In the pit of my stomach

When they say you feel it with your gut, they really mean it. We have a a neurological axis between the brain and stomach, and boy have I become very familiar with it!

I’m nearing about a year battle with gastrointestinal disorders. From acid reflux and esophageal spasms, to gastroparesis and asthma flares from my relfux.

I’ve seen first hand how much your gut affects your quality of life. Now that I’m on a treatment that’s finally working I can finally think and even feel more clearly. It really makes you see how important our relationship is, to what we fuel our body with.

Not being able to eat can really make you feel not quite human. While I envy anyone who can just eat without thought, I bet everything I eat tastes way better to me because I gotta fight for each meal.

It also taught me a lot about trusting in my understanding of my body and advocating for myself medically. Sometimes Western medicine is ready to write you off before they give you time to heal.

Recently my asthma was greatly affected by my acid reflux which in turn, triggers acid reflux. But before I noticed the pattern the doctors were already saying it was just a “new symptom” of my disability. After being on a round of steroids and greatly improving I’m going to say that probably isn’t the case as it wouldn’t have helped then.

But think if I had just taken that and not pushed? I wouldn’t have gotten the steroids! I went into the pulmonary doctor I was referred to and said I think it’s just causing this horrible cycle and you know what?

He was floored that I figured it out! He said it would take more for even professionals to figure it out and explain it all so well. I don’t know if I should be irritated about that or proud but I’ll just take grateful and move forward.

However, I felt guilty when I postponed appointments due to Covid concerns or just needing the day to rest, not run to another pessimistic professional. Which I believe gave me time to better understand the cycle my body was going through and finally time to heal once I got a treatment from really being listened to.

I don’t know what the future holds with all of this but I’m just glad to be on the up swing and happy I’m feeling human enough to write. I’ve missed you all so much!

True reflection

We am experience it at one point or another, that feeling where your inner self just isn’t represented with what you are seeing in the mirror. However, for me 2020 has made this drastically worse. I find myself looking at person who I always feared.

Growing up with a disabled parent is hard. My father was diagnosed with muscular dystrophy in the 80’s and my parents decided to not have kids. Luckily for me, they argued about who’d get surgery to ensure this and I popped up unplanned.

While my father lost his ability to walk, I was learning to walk late due to surgeries to fix a birth defect called Club Foot. So, my physical experience has never been “typical” in this life. I’ve always been slower, weaker, and different.

I didn’t get the right doctor as an infant for my foot, it was unseen in my little rural area. So, I ended up having extra surgery than I should have needed. I remember clearly seeing my reflection in the glass of our entertainment center. The scar tissue in my ankle had re occurred and it was twisting my little ankle sideways. Meaning I was walking more on the side of my foot than the bottom. My mom said she saw it in my little wet footprints that summer, and knew it was time to find a better specialist. We did and though my young memory is full of traumatic medical procedures, the doctor fixed my ankle to the best of his abilities. Although limited somewhat due to the botched first surgery.

I remember waking up alone in a hospital room and seeing my little arm wrapped in gauze onto a splint with a hook. It was meant to keep my IV in and hooked onto the side of the bed. My little self though thought they’d taken my hand and now I would forever be like Captain Hook! I screamed and cried, traumatizing the sweet Hispanic lady who was cleaning my room.

Fast forward and I never ran well in school. I never got good marks in PE and remember teachers yelling in my face to try harder with sit ups. I’ve always just felt like I’m trying to work through a world of very heavy gravity. Everything just weighs more on me.

When I hit puberty I got curvy. Then I hurt my knee. We were too poor for MRIs and most doctor’s acted like I just needed to rest it and lose weight. I would and it just got worse. At one point I could move my kneecap around sideways with just a slight pressure. It was constantly dislocating by then and horribly painful.

In my late teens I couldn’t tell if my knee made stairs hard or if it was something else. No one told me I could get my dad’s disease, but I knew it. Little me prayed nightly that if God needed me to learn from struggle, please just don’t let it be my father’s disease. Anything but that. I watched him slowly get trapped in a body he couldn’t move, struggling to breathe or even scratch his nose. Until it killed him before I was 16.

In my early twenties I got pregnant with my daughter. It was extremely challenging with a knee that would dislocate when just standing up. My pregnancy was lonely and painful. My partner worked nights and slowly became a monster who had no empathy and unlimited cruelty. Thinking if I could just be “normal” I’d save my little family. I rushed into reconstructive knee surgery less than three months after having my daughter via emergency c-section, with painful complications after.

That year was one of the worst in my life. Living alone with an abusive partner while battling postpartum depression and trying to heal from a knee surgery that felt more like I’d been hit by semi. I didn’t have internet. I didn’t have cable TV. I wasnt allowed to have anyone over. And anything I did around the house or to rehab was just never enough in the eyes of my partner. I finally broke and told him I needed to be tested for my father’s disease, something just wasn’t right.

This was something I’d warned him of from the very beginning of our relationship. So, it wasn’t like I had kept this dark secret. I even fought the idea of being in a relationship in the beginning, telling him of the difficulties that ensue with loving someone so sick. I was given platitudes that it wouldn’t matter due to love but I guess you can’t know until you’re in it.

