• Life

    Our days are numbered

    It has been a challenge to write anything these days.

    My disease is progressing quickly with age. In the last year or two, I started to notice a quick deterioration in my stamina and health overall. 
    Since October I have been hospitalized for an infection and then most recently, mass found in my uterus that caused a tiresome hemorrhage (I lost a couple of pints of blood and needed a transfusion) which is unrelated to EB. The squamous cell carcinoma is coming more quickly and becoming more systematic. Chemo is not a recommended option for Epidermolysis Bullosa for a multitude of reasons.

    My left arm has aggressive cancer that has reached the muscle, if not, deeper, I was told by my doctor recently. There is the small talk of radiation as a last resort as I am running out of options to keep my limbs, and now, my life. With how poorly I feel most days, I have wondered if cancer has already sneakily made its way inside my body. 

    It’s been difficult at times to open up about what is happening with me because I almost feel bad to keep telling others how “bad” things have been for me. The look of helplessness and awkwardness of silence from the other end is difficult, and I never want to make anyone feel overwhelmed, yet it is my tribulation I have to face every morning. At the same time, I don’t want anyone to feel sorry for me, just being there with words of encouragement, again, not fake/false hope. Be real. I grow tired of the facade as I grow older. I’ve been living my life quite well. What brings me sorrow, is if anything happens to me, I want those I care about to be OK. That is something I am working on to trust God will care for those who need help. 

    I definitely cry almost every day when I have my alone time with Jesus and my pets. While my physical becomes burdened and weakened, my spirit rests in God. He withholds every teardrop ever shed, that’s so incredibly pure and beautiful to me. Not one human would ever care to do that for anyone. I have learned to set-free a lot of unnecessary emotion that is not part of my identity, God already established the person He wants and wanted me to be. People often can’t fathom how I can trust a being I haven’t seen or met, but His presence has been shown countless times throughout. I don’t trust myself or mankind itself to guide me as well as He has. 

    Whatever the future brings forth, I hope I can leave a lasting example of unconditional love through God’s teaching, not of my own thoughts and selfishness of the self.

    Love one another. Take care of yourself and others without a coat or a hug or both. 

  • Life


    *Disclaimer: This post is purely from a good place from my heart and is in no shape or form bashing purposes of education or getting a job. Finishing my degree was very much so important to me as a young adult, but my health interrupted my studies and mental focus greatly. While I never finished my degree, I have had a multitude of opportunities in the past along the lines of my dream job, leaving positive impressions as well as helping me gain immense confidence and knowledge. I’m simply conveying wherever you are in life doesn’t mean it’s not good enough. Maybe it’s not the “social norm” or you are beating yourself because of challenges or struggles that you are not at fault for, try to let go of that. I want people to be reminded of whatever path you are called to or have chosen: you’ve got this.

    When you are born in a body that can greatly challenge or limit you from achieving goals and dreams in life, sometimes one can feel inadequate in the world. Those faced with physical disabilities may have heard the question, “Well, if you haven’t completed college nor work, how do you function as a human?” or “What do you do in life?” I understand the validity of these questions but having a degree or working does not define anyone’s existence—whether you are stay-at-home, working, getting a degree or not, at any given moment one can feel inadequate in this world. Achieving such things in life are additions to one’s life which can positively impact your future. Sometimes ignorance paints a rather skewed perception for people. “Aren’t you bored?” or “How could you be tired for having a non-eventful day?” (Yes, I’ve heard these questions or similar, and believe me, most of my days are VERY eventful.) Some of these questions are often from a good yet ignorant place. There have been some individuals that blatantly voice their opinions stating it must be less likely for someone with physical challenges of some kind to have an impact on society.

    Those facing physical and/or mental challenges can be an anything in this world — you do not need a degree or to be a certain age to pass on something impactful to others. With the era we live in now, we have a multitude of ways of positively impacting the world. Sharing an idea or your story or someone else’s story passes on from that person to the next; it’s essentially a domino effect. We don’t think that sharing or our response to a stranger can affect someone around the world in another continent. I don’t mean virtually, either, just by your existence and communication with one person. I pray whatever seeds have been planted, they can grow according to how God wanted.

