“Are you lonely…?”

Are you lonely… right now? Do you experience this feeling, even while amongst many, in an overly congested venue? I too, have known this loneliness. Quite well in fact. It’s a very distinct sensation… as if you’re standing still in time, while everything within your eyesight is moving quickly, forward, fearless… without you. The connection is no longer relevant,  your body feels as though it could just disintegrate into mist, vibrating throughout the air… and no one, would notice. It’s almost, freeing! There’s no consequences, no expectations, no disappointments. It’s just you, and the faint sound of a heartbeat… your heartbeat. The once overwhelming noise of endless conversations, laughter, music… have all faded into nothingness. It’s so incredibly peaceful, if even just for a mere moment… then someone touches your arm, or speaks your name, and you’re quickly snapped back into reality. Once more, a reminder of how you wish you were, literally, any where else but here… 

This loneliness can become so comfortable, it becomes toxic. You find yourself spending more time with your four walls, your bed, and your regrets. The isolation will then begin to break you down, erasing any reminisce of who you once were; its ultimate goal is to dispose of you. It’s now drawing you ever more near… enticing you, enveloping every ounce of consciousness, until you no longer care to… breathe

Please! Don’t allow this vortex of darkness to diminish the life that’s still inside if you. Fight it loudly, and with every bit of strength you have yet, within you! You do not have to feel alone anymore. There are others out there, feeling invisible… much like our illness appears to others. No longer, shall you feel the need to be secluded. Give us your hand, and we will grasp it gently, yet securely

More and more, we are freeing ourselves from these shackles… Once veiled by shadows, which manifested through doubts, cast upon us by others, hence encroaching on our very own minds. Now we may see the sun begin to shine! At first it just peeks in, slowly inching the darkness over;  much like a younger sibling, wanting nothing more than to have the whole seat to themselves, and if they’re persistent enough, eventually they’ll have it… inch, by inch, by inch. And why should we allow the sun to reign?

  • Because our once unknown illness, has now stepped into the light and become known. 
  • Because our fight is no longer a group of one, against many. 
  • Because we are ready to be heard, and create awareness. 
  • Because what we have is, indeed very REAL

Here, you will feel welcomed, understood, and loved. We are your sisters, your brothers, your Fibro family. Reach out to us, and we will receive you with open arms. You are no longer ALONE… You are now amongst an army of many, we are warriors, baring a variable rainbow of ribbons, and we hear you

Love you all 💜💋 MJ

#FibromyalgiaAwareness 
FIBRO WARRIOR, My New Normal

Facebook page: https://www.facebook.com/FIBROWarriorMNN/

You can find all of our outlets here ^ weekly podcast, biweekly blog and montly vlog. We thank you for listening, liking, following, and sharing!

Marilyn Monroe: Could she have had Fibromyalgia?

As I sit here watching Autopsy: The last
hours of Marilyn Monroe

I can’t help but wonder, Could she have had Fibromyalgia? So many symptoms and similarities that we share, and that’s always what has made me feel a connection to this beautiful yet tortured being

The one significant difference is, I’m cautious about the medications I take, and NOTHING in excess, ever! But there are those of us that feel there is no other way to cope, and I can understand that. 
 

  • She was molested as a child✔
  • Had endometriosis✔
  • Had a lot of stress and anxiety✔ 
  • Today she would have been diagnosed as Bipolar (Me, not as far as I know)
  • Dealt with a lot of pain for various reasons✔
  • Had severe depression✔
  • And couldn’t sleep at night✔ 

She was prescribed (and given by friends) an enormous amout of medications, which appeared to be much more than she should have taken. Now, I can say this with certainty, that if she did have Fibro… it could have been overlooked or dismissed. Just as it had with me (as well as many other fibro warriors) throughout my tumultuous life. She felt trapped, as did I. Which lead to poor life choices, and quick thoughtless decisions that could have ultimately lead to her demise

