The purpose of this blog is really just a way for me to document and share my journey with myself and… whoever you are?! 🤷🏼‍♀️

Around this time a year ago I was two months post-partum from having my son Odin, and had a few weeks left on maternity leave before returning to my Hairdressing career. It was at the same time decided it was time to call the doctor.

I found myself continuing to complain all the time to my friends about how “I’m so weak” and “this just CAN’T be normal after having a baby?!” But truly the straw that broke the camel’s back was the day I could not put my fork to my mouth. You never forget a day like that… standing in the kitchen with your spouse like “dude look! I can’t get my fork to my mouth!!!”, realizing something is TERRIBLY wrong.

As I dive into piecing my story together from what felt like the “best worst year ever”, my intention is to also process anything and everything as the Lord should lay it on my heart.

Side note, I didn’t change this picture because it’s actually sorta calming and freeing much like the story I’m about to tell.

The Instagram link below is a profile my husband started for me which also brought this blog and the name together. I think it’s so sweet even though he picked the weirdest pictures to post! 😂 His description of me made my heart melt that that’s what he thinks of me! 🤍🤍

Can I be honest? Life has been weird since the start of Covid and no this isn’t a Covid post I promise. I’m not sure if Covid is even relevant to my story but I feel like a lot of us can say that it changed our course… our “normal.”

I had Covid in November 2020 right around Thanksgiving when I was 7 months pregnant with Odin. Now at that time it was still pretty new and everyone around me was really scared for me and O but for me it was infuriating to be missing holiday hair money… the BEST time to be a hairdresser! I remember bawling at the thought of missing two weeks of work not at actually having Covid. Thanksgiving is a time to gather and I was quarantined. The worst part was that my Sister Stef was in town from Florida and I had just gone to breakfast with my mom and her. Thankfully no one I was around ended up getting it.

Stef was in town to let us know her and her husband were separating. This impacted my emotions more than I thought it would and not just because my hormones were raging! 😂 I remember thinking my Brother-in-Law would never meet our Son and how sad that was. Justin had been in my life for 15 years as the older Brother I never had. I can’t say we were “close” but close enough to feel a sting. Justin and Stef at this time we’re Pastors of one of the fastest growing churches in America and now this… a Divorce. What on earth?!?! How did this happen?!? The oddest part was that she was completely fine and so was he. This part may seem squirrelly for now but I’ll get there…

Fast forward a month I’m back in the swing of things but omg so tired… was this covid or pregnancy?!?! So many of us have similar stories after having Covid wondering if any of it is related. Over the next couple months this tired turned into fatigue. The kind where my husband had to help me put my leggings on and clip my bra because I just didn’t seem to have the strength in my arms and not to mention the massive load I was carrying around. Again I choose to brush this off to just being pregnant. The days all got longer and worse but I managed to keep my poop together all but one week of work before maternity leave. Little did I know just how “tired” I’d become.

What even is anxiety? Is it just me not being able to control my thoughts? But that can’t be, I’m always “in control”. The more control I try to have the more out of control life seems to get- why is that?! My brain starts to spiral down the “Rabbit Hole of Hell” as I like to call it. I know that some of you can relate and we all learn to deal with it in our own ways or methods but wouldn’t it be nice to learn to control it? It that a thing?? 🤷🏼‍♀️

For me anxiety is feeling tense, nervous and unable to relax (let alone sleep), having a heavy sense of dread, and fixating on the absolute worst. I feel like other people can see I’m anxious and are most definitely looking at me through a magnifying glass judging my every move.

If you can relate, I challenge you to look at all these feelings and say to yourself over and over, “these are FEELINGS not FACTS. FEELINGS NOT FACTS!!!” Facts are things that are KNOWN or PROVEN to be TRUE. I try to prove to myself that things in the Rabbit Hole are indeed happening outside the Rabbit Hole but WHY?!?!

All this to say the brain is a dangerous place and in some cases we simply can’t navigate alone anymore but are too ashamed to vocalize; maybe there is a sense of guilt? Maybe it’s that feeling of burdening those around us or that if we do share suddenly we’re “broken” or can’t “perform” well anymore. So we keep quiet which then turns right back into… you guessed it, anxiety. This indeed can be a lonely, dark place.

