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NOTHANDO AND ADENS STORY : Autism Awareness

 

 

 Please introduce yourself :

 

My name is Nothando Laurel Sibanda. I am a mother of 2 beautiful boys (Aden 7 and Loyiso I currently work and live in Johannesburg, South Africa.

 

When did you notice your son’s developmental delays?

 

Aden, my firstborn, is autistic. Before he turned two, I realized that he exhibited some unique behaviors and developmental delays in comparison to his peer group. I assumed it was because he is an only child at home, and so I decided to take him to crèche (daycare/kindergarten) early so he can socialize and acclimate with other children in his age group.

However, as a first first-time mother, I was dependent on Google for every and any slightest thing. As he progressed with his delays my Google searches and mother’s intuition led me to Autism. This was essentially due to his regression. At eight months, he could imitate saying “MAMA,” but at two years old, he no longer was able to do so or attempt to mutter words.

Between his second and third birthday, additional symptoms of autistic behaviors developed and became more prominent. He would flap his hands, spin in circles, headbang, and hyper fixation to puzzles. By the time he officially turned three he was still non-verbal. I knew it was time for us to see a specialist. Our first evaluation was by a neurologist.

 

What did you know about Autism? Did you feel you were well equipped with the information that you needed and provided?

 

I only had a general idea of what autism was in theory. However, it wasn’t until his developmental delays did I start to understand and learn the semantics of his behaviors. Prior to his official diagnosis, my primary focus was on the remission of his symptoms. I was essentially looking and pouring all my energy into finding help for my son. In retrospect, I spent a lot of time searching and chasing for a cure instead of researching HOW to be a mother to an Autistic child. 

I had seen parents with Autistic children, and I had prayed and hoped never to walk that path. However, deep down as they say a mother’s intuition is always right I knew Aden was autistic. I was not equipped, I was a first-time mother, I was not prepared for his diagnosis and I was just NOT READY for a reality I already suspected.

There is so much that goes on after a diagnosis, financially, emotionally, physically, and psychologically. It never ends. I am still learning, And I am not afraid to say I am still not fully equipped, BUT for my son and family, I take it ONE DAY AT A TIME with a positive outlook.

 

What do you want people to know about autism and spectrums?

 

I know it’s cliché and ignorant to assume that when you have seen one person with Autism we assume we have seen the entirety of the spectrum. However we know or should know that Autism has no look; therefore, it is important to be empathetic and patient with everyone you meet in general. We live with many undiagnosed individuals who, some as children were deemed weird, geeky, slow, or dull because of lack of awareness. 

 

What is your son’s superpower?

 

Aden is a genuinely loving and caring soul. I have realized that he can sense energies and does not like being around places that he feels are negative. He is also incredibly observant, especially in technical areas. 

 

Did his diagnosis have an emotional toll on your mental health? Does it still do?

 

You can imagine the difficulties of having a child that you have no idea how his future will turn out in all aspects of life. I had already planned on how I wanted to raise my son, the conversations I couldn’t wait to have with him, I had planned on the schools that he was going to attend, the extracurricular activities he would partake in. All those dreams were essentially “canceled”, and I had to reimagine a different life one that I had to adjust to.

 

I went through all stages of grief. I cannot translate how I felt or how I still feel into words. In as much as I do not want to change my son, I also do not enjoy seeing him experience the difficulties of living with Autism. I am always anxious about how he will cope should I depart this world; I worry about the lack of acceptance in our community. I just worry every day about whether he is ok if he has a headache or not, how he’d communicate with me should something be wrong, whether I’d understand if he was trying to alert me that something in him is not ok. 

I have accepted everything about him; every day is just a new day with the hope of improving mainly his communication skills. Sometimes he shows that he is struggling to get a message across, and he starts sobbing.  Now that wrecks me emotionally

 

Did having a diagnosis give you any relief, or it made you even more fearful? 

 

I cannot call it a relief, but it gave me something to work with. I had to put my supermom gloves on to get to work and face the challenge. I did not have a problem accepting the diagnosis. Intuitively I already knew deep down and for me, it was game on. 

 

The fears came after realizing that as my son continues to get older and cognitively develops, the traits and symptoms develop as well. At one point, his autism was mild and then transitioned to severe. That is where the fears associated with child abuse, homicide, and abduction amplifies. I have to provide full-time care for him, as he cannot communicate anything that may be a danger to him without me being aware of it. 

 

What obstacles did you face, if any, in him receiving treatment during Covid? 

 

The pandemic has changed all our lives and I made sure that he experienced what we all endured. There was a total shutdown therefore, his therapy sessions had to be canceled. Such is life. Virtual sessions require eye contact, and he is not comfortable with that. I did not put him in any bubble to shield him from all this. He had to learn the new world his way, and trust me; he uses sanitizer more than anyone in this house and always makes sure that he always has his mask.  

 

Did you face any cultural stigma after his diagnosis?

 

Oh yes! If it is not people thinking that it’s witchcraft, then it is some indirectly assuming that it may be due to the sins of his parents or grandparents. I have to educate and advocate for Aden and teach them about Autism, but then again, “normal” humans have the privilege to decide if they want to learn from you or be stuck in their thoughts and ways.

 

What do you feel would have made a difference in your journey at the beginning vs. now?

 

After the diagnosis, I feel like I overwhelmed him with therapy sessions. I remember he used to see four different faces every week, each with another task for him. At that time, I would go anywhere I was referred to due to my lack of knowledge about the condition. Then I had to pause and reassess, realized how this was affecting me financially, plus I was spending my lunch breaks at therapy rooms which also took a toll on my own physical wellbeing. I then decided on shortening therapy sessions and realized that they must be reasonably paced treatment plans to minimize sensory overload.

 

After much deliberation, I decided to equip myself with knowledge on being an Autism superhero mom. I spend more time with him therefore, I have to understand him more than anybody else. I have to teach him the pragmatics that would be of use to him in the society and world we live in.

