My 3-Day Vacay in LA With Spondyloarthritis
I recently returned from Los Angeles, a valid business trip, but my daughter and I also chose to see the sights as well. We flew in Sunday for Monday-morning business pertaining to her studying abroad in Scotland. The registry process is very complicated and when ready to apply for the Visa in Arizona, no appointments were readily available here - thus warranting the trip west.
We decided to make it a personal trip as well and took a small mother-daughter vacay together prior to her leaving the country for a year. As leery as I was traveling with spondyloarthritis (SpA), the trip went over well for several reasons - having support, getting treatment, bringing assistive devices, and addressing my mental health.
I'll start by saying that the amount of anxiety I have had preparing for this trip to LA has been excruciatingly crushing. The enormity of the situation is that I am not a traveler, nor do I leave home for very long when I do venture out because of my severe issue with full body pain and never-ending enthesitis. The plethora of questions that beat me down, from “will I be okay on the flight?” to “How will I enjoy the sights?” plagued me day and night. But for me, and my daughter who helped me succeed in this venture, it was a trip to remember. I am over the moon with how I managed my disease while being away from home for a few days, having very little repercussions or onset of flare due to overdoing myself.
Addressing mental health
The month prior to our travels, I'd begun to address my mental health. I was not feeling emotionally stable. Going on a trip was the last thing I wanted to do. The difficulty tackling the anxiety and depression that tags along with chronic disease is right at the top of disability when it comes to this disease.
Spondyloarthritis can surely have its way with you if not managed well. It is obvious to those around me who see me day to day that I've kept the depth of my nervousness and sadness a secret for a very long time. I've not spoken of it nor addressed it too often, which makes it and me hard to deal with when coping with my ill health.
With some help from a psyche nurse and counselor, on low-dose medications that seem to be working, I've finally stepped out of my dark room and into the sunlight. I think this is one of the main reasons this trip went as well as it did. No bickering, no attitude, no fear, no caution...just throwing it to the wind and having fun!
Bringing along an assistive device
Tagging along with us to LA was my Alinker assistive walking bike, BeeBee (short for Bumble Bee). As difficult as it was to schedule this trip, taking my bike had actually been fairly easy and warranted. There was so much trepidation involved in taking this with me.
The fear revolves around the idea of my disability, and how people will see me when on a 3-wheeler zooming down the concord to my flight. Will they see me as faking my illness, as I look well, or treat me differently and not assist when needed? You see, I can walk maybe 10 minutes, but after that, I am done for. My one hip is replaced while the other needs to be replaced. I have an ankle that is on its way to a 3rd implant and my full back and pelvis from inflammatory arthritis are a great source of major discomfort while ambulating.
I even got on public transport with BeeBee from the airport to the car rental business. It was wonderful to have an assistive device on hand to help me keep up with my 20-something daughter the whole trip.
Support pushing onward and upward
My daughter has been such a tremendous gift to me, another reason the trip ended up on a great note, especially on this health journey. She has inspired me, aided me, and is my one-person pep rally when it comes to overcoming this disability.
She was the one who said: "Please come with me to LA. We'll do 2-3 days of fun stuff. I'll help with BeeBee." Not only has she pushed me onward and upward, but she has also always been there should I begin to slow down or need help, especially getting the Alinker wheels off and placed in the back of the Uber or car rental.
Every day and night she'd asked, "How are you doing? Do you need to rest?" And, because she was there helping me should I need it, I didn’t need to rest. I was entirely capable of enjoying the Santa Monica pier and beach for hours, having dinner out a couple of nights, shopping in LA, as well as going on 2 full-day excursions to the Los Angeles County Museum of Art (LACMA) and The Getty Museum, all without suffering through as I would have if I only used my cane. The support she has given me is amazing!
Ending daily life with dis-ease
Successful treatment for SpA with Xeljanz since early April is another reason this trip to LA was a triumph. The flare that plagued me for 5 or so years has finally ceased. I had a very hard time finding a treatment with positive results, going from DMARDs to biologics to a combination of medications and supplements.
Due to having a hard-to-treat inflammatory disease, enthesitis has been controlled where prior I felt as if the very joints were on fire and eternally bruised, filling life with dis-ease. I’ve finally had positive results taking this biological medication once daily.
I have regained about 30-40% of my mobility back where prior to starting it I was most times crippled ambulating even just around the house or mostly bedbound in severe pain daily. A victory in my eyes, this trip went off unhitched and unbridled by sour emotion or harsh moods due to pain or mental anguish.
I really enjoyed myself with my daughter and had very few issues on this trip to LA, something I never thought I hear myself say when planning it. Five days later, I only have slight orthopedic pain in my spine and neck, as well as a hip and ankle that constantly trouble me, but the enthesitis and flare I've struggled with from spondyloarthritis haven't bothered much me the past month.
I am reminded of the life I had before, the active productive life that I thought was lost forever. And, I believed vacations were lost to me from diagnosis on. I can say I am rather tired, as I am not used to the “go, go, go” with a vacation, but it is to be expected. The suffering is nowhere near as exhausting and troubling as the pain and malaise felt in the last 5 years. Being on the upswing, I hope more vacays are in the future.
How are you feeling lately? Have you given up on vacations due to pain from AxSpA? Do you have hard-to-treat spondyloarthritis? What are you using currently?
How often do you have to cancel plans because of AxSpa symptoms?