If she was here with us today, would she be diagnosed with Fibromyagia? I’m not a physician of course, but through my vast experiences, and what I’ve learnt about the late Marilyn, it does seem quite likely. I know there will be those that say this is complete nonsense! And to that I say, ” Yes, maybe. Because this is clearly just speculation. Im allowed that Right?” Maybe if she had recieved a proper diagnosis, what ever that may have been, she would have lived a longer and less tortured life? I say that because, if I had received a proper diagnosis earlier in life, mine may have been quite different as well. I’m here and alive now, but still, I’ll never know what could have been… I may only speculate

I am a collector of Marilyn Monroe items. Amongst those various things, I have an original Life magazine with Marilyn gracing it’s cover, which I’ve framed. People have called her many things… only I see the smart, sweet, beautiful, and tortured soul that she truly was, not the ditzy dumb blonde that many choose to see. There is so much more below our “book” covers. Those things that are invisible to the naked eye, but can be seen…if you’d only take the time to look closely, thus honestly, try to understand those hidden treasures and demons we all may have stashed away beneath our smiles

💜 Happy 91st Birthday Marilyn 💜

Remember, as always…

You are not alone! Love you all 💜💋 MJ

FIBRO Warrior, My New Normal

Facebook page:

https://www.facebook.com/FIBROWarriorMNN/

Trying to Be Happy

Just trying to be Happy, that’s such a huge task to achieve! You would think that being happy should come easily? It doesn’t… and the impact it has on you, and especally those around you, is immeasurable. You may spend your entire lifetime trying to accomplish it, and pleasing others. Just when you think it is within your grasp, it gets ripped away by a tornado. Because all that can be seen in you, is their disappointments. They are blinded by it! Because of that, they are unable to see nor appreciate how much you love them, have grown, changed, accomplished, through out all of the obstacles thrown at you! 

I too have been guilty if this, but the difference is… Im trying! I’m learning to see the good, and I’m trying to better MYSELF! I’ve had less support than some, and that means more effort has to be put into who I am. That makes me selfish in a sense, yes, but think if it this way… For example: when you’re on a flight, they give you safety instructions. One being, “Please put the oxygen mask on yourself, before attempting to help others.” There’s a reason for that! Think about it… If you can’t breathe, then you will be unable help anyone else!  So, if you are unable love and improve yourself, how can you give anything, but disappointment, to another? While you are still struggling with it all on your own! 

So finally, you are almost there. You’re feeling better about who you are, understanding what’s happened to you, around you, and why/how things turned out the way they have. It’s what some call “the Domino effect“, and what happens to our parent(s), will most likely have a direct impact on “us” their children, and then “you” on your children… and so on and so forth. Now, add your illness, how it manifested, and then you have the “Aha” moment! Everything becomes clearer. Life begins to move more smoothly, you can feel yourself healing, little by little. You feel like you’re reaching an understanding with at least one of your loved ones, if not more… Then, the unexpected happens, and that Happy feeling turns Dark in an instant. Only the ones you love with all of your heart, can have just such an impact on you. As much as you want them to know they are loved and supported beyond measure, you cannot force them to understand it. They are still struggling with their own shortcomings, and you’re to blame. So you attempt to help them understand you, the struggles, the illness, family life growing up, and thus hoping that they will in turn understand themselves. That although you tried to be, and do, your best, you had shortcomings as well. Your toolset wasn’t complete… it was missing several key components, important tools… and having good health, was one of those major missing tools! 

Finally, to your alarm and surprise, you’re told that basically, “Its all only about you. That nothing you say, nor do, will matter. It’s too late!” What!?! Although they are right about some things… you stumbled, failed, faltered, mistepped, and were less than perfect. You tried your best! You kept trying and you’re still trying! That should count for something, because you are truly coming to grips with this crappie illness and the life you’ve been forced to lead. That you’re trying to be positive, while also helping others, and thought that you were making them, your family, proud

So, here’s the thing… It’s NEVER too late! Saying it’s too late, means you’ve given up, and/or that this person means nothing to you now. So what do you do? Do you believe them, when they say it’s too late, and just give up? Or do you continue to do what you’re doing… staying positive, finding purpose, and trying to help them see/feel the “Aha” moment you’ve come to experience? Well, I’m going to continue on my journey, knowing I’m doing, and have done, the very best I could, with the cards I was dealt in life. And believe, that I will help them to heal, feel better about themselves, and “Us“, someday soon…

My heart is immense, strong, and open, but my health is an obsticle, in which I’m learning to contain, comprehend and succumb to my will. 