It can happen in a split second to any one of us. Any control you thought you had just vanishes and the mind takes over. Something similar happened to my sister Stef. Maybe her source wasn’t anxiety or maybe it was “circumstantial anxiety”. I don’t know, but for whatever reasons she had, she just could not “deal” anymore.

I’ve struggled to know how to begin this blog for over a week. THIS IS HARD. To most these are words on a screen but to me this is reliving the worst text I believe I’ve ever received. As I write this my eyes can’t help but fill up with tears as I remember that evening.

“Your sister tried to commit suicide tonight.” As I read those dreadful words I fell to my knees with the most heartache I’ve ever felt. Cody rushed Odin (only 2 months old at the time) to the nursery and I sobbed and sobbed until my eyes had no tears left. He said he has never heard or seen someone cry that way.

Stef spent a few days in a state facility as she was a “flight risk” for attempting again. Mom flew down there to be in charge of her care because at that time there was no one else to trust. There were, and still are, so many unanswered questions running through my mind that may never be answered. WHY did no one call her family with their worries? Why did no one HELP HER?! How could she do this to her boys?!?! Were the “signs” there?!?! Truthfully the Stef we knew died the day she pulled the trigger. It’s a miracle that she is still here with us.

Stef spent the next 50 days at one of the most sought out facilities in Florida and I think this was the first time in her whole life she decided it was time to tell the truth. I think of all the things my sister has gone through in her life and for the first time I felt empathy for the mind that convinces us that we are worthless, we are a terrible Wife and Mother. Maybe it’s even the closest people in our lives that mentally abuse us by telling us that no one will miss you if you leave or your kids are better without you. Sounds harsh right? The tongue is a sword and we all need to learn how to use it.

Now I’m not saying that the blame should be on anyone other than the one who decides to take their own life. It’s a sole decision of the heart and mind that isn’t always sound. I have a lot of opinions, feelings and questions about suicide and the force that drives it more then ever in our generation and sadly our children’s generation.

At the end of the day I think about how I can do better with my sword, better with my actions and simply love God and love people.

You see we grew up in the 90’s church AND were homeschooled- DOUBLE WHAMMY! That being said I do not blame my parents for anything and in fact I do have fond memories of the Church and homeschool. I believe at that time parents were honestly just trying to protect their kids from the perversions of the world to ensure we safely entered the gates of Heaven. Instead, we all just got traumatized and eventually walked away from our faith completely or have spent our adult lives trying to deconstruct and rebuild what the truth of faith and religion are. Do I think the 90’s Church was a cult?! 🤷🏼‍♀️

Stef NEVER left the Church she only got deeper and more involved which led to a pretty dark place for her. Sadly, in my opinion this led her to decide she was just done with Faith altogether. She’s not sad though, she is “living her best life”. She is loving who she wants to love, living how she wants to live and has no fear of consequences of the Church. She is no longer under the magnifying glass put on the “pastor’s wife”. She is living the “secular” life but for the first time, I believe, she’s happy.

What am I even getting at?!? Can we properly live a fulfilled Godly life while also enjoying the “worldy” desires of our heart without condemnation or the fear of losing your key to Heaven? Beats me.

I guess today I don’t really have answers. I certainly have questions but without questions how do we grow? I do know without my past, walking from faith and now back I don’t know how to live without having Christ to cling to. We are all humans navigating life the way we feel the most peace doing so. We are not condemned because we fall short, that is just a scare tactic that I simply refuse to give into. We are forgiven always.

Here we are June 5th… ok I’m not doing thaaaaat bad! My plan was to blog on my one year, June 2nd from being Diagnosed with Generalized Myasthenia Gravis to process all the feels. I’ll tell you though, I’m processing the same today as I was 3 days ago, heck the same as 6 months ago. I honestly don’t even know where to start.

14 years I dedicated my life to being a hairdresser since I was 18 years old, and I was a damn good one. My mom took us girls to Toni&Guy school to have our hair done because let’s be honest, three teenage girls was expensive, so the school was the way to go. Little did she know it would spark my passion and love for hair. I HAD to be one of them and would stop at nothing to get there. I remember interviewing at Toni&Guy Salon at Chapel Hills mall and telling them “I have to work here.” And guess what they hired me!

