Nocturnal Bliss 

Being nocturnal has its advantages. Like the serenity of knowing everyone else is asleep… it’s so quiet that I can hear the crackling, of my now arthritis ridden neck. It harmoniously plays along with the light but constant ringing in my ears. Oh how I appreciate the silence of night. Although I’ll never know the pure sound of still air ever again, I happily appreciate the absence of day to day noises during my sleepless nights. My Circadian rhythm is backwards, always has been, so I’ve learned to take advantage of this small window of peacefulness. 

Trying to sleep during the day has its disadvantages… always being awoken by someone else stirring throughout the house. What may seem normal to others, can rip me from my precious few hours of sleep, leaving me with a headache on occasions. I can’t blame anyone really, it’s my issue, I should be used to it. But, I never truly am, and it can weigh on me. 

The only thing that keeps me sane is my alone time… contemplating my wants for our future, needing to feel purposeful, and hoping that I can accomplish all that I hope to, before Fibro, Rheumatoid arthritis, etc., claim every second of my life. Right now I’m as good as I can be considering, and I need to stay ahead of what’s waiting for me, for as long as I am still able to fight it. We are truly warriors… against our own bodies yes, but that doesn’t make the fight any less important. We need to stay united in our struggle to spread awareness, so that our lives won’t be filled with the usual drama of someone we know or love, leaving us feeling less than human. And most of all to find a cure for this dammed disorder/disease/syndrome/illness, whatever you want to call it… it needs to be extinguished! 

I choose to stay positive. Yes, it is a choice, yet not an easy one. I work hard at it. To the average person, I probably seem pretty upbeat, happy, not sick at all. Little do they know what’s hiding underneath that smile. And that’s ok with me more often than not. Sure, it makes it more difficult for people to believe me, but I enjoy being treated like everyone else, instead of seeing the sorrowful faces that you’d get if they knew how awful you truly felt. I’m aware not everyone feels that way about this… and that’s their choice of course.

I know that being happy means I have to try everyday, to see the brightside of each diagnosis I receive, every flare day I endure, and any misconceptions someone may have as to how ill I actually am. I find that happiness deep down within myself, when I wake up each day. It’s buried in the beyond… and it does take a moment to find, but I know what my day would look like on the other side of that coin, if I didn’t. 
So I get up, have my tea and a small bite to eat, take my medication(s), and start my day; by figuring out what I could do today, to help someone else. Someone that has just received their diagnosis, for example. I recall vividly, how hard that day and coming months were… and if I could just take some of that pain away for them, then I’ve accomplished something good! 

I think about each thing we share… the podcast/blog/vlog and occasional articles on our Facebook page, and how  it may enlighten and ultimately help another family member of a Fibro sufferer, but most of all how it can allow our fellow Fibro Warriors to feel understood, loved, and less alone. This is what drives me! I have never felt this proud of myself. Can I say that without sounding narcissistic?

Seriously, having the amazing crew that I have with me, is why I’m able to see this journey through! To help others and spread Fibromyalgia awareness is my purpose. If we can make one person a day smile, one person a day feel understood, one person a day feel loved, then we are doing this right! 

Everyday I’m consumed by this need, and when I’m feeling less than ok, I worry that I may fail someone. I know that’s a lot of pressure to put on myself, but I’m unable to let myself fail… not in this!

 So maybe this is why I’m so comfortable in my “Nocturnal Bliss”, because I’m free from the stress of my (late) days, able to indulge in a good movie or book, and even write a blog if I’d like, uninterrupted and carefree, for the moment. See, you can find the positive in anything, if you really want to. Good morning for you, goodnight for me!

You are not alone! Love you all 💜💋MJ

#FibromyalgiaAwareness 

FIBRO Warrior, My New Normal:
https://www.facebook.com/FIBROWarriorMNN/

My Darkness…



Despite the title, this actually has a positive message.

I’ve struggled with depression almost my entire life. I’ve had to work so hard to stay in the sunlight, and avoid the darkness, at all costs…

I am one of those unfortunate people that cannot take antidepressants, because they actually make me suicidal instead. I’ve hidden my depression from most everyone throughout my life, not wanting to hear the negative comments, I’ve so often heard people say about others. Depression has always had a stigma attached to it, so who would wan’t to reveal something that damaging. Having pain on top of that since my early teens, hasn’t made my road easy, by any means. I only recently (past 3-4yrs) have been able to be open about my depression/Fibro, as well as my  multitude of other health issues. Its been a long, lonely road… and because I know how truly awful it is to feel so alone, I go out of my way to try and help others to feel more loved and understood. It’s not an easy task to be any one of us here, and to walk in our shoes, of this I am certain. I’m very sensitive on occasions, and could cry for the simplest of reasons, yet there’s other times when I know I should be crying, only I feel nothing, just emptiness. It’s such a roller-coaster of emotions! 

Today was actually a very tough day for me… but my determination to stay here on this earth for my loved ones keeps me going. That darkness follows me everywhere, just waiting to take over, but not today! I have really amazing things I’m trying to accomplish now, by helping others. That’s extremely important to me, so much so, that I’m pushing myself harder than ever. 

