Finding peace amongst the chaos in life

Finding peace amongst the chaos in life

I always try to keep in mind that I am not the only one that is going through rough patches in life. May it be a loss, a break up, experiencing some mommy/daddy guilt, don’t understand why things happen, don’t understand how things have happened, how I got here, wish things were different, etc. you get the idea. If you’ve followed my short journey, you know that I’ve experienced life changing surgeries due to Chiari + Syringomyelia. Although many times I’ve tried to put it behind me, there is always something that happens in my day that reminds me of my disability. You know those moments, where you are trying to go about life while trying to forget other parts of your life as well? What do you do? Do you confront them head on, do you even acknowledge them? I know a lot of times we, or rather I, try to put my best foot forward, have my best attitude or simply try to mask what I’m feeling with other more prettier things. This can absolutely happen in this world that is so consumed by technology and phone applications, like Instagram and Facebook. I personally think these outlets pressure us into thinking reality is too ugly to post. But, masking reality can be so exhausting, especially for someone like myself, being a full-time stay at home mom and dealing with chronic pain. It’s exhausting! I know I vent to my wonderful therapist, but I know others don’t have that outlet, either you choose not to or can’t for whatever reason.

I grew up in a relatively strict religious home and was taught at an early age to turn to the Lord for comfort and do His holy will. At the same time and you can read more about it here, I am also a firm believer in finding professional help for things like depression, anxiety, etc. Lately however, hence my reasons for my continued therapeutic sessions have been questioning other things. Have you found yourself there? I’m there. I’m not sure where you find your peace amongst the chaos in life, where do you find your happiness, where do you find your smile, is it in your children, your religion, spouse or partner? I know at times the plans my 15 or even 18 year old self had suddenly come to mind and then reality strikes and there’re the reminder of how none of that happened. However, I also know and am reminded that, you can make many plans, but the Lord’s purpose will always prevail. What does this mean, well, that if you and I don’t see our life the way we’d imagined it, know that it is however going the way the Lord has planned it. So powerful, yet I still go back and forth with the Lord, like a small child coming back to me after I’ve told them no. Can we compare it that way? Are we that nagging child asking the Lord, why don’t things go my way? As the priest put it on Easter Vigil this year and as you can see, it struck a cord with me, he said, “do you think God made a mistake with you, do you think the bastard sitting next to you isn’t for you?” – aka your spouse. HAHA! There’s nothing like hearing a homily that delivers and gives you a good laugh at the same time.

So, whether you are religious or not, whether you seek in the Lord or not, whether you turn to prayer or not, we are all seeking the same thing, peace and to love and be loved. We are all trying to be seen and heard. If you’re in this same space as myself, I tell you, don’t give up, find support, find the courage to find your voice and ask for help.

Also, know that your struggle is part of your journey. And as the scripture says, “this too shall pass, worries, hardships, and the things of this world are temporary, eternity is forever.” And you my friend are perfectly imperfect and that’s OK.

Ana-

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Photo: Aaron Burden

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To the Stay At Home Mom, Find Your Passion

To the Stay At Home Mom, Find Your Passion

A few days ago, I  started thinking about other stay-at-home moms such as myself and the internal battles we all fight each day. So, I wanted to let you know my side of it all. As a stay-at-home mom I would have to admit sometimes staying home is not enough to make me feel fulfilled. Don’t get me wrong, I absolutely love staying home and caring for my little ones. Whether you have just begun having kids or have a large family like mine, the reality is that motherhood is challenging. Parenthood, I’d say is the toughest job, but also the most rewarding – there is nothing in the world like it. So, if you’ve had a good cry in your bathroom or in your bedroom at the end of a tough day, I’m here to tell you, it’s OK! We’ve all been there mom! This full-time, no vacations, no sick days, no days off title can quickly get you feeling blue and anxious. We all have our ups and downs. As difficult as a mother’s job is, let alone a stay-at-home mom or a mom working from home, we all have the same struggles. How to balance it all? How to stay sane? How to keep it all together while remembering yourself? And at the end of the day comes the internal struggle, did I do a good enough job with the kids today, did I get enough work done today?