I write this with tears in my eyes reminiscing all the memories I have. It’s not just about doing hair, but truly the family within T&G. I felt I belonged there. It wasn’t always pretty (nothing is) but I can truly say I am who I am today because of T&G. The leadership team always believed in me as stubborn as I was throughout my career there! I always wanted to be an educator within the salon and I truly loved inspiring the hearts of other young and old hairdressers. Fast forward some years later I became the Director of Technical education, WOW! Here I am living my dream, teaching the “me’s” how to slay the hair industry, making good money, great friends, loyal clients, stable income… there were up’s and downs for sure, but it was a truly pretty happy time in my life full of successes. I can’t say I wasn’t ready for a change but I can say I wasn’t ready for this change.

Two months postpartum, I began to lose control of my voluntary muscles. At the time I would explain it like my body wasn’t computing with what I was telling it to do. I truly thought, “meh I’m low in iron, I just had a baby duuuuh” and mostly I just brushed it off. It only got worse… I couldn’t wash my hair, could barely brush my teeth or put my fork to my mouth, my legs could barely get up my stairs. I would have to use my weak arms to get my weak legs in the car. I realized after putting O down on the bed and not being able to pick him back up at only 2 months old (he wasn’t heavy) that something was seriously wrong and I was suppose to be back at work in 2 weeks! I was scared.

Maternity leave was up and I was ready to get back in the salon. I survived week one questioning the weakness, struggling to maintain strength in my arms. My legs felt like lead but still I moved along. Week two was a different story. I COULD NOT lift my color brush, my foils without shaking trying to get them to my clients head like you would picking up something very heavy. I would make excuses to walk away from my client to wiggle my arms in the break room while near tears telling my friends “I can’t lift my arms.”

This was confusing to everyone. The day came when I was positive I wasn’t going to be able to finish a client and knew I had to be honest with myself, my clients, and my team it was time for medical leave. This was devastating. I needed to work after three months maternity leave. I couldn’t afford not to work anymore but I couldn’t physically do hair at that point… or anything for that matter. Wtf.

Last week I went to see my Neurologist for the first time since January. I am only two months behind. It’s not that it’s a hard, it’s mostly just a quick check in. The more annoying thing “to-do” is the monthly blood draw that I often forget!

Is the weirdest part her checking my eye muscles?? “Shut your eyes as hard and you can don’t let me open them” She’ll also say “lift your legs and don’t let me push them down… hold hold hold.” 0-7 on that one. Has anyone asked you if you’ve been swallowing ok?! I never thought I’d have to ask someone if we could talk about getting pregnant.

Cody came with me this time, he usually doesn’t because they are so routine. I could tell she was trying to entertain it but in my heart I knew she thought I must be nuts. Here I am adjusted to meds (immunosuppressants) and my “spinach” pills still. Overall I am feeling pretty good, the career change has helped that a ton too. My doctor gave us all the information we needed to know and I’ll tell ya I left like “ok cool it’s doable”. Cody however was scared shitless in the moment, totally grossed out at the thought of me having a permanent port (one of the things mentioned) and to be honest I was too.

The thing is I had plans. I wanted to be pregnant right away- if you knew me I always said it. At the end of the day the answer wasn’t no, it’s just a matter of crossing t’s and dotting i’s, getting the yes from multiple doctors, additional studies and tests. But not a no. She left us with this “a third get better, a third stay the same, a third get worse.” Here is the silver lining. God GAVE me a brand new life, yea it came with a disease that threw a slight wrench in all the “plans” I thought I had.

On that day sitting in that office with sweaty hands and an anxious heart I had to choose to trust His timing in my life, thank Him for the favor in my new career, and for being a mama to the busiest orneriest toddler out there and most of all his guidance to His perfect plan. A plan I haven’t figured out yet. Mom’s famous words come to mind, “Some things are too wonderful for you to know.”