Fast forward and his abuse shifted towards our child and I was done. He convinced me I deserved all his physical and emotional abuse but I knew our child did not. I became a single mom weeks before being given a muscular dystrophy diagnosis. All before I turned 23.

The years have chipped at my physical form to now I’m full time in an electric wheelchair. My diagnosis is muscular dystrophy? The genetic testing said no, but the testing is a difficult process. Doctors can’t even figure me out.

It’s so hard to live in a world where you’re simultaneously judged by your physicality and yet told not to allow it become your identity.

How can it not define me when it shapes my entire world?

Or how do I show the world who I am when my physical form is so damn far from who I truly am inside?

When will my reflection be of who I really am?

T

The Root of Negative Mental Health Perceptions

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It is simply a part of being human. With the amazing gift of the human mind, comes the ups and downs of mental health. When dealing with general health it is widely accepted that we all deal with times of balance, often considered good health or wellness. As well as times of imbalance, being bad health, disease, or illness. Just as our bodies change, so do our minds. Perhaps, even more so, as we are still very naive as to inner workings of the brain, mind, and soul. With vastly varying beliefs, I doubt we’ll ever be able to come to an agreement on how the brain and mind are connected to the concept of soul. However, it boils down to the fact that everyone has challenging life events, overwhelming stress, or an illness that disrupts their inner balance. Just like a virus can disrupt the balance of your body. Or malignancy can disrupt the balance of your cells. For some it’s more impactful or intense than for others. Yet we do not judge someone if they struggle harder with cancer than someone else with the same form. But looking at mental illness there is such harsh judgement. People are looked at as “crazy” like it is somehow within their control, or they are just lacking the will and strength to overcome the challenge. Thankfully, we don’t do this to someone who is sick. Imagine have the flu and someone judging you for it.

For many, mental illness is more impactful than they will ever admit, because horrible stigmas cling to mental health and those who seek care during challenging times. For all of us, I’ll bet we all have gone through moments of mental illness or dis-ease. And how many suffered alone unnecessarily because of the connotations associated with mental health? Judgement follows watchful and weary of anyone admitting to mental illness. Preventing many from seeking help, or even truly realizing the need to seek the care they need. Which is horrible because for we all know that catching an illness or issue early can prevent it from lasting longer or getting worse. How many would have been able to return to balance with simple treatments, yet left neglected it spiraled into something much worse? But why is this? What has created such a stigma around mental health? In my humble opinion, it is fear.

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Mental health is the only aspect of health that is fused with the aspect of the core self, be it personality or just purely the soul. The ever powerful “I am”. While many physical illnesses or injuries can shake us to our core, there’s this resounding faith in inner strength that it “will pull you through it.” That you can fall back on your sense of self during illness or injury. Yet with mental health we have to take this cold hard look at how easily our idea of identity can be changed. It is a sobering thought to think that the aspects of “I am” can be shaken with simple changes in the chemistry of your brain. That the imbalance can cause someone who was happy to be miserable. Not caring for the people or things that once greatly defined them. It makes you question if your soul is merely a chemical interactions, but really this is letting fear run wild.

When we look at someone with mental illness it scares us. For who wants to really look inside and think that the normal inner dialogue inside your head, can suddenly switch to a deafening roar or dark twisted voices. That these changes can cause the person to seem a stranger to those to know them best. Acknowledge that it can change habits, inhibitions, and fortitude. While most will never experience the dramatic shifts in mental wellness, the fact that it is still largely unknown and even worse, misunderstood. Leaves it this looming pit of terrifying possibilities. Just like our ancestors gave into paranoia of demons and witches causing events they simply didn’t understand. So too are we basically giving into superstitions that mental illness is different from any other form of illness. It is much easier to look at someone with mental illness and place the blame on them, that they have somehow failed, are broken, or weak. Rather than looking at someone who is going through this horrible health challenge and showing them empathy. Because empathy requires you to take on that moment of “what if it was me”. It’s an aspect of our mortality that we have a hard time accepting, because we often tie our personality to our soul. Which I think does very little justice to how amaranthine the soul truly is. The soul doesn’t shatter over the experiences of a lifetime.

Mental illness doesn’t mean that the soul is weak, it’s just going through an experience. I feel that often we look at identity and sense of self in this concrete and stagnant way. Yet throughout our lives our identity has to change. It is just hardest when we have no feeling of control. But we only truly lose control when we allow fear to dictate our action, or in some cases inaction. If we could only take a breath and realize that mental health, as well as our concept of identity, works on a spectrum. As one of my favorite writers says:

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Just as we cannot step into the same river twice, never can we step into ourselves the same as another time in our life. Who would want to? Stagnant water isn’t inviting. In fact humanity chases the white water rapids. And sits in awe of the waterfall. The ever-changing, and sometimes chaotic, beauty that sits within nature dwells too within the human experience. Though some would say “Oh, what then should we seek mental illness?”, and the answer is, of course not. We are already learning to be weary of intentionally messing with the balance of nature, for it can cause far greater ramifications. But we don’t judge nature for the bends in a river. If only we could sit with this acceptance for each other, to practice setting aside our judgments and fears; the journey would be far easier to navigate. Yet, we tend to put so much pressure on ourselves to be in control at all times. With the main goal of simply feeling secure enough so that we may go out and test our limits in daring ways. The suffering we self-impose, and then project onto each other, is exhausting. Imagine what we’d be capable of if we tried to practice letting go of fear and judgement. To set aside shame and instead uphold the journey to seek wellness in all aspects of who and what we are. It won’t be easy, nor will it happen over night. But it begins with just trying.

