“My Letter to You” 

My Dear Fellow Fibro Warriors

“Darling, I am so sorry…”

•Yes “sorry“, we use this word too often, I’m aware. But I truly feel that way, when I’ve missed something, or someone’s cry for help. I try to remember everyone, and reach out when I can, but alas, I am only one person, so I miss things unintentionally, and then inevitably I feel terrible, when I’ve discovered that I have…

“I wanted to see what was going on with you? I know you and I are not best pals and that the distances between us are great, but please know that I’m here for you, if you need a non-judgemental ear and/or shoulder.”

•That’s what we should do for each other, because not everyone will.

“No one, shares their true selves on social media, it’s let’s “keep up with the Joneses“, or “one upping“, or just simply putting a “pretty mask” over what we are all really dealing with. I am a private person, and I have only recently been able to share the truth with everyone, on my FWmnn podcasts/blogs. It is with much trepidation that I share some things, especially when it comes to my children. That’s the toughest and most heartbreaking thing to share. But I know that sharing those things, can help others, as well as allow them to see that I am true and trustworthy, because in this climate and social media nonsense, people feel more disconnected than ever!”

•Our truths shall set us free…

“I feel what you are going through; been there, and I can’t honesty say, I will never be there again, because we just don’t really know what life will throw our way, at any given moment. Life is a crap shoot, and we just have to figure out how to navigate through this rocky terrain.”

•During our journeys, there will be flat/straight roads, but we should be here for each other during all of them, especially the toughest terrains. That’s when those less experienced, will fall to the wayside.

“I hope that you haven’t let those less than worthy people in your life, have any more of an impact than they F’n deserve! You are YOU, and no one can understand your trials and tribulations more than we can. You have to be knee deep in the crap, before you could even begin to have a concept of what strength it truly takes, to pull yourself up and out; when after all, it would be so much easier to just give in or give up! On my darkest days… I have to WORK to stay present, to stay around for my loved ones, whether they believe me, believe in me, or not. It’s so tormenting to know, that the ones you love the most, could seemingly care less. We have to climb up and out everyday, because our illnesses, etc., tear us down and try to put us under, every night. I know how strong you are, and not just as a “woman” or a “man“, but as a person, whom tries to take on the world, helping those they can, while trying to stay possitive, sane, happy… all by ourselves.”

•We all try so hard to be present. So be proud of yourselves!

“You are not alone, you are loved, and I am here for you; if and when you need me. Love and hugs to you all, my darlings!”

“FYI, please feel free to share this with anyone, because I am not afraid to speak my mind, nor share my thoughts with others! Remember to… 

Be open, feel free to cry when you need, and then be the strong person we know we are!” 💋 💜 MJ

•This was mostly a message I had sent to a friend the other day, whom is struggling like we are. But after writing it, I realized that this is how I feel for, and about, all of you! So this letter/message is to all of my fellow Fibro Warriors, young, old, male, female, every race, religion, orientation, etc., I am here, I love you, and with open arms I embrace you. You are my family, and you are truly not alone! Love you all 💜💋MJ
#FibromyalgiaAwareness

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Recieved the new canvas of my logo! 💜

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“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 off of the wall; only the shoe was also full of holes, and humpty’s peices were 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. The Princess and the Pea comes to mind, the power to detect a pea beneath twenty mattresses and twenty feather beds, pretty impressive I’d say, haha! We do feel that sensitive at times, no kidding; many a sleepless nights for this gal!

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

These days we can be left feeling more like the eccentric Miss Havisham, from Charles DickensGreat 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!

Youre not alone! Love you all 💜💋MJ
#FibromyalgiaAwareness

FIBRO WARRIOR, My New Normal
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, 

since, 

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 became 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. 

So, 

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

But, 

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 to 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, that 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, whom 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? 
Nothing…

You’re too late…

You didnt care enough

to know me.

MJ



*This illness has cost me what I love most! 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 difficilt 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 near by, and the ride was comfortable. Crisis overted! I was anxious to see my darling friend, her son, and 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 13yrs 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 bring about this melancholy sensation, and it catches me off guard on occasion. I have difficilty 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 afterwards…

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 dear brother recorded for me; to be made into several DVD’s, 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 recieved them, I immediately sat down to watch…
It was endering and lovely, to see everyone, happy, smiling, laughing. At the end, there was something more… My brother Jason, 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 will 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 awhile. And 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 returned 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, 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 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 

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“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 chose 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 its 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. 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 breifly? Our lives are filled with all things Fibro related, and as warriors, life can become so… 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 my self 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 getaway from my self inflicted 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) everyday, 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“:

 https://youtu.be/eKhIqpNYyQs

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 whom 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 it’s mercy. It hurts my heart when/if I cannot 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 what ever 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

#FibromyalgiaAwareness 
FIBRO WARRIOR, My New Normal

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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, 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

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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, 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

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