I have some insights on what you can expect after being diagnosed with fibromyalgia. These are my thoughts on things that are part of the fibro experience that are rarely discussed when talking about the condition.

1. Diagnosis isn’t as helpful as you would think (or hope). Once you get the diagnosis, you can access certain resources and support groups. BUT, you have to remember that there aren’t many well established organizations or support structures for fibromyalgia patients: overall, the resources are lacking. So prepare yourself for a lot of work, even after you’ve gotten your diagnosis.
2. Focus on rebuilding instead of repairing. This condition isn’t like healing from the flu or a broken bone: repair isn’t really as comprehensive as one would hope.
3. Healing probably won’t come from standard medicine.
4. Nervous system care should be your focus, in most cases.
5. Most severe flares are preventable.

Want to hear more about what I’ve learned? Here’s the video I did on this topic:

A few months ago, I spent a couple of days in New York City, Here’s what I did, and what I recommend you do, to have a fabulous, unique weekend in the city.

Day 1: Arrived, Check In, and Popping Into Patent Pending

I took the Amtrak to the city and got off at Penn Station. I walked from the station to my hotel, and it took about 20 minutes. If the weather is unpleasant, I would have taken an Uber. On second thought, I should have just gotten the Uber, just for the sake of avoiding the throngs of tourists that were walking in the same direction. It wasn’t a particularly pretty day in the city, but it was dry and I didn’t mind being stuck behind some slow moving people. If you’re feeling patient, or it’s a beautiful day and you want the sunshine, the walk is comfortable.

I stayed at The Manhattan at Times Square (The Manhattan) for my visit. The prices were reasonable for that weekend, and the location is fantastic. Check in was smooth but, since I arrived a bit before my room was ready, I had to wait a bit, which I expected. It took a while to hand off my bag to the bellhop, because the hotel was swamped with guests. Despite the overwhelming amount of guests, the staff remained polite, professional and as efficient as possible. I was impressed with how well they handled the overwhelming number of rude, impatient guests (I witnessed several people behaving poorly in the lobby, both when checking in and when handing their bags to the bellhops).

I waited in the lobby for a bit, then I walked around to see what was nearby. Because this hotel is right at Times Square, it puts you close to a lot of shops, restaurants, and some great sites. I walked for about 30 minutes before I returned back to the hotel. I got my bags and went to my room. The hotel is older and has some grand touches that give it an elegant feel; that being said, the rooms are a bit antiquated and could use a lot of updating. To the hotel’s credit, my room, and every other space I saw, was very clean and comfortable. I have no complaints about the accommodations, and would certainly return.

I was a bit spent from my travel, so I ordered food delivery. I got my favorite cuisine for when I’m in a major city: Malaysian. Yes, I used to be an Ethiopian-food-delivery-girly when traveling (and if I have more than three days in a city, Ethiopian food *will* factor in at some point). But after having laksa noodles for the first time in London last year, I quickly became a fan of Malaysian food when I’m away. Unfortunately, there are no Malaysian restaurants where I live, so I either have to make my own laksa, or wait until I travel to get the authentic stuff. I ordered from The Loop and it arrived about 30 minutes later. I got curry laksa and coconut rice. I was pleased with my order and would definitely try them again.

I rested in my room for a bit, then decided to venture out. I took an Uber to Patent Pending, the Nikola Tesla-themed bar in the Radio Wave Building where Tesla once lived. The bar is notoriously busy, so making a reservation is recommended (those that don’t reserve a table will be given a firm time limit for their dining experience). The drinks are all very unique and perfect for diners that want something that they can’t get anywhere else. I ordered a cocktail that I can’t remember and, thanks to the mood lighting of the bar, I couldn’t get a good photograph of the menu to remember which drink I tried. However, the website shows the current cocktails available. I ended up trying the charcuterie board which was okay but forgettable. I liked the theme of this place but I’d only return if I had a science/math/metaphysical friend that really wanted to go. I have had better snacks, drinks and ambiance elsewhere.

A door or two away from Patent Pending was Cosmico, which was livelier, had better dining options, and a friendlier staff. I had a cocktail there, and I was thrilled to end my night on a fun note.

Day 2: Getting Out and Having Fun

Because the Manhattan was so close to major attractions, I was spoiled for choice. Unfortunately, it was raining on this day, but my hotel didn’t have loaner umbrellas, so either make sure you’ve packed one in your luggage, or be prepared to buy one. Of course, you could end up at The Warwick like my friend did, and then you can just borrow an umbrella for the day.

I decided that a quick breakfast would be the best option, so I went to Krispy Kreme (located a few blocks from my hotel) and got a donut and coffee. Not exactly the breakfast of champions, but certainly a delicious start to my day. I then went to the Museum of Modern Art, also walking distance from my hotel. I spent the day wandering around the exhibits, oohing and aahing over some of my favorite masters (Piet Mondrian is a one of mine). I took the steps throughout my museum tour, so it wasn’t long before I was hungry again. I ate in the museum cafe, and it was delightful. The menu was excellent: just enough choices and all well prepared. The service was great, and it was a fantastic way to refuel before going to my next step.

I walked for a bit longer at the hotel, then it was time to go back to the hotel to get ready for the evening. I showered and changed into something a little more elegant, since I had reservations at The Brandy Library. While I had seen the lounge’s website, I still wasn’t aware what kind of menu they’d have outside of drinks (the menu is published, I just didn’t think to look at it before my visit). When I got there, I was pleasantly surprised by the dining options that would accompany my drinks. I had the Macallan 15 and Bladnoch whiskeys, and followed with a delicious short rib entree. I had an excellent experience at The Brandy Library. The whiskey expert that served me was knowledgeable, friendly and provided top tier service. I cannot recommend this lounge enough!