"MG fact:
When you have Myasthenia Gravis, your muscles become paralyzed and useless by using them. That is the basic of the disease. There is no "out". There is no "by-pass". No amount of encouragement nor pity will change Science and how your body works. Surviving MG is done by management of the paralyzation. It's a full time job. It's incurable. You often die of it when the disease refuses to be managed. If you see anyone with MG carving a life out for themselves: they've earned it. If they are generally good natured about their plight, they've earned respect."
- Kelly Ann Moeller Drazek

I like this fact about MG because it’s simply put. But nothing about living with it is simple. And HELL YEA us Snowflakes deserve respect for continuing to carve a life for ourselves despite our bodies continuing to fight us for it but not just that we are grieving the good-bye of our old lives, bodies, careers and so so much more loss that many of us face. For me it’s honestly a full time chore some days for my body, much like never ending dishes, beds never made, laundry piling up, don’t even get me started on kitchen and floors.

Where I get stuck in my head having this disease is more the ability to do the things I want or don’t want to do but it being stripped away from me overnight is a different story. Don’t get me wrong you’ve rarely seen me in a gym however it always came in waves for me but now I’m “cleared” to get in a pool… yay my favorite. 😏 It’s not just about working out of course that just comes to mind because losing weight has always been a thing for me that felt daunting so hey let’s throw a muscle disease in there too. If I sound bitter it’s because I am. I want to go to Red Rocks with my friends and not consider my “handicap.” I want to be FREE. What I want most of all is my confidence back. Something happened to my self esteem that day being told I have MG… blog in its own.

If you know me change isn’t my favorite thing around but necessary I’ve decided. My headspace for the most part is pretty plight I get the Yin and Yang in life. What I know I needed was a dramatic change in my life to push me to be the person I was meant to be and living the life I was meant to live. I had all the opportunities in a body that could, to do the things that my body can’t do now. I chose to just “chill.” Chill in my faith, chill in my career, chill in life and worst of all chill in a body that had the ability to MOVE.

I don’t want to chill anymore. I’ve realized so much about myself over the last year of having Myasthenia. I learned how to FIGHT! Fight to get my life, my body, my confidence and a career back. Odin is who put the fire under me to not just survive this the rest of my life but to learn to truly LIVE.

I believe satan comes to steal happiness and yes some days he does and I let him but I have to remember I was blessed with brand new opportunities that otherwise I wouldn’t have or had the courage to entertain. Now I don’t even blink at change… ok I won’t go that far! I’m in control of things I can’t control. Does that make sense?!?

MG is an autoimmune disease, meaning the immune system which normally protects the body mistakenly attacks itself. That being said MG is caused by an error in the transmission of nerve impulses to muscles. It occurs when normal communication between the nerve and muscle is interrupted at the neuromuscular junction the place where nerve cells connect with the muscles they control.

After finding out about how severe my case was my Neurologist sent me to get a CT scan to see if there was a Tumor on my Thymus. What the hell is a Thymus lady? As it turns out it’s a gland near your thyroid and basically is active up until puberty, then shrinks after, lays dormant and in my case it never shrank. It this for real linked to MG? I guess so.

I was SO nervous to get this CT scan. Why? I don’t know I’ve never done it before or was it the fear of what they would find? I don’t think that was it either because I wanted answers. Who knows. As I sat there ready to pee my pants with nerves I hear “hey stalker” and look over and THANK GOD it’s a hair client of mine!! If this wasn’t a God wink I don’t know what is. I immediately felt at ease after that.

Just goes to show God had his hand in this whole thing from just the tiny part of calming my nerves!

Results are in and there is what appears to be a Tumor requiring a thymectomy which is the surgical removal of the thymus gland, which has been shown to play a role in the development of myasthenia gravis. Roughly 10 percent of patients with MG have a thymoma, or a tumor on the thymus gland. I knew I was some kind of special.

At the time is was actually great news. I can remove the Thymus entirely, hopefully find immediate relief, heck maybe even go into remission and most cases this can be done laparoscopically… not mine apparently. I’m one of the lucky ones who had to have a Partial Sternotomy and fast two weeks later. Not to mention I have a 5 month old. 😐

July 7th, 2021
“God please don’t take me from my baby.” These were the words I cried while rocking Odin to sleep. I have never been so afraid of the “what if” in my life. The eve of realizing what was ahead for us and leaving you to go have a massive surgery. The eve of knowing that when I return it would be six weeks of no picking you up. Six weeks of having someone have to babysit me and you. Eight weeks before returning to work after being off three months. Eight weeks of fear we won’t be able to pay our bills. And here I thought not being able to put my fork to my mouth was scary.

