Recognized and Valued BECAUSE of One of my Worst Moments

 As I walked out the door I heard, "Wait!! I think I know you and I feel like it's significant!" She grabbed the door and I recognized her too but did not know why. We exchanged names but neither of us recognized the other. She tried again, "If it helps I teach nursing at the local college and have been a nurse for years."

"Ooooohhhhhh," I sighed, "If you worked about 15 ish years ago I practically lived at the hospital."

"Really? It must be that...but I feel like..."

And suddenly a memory came to me and I asked, "Wait. You wouldn't happen to be the nurse that held me?" And she finished my sentence, "In the hallway on the floor?" 

Before I knew what was happening she started crying and I was swept up into her arms, "You changed my nursing career! You impacted my life so fully! You left me a note and flowers stating how important that moment was to you. For years I thought of you and have used you as an example of how to follow your heart in nursing. I wasn't sure if I was crossing a line..but I felt so strongly that you needed me but I was unsure even after...and then the next day your flowers and note came to the anonymous nurse who held you...and I cried."

I was still being held by her through this whole dialogue as she was occasionally swiping her tears...to the point that I was tear filled from her expression. I have a terrible memory so it surprised me that I even thought to mention it. It has been so bad lately that I have simply given up on trying to salvage memories and instead I have prayed, "Please in the moment help me to remember what is important to other people or what is significant to share from things I should know." I'm so grateful this moment (however humiliating it was to me at the time) came to me.

"Thank you for following your heart," I sincerely stated, "I thought I was dying that night. I was so depleted from years upon years of being on IV and pain meds through horrible attacks in my abdomen and bad rashes and pain. I was constantly at the hospital and most nurses after awhile treated me poorly and attributed it to hysteria or anxiety but I could not make up the pain. The pain triggered the anxiety. Not the other way around. Years later I was diagnosed by a natural health practioneer with long term Lymes Disease (though not acknowledged by public health), Fibromyalgia from my former Doctor, multiple cycle diseases (PCOS, Andenomyosis, Endometriosis, Chronic low ferritin and Anemia) and finally Celiac. That night was my final straw because I was strung out on fentonyal (which I hated as it made me so loopy) and had been puking my guts out to the point of a little bit of blood coming out plus sitting on the toilet. I was so exhausted and desperate that I took my IV with me out into the hallway, slid down the wall and started bawling...and there you were, with your arms around me and I felt like it was an angel. Later I was appalled at my desperate drugged out behavior but you stuck with me. You gave me hope. You also changed my perspective slightly on nurses."

She gave me another hug and then her mother came around the corner, "MOM!! this is the girl! The girl that left me that note that changed my nursing career!" I recognized her mom too and she smiled, "Hi Kmarie (insert real name) I remember you. I worked as a receptionist at the hospital for years."

A part of myself shrunk inside. Of course the previous receptionist remembers me by name! I did not recall hers but she stated it and it was immediately familiar. I almost can't believe that was my life. Most of the time, if my health is brought up with new friends, it almost feels like I am lying. Because even though I struggle with energy and pain...I learned how to mostly manage my conditions to a degree. The pain attacks stopped exactly three years after my last taste of gluten. I still get them lightly if I accidently get glutened  but it is not near the same as that terrible 24-48 hours of a tight rubber band wrapped around my abdomen to the point that I could not even have a sip of water for a full day. It was absolutely hell on earth sometimes. To hear that I impacted someone in one of my worst moments was both validating and jarring.

I was at my worst on that hospital floor. I am a germaphobe by nature so the fact that I was even sitting on the Emergency room floor says something. I also am not naturally a person who likes to pubicly share my pain or be recognized while I am in a state of duress...so that fact that I was out of my room also shows my desperation. I was stinky. I was pale and shaky. I was out of it from the drugs coursing through my veins ( that did nothing to touch the pain by the way but only made time feel both longer and shorter which made everything more confusing.) I was completely vulnerable and weak...and when I arrived at the hospital one of the nurses gave me the "Oh it's you again" look and treated me with cold contempt. 

So for this nurse to say I changed her at that moment??? That truly testifies to me that sometimes when we are at our weakest, God is there to use us regardless. We are still a worthy vessel. We can still impact lives. We can still be given a different type of strength.