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As someone whom once upon a time worked in the corporate world in the Downtown Miami area, since leaving have felt the need of doing something for me – for myself. Yes, I’m a mom, but first and foremost I am a woman, that once had interests and hobbies. Whether you loved sewing, painting, writing, exercising, they were your hobbies to do. These thoughts come from a woman whom has somehow lost herself in her role as a mom and wife. Hence this blog I began a short time ago. While I’m still feeling like a little fish in a big pond with this, I couldn’t be more excited about this new endeavor. I wasn’t sure what I was getting myself into with blogging, I just knew I wanted to write. I will tell you this, there’s a lot more work that goes into this than you may think. The behind the scenes is nothing short of a pretty mess. I have 6 littles, so most of my writing is done after bath time or bedtime. Just picture little feet running around, yelling behind you as you try to gather your thoughts! Difficult but possible – definitely possible!

Don’t get frightened, join the hustle that is working from home because your kids are still your number one priority. So, if you are trying to make it happen with a baby on your hip or trying to build an empire during your kids nap time, I’m with you, I get it! But, keep doing it, do what you need to do to get things DONE, to make things HAPPEN, get that phone call in the bathroom or closet, because lets be honest – it’s the only place we can talk with ZERO interruptions or when you’re praying to baby Jesus the U.P.S man doesn’t knock while you’re in the middle of something important. Not to mention trying to let everyone know that working from home is real WORK – maybe harder and no, you’re not flexible and no it’s not easy, not to mention trying to squeeze in some work while the kids are at home on Spring break, JESUS, yes, I know, I can relate.

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Nonetheless, find your passion mom, find what sparks joy in your heart, your interest, just find it! It’ll be hard work, not to mention you’ll be sleep deprived for a little while, but it’ll be worth it! You’ll find yourself again after having babies and it will get you so excited about life again. And know, hard work doesn’t go unnoticed, it’s not in vain. I would consider myself artistic and since creating this outlet, it has allowed me to express myself through writing – and as my psychologist put it so well, writing is free therapy! She and I are so amazed of how I’ve decided to go down this path – shocked is more like it, knowing how reserved and private I am when it comes to my life. However, this outlet has also allowed me to not only speak about my condition – which by the way 1 in 1,000 people have it! Insert shocked emoji here. But also spread awareness and allow myself to feel free to be honest and raw. I am so grateful to have finally taken the plunge on this after being on the fence for so many years. Yes, years! It’s slowly given me an opportunity to find myself again and go after dreams I thought weren’t possible. I’ve connected with companies I thought would never notice lil’ ole’ me and I have started to put my passion for art and design to use by creating merchandise. I’m working on getting Chiari Awareness and motherhood merchandise out there. I’m excited to share it all with you soon!

Finally, know it’s not cliché, you can really achieve anything you want, the only one holding you back, is you.

To every mom, the stay-at-home, the working stay-at-home, don’t give up – as the saying goes, “the days are long but the years are short,” know our little ones won’t be little for long. So, don’t be afraid to put yourself first every now and then – because when mom is happy, babies are happy.

Happy day friends.

-Ana

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Photo: Sebastien Gabriel

Chiari 1 Malformation and Mental Illness

Chiari 1 Malformation and Mental Illness

While many of doctors that claim to have experience in Arnold Chiari Malformation would still say, Chiari is more “in your head” than anything else or “Chiari doesn’t cause symptoms” –  no further treatments need to be done, I disagree. I still like to describe Chiari as an invisible illness because I look so normal to the person in front of me but even as it goes unseen, it doesn’t mean that the symptoms and pain are psychological. If your current doctor continues to tell you that, “you are OK,” do not hesitate in seeking a second opinion and starting from scratch, find a doctor that does have experience with ACM. I got a second, third and a forth until finally in my search for new doctors, it led me to a great neurosurgeon in my area. Although, I haven’t found any research linking Arnold Chiari Malformation and mental illness, my experience with the disorder has led me to believe that self advocacy and self care is essential. The need to mentally help yourself, is important. I realize that even after having had two surgeries due to Chiari 1 Malformation and Syringomyelia, the mental challenges that come after going through such a traumatic experience is one worth talking about.

