Helplessly Sleepwalking Through Life

-Stifled by those dark clouds

It’s as if you’re helplessly sleepwalking through your entire life. Within a perpetual dream state; more accurately, a nightmare. You’re lost, never having ultimate control over the path you’re taking. Knowing something isn’t quite right with you, but you’re unable to pin point what it is, where it came from, why it’s happening to you…

You cannot explain it. But it controls you. Relentlessly testing your strength to push forward. Searching for an answer that never reveals itself. Slowly it drains the life from you. Ineptly you fight back! But it only takes you down more quickly. Even the most brilliant doctors seem to be missing pertinent pieces to this neverending puzzle; depicting your state of health.

You push yourself further and further away from those around you. Tirelessly fighting for some understanding, empathy, yet you find there is none. You’re so misunderstood, that your efforts only dig a deeper hole. You become careless about yourself… And why should you care? No one else seems to. Fighting this invisible monster takes every ounce of whom you once were, and devours it down to your very marrow.

You’ve not only lost yourself in this cloud of uncertainty, but those you love most in the world as well. All the while, others that wish you unwell, devote themselves to tarnishing your character. Because they only see, and fervently point out, what they want others (especially your children) to see. Never realizing that they are punishing your children (whom they claim to supposedly love), with even more pain than they could ever inflict on you. Because nothing could be more cruel, than this unseen demon causing the deterioration of your health, mental state, and in whole… your life. Thus leaving that weight they’ve so carelessly placed upon your children’s lap, as an obstacle; one with which they will have to fight to overcome throughout their lifetime.

Yet, we try and try again to open our loved ones eyes. Only to be disappointed and often slapped in the face; by their unwillingness to understand, to realize their misinterpretations, and to forgive. We may or may not succeed in lifting the veil for some, but there will always be that one, or two in my case, that will be lost to me; forever it seems. The two that I love more than the value of my own life. Yet they will never know, because they were brainwashed by another. An unfit figure, in their lives. If I had only foreseen the damage that was being done.

I will forever be haunted, tortured, and left empty by this loss. I have no fight left in me to overcome it. There’s just this gaping hole, where their love once flourished. So I wait, exhausted, hopeless, mournful. I wait…

*This isn’t meant to bring anyone down, and I apologize if it has. Writing these thoughts and feelings down, relieve some of the weight of what I’m experiencing. If you’re dealing with something difficult, write it down. In a journal, or on a notepad in your phone; like I do. You may even make yourself little notes, as if you’re writing directly to that person. Also, I’ve understood that some take those notes and burn them, thus releasing it in to the universe. Do which ever works for you of course. I promise you, it will help. If even in the most minuscule way, you will feel a weight lifted.

You are not alone… and neither am I!
Love you all πŸ’œπŸ’‹ MJ

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See Yourself!

Sometimes being a good person, simply isn’t enough…

More often than not, other people see and do things that make themselves happy first and foremost. So they don’t always see you. Self preservation I’d guess. So you’ve become secondary, or even less… Remember that you can only do your best, that eveything isn’t simply cut and dry. We all struggle with something difficult… whether it be your health, finances, loss, self esteem, family, friends, etc., or even a combination of those things. But you have to make the choice to still be a good person, and do the right things, no matter the difficulty. Continue to be kind to one another, because those little things do matter. Do not allow those positive things to fall by the wayside, because negativity is always waiting, right around the corner. Misery loves company.

Try not to let other’s thoughts, actions, nor words, define who you are. You are worth more than the label someone else puts on you. You are a multitude of wonderful things all wrapped into one, so remind yourself of those things! You don’t need anothers approval or praises to feel good about yourself. They are nice to hear, of course. But, if you place too much emphasis on that, you’ll lose who you really are. You’ll begin to only see yourself through their lenses, so as soon as you hear something negative; it will instantly steal the wind from your sails, then you will simply dwell on that. It’s so easy to allow the negative thoughts to creep in, so try to stay vigilant. Keep moving forward. Remember who you really are! There are still good days ahead, waiting for us to embrace.

