Can you help this person – her daughter doctor diagnosed

Dear all: Below is a comment that was posted on my “About” page. I am re-posting it here so that it gets more attention and hopefully to someone who can provide her some advice. I’ve also recommended that she post it on rheumatoidarthritis.net which has a great community of advocates, advisors, and patients who might be able to help. Please provide any assistance you can:

Hello, I really need some advice. My daughter just became a pediatrician and she is about to begin a fellowship in pediatric emergency medicine. She was just diagnosed with rheumatoid arthritis. She needs to go on a biologic but we don’t know how that will effect her professional goals. Is there any information on pediatricians that have RA?

Thank you so much,
Noreen

PS: I was diagnosed with RA 15 years ago. I never thought my daughter would get this illness.

Thanks for any assistance you can provide and, as always, thanks for checking in.

CBD: Experience/Advice, Please

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CBD products are now legal in Texas. Coincidentally, Creaky Joints (one of my more favorite sites) just published an article including a survey and personal testimony from patients who have used CBD products (oils, balms, ampules, etc.) to help relieve the symptoms of RA and other inflammatory diseases. (This is great info. You can read the article here: https://creakyjoints.org/eular-2019/medical-marijuana-cbd-usage-arthritis-patients-study/)

I’ve been on my current biologic for more than two years. About a year ago, I stopped MTX, but now I’m really symptomatic starting about two weeks before my infusion. Rather than going back to MTX, I’m considering trying CBD. And while I believe strongly that various supplements can be very beneficial, I am also cautious because they’re not as tested or regulated as prescription medications and there is not as much documentation between the interactions with other medications.

While I’m going to chat with my rheumy about it at my regular appointment next week, there’s nothing like real patient experience. So I’m asking for advice, shared experience, whatever you are willing to contribute to my information gathering.

And while I know from other research that some patients have resorted to “under-the-counter” methods of using CBD or marijuana for medical purposes, I might suggest that you only post legal activities.

Thanks, in advance for your help, and thanks for checking in.

The 2019 Trip – Final Chapter – Amsterdam

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It’s not the years, it’s the moments …

When you look back on life, you realize it’s not the years you remember, it’s the moments: the first kiss, birth of child, death of a parent, a sudden moment of clarity. So I don’t want you to think that the cruise portion of the vacation was awful. When I look back, there are some moments that I will definitely remember with happiness. (And let’s face it, complaining about a luxurious, transatlantic cruise is truly a first-world problem and more than a bit petulant.)

But the crowning jewel of the 2019 trip was definitely the five days we spent in Amsterdam.

Amsterdam

We first visited Amsterdam last year headed home after visiting Britain and Germany. (It was easier to fly home out of Amsterdam than Berlin and since we’d never visited, it seemed like a good idea.) Fell in love with the city and the fact that our cruise this year ended up in Amsterdam was a real plus for us. It gave us the opportunity to spend some time exploring the city. Amsterdam is a wonderful blend of old world charm with new world architecture and attitudes.

One of the great things about Amsterdam is its well-run, efficient, inexpensive public transit system. You can roam all over the city center as well as much of the outlying areas with little effort or expense. In addition, English is widely spoken in the city so it makes it easy to enjoy the city without struggling with either the language or transportation.

Our hotel, the Sir Adam, was modern, quirky, conveniently located across the canal from Centraal Station, and had a superb staff.

The crisp spring days in Amsterdam were wonderful, especially after the two weeks of stormy, rainy weather and rough seas on the cruise. It allowed us to really get out and explore the city and enjoy the great venues and food available.

I’m not going to exhaust this post with words — I’ll let the pictures do the talking. Let me just say, that the wonderful time we had in Amsterdam (including an amazing birthday dinner for me), balanced the scales for the entire trip.

(As before, you can click on these thumbnails to see a larger picture.)

The hotel

Great food in Amsterdam

Sights

That’s all folks …

The only thing I can add at this point is that my RA was well behaved throughout the trip — even during the rough seas and the many miles walking around on land. I’m grateful for many things about this vacation and that ranks right up there at the top.

