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

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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/

FWmnn’s One Year Anniversary!

Celebrating our 1 Year Anniversary Today! 

We appreciate you all so very much for sticking by us, telling your friends, sharing the podcasts and blogs, as well as for just being the amazing Warriors that you are! Your love and support has been overwhelming, and we’re simply greatful to share it all with you. The list below includes the Season One Finale, and a behind the scenes FWmnn “Outtake: Why I love…”, so I hope you enjoy them. And remember,
              

You
are not aloneand neither am I!

Love
you all πŸ’œπŸ’‹ MJ Aragon

Tony
Jefferies and Jojo Myricks

FWmnn Outtake: A sneak peak into
why I love my producers. Enjoy! YouTube: https://youtu.be/bwdl_erPC2c

#FIBROWarriorMyNewNormal #FibromyalgiaAwareness #ChronicIllnessAwareness

FWmnn Outtake:A sneak peak into why I love my producers. Enjoy!  #YouTube:https://youtu.be/bwdl_erPC2c

Season One Finale S1E28 – “Rants and Raves” #YouTube: https://youtu.be/ubY4Oz4LoZI

S2E1 “What’s New for Season 2”
#YouTube: https://youtu.be/-NmHv4Hn2jY

S2E2 “Self Reflection”
#YouTube: https://youtu.be/zHhFhIJrLnE

S2E3 “PSA, Positivity, Lupus”(on YT next week) #SoundCloud: https://soundcloud.com/user-836634847/fibrowarrior-s2e3-psapositivitylupus

S2E4 “Possibilities, Concerns, Ideas”  (YT next week)
#SoundCloud: https://soundcloud.com/user-836634847/fibrowarrior-s2e4-possibilities-concernsideas

90’s song: “Love Hurts” Written and performed by: MJ Aragon 

Host/Blogger/Vlogger: MJ Aragon.      Producers: Jojo Myricks (Audio) and        Tony Jefferies/W.I.S.D.O.M, Ent. (Video)

*Each week I may read/share a FW’s journey, poem, blog; anonymously if needed, or on occasion have a guest/call-in. We love for people to share their journeys, it will make you feel good, and will help our listeners feel even more connected. If you would like to to submit your story for me to share, or would like to be a guest/call-in guest. You may private message me or send it our official email:  MJfibrowarrior@gmail.com

Here are My Thoughts…

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3197545/

I just read PMC, my friend Nicole shared with me recently. It’s sad that they only had a pool of six women to extract info and experiences from. And there was no mention of connected illnesses what so ever. Hmm…

I wish they (Dr’s/Scientists) would take time to find and understand the source/trauma. Heal us by effectively, searching our minds/bodies, instead if throwing medications at us for each and every symptom. This is only making things worse, and the meds are only a mere bandaid at best, while bringing along their own set of problems/side effects. Avoidance of things like processed foods, unhealthy environments; IE, stressful, abusive, chemical, as well as getting allergy testing, because eating and/or breathing in these things we’re allergic to, adds to our cognitive dysfunction, our weight gain, and our excessive lack of energy. I’ve found that all of our Fibro journeys begin with trauma, whether it be physical, emotional, sexual, chemical, or viral (all of these cause trauma to our bodies). So they need to find and go to the source, working their way forward, instead of this ass backwards method of pumping more meds down our throats, and telling us that we’ll feel better. We really don’t! And most of the time they are just masking the symptoms, treating them individually. Oh and don’t forget the meds they give us to combat the other meds side effects! Really! Are you aware, that there are some of us whom are on a multitude of meds, upwards of 29 that I’ve heard of? 29? That’s just insane! Now I can’t just tell my friends/followers, 

“Hey, you’re taking way too many meds! Why not get off of them and try a different route? One that means you can no longer eat whatever you want, so no processed foods = inexpensive, only organic = expensive; translating to even less money in your pocket, which is yet another sacrifice. And, that you will have to suffer a lil more first; only taking one or two meds now, which you will have to wean off of every so often and then back on, whenever they become less effective; to avoid an ever increasing dosage, before you will feel any improvement. That you will have to reopen old wounds (physical/mental), endure more poking/prodding of our brain, spine, etc., while all you really want to do, is continue to take your meds and eat your comfort foods, because thus far it’s your security blanket, and the only source of help (although minimal), that you’ve actually found some relief from. 

And Opiates, that’s a whole other issue! Let’s add a very real and possibly deadly addiction, to our ever growing list of ailments.” 

Yeah, no one wants to hear that from me, a non-medical educated podcaster/blogger. Aside from my own study of medical journals, google, and personal research questions, all I can do is suggest, and hope that what I talk about, will resonate with some of my listeners/followers. Because I can only speak from experience… my own, experiences. I still struggle as well, especially with depression, so it’s not like I’m some miracle worker, whom has found “the Cure.” I’m just one person, doing what I think is best, for my body. Still searching for the source of it all, although I have a very possible idea of it, and the hope that I will one day find an end to my pain… to all of our pain!

Ok, sorry for the rant. I’ve had an eventful day, while still dealing with my continually added health issues. More news today. But, I’m staying as positive as someone like us can be, and pushing forward. I’m finding it difficult to engage with anyone, on posts etc., lately. I just don’t have the energy. 
I wrote this on Mon 1/8, and I’m in even worse shape today. My BP is rising again, and I don’t need this stress. Staying healthy is hard work! Hugs πŸ¦‹ 

*PS – Theres further explanations in comments if you’re interested, as my dear friend Kim asked for a lil more insight.

You are not alone… and neither am I!

 Love you all πŸ’œπŸ’‹MJ

FIBRO WARRIOR, My New Normal, on Facebook:

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

I’m BrOKen: Your Words carry weight, a PSA on Chronic illness and Depression/Suicide

Hello Fibro Warriors, please share, it would be truly appreciated! You may save a life, and that’s no small feat.

Here it Is! The secret project we’ve been working on. It’s a PSA on Chronic illness, Depression, and Suicide – ‘I’m BrOKen: Your words carry weight’

It’s the most needed time of year, for this message to be heard. So please, help me get this out, by sharing it with EVERYONE and EVERYWHERE! This has been a long time coming. Thank you all so much! πŸ¦‹

Because your words carry weight

You are not aloneand neither am I!

Love you all πŸ’œπŸ’‹MJ

#FIBROWarriorMyNewNormal
#ChronicIllnessAwareness
#DepressionAwareness
#SuicideAwareness
#FibromyalgiaAwareness

YouTube:

https://youtu.be/0ll-a1sVnwg

You may share the original post from my FB page
FIBRO Warrior, My New Normalhere πŸ‘‡

https://m.facebook.com/story.php?story_fbid=1540040286074412&id=1261947853883658