If I had a broad understanding of what Autism is/ was before it affected me directly, I would have handled things differently.

 

How do you take care of yourself so that you can take care of your family?

 

I used to take breaks by traveling whenever I got an opportunity before Loyiso was born. Currently, I just take 2 hours a fortnight (two weeks) to go for a Mani and Pedi. Trust me, it’s a short time, but I recharge a little. 

 

Any advice you would give your younger and older self?

 

To my younger self, embracing diversity is important in life, but it has become a prerequisite for optimal growth and living. 

To my older self, know what you can and cannot control. For everything that you cannot control, never let it break you but take it to the Lord and always pray for a positive reaction. 

 

Any resources you would like to share with mothers who may be struggling or need additional information?

 

The research on Autism is still developing, and I’d like all parents to partake in research works that are developing. In as much as we accept the condition, we need our children to live optimal lives. I would never wish any parent or child to go through what we go through, and if a cause can be identified, at least the increasing number of children affected by Autism will decrease. Bear in mind that 41% of people with Autism are non-verbal. That calls out for more awareness and acceptance, but above all, resources are needed to aid extensive research. 

I am still struggling as well, so this is a message to myself also – As mothers/parents/caregivers, it is crucial to seek therapy and take care of our mental wellbeing. We need help; we need someone who can listen to us without judging us, we need someone who will understand that we were not blessed with children with Autism because we can handle it. It is difficult. 

 

Please share the proudest memory/moment you have shared with your son or overall family 

 

Aden makes us proud in so many ways.  A new word from him or an addition to a phrase to us is like Christmas! Every time he tries a new food, I feel like writing about it on my status update! It is those little things that are taken for granted that fill me up with joy and gratitude. We celebrate every little step he takes.

 

What would you like your son to know about you as he gets older? 

 

I don’t know how many times I tell him that I love him in a day. I’m just hoping I show it enough. As he gets older, I want him to understand that he is my son and that I so dearly love him. He is my source of joy. I will forever live my life to care for and for his best needs.

 

What are you the proudest about yourself?

 

I have raised a happy boy for over seven years now despite all these challenges that I have faced. That on its own accord gives me the greatest sense of pride. I’d say this adventure has made me realize the unconditional love I exude, the power in believing in God, and I can say that I am also proud of myself because I have learned to allow myself to break down but never stay down. I am my source of comfort and strength, and I have done so well in making sure that I create an environment that my son is comfortable in. 

 

 

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Faith and Therapy ? Faith vs Therapy… Why PICK one when you can have both … Let that sink in …

The other day I was uploading stuff to the “cloud,” I came across a picture of Boomer and me on a run that Bryan took when I was training for my first 10k. I had decided that I would pick distance running, and with a German Sheperd who needs that level of exercise to be less obnoxious, it was a win situation for the both of us.

I didn’t anticipate the emotional feelings that the image brought up ” today a year ago” versus today a year later. The differences are so drastic that I felt like someone was cracking at my heart. Today, my body can hardly make it to the bathroom without feeling like I just ran 100 miles. So I did the most logical thing a person would do when I ate a whole chocolate bar and took a nap. 

We have been dealing with a lot in regards to my health. My heart struggles to keep up with my other systems, or my other systems are so out of wack that they are stressing my heart out. We are going to be spending the entire month of February conducting some medical tests. I have been told to give it time for your body to heal itself or get to a baseline, so we can figure out what’s wrong. Having a Dr.s appointment almost every day in a month does not feel like we are giving my body a chance to heal. It feels like let’s take this already jacked up body and put it through more stuff so we can get some results or explanation.

Also, how do you bed rest when you have to go to these appointments? Make it make sense, Lord. 

After my nap and chocolate treat, I realized something my body last year was able to run multiple 5k’s, The Baltimore 10 miler, and a Half Marathon ( BOOM ). Even there was a stress fracture on my knee in between its OK. I have a frequent flyer mile card at my orthopedic Dr’s office. In my defense, though, it’s usually a different bone or muscle that requires attention.

Reflection and gratitude are the exercises that my Therapist and priest have suggested; understanding and naming, AND Identifying emotions as they come up is necessary. For me, the combination of church, faith, and Therapist has been beneficial. There are limitations in the humanness of my Therapist. But God, through faith and his mercy, there is always an answer and no limits. Also, it makes confession a lot easier I have mental bullet points for the priest. So this is what I have so far.

  1. Last year my body was able to do amazing things based on the goals I set for myself, and I have the medals to prove it. 
  2. I listened to my body and emotional state that it was time to take a break. Survival mode can only get you so far. 
  3. I had a wedding during a pandemic, and I am not sorry for it. A part of me knew this might be our only and last chance.
  4. I finally understood the significance of crying. You don’t cry only when your hurt or in physical pain. Crying can be a way of emotionally releasing garbage that has been lingering in your body, mind, and soul.
  5. Stop showing up for people who do not show up for you. There is no need for drama. Walk away and let go. 
  6. Intent matters 
  7. God knows all and is all. There is always a reason for the things we go through and trust the process. * may the process hurt a little less lawd, just throwing it out there. If some of the saints are listening, feel free to intercede this on my behalf.

These are the reflections that popped in my head as I wrote this. There are plenty more. Reflecting on some of these things helped me start some healing emotionally and spiritually ( still waiting on the physical) I needed. I am learning to be kinder but with boundaries * In the wise words of Amanda Seales, ” I will not tolerate F*** S*** from nobody who is not beneficial in my growth process MMMMKay *. I am consciously making an effort to be grateful for the things and people I have in my life and for those who chose not to be in my life. Thank you for leaving twas nice knowing ya!  

Also, taking the time to slow down has given me time to learn new things like building a website, writing letters, and just being a regular older and wiser version of myself. Even with this Lemon of a body, I’m still pretty dope, sarcastic and funny at the end of the day. SO no, this whole out with the old in with the new does not apply here or to me. What applies here is your old-self was flawed, and your new-self is flawed as well. Whether you haven’t realized it yet and when you do, I hope it’s as magical as it’s been for me.