Can you remember the day when men dressed in white coats – surgeons, came to your hospital bed side to inform you of your test results, followed by the procedures that you will soon have to endure? Because even after having Chiari decompression and Syringomyelia laminectomy, know that none of these surgeries are a cure, these surgeries are needed just to prevent permanent nerve damage. Also, these surgeries are not a guarantee that they will help alleviate any of the current symptoms. So, whether mental illness has a place in your life, in form of depression, anxiety, social anxiety, baby blues, postpartum depression, autism, post traumatic stress disorder, eating disorder, substance abuse disorder, please know that you are not alone. Also, I encourage you to find your voice and find the courage to get help, professional help. Because like many things, mental illness has no one face, it does not discriminate and it can happen to anyone.

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So, if we’re going to go down this honesty path and I remain true to myself, besides you knowing these tidbits about me, know that aside from being a brain surgery survivor, I have been dealing with depression, social anxiety and agoraphobia since my decompression surgery. Which according to the Webster’s dictionary, agoraphobia is a fear of open spaces, making it difficult for the person to leave their house. Please do not assume that I am cooped up in my home. It just means that it takes me a lot longer to mentally prepare myself to get out of my home and do things the “ordinary” person does so naturally. They include things like attend doctors appointments or go for a quick trip to the store. It can take days to mentally prepare myself to leave my house for a doctors appointment – at times at the end even canceling. These tasks are challenging for me, perhaps you are dealing with a different mental illness.

If you’re asking and wondering how I found all this out. Well, the turning point for me came in form of  a routine neurological visit that led my doctor to suggest I see a psychologist. Of course coming from a family where psychologists were ever mentioned, I immediately got defensive and declined. When the doctor – bless his heart, asked why, I quickly became defensive and said, I am not crazy. He then replied, “I am not crazy either and I see one, because after a 20 year marriage that came to an end, seeing a psychologist was a way I was able to cope.” This made me feel one, not crazy and two, open to the idea of seeing a psychologist. And as 2017, am now seeing a psychologist and psychiatrist, both of which work hand in hand to get me from feeling ill to feeling well. This is something hard to admit because society has placed a negative stigma towards psychology and mental health. It’s something that isn’t spoken about, it’s frowned upon and shamed. The last time I read on someone advocating on mental health was coming upon an article from singer, Demi Lovato. I think being silent on metal illness is so much worse than the topic itself. People build things up inside because they’re afraid, afraid of being embarrassed, humiliated, misunderstood or feeling the wrath that it would potentially bring. I want to embrace not only my new body that has produced six babies to which I proudly wear six scars. But also the scars left behind by Chiari. However, learning how to embrace and accept my new life after my Chiari 1 Malformation diagnosis has been challenging but also life changing. Chiari isn’t for the faint of heart. As part of my Chiari journey I want to feel free to find my voice and speak on how I work daily on my mental wellness. If you’re working on yours, never give up and if you haven’t started, know it’s never too late to start. I’m convinced this disorder is part of my life but definitely not who I am. Let me be the first to acknowledge that God continues to play a huge part in my journey to recovery – maybe not in the most ideal way because I am so flawed! My religion and spiritual beliefs have helped me in my recovery – I am Catholic. Spirituality helps in recovering from things like stress to mental illness. However, I do also believe that aside from my religion, medical help in the form of professional counseling and medicines also help. Mental illness is by no means anything to be ashamed of, seeking help in knowing how to manage it in the best way possible is important for your well being. The main goal is to lead a peaceful, meaningful life and to continue on the road to recovery, that is both spiritual and mental.

Also, know that it’s OK, it’ll all be OK, do not compare yourself to others, to other moms, dads, friends or co-workers, because to others we are either too much or not enough. And that’s OK too.

Happy day friends.