If you are one of those lucky enough to have someone truly good in your life. Do eveything in your power to treat them as well as they have you. That means putting them ahead of Everything else. Why, you ask? Because, they will always be there for you, if you do! If you don’t; you could very well lose them, and end up alone…

Sadly, in our social media world today, being alone has become the norm. Because we’re sitting behind our computers/phones, trying to find a connection there instead. It’s easy to get wrapped up in the online world, and just as easily to get discarded like trash. So place value where it really belongs. In those that truly care for and love you, in the real world, and right beside you.

This was written is for someone whom would like to remain anonymous. I hope this helps.

You are not alone… and neither am I!
Love you all πŸ’œπŸ’‹MJ

*To be clear, I’m not saying that our fibro communities are not helpful and supportive. Of course they are! I’m just reminding everyone to remember; there are those around us that need our attention and us theirs, much more.

Dreamland

As I drift off into my only reprieve from my pain and cognitive issues, I often find myself surrounded by a world not unknown to me; but simply an alternate universe, where old friends and new are all harmoniously intertwined amongst me. We are engaged in unusual circumstances; like several of our jobs of yore, coinciding as if it were the norm. For instance, I’ve dreamt of dealing Black Jack (on an actual gaming table) in the middle of the produce department in Vons; a job from my youth mixed in with my 18+ year career as a casino employee.

“Butterfly Fairy” #1 From an adult coloring book of butterflies. I colored this with fine point Sharpies about two months ago.

The most amazing part of this journey is how utterly peaceful I feel. Nothing will interfere with my enjoyment here. Paradise in my mind! Happily going along throughout, bumping into faces I’ve yet to have seen before, as though we’ve been long time friends. Seeing those I’ve lost, engaging in things that are always out of character, yet seem normal in this dreamland of mine. It’s such a pleasure to be in those moments, that I find it hard to avoid wanting to sleep the day away.

Another fantastic aspect of this for me, is that I’m able to go right back into my dream; even if I’ve been awoken by a noise or nature has simply called. I just lay back down, and within moments I’m transported right back where I was; as if it were book marked or paused, awaiting for my expected return. I’m also able to recall my dreams quite vividly at times. And I’m often amazed at the adventures I’ve experienced, whilst on this fantastical escape, traveling all over the world! On some very minute occasions; I’m flying there on my own; flapping my arms about as I ascend into the clear blue sky. This is something I know we’ve all dreamt of once or twice. It used to be quite frequent while I was young, but as I became an adult, those dreams have been replaced by more age appropriate adventures.

“Butterfly Fairy” #2 Also from the same book, and done about a month or so ago with fine point Sharpies. The sparkles are from a filter.

Ahh, the feeling of complete euphoria. It calls to me, and I’m immediately transported into another world. If I could only sleep through the pain, without the constant interruptions of tossing, turning, and adjusting my pillow… yet, I am thankful for those moments within my worry free dreams, that are always available to me; when I succumb to those three precious hours of real sleep.

Each dream may develope into a new scene with different players; friends, family, strangers, intertwined with unusual events, some recognizable some completely new to me. I’m simply in awe of what our minds are capable of. How it can pick and choose persons, places, things at random, as well as recent moments you’ve experienced. They move seamlessly, effortlessly along; as though it was perfectly orchestrated by a meticulous director. I feel so utterly privilaged to have these moments, and I hope my fellow warriors may experience this themselves. If it wasn’t for my dreams, my biggest adventures on the daily, would only include my bed and a good movie.

I painted this with acrylics, about 6yrs ago. Since I had recently bought metallic colors of bronze, silver, and gold; I decided to experiment and this was the result. Hence the reason it appears to glow!

I am currently on a flight to Maryland, to visit my favorite aunts and uncle with my mom. We are seated apart, even though I booked us both at the same time, sigh… Feeling anxious; not for myself so much, but because she’s not a huge fan of flying (Acrophobia – fear of heights). So here I sit between two lovely people (Luckily!), writing down my thoughts to share with all of you. I’m so proud of the new relationship I’m forging with my mom, and we’re excited to be on our own little adventure in real life, whatever it may be. I do know we’re definitely going to the beach, it’s our happy place!

*I wrote this over two weeks ago, and had planned on publishing it the next day… but I was so enjoying family time, that it just slipped my mind.

