“Childhood Expectations”

Sometimes, a simple picture can evoke feelings you didn’t know you’ve had…
From a young age, we look forward to whom we might become one day and have the highest expectations of what that could be; Doctors, Firemen, Astronauts… I mean, we were children, everything seemed possible in our youth. Not at all realizing, what big shoes we must fill, that our expectations don’t always coincide with what life throws our way, and how they will become vastly unlike the fairy tales that we’ve once read.

This illness makes us feel much less like a princess or prince, and more like the Little Old Woman Who Lived in a Shoe, or Humpty Dumpty who fell from the wall; only the shoe was also full of holes, and humpty’s piece’s have been misplaced. Has reading all of those “Happy Endings” set us up for real disappointments in life? In a way, yes!

First of all, wanting to only become a princess (I was a tomboy mind you, so being a princess was not on my list), is putting a chokehold on the minds of witty young girls. We can become so much more than someone’s arm candy or a trophy wife, and thankfully, many of us are. Telling us that this is all we have to look forward to is not conducive to our powers within. However, The Princess and the Pea does come to mind. The power to detect a pea beneath twenty mattresses and twenty feather beds. That’s pretty impressive, I’d say, haha. We do feel that sensitive at times, no kidding; many sleepless nights for this gal!

All joking aside… to those of us who have risen up to the occasion and became independent women, I applaud you. But, what we have also come to realize is that raising a family is indeed hard work as well. So the fairy tales of yore were deceiving in many fashions. Thus, we were unprepared for life’s “gifts” of tragedies, heartbreaks, and illnesses. Yes, there were, and are, wonderful things in our lives; family, friends, and many celebrations, of course. But, those “Happy Endings” seem to be completely out of our reach.

These days we can be left feeling more like the eccentric Miss Havisham, from Charles Dickens‘ ‘Great Expectations’ (another favorite of mine), only we’re waiting for the “Ending” instead of the “Happy.” The ending of pain, the ending of disbelief, the ending of loneliness. We’re trying to just feel normal, and our “New Normal” is filled with searching… searching for the cure to what ails us. And if we do indeed find it, I guess that will be our…
Youre not alone! Love you all 💜💋MJ

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

“You Don’t Know Me”

Your life started out normal enough, but as you grew older… I became more ill. I kept these things from you, from everyone, because I knew nothing of what I was experiencing, and refused to seem weak, as that’s how complaining would indeed make me feel. So, as I continued to hide beneath the smile; my shield from the world, you saw nothing wrong with me physically… and mentally, you simply thought I didn’t care. You should have seen that I’ve always loved you!
Only how could you,
you dont know me
Behind that smile was pain, depression, and suffering; the kind one wouldn’t want to admit to others. Especially to those that had not meant me well. So, I stayed steadfast and true, to what I thought was the right thing I should do. By staying mute and appearing normal, at all costs. Only that cost was high… it had become you.
And now,
you dont know me
It took, and still takes, every bit of strength I’ve possessed, to stay present and literally alive, for you, as well as for those that actually show they care for me. I want our relationship to connect more securely, to communicate more truely, and to love more dearly… But, you’ve only heard negative words describing me, the majority of your life. It’s no wonder our relationship suffers, and I know, I am in part to blame, as I stayed hidden beneath that smile, while others disparaged me through and through.
you dont know me
Your words have cut me like a knife, and you continue to use them; knowing that they have. Now I’ve come to expect them, sadly, and so they hurt much less… in fact, not at all on most occasions. I’m slowly closing my heart off from those feelings, and that may leave me cold one day. Of this, I’m sure, and worry that it may happen more quickly than even I could expect. If you only knew how close you’ve come to making me give up on life… my life.
once again,
you dont know me
I will never again be shocked by anything that comes my way. I’ve tried to apologize, empathize, and help you realize that I’ve been ill nearly my entire life. How I did the best that I could. That I thought I was protecting you both. Most of all, I NEVER stopped loving you! You have been more cruel to me than I could ever have deserved. And I don’t understand how you can’t see it, even feel it? Nor how you are so oblivious to the fact that you’re only repeating what you’ve heard.
Simply because,
you dont know me