I hope you enjoyed this glimpse into the trip. There’s no way a few posts and pictures can do justice to all the wonderful things we experienced, but I’m glad you let me share them with you.

Thanks for checking in.

 

The 2019 Trip – Part Three

Land ho!

So at this point we’ve been on the ship for 10 days. I missed the entire country of Ireland (although I have an Irish immigration stamp on my passport — we cleared immigration on board — and a great Ireland sweatshirt my husband bought me). But now that we’ve successfully reached the European mainland and I’m mostly over the stomach issues, things are looking up!

Le Havre / Honfleur

Le Havre is the port city that services Paris. As we’ve previously visited Paris and it’s about three hours (one way) by bus into the city, we opted for a shore excursion into nearby Honfleur — a lovely seaside town with an iconic church (for my architect husband). I can’t tell you how wonderful it was to actually be ashore! I would say “dry land” but it was raining, sometimes pouring, so the land wasn’t exactly dry. It was a pleasant drive through the French countryside, but we quickly ditched the guided tour (which we couldn’t hear anyway) in favor of a small bistro until the rain passed. We had a lovely time dodging rain showers, dashing into cafes to escape the rain. (Click on the thumbnails below for a larger image.)

Tilbury / London

The next day we docked at Tilbury, south of London. Since we visit the UK often, we planned to take the train from Tilbury into London and “do our own thing.” Research told me the train station was only a mile or so from the cruise terminal and that there was bus service as well as taxis. We learned later from a local that our ship was the largest ever to visit the port and the town was in no way prepared for the amount of passengers disembarking. From what we could tell, there were only about five taxis circulating between the cruise terminal and the train station. The bus stop was very close, but there were more than 100 people waiting for the bus with no idea of when it would show up, what it cost or how many people it could carry. After more than 30 minutes putzing around trying to figure out how to get to the train station, we just started walking. (Or I started walking and my husband (wisely) followed.) When we got to the station there were almost 200 people in line to get train tickets. (Should have gotten mine on line.) The poor locals were completely overwhelmed by the crowd. At any rate, we finally prevailed, got our tickets, and made it to London. There we made several stops including a wonderful lunch at Il Vicolo restaurant — a lovely family owned/operated place close to St. James Park.

The return trip wasn’t quite as hazardous. We already had a return ticket and made it back to Tilbury without issue. However it was pouring down rain. A group of us huddled under the bus shelter until we found a number and called for a taxi. It took us all back to the ship where upon my husband and I proceeded to consume more than our share of Long Island Ice Teas.

Zeebrugge / Bruges

The following day we were in Zeebrugge, the port that serves both Brussels and Bruges. Rather than the longer trip into Brussels, we opted for a shorter excursion into Bruges (the European spelling is Brugges). I’ve wanted to visit since I saw the move In Bruges with Brendon Gleeson and Collin Ferrell. (If you like dark, quirky movies, you might enjoy it.) This was our last port of call before landing in Amsterdam the next day where we would spend another five days.

Did I mention that when we got back from London, we over indulged in cocktails when we got back on board the ship? Well, during the night between London and Bruges, my husband either suffered (rather severely) from the alcohol or actually got the food poisoning/stomach flu. Deciding it was too much booze rather than illness, we loaded him up with anti-nausea/everything meds and, even though I told him it was a very bad idea, off to Bruges on the bus we went. (Needless to say, we didn’t report his symptoms to the medical staff.)

It was still a bit rainy and a bit muddy in places from where it had rained, but I truly loved Bruges. My husband was not feeling 100% but he was a trooper and we managed a wonderful walking tour followed by a short canal cruise. The real downside came when my husband stumbled backward getting out of the boat and pulled a muscle which bothered him to some extent for the rest of the trip.

Stay tuned!

So this was the last port of call for the cruise. The next day we disembarked in Amsterdam, the final part of our journey. As a preview, it was sunny, the food was wonderful, the hotel and staff were great and we were pretty much over all the health ailments.

