Miss designation in favor of Ms. for women, this seems like a logical next step. (Although after being married for more than 20 years, I have adopted the more classic “Mrs.” when asked.)
But it makes me wonder if we need these designations at all — at least for social and most business interactions. I find that things that label us tend to separate us — gender, religion, race, age, etc. This opens the door for “us/them” discrimination. Does it really matter if we address an envelope to “Mr. and Mrs. John Smith” as opposed to “John and Jane Smith”? And why should we have to list our marital title (which also reveals our gender) on a website? Does it matter if I’m a Mr., a Mrs., or a Miss as long as my credit card works?
I do believe we should allow people who have earned titles to continue to use them if they wish — such as Dr. So-and-So. And certainly the military or other organizations that rely on an established chain of command should continue to use them (at least internally).
But I am given to wonder if the great unwashed rest of us should even bother with these designations and what great cataclysmic event(s) would occur if we simply stopped. Would all those empty data fields in all those trillions of databases simply collapse and crash cyberspace? (And would that be a bad thing if it did?) Would the worldwide ink companies suddenly go bankrupt because we quit writing/printing the salutation on the front of envelopes and therefore used less ink?
I think the British are on to something with their “Mx.” idea. I’m just not sure they’ve gone far enough. (I didn’t see “none of the above” or “none of your business” options.)
I hope that your designation today is both healthy and happy, because really that’s all that matters. Thanks for checking in.
Even though I’m taking some time away, I couldn’t help but provide a mid-year update. It is, after all, July 1 and we’re now in the downhill slide into all the end-of-year frivolity. (It’s only 177 days until Christmas!)
I started the year with some (non) resolutions and I’m pleased to say that I’ve kept many of them. However, I’m also here to report that I have various new body parts, lots of airline miles and 15 extra pounds that I didn’t start the year with.
New Body Parts
As reported earlier, I had a reverse shoulder replacement in mid-February. I’m just over four months out and the shoulder is doing terrific — much better than my other shoulder which I had replaced about nine years ago. Seriously, it’s wonderful. Total recovery is a long process, but I have an amazing amount of strength and range of motion already.
I also had cataract surgery in both eyes. The second one was about two weeks ago and the first one was four weeks before that. Like my shoulder surgery, these new “eyes” have improved my life immensely. Surgery was easy, recovery has been good and my sight is fantastic. My only regret is that they didn’t have any options for X-ray vision eyes when I had them done. 🙂
I am hopefully done with surgery for 2018!
In the midst of all that surgery, it seems like I’ve been traveling quite a lot the first half of the year. I went to Austin, Texas; Philadelphia (twice); Washington, D.C., Wichita, Kansas; Chicago; Nashville and Las Vegas. Most of these trips were related to my advocacy and were both enjoyable and productive. The trip to Wichita was to attend the memorial for my younger cousin who died of brain cancer and which still grieves me.
Travel is in store the second half of the year as well. While I’m sure there is more travel looming in my future, at the moment I have firm reservations for London and Norwich, UK; Munich, Nuremberg, and Berlin, Germany; Amsterdam, The Netherlands; Tucson and Phoenix, Arizona; and Las Vegas (again).
It’s really been a perfect storm. During all the surgery recovery, not only was I not exercising, my husband was responsible for a lot of meals which consisted mainly of take out. In addition, my cataract surgery recovery included eye drops that had prednisolone in them (!) so I was on steroids for eight weeks (four weeks for each eye). And, of course, traveling seems to put the pounds on everyone. Fifteen friggin’ pounds. Sheesh! And I worked so hard to take it off. Back to the alternate day fasting and exercise!
So that’s how my year has gone so far. I’m proud to say that I’ve done pretty well with my resolutions to find a better balance in my life, to try to consciously be kind to people (which is tough sometimes when you’re on steroids …), and to keep positive influences in my life. Sustaining the weight loss has been a challenge, but the year isn’t over yet.
I hope the first half of the year has been kind to you and that the rest of the year delivers on the promise of health and happiness to you and yours. Thanks for checking in.
This blog has introduced me to some amazing people, opened doors to participate in ways I could not have imagined, and made my life more fulfilling than I could have asked.
The landscape has changed a lot since I started Carla’s Corner. When I was diagnosed, I had a hard time finding patient stories. Now, thanks in large part to social media, there are bloggers and podcasters and Instagrammers and all kinds of patients making their voices heard in ways that didn’t even exist 10 years ago. These incredible people demonstrate first-hand that you can not only survive, but thrive with this disease.
So, after a decade of doing this, I think it’s time I took some time to think about where this blog and I, as an advocate, are going to go. I’m going to take off a few weeks — 10 to be exact — between now and the end of August. It’s a great time. I’ve got a lot of traveling to do the next couple of months (including a terrific trip that includes having Sticky Toffee Pudding with my UK chum and fellow blogger, Pollyanna Penguin). I have a few articles in the queue with RheumatoidArthritis.net that will no doubt filter through during this time and if major things happen, I might climb on my soapbox yet again. But I didn’t want you to worry about my going quiet.
We all need time to take a deep breath, count to 10, and look back before we look forward again.
While I’m away, I hope your life is good (and that you miss me). Thanks for checking in for the last 10 years. See you in August.