    It’s like being the outwardly odd, slightly unhealthy tree that society wants to cut down, but you beat all the odds because beneath the surface you have the longest, thickest, toughest, pulsing roots. Branching out and connecting with hundreds of other roots, nurturing and providing to others, far far away. Even while the most beautiful well-structured trees on the outside look like they have it all together, sometimes they end up falling the hardest because of undernourished weak roots. Whether you feel it or not, we strengthen one another to keep this world going. Whatever you are; whatever you are not; and whatever you want to pursue, you are needed and valued.

  • Life

    Keep in the Light

    I learned something recently: Don’t let anyone dim your light. Not even you. For me, my light is from God above. I’ve been dim for the last couple of years. I allowed myself to keep dwelling in stagnation of self-loathe. Aside from me listening to lies about myself, there were also people trying to bring me down with them. Sometimes people just want to dim your light for their own comfort or need someone in their misery with them, don’t allow it. Doesn’t mean you don’t stretch your hand forth to help others on the ground. Just remember to keep that light going. We grow in light, not in darkness. Keep shining.

    Written by: Monsie Young
    A Facebook memory

    This was a Facebook memory I wrote a couple of years ago that I actually was appreciative of the reminder. Sometimes I am surprised by my own thoughts that can be very helpful during the questionable ups and downs throughout life. I am thankful to know my existence is not to please only myself or anyone or everyone. The existence of others is a bonus to life but not a part of my being. I am responsible for my own actions, responses, and character, to hopefully be a light to a very dark world. Remember the light is constantly being pulled in by this darkness, but when you recharge your light, the dark cannot exist—the blobs start to drift further from you, eventually fleeing far away. As long as you keep charging your heart and spirit with the best sources which lead to life. Whatever you keep feeding into your brain and heart on the daily (audibly, visibly, etc.) is what comes out through you and onto others.

  • Life


    As we become more technologically advanced, the more we become engaged in various video games, social media platforms, newsfeeds, blogs, streaming websites, etc.

    In the short amount of time of 30 years, we have jumped leaps and bounds of eye opening technologies to fulfill our needs immediately. While there are countless positive benefits to such uses, it is, however, causing us to become more impatient; increasingly disconnected with decreasing valuable connection with others. Communication has been increasingly more challenging for many including myself. I have witnessed people getting noticeably angered by the lack of “likes” on posts or when we send texts messages, we just use emojis to convey our emotions (excluding lighthearted chats, more on a serious manner). Granted, we may not be thinking shallowly but at times it can be monotone. We adapt and grow from one another’s actions and responses. The less we give each other, the enrichment of our relationships grow weaker, parched and bears no fruit to feast on.

    Scrolling through various social media’s “liking” through hundreds of posts each day seems harmless, but we are molding our self worth to feel value through validations of an upvote or views. I, too, am guilty of falling for such attention from the internet.

    Showing friends and family love should be more than a public post on Facebook or Instagram. While it gives you the ease and convenience to share with a multitude of others, it has become the dominant way of expressing gratitude and value to life. Life is more precious than a post that will eventually fade into the deepest depths of the internet, soon to be forgotten. While I am not the biggest fan of talking on the phone in general, I much rather hear someone’s voice and receive a handwritten note. Despite my discomforts with more personable forms of communication, it is more fulfilling to the heart and spirit. No audience. A tender moment between me and that individual. There’s a warmth that the internet cannot convey richly. You just never know when you might hear that person’s voice ever again. There are frequented moments I wish to avoid people altogether for various personal reasons but I am gifted somehow each time I come across someone’s eye opening life lesson or story, or just the simple connection of a genuine smile or laughter. It is still out there.

    Internet, social media and the alike have obvious valuable strengths that can help, for example, raise awareness and bring more individuals together. We need to remember it’s an addition to broadening our communications, not solely the way of connecting. It’s just important to find that healthy balance (in all things)—just because someone’s life looks “happy” through social media and receives more attention, it does not equate your value or validation. Lets not make assumptions. We only know truly know a person’s life if we actually spend time with them.

  • Life

    2018 EB Awareness Week

    For EB Awareness Week (October 25-31) 2018 I would like to touch on one of many complications of Epidermolysis Bullosa which is skin cancer: Squamous Cell Carcinoma. I believe it should be spoken about more frequently, though, I can understand the heartache that comes with any type of cancer. *Photos will be linked below.