So this is my last request, in hopes that you will actually give us a chance. Because who I am, and the pain and suffering I’ve endured, came from a man, who not only took my childhood innocence, but is also the cause of my illnesses… Fibromyalgia, depression, PTSD, anxiety, and more; because of my tender age at that time, I was literally scarred for life. If you could only see that, then we could begin to heal. So we may then listen to each other through understanding and compassion instead of defensiveness and accusations. But, if you simply choose to think I wanted to be this way, that I’m a bad person, and that life’s just been a “fairytale” for me… you’ll be sadly mistaken and will have missed out on all of my love that I had for you. And then, when someone asks you, “What was she like?” What will you have to say?
You’re too late…
You didnt care enough,
to know me.
*This illness has cost me what I love most … my sons!
You are not alone! Love you all 💜💋 MJ
FWmnn FB link: https://www.facebook.com/FIBROWarriorMNN/

“I’m Remembering…”

This week has been a slow and melancholy one. Although my sadness is not at its peak, as it once was, it still lingers. Occasionally creeping up on me when least expected at times, and of course, on those dates that will always remind me, of whom was lost; my late husband Desi Aragon.
Today, I am honoring loved ones, both here and gone…

(I gave this gift to Kelly as a keepsake, with a pic of her parents inside)

This past Thurs, I attended my best friends father’s funeral. I was determined to be there for her and was stressed over it for a few days, as she has been there for me when I’ve needed her most. So I couldn’t even fathom, not being present for her, on such a difficult day. My love had my car that day, so I took an Uber. Being as we live up in the mountains, I was unsure of how timely they would be, but fortunately, he was nearby, and the ride was comfortable. Crisis overted! I was anxious to see my darling friend, her son, and her husband. So on seeing her smile, it made me at ease. The ceremony was military style, and it was lovely to see the way in which they honored their fallen soldier. I took some video clips and pics to put together later for her as a keepsake. After all was said and done, everyone eventually met at their house. We all chatted a bit, watched a video her darling husband made; dedicated to her sweet dad, some stories were told of him, and we even had a laugh here and there. It was a beautiful gathering, and she handled it all with such poise and grace. I love this sweet girl dearly, and I can’t help but feel her loss. She was so close to her parents, and now she’s lost them both… I can only imagine the emptiness she must be feeling.

(Luis L. Kennedy’s funeral, July 13th, 2017)

This day had now brought up my feelings of loss… It was 13 years ago today (July 17th) that I lost my brave husband to a brain tumor. His loss still has an impact on me, even though much time has passed. I’ve not been in tears every day, mind you, but it’s a deep, empty feeling… a vacancy of sorts that I’m simply unable to fill. There are dates, pics, songs, scents… that brings about this melancholy sensation, and it catches me off guard on occasion. I have difficulty remembering things from the past at times… Then there are those moments where it all comes rushing back to me at once. But today, I can barely recall his voice, his laughter, his smile… it’s like faint whispers in the dark. I will always remember what a wonderful man he was, to me and to my sons. He put us all first. And with him, I was the happiest I had ever been, at that point in my life. Great kids, great husband, great job… just complete and utter happiness, for once in my tumultuous life. Only then, we found out he had a brain tumor just a week after our first anniversary. We tried everything to eradicate it, but it was aggressive and kept growing, despite surgery to remove a portion of it, plus the proton beam therapy for months afterward…

That following spring, I diligently planned a renewal of vows for us; as our second anniversary was near; to show him how much I loved him. It was to be a surprise, and I invited all of our family and closest friends. Unfortunately, two people ruined the surprise, and when he asked me about it, I was in tears. All of that hard work… But he just looked at me with his sweet smile, then said, “Oh baby, that’s ok. We’ll just make it bigger and better now. I love you so much!” As he wrapped me in his arms. Just a few days later, our house and backyard were filled with all of our loved ones. It was a beautiful ceremony, with an abundance of pictures and video taken of the occasion. It was a perfect day.
Three months later, he passed quietly away, at our home, in our bed.
The previous day; as many have depicted of their own loved ones; he was feeling quite good. He was up and about, as though nothing was wrong, and we had a truly beautiful day together. He told me how much he loved me, how I was the best thing that had ever happened to him, and how I am his one and only, love of his life. He said to me, “You made me want to be a better man!” How large those words were, as they came off of his lips. I then poured out my heart to him as well as we held each other tightly. This is a moment I will always remember!
The day he passed is one I shall not depict, as it was the most difficult of our lives.
After some weeks had passed, I sent in the vow renewal video, my brother recorded for me; to be made into several DVDs, to give to our families. I had not watched the video before this time, and it was now a month after his passing that they arrived. Once I received them, I immediately sat down to watch…
It was endering and lovely to see everyone, happy, smiling, laughing. In the end, there was something more… My brother had recorded a message from Desi that day. I felt so overwhelmed by his love while I watched him talk to me, from what felt like the beyond. It was an unexpected gift that I would cherish always.