-Ana

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Food For Thought – Parkland, Fl + Syringomyelia

While I am not here to debate, I did want to share my thoughts and feelings on Tuesday’s tragedy. I had what I thought was an important appointment scheduled on Valentine’s Day but later realized something else would be of greater importance. I had my 12th week follow up appointment following my November 7th Syringomyelia surgery. As we made our way to the hospital, listening to the news on the radio the report came in on what was just transpiring in Parkland, Florida. It was all just developing and any further detailed information other than location wasn’t being said. While we waited to be seen, nurses outside my room began to talk saying there were confirmed casualties, my heart sank. When we arrived home, we were immediately updated on the horror that was happening right in our home state, a shooting in a high school. Since then my heart continues to ache and my prayers have been with these students and parents. These parents that have lost their babies on this tragic day and the unimaginable pain that they are feeling. I also woke up not wanting to send my 3 older kids to school. I thought it was too soon to have our children return to school when such horror is still so fresh on our minds. I’ve spent the day between watching cartoons my little ones enjoy and going back for updates of what is going on in Parkland, Florida. It’s been a day of sadness, frustration and disappointment. And because I don’t want to go to a place of hate or anger, I chose to spend the day in prayer – constant prayer. It’s worrisome and frightening knowing this is the world my kids are growing up in. A world in which on February 15th every parent felt a heart wrenching fear as they took their kids to school, a fear that shouldn’t correlate with school. A lot is being said about mental illness. I believe that many think of mental illness as taboo. I live with Chiari and Syringomyelia, symptoms that include daily pain – life altering pain and discomfort. An illness that doctors have said, has no cure and surgery is but a relief. All this, all of it, takes a back seat when I take care of my son whom in 2011 was diagnosed with speech delay and later in 2016 with Autism and ADHD. This is real, mental illness is real and more needs to be said and done for our children. It’s not taboo and it’s a conversation worth having if it’ll change the social custom of our society. It’s OK to have Chiari, Syringomyelia, depression, anxiety, agoraphobia, postpartum depression, baby blues, Autism, ADHD and the list goes on and on. Also, we need to stop being silent and feeling ashamed of mental illness. My consolation in times of struggles and triumphs is the reminder that I am not alone and that the Lord is my Shepard – Psalm 23: 1-6.

Xo – Ana

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In 2013 Life Began with Chiari + Syringomyelia

As short as I’d like this post to be, I have an inkling of a feeling it’ll be anything but. However, my goal is to try to be as thorough as I can, starting from the beginning of my journey with the disease. A little history of my health, as far back as I can remember as a child and adolescent, I had ongoing headaches and migraines. As my mom would later realize, she’d give me Tylenol just so that I could get through school hours without having a headache mid day. My first episode to what we know now to have been Chiari 1 Malformation, unfortunately went undiagnosed at the hospital. After many tests, I was sent home with what they said was a migraine. This is unfortunate but true to many Chiarians. So after I had a second episode we decided to now go to a different hospital. The official diagnosis came in May 5, 2013 when what was supposed to be a quick trip to the ER, would be the trip that ultimately changed my life. The reason for the ER trip, muscle weakness, problems with coordination, trouble walking, blurred vision, seeing blotchy black spots, sensitive to light, sensitive to noise, dizziness, headache, vomiting and nausea, vertigo, decreased sensation on my left side and trouble swallowing. Things like bending forward, pulling, pushing, straining, lifting became intolerable. After blood work, CT Scan and MRI the diagnosis was Chiari 1 Malformation and Syringomyelia.

We’ll go through a quick crash course for this rare disease, Chiari 1 Malformation is a condition in which brain tissue extends out of the skull causing it to press downward into your spinal canal, present at birth. What does this mean you ask, basically the brain is too big for the skull and it’s causing the brain to stick out or herniate at the base of the skull causing pressure to the spine, my cerebellar descended 12.8 mm downward.

As to Syringomyelia, this is a rare disorder in which a cyst forms within your spinal cord. This fluid-filled cyst or syrinx, can expand over time and compress and damage part of your spinal cord from its center outward. My syrinx began at C3 to the top of T2. You must know that in most circumstances, to have a syrinx present is considered to be a side effect of another problem, in my case, Chiari. The surgery that one can have to relieve the pressure in the head caused by Chiari is decompression surgery.