My mom and I did get seats together for the longer leg of the flight from Denver to Baltimore, Maryland; and we effortlessly chatted away the time. Unfortunately, the flight home was the opposite outcome; as for the longer leg we were apart, but the final leg from Denver to Palm Springs, California, we were together. We did enjoy watching the 2015 film ‘Solace’, starring Anthony Hopkins, Collin Farrel, and Jeffrey Dean, on my Kindle (a sweet gift from my aunt and uncle). If you’re a fan of any of those actors, you’ll enjoy this film I believe.

I met some very nice and interesting ladies on the flight home; the first was just a year my junior, traveling for work (super sweet and we instantly hit it off), and the other sitting with us both; was upwards from my mom’s age (she was so full of life!). We exchanged info both times, and I hope to keep in contact with them. I’m able to easily talk to strangers without any reservations, it’s a gift I guess; unless they didn’t want to talk to me, haha.

I’m limping through my day today… I’m really missing my family already, and being so far from them is awful. The first two days home I was so happy to see My Love, and still feeling up from my trip. But last night and today, I’m just down. Not out though, so don’t worry about me. I’m going to listen to an audio book (in the middle of Moby Dick), and pulling out my adult coloring book again. This helps me so much! I’ll share the results when I finish the picture. Tah-tah for now!

Wishing you all a lovely pain free day my Fibro Warriors! And remember…
You are not alone… and neither am I!
Love you all πŸ’œπŸ’‹ MJ

We Forget Who We Really Are Beneath Our Illness

We forget who we really are beneath our illness… often only seeing the ugliness that it imparts on our very being. When I look into the mirror, I don’t think “Wow, I look great today” or “I really am as beautiful as I’ve been told”, haha. No, not even close! Those thoughts have never crossed my mind, nor of course, my lips. But there was a time in my life that people only viewed me from the outside, rarely taking a moment to find out whom I may truly be. They judged the cover, and merely peeked at the pages in between, leaving me to go the full distance to show them “MJ.” That’s not completely different from now, but simply that they don’t see my illness, only the cover (which is our shield) our “Smile.” Yet, what we see in the mirror; are the pages reflecting our pain, cognitive issues, and sleepless nights…

We no longer see our “cover.” And if you’re anything like me? You’ve discussed Fibro and all if its counterparts, until you’re without breath! So all others see now, is a Big Purple Fibro Ribbon waking around. Seriously! In my effort to spread awareness, my friends, and (most notably) my improv family; because I see them regularly on Monday’s and during monthly shows, usually refer to me in relation to Fibro. It’s all in good fun mind you, and I don’t mind it at all. But I’ve become cognizant of the possibility that maybe, people are not seeing the strong, intelligent, compliment appreciating woman, that’s carrying that heavy ass ribbon around!

My Love tells me how proud he is of me, how my blogs are impressive (yes, I’m aware he could be embellishing a bit *blush*), and that I’m beautiful/pretty even though on most days I’m sans make-up. The love and support is immeasurably appreciated. He is the one that champions me to show my sexy side, only I’ve forgotten what that is? I cover up more often than not, for sun safety of course, but also to be taken more seriously, and not seen for only my curves. Fibro is serious business. But in accomplishing all of that, “Am I sending the wrong message?” That our bodies are meant to be hidden and not appreciated, and what we are to perceive as beautiful, is the airbrushed, picture perfect models on magazine covers, and the fit actors on popular tv/movies. That our intelligence is written down in scripts for us to simply parrot back as if it’s our own, or that our strength is merely perceived as an illusion, while we lift those paper mΓ’chΓ© boulders over our heads. Our society is improving however, as we are beginning to see more and more… the curvy, clever, and wonderfully empowered people, that deserve to be complimented and appreciated as well.

So here I am… in a bikini pic My Love took (below). I’m in the shade of course (diag. w/skin cancer 5yrs ago), exposing myself a bit more than usual. I am not perfect, but I am me! Loved just the way I am, as I do him. So please embrace yourselves, and don’t allow Fibro to define you! Show off your attributes! I’d share a picture of my brain instead (MRI), but that might get lost in translation, hee hee. All of us! Man, woman, and child… have brains, braun, and beauty. We are empathetic, worthy, humorous, involved, useful, productive, creative, generous, supportive, listeners, kind, loving, independence, strength, and togetherness. We are a lovely mosaic of warriors that have been broken, yet were able to create a more resilient bond, that only we can comprehend.

