Now that I have been diagnosed with MS for almost two years, I am definitely more open with my disease. I can talk about my diagnosis and journey without getting upset, and as a result, I talk about it more freely. I mean the whole reason I started a blog was to try to help people be healthier and manage their diseases (if any). To do that, I need to talk about my disease and provide little tips and tricks.
Because I am more open about my MS, I get to meet a lot of people who either have MS themselves or have family members or friends with MS by simply just talking about it in regular conversation. MS really is a lot more prevalent than people may initially think.
One of my uber driver’s sister’s has MS. He picked me up from the Burbank airport after coming home from a trip to visit my best friend, Katelyn, in Phoenix, and we started talking about service and emotional support pets because I saw a cutie little doggie at the airport. He said his sister always travels with her golden retriever because the golden retriever is a service pet, which prompted me to ask what service the doggie provides. I am always curious since airlines have become more strict about travelling with their pets, and we currently have 2 doggies who have reciprocal separation anxiety with us (i.e. we both get anxiety when we’re apart from each other (I probs just made that up, but it should def be a thing)). His sister’s doggie happened to be a service animal for her MS, so the doggie is trained to react when she gets numbness in her legs and prevent her from falling over. Obviously, I was excited to hear this because I have MS. He told me all about her diagnosis and how she got sent from doctor to doctor until someone figured out what was wrong with her, and come to find out, my neurologist at UCLA, who initially diagnosed me with MS diagnosed her with MS. She was diagnosed over two decades ago; my neurologist is a seasoned doctor. Haha. But, my uber driver let me know how thankful his family is to my neurologist, and I realized how thankful I am for him too.
On another occasion, I was at a summer associate event for my law firm that I work for. I’m in the real estate group, and apparently, real estate lawyers really like to golf. I am not entirely sure why, but due to my group’s love of golf, we always take the summer associates out to a golf course that overlooks the ocean every summer. This year, I went to the restroom at the resort after a 9-hole round of golf to wash my hands before having happy hour with my group, and the soap dispenser happened to be empty. Obvs, I am not happy about this. I complain to the other girls in the bathroom and say something along the lines of “I can’t have any other germs because I can’t get sick when I already have MS”. In hindsight, this was an extremely weird thing to say, but it had been a long day and well, I said it. Anyways, a woman in the restroom quickly says, “OMG, my brother has MS.” We ended up talking in the restaurant after we finally got soap to wash our hands, and we exchanged numbers. Her brother is in a wheelchair, but she reassured me that this is because her brother was diagnosed at a time when there weren’t any disease modifying medications in the market that slow the progression of MS. All that were out there were band-aid types of medications that stopped the symptoms only. Regardless, we sometimes message each other back and forth about MS news and new research finds, and it’s nice to meet others who have been affected by the disease when you are out and about.
Lastly, I was on Instagram, and I posted an insta story about the MS Summer Soiree, which is the annual fundraising event I help plan with the Emerging Leaders Board for the National MS Society to fundraise for MS research. One of my friends on insta that I went to elementary and high school with messaged me about the soiree because of my post. She was curious about the event because come to find out she has had MS for over 10 years. We reconnected over our MS connection, and she joined the Emerging Leaders Board a couple months ago now. We have gone over the various supplements and medications we take to stay as healthy as possible and slow our disease progression. It is so nice to have a friend who literally knows exactly what I am going through on a daily basis, and I like to think I am a comfort for her, as well. But, in reality, through the Emerging Leaders Board, I have over 20 friends who either know exactly what I am feeling like on a daily basis. There really is a community of people out there dealing with the same battle, and it is comforting to know that there are people you can turn to for help, guidance or even just a vent session. All you have to do is speak up and out a little bit, and you will easily find them!
Also, I am always here to talk. Just email me at taylormarie@tobewellpreserved.org.
