Your Wishes

What do you want, when the time comes, and your loved ones have to say Good-bye to you? 
I would like a DNR to state that, if I’m brain dead, or need machines of any kind to keep me alive for the rest of my life; to donate every viable organ possible once I’m gone, to be cremated instead of buried, a modest funeral if any at all.

What do you want? Does your spouse/significant other, family, or close friends know? And if you don’t have documentation of your decisions, do you think they’ll have the fortitude to carry out your wishes? 

Imagine that time being now, and your loved ones can’t come to agree on your departure. Are you married, a fiancée/fiance, a domestic partner, or single, etc. If you’re not married, your partner won’t be able to carry out your wishes, and your parents/family members will be left to decide. Even though you’ve made your wishes clear to your significant other; if they’re not recognized by law, they’ll have no say in the matter. Then will your family’s decision be from the heart, or from the head? Will they be swayed by religion? Do they really know and understand what it is you truly desire? It’s a tough subject, I know…

I think about these things, because I’m aware of my mortality, now more than ever. Dealing with a debilitating illness does that to you. You fight day in and day out to try and see things through rose colored glasses, so that you won’t let reality knock you down as it so often does. I’m not saying I want to live in a fairytale, oh quite the opposite. I’m acutely aware of life’s trials and tribulations, and that it is rarely what we dreamed it would be, as we did while we were once young.

Still, I strive to stay as positive as possible, and always look for the good in people/things. Only some days are just simply more of a struggle than others. Each day, I put on a smile when I see people, even on my worst days, because I don’t want to bring others down with me, and I definitely do not want to be pitied! But what I  do want, is to be understood, appreciated, and liked/loved for the person I  am, beneath the pain.

*a special nod to my dear friend “D” . We had this type of conversation recently ♡

Fibromyalgia… I have it, or rather, it has me, depending on the day. I’ve pushed myself too hard all of my life. I was Miss “I’ll do it myself“, if I wanted it done right. So now I pay the price! Oh yes, I also have a serving of arthritis on the side. What they originally thought was only Osteoarthritis, turns out to be Rheumatoid arthritis. Not to mention the list of other issues that seem to come at Fibromyalgia’s becon call. If you don’t know any better, you’ll think you’re that one in a million person, that has completely separate illnesses/diseases/disorders (I did!). But no, they are all Fibro’s gift to us. Kind of like a “Thank you for attending!”, but we aren’t allowed the option to decline the gifts.

Not knowing it’s exact reason for choosing me (us), is a bit frustrating! I’m able to check all of the boxes… 

✔I have had the childhood trauma/sexual abuse (friend of family).

✔the severe viral illness as a teen (strep throat).

✔the traumatic surgery as a young adult (emergency c-section).

✔the divorce in my twenties (too much to list).

✔the loss of a spouse/loved one in my thirties (brain tumor).

✔having to quit working in my forties (relentless bronchitis). 

✔And finally the complete loss of who I once was (beloved independence)… 

And it seems that with each one I checked off, my pain did increase. Isn’t it funny how hindsight works?

Sadly, most of us have had significant others, friends, and/or family members, who have left us to fend for ourselves. Because for many, this illness is just too much for them to handle. We only have each other  Fibro Warriors –  to look to for love and support. Only a few of us are fortunate enough to have someone who will stick by us through it all. I am able to say that My Love has stood by me; together 10 years now, and I’ve been too ill to work for the last five. We both fight this illness, as well as fight to stay strong together. It cannot be one-sided! If you’re not willing to make the effort, it’s that much harder for someone else to fight for/with you. Be the warrior I know you can be! I will proudly stand with you. And on those days you’re struggling, I will still be by your side… ready to lift you up if/when needed.