I like to end my blogs with some wisdom or wise words ! So in the wise words of MUSHU in Mulan the original

“Yeah, this ain’t going to be pretty. But don’t you worry okay, okay? Things will work out. We started this thing together, and thats how we’ll finish it. I promise

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Accept, Let Go, it’s COVFEFE

LET IT BE LOVE , LET IT BE UGLY, LET IT BE BEAUTIFUL , LET IT GO

It’s been 26 days since we crawled into the “New Year.” Personally, I do not know if I am still in 2020 or 2021. I was intubated during that transition. So it’s one of those COVFEFE moment’s “nobody really knows what it means. The past few weeks have been hard for many the world is still trying to figure out how to survive a pandemic, racism, bigotry, and all-around turmoil. 

As many of you know, I have an immune system that does not seem to want to be on the same page as me or the same planet. I have not been able to write or publish much outside of Instagram because after spending a few days in ICU. I was/am ANGRY. I was angry that my body was failing me. I was angry I only got to see only my husband for 5hrs a day. I was angry that I still had to be patient and advocate for my health. I was angry that it seemed NO ONE CARED! 

After being discharged, I carried that anger with me home. Like many people, PTSD has rewired my brain to “check out/disassociate” whenever I feel overwhelmed. I also activate my internal survival mode. When I got home between New Years Intubation and last week’s stay ICU, I would look on the right side of my bed, and I could see the crash cart and incubator. I asked them to move it as they were triggers, but based on my condition, they could not. Many of us have seen the crash cart in many medical shows House, Grey’s anatomy, you name it, except this was not a soap opera. This was my reality. They kept it there because it would be accessible when “needed.”

I was angry that my hospital room was not covered in flowers and balloons. I was angry that my phone was not blowing up from text messages. I expressed this frustration to someone close, and they reminded me that :

  1. People have their own lives to live and prioritize what is important to them.
  2. Just because you go far and beyond for people does not mean they will do for you. 
  3. This is the nature of the chronic illness. Everyone is there initially but not for the long haul (a cancer patient in my advocacy group told me this.
  4. All I had for those days where the 5hrs scoot came to visit, and that should have been enough. BUT we are humans. We crave validation that we are loved.

So when we got home, I turned off survival mode, and I check all the way into ALL of my emotions, and I CRIED not like that cute tears falling down my face. I mean that Kim K ugly cry. I mean, my body ached from what it physically had gone through my mind reacted/responded accordingly. I cried till my chest hurt. I felt my heartbreak. I mourned my old self. I grieved my old self for days. My husband held me during these moments. When I was crying quietly in bed, my dog snuggled up next to me and started slow breathing. My therapist has been trying to get me to do breathing exercises, and here my dog was lying next to be slow breathing, inhaling and exhaling. I followed her breathing pattern, and I noticed that I was calming down with each inhales and exhales every breath I inhaled and took every ache and emotion held it, and exhaled it. I started my journey to LETTING GO. 

I went through my phone, and I just deleted, blocked, erased things that no longer served a purpose on my journey. Sometimes we hold onto things because there is a sense of obligation or familiarity with it. Holding onto things that serve no purpose is energy tainting your soul. It creates resentment. I do not want to be a resentful person; I do not want only to be needed when convenient. I do not want sympathy or validation. I am ENOUGH as I am, and I’d rather feed my soul with purpose and walk in God’s path with life.

Has anyone ever heard of release crying? Welp, I just learned about it this month. Most people would describe me as one of the strongest people they know, and for the longest time, I wore it as my armor, but I took it off these past few days, and boy or boy, has it been a rollercoaster. A rollercoaster of emotions I did not even know existed. It has been exhausting but liberating. I have leaned on the people who have shown up for me because I for sure cannot stand on my own two feet * no, seriously, my body is so swollen it cannot hold my own weight* I do not have the reserves the energy to hold this “strong” wall up or the toxic positivity. LIFE really honestly sucks right now, and that’s okay. It might suck tomorrow too, but somewhere in between, it will suck a little less, and those are the moments your want to hold on to. Those are moments that ground you. 

Losing someone close to our family reminded me of the fragility of life. As someone who is always so close to death, I have either become numb or desensitized to the finality of it all. This journey has taught me how to cry. Not that surface cry but that soul releasing cry that comes from your baby toe through your entire system and out of your body. This is what release crying is, and I am here for it. A lot is still going on, but I thought I would share my experience with acceptance, letting go, and crying as a release. 

WE MOVE !

LGC

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Relationships and Chronic Illness oh how art complex

LIVE FROM YOU LOCAL ICU UNIT

Photo by Tobias Bju00f8rkli on Pexels.com

When you have done good, and another has benefited, why do you still look, as fools, do for a third thing besides -credit for good works, or a return?- MARCUS AURELIUS

Surgery was supposed to breeze recovery was supposed to be slow and steady, and then the allergic reaction happened. That episode and that day brought me to my knees. My faith in my care team was shaken. Under medical supervision, I started detoxing and tapering some of the medication that I was on for so long. Some were harder than others, and some were a breeze. The second week was when I started to feel the signs of withdrawal, I am not an emotional person, but I would cry at the drop of a hat.

Then I woke up one night screaming in pain. My knees were hot and swollen. We figured this was part of the detox process. We were advised this was not normal and told to head to the hospital when we called the cardiologist and PCP. We/ I was there ALONE 6 hrs only for them to realize that the drug which was safe for me was not available at that hospital Scoot had to sit in the car and listen to everything through speaker phone as I wailed in pain . They offered us a choice to go to a city hospital that is one of our Covid Hubs and or wait to get a scheduled . Self discharged and went home to wait the 5 days at a different hospital . By morning. I had lost the ability to walk because my legs, hand, and knees were swollen .We no choice we headed back to the same hospital thinking because they were aware of this situation they would help us with much fuss since these were potential signs of a blood clot or poor circulation from my heart condition .