After the Brandy Library experience, I went back to my hotel and called it a night.

Day 3 – Let’s See What’s Happening, and an Evening Concert

This day, I wandered around and figuring out what was nearby. I didn’t have any firm plan until later in the day. My day started at Krispy Kreme again, but this time, I opted for coffee only. Then I wandered around, checking out some of the stores near the hotel and watching the massive salsa lesson happening a few blocks away. After exploring the surrounding area, I took the subway to see what was happening over in Greenwich village. It was a quiet day in this notoriously quirky neighborhood, but I did stop to eat before I did a lot of walking. I grabbed an egg and cheese sandwich at a nearby diner (I wish I’d jotted down the name of this place: the sandwich was really good). Then, I went in The Red Lion, where I heard some live music and just enjoyed the bar vibes. After drinking a beer and chilling out, I made my way back to my room, to get ready for my evening.

I had tickets to see Janiva Magness at the Iridium on this night. I was delighted that the venue was right around the corner from my hotel, so I didn’t have far to walk on this drizzly day. Janiva put on a spectacular show! The food at the Iridium was fine: not memorable, but okay for the event. I enjoyed the music then took a leisurely stroll back to my hotel. I packed my things up and got ready for my departure the next day.

Day 4 – Time to Leave

I had a fun-filled few days in New York, and alas, it was time to go home. I checked out of the Manhattan and caught an Uber to the train station. I arrived quite early so I was able to relax a bit as I waited. Then, it was time to leave. It was a fantastic weekend and I can’t wait to return!

Additional thoughts:

I’m going to create a guide for planning the perfect trip to New York. I’ve been a number of times but every time is something completely new and different, and I LOVE that! Other than those lists full of tourist traps and generic advice, I’ve never seen a guide that reflects a bespoke New York City experience. So look out for that guide soon, with my recommendations for creating a trip to NYC that will exceed all of your expectations!

Though I loved writing, I took a long break from it. Part of that was due to more responsibilities offline, but the other part of it was a lack of inspiration. I found myself writing but not feeling connected to anything that I came up with. I wish I had been more satisfied with what I created, but I’m also pleased that I didn’t publish anything that felt uninspired or “flat”. I’d rather wait a while, and make sure that what I’m writing feels great, than to publish mediocre work.

Recently, the focus of my writing has been journaling. It had been years since I wrote in my journal regularly: I had fallen out of practice due to severe pain in my hands and wrists. At one time, I was once able to easily jot down my thoughts, filling 10 or more pages quickly. But then, during the course of being treated for fibromyalgia, there were several years where I couldn’t write profusely anymore. In fact, there was a point in time where I was unable to write more than a half page – a full page, at most – in a 5 inch by 7 inch journal. I was crushed over my inability to journal as much as I liked, and, even after doing physical therapy and building up a bit of endurance, I was reluctant to test my ability to write extensively.

I can write a bit more extensively than I did when the pain was at its worst, but I still have some issues with writing (namely, the only way to write comfortably is to write a bit messier than I used to). That being said, I’m still happy that I’m better than I once was. So for the time being, I haven’t been working on anything that I intend to publish: I’ve just been getting myself back into the practice of using my journal to sort through my internal dialogue. Of course, I’ve been writing on this blog, too, so that’s been great for helping me get back into a writing routine of sorts.

Are you working on anything right now? I’d love to hear all about it!

Happy Fibro Friday! Can you all believe that it’s been 5(!) years since I got my fibromyalgia diagnosis. In this time, I’ve learned so much, and I can happily say that my symptoms are minimized and I have pretty much gotten my life back. I wondered if I would ever get back to “normal”, and I still long to be completely pain free. But I have to say, I feel so much better now than I did years ago. And for that, I’m thankful.

Looking forward, I’m excited to try new treatments, devise new approaches, and figure out how to best care for myself. I want to restore myself to excellent health, and I believe I’m closer to that goal than ever before. My progress up to now has been great so I’m optimistic that I’ll be able to get exactly to where I want to be if I continue working on my approach and tweaking my routine.

For my fellow fibro family, how have you all been? Have you been feeling better, and if so, what have you adjusted to make that possible? And if you haven’t been feeling great, is there anything I can do for you all to help you? If so, let me know in the comments. I’ll talk to you all soon!

It feels amazing to step into a new year. I love the energy of turning the page and starting new chapters. You all already know that New Year’s Day is my favorite holiday, and for that reason, I’m always so happy this time of year.

I’m excited for 2023. Truthfully, I feel this way at the beginning of every year. However, the past few years – while good – were not full of the buzz and hope that I usually experience at the beginning of the year. I remember feeling happy, but not “buzzy”, at the beginning of 2020. Of course, my ongoing health concerns probably factored into that, but March 2020 changed the world, and it somewhat justified my more neutral emotions as respects the New Year.

But 2023 feels different. It feels like 2015, the year I made my first vision board. This was also the last year of my college program, and the year that my marriage ended (the divorce was finalized nearly two years later). The ending of huge commitments signaled the beginning of my next great adventure. I don’t know that any of my current big commitments will end this year, but I certainly feel that there will be some space opening up in my life, giving me room to embrace things that delight me and move me closer to my desired life.

All of that being said, this year has such a hopeful energy, and I’m looking forward to seeing what unfolds for me.

I’ve missed this blog so much, and I’m ready to start writing more regularly over here. I hope you all will continue to walk with me on this journey. Cheers to 2023, and cheers to us!

I published a new book! I’ll have more updates tomorrow: stay tuned!