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I am a mother, a caregiver, a taxi driver, a shoulder to cry on, a personal chef, a laundromat, a counselor, a life coach, an alarm clock, a tutor, an ATM, and a maid at times… I am simple, I am ordinary, I am an only child-a daughter, I grew up where it rained everyday and the grass was always green (amongst other greenery), I was a teen mom, I graduated college, I went to work everyday, I cared for my sons, I cooked dinner every night, I tucked in my dogs daily and kissed everyone on the forehead goodnight….  I did everything right…. Right?

I am Nicole DeCosta and I have MS-RRMS to be exact – nice to meet you!

 

I started this blog as a way to release some of the things that have been weighing on me and my mind once I received some very unexpected and life changing news, to purge myself of the over thinking (stewing and brewing as females tend to do) that can send even the sanest person-into insanity. I felt this blog would help me to remain my most authentic self in a world where identity and authenticity is often overlooked for the flashing lights and glitz. Where denial and self pity supersede values and dedication. When I thought of an MS round table approach of sharing (AKA “blogging”-thanks millennials), my vision was that we all (MS or not) could come together and talk openly about our “not-so-simple-anymore” everyday lives. To spread hope and awareness for those in similar situations as ourselves as well as to those who may be the support system for someone with MS and most of all to those who “think” they know about the MS monster-but in reality-probably have no idea. To allow positivity to shine through even some of our darkest days.
So let’s ask ourselves, what exactly is multiple sclerosis? I’ve always heard that word, so even coming from a small little island in the middle of the Pacific ocean, I’ve still at least heard the term in my almost 35 years of life. But I never really knew what it was or the depth of what it entailed-I mean shoot, till today, I may barely even know how to spell it without Siri to help spell check me.
MS is definitely one of those things whether you refer to it as a disease or an illness or a sickness, that you don’t really know anything about even though you have heard the word or the term before, and people don’t really care to learn about what it is until it touches them directly or touches a loved one. This is unlike cancer which is now such a household term everyone fears this monster, everyone knows someone that has dealt with this monster, you can almost look at someone and know that they may be dealing with this monster… um ya, MS is the complete opposite (invisible monster, remember?). And once this does happen, once MS does become a permanent uninvited guest in your universe, usually you also become the opposite of what you spent your whole life being and that is… All of a sudden you are now an MS expert and everything that can be googled-will be, every person who needs enlightening-will be, and every statistic that is in existence will be readily available ammunition for the next time you have to talk to someone and explain to them what’s going on with you, despite the dumbfounded look they are giving you while they are staring at you looking exactly the same as the last time they saw you…. (but you don’t look sick?!?!)
So this is me in a nutshell, I know what I have and I have done as much research as is readily available (my doctor just loves that) and I will continue to do so because of my proactive personality (aka control freak/controlling bitch/OCD/whatever pet name fits). I have good days and bad days, I have good mornings and bad mornings, I have nights where I can walk up my own stairs without assistance and I have days where I have to abandon my half full grocery cart at the grocery store because I just can’t go on anymore. I’m at the point where I am still in a very much so “need to know basis”, so my boss at work knows and a couple of my coworkers, and my immediate family and the people around me daily and maybe one or two of my girlfriends. But for the most part I am not at the point where I am broadcasting what’s going on with my health as if it’s a new little black dress I bought for next Thursday’s cocktail party. So there has been no mention of it anywhere on my social media (or however people choose to make announcements these days) and when you see me, you do see Nicole as you always have and that’s why it may be a little bit harder to sympathize with the fact that I’m sure I have been very flaky over the past six months, this is an invisible illness so I’m sure I don’t look sick at all, right? I’m sure even when you could nail me down for a conversation-in person or on the phone-I do not seem all there at times, I’m sure I’m coming off as a very bad friend right now and appearing to be very self-centered but rest assured that I  do and did have a lot going on in my own head and world and no one has a handbook of how to deal with crisis situations correctly, so I am doing the best that I can and one day at a time. One day (I’m sure after you read this), it will all make sense.
In basic terms, MS is an evolving and unpredictable lifelong terminal illness that affects the central nervous system. There is NO cure. MS can share some of the effects you would have after a very long and late night with alcohol. The only difference is that you may wake up from your adventurous night with alcohol feeling perfectly fine and normal, well when you have MS there is no waking up from blurred vision, slurring, nausea, reaction delays, or speeding up the crooked walking. So basically MS creates difficulties for an individual which makes simple and necessary motor skills such as walking, seeing straight, and using your hands and legs seem like it is all of a sudden some of the hardest things you have had to do… EVER! There can be similarities in people with MS but the reality is that almost every person has their very own unique journey which is what makes them unicorns-to me anyway. The nerves that run throughout the entire human body are insulated by a sheath of myelin, this is the same idea as if you were to insulate water pipes outside of your house to protect them from the winter weather. When you have MS, your myelin protective covering is damaged or non existent, so the result is that the communication between the brain and working the rest of your body is disrupted and things that were so easy for you in your every day life has now become some of the hardest things for you to even imagine putting together. This sickness literally hits you hard and turns your whole world upside down in an instant. Anything associated with nerves in your entire body is being affected by MS and lucky for us “MS unicorns”, everything in the entire body is associated with nerves (fu@$ing awesome). MS truly does not discriminate-any color, age, race, hair length, continent, gender or financial standings can be at potential risk and because it is not some genetic thing, you will never know if you planned your life right enough or if you took enough precautions to solidify that you won’t end up another statistic in our 2 million plus  worldwide problem without a cure. MS is a very unpredictable disease and with each diagnosis presenting itself in a new and unique form from the last one. It is not contagious or directly inherited and there are just too many assumptions floating around about how one goes about getting MS or exactly who is particularly susceptible to MS.
My biggest hope is that we can educate and enlighten not only those who are fighting the same battle as us but more importantly, those who are NOT fighting an visible battle. To create a world of knowledge and empathy for the unknown, a world of information but also inspiration. To bring a wealth of understanding and awareness to even the most naive keyboard warrior. A safe zone where nothing will be minimized and where every ounce of input is welcomed and very well could be what changes someone else’s life. To bring awareness to the wonderful world of MS. To eliminate negativity and share the wealth for wisdom in a world that is misunderstood and too often overlooked for a group of people who are constantly battling an invisible monster that they have very little hope for curing anytime soon. Where learning to live with certain things becomes a permanent fixture in your daily “to-do” list.
Please join in and share as much as you can-your stories, your recipes, your supplements, anything, and everything and please visit often, and let’s spread light, positivity, and knowledge in a world that isn’t always all sunshine and rainbows 🙂
It is through our brokenness and grieving that together we will be triumphant on the battlefield and the battlefield will become the dance floor that it once was. We don’t have to fight alone but we do have to fight hard.