All 31 years of my life, I have never been treated in this manner. I understand that we are in a pandemic, and we have to follow the guidelines to keep each other safe. I am a high-risk cardiology /immunocompromised person. But being left in a room for over an hour with no blanket, oxygen, or a monitor to check my vitals is borderline malpractice. I remember getting out of the bed, falling on those same swollen knees, and crawling to open the door to that leads to the nurse/doctor station. The perks of being chronically ill and advocating for myself, You have a general idea of how your care plan needs to be handled. I know because I am a complex patient with chronic pain and a MAST Cell Syndrome, which makes treating me with certain medications is rather difficult.

But when I open the door, door if the triage room and I unleashed advocacy hell I wanted everyone’s names working that shift and the number to the hospital’s advocacy team. The Dr. tried to yell something from across the room about cardiology, and I snapped back, what would you know about my cardiology history if I am not hooked up to any monitor. I could have had a heart attack in there, and you would not even know if you cannot help me. I would be delighted to call 911 and get a transfer to another facility. I was angry. I was shaken, traumatized even as a patient advocate I have my lows and this was my low , and advocating for myself while in pain was difficult . The doctors tried to scramble but it was to help me but it was too lat We again decided on self-discharge. If something were going to happen, then I would rather be home.

The next morning my body had doubled in size and turned purple, a sign either I was losing circulation to my extremities or had a clot somewhere. We decided to try our luck at our scheduled hospital and From the time we checked in to the timer through the Er . The ICU staff had be already simultaneously settled a bed in ICCU for me , it took less that 35 mins from Er to the Critical Unit. Unfortunately I had to go through this process alone because COVID voided my husband or family to be there with me . I was in critical hypertensive crisis BP 190 /111 I stopped talking , my vision temporary vanished and I had one of the worst head aches of my life worse than a my migraine . The nurses didn’t want to scare me but essentially I was having a mini heart attack in my sleep. A crash cart has was brought out with the intubation machine and I said anything else except the tube. I begged not to be intubated if you know me, I do not beg.I promised GOD I would stop eating chipotle or being sarcastic, I would make it to confession more than once a month anything that would keep me from being intubated . I begged for my husband, for my mom , my dad my friend some I knew to walk In that room but no one one came be in the room for Me. The doctor was throwing words around like stent or pace maker.

Well okay then 😰

I understand I am an adult, and I should be able to make these decisions independently, but when you are the patient, in pain, and trying to be an advocate for yourself, things get messed up I am only human . I am not even sure what I signed last night. All I know are two things stood out for me I crawled out of the room to save/fight for my life, and I begging for a 4th intubation my emotional and mental state would not bro able to handle that .

Life is tough, and life can definitely kick you down the hill when things are bad, but I never thought I would in this dark moment. I never thought I would look around and find ” no one” to lean on in my friends . I had more check-ins from my co-workers than friends I’ve known for over 10-12 years. I had nurses who checked in on me more than some family members. My priest drove 45 mins the opposite direction to pray over my husband and me. I learned a lesson at the end of the day, everyone moves on with their lives, and it is okay.

I have always naively believed when you shout up consistently for someone they do the same for you. So I held a strangers hand through a procedure and cried hysterically into her scrubs m .

I talked To my older siblings and the did not pull any punches your Life is your’s it is what you you make it and no one will show up for any better than yourself. Live your own life, be selfish, don’t support those who don’t support your life or your dream be your own cheerleader, and when it gets tough, crawl to that door advocate for yourself to save YOUR OWN LIFE!

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This too shall pass ! I need to SURVIVE but how many epi pens do I need😰

“I need you to survive. I need you, and you need me were all a part of God’s body stand with me. It is his will that every need is supplied. You are important to me. I need you to survive. I pray for you. You pray for me. I love you. I need you to SURVIVE.” – Hezekiah Walker

My intentions of the way I was going to walk into 2021 did not go as planned. I spent NYE and New Years Day in Critical Care in the hospital. That is the nature of having a CHRONIC ILLNESS. There is no concrete plan that will work for sure. I was supposed to be in some iridescent dress with my love and our closest friends. The “plan” was to take the morning to rest since Infusion the day before tends to knock me out. However, my face started to swell after breakfast, and my throat started to close up. This reaction is so familiar MCAS . This is epi-pen and time to head to the ER. Ironically one of the nurses who was there the last time this happened was there, and she recognized me as one of the most complex cases she has seen. She had never seen some go into anaphylactic shock and had a seizure at the same time. “hi Hayley,”

The last time I was intubated in July, my care plan we created a new care plan. I started infusion therapy to reduce how fast my mast cells are activated to avoid anaphylactic intubations plus the two epi-pen system inject wait 15 mins and another dose. Down side I also have some cardiological issues, which means my blood pressure can drop during anaphylactic reaction. or my heart rate spikes way to fast with the artificial adrenaline , meaning I have a higher chance of going into cardiac arrest. The Dr. was agitated because the nurses were not moving fast enough, and we watched my oxygen levels drop and I started to feel cold and euphoric . He had to ” borrow our extra epi-pen so he could intubate before things got any worse. So here I was being intubated on a ventilator 3 weeks post-op for a neck and shoulder decompression surgery.

They asked Bryan to leave the room so he could not see the procedure. I just waved goodbye. If you know me, you know how comfortable I am with death. I am not afraid if it is my time. I have written my gratitude letters and had variations of goodbye conversations with friends I’m sure some wouldn’t even realize it till later .I intentionally did this Just in case I no longer want to keep fighting, or my body can no longer handle the fight. I am okay if It is my time to meet the Lord. I did the best I could with the cards he dealt me. Some people think this is morbid, but I am tired of living in the body that hates me. That has given me so much loss, grief, and at times made my life isolating.