    Squamous Cell Carcinoma is a fairly common skin cancer seen in adults (without EB) due to years of sun damage and/or overuse of tanning beds. The nose, cheeks, ears, chest, upper lip, scalp, and hands are most commonly affected by this cancer. The cancer is usually treatable with little to no complications but can result in death if undiscovered and untreated. For those with Epidermolysis Bullosa, however, the cancer is not usually slow growing, especially in my experience. While skin checks are tiresome and an addition to the already load of doctor appointments, skin checks are essential to save your life. If something appears abnormal or isn’t healing, this should not be ignored thinking it’s “just EB”. Even if your doctor says they don’t believe it’s cancerous upon examination but something seems off, push for a biopsy. It has happened to me. It doesn’t mean you have a bad doctor, sometimes diagnosing ailments with EB can be challenging. SCC’s appearance can differ greatly in EB patients. SCC mixed with EB combination causes cancer to become a wildfire—it can become invasive quickly even metastasizing, unfortunately, resulting in death due to the very limited treatments (chemo usually is not an option or recommended). There are different medications that have been proven to help slow and kill cancerous cells for those with EB. I, myself, have not experienced these alternatives.

    SCC has been in and out of my life for more than half my life now. You can read more in-depth my first struggles with SCC, etc: right here. I had SCC removal of my right arm back in 2016 without much complication, though, I had questionable painful (even red and some swelling) built-up keratinous areas on my feet, hands, leg, and knee. These built-up areas were abnormally tender. Even after much soaking and moisturizing, these areas grew back in a couple days. Usually, wounds become abnormal with squamous cells but later in my adulthood I discovered it’s not just opened wounds that could be cancerous—even unopened areas can be cancerous. I also had a small wound on my left arm that started to develop that wouldn’t heal, at all. It became increasingly painful over time. The pain started radiating up my arm and neck, telling me it’s definitely bothering vital nerves. The wound started out as dime sized then opened up to half dollar size. Another indication was the wound’s appearance was similar to a “perfect” circle. The edges of the wound did not have any new skin growth over time. Usually, a “healthy” wound has uneven edges displaying activity of new growth over a few days.

    You’re probably wondering why I waited so long? I had been on the fence about the differences from my past tumors/skin cancer by its appearances. I also had been battling financial and legal burdens at the time. The hospital is 250 miles one way which is obviously challenging especially having to sit in a car after surgery. Unfortunately, there is limited support nearby for me especially catering to Epidermolysis Bullosa. Planning the surgery itself was tiresome because most of my past surgeries here in Utah have been done without putting me under.

    I had seven areas of removal. The areas were covered in INTEGRA to serve as some protection and jumpstart healing. Six of these areas were questionable spots over the past 2-3 years. Five of the seven were positive for squamous cell. Two were invasive and the rest were in situ (means stays within location found, not invading neighboring tissues).

    The very invasive one on my left arm was the most painful before removal. It still has cancerous cells meaning I will require another surgery soon. My lymph nodes under my armpit and left breast were increasingly tender and grew painful. With a dermatological disorder and constant bacterium, lymph nodes are usually enlarged in EB patients. Determining whether it is related to the skin’s normal breakdowns versus cancerous cells traveling throughout the lymphatic vessels into the nodes—comes biopsying the lymph nodes with a thin long needle. The doctor will do 3-6 passes into the lymph node under ultrasound, extracting cells to hand over to pathology.

    The mental: I honestly did not want to do this surgery for a multitude of reasons. No one ever wants to have surgery but there are moments you feel like it’s just too much. Waking from surgery you experience an immense feeling of gratitude each time. This surgery was my biggest challenge I had ever experienced in my lifetime. It took away my ability to walk without the use of a wheelchair full-time, hopefully temporarily. Doing physical exercises to stretch the tightness of scar tissue forming, to prevent these areas to heal “frozen” in place. Feeling the ripping and bleeding that comes with it causes nausea. The frustrating sleepless nights due to discomfort. On top of the usual EB pains, there were now seven surgical wounds causing an endlessly loud hum throughout my entire body. It feels like a sensory overload. Unable to walk or leave the bed often causes painful bedsores, new wounds amongst areas that were stable over the years. A few weeks go by, the infection starts to set in. Taking heaps of different antibiotics wrecks my body. There were days I slept 15 hours or days I felt a force pulling my body down to sleep. I just wanted to sleep and sleep (and for once, I’m actually not anemic.) There were a few moments I wasn’t doing well—not over exaggerating, there were a few close moments. I’m still battling these infections and will require further tests to try to (hopefully) get a handle on them. Infection is sneaky and can claim a life quickly. In the midst of balancing life, health and then your emotional and mental state to calm yourself that you may be living your last day. There are many different emotions and death can be looked as a freeing experience—that’s often our perspective when we aren’t living an illness or injury. When facing hard moments physically and mentally, you have to hold to what’s good and what’s pure and try to release those fears. It doesn’t mean it won’t be scary especially when it has been your daily. In these recovery moments, in your most vulnerable and lonely days, sometimes all you can do is cry. Crying does not mean you haven’t been strong. Jesus wept. I believe that emotional response was instilled in us for a reason—to release/reveal pains, to show empathy to those hurting and even in our happiest moments we can cry. I often run from crying but it’s something I am learning to embrace in my downtime. I wish I could have told my younger self, “Just cry sweet one.” Even though EB deteriorates my physicality, it cannot rob my heart and soul.