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If you are either in a rough patch, or have been facing the challenges of long therm mental illness. Know that you are not a broken person. You are not unworthy. You are not weak. You are not a failure. You are just human… And you deserve (w)holistic wellness.

Know that for at least this one human, I do not judge you. I meet you where you are, with an open heart and an empathetic soul. I cheer for your accomplishments, and am open to listen to your heartaches. For we all have our challenges, and I go through this journey ever in awe at the diverse and complex beauty of the human spirit. It is #mentalhealthawarerness month. If you feel inclined to share, I’d love to know what experiences you’ve had or are going through!

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Realistic Positivity

fabian-moller-401625-unsplash.jpgIf you know me at all, or follow me on Instagram, you will know I am all about those positive vibes. Whether it is Law of Attraction (positivity attracts positivity). Or just down to the science of Psychology and what powerful effects positive thinking can have on your well-being. I am on board! I try to spread it everywhere and use it to get through the challenges of life and especially, the challenges of chronic illness. But I wanted to talk briefly about, realistic positivity. As it seems so often we’re bombarded with messages of “just be positive!” and there’s a point we all reach where that isn’t realistic.

I’ve had chronic pain for a while, but over the last few months it has gotten a lot worse. With horrible flare-ups that just hurt to my core. While I continue to battle for a proper diagnosis, I still am trying to get the pain under control. Due to my holistic wellness training and desire to heal my body rather than band-aid the issues. I have had a lot of issues with finding solutions. Even being adamant about not wanting narcotics, western medicine treats chronic pain with extreme suspicion. Which I understand for the addiction issues, but for a patient who doesn’t want to go down that road at all, it is still an extremely frustrating and often dehumanizing experience. For the past few months I felt like a ping pong ball being batted back and forth between doctors. Yet even clearly stating I do not want narcotics, I was verbally spat on. I kept at it and finally I was referred to a specialist. It would take months to get an appointment, but I was so hopeful this would offer me some solutions for my pain. My primary even ran scans and tests ahead of time so that I would be set for this appointment.

I’ve been driving myself for weeks to just get to that appointment, to use the pain, and have it drive me. Thinking I’d finally have options and potential answers. I got there almost an hour early, only to be rushed through intake. To find out they never even looked at my scans/tests, and had to only see the Physicians Assistant. Who would shush me every time I tried to speak. He was robotic and barely even looked at me. I felt like I wasn’t even aloud to speak, let alone hurt. I don’t feel like I was heard and I wasn’t given any viable options from the visit. It was a waste of time and it left me crushed. Then today I had a flare-up, which hit me hard. And you know what? I let it. I got the kiddo off to school, I looked at my schedule and set aside the none-essential things. Which gave me a couple free hours today. And I let the sadness, frustration, and pain wash over me. I gave myself permission to cry, be upset, feel sorry for myself, wallow. Just gave myself permission to feel. I let all those emotions that I don’t want to dwell on, pass through me. Because if I keep going like they’re not real, I will burn out. They’re a part of life. And I so often see people who believe in the power of positivity, carry this guilt of having a bad day. Yet, we’re only human and no one can realistically be positive 100% of the time. Even if you can, I think it is a disservice to your experience in this existence. Because it is part of life and it is essential to allow all things to balance out in life. But the key is to allow yourself time to let it pass through you, and not dwell inside you. It is just a moment in time and it will pass. It is just energy and it will pass.

I could go into more depth about all the specialists I’ve seen and how they treat me like I’m subhuman. How much having a disability requires me to constantly advocate, not only for myself but others as well. Just never-ending avocation and work to get through all the barriers that happen in just “normal” existence. But that is seriously enough for an epic book. One you gotta let me know would want to read. As I don’t want to just rattle on with stories.

My main point is, if you’re going through some stuff. Be kind to yourself. Give yourself permission to take a break from trying to be “on top of it all”. Learn to tell the difference between allowing negativity to take up residence in your life, and just allowing experiences to flow through you without attachments. Because life is really all about energy. There’s good and bad. While we try to maintain the positive, negative energy has to be around for balance. Most importantly with all this, please, learn if you need to take out time to retreat inward during a bout of treacherous energy. Or if you need to reach out. It can be isolating and I am so grateful for the support system I have. Don’t let it isolate you if you need someone (I’m here if you wanna talk!).

We just need to learn to not attach self-worth to the current flow of energy. So, we’re capable of navigating through it.

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