Stay strong with me my fellow Fibro Warriors!

You are not alone! Love you all 💜💋 MJ

FIBRO WARRIOR, My New Normal 

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Life Then… Life Now

When we’re young, our perspective on life is shallow, as are we, in a sense. What we learn as we grow; in age and mindfulness, we also begin to gain our depth and dimension. For most, it’s just learning life’s lessons… love, money, security, etc. But for those of us who are, or will become ill, life has different lessons for us; sympathy, pity, denial, anger, empathy, emptiness

We look at things quite differently now. Those rose colored glasses have long been removed, although we like to put them on for reprieve on occasions. We now see life clearly… all too clearly
The things that seemed once so important to us, no longer are. Our needs far outweigh our wants, and material things are pushed to the wayside. We no longer want huge houses or fancy cars, we just need a decent (and peaceful) roof over our head to call home, and a reliable vehicle to get us to Dr appointments and such. Going out to fancy events, no longer appeal to us, in fact, they make us anxious if nothing more. Big gatherings become small, long outings become short, and exciting vactions become daunting… this is our life now. Our world is small, quiet, comfortable, and simply that… our own lil world. It’s full of comfy blankets and PJ’s, coffee to wake us and tea to soothe us, good books and/or our favorite TV/movies, quite time full of reflection, and our sanctuary houses all of these things, here we are safe

Beyond those four walls is everything else… the noise, chaos, and others looking at us with disbelief. For we are no longer human to some. Those whom once looked at us with love, kindness, honor… now seem to want to cast us aside. So we may see their true colors, where once we did not,  because those glasses, I aforementioned, have been knocked off of our faces one too many times. 

Life once seemed so hopeful, love was always thought to last a lifetime, and our outlook on health was non-existent. We were still able to get over that cold in a week or so, and that nasty bruise disappeared within days, and scratches were merely noticed. Life was simple, we were young, and the world was ours. Only we didn’t really know what the world had to offer… not the one we’ve come to know. I’m not saying love can’t last, or that the world is evil… but, when you live with an invisible illness, you start to feel invisible yourself. People/Dr’s don’t see you anymore. They see nothing, nothing but our complaining about something they cannot see. So, we stop… we stop complaining, and begin to keep it all to ourselves, hidden inside. Then comes the isolation. Which is the worst thing for us! We try to find comfort within, and surround ourselves with the lil things that help us get through our long unending days.

As we get older, we do get wiser. We see things as they truly are. We just have to find a way, and choose to appreciate the good in life. It’s available to us! Find our worth, it’s still there… isn’t it? No matter what we hear, or has been said about us, know that we are worthy, of love, of friendship, and of honoralways!
And please know this…

You are not alone! Love you all 💜💋MJ
‘ FIBRO WARRIOR, My New Normal’

https://www.facebook.com/FIBROWarriorMNN/

“You Don’t Appear Sick…”

You don‘t appear sick…”  So why should anyone believe us when we say that we are? Let’s put it simply, shall we… Do you really think we choose to be stuck in the house, with no income, no life outside of our bedroom, and eating “food” that hardly deserves to be called that? Seriously

I had a life! Not much of one, because I’ve been ill for the majority if it. But I pushed myself to do what I could through the pain. Every moment I shared with my sons, I spent hoping it wasn’t my last, because I was in such physical and mental pain, while still trying to make the best of it, so they would be happy and see me “happy.” Every second of the day spent, and everything I did with My Love, I kept the pain hidden, as to not spoil our wonderful life we shared together. Every long drive or plane trip, would kill me, but I’d do it for some much needed and necessary change of scenery. Every weight I lifted, I did it because I didn’t want my body to give up or give in, to whatever was wreaking havoc on it. Every outing with friends to lunch or dinner, I joined because I didn’t want to lose them, by saying I’m too tired or not feeling well all of the time. Every softball game I played/attended, because I knew the last one, would be my final one. Everything I did, I did it with purpose. Knowing what no one else could possibly know, nor understand… because I’ve kept it hidden behind lock and key. Always certain, that I was truly not well… only I had no clue as to why, yet. Hence, why I wouldn’t waste my precious time trying to explain how much I am hurting, or how tired I always am? When I couldn’t give them the medical reasoning for it… 

(So let‘s pretend you are me now…)
That day finally comes, and you have a reason! Great… Right!?!