See, I told you, it does get better!

 

The 2019 Trip – Part Two

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A tale of adventure in four parts.

One of the things I appreciate most about Norwegian Cruise Lines is their dedication to cleanliness and sanitation. Before you step on the gangplank the first time, and every time you go into a restaurant, there is staff with hand-sanitizing spray and hand sanitizers throughout all the public areas. The crew doesn’t shake hands, opting for either fist bumps or the Asian-favored bows. Special care is taken with the health of their passengers. I’ve cruised with them a lot and I’ve never had an issue.

My husband noticed it first. While there are daily reminders in the cruise announcements to passengers to wash their hands and use the hand sanitizers, my husband commented that we seemed to hear those more often. I at first blew it off, then I noticed the increased announcements as well.

The self-service buffet was suddenly no longer self-service (which brought the already congested meal service to a screeching halt). Condiments such as salt and pepper along with silverware disappeared from table tops and menus were suddenly printed on plain paper and disposed off after use. Doors to the public bathrooms were propped open so people didn’t touch door handles. An announcement was made that although the Library and Game rooms would remain open, passengers could no longer check out books or games.

People on the ship were getting sick.

So at this point, it’s Friday. We’ve been on a rough, rainy cruise for five days with two more days to go before our first port of call – Cobh, the port that services Cork, Ireland. About midnight Friday night/Saturday morning, I got really, really ill. I’ll save you the nasty details, but it was severe. I couldn’t sip water or even turn in bed without triggering another horrible episode. This went on at least every half hour until 8:00 am when I called the medical staff. They advised me to stay in the cabin (which was no problem since I could barely get out of bed) and they would come to me. About an hour later, the doctor and two nurses showed up to evaluate me. They gave me a blessed injection of Zofran (a powerful anti-nausea drug) along with some other meds and Gatorade mix. The doctor told us that at that point, about 60 passengers had reported ill, but he said that after the first report, the next 20 cases or so showed up immediately, thus the measures to contain the spread of the problem.

Shortly thereafter there was a knock on our cabin door. My husband (who felt fine) answered the door and it was guest services. The woman asked to see our cabin keys, which my husband handed her. She then stated we would get them when medical released us which wouldn’t be for at least 48 hours. Both my husband (who was not sick, but assumed to be exposed) were quarantined in our cabin. We technically could leave our cabin, but since we didn’t have keys, we couldn’t get back in. (Well, not “legally” anyway.) We were limited to what we could order off room service (which never got an order right). Our food, when it showed up, was served on disposable dishes with plasticware. My husband ordered something that needed a sharper knife to cut and he got a plastic knife. I didn’t care because I could barely sip broth, but I felt awful for him. And once it took more than two hours to get an order of ginger ale and broth. It’s hard to force fluids when you can’t get them delivered.

That was Saturday. On Sunday, we were in port for the first time since sailing from New York the previous Sunday.

I’ve always wanted to visit Ireland. I’m part Irish on my mother’s side and have several first-generation Irish friends. In addition, there is a fellow RA advocate (https://thegallopinggrandma.wordpress.com/) who lives there. And the weather was amazing! After a week of storms and rain and waves, we were nestled into the sunny, peaceful harbor. But we were quarantined and couldn’t even leave our cabin and get out on deck. Fortunately, our cabin had a balcony and we were docked on our side of the ship, so I at least got to SEE Ireland for the first time.

I think someone who was quarantined not only left their cabin, they tried to leave the ship. The captain made an announcement that any quarantined passenger who was caught outside their cabin would be put off the ship at the next port.

On Monday, we docked early at Dun Laoghaire which serves Dublin. We weren’t supposed to be released from quarantine until 3:00 pm, but after a discussion with the nurse, assuring them I had no further symptoms and my husband had never had any issues, they lifted the restriction around noon.