In all honesty, this is a tough story to tell. I was embarrassed to even show up with flowers and a card that was addressed "To the nurse on call Thursday night and the one who held me." I felt that the entire staff at the hospital was mocking me almost. I felt foolish but something in my spirit told me I needed to be acknowledge that beauty. I was taught by my Grandma, who lived in and out of the hospital with Colitis and a bowel pouch and then cancer, to treat those who help with extreme gratitude. She taught me to leave flowers for my Pharmacist, Notes for my Doctor, Christmas gifts for those who really helped me get through tough times... It was not until one of my friends was shocked that I did these things that I realized many people do not do this. And then I felt silly again.

I was between 20 and 30 when this event happened. I will be forty this year. I wish I could go back to my younger self and say, "You are legitimate in your pain. You WILL figure some of this out. You will suffer and continue to suffer with depression due to pain and energy on and off through the years. However, you will find supporters. You will find information. You will find some answers and some triggers. And believe it or not, you will not visit a hospital (besides blood tests and breaking your foot) for NINE years! You will avoid them like the plague instead of running to them! And you will find some angels on earth...

I wasn't going to the event where I met this nurse last week. I was not feeling well (again.) With chronic illness I pick my battles. My son specifically asked me to please try to be with my family...so I went. I was making a hasty exit to go lay down when this lady ran to me and held open the door as I was trying to escape. I didn't feel like talking. Yet, I have often found that in my weakest, Spirit shows up. Or that sometimes when I don't feel I have much to give, Spirit is still given. Or that sometimes someone needs me, even when I do not feel like showing up, and if I force myself to BE present, something magical happens.

Invisible Chronic illness is a tricky thing. I don't like to talk about it anymore yet it is still a huge (mostly secret) part of my life. I look like I am in the prime of health most days, besides being extremely pale for the native blood I have, but with a ferritin of two and a blood saturation of 0.13, that is to be expected. I went through a huge phase in my late twenties when I needed to blog about health constantly to work through the diagnosis process. I feel that is legitimate. Just like I feel this phase of rarely speaking about it is legitimate too. But I am grateful for a few lessons from my weakness.

1. If I have hidden things to deal with, it's easier for me to remember that everyone else has secret struggles. When I am dealing with someone I try to recall this fact.

2. In our weakness, Spirit shows up. A verse that has always been of great comfort to me has been, "Blessed are the poor in Spirit, for theirs is the kingdom of heaven...and blessed are those that mourn for they shall be comforted." There are silver linings in struggle too.

3. Sometimes weakness allows another persons strength to shine. Sometimes our weaker moments can also later be turned into a strength.

I am not glamorizing illness. As I stated, I go through depression dealing with it on a regular basis. I find it tough not to compare. It’s hard for me not to wish I was only tired from a busy life or a bad night and not blood tired ( which sleep does not much for). Yet, I also don’t want to be a complainer or known for “ being tired.” It’s a state that I just live with. Some days it beats me, other days I try to befriend my own Being. I’m this fallen world, it is what it is… but I’m still SEEN. 

My family and I love to watch The Chosen series ( free on YouTube or the App) about the life of Jesus and his disciples. Even if one doesn’t subscribe to the faith, I would still recommend it for its historical accuracy, storylines, and beautiful sets and costumes. Anyway, in season three there is a story of the bleeding woman who I’ve  related to since puberty with my extremely heavy cycles. This woman is ostracized from her family in a time where being alone as a woman is dangerous. She is culturally considered “ unclean” due to the laws. She is anemic and exhausted from bleeding for years. As a desperate attempt she touches the hem of Jesus garment as he’s walking through a crowd on his way to visit a dying sick little girl. Jesus has an excuse to be in a hurry. (The little girl dies but he revives her later.) Instead the lady is immediately healed and Jesus stops and asks “Who touched me?” He knew, but he was giving her a chance to be SEEN and for her to use her own voice. No one, especially a man, would deem her worthy to speak to. Then he calls her “daughter.” This is not creepy but significant because her own family would not claim her due to her disease. She was unclaimed and thus, unprotected. By stating this protective title, Jesus was stating in essence “You are seen. You are worthy. You are protected. You are healed.” 