I don’t know how many times I have said Goodbye internally to the people I love every time I have been put under for surgery or intubation. This is the reality and the fragility of my life or anyone’s life. We never know when my Mast cells will react and how fast I am going to get care. I have become that friend who has to ask “what’s on the menu before I agree to be there”. Food is become something I worry about I’ve been on a cornflakes and ginger tea for a month because so far these are “safe” foods. Chronically illnesses never come as one diagnosis they came with multiple plus ones. So here I am healing from an intubated Then you add the physical pain of CRPS and FND. How much can one physically human take? I am fighting with my body to survive. I am fighting to stay alive , I’m fighting for my sanity in this medical mess and have some normalcy of a life ,BUT this is not normal; this is NOT FAIR. I do not DESERVE this, and I don’t believe that this is my FAULT. This is the body and the journey that God decided this was my fate, and only he can answer those for me, oh and trust me Its the top of my list to ask him when we meet because 🙄🤪

I was angry today at the world, to be quite frank. I have been on steroids, and for me, they give me the two-week bloat possibly pregnant looking belly, and I loathe it. 1) because based on my body’s ups and downs, we have been advised that trying for a family with a body that is in distress would not be easy. 2) there are days I can barely take care of myself, and bringing someone into the world who is completely dependent on me would not be fair. Another thing I have to put off / that is hindering my dream to be a mother . These are things that spin in my head all the time and have to pray for the strength of resilience and come out the the other side with grace.

So I was /and overwhelmed today, and I complained to my husband cried and shared how dark things felt today. I didn’t / don’t have the reserves in my faith and positivity tank today . So he sat next to me with 5 Ice packs in different places and we cried together. I cried for myself , for having him go through this with me and for us as husband and I wife . This might be because tomorrow ( when you’re reading this it’s already 01/04 this is our actual wedding anniversary where we walked into a courthouse and got married by a guy in ninja turtle pajamas and bed head. I’m writing this, and the irony is my body is so swollen my wedding bands don’t fit. I’m in post-op pain, but I can’t take anything until my immune system does not decide to reject the opioid medication. My anti-inflammatory medication interacts with the steroids. So I’m in survival mode, Every little breath is painful a reminder of a new trauma. I rock back and forth I can’t do this anymore.

I sat with this disdain and self-pity for half, the day pray I decided to pray but I could NOT, so I opted to listen to my Gospel Playlist, and the song I need you to survive by Hezekiah Walker came on as the second song that came on, and then it clicked. It is okay that I have bad days, and today I am just surviving. I do not have a plan for tomorrow; I just need to make it today and let it be his will. The 4th song was This too shall pass by Yolanda Adams, and as I write this, it’s 1:05. It is our Wedding and Diagnosis Anniversary. We know not to put all of our faith in humans because we all are faulty and not perfect, but today Scoot, you are the reason I am surviving today, and that’s all I can do. This is marriage sometimes I can’t show up with my 💯 to your 💯 but you carry me for both of us . We are not perfect but no one on this earth can say we haven’t been to hell and back together . Now I’m going to play our song Mamela by Micasa. The video and song are the epitome of us and our struggle.

Keep us Lord ❤️

Our Story In Song – MiCasa Mamela

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Be Grateful, Be Blessed

It’s a few days after Christmas. Honestly, I spent the day in bed served tea by my darling husband because I was in pain and nauseous. So I kind of hung out between the couch and the bed. I think that was enough exercise for me, considering I haven’t worked out till October, and it is going to be absolutely horrible getting back into running form. 

Anyway, Christmas was a little different this year with the pandemic and all, so I didn’t have to buy anyone gifts to show how much I appreciate them being in my life, so I chose to write letters (digital) letters at least because USPS has been BASURA for the past few weeks. 

I sat down with my ginger tea, the lion king soundtrack by Matt Bloyd, and tedddyswims. This is my writing ambiance, my vibe. So in simpler terms, I’m in bed drinking tea and thinking about gratitude. I started this blog impulsively at my therapist’s advice because I had written her a wrongly worded email about a session with my neuro dr. * for context’s sake, I was angry. Suprinsgly she was proud of how I could communicate what I was saying but write it down. This is foreign for me because I had never known to be a communicator, and when I finally communicated, I would be in a nonsensical rage. 

GRATITUDE is one of the lessons I have picked up on this new journey. It’s something I definitely either have never paid attention to or taken advantage of. When I started writing my letters to friends and family, I flashbacks of the little things these people have been involved in or contributed to this path that I have been on. In no way am I claiming that I have become this enlightened person, but I am learning to be a kinder, grounded, and grateful human. I am doing this for myself first and foremost to establish better relationships with people around me. 

So far, gratitude seems to be the easiest on my list because with growth and maturity, acknowledging your mistakes or contributing to a misunderstanding is a lot easier. Saying I am sorry I hurt you and I am grateful for you being in my life regardless of that is powerful. I read an article on gratuity in psychology today that states that more grateful people are inclined to be happier and less likely to be in emotional pain.https://www.psychologytoday.com/us/basics/gratitude And sometimes your lack of being able to be grateful can bite you in the ass, and the other person has every right to walk away from that situation. 

Just because I am on this path does not excuse me from being accountable for what I have said and done in my past. Every day is a chance to be grateful for something. The breath of life is one that popped up first. Just being grateful to have the gift of life is beautiful. Yes, it may suck if you are chronically ill, heartbroken, or plagued with the traumas of your past. Having people who love you regardless of being at your lowest, broke or jobless, is grateful for. Yes, I know it’s hard to see all these things when you are knee-deep in the worst of moments of your life. I might be reaching here, but please let me know or hear me out. I think there is a correlation between gratuity/gratitude with grace. Gratitude is the “reward” we show to each other as humans. Grace is the unmeasurable gratuity that God shows us. 