    Keep conquering. Hold dear to your loved ones. EB won’t be forever.


    *DISCLAIMER: Not for the faint. If you wish to view photos of the aftermath of removing Squamous Cell Carcinoma, enter the password: ebscc at the following link: SURGICAL WOUNDS.

  • Life

    Why I Hated Myself

    Seeing the #MeToo statuses are sadly no surprise to me, but it makes me feel not alone in the burdens I have carried: the feelings of shame. The reasons behind why I hated myself. The reasons that confident girl kind of disappeared. Sexual harassment/abuse is something we have endured since man walked the earth. It does not make it right. Not one human owns my body nor do I own theirs whether man or woman. In my belief, my body is a temple and there are parts of me that are and should remain sacred, or so I thought.

    It’s important to raise your children with awareness interacting with others as well keeping close tabs on their internet interactions. Nothing can be 100% full-proof but knowing everyone is on the page, being aware of the warning signs can save someone from years of mental, emotional, and physical turmoil.

    I’m trying to muster up sharing a couple of my stories here. There are too many harassment stories to tell and as long as I am alive, we will encounter with some kind of sexual harassment nearly every day. For me, personally, this is not about getting back at my abusers—it’s just fact. I’m not at all looking for pity or apologies from my audience. I want this to be public because my life story can be a lesson to our future or simply touching with someone who has been similar instances. One day, my disease will most likely be the reason for my end here on earth, but sometimes our death can be the start of a huge impact on others that could save a life.

    As a child, my mom was teaching me some lessons of responsibility by checking the mail independently. There was a neighbor across the street who seemed friendly and would often speak to my mother, in a neighborly fashion. On my daily mission to check the mail said neighbor was acting oddly and was talking me in an inappropriate way, trying to lure me over to his apartment. I ran. From that day, he would avoid talking to my mom at all costs. I remember seeing him at a gas station, he hid from us appearing uncomfortable by the look of me. If he didn’t have bad intentions, why the shame I thought and, somehow, I felt like I was invading him.

    I became friends with someone around the age of 12, someone that I thought enjoyed my company and my personality. He was a bit older than me so he was a teenager. When I grew older I tried excusing it to him being hormonal. Thing is, I did not want nor asked for these inappropriate actions. Anytime I tried hinting or sharing with anyone, “You allowed it. You knew right from wrong.” He exposed me to pornography. He exposed me to lewd acts. I didn’t want that. I wanted a friend. I wanted safety in a friendship. I was a child. I was numb and drained. It went onto until I was 18. I had been extremely excited to attend college after graduating high school. There were a couple of years I did not interact much with him because I was dealing with my cancer. I stupidly talked to my abuser online—it was nothing but sexual with him. Whatever I could do to fulfill him sexually, I did. He was attending the same college I wanted to attend. I told him I was gearing up to apply. He explained what areas of the campus he would take me and outright said, “I’m going to rape you.” I broke. I lost it. For the first time, I felt murder in my heart. I felt crushed. I never thought I wanted someone dead. The rage was more than I could endure. While I threatened to go to the authorities, I was frozen. My mind kept saying, “This is your fault. They’re not going to do anything.” I started abusing narcotics to numb my emotions. I wouldn’t sleep for a day or two at a time then sleep the day away, rinse and repeat.