Maybe it’s ok to be seen and recognized and remembered for one of my worst moments?

I get bleary eyed each time I read that story but seeing it on screen ... I wept. I may not be healed in a huge way, but if I’m honest, I have small ways of healing. I have moments to be grateful for. I’m protected. I have loved ones. I’m valued in some of my communities. I have much more than this woman. But what we have in common is that we are SEEN in what we perceive as our wretchedness… when we are heavily bleeding and hurting and so so so tired… and we are still loved. 

May it be so. 

Song Choice  Woman at the Well (which is a different biblical story about a woman being SEEN):

https://www.youtube.com/watch?v=JVfI1b2aK64

Down the Rabbit Trail: Connections between Music, High Histamine, Food Intolerances, Panic, Low Ferritin, Autism and Wonderland. The MTHFR Gene.

* I gave into my quirkier side with this post. My voice, when reading this, is slightly sarcastic with a tinge of humour at myself.*

Image from HERE

Living in my world is like Alice (from Alice in Wonderland) following the Rabbit down multiple crazy trails of connection. For the record, since I was little I have had a tendency to hate "Alice in Wonderland" and yet, many of the quotes are brilliant and tend to explain many aspects of my life. I see the irony. In my youth, I found Wonderland to be frustrating, yucky, disturbing and confusing. I wanted clear answers. I wished for happy endings tied up in a bow and set to music. But alas, I can relate to Alice and her journey in too many ways to write it off. It's a reluctant connection.

I realized in my mid twenties that this was because I already lived halfway in Wonderland myself. Being an undiagnosed Aspie and INFJ personality not yet discovered, I never fit in. I saw the world in weird ways that were normal to me but to others...well, let's just say I received many blank looks or derisive remarks about statements that seemed ordinary to me. I did not realize that I was the anomaly. I thought the world was weird.

This sentiment is expressed in this song; "I close my eyes, and I can see a world that's waiting up for me, that I call my own. Through the dark, through the door, through where no one's been before. But it feels like home. They can say, they can say it all sounds crazy. They can say, they can say I've lost my mind. I don't care. I don't care. So call me crazy. We can live in a world that we design... 'cuz every night I lie in bed, The brightest colours fill my head. A million dreams are keeping me awake. I think of what the world could be, a vision of the one I see. A million dreams is all it's gonna take. Oh, a million dreams for the world we're gonna make." (*1)

The reason I craved solid, clear answers was because the sensory data and the way I processed was non linear. The outer world was often pure chaos. What was solid to others was wonky to my perceptions. I wanted happy endings because my inner world was often focused on the morose. Death, pain, conflict, and the existential crises' were my 'regular' mindsets from early ages. These all contributed to my craving for moments of bursting into song. Music healed me. It conveyed what I could not. I have always been verbal but being able to express what I felt outside of paper often was impossible...but then there was music. The light, fluffy and happy were a contrast to my normal mode of darkness. Or the music would comfort by confirming darkness too. As of writing the sentences above, the lyrics to Metallica's 'One' ran through my head. "Darkness imprisoning me. All I see is absolute horror. I can not live. I can not die. Trapped in myself. Body my holding cell."(*2) There is still not a day that goes by that I don't think of death - this mindset of mine doesn't scare me anymore ( as it did in my youth) because it has been my constant companion. I think it gives me this sense of ability to live in the moment and be more empathetic and make choices that matter to me. But sometimes I wish I could live without thinking about it for one whole day. What bliss that would be!

This is why I like happy musicals and people innocently bursting out into song. It seems normal to me because that is what happens in my head. ALL THE TIME. It's like the movie 'Teen Beach,'  which my daughter is obsessed with, and the song, "I can't stop Singing." (*3) "I'm losing my mind!' 'I don't see your problem?' Everything I do, it rhymes? Here comes another line...We're trapped inside a musical...At least I'm here with you. I don't want to make it stop...Oh I can't stop singing. La la la la la ...."