As much as I want to show gratuity to my friends and family. I also want to practice gratuity to God, who has power and domain over everything we do. He is the one who blesses us when we align ourselves with his word and his teachings. So as I practice to be more gracious in my actions and gratuity to my family and friends. I pray God has his will in leading and guiding me on this path. Because without him and his mercy, we are nothing. I am nothing. 

*St Michael defend us in battle. Be our protection against the wickedness and sare of the devil. May God rebuke him, we humbly pray. 

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Hello Grief. How long will you be here?

I have wanted to write about grief for a while now about the effects it has on us. But I kept avoiding the topic because grief can be unpredictable, and for someone with complex PTSD, it could be triggering. Especially around the holidays. So I am writing this with my husband on the other side of the couch and my giant german shepherd keeping my feet warm, reminding me to stay grounded. And I feel like it’s time to talk about it.  

So what is Grief? Grief is this unmeasurable sense of loss, sorrow, and sadness. It transcends culture, religion, race, or even human beings. Animals experience grief as much as we do. 

Personally, I believe Grief exists on a spectrum. WHY? We all grieve differently for different things because, as humans, it is not a one size fits all. We grieve for the death of a loved one, a pet, a broken heart, or ourselves. I have had three pivotal moments of grief that have been impactful in my life. 

My father passed away when I was 16 in high school. I was living in the US at the time, and he had been diagnosed, battled, and passed away from cancer in less than 7 months of my relocation to the United States. Media in their depiction of immigrants does not fully understand or do a deep dive the difficulties immigrants face daily, illegal or legal. We had spent money to have my brother, and I moved here, so we could not legally or financially afford to fly back home to bury our father. This was the reality of a 16-year-old girl acclimating to a new world, a new culture. I was a lost teenager in a different world, and I lost my father, the most important man in my life, all in under a year. Something in me broke, and I have never been the same. 

Psychologists always preach that children should not become involved or be aware of adult issues, impacting their development. When they did that research study, they should have included immigrant children, where we do not have the luxury NOT TO BE AWARE. Death was my first introduction to grief and sorrow, but I learned the power of resilience and strength.

My Second experience with grief was broken heart. I loved a boy more than I loved myself for many years for almost 7 years. We grew up together experienced many firsts together. At some point in growing up, our paths started to divert into different directions. I like to think of myself as the bigger person solely on the fact that I packed up my stuff and moved to another state in a week. I’m sure he would disagree with our story if you asked him. My dear friend grief wrapped me in his arms of sorrow for my broken heart, and I wallowed; this reiterates my position on how and why grief I think is on a spectrum. Unlike the death of my father, which I had no control over. In this relationship, I consciously choose to be in and out of it for so many years. I chose to stay when I shouldn’t have. He chose to stay when he shouldn’t have. So grieving the finality of this relationship was soul-crushing. I took that grief, and I partied my ASS off. We all grieve differently. But I noticed a theme in my sorrow. Another friend showed up resilience and strength. Eventually, I had to confront this grief as best as possible as a young 20 something year old. I soldiered on.

My third and current grief is who I was as a healthy person 3-4 years ago. When I received my health condition diagnosis, I was elated okay, so what’s the cure? Well, there is no cure. There is just management. OOOOF, okay, resilience and strength kicked into overdrive. We can do this! We managed for a few months till my body responded with a big fat NO! I fought so hard not to accept this new reality, and when I did, I had to let this old version of me go. She could not exist or survive, and I had to let her go. Grieving for yourself is different. Why? Because one your not dead, two, it is not two different people parting ways in a romantic relationship. It’s saying, hey old self who could kickbox; run miles go to work and be social, go to sleep, wake up and do that again was gone. So I grieved for myself, and when I was ready, I called resilience and strength to help a girl out. We are still not done grieving, but we are trying to make it less all-consuming.

Grief, sorrow, heartache fades over time. I do not believe in the concept of “healing ” These emotions. I believe they exist somewhere in our energy, and sometimes they resurface, and you have to process them all over again. 

But never forget that in the thick of your sorrow or grief. Resilence, strength, and faith will get you through. 

So here’s to grieving our old selves but knowing we will come out stronger on the other side

LGC

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A Diagnosis ok Thanks Now WHAT ?

“Life just got a little Harder”

The doctor has come back into the hospital room or his office. He is clutching a folder of all the tests run on you. For me, it had been close to 2 years since the poking and probing had begun. The first thing he said was your brain scan came back normal some activity indicates you probably have migraines. The second thing is all your blood work came back in the normal ranges, but we will continue to do monthly blood draws to rule out Lymes disease. However, Mrs. Conroy, we did a nerve test on you, and the GOOD thing is you do not have MS, but you have a condition called Functional Neurological Disorder, and it seems yours manifests with uncontrollable movements of your body, especially and in your case is the reason why sometimes you are unable to walk or control your body tremors. 

FND/FMD I have both versions (lucky me) is like if MS and Parkinsons had a baby. Part Neurologic and Part Psychological there are very few doctors in the world who specialize in FND, and they tend to fall under Neuro- Psychiatrist. An MD who is both a neurologist and a Psychiatrist (2 for 1 Special ). And now for the bad news, there is no specific treatment for FND patients because different symptoms, mine are my gait, dissociation, tremors, neuropathic pain, and pain induced seizures. 

I think leaving the Dr. office was the happiest we had been for a very long time. What was happening to my body had a name and, although confusing, had an explanation. We had a dual treatment plan we had to manage the neuropathic pain, what FND in my case tells my brain OMG we are in so much pain, we are injured send help over and over again specifically to areas that I actually had a physical injury at some point in my life. So my reality is that I’m in some level of pain from the moment I wake up to the time I go to bed. I’m having a great day when my pain is around a 6 because my ears are not ringing, and my tremors/twitches are under control. 