Here is a link to one of our podcasts, where I touch on depression, as well as other things that are connected to Fibromyalgia.

https://soundcloud.com/user-836634847/fibrowarrior-episode3-our-existence-with-guest-diane-schwitalla

Everyday is a battle for me/us (FW) in some form or another, so taking it one day at a time is key. 

It’s either the allover pain, that can just suddenly take your breath away…

or the need to get up and start your day, but your body just doesn’t feel like cooperating…

or of course the depression that sets in for some reason, and sometimes, for no reason at all…

or the need to get anything mentally challenging done, but your brain is on strike…

I could go on… no seriously, I could. And if you are one of my warriors reading this right now, I know you understand the struggles with living “life” one day at a time. There is no “making plans” in advance, because we have no idea how we’ll be feeling from one day to the next, so we miss out on so much, with our family, our friends. But I’m still fighting… fighting to live, fighting to laugh, fighting to love… and most of all, fighting to be heard! Hear me! I am not well, no, I’m not… but I am here, I am strong, and I am determined, to spread #FibromyalgiaAwareness and to retain the belief that we will find a cure someday! I am a 47 year old (48 on March 10th), purple haired, Fibro Warrior! 

And to those who don’t/wont’t/can’t understand us… They can love me, or hate me. This is me, and I don’t plan on changing any time soon!

You are my Fibro family, so remember… You are not alone! Love you guys 💜💋


You can find all things ‘FIBRO WARRIOR, My New Normal’ on our new Facebook page: @FIBROWarriorMNN, or contact us by email at: MJfibrowarrior@gmail.com From left to right: (me) MJ Aragon – podcast host/blogger/vlogger, Tony Jefferies and Jojo Myricks – my producers, and Christy Ortiz – my (occasional) co-host. 

My New Normal 



Hello my fellow Fibro Warriors! The post below is what sparked my idea to write a blog, as well as a podcast (already recorded 3), and a vlog to come, same name). I have Fibromyalgia, along with many other issues attached (like Rheumatoid arthritis, Osteoarthritis, Migraines, PTSD, ADHD, severe Depression, Allergies-food/eviromental, Vertigo, Tinnitus, etc., the list is long), and I slowly began to share this with my friends on FB, only a few years ago. Just a lil at a time, because I wasn’t sure how well received it would be… worried that it might be a subject people wouldn’t care to hear about, and/or that they may just stop following me altogether. To my surprise, with each post, I received positive feedback, along with private messages, thanking me for sharing, how it helped them get a diagnosis, and how much they related to my story/journey. With each post I’d share a lil more, and this post I’m sharing today, is the one that lead the way to ‘FIBRO WARRIOR, My New Normal’, a podcast I began about 3 weeks ago, as well as this blog, and vlog to come. I have an amazing crew working with me! My Producers: Jojo Myricks and Tony Jefferies, my Co-host: Christy Ortiz, and myself as Host. They are the most supportive and wonderful people, I couldn’t ask for more. 
This is my journey, and I want to share it, because it’s important for others like myself to know that “you are not alone!” You can also hear me read the post to follow, on my ‘FIBRO WARRIOR, My New Normal’ podcast Episode #2  subtitled “My Inspiration” on SoundCloud. Episode #1 “Pilot”, is also available, and Episode #3 “Our Existence” is on its way. 

https://soundcloud.com/user-836634847/fibrowarrior-my-new-normal-episode-2-my-inspiration


So here it is, the FB post that helped spark it all.

​I’m having a great day today! You might ask yourself, “Why should we care?” Or “Is she bragging?” Oh, quite the contrary. I’m not on any great adventure, nor am I accomplishing some great feat… What I am doing though, is feeling good about myself, which I don’t do often enough. When you’re dealing with pain, lethargy, depression, and cognitive issues on the daily, life just becomes one big blur, with each day just bleeding into the next. When I’m feeling up to the task, I try to do more than I should; then I inevitably pay for it over the following 3 days or so. It’s a vicious cycle that I’m all too familiar with. Today though, I’m not going to overdo it… Instead, I’m going to take a moment to share a lil about my journey with an invisible illness. This may become lengthy, so if you’re not up for that, you should exit now. You’ve been warned… 

Very frequently when you see me, I have a smile on my face; hiding whatever I may actually be feeling on the inside, while trying to enjoy myself, engage in conversations, and make that particular day/night have some meaning, which is not a small task for me. What most people do with ease, I now struggle with more often than not. I’m lucky if I can remember what was said to me a second ago, or if I can get the words out of my mouth, that seem to constantly get stuck in limbo amongst the clutter that is now my mind, or what’s left of it anyhow, and to think I was once fairly smart. I was actually made aware of this fact in 5th grade, when my teacher apologized to me… He had actively put me down, and at the bottom reading level, to make his point. I quickly surpassed all four levels with ease, as well as completing six books ahead of the class. When we received our SAT scores (I believe), I ranked 4th year college level in reading and vocabulary. I was proud, and to my surprise, my teacher pulled me aside and apologized profusely for his injustices. I’ll never truly know why he treated me so poorly at first. Was it seeing a white girl with a Hispanic last name, that may have rubbed him (my white teacher) the wrong way… just a theory of course.