Hahaha

Forgive me for laughing… but, you’ve just found out your reason doesn’t have any real backing, that some Dr’s think it’s total B.S., and that you can’t get any help financially; without jumping through a myriad of hoops! 

(How are you feeling about yourself now?)

So why should you believe us, when we are explaining how sick we are? 

Because were telling you that we are

You are our family, our significant other, our friend… why would we lie to you about this? Do you really believe that we want your pity, sorrowful looks, and/or disdain? That’s why we put on the happy face, so we won’t have to endure any of that. We feel like $#!+ constantly! So to those family members, significant others, and friends that were and are so heartless, that you felt the need to make us feel like liars, losers, and less than worthy to be believed and loved
Wedontneedyouinourlives!”
We have each other, we are strong together, and we are FIBRO WARRIORS!
You are not alone! Love you all 💜💋

#FibromyalgiaAwareness

FIBRO WARRIOR, My New Normal

Facebook page:

https://www.facebook.com/FIBROWarriorMNN/
Our FWmnn crew:

MJ Aragon

FB Admin/Podcast Host/Blogger/Vlogger

Christy Ortiz

FB Moderator/Podcast Co-host

Jojo Myricks

Podcast Producer

Tony Jefferies

Podcast Producer

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:
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It Will Not Define Me!

The room is spinning… I have come to know this particular feeling all too well. As I lay here alone, contemplating whether I’ll make it the twenty feet needed to reach my destination…. the place where everyone has once visited, on this formidable occasion. It compels me to exert every muscle in my torso, as I realize settling for the nearest receptical, is all I can possibly muster. It’s disarming… I am completely without control. Something I do not savor, but have heeded to these past years. As quickly as it came on, it was done, although it felt like eternity within the moment. I feel relieved, yet weak and spent. It’s a remarkable feeling of loneliness, emptiness, helplessness. Just as I felt some fulfillment, It’s then ripped from my very soul

That was life for me more often than not. I didn’t know what was really wrong with me back then. Just that I was constantly getting sick, and it was getting worse as the years went by. To go through the majority of your life, knowing something isn’t quite right, is not something you can explain to others. Your Dr’s aren’t telling you anything useful, so how can you explain You to others around you; children, family, friends?

You start to isolate yourself on occasions, and always have trouble sleeping at night unlike everyone else you know. You have difficulties being a mom, doing mom duties, so people begin to think and believe you are a bad mom. How do you prove them wrong? When you can’t get out of bed to take your kid(s) to school on time, nor pick them up after school promptly. They even have to make themselves a bowl of cereal in the mornings. Because your internal clock is set to be up all night, which leaves you next to lifeless by morningNo matter how hard you try to be a good mom, you are met with an obsticle… and invisible obsticle no less, which you later discover is Fibromyalgia.

As the years go by, you are less and less able to be there for your children. You have to give in and allow them to live with their father and his girlfriend/wife, off and on over 10 years. From the outside looking in… that looks weak, careless, neglectful, less than motherly, and to your children it feels like abandonment! Although you’ve never truly abandoned them… You were always there to pick them up from their dads and drop them off once a week, spend whole summers with them, Holidays, and Birthdays… Only, you were no longer their #1!  But, once again you had them back, and while you were able to have them live with you (great job, great husband),  super mom kicked in for awhile, and you received an award for you devotion to your children and their school. Then, your husband becomes very ill and dies due to a brain tumor (a year and 3 months later). Your world turns on its end, and you eventually have to let them go, you can’t function, and they are back at their dad’s house. You were close with them… only now you begin to miss out on everything involving them, because of the lack of communication, or none at all, with your ex. You hear about all of the nasty things being said about you while they are at their dads house from various people, including your own children. Even when you try to be the bigger person and not grill them about what they do while they are away from you; like you know is happening to them there… as well as try to refrain from speaking of them (ex and ex’s wife) badly, as they so often have about you. You are Hoping they (your children) will remember that, as you try to keep your witts about you.