They say it makes it easier to understand and accept when you name something, but honestly, I don’t think FND understands itself. Even with a name and a clinical diagnosis, many doctors have no clue what to do when you are wheeled into the ER with multiple seizures. No one tells you that having FND, just like any chronic illness, is that treatment can sometimes be worse than the actual disease. I’ve been intubated, had a crash cart brought out because I was going into cardiac arrest. I have lost feeling in my legs during a work meeting and dropped to my knees in public. Also, it doesn’t help when you have another chronic disease that makes you potentially allergic to almost anything at any time, MCAS. We will save that one for another day.

It is not easy living in a body that hates you in a world that doesn’t even understand what you have. I had an ICU Dr. google FND because she could not understand why my vitals and test results were either all over the place or did not match the physical symptoms. 

So yes, I have names for my illnesses. Yes, I have had every test medically possible. I’ have tried yoga, and if anyone suggests meditation one more time, I might karate chop them. 

Yes, there is a sense of relief in receiving a diagnosis but not one that barely has any research or treatment plan. Everything for almost 4 years has been trial and error to see what works for my body.

I’ve been poked, probed, surgically dissected all in the name of managing a disease that is still a medical mystery. 

LGC

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My Beginning

When diagnosed with a chronic illness after you’ve been fairly healthy all your life is soul-shattering. Knowing that your life will never be the same 🧡

Some people are born chronically ill and grow up with a certain knowledge of their ailments. This however is not the case for others including myself. I would like to believe that I was born healthy and then somewhere along the winding road of life the fates were like ahh crap we forgot something. The irony is I have a tattoo that says “ do not forget to enjoy the journey of life from the beginning till the end”

When I first started getting sick we were running around different Dr’s who gave us different diagnoses and treatments some of which caused allergic reactions. Other doctors didn’t even believe my symptoms suggesting “have you tried yoga”. The lowest point was when my gait was so bad I needed assistance walking or when I had a seizure and hit my head so hard I had a minor concussion and wore a helmet for 2 months. Losing the ability to walk on my own was tough but when I started to losing control of my bladder was my lowest point, It was devastating to ask my husband to help clean me up in that manner. Another moment etched in my head was there was a medication meant to reduce seizure also reduced my ability to “think fast” . Losing the ability to control my body was one thing but losing the ability to communicate and form sentences was heart breaking. To me it meant I could not verbally be part of a regular conversation,I lost my talent of being sarcastic. I was a child again and needed to relearn words.

Finally, we got lucky and were referred to one of the best Neurologists on the east coast. When I called he didn’t have an opening for 6 months. I’m a believer in Devine intervention and someone last minute canceled their appointment and an opening for the next day was available. * This same situation happened when my mother in law called a world renowned immunologist. When we called there were no appointments but when she called some one had cancelled that very day and I got it *

Anyway my mom and husband drove to see the Nuerology specialist and while we waited in his office I had a seizure that lasted over 30 minutes, and eventually they dialed 911. I had just been discharged from that very same hospital the night before and here I was again . While we waited the Nuerologist called my husband the and said she has a Functional Neurological Disorder and started to explain that my brain sends the wrong signals to my body that we are in pain and eventually gets overloaded and shuts down hence the seizures. This is also the case for my allergy disorder my body creates way to many white blood cells as of to fight of some kind of infection or an allergy.

Again I don’t know if I’m lucky or my friends and family are prayer warriors but there is only one Neuro-Psychiatrist who specifically specializes in my condition and our nuerologist called on our behalf to explain the situation. When she got my case she had us come in for an evaluation the following week. I don’t think I’ve ever had an appointment that was 3hrs long but she looked at every single testing , imaging etc I had over the year and a half and she confirmed my diagnoses of FND and a movement disorder. My symptoms at this point were unbearable. Physically, I was exhausted. Emotionally , I was drained . The only 3 beings that were keeping me alive at this point where my husband, my mother in law and my mom . I had no fight left in me BUT a year and a half later 13 hospital visits 2 ICU stays and 1 intubation we had an “answer”

FND with a movement disorder with multiple areas with “clonus- a type of neurological condition that creates involuntary muscle contractions. This results in uncontrollable, rhythmic, shaking movements. And since I always have to win my FND came with neuropathic pain specifically in areas I’ve had a previous injury ( we will cover this gem if I write about CRPS . Since FND and the direction I was going mentally and physically I needed to go to a speciality clinic that has an FND department it was either Mayo Clinic or The Hospital In Louisville. As a family, we decided to go to the Mayo Clinic in Rochester for a full workup since they were able to get me in ASAP * also our priest called the Nuerology Department on our behalf to advocate for us and wrote a letter of recommendation * talk about divinity . So we got me stabilized enough to fly and I had to go alone because everyone had to work and the closest relative was my sister in law in Chicago.

I spent 10 days at the Mayo Clinic in Rochester. We rented an airbnb that was walking distance to the hospital because I did not want to be inpatient just me in a hospital room alone. Again I believe that this is/was Gods plan. The Mayo Clinic is founded and operates under Catholic guidelines. There was a chapel that held mass on my floor and around the corner from my Airbnb there is St. John the evangelist co-cathedral which was open any time of day or night. All these coincidences were occurring during my religious classes as I was in the process of converting to Catholicism. So when I talk about coincidences, I really am talking about divine intervention.

I know and understand my privilege in being able to get to MN to be seen by top nuerologist, orthopedic dr’s, physical therapists and more who were assigned as my care team. I am also aware how blessed I am for all the sacrifices my family made to get me to Rochester. I also know only a few people are able to get an answer in under 2 years.

Eventually, I came back home and we started working on my treatment plan. Naturally things got worse at first for a while adjusting to the new medication and all the 1000 things we had do .

I slowly started to retreat into my bubble and I completely isolated myself from the world. I felt like a burden to everyone around me. I felt guilty for all the Get Well Soon messages because I wasn’t getting well . Also, It doesn’t help that extremely sensitive to medication, food, or even air sometimes and that can set my MCAS/CIU * (allergy conditions)off at any moment and things can go from bad to being intubated.