(Desi and I, just married April 4th, 2002)
It’s now thirteen years later…

I find it difficult to describe my emotions this past weekend. Even today. I miss him, feel the ache of his loss, wishing his life had not been cut so short. Yet, I’m not crying. I can only imagine it is because I’m healing a little more each year. He was so insistent that I should be happy and to move on after he was gone. In fact, he demanded it! But, I fell part. So, moving on was slow and messy for a while. My sons had the toughest time because I was often unaccountable, as depression sunk its ugly claws into me so deeply. Thankfully, they had their dad (my first husband) to keep them together while I tried to find my way back into the sunlight. That dark cloud had diminished while Desi was in my life. Only to return even more fierce than ever after his passing.
I slowly found my way back to being somewhat whole again. And I can say that I am happy, for the most part, these days. Because I have been fortunate enough to have a good man in my life once again. To find real love once is difficult in and of itself… but here he is, My Love Bill. If I didn’t know any better, I’d swear Desi had sent him my way. I feel appreciated, safe, respected, and truly loved once more. I hardly feel I deserve to be happy at times, thinking that I’m a bad person for having any happiness. I had put these thoughts into my head for so long that it was hard to break free of that mindset. It took a long time for me to see my worth. I had to see it through someone else’s eyes! Desi first, and now again through Bill. He has been through it all with me. All of my thoughts put to words; for him to leave me, because he deserves so much more than I can give. That I’m broken, and how I love him enough to let him go. But he stayed… he stayed with me because he truly loves me. He even gave up having children of his own by being with me. If that’s not love, I don’t know what is? Through all of our tough times, his, mine, ours, we are still together. Stronger, in love, still holding hands, and cuddling, as if it was our first year, instead of halfway through our tenth.
So this is why I’m calm. Although there will always be that void left in me, I’m no longer full of tears and sorrow. Instead, I’m remembering…
I’m remembering the joy he (Desi) brought into my life, how intelligent he was, and so loving. The way he helped me become a better person, by showing me how to believe in myself, and thus allowing me to recognize a good man (in Bill), while he was standing right in front of me. All because he (Desi) revealed to me how a real man should treat the one he loves. So today, I celebrate him, thank him, and honor him for all that he was in life. And I’m so proud to say that I have a man in my life now that allows me these moments. Without feeling that my honoring Desi is in any way lessening my love for him. I am a lucky woman. Of this, I am certain. Despite my illnesses and all that I’ve endured. I recognize my gifts.

(Bill and I, December 26th, 2006 – Present)

Bill, you are an amazing man… my sweet, loving man. And I’m so proud to have you in my life, by my side, while we gracefully grow old together. I love you more than you could possibly imagine 💜 MJ
*In loving memory of my late husband, Michael “Desi” Aragon, and my best friend Kelly Kennedy-Lane’s father, Luis L. Kennedy. Forever in our hearts, always in our thoughts 💞
Also, I am celebrating the life of my handsome lil’ nephew, LJ. He turned two years old today. Happy birthday! Love you lil man 💓

You are not alone! Love you all 💜💋 MJ



“Imagination is Our Escape”

Over the years, I have watched a myriad of movies, and I’ve read a number of books as well. On occasion, I will choose one according to how I’m feeling; melancholy is often the case, but sometimes it’s happy, mad, or ultimately I’m just bored. Usually, it’s just simply something that’s caught my attention, so I engage. As my Improv instructor Michael Chain always says to us, “Read a book/watch a movie!”, with some exploitatives in between, haha! Yes, Mike, I will do it all more… promise! I’ve watched/read so many. They have all just seemed to meld together at this point.