    All of this is… incredibly difficult to post especially in the public eye. A bit before all that occurred with said “friend”. I was touched inappropriately, every morning from 5:30-6am by someone in a professional setting. A place where you are supposed to be safe and feel safe. For years it would play it repeatedly my mind, “Maybe I am overthinking this. Maybe they were supposed to do that.” Even to this day, extreme stress or grief can cause flashbacks to those moments.

    In my search for decency and healthy relationships, it allowed more unhealthy instances to cross my path. I thought it was how I was supposed to be treated by men. I was their puppet and they had to be pleased. Unhealthy sexual relations for years. Deep down I knew it was not how anyone should be treated. Anytime I was the “big sister” anyone, I would become overprotective and a bit neurotic whenever they were dealing with their own relations with guys. How I wish I could have taken my own advice sooner rather later. I have come to healing and relearning the importance that sexual harassment is NOT OK. Anywhere or anytime. Toxic relationships are NOT OK. You are worthy. We are worthy.

    My mom received a lot of pent-up attitude and rage from me as I was not one to express my emotions very well to her, at least when it came to the darkness and sadness. For this, I felt awful. I did not want my mother to feel like a failure. Parents, watch for signs. Talk with them. Hold their hand and say, “When you’re ready, I am here when you need me. No judgments.”

    I loathed anyone’s hands on me. I didn’t matter who you were. I did not hug my best friend, Sara, until the 10th year of our friendship. There was a time I loved being hugged then it turned into something I avoided. It made me feel claustrophobic and, on hard days, it still can be challenging.

    There has been much healing through prayer, therapy, and journaling. Some days are rough but I learned to hug those I trust. I love showing love and I don’t want my perpetrators to destroy the beautiful person God has built me to be. We are not obligated to share our stories, no one is. So if you are reading others stories and don’t wish to share yours or you feel bad for not sharing your story, stop right there. Do not. This is not a competition or a rule. You are just as valid. You are not unnoticed. For me, the healthy vulnerability sheds my shame. Shame is the root of my depressive meltdowns. It has been one of those things I believe we are taught not to share. Just shove it away and move on. Awareness is so important for change amongst our hearts—so we can treat one another with respect. Man or woman. Look at the heart. Next time you interact with someone, ask yourself, “Am I respecting this person?” or better yet “In what way am I not respecting this person?”

    To my perpetrators: You made me hate something that was meant to be beautiful: sex and my body, overall, just me. You made question my self-worth. You made me do things I did not want to do. No does, in fact, mean no. There is no such rule, “If a woman says no, it really means she wants you.” Hatred festered in my heart, but it did not win. You did not win. You will know and understand what you have robbed of me and others. Every evil thing we do will have consequences.

    But I’m not crazy, I’m just a little unwell
    I know right now you can’t tell
    But stay awhile and maybe then you’ll see
    A different side of me
    I’m not crazy, I’m just a little impaired
    I know right now you don’t care
    But soon enough you’re gonna think of me
    And how I used to be, me –Unwell by Matchbox Twenty


  • Life


    “Connection is why we’re here; it is what gives purpose and meaning to our lives. The power that connection holds in our lives was confirmed when the main concern about connection emerged as the fear of disconnection; the fear that something we have done or failed to do, something about who we are or where we come from, has made us unlovable and unworthy of connection.”
    ― Brené Brown, Daring Greatly: How the Courage to Be Vulnerable Transforms the Way We Live, Love, Parent, and Lead

    I am not sure if I will post this on my blog or not. I go in and out of being transparent and vulnerable to the internet nowadays. We can be so quick to judgment and misunderstanding with anything posted even if they are our own thoughts and feelings. Somehow you are shamed for showing emotions. It makes me question keeping this blog but there is a part of me that writes for therapeutic reasons, in hopes that another individual going through similar trials can benefit. Maybe it can help that one life to say, “They understand.”

    There has been a plethora of gains in my life and accomplishments I had never seen myself doing or participating in. I have felt so incredibly grateful and gifted with new relationships developed.