In the beginning, I had so much support so many phone calls and flower deliveries they all wanted me to get well soon. I wanted to get well soon and I was frustrated as to why ? I was doing everything I was told to do. Until my therapist (Cognitive behavioral Therapist) started helping me understand what Chronic meant there is no cure for any of my conditions there is remission and management. Until you begin letting the old version of yourself go and learning to adjust to Your New Normal. The battle is going to be harder and longer than it needs to be.

I still grieve for my old self, it’s only natural as human beings. But I’m also adjusting to the new me. And this version of myself is kinder, more forgiving. Grief is a very complicated it comes in waves some bigger than others. To anyone reading this whose going through a medical,mental or general hardship. Just take it 1 minute or moment at a time.

LGC

The Chronicles of Body Image

Bawdy Goals ? What are those ?!

Please leave my body alone!

The idea of the perfect body plagues us every day with social media and fad diets about getting abs in 10 days.People who have abs congrats to you for your achievement but staying on your diet to achieve said abs me neva shem no sorry* I have been active all my life, and at some point In my adult life considered myself an athlete. I was running miles to help me detox from a lot of anxiety medications. I was swimming to drown the noise of the world underwater. I was kickboxing to release whatever pent-up aggression I was working on with my therapist. We do not realize the full impact body image has on our mental health until we do not have a choice but to deal with it and accept it. I also had to learn and realize that my 30-year-old body does not have the metabolism of my 15-year old self, which could survive at McDonald’s every day. My body was changing to accommodate the illness and the healing it needs for me to keep fighting.

When my health started to decline in early 2018, I was on a tic tac diet of prednisone. If anyone knows anything about prednisone, it activates the beast of eternal hunger in the process of saving your life. I was one of those people who would wake up in the middle of the night and make a whole steak dinner. When I was on high doses of the steroid, I still worked out but still managed to gain 20 pounds in 2 months, so 141lb to about 161lb. This was very alarming to me, but boy, was it drastic and dramatic to people that knew me as this active person and assumed I had ” let myself go,” but I was in a battle for my life and with a medication that I could not win. I think I could still gain weight on steroids even if I ate a celery a day. Prednisone or most steroids are supposed to help your immune system reduce internal inflammation, but the most DEMONIC common side effect is weight gain and the moon’s face. The side effects for me at the same time were destroying my self-image, confidence, and just my soul. Clothes did not fit right I had to size up to numbers I thought I would only expect when or if I got pregnant. This was daily internal dialogue in my head. Omg, I am gaining weight, and I did everything I can not make it as evident yes, I tried a detox tea.

Internally and mentally, you are watching your body change, so are the people around you and providing their unsolicited advice about how you need to eat less, you need to work out more, and omg, I didn’t think I would ever see you without a neck. All these comments sit with you and based on your state of mind, and some people opt to starve themselves, over workout, or be like me and start wearing my husband’s shirts to hide my body. Not only was I hiding my physical body, but I was hiding how bad my physical illness had become. I let people assume I was overeating or whatever narrative they created in their heads.

I was furious at the way I looked. How could my body possibly betray me after so many years? And to make matters worse, I had a wedding dress to fit in and somehow manifest this feeling of being the most beautiful girl in the room. * side note here why do wedding dresses not come in the regular sizing? Who made up the rule that they fit tiny, and then they tell you it’s a size ten? WTF Nah, dog, it’s not because I came in wearing a size ten dress from taj’e .

Anyway, finally I was in remission, HALLEJUAH ! and slowly started to feel like myself off prednisone, and the water weight was the first to fall off. The compliments began to flood in about how much weight I was losing, and all the hard work I was putting in the gym and pool was paying off. What “people” did not realize food tasted like metal when I tried to eat, so I ate as little as possible to avoid that nasty aftertaste that left me nauseous. So it was a lot easier to lose the 20 lbs I had gained, but I started to lose more weight than intended.

I did outrageous things like signing up for long-distance runs that I completed even with an injured knee with encouragement from friends. As my wedding got closer, my seamstress was the first to worry that it looked like I was losing more weight at a faster pass than she could keep up with every fitting. Finally, she gave me an ultimatum eat chipotle for a week, or I would not fit my dress. She would not have time to alter it. I kid you not, and we had to fill me in with sponges so no one would notice that the dress was too big and it was falling off or look unshapely. This was one of the sickest I had been, but I still powered through. I mean, I planned a wedding during a pandemic and lost 30lbs. I could do anything. I remember waking up before anyone else and went to the emergency room for pain medication and hydration. All because I needed or wanted to have the best time of my life with the man I love and the little friends and family who were willing to risk their lives for us. The only person who knew was was my husband, and he never drank that night because he wanted to make sure that I was going to make it through the night with no episodes

Three months later …….

I do not recall ever being this sick. I believe I’m closer to 180 lbs because I have 2.5 liquid IV fluids in me every single day for 6 hours! ALL because some of my organs were/are shutting down and struggling. I joke that if I move fast enough, I think you can hear waves of water inside my body. It used to bug me a lot when people would make comments about my weight ohhhhhh, you are so skinny, ohhhh geez you are so fat. I could honestly give a rat’s ASS ! this penguin-shaped moon face having body keeps and fighting for me to stay alive. SO I DO NOT CARE ABOUT YOUR OPINIONS!

Body changes are a major depressive component in a lot of chronically ill individuals. We mourn the people we were mentally, but we also mourn the person we were physically. Maybe one day I will “go back ” to my preferred weight or size but till then, screw it and anyone who has issues or ideas of what a person’s body looks like as it goes through sickness, pregnancy, weight loss, and weight gain. I will be rocking this penguin body and moon face till my body is ready for us to do something about it( prednisone makes you look round and chubby; I have a husband who kisses these chubby cheeks and tells me I am the love of his life)

Next week, when I shuffle into cardiac rehab, I am not walking in to lose weight; I am walking in to exercise my heart and build endurance so I can stay alive as long as God will’s it.

Be kind and mind your business about another person’s weight.

Kindly,

LGC

Be kind, Be light <3