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What is decompression surgery? I’ll go a little more in depth with my personal 2013 decompression surgery for Chiari. I’ll give you small snippets of what was done inside the operating room. While I was fully sedated, endotracheal intubation was done by the anesthesia team. The eyes are then taped shut and I was placed on the Jackson table with Wilson frame. The head was clamped in the Mayfield 3-pin head holder and affixed to the bed. Then, moving the neck slightly forward, the hair is now clipped and/or shaved with a hair clipper. The surgeon now makes a mid-line skin incision from the back of neck area up to the head to release pressure at the base of the skull. This is done by sawing off bone, opening the dura and then closing the dura matter with a patch. The bone would not be returned back to area. Because the cerebellar tonsils descent or herniation was significant – 12.8 mm to be exact, the decision was made to shrink the tonsils. They removed the tonsils and cerebellar tissue by a few mm’s on each side. A dural repair graft was sewn in to achieve further dural compression and the dura was stitched closed. Lastly, I was then  flipped over to a regular bed and extubated before leaving the operating room. The patient would have a hospital stay of a couple days – mine was 15 days. The neurosurgeon on call the day I arrived at the ER on May 6, 2013 would also be my surgeon on May 9, 2013, surgery day. After my discharge and before my post operative follow up visit with the surgeon, I was admitted to the ER twice, both times diagnosed with aseptic meningitis also known as viral meningitis. Note that viral meningitis is more common and less severe than bacterial meningitis. I was also placed on medications to help with the anxiety that followed from surgery, pain medications and muscle relaxers.

Although I was also diagnosed with Syringomyelia at the same time as Chiari, the surgeon did not attempt to touch this at this time. He mentioned that addressing the Syringomyelia would be  too risky – but aren’t all surgeries risky?

Please keep in mind that I am not a doctor by any means and by writing this, I am expressing my personal experience with the disease. The one of many obstacles Chiarian’s face is that it seems as if no one has ever even heard of these conditions. The lack of general awareness Chiari has, has encouraged me to be a voice and help spread awareness – hence the reason behind creating this blog. Because ultimately this can become a burden – huge, to patients trying to inform family, loved ones, friends, co-workers etc., about what they go through. Where do you begin, how to even explain?! Also, as you may already know, be informed that like any surgery there are potential risks and other procedures may be needed in the future even after a successfully performed decompression.

So, fast forward to 2017, endless complaints to my neurologist and surgeon regarding my 2013 diagnosis of Syringomyelia, all of which assured me all was good. I was still since my 2013 diagnosis, experiencing ongoing symptoms, had countless ER trips, on many pain medications that I decided to make a change. I changed hospitals, doctors and started from zero. I then visited multiple doctors in different hospitals, had MRI’s done for all of them and all of which said to continue medication and that addressing the Syringomyelia surgically would be too much of a risk. Finally after having a borderline break down came a break through. I remembered and decided to reach out to a surgeon I had researched in 2013 after my decompression, Dr. Barth Green, a neurosurgeon. His office isn’t too far from where I live in Florida and so I made the decision to call his office. I had a lot of digging to do first for the neurologist Dr. Martinez-Arizala -they work in the same office. He first needed to see my medical records to determine if my case would be moved to surgeon Dr. Green for final evaluation. The process would take weeks. Yes, this is the system and this is the way things operate. This meant I had to go back to the hospital where I had decompression surgery to gather it all. I had to get all of my records, from MRI’s to CT scans, all to be saved on CD’s, this included before and after surgery, any and all medical records, operative report, all doctors notes, etc. etc.! All. Of. It. He wanted to see it all! Thankfully all was not in vain, I was called by the surgeons nurse to come in and meet with Dr. Green soon after all my medical records were sent. He had already evaluated my case/records on our initial visit and recommended laminectomy with a possible shunting of the cyst, meaning placing a shunt was a possibility. They say, “possible shunting” because even after having done an MRI prior to surgery, the final decision is made at the time of surgery. There is really no way of knowing what the doctor is dealing with until he opens – too graphic! Sorry! The date of surgery was on November 7, 2017 and here laminectomy was performed and a syrinx shunt was placed. The syrinx shunt diverts the fluid from the syrinx into another space where it can be absorbed. There’s a few locations where the fluid can be absorbed and this is what differentiates one shunt from another. The shunt I have is absorbed in the peritoneal space or abdomen. The space location is determined on the patients case and the surgeons personal preference.

I appreciate you coming this far in the post and following my journey. Those of you that can tolerate not so pleasant images, I share some pictures of my hospital stay following my most recent November 7, 2017 surgery for Syringomyelia.

Xo – Ana

 

 Pictures following my November 7, 2017 surgery for Syringomyelia