It’s been said that RA patients, along with others receiving a chronic illness diagnosis, often go through the five stages of grief. These stages were first described by psychiatrist Elisabeth Kübler-Ross in 1969 and include denial/isolation, anger, bargaining, depression and, finally, acceptance. While these stages of grief were originally meant to apply to death or dying they’ve certainly been applied to other serious situations, including long-term illness.
I follow a number of blogs, forums, and support sites where patients have loudly (in all caps) proclaimed, “I WILL NOT ACCEPT THIS DISEASE!” I politely beg to differ because I believe that acceptance is the very foundation of living your fullest with RA.
To read the rest of the article and understand why I feel so strongly, see the full post at http://www.rheumatoidarthritis.net, here: https://rheumatoidarthritis.net/living/acceptance-is-not-submission/
This is a sponsored post. Salix Pharmaceuticals compensated me for this post. All opinions are my own. Certain product information has been included to meet regulations.
Having been a communicator for most of my career, I understand the importance of words. Having been diagnosed with RA for almost a decade, I know that the words we use with our doctors are crucial.
Doctors are used to hearing about pain in a clinical setting. However, Salix Pharmaceuticals took that discussion out of the medical facility and put a very personal and graphic twist on the conversation. Salix brought chronic pain patient influencers and health care providers (HCPs) together at a recent forum to discuss opioid induced constipation (OIC) and specifically the features, benefits and risks of Salix’s OIC treatment for appropriate patients.
A linchpin of the discussion was the results of Salix’s survey done in partnership with the U.S. Pain Foundation (discussed further below). The patient influencers were asked to interpret the personal meaning of these statistics into artwork. The fact that these images were then shared with HCPs is, to me, incredibly powerful. This was a new way to see the issue; not a typical discussion with a patient. The artwork pieces were tangible interpretations of OIC statistics created by people who live with chronic pain. I believe this kind of interaction helps break down the communication barriers between HCPs and patients and can bring a much better understanding about OIC and its effects.
Patient influencers transformed statistics into meaningful artwork that was shared with healthcare providers.
While I’ve researched both pain statistics and the opioid “crisis” situation, I’ve only paid slight attention to OIC. I’ve had the occasional (really awful) experiences with OIC while on opioids and that’s convinced me to avoid the subject as much as possible. I do know that OIC is a significant issue for many people, complicating the lives of patients already living with chronic pain. I was therefore surprised to read some of the information revealed by the survey.
It’s hard to miss and even harder to ignore the headlines on the war against opioids. (Shouldn’t it be a war against addiction instead???) MedPage Today reported that the second bundle of opioid-related bills — 32 in this bundle, for a total of 57 — had passed committee and was on its way to the House for consideration.
One of the bills, The Overdose Prevention and Patient Safety Act substantially changes the confidentiality standards for substance abuse. According to the MedPage Today article, “Specifically, the act would allow anyone involved in treatment, payment, or healthcare operations — e.g., healthcare providers, health plans, and healthcare clearinghouses — access to patient information without first requiring a patient’s consent.”
I don’t even know where to begin.
This means we are stripping patients of a basic right to privacy about their medical records. And notice the word “anyone” would have access. When you extrapolate what this means, this is such a broad spectrum of access you might as well post the information on Facebook (which is looking to get into medical records, anyway).
Unfortunately, I think this merely a symptom of a much larger disease of which most of us are unaware.
At the end of April, Dr. Elizabeth Lee Vliet wrote an excellent article exposing major threats to patient privacy in wake of the disclosure that Facebook was exploring the medical records business. (This is worth reading.)
In addition to Facebook involving itself in our private lives, in 2014 the TARP (Troubled Assets Relief) act was passed. While this was a stimulus act to help the economy, it had a seemingly unrelated provision. In support of Medicare and Medicaid programs, it required physicians to adopt electronic medical records. (We’ve all had varying, interesting experiences with those.) What most people don’t realize that these records are then required to be sent electronically to the federal government — without further patient consent. As Dr. Vliet points out, this is patently unconstitutional.
The medical information compiled in the database would then be used to decide which treatments would be allowed based on such factors as age, weight, health condition, life expectancy, and “quality adjusted life years” (QALYs). In effect, your own medical data is then used against you to deny medical treatment you may need but the government decides is “unnecessary” or too costly.
But wait, it gets better.
On May 6, a 10-year federal government program was launched called “All of Us.” It’s goal is to compile your personal medical and lifestyle information. It isn’t just focused on medical treatment you may receive, as specified in TARP. This project seeks ALL of your personal health and lifestyle information: medical records, psychiatric records, drug abuse/addiction treatment, lifestyle, personal habits, your physical measurements such as blood pressure, weight, lab results, all health care visits, medications you are taking, AND even your DNA.
Theoretically this information is going to be used for research. Research for what? By whom? Will it be used as global data showing trends or will you be specifically targeted because your DNA indicates you may be at risk for certain diseases or personality traits?
When I think of all those HIPAA forms I’ve signed in countless doctors’ and medical facility offices telling me how they are safeguarding my privacy, I don’t know whether to laugh or to cry. I feel like Dorothy in The Wizard of Oz being told not to pay attention to the man behind the curtain. In this case, the man behind the curtain is the federal government accumulating, using, and sharing our personal patient data.
We’ve been — and are being — robbed and we didn’t even know it. Worse, there are no cops to call.
In writing this post, I have borrowed heavily from Dr. Vliet’s excellent article. I am grateful to her for the research and opinions she provided.