This is my life, my thoughts, my struggles… 

 I have more takes of woe. But I’m aware others deal with, or have dealt with, far worse than I, and I’m humbled by that. I’ll share more another day. Until then, always remember…

You are not alone! Love you all 💜💋

*Our podcast is released each Saturday on our ‘FIBRO Warrior, My New Normal’ Facebook page. This week we discussed My Loves perspective on our fight with Fibromyalgia, before and after my diagnosis. Thank you for listening, liking, and sharing, our weekly podcast/biweekly blog/monthly vlog.

Listen to Fibrowarrior #6 – “My Love” w/guest Bill Jubran by FibroWarrior-My New Normal #np on #SoundCloud

My Darkness…

Despite the title, this actually has a positive message.

I’ve struggled with depression almost my entire life. I’ve had to work so hard to stay in the sunlight, and avoid the darkness, at all costs…

I am one of those unfortunate people that cannot take antidepressants, because they actually make me suicidal instead. I’ve hidden my depression from most everyone throughout my life, not wanting to hear the negative comments, I’ve so often heard people say about others. Depression has always had a stigma attached to it, so who would wan’t to reveal something that damaging. Having pain on top of that since my early teens, hasn’t made my road easy, by any means. I only recently (past 3-4yrs) have been able to be open about my depression/Fibro, as well as my  multitude of other health issues. Its been a long, lonely road… and because I know how truly awful it is to feel so alone, I go out of my way to try and help others to feel more loved and understood. It’s not an easy task to be any one of us here, and to walk in our shoes, of this I am certain. I’m very sensitive on occasions, and could cry for the simplest of reasons, yet there’s other times when I know I should be crying, only I feel nothing, just emptiness. It’s such a roller-coaster of emotions! 

Today was actually a very tough day for me… but my determination to stay here on this earth for my loved ones keeps me going. That darkness follows me everywhere, just waiting to take over, but not today! I have really amazing things I’m trying to accomplish now, by helping others. That’s extremely important to me, so much so, that I’m pushing myself harder than ever. 

Here is a link to one of our podcasts, where I touch on depression, as well as other things that are connected to Fibromyalgia.

Everyday is a battle for me/us (FW) in some form or another, so taking it one day at a time is key. 

It’s either the allover pain that can just suddenly take your breath away…

or the need to get up and start your day, but your body just doesn’t feel like cooperating…

or of course the depression that sets in for some reason, and sometimes, for no reason at all…

or the need to get anything mentally challenging done, but your brain is on strike…

I could go on… no seriously, I could. And if you are one of my warriors reading this right now, I know you understand the struggles with living “life” one day at a time. There is no “making plans” in advance, because we have no idea how we’ll be feeling from one day to the next, so we miss out on so much, with our family, our friends. But I’m still fighting… fighting to live, fighting to laugh, fighting to love… and most of all, fighting to be heard! Hear me! I am not well, no, I’m not… but I am here, I am strong, and I am determined, to spread #FibromyalgiaAwareness and retain the belief that we will find a cure someday! I am a 47 year old (48 on March 10th), purple haired, Fibro Warrior! 

And to those who don’t/wont’t/can’t understand us… They can love me, or hate me. This is me, and I don’t plan on changing any time soon!

You are my Fibro family, so remember… You are not alone! Love you guys 💜💋

You can find all things ‘FIBRO WARRIOR, My New Normal’ on our new Facebook page: @FIBROWarriorMNN, or contact us by email at: From left to right: (me) MJ Aragon – podcast host/blogger/vlogger, Tony Jefferies and Jojo Myricks – my producers, and Christy Ortiz – my (occasional) co-host. 