My brain works best via connections. I see patterns that most people don't pick up on. My gut instinct just KNOWS based on these many subconscious and conscious details what the outcome will be for many relationships and situations. I have rarely been wrong... if ever, but I downplay this because people hate it. I don't think it's pompous because I am aware that I am extremely inferior in other areas of life. For instance physics blows my mind! I am intrigued by the subject of Physics because I never fully grasp it. Math is virtually impossible to me. Moving appropriately in the world is also something I will never be good at. So I think I can claim my main gifting without being egotistical. That's my running theory anyway.

Alas, I am less apt at making these connections as fast when it comes to myself. I will get there eventually but it takes quadruple the time it would (or more) than for any other outside forces in my life. For instance, the other day, two hours after eating tuna for lunch I started my trek down the rabbit hole...

It began when I was pleasantly reading a young adult fantasy novel. I was engrossed in the world of Norse myths with Led Zeppelin's 'Immigrant Song' pounding in my head (*4) when suddenly I was jolted out of Alfheim with a strong iron taste in my mouth. (It takes a lot for me to be taken out of a novel.) "Did I bite my tongue without knowing it? Nope, no blood...but the taste is so strong! No matter, I will just ignore it...Nope, I can't ignore it. Suddenly I feel weird. Like something is not quite right somewhere inside of me. My insides feel a little topsy turvy. My heart rate is up a bit...which is inducing panic. But the panic came AFTER the heart rate so I know that this is not a panic attack but a list of symptoms. Is there a connection between what I ate at lunch? I've got weird abdominal cramps all of a sudden. I feel dizzy and my heartbeat is in my ears. What could this be? I can't make it out. I am confused. I know! I'll call mother."

When I call my mother it is because my husband and bestie are unavailable or I don't want to bother them. Mom is next on the list. The problem with figuring out my own issues, is that I am the worst when it comes to processing my own bodily experiences, if I can not verbalize to someone what is going on. I need them to listen, then brainstorm with me, tell me what I already guessed because I am doubting my accuracy, or in worst case scenario tell me it is "normal." Normal being the operative word that I always attain to and never fully grasp. This is what I miss about therapy...among many other factors.

I called Mammitta and she told me sometimes that happens with low iron. She calmed me down a little but listening to my own voice jolted me into looking up tuna and iron taste after my call. I didn't think of doing this before even though this is EXACTLY what I would do for someone else. I would look for all the connections first, before giving answers. I found THIS (CLICK) article. It had all the symptoms I was experiencing. Perhaps I had a mini poisoning?

On and off through out that day I was fighting light symptoms and panic. Finally after midnight, I noticed my son's light was on, so I went in and discussed my panic with him. I know, not a thing most parents do, but it's normal in our house to verbalize everything to everyone. I told him that I was worried. Maybe it was my low iron? Maybe I needed to take iron and vitamin C? He told me to go do that right now, so I, being the rule follower in panic that I am, obeyed my son. We discussed life some more. He also mentioned that I should not be jogging on the treadmill with my levels. A mistake that I had been making that week. Turns out he was right. See HERE (CLICK) for more. To sum up, I should have listened to my Physiotherapist and only walked a maximum of thirty minutes a day. NO jogging or strenuous activity or muscle building was allowed. I was told this explicitly.
I sometimes hate my life.

This is not what a 'J type' go getter likes to hear. Chronic illness slows down my life and this has multiple lessons that are fantastic, but sometimes I want to SPRINT. I want to go at the speed that my default is on...fast mode. I am supposed to exercise with Tai Chi. My youngest loves it. He has slow processing and I think maybe Tai Chi feels like his pace. To me, it is PAINFUL. I have to tell myself, "Yes you are still working your body even though it feels like you are doing a snail's pace. This IS exercise." I just want to dance or jog. When I am on the treadmill I take it up to the maximum fast paced walking just before a jog. But I really, really want to jog. I also want to burn more calories and get rid of my pregnancy belly. "But we can't always get what we want, can we K?" Que the Rolling Stones (*5). (I talk to myself a lot. Apparently it's a sign of intelligence and not craziness. Ha ha.) "Not dying from a sudden stroke would be a good thing even if you do end up living with a slightly protruding gut. Priorities. Stop being vain..." and then I focus back on the Tai Chi until the next minute when I go through the conversation over again...That part, I think qualifies for insanity. Engaging in the same conversation over and over and expecting the same results... "It's not that easy being green, having to spend each day, the colour of the leaves, when I think it could be nicer being red, or gold or something much more colourful like that..."- Kermit the Frog or Frank Sinatra (*6)

(A side note...if you are a woman who experiences panic yet know you manage stress and anxiety well, you could be Anemic. Don't allow Doctors to ignore your exhaustion or unexplained panic. Get a Ferritin test. See HERE (CLICK).)

