In March, I shared with you my journey of being told my prognosis was grim after 40 years of living with PPMS active, and how I had decided to take my life back bit by bit.  I decided that instead of being placed into a nursing home and getting my affairs in order, as my doctor suggested to my family, that I was making a different kind of “bucket list”.  This bucket list would consist of all of the things I would do or do again once I recovered function that I had lost.  Function I was told would never return.

The first installment of my journey took you through my decision process, and designing my new therapies to build new pathways around old damage.  It also took you along for the ride on a trip with my husband to California.  I was able to watch the sunset over the Pacific Ocean. Checking off an item on my list.

For an end stage MS & Lupus quadriplegic, it was quite a journey from Florida to California.  After getting the disappointing news from my MS Specialist that I am still too weak for Ocrevus, it was time to regroup and trudge forward.  It is now summer vacation for my boys and time to check another item from the list.  I was determined not to spend a third summer bed bound.

Our family has not taken a vacation in a hotel at a beach, since January of 2014.  I have always loved the beach!  My boys love it as well.  We just rarely get to take them.  It was time to make it happen again.  I knew it was not going to be easy.  The reason I was why rejected for Ocrevus, yet again, was that my lupus was so very active and several of my organs are severely impacted.  On top of everything my body was going through with the long list of diseases I have, my MS decided to rear it’s ugly head when it was time to leave on our trip.  Now, the weather called for thunderstorms each day of our stay.

Fort Lauderdale Beach, January 2014

Just packing for a vacation when you have two special needs kids with their own medical issues and you have end stage chronic illness can be a major chore for your caregivers.  My husband was already exhausted by the time we arrived in Daytona Beach, Florida.  We were staying at the Plaza  Resort & Spa.  It is a historic hotel with a long and colorful history.

The first evening, all the boys wanted to do after the rain ended was to spend hours in the pool.  I was happy to let my husband swim with them, while I rested from the trip.  Just being upright for the less than two hours it took to get to Daytona caused my legs and feet to swell up like balloons.

Missing out on the fun is never easy, no matter how many decades you have been living with a disease…that part never gets easy.  I just kept reminding myself that if I rested, I had a much better chance at making it onto the beach for the first time in years the next day.  The dread of wearing a swimsuit after years of weight gain from being bed bound and on major medications was enough to keep anyone from resting!

Our last beach trip several years ago.

Needless to say, my favorite leopard print swimsuit fit a little differently than four years ago in Fort Lauderdale.  It took my husband quite a bit of tugging to get me beach ready.  Sensing my embarrassment, he told me I looked just as beautiful as I did the last time I wore it…valiant effort.  Overriding my fear of being stared at on the beach, was my building anxiety regarding the process of them taking me onto the beach in 100 degree weather.

Staying at the Plaza, you realize very quickly that it does not win any awards for being wheelchair friendly.  With only stair access to the sand, we were forced to travel to the automobile beach access ramp to get me close as possible to watching the boys play in the ocean.  On the way down the aging ramp, my wheelchair tire became lodged in a large crack throwing both my husband and I over to the side.  My youngest son, who is autistic, started screaming and crying, “Mommy is going to die!”  My oldest son tried to calm him while my husband uprighted me in the chair.  We were all shaken and I was in horrible pain, but I insisted we keep going.

With his planning and great effort, Bernard was able to get me safely to the rented beach umbrella set far back from the ocean to minimize the distance they would have to take me towards our spot.  The shade never felt so good!  My skin hasn’t been in the sun for any amount of time in years.  Even with cooling products, the heat that day was unbearable.  The look on the boys’ faces seeing me out there with them made it worth every painful moment!

Even under the umbrella, I felt like I was melting!  For over two years I have not only been primarily bed bound in my bedroom, but the blinds are also always closed due to my lupus.  My butterfly rash starting making itself an appearance fairly quickly, even under that umbrella.

Zooming in that far back on the beach with only one hand that is functional, but has little sensation, is quite difficult…but I photographed the boys on their boogie boards!

Struggling to take photos, I failed to notice the changing position of the sun.  Having very little sensation in my feet, I didn’t feel the deepening sunburn on my quickly swelling left foot. 

Needless to say, it was not pretty by that night!  The boys had a blast in the waves, and even more fun digging in the sand.  Unfortunately, my time with them was all too brief.  It was time for the arduous process of getting me back to the hotel room.

The long trip back to our room was complicated by the closest wheelchair accessible door being locked, and one of the elevators being out of service.  Bernard and the boys had been taking the stairs thus far, due to the overcrowded elevators.  However, they could not take the stairs with me in tow.  After the elevator door opening five times to people being packed in like sardines, we gave up and looked for an alternative.  A parking garage attendant felt sorry for us in the heat and took us up to our floor on the service elevator.

While I tried to recover in our room, Bernard took the boys to hit the pool yet again (where do they get this energy)?!?!  After dinner and yet another thunderstorm, the hotel treated the guests to a movie shown on at the pool area that was visible from our balcony.  They were showing The Black Panther, a favorite of the boys.  Then, we were treated to a long tradition in Daytona Beach…fireworks off the pier.  We had a great view from our balcony.

The following day, it was more of the same…beach, thunderstorm, pool.  With the internet out at the hotel, Bernard took the boys to an amusement and waterpark area up the street within walking distance.  They had a blast, and it gave me a chance to rest.

On their way back to the hotel, the rains hit yet again and they were drenched upon arrival.  So what do you do when it’s raining and you just spent hours at a water park…hit the beach in the rain! (But of course, if you’re young and have energy that is to say).

It was from their trip to the amusement area that I received the most precious gift of the weekend, a “best friends” necklace won by my youngest son.  He proudly wears the other half of the heart.

After dinner, they hit the pool yet again!  “How do they do it”?  I don’t think I ever had that much energy, having MS and lupus since childhood.

The Plaza may not be very accessible, and it has its issues while under hurricane recovery construction, but it is still breathtakingly beatiful!

Monday morning came and it’s time to say goodbye to the beach…for now.  I sure will miss it, but know that it won’t be as long until we meet again.

If you’d like to listen to my radio show recorded while on this vacation, click the link below.