My New Normal 

Hello my fellow Fibro Warriors! The post below is what sparked my idea to write a blog, as well as a podcast (already recorded 3), and a vlog to come, same name). I have Fibromyalgia, along with many other issues attached (like Rheumatoid arthritis, Migraines, allergies, vertigo, tinnitus, etc.), and I slowly began to share this with my friends on FB, only a few years ago. Just a lil at a time, because I wasn’t sure how well received it would be… worried that it might be a subject people wouldn’t care to hear about, and/or that they may just stop following me altogether. To my surprise, with each post, I received positive feedback, along with private messages, thanking me for sharing, how it helped them get a diagnosis, and how much they related to my story/journey. With each post I’d share a lil more, and this post I’m sharing today, is the one that lead the way to ‘FIBRO WARRIOR, My New Normal’, a podcast I began about 3 weeks ago, as well as this blog, and vlog to come. I have an amazing crew working with me! My Producers: Jojo Myricks and Tony Jefferies, my Co-host: Christy Ortiz, and myself as Host. They are the most supportive and wonderful people, I couldn’t ask for more. 
This is my journey, and I want to share it, because it’s important for others like myself to know that you are not alone! You can also hear me read the post to follow, on my ‘FIBRO WARRIOR, My New Normal’ podcast Episode #2  subtitled “My Inspiration” on SoundCloud. Episode #1 “Pilot”, is also available, and Episode #3 “Our Existence” is on its way.

So here it is, the FB post that helped spark it all.

​I’m having a great day today! You might ask yourself, “Why should we care?” Or “Is she bragging?” Oh, quite the contrary. I’m not on any great adventure, nor am I accomplishing some great feat… What I am doing though, is feeling good about myself, which I don’t do often enough. When you’re dealing with pain/lethargy/depression/cognitive issues on the daily, life just becomes one big blur, with each day just bleeding into the next. When I’m feeling up to the task, I try to do more than I should, then I inevitably pay for it over the following 3 days or so. It’s a vicious cycle that I’m all too familiar with. Today though, I’m not going to overdo it… Instead, I’m going to take a moment to share a lil about my journey with an invisible illness. This may become lengthy, so if you’re not up for that, you should exit now. You’ve been warned… 

Very frequently when you see me, I have a smile on my face; hiding whatever I may actually be feeling on the inside, while trying to enjoy myself, engage in conversations, and make that particular day/night have some meaning, which is not a small task for me. What most people do with ease, I now struggle with more often than not. I’m lucky if I can remember what was said to me a second ago, or if I can get the words out of my mouth, that seem to constantly get stuck in limbo amongst the clutter that is now my mind, or what’s left of it anyhow, and to think I was once fairly smart. I was actually made aware of this fact in 5th grade, when my teacher apologized to me… He had actively put me down, and at the bottom reading level, to make his point. I quickly surpassed all four levels with ease, as well as completing six books ahead of the class. When we received our SAT scores (I believe), I ranked 4th year college level in reading and vocabulary. I was proud, and to my surprise, my teacher pulled me aside and apologized profusely for his injustices. I’ll never truly know why he treated me so poorly at first. Was it seeing a white girl with a Hispanic last name, that may have rubbed him (my white teacher) the wrong way… just a theory of course.

But I digress… 

My point is, that now I feel like that fifth grader, before she discovered how smart she really was, and always questioning her self worth. I literally avoid conversations when I’m struggling with cognitive issues. So if I’ve ever seemed distant, this is possibly why.

It’s difficult recalling how I was once a social butterfly during my 20-30’s, putting myself out there and trying to stay in the moment. I miss that lighter, sarcastic, funny girl. Where has she gone, I often wonder? I was successful for the most part, staying positive, allowing myself to enjoy the sunlight and avoiding the “darkness” at all costs; a cloud that has relentlessly follwed me throughout life, and has given me more than my share of angst. But I was strong enough to push through it, not very gracefully at times and always with a few scars to remind me of where I’ve been. Still, I pushed myself to be happy, productive, and to be a good person, mom, sister, daughter, friend, as best I knew how. On the outside looking in, you may have interpreted it differently, and for that I understand and apologize. Things haven’t exactly come easily for me, I’ve worked hard and pushed myself to my absolute limit! Always, always, an uphill battle for me.

