Author: FIBRO WARRIOR, My New Normal

Pain/Fibro, Childhood/Adult PTSD, Depression, Anxiety…
Here is the short version, for most of us…
When we are quite young and have traumatic events occur in our lives, our brains are still developing at that point. So anything like physical/mental/sexual abuse, surgeries, accidents, etc., causes a change in the way our brain develops. Once altered, it is unable to function normally as it should. So we are often left with ongoing issues like childhood/adult PTSD, Depression, Anxiety, and Fibro; and for some of us, much more.
Me: at around 3 or 4yrs old, I’m guessing… about the time my abuse began.
We go through life after that, often questioning and/or blaming ourselves for everything that we go through or that happens to us. In reality, we are left to feel inadequate because of the traumas we’ve endured through no fault of our own. But because this has all been SO misunderstood, we took it ALL on ALONE, in most cases; which comes with its own set of guilt rendering issues. Those around us can not ever truly understand what that is like. We can only hope that they will empathize with and love us for who WE ARE, not what illnesses we have.

Love yourself first. The rest will fall into place.
Because of all that we’ve been through…
I know that you are stronger and more loving for it! It is people like us that make our former selves (others now going through what we have) feel less alone, understood, and loved because we have truly been where they are.
*This post was inspired by a conversation I just had with a fellow Fibro Warrior named Rosa Elena. I love it when someone asks the questions that inspire me to write posts like this. Thank you!
You are not alone! Love you all 💜💋MJ
*This is what I’ve discovered and purely my opinion, after tireless researching, medical articles, medical videos, as well as my own questions proposed to others in my FIBRO groups.
*I neglected to add this when I originally wrote my blog, and it is important that I do. That is, a trauma in any form; physical, mental, viral, can happen to you at any time in your life, and cause this illness. The younger you are (5yrs old or younger if I’m not mistaken), the more issues you will likely have to endure. If you have a family member that has Fibro, it’s more likely that a trauma you suffer may cause you to also have Fibro. Examples: A car accident, having a baby whether naturally or by c-section, having a bad viral infection, an accident that caused damage to any part of your body, losing a loved one, loss of a job that caused you to lose or almost lose everything else, verbal abuse, physical abuse, molestation, rape; these are all types of trauma, and I believe it is the trauma that originates the symptoms. Doctors need to look deeper, into our Brians and Spines (Vagus Nerve), because most of the damage we endure is effected by those two areas, and because they are connected to every tissue/organ from our skin inward, it is where I think the key to our illness lies. And I will search tirelessly to find it, even if my own body has to be the guinea pig. If you’ve suffered any of these types of trauma and need help, talk to your Dr and see a therapist. I know not everyone cares for that idea, but talking about what you’ve been through can help if you allow them to, and most of all, be completely honest with them. They need the truth to help you heal. 🦋

The purple haired FIBRO WARRIOR

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…
HAPPILY EVER AFTER!
You‘re not alone! Love you all 💜💋MJ
#FibromyalgiaAwareness

‘FIBRO WARRIOR, My New Normal‘
Facebook link: https://www.facebook.com/FIBROWarriorMNN/

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,
since,
you don‘t 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 don‘t 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.
So,
you don‘t 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.
But,
once again,
you don‘t 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 don‘t 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. And since, life has not been extremely kind either, while others have also disparaged me. If you were only able 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’ve 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 have for you. And then, when someone asks you, “What was she like?” What will you have to say?
Nothing… truthfully.
You’re too late…
You didn‘t care enough,
to know me.
Mom/MJ

*This illness, amongst other obstacles, 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/

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
#FibromyalgiaAwareness

FIBRO WARRIOR, My New Normal

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

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

#FibromyalgiaAwareness
FIBRO WARRIOR, My New Normal
Facebook page: https://www.facebook.com/FIBROWarriorMNN/
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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. I‘m 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
Facebook page:
https://www.facebook.com/FIBROWarriorMNN/


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 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 honor… always!
And please know this…
You are not alone! Love you all 💜💋MJ
‘ FIBRO WARRIOR, My New Normal’
https://www.facebook.com/FIBROWarriorMNN/