A special thank you goes out to my Fibro Warrior friends, for responding to my DF post and sharing your attributes with me! Linda S., Tina H., Rachel W., Phroncheska T., Maribeth R., Charlotte B., Tricia W., Christine K., Julie W., Mitzi M.B., Nancy S., Marla L., Debbie J.D., and Shannon K. Apologies if I missed anyone 😊

Thank you all for your love and support!
You are not alone… and neither am I!

Me vs the “perfect” model/actor

The Things I Really Want to Say

The things I really want to say or scream out rather; on occasion anyway, would scare away the mere novice. But, if you’re like me, and have dealt with anything that has plagued you for nearly your entire life, a few expletives are expected. So, do you know what it’s like to always worry about everyone else’s feelings, aside from your own? I don’t mean every second, I’ve slipped at times and said what I felt, only to realize that I should have kept my lips sealed. Not everyone can handle the truth.

The rest of the time, you’re playing chicken with your truth, because you don’t know how to explain what’s happening with you… to you, and that’s tricky when others are counting on you to be there for them. You try to be the best person you can, and hope someday that you’ll be honestly understood. Only that day never seems to come, and so you bury yourself beneath all that ails you. Knowing that they’ll never truly comprehend it, unless or until, it has happened to them.

Pointless hours, days… years even, wasted; by keeping your real thoughts to yourself. Knowing you are a good person, standing behind this wall you’ve built, because no one understands you. Hell, it took nearly my lifetime to comprehend what was happening to me. Each month, year, decade… passing you by, with more of life’s gifts piling on, as you move through your maze; built for only the strong, trust me.

Never realizing how strong you truly are, until your fortitude has been tested over and over, by those boulders and logs. No, not sticks and stones; that’s child’s play. I could have said, “Enough!”, many times in my life. I worried that I would someday. That my sons would find me. This being one of the reasons I have pushed myself, pulled myself up, and out of the darkness… For my sons.

The best parts of me are in them. And I can only hope that the worst parts; ie, my health, do not take over, Ever! I wouldn’t wish this nightmare on even my worst enemy (there’s only one, most of you might have guessed), because no one deserves this. I want to protect them from this, from me, from the darkness. They truly have no clue as to the torture I’ve endured. I’m not saying others have not had it much worse; we all have our own forms, just to be clear, and my heart aches for those that do. But this hasn’t been a game, nor a fairytale, of that I’m certain.

To those that see my struggles and think, or say, that I’m weakF*** You! I am STRONG, I am a WARRIOR, and you are the weak one, for thinking for a second that you’re better than me because you were lucky enough to have good health, physically and mentally. How narcissistic are you to think that better health, makes you a better person, or on the other spectrum, to simply deny that someone is having heath problems, because you “Can’t see them!” Genetics do not make you a good person, your actions and thoughts do.

I am who I am because of my struggles, and no matter what anyone else thinks, I am proud of whom I’ve become, and although I wish I could have had a better childhood, a better life, better experiences… I wouldn’t change the person I am now. I’ve learned to have even more empathy, given and recieved more love, and I have learned valuable lessons, that only a difficult life lived, may give you. Honestly, I had never thought I would see forty years old… let alone 50, right around the corner; next year.

I’ve grown leaps and bounds recently, and even now; struggling as I am, I’ve been able to stay from beneath those clouds. The darkness that’s eternally waiting for me, just below the surface. I’ve healed my relationships with family, now waiting for the right opportunity to heal my most valued relationship(s). This will take time I know, and I’m being patient; although it’s quite difficult.

If you’re like me… remember your worth! Value yourself, and not with the value that others have placed upon you; but with your own true self taught virtues. You know they are there, you just have to look below the surface. You are stronger, brighter, priceless even. You are a WARRIOR, just like me. Together we are indestructible!