    Here’s to vulnerability and transparency…

    I have been dealing with an unknown feeling of unwellness for the past 3 or 4 years. Concidently, it all started with my esophageal strictures and these “feelings” increased over the last 2 years. The last several months has been a rollercoaster. I have been to a few doctors; in and out of the emergency room leading to extensive tests. It is most infuriating to hear comes back normal yet you cannot function on the daily. When you are already have limitations, not only due to your disease but situation and location, it can be isolating. I cannot and am too afraid to leave my house. There are days I have panic and anxiety attacks out of nowhere. I read, mediate, reflect on fulfilling verses. Embarrassing but sometimes I sit in a dark closet to calm my sensory/emotional overload. Fighting infection on my small wounds are becoming problematic more each day. Sometimes my thought process is foggy, forming simple sentences can be a challenge. Sunlight feel like a daggers throughout my nervous system once the light hits my eyes. 1500 mL of water does not keep my hydrated, my skin suffers from lackluster. My tongue feels like sandpaper if I utter a few words. My extremities constantly tingle. I feel fatigue and sleepiness after any activity even eating. Low grade fever every day. Migraines are every other day. My abdomen is tender and sore, hard to the touch at times. My blood sugar is all over the place yet I am not a diabetic. The constant urges to vomit but you cannot due to strictures and preventing the excuriating tearing of the esophagus which lead to bleeding. I can’t exercise like I used to and it makes me feel not-so-great about myself  

    Crying is nearly a daily occurrence for me. I remember there were years crying did not come with ease until my dear friends passed then the repeat, I did not cry for months. Now, it’s like if I don’t have my crying session each day, I feel like I cannot face anyone… not even my happy bundle of joy, my Lunabug.

    I have needed oral surgery as of 2013.

    There are pre-cancerous and cancerous spots that need attention.

    On top of that, my life is going through a full transition. A transition that has been a hard choice to come.

    I have only felt guilt and shame because I just… do. While many are so over the moon proud of me: why can’t I, for once, be proud of me?

    Feels like I have and am being completely stripped from inside out. In every loss, you can only hope there will be gain.

    I am known for not always really saying how I am truly am because my heart gravitates toward those less fortunate, but taking my own advice and the advice of others, pain is pain. 

    This was not easy, but here’s to healing (again…)

  • Life,  Traveling

    Yosemite Winter 2017

    Another trip to Yosemite with my bestie completed. Every year we are surprised by the differences each year. It just does not get old for me. Some years have been dormant and desolate, needing its thirst quenched. A season like this, the thirst is being quenched with purifying waters which should reveal the enrichment of life—whether new or old. It makes me reflect upon the transitions of life. There are moments in life where everything is beautiful, seemingly unflawed until the storm or fire rolls through, pruning the good and the bad. I view Yosemite quite like how I see life each day. There are so many mysteriously beautiful parts yet there are bruises from the battles of the elements much like life itself. It all depends on perspective and attitude on how you view things. I try to strive to find the beauty in everything.

    I can’t say enough how incredibly blessed I am to have a friend that has chosen me to travel with her. I am thankful for keeping dear to me selfless close friendships. Those are rare to find. They keep me smiling and laughing—to remember who I am truly am and strive to be.

     Life lately for all of us has been mind numbing, blinding… rough is putting it lightly. I am not going to get too personal publicly, but there have been instances in my life and others I never thought I would witness or experience. As cliché as it sounds, never say never. Any scenario in life is possible, but it is how you respond and learn from such trials and transitions. Grow from it. Don’t let pain or hate callous you. We have plenty of that swarming amongst us. 

    The sun shines not on us but in us.

    John Muir






    More photos here –>

  • Health,  Life,  Pets,  Traveling

    1800 Miles

    Beautiful San FranciscoThank you for loving concern, prayers, thoughts, etc. Today was a long day for everybody. My dilation was delayed due to unexpected surgeries that took priority over my procedure. I was under for 2 hours for a 30-45 minute procedure because my wonderful GIs went very at a slower pace. This was my first official “real” dilation in my entire life with EB. They were terrific. It was also my first time being intubated by an anesthesiologist, too. Everything was done with a wonderful tender hand. I feel like a new person. Back story: I had an attempt for dilation in Utah with the best GI doctor in the state, but he felt was not experienced enough in Epidermolysis Bullosa. Furthermore, he felt he would perforate my esophagus. While feeling hopelessness after his decision, I am very thankful he turned me away for future procedures. I’d rather be miserable awaiting that special person to help me than deal with irreversible consequences. His heart was in the right place.