Since 3rd grade on, I was constantly involved in some sort of sports or outside activity, unlike anyone else in my family; a bit of a Tomboy. I developed early though, so that wasn’t ideal for someone who does a lot of physical activities. The pain began somewhere between the ages of 12 to 14 yrs old, but still I stayed active. Initially I thought it was growing pains, but my description varied greatly from my friends accounts. I didn’t have a close relationship growing up with my mom and pop (step, but still my pop), so I kept it to myself. Often thinking they’ll assume I’m trying to get out of my multitude of chores anyway. I was a kid, what did I know? Now in hindsight, I realize I should have spoken with them, regardless the outcome. But then, much like now, I’ve kept my pain to myself, not wanting to burden others. 

Continuing on as a young adult, out on my own… I would eat healthy, worked out, didn’t smoke or try/do drugs, and if I drank I had water in between drinks to stay hydrated, rarely having more than two. I’ve lived my life pretty healthily. But my body had other ideas in store for me, and no amount of determination on my part, was going to detour my illness from wreaking havoc on my life. So as you now know, Depression/Fibro took ahold of me at a very early age, so my teen years are not looked upon with much fondness of course, nor my childhood for that matter. I’ve always felt a bit of a disconnect from my life/family/friends, as if I don’t belong here, and I always assumed I wouldn’t be long in this life…

It’s easy to go dark, when you’ve lived your life in pain, not wanting to share that darkness, knowing it will scare most people (away), and inevitably cause them to either feel sorry for you, or say that you’re weak and needy, amongst a host of other negative things I’ve heard/endured over the years. None of which you’d hope for, especially when so many of us are uninformed about illnesses like mine. I’ve become accustomed to these types of reactions, and I want you to know that I’m quite the opposite of “Weak!”, because it takes a certain kind of personal strength, to acknowledge your obstacles and overcome them, over and over again. This cycle will never end for me, and my loved ones will have suffered the most because of this. Hence why I’ve chosen to keep them at arms length for the majority of my life. Their having to endure my ups and downs couldn’t have been easy either, not truly knowing what I’ve been living with internally/invisibly. It took me years to begin to share this struggle, without worrying what others may think. This is me! I have honestly done the absolute best I could, although it didn’t always appear that way, I’m aware. Through it all, I’ve learnt one very important thing… to love myself first. Enough so, as to not be ashamed of what I have endured throughout my life… Fibromyalgia/Arthritis/Depression/ADHD. It took almost a lifetime to get my diagnosis for Fibro, which lead me to feel embarrassed and/or like a hypochondriac, as each Doctor (there were many) would tell me they couldn’t “See” or find anything wrong with me. I even gave up  for awhile (~6yrs), and only when I lost the ability to hold down my job; because I was chronically sick with bronchitis for almost an entire year, did I go vigorously in search of an answer!

Finally, the relief and disappointment I felt at the moment of my diagnosis… 

“You have Fibromyalgia. There is no cure, so this will be a life long illness.” As I watched those words fall from my Doctor’s lips, my heart felt light, then it instantly took on the weight of a boulder. The words “No cure”, kept playing repeatedly in my head. My depression quickly overcame me. The next year of my life suddenly vanished before my very eyes. 

Oh how sorry I am for checking out (in a sense), for letting it take me away from those I love. I didn’t want to do anything anymore. I kept getting bad news after bad, from each Dr I saw (11 or 12 in that one year). It was sucking the life out of me, and if it wasn’t for my love for Bill, my two sons, my family, I may have checked out completely. Who knows?

Fastforward, 6yrs later…                               I’ve come a long way from then, researching and learning how to live in “my new normal.” So, “Today is a great day for me!”, because I can appreciate the sunlight, and my clouds, however briefly, have dissipated. I may not be able to show it always, but my loved ones mean the world to me! Thank you all for being in my life and showing me love through it all! 💜 MJ

*Apologies for its length. But hopefully my story will help someone out there in need. I’m here for you. You are not alone! Love you guys 💜💋