Your not alone… and neither am I!
Love you all πŸ’œπŸ’‹ MJ

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

Childhoods Stolen

Mine, and quite possibly yours as well, and if so, you will relate I imagine.

After I originally wrote this, I later realized, that my title would reflect a feeling of loss, like we’ve all felt, and have continued to feel after these deadly school shootings. Although I am wrapped up in what’s happening with my health, it is not lost on me, that this devastation has continued to weigh on our hearts and our minds. There are no words elegant enough to express my feelings on this matter, so I will only say this to those most intimately impacted by this horrific loss of lives, “My heart goes out to you and yours, for any loss is deeply felt; but the loss of a child, that is just simply unbearable…” And to everyone else I say, “Choose love and peace, not hate and violence.

Childhoods stolen in the flash of a moment… all of the wonderment, sunshine, and optimism whisked away, along with their innocence. Were we not worthy of an outstanding life? “Why?” We often wonder, “Why me?” Indeed. What we are unable to discern at such a tender age is, that none of it was our doing. Yet throughout life, we constantly blame ourselves. For not just one moment, but for it all. Every single thing that happens. If you’re lucky enough, you will finally understand.

Ah understanding… it’s a fickle thing really. Just when you think you do, something slaps you in the face, quite out of nowhere. Then the clouds part, and you realize that there is still something missing; that final piece of the puzzle. Only it is out of your grasp, hidden away amongst the clutter. If only you could find it, “I know it’s around here somewhere?“, you think to yourself.

When, if, that piece does finally materialize… there is a serenity that washes over you. A clarity above all else. After all of the suffering and self loathing, you are finally able to love yourself. “Yes! I’m free!

But no, not really. That moment (or moments) in childhood will never allow you to truly be free, as your health has been dictated by that singular instance. And although you may have recovered in many aspects, this illness borne from ugliness, will forever infect you. How do we continue to cope, when at every turn, we are met with more anguish over the next impending health issue? One on top of the other. How do we endure?

I’m fighting, I’m being strong, I’m staying possitive, but for how much longer? Not one, nor two, nor three, but now five health issues in less than three months. One of which I’m sure will be bad news; may even be bone cancer (update: not cancer!), another is a possible stroke, another may be excessive brain damage (overlooked brain shear from old car accident), and a pending hysterectomy; done by my gyno or an Oncologist (update: also not cancer, so my gyno may do it). For the finale last week, I found out that I have highly elevated liver values (almost 10Γ— the normal), and after an ultrasound as well as a multitude of bloodtests, not a reason has surfaced as to why? So off to yet another specialist I go. Overwhelmed doesn’t even cover it! I’m ANGRY!!! Angry, that I’ve tried so hard to live healthy and stay on this earth for my loved ones, only to be constantly bombarded by one thing after the next.

And worst of all… I don’t think my children know any of this, nor care to. Who wouldn’t want to just give up? It’s a lot to stand up against. I haven’t, and don’t plan to give in. But damn if the silence isn’t enticing. I don’t want for much, just a lil time with quiet consideration, that stretches on for more than a month (if I’m lucky). Give me the mundane. Enough of this damn rollercoaster I’ve been on.

Keeping up with FWmnn has been difficult, and interactions with my fibro friends have been minimal. I’m struggling, and that means I have extremely low energy. I miss you all, and please know that I’m not ignoring any of you, I just need time to process. The waiting is the most difficult part it seems. Once I know more, I will be able to share and explain. So for now, I’m around, yet in the shadows. I hope you all are doing better than I, and that your pain is minimal. Sending big, yet gentle, hugs πŸ’ž

You are not alone… and neither am I!
Love you all πŸ’œπŸ’‹ MJ

Just checking in

*(Tue 2/13) Updates on my surgery/biopsy at the end of this blog πŸ’œ

Hello my warriors πŸ¦‹ I’m just checking in… 

These last few months have been stressful, to say the least. I’m getting closer to some answers/closure though. Thursday (Feb 8th), I had Doctor appointments as well as a pre-op at the hospital; upcoming Hysteroscopy, my 2nd Biopsy (For more info, I’ve provided a link: https://m.acog.org/Patients/FAQs/Hysteroscopy?IsMobileSet=true), which also included bloodwork, and then more bloodwork at Lab Corp for a different Doctor. Such fun (Insert sarcasm)!