    What I am about to say is not a cry for attention or pity: It has been a challenging 6 years, honestly. I have shed many tears. Had many counseling sessions. There were many scary moments within my own head. I know a multitude of us have gone through numerous events in life. Things we never thought we’d go through or live through. Little by little, my social life has been shorten just trying to survive. Thankfully, I have friends’ that have chosen to stick close even when I just wanted to hermit. I have not been the best daughter, friend, stranger, etc.

    I waited 3 years for a proper diagnosis from hospitals back at home to explain why my chest was giving me issues (since I had not experienced a very small stricture–I was stumped.) I was just given pills or diagnosed with anxiety. I had anxiety and some panic attacks, but I wanted to know why. I only received 3 hours of sleep per night. Food pooled in my upper chest. I felt an elephant on my chest constantly. I was “hangry” all the time. All the time. I suffered dehydration. My stomach grumbled every hour around the clock. Yes, it has sucked. On top of that, I have had dealt with personal battles from different directions. I would rather not delve into it publicly online just yet, or at all, but I am letting you know, you will preserver.

    Sometimes I only post happy shiny posts. Social media really allows us to filter our lives to “perfection”. People get this idea I have money, that I can travel whenever I want. Again, all blessings of dear people who have been beyond generous. My travels have been pleasure, but mostly medical as of late. As of now, I get $17.15 per month for my personal income. It takes me over a year just to save for small selfish purchase for myself. I am not complaining, just being raw. This is my reality. I sometimes forget, too. There’s no such thing as perfection. I simply wish to show positive more than negative; it’s what I hold dear to most often. We deal with a lot negative in our world today. Without some of those flaws, bumps, and cracks, we would not have a new stepping stone/hurdle to climb to a decent outcome and outlook on our strength. [Un]fortunately, discomfort is a necessity to get ahead and teach us something new–rebuild grow, renew. Without a climb, how do we build muscle? Speaking within self. Through such negative or discomforting moments, I usually refrain from spreading it, or become calloused by the discomforts of life. It causes a cycle of a hardened shell. I am not guiltless of this. It happens. I would much rather smile through it than be unhappy.

    Ali had fun on the beach!

    Stanford Hospital experiences, for the last 2 weeks, all around have been phenomenal. Every doctor, nurse, coordinator, social worker… truly a godsend. They kept telling me how blessed they felt coming across me as a patient, but I felt they were the angels. I saw their sacrifices, not just for their families but their “hospital family” as well. With with my depression and lack of self worth the last several years, I thanked God wondering how I deserved such personable loving people? The true medicine was the laughter we shared, however, just listening to each person’s story was an eye opener leavinng me inspired.

    I am going home with a full heart…

  • Life

    Long Handled Spoon

    Sometimes things in life are not always fluffy bunnies, rainbows, and butterflies. I try to thrive on writing about positive things in my life, but that would not be practical or relatable.

    There have been awakenings in my life that are becoming more prominent with age. I have held onto rather unhealthy relationships in my life, we all have or experience them. My life does not equate as a higher placement than anyone else does. However, I do believe I have issues being an enabler of people’s weaknesses’ especially when it comes to using a person for their benefit. Trust me, close friends’ have told me I need to stop “being so nice” over the years. I am learning a healthy boundary amongst certain people in our life is okay. Years ago, I felt as if I was letting a person down if I did not bend over backward for them, though, I was feeling major discomfort. In most instances, I felt as if my actions to please that person was from my heart and would suffer whatever discomfort I endured. Thing is, would that person do the same for me? The likelihood was null. That does not mean I expect something in return every time I do something from my heart for someone. You know the genuine difference when that person’s intention or need is authentic. However, if that relationship is a one-way street, that can be incredibly dangerous to all parties.

    There had been an uncomfortable and disappointing situation I was put in the middle of a few months ago. I was angry, hurt, disappointed, but of course, I was going to do anything for that person. It was revealed to me vividly in my heart, I need to speak up for myself, finally. One of the said parties ended the relationship between us because they were not getting what they needed. The old me would have blamed myself endlessly, trying to win the approval of that person back. I allowed myself to feel the emotions for a good solid 2 days before replying with a respectful letter, but strictly standing my ground, in love.

    This journey has been extremely painful to deal with because that person was dear to me, but I hope I can see I am capable of loving even when sometimes we must part ways, whether with a family member or friend. We won’t please everyone in this lifetime. There are times we have to feed them with a long handled spoon, spoken wisdom of my grandmother.