The tears didn’t stop for what seemed like hours. On this eve I was brought back to God. The overwhelming comfort I felt the next morning heading to Denver for my pre-appointments before someone busting open my chest is indescribable and with Christ back in my soul I didn’t look back l. I pressed forward with confidence and peace but my oh my I was a weepy mess!

July 8th, 2021
I say goodbye to my Husband and Son. Had I not had my “come to Jesus” where I truly felt his presence and protection this goodbye would have been terrifying. I knew I wouldn’t see my baby for days. Days of no nursing and if I’m honest the thought of O not nursing after so long was the saddest and hardest part of the whole thing.

July 9th, 2021

Where am I?! Is this a cafeteria? Why are all these people rushing around me? Oh wait that’s right I just had a my chest cut open! It’s the weirdest feeling sitting here thinking about that day. I have never experienced so much pain in my entire life. You can’t be warned about this kind of pain. I remember waking up and telling them “please help me I’m in so much pain.” I was also hell bent on pumping right away (so were my boobs 😜 ) and not taking anything that wasn’t out of my system or safe for nursing… so basically Tylenol. O was my motivation to get through this and come home to his sweet self.

They wheeled back to the ICU where I would see Cody and Mom. What was odd was knowing they had been waiting nervously, anxious and patiently for four long hours. The moment Cody walked in I could see the relief but sadness on his face. I’ll never forget. I am literally whining in pain and he sitting there helpless... I can’t imagine being on the other end of that. Mom came in after Cody and it was a comfort like no other. I don’t care how old ya are Moms are always a different level of comfort.

It’s was truly a humbling experience to have someone literally doing everything for you. Being told to remain in “t-rex” position the next six weeks seems unrealistic but then again every movement was piercing. Let’s not even talk about laughing or coughing. My heart pillow was my best friend clinging to it to keep my chest still. Having nurses help you go to the bathroom, adjust the pillow 89 times to try to get comfortable, being woken up all night to take medicine and put oxygen on. Laying there trying to understand how I’m going to do this on my own at home let alone Mommy my 5 month old!

All in all my 3 days in ICU was good but boring. Cody stuck by my side the whole time not just in the hospital but to this day he has shown me “through sickness and in health, for better or for worse.” The good news was that there was a Harry Potter marathon that kept a a busy until I had to take my mandatory walks. All I gotta say is this dang surgery better have worked. There were/are high hopes that having no Thymus which is known to be the source of production would help my symptoms but honestly hopes of remission.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”
2 Corinthians 12:9

I’m sure you’ve heard the expression “life is a roller coaster” Up’s, down’s, twists, turns, high’s and low’s. You get my drift. The issue is this “life coaster” doesn’t come with a manual or a crew to help “fix” what’s been broken. On the flip side
sometimes getting to that low is the only way to find yourself and climb back up… as long as you do it.

If I can be transparent, the last few months have been eye opening to say the least. It’s funny how I thought nothing touches last year physically and this year I think nothing touches it emotionally. This year was a year of growth mentally in my life but it didn’t come without the pain of rock bottom and the months of feeling absolutely alone in my journey out of the pit. Alone because I told myself I was alone.

I spent the better part of this year with crippling anxiety. The Devil on my shoulder telling me ALL the things. I tried so many times to shut that ish down but I really had to wallow in it. Really beat myself up before I could FINALLY start to hear the Angel on my other shoulder telling me to have the courage to truly address the things in my life that we’re keeping me in bed. The courage to say no more lies, no more self hate, shame and guilt.

If I can take anything away from this post today is that it is way easier to dig the pit than to get out of it but not only that I truly believe humans are not meant to live life alone, no one wants to ride a roller coaster alone am I right or am I right? No matter the situation is ALWAYS TALK TO SOMEONE.

I can’t even begin to thank the humans in my circle. It may be small but it is mighty. I am so thankful for those of you who mentioned or bugged me to get blogging. Why did I stop writing… It is so good for my soul! I’m back da-na-na-na-na-na-na-na-na-na.