Anchored off Dun Laoghraire

From the ship, it was about a 1.5 hour trip into Dublin (1/2 hour for the tender from the ship to shore, then about an hour to catch the train and travel in). I was so exhausted from being sick and living on broth for three days, I opted not to go ashore. If we’d been docked on land, I probably would have gotten off the ship and at least walked around, but I wasn’t up to a bumpy tender ride, a walk to the rail station and a swaying train ride even before we got to Dublin. My husband, however, did take advantage of being on dry land and went into town for a couple of hours. I enjoyed some fresh air and sunshine on deck and hanging out on our balcony.

The next day was another day at sea as we sailed toward Le Havre/Paris. It would a total of 10 days before I would set foot on terra firma.

Stay tuned … it gets better! Hon Fleur, London, Bruges and Amsterdam are coming up.

 

The 2019 Trip – Part One

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It was a dark and stormy cruise …

Let me just preface this post with a note that things do, eventually get better. They just didn’t start out that way.

We had the trip planned for the better part of a year. Starting with a Saturday night in New York, then catching a transatlantic cruise on the Norwegian Pearl from New York to Amsterdam — a 14-day journey with stops in Cork (Cobh) and Dublin (Dun Laoghaire), Ireland; Paris (Le Havre), France; London (Tilbury), England; and Bruges/Brussels (Zeebrugge), Belgium, before alighting in Amsterdam where we would spend another five days.

Either from life experience or perhaps the streak of superstition I have, I’ve developed a belief in omens. I have found that things that start off track (projects, relationships, jobs, etc.) usually have trouble ever meeting their potential. So the screaming toddler that sat behind us on the NYC flight who yelled at the top of her lungs and kicked our seats for 3.5 hours should have given me a hint how much of the trip was going to work out.

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Can you help this student with a research project

I wanted to pass along the following information from a fellow RA patient who happens to be working on a research project for graduate school. If you’d be willing to participate, please contact her directly:

I am currently working on a capstone project for graduate school on inflammatory and degenerative forms of arthritis. I am looking for candidates to interview for a research project and would be so grateful if you were willing to participate. It would consist of one main interview and follow up questions as I dig further into the project.

My target audience is anyone 18 to 40 years old with an inflammatory or degenerative type of arthritis and take a prescribed medication to help with their treatment plan. If you are interested or know anyone that would be interested to help or are simply curious as to what I’m working on please let me know. The best way to contact me is at this e-mail address: rbrand21@student.scad.edu.

Thanks for any help you can give her and thanks for checking in.

You haven’t heard from me in a while because …

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Okay. I’m guilty of neglecting my blog and, by extension, you. But the fact is, I’m doing well so I’ve been busy off doing other things. Sorry. (No, not really.)

I recently spent nearly a week in London with some other amazing advocates from the US, UK, and Europe at a patient advisory panel and I’m going to have the opportunity to provide the patient’s voice to a much, much wider audience in the near future.

I’ve been working part-time and am about to take on a second client. It’s not a lot, but it’s enough to keep my brain working and I get to interact with some amazingly bright, talented people. Plus it brings in a few bucks to supplement the bit of fixed income I get every month.

And in a month or so, hubby and I are going transatlantic on a cruise for 15 days winding up in Amsterdam where we’ll spend another few days before coming home.

Will spend my birthday in Amsterdam which is quickly becoming one of my favorite cities.

On the RA front, I’m doing pretty well. I’ve been on my current treatment for more than two years (I think that’s a record). I went off methotrexate last July and I’ve happily stayed off of it since then. I think I would actually feel better with the methotrexate and more frequent infusions, but I’m happier with less medication and I’m doing well. Today I walked more than a mile for the first time in ages.

I tell people that I’m doing well, for me, which is true. But with me, there is always something going on. We’re in watch mode for a spot on my mammogram and some marginal labs. But neither are interfering with how I feel and I’m not going to worry about them until I have something to worry about.

So I’m sorry I’ve neglected you but glad that there are good reasons. I hope you have good reasons to think about things other than RA as well. Thanks for checking in.