If you or someone you know lives with MS, you probably don’t need me to point out that Multiple Sclerosis is a very expensive disease to have. According to the National MS Society, medications, particularly DMT’s, also known as Disease Modifying Therapies, which are used to try to slow your disease progression down are billed in the thousands of dollars every month, and in the hundred-thousands if you require an infusion treatment. I always share pictures of my insurance explanation of benefits paperwork because I want people to see the costs to keep me functional. As a country we need to lower prescription drug costs and better access to treatments. I advocate with the National MS Society for MS related issues but healthcare in America is broken, and affects everyone who lives here and needs medical help.
You are only one diagnosis away from needing the very best healthcare available to you. Fingers crossed it doesn’t bankrupt you in the process of treating the person you love fighting for their life to receive the treatment and care they need.
It’s not just financially that MS costs you, when you live with MS there is a physical and mental cost you have to always be aware of, while weighing the best way to use the limited energy you have.
We had been planning a trip to Hawaii in 2020 when the world shut down and we were finally able to go this week to make up for it. Maui is a 5-6 hour plane ride from So Cal depending what airport you leave from. That meant not only washing the laundry before we left and packing it all up for everybody, I also had to help the kids pack their entertainment bags for the plane ride so that we could all have a peaceful trip. We had to pack snacks. I had to pack various walking aids for the different scenarios I might run in to. I had to take my dog to the dog hotel. Keeping it all straight and getting it all done is mental energy plus physical energy and it all really adds up to get us ready for a 4.5 day trip.
Maui is PHENOMINAL. Book a trip now!!
We were staying in a condo with a kitchen so we bought food while we were there to BBQ and feed the kids when we knew we would be eating something they wouldn’t eat. We made it a game to buy enough but not too much that we would have to throw it away when we left. It’s hard to sticker shock Californians but all the usual food we keep in our fridge and freezer at home was at minimum $2 more per package. We weren’t fazed by the gas prices because it was the same in So Cal, that meant it was in the very high $5/gallon but still under $6.
We went to Ho’okipa Beach to see the sea turtles. Its’s a beach that has tide pools to explore and they had a huge amount of sea turtles on the beach and in the sea. There is a rocky path down to the tide pools. I went as far as we all agreed I could get and then the Hubs and kids went down lower to check them out. The water is different shades of blue than it is at So Cal beaches. Their sand is more pillow soft than grainy like our sand. We have more shells and they have more rocks in the sand. The water is warmer in Maui too.
While I was enjoying the view, I saw what I thought was a sea lion shaped rock but then it yawned. When I shared the picture on FB my friend said it was a monk seal and there are less than 1200 living in the wild, so I guess being stuck at the top wasn’t a total bust.
There were probably 20 turtles hanging out on the beach (in their VIP, roped off area so they could sun bathe.) We saw so many sea turtles playing in the waves right in front of us while the kids played in the water. It was truly a sight to see.
We had a variety of fantastic food while we were in Maui. We ate at Zippy’s. They are famous for their chili. I tried Spam there! (I’m a notoriously picky eater but while in Rome…er, Maui.) I also took the risk of an incredibly painful stomach ache and ate their Banana Cream Pie but I won that battle. We went to The Cinnamon Roll Place and I had a GF bun. We got the kids Hawaiian Shaved Ice from Beach Street. We ate Guri-Guri which is like an ice cream and snow cone meets gelato and apparently only available in Maui and nowhere else in the world. I had a Mai Tai anywhere that served them which was anywhere with an alcohol license. I unsuccessfully searched for a place to serve me a cocktail in a pineapple but no luck. Next time LOL
We got home and I slept for 15 hours. Be a friend and don’t ask me to do anything for the next month because I am so mentally and physically exhausted from too much fun and my body will need weeks to reset because it’s always give and take when it comes to MS.
There is always a cost, but trust me and go to Maui! It’ll be worth the recovery time.
Let me know if you find a place to drink out of a pineapple.