Today (Fri) I had to get an ultrasound of my abdomen, and it was painful, thanks to my Allodynia (for more info: https://americanmigrainefoundation.org/understanding-migraine/allodynia-when-touch-hurts-but-shouldnt/). I’ d hoped to also get my MRI out of the way, but nope, not until Feb19th. My biopsy surgery is this Mon Feb 12th at noon, and I’ll be there for about 3hrs max they said. I guess I’m more stressed than I realized; because I broke down crying at my therapist’s office (Thurs) just out of the blue; it really caught me off guard. I checked my BP when I got home after everything, and it had spiked to 165/98; so I had to take my 2nd BP med. Even if my surgery goes well on Mon, I’ll still be anxious about my MRI. It’s to view my c-spine, due to a brain shear/injury from a car accident (double rearended 6-19-13) (for more info: https://www.brainline.org/video/understanding-nuances-shearing-injuries-brain), more on this later, once I get more information from the results. Just knowing I have a brain shear/injury (discovered Jan 8th) is weighing heavily on me. I’m trying to keep it together, so as to not worry anyone, but internalizing it isn’t doing me any favors; so I finally told My Love Bill (Fri, a month later). He was really quiet afterwards, so I just started talking about other things, to get his mind back on the comedy show he had later that night. We had a good night overall, but my pain kept increasing as the night progressed. My migraine was triggered from the loud music after the show, and my neck/shoulders/back became so tense, that I began to feel that burning sensation. 

I woke up today still feeling like crap, but I had to get ready for my final appointment of the week. It went smoothly, sort of, and I decided to grab a few things from the store on my way home. While there I ran into a friend of ours, talked for a bit, and during our conversation, I could feel some tightening in my chest; suddenly I felt nauseated, clammy, lightheaded… my migraine went from a minor annoyance, to full blown in an instant. Dammit! I had been in the store for way too long, seems the fluorescent lights did their dirty work again. Needless to say I went straight home afterwards, and I’ve been in horrible shape all night. My neck brace went on; to keep it immobile, hoping it would help take some pressure off, thus allow the migraine to lessen. I’m now at a 7, instead of a 10, progress…

My Love and I, before the pain took over that night.

My Love and I talked more about my worries tonight, and as always he was very supportive. I just hate adding this burden to his shoulders, because he already does so much for us. It’s so difficult to weigh what to share and what to hold on to at times, because we never want to overwhelm our loved ones. Often we hang on to more than any one person should, imagining that we can “Do it all on our own”… when we really can’t, nor should we! It’s ok to as for help. I even have to remind myself of this, clearly (sigh). I’m still working on this, and I’ve come a very long way, so there’s that. Keeping this struggle to myself was my life’s work, so when I began to open up about all of it, these last few years, it was extremely difficult. But as time has gone on, I realized that sharing helped others, hence why I do what l do today. You guys all help to keep me strong, by knowing that you count on me, and that I may count on you in return. My journey isn’t over yet! I’m sending big, yet gentle, hugs to each and everyone of you.
You’re not alone… and neither am I!

Love you all πŸ’œπŸ’‹ MJ

*(Tue 2/13) Latest surgery/biopsy updates:

Hello everyone! This was not a Hysterectomy, just a Hysteroscopy/biopsy, to find out if I have cancer first. The Dr performing my Hysterectomy will be pending on this biopsy surgeries findings. So it will be either my gyno, or an Oncologist. So we’re not done yet. I get my results on Feb 22nd πŸ’œ

*(Mon) Update: Everything went well. My hips were killing me from the position I was in during surgery. And of course my stomach is a bit achey, but I’m crazy drowsy most of all. Can barely keep my eyes open. Just getting some rest now, and My Love is taking good care of me. Love and hugs πŸ’ž
*(Mon) This morning: Heading to the hospital for my biopsy/surgery shortly. I just wanted to drop in and say, “Thank You, for all of your love and support! I love you all so much!” πŸ’œπŸ’‹MJ
FIBRO WARRIOR, My New Normal FB link:

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