But I digress… 

My point is, that now I feel like that fifth grader, before she discovered how smart she really was, and always questioning her self worth. I literally avoid conversations when I’m struggling with cognitive issues. So if I’ve ever seemed distant, this is possibly why.

It’s difficult recalling how I was once a social butterfly during my 20-30’s, putting myself out there and trying to stay in the moment. I miss that lighter, sarcastic, funny girl. Where has she gone, I often wonder? I was successful for the most part, staying positive, allowing myself to enjoy the sunlight and avoiding the “darkness” at all costs; a cloud that has relentlessly follwed me throughout life, and has given me more than my share of angst. But I was strong enough to push through it, not very gracefully at times and always with a few scars to remind me of where I’ve been. Still, I pushed myself to be happy, productive, and to be a good person, mom, sister, daughter, friend, as best I knew how. On the outside looking in, you may have interpreted it differently, and for that I understand and apologize. Things haven’t exactly come easily for me, I’ve worked hard and pushed myself to my absolute limit! Always, always, an uphill battle for me.

Since 3rd grade on, I was constantly involved in some sort of sports or outside activity, unlike anyone else in my family; a bit of a Tomboy. I developed early though, so that wasn’t ideal for someone who does a lot of physical activities. The pain began somewhere between the ages of 12 to 14 yrs old (maybe younger), but still I stayed active. Initially I thought it was growing pains, but my description varied greatly from my friends accounts. I didn’t have a close relationship growing up with my mom and pop (step, but still my pop), so I kept it to myself. Often thinking they’ll assume I’m trying to get out of my multitude of chores anyway. I was a kid, what did I know? Now in hindsight, I realize I should have spoken with them, regardless the outcome. But then, much like now, I’ve kept my pain to myself, not wanting to burden others. 

Continuing on as a young adult, out on my own… I would eat healthy, worked out, didn’t smoke or try/do drugs, and if I drank I had water in between drinks to stay hydrated, rarely having more than two. I’ve lived my life pretty healthily. But my body had other ideas in store for me, and no amount of determination on my part, was going to detour my illness from wreaking havoc on my life. So as you now know, Depression/Fibro took ahold of me at a very early age, so my teen years are not looked upon with much fondness of course, nor my childhood for that matter. I’ve always felt a bit of a disconnect from my life/family/friends, as if I don’t belong here, and I always assumed I wouldn’t be long in this life…

It’s easy to go dark, when you’ve lived your life in pain, not wanting to share that darkness, knowing it will scare most people (away), and inevitably cause them to either feel sorry for you, or say that you’re weak and needy, amongst a host of other negative things I’ve heard/endured over the years. None of which you’d hope for, especially when so many of us are uninformed about illnesses like mine. I’ve become accustomed to these types of reactions, and I want you to know that I’m quite the opposite of “Weak!”, because it takes a certain kind of personal strength, to acknowledge your obstacles and overcome them, over and over again. This cycle will never end for me, and my loved ones will have suffered the most because of this. Hence why I’ve chosen to keep them at arms length for the majority of my life. Their having to endure my ups and downs couldn’t have been easy either, not truly knowing what I’ve been living with internally/invisibly. It took me years to begin to share this struggle, without worrying what others may think. This is me! I have honestly done the absolute best I could, although it didn’t always appear that way, I’m aware. Through it all, I’ve learnt one very important thing… to love myself first. Enough so, as to not be ashamed of what I have endured throughout my life… Fibromyalgia/Arthritis/Depression/ADHD. It took almost a lifetime to get my diagnosis for Fibro, which lead me to feel embarrassed and/or like a hypochondriac, as each Doctor (there were many) would tell me they couldn’t “See” or find anything wrong with me. I even gave up  for awhile (~6yrs), and only when I lost the ability to hold down my job; because I was chronically sick with bronchitis for almost an entire year, did I go vigorously in search of an answer!

Finally, the relief and disappointment I felt at the moment of my diagnosis… 

“You have Fibromyalgia. There is no cure, so this will be a life long illness.” As I watched those words fall from my Doctor’s lips, my heart felt light, then it instantly took on the weight of a boulder. The words “No cure”, kept playing repeatedly in my head. My depression quickly overcame me. The next year of my life suddenly vanished before my very eyes. 

Oh how sorry I am for checking out (in a sense), for letting it take me away from those I love. I didn’t want to do anything anymore. I kept getting bad news after bad, from each Dr I saw (11 or 12 in that one year). It was sucking the life out of me, and if it wasn’t for my love for Bill, my two sons, my family, I may have checked out completely. Who knows?

Fastforward, 6yrs later…                               I’ve come a long way from then, researching and learning how to live in “my new normal.” So, “Today is a great day for me!”, because I can appreciate the sunlight, and my clouds, however briefly, have dissipated. I may not be able to show it always, but my loved ones mean the world to me! Thank you all for being in my life and showing me love through it all! 

*Apologies for its length. But hopefully my story will help someone out there in need. I’m here for you. You are not alone! Love you all 💜💋 MJ