I went to bed shaking and finally fell into a panic induced sleep but woke up early to immediate dizziness, rapid heartbeat and abdominal discomfort. After another bout of panic to my hubby and multiple trips to the bathroom to pee (In non medical terms, this is caused by the kidney being triggered by hormones to release extra water storage. It tends to be the most common in Fibromyalgia but can happen to most chronic illness sufferers. My doctor explained it as an 'abnormal normal' response in these types of diseases when the body is inflamed or triggered by common illness, food intolerance's or sickness. 'Abnormal Normal' seems like an appropriate subtitle for my life.) I realized I did indeed have tuna poisoning.

But why did I have it and the rest of my family didn't? My brain snagged on to the DAO enzyme reference in the article above. I typed 'DAO enzyme' into my browser and of course, the bane of my existence popped up, AGAIN. And in my mind, the opening, jolly piano chords to Dolly's song strummed on Que, "Here you come again! Just when I'm about to make it work without you...And there go all my defences. Just leave it up to you and in a little while, You are messing up my mind and filling up my senses...Here you come again...Shaking me up so, and all I really know... Is here you come again- and here I go." (*7- I also wrote a post based on this song and chronic illness HERE. It's an ironically cheery song for such subject matter.) The freaking MTHFR gene. It appropriately sounds like a swear word.

Doctors are divided on the MTHFR gene. From my extensive reading and confirmation from both a Doctor and Naturopath who believe in it, I have one of the multiple mutation forms of MTHFR. It affects everything from leaky gut to depression to autism to chronic illness, low ferritin, low vitamin D, high histamines...the list goes on and on and on and on and on. I hate it as much as I do Lyme disease. Oh and guess what? There is a clear connection between Lyme and MTHFR too. Why do I hate both so much? Neither of them have definite cures or paths that are solid. The medical community is ignorant on both topics. The literature is vast and confusing at times or contrary on both conditions. The healing diets can be expensive and contradictory. Basically, they are Wonderland diseases. No solid answers. And I have them both. Or maybe they both are the same somehow and have me? Either way, they are both a part of my existence. Lucky me. "She's a killer queen, gunpowder, gelatine, dynamite with a laser beam, guaranteed to blow your mind. Anytime."- Queen (*8)

Anyway, THIS (click) article told me all I needed to know about my current condition. I was ecstatic as a person can be while being physically drowned in uncomfortable symptoms. When I find information that connects and rings with truth I get very excited. Even if I am sick in bed. I texted my bestie, hubby and mother to tell them all that the pieces fell into place. (Yea I am high maintenance like that. I expect those closest to me to read as much as I do and connect the dots euphorically.) Due to the diet I have had the last few days and then the tuna, I was overloaded with high histamine. Which explained why last night I felt like I was having a food allergy and why my skin erupted with boils on my stomach among all the other symptoms.

Armed with that information, it became easier to fight the panic. The panic made itself known at varied intervals because it was a biological response *due to food* and not a mental one *triggered by the brain first*, but knowing WHY made it easier to ride through it. It took me almost a complete 24 hour period from the first symptom to my final conclusions of WHY. In the old days of my life, I would have gone to the hospital in a panic the night before when I had trouble breathing and a rapid heartbeat. With time and more knowledge of why I am the way I am, I can luckily skip that step and come to my own rescue most of the time. My medical intervention after re checking the accuracy of my personal diagnosis was; rest, high levels of vitamin C, D and taking my iron, and eating a diet that would not trigger histamine. I would just have to wait out the rest of the symptoms since I seemed to be over the worst of it. I was impressed that before I even knew the information, somehow it seemed right to me the night before to take a large dose of vitamin C and an extra of my iron. That did end up aiding my sleep and regulating my body a bit. I like it when I actually listen