Imagining someday when they grow up, you’ll finally know what is truly wrong with you, and you’ll finally be able to explain it to them (your children)… but it takes almost your entire lifetime. They’ve now heard all of those not so wonderful things about you for years! How do you come back from that? You have to hear about how much better they are than you as parents… but if they were truly such great parents, they would have sheilded the children from those horrible words they spoke of you. Made excuses for you, so as to not upset the children, and tried to communicate more freely and peacefully. That is what a good parent would do. But no, that is not what they did, and you were always left to defend yourself against their pointed fingers and harsh words.

Fastforward a few more years… You finally get a diagnosis. All of the pain and suffering you’ve endured over the years can finally be explained! Only, you fear, and then find, that some, especially them (ex and ex’s wife)… they don’t want, nor do they seem to believe you, and once again, they say it in your childrens ears…

How do you come back from this! When the majority of your beloved childrens lives have been filled with so many untruths, out and out lies, How?  I have just about lost, one of my children to this evil persons words, and my other child has grown into a wonderful, thoughtful man, whom takes the time to listen and understand me and my illness. The worst part is, he may be suffering like I have, with depression, arthritis, and possibly Fibro (if not now, maybe soon). I wouldn’t wish this illness on anyone, especially my children! My other child, ha, when I talk with him, he only asks if he can get what I have; when I tell him I have been recently diagnosed with Rheumatoid Arthritis (he already has Osteoarthritis I believe), and asks what other bad genes I may have passed on to him? Rarely does he ask how I’m doing, and when he does… I sugarcoat it like I’ve learnt to do with everyone over the years. He’ll ask “Did you get a job yet?” Knowing full well, I can’t work and why. But of course there is that other not so lovely person, telling him I’m not really sick, for her various ridiculous reasons. Like, because I wore heels and makeup to my sons wedding, that makes me a liar? We were sitting the entire time! Now had I needed to stand for awhile, or walk for a distance, heels would not have been worn, or I’d have a back up pair of flats. We put makeup on to feel normal, it’s our mask(!) to hide behind, so as not to allow others to see our Fibro faces. Is there something wrong with this woman? Hasn’t she talked enough nonsense about me? But then, I have to realize, she’s like so many others… they just don’t want to believe, out of their own ignorance, and there’s nothing you can really do about that!

My children will always be just that, my children! And like my eldest, I hope my youngest will grow up and realize that I did the best I could, throughout and after all I’ve been through since childhood… molestation, neglect, emergency c-section, divorce, losing my 2nd husband to a brain tumor (I’m sure I’ve forgotten something), and of course being ill the entire time, and not knowing why! 

My children do not really know me, well, my eldest and I are getting to know each other again, but I’ll always feel the need to have them both on the same page. Someday soon I hope!

But through all of that, I say this…

I will Not allow Fibromyalgia to define me! …

This is most likely the face I make when someone doesn’t believe Fibromyalgia is real, or that I’m as sick as I say I am. Ha! If you could have only walked in my shoes… you wouldn’t be so smug. This is what we endure constantly!
Fibro has taken so much out of me and from me… But, it will NOT define me!
I know you understand where I’m coming from. So…

Say it with me:

“Fibromyalgia will NOT define me!”

“I will NOT let others opinions and lies effect how I feel about myself!”

“I am here, I am truthful, I am worth loving, I am in pain… and I have Fibromyalgia!”

We cannot allow another’s ignorance towards our invisible illness, bring us to feel badly about ourselves. We are worth more than their mere words. Love yourself! You deserve it! And remember…
You are not alone! Love you all 💜💋 MJ
“The Purple haired FIBRO WARRIOR”
#FibromyalgiaAwareness

‘FIBRO WARRIOR, My New Normal’
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