I am drawn to dark, psychological thrillers, film noir, things of that nature, with some Stephen King and the like sprinkled in between. I’m not sure why, really. They just call out to me. I’ll also read autobiographical novels once in a great while, but what I enjoy most are period novels; by Jane Austen, for example, one of my favorites. They seem to pull me back into the past, to a time I’ll never know, but have found so indulgent over the years. I’ve even caught myself speaking the dialect; if I’ve read two or more, back to back, and chuckle at myself a bit, as I hear those words escape my lips for the first time. It’s interesting how impressionable we can be, isn’t it?
What is it about the unknown that’s so intriguing? Is it the fantasy of it all… just to be out of “our” reality, if only briefly? Our lives are filled with all things Fibro related, and as warriors, life can become so… mundane, and even repetitive. It’s no wonder we crave an escape on occasion, and a good book or movie can do just that, especially when you’re stuck in the house, more often than not. I do get out, mind you, but I’m disappointed all too often, by what I can no longer do. I used to be so incredibly active, pushing myself to the limits… and beyond! The happy, strong, funny MJ is still in there… underneath the cognitive fog, pain, and lethargy, but she’s having a go at it, trying to break free again! I desperately miss who I was once able to be. Yes, I do obscure the pain still, just not with the lust for life I once had. I feel that I disappoint others, as well as myself, often these days. The guilt of that weighs heavily on my mind, my soul… So, to get away from my selfinflicted guilt, I escape to another world through my books, movies, and even my dreams; I’m so often able to recall.
If I could read (almost) every day, I truly would, but my attention span doesn’t always allow for that. So watching a good movie fills in those gaps. Although, I still find myself hitting the rewind button all too often! Now, there was a time when music was my first go-to, and I’d sing! I’d sing until I my voice went hoarse! I love to sing, but now I don’t always feel I can, which makes me relate so reverently to a bird in a cage at times, whose lost its voice, from being locked up for far too long. My once sweet voice is likely to crack because I rarely use it these days… Fearing it will sound less than melodic as it once was, I don’t allow myself the joy as of late… but knowing the need to express myself through song, may very well take ahold of me again, I shall work my way slowly back to it… very slowly. The featured song on our podcast “Love Hurts” is mine, actually. I had written and recorded it in the mid nineties, but never finishing the song, unfortunately; a later tale I’ll share, and so this is a once and done recording. I’m happy that what I did record, gets some use, though, and is no longer just sitting in a drawer, collecting dust.
Love Hurts“:

With these muses, my days are passed… while I’m not ultimately working on all things FWmnn, lately. It may not seem like much, I know, but I still find joy in life, and it’s the little things that make me happy. Your kindness, for instance… things you have said and written to me have all absolutely made my day, by the way, so thank you for that, truly!
I’ve never been one who has set out to seek fame or fortune. I’m good with being a private person. The quiet and solitude can be most comforting. I don’t need the expensive things, especially when I’m unable to acquire them myself… Oh, how I loved and valued my independence! Now, just some of the home comforts are all I need… Love. Having love in my life is what keeps me content. I’ve had the world handed to me in the past, but turned it down… You’re wondering why, I suppose? I want/need to be loved… the way I love! And if that isn’t what’s on the table, I’ll pass. It doesn’t mean a thing to me, how nice the house, car, and clothes are… because if they knew me at all, it would be obvious I could care less about that. I’ve always valued companionship, filled with love, respect, loyalty, and (com)passion. Material things are temporary, frivilous, and empty. There are more priceless things in life… My family and friends are very important to me. Although I’ve never been the most reliable; not intentionally, of course. Having Fibro since my young teen years, kind of rules your world, and you have to bend to its mercy. It hurts my heart when/if I can not help or be present. So I do the best I can through writing. It’s my way of reaching out to you and letting you know that you are all important to me.

I may not ever write a novel, like the aforementioned Jane Austen… However, I am able to sit down and express the hopes and dreams that I think many of us are feeling but are too scared and/or unable to express. I will be your advocate, your strength, your voice. Just reach out to me, and I’ll help you in whatever way I am able. Being able to write to you, for you, is an absolute honor that I will continually cherish. Your trust in me does not go unnoticed.
So escape, into that other world
A lil’ indulgence is important to keep our minds free of life’s clutter. Sweep away those cobwebs, and revel in imagination!
You are not alone! Love you all 💜💋 MJ
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“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, anywhere else but here
This loneliness can become so comfortable that it turns 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 of 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

Facebook page: https://www.facebook.com/FIBROWarriorMNN/
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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 that I’m cautious about the medications I take and NOTHING in excess, ever! But there are those of us who 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 amount 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. This led to poor life choices and quick thoughtless decisions that could have ultimately led 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 learned 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 received a proper diagnosis, whatever 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 (given to me by my mom) with Marilyn gracing its 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
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Trying to Be Happy

Just trying to be Happy, that’s such a huge task to achieve! You’d think that being happy should come easily? It doesn’t… and the impact it has on you, and especially 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, throughout all of the obstacles thrown at you!
I, too, have been guilty of 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 of 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 to help anyone else! So, if you are unable to 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 can not 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. 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 crappy 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 obstacle, 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
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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 lilworld. 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 who 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 can not 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’

“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 of 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!?!
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
We have each other, we are strong together, and we are FIBRO WARRIORS!
You are not alone! Love you all 💜💋

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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 backward, and it 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, and 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 that 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 who 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!
Every day, 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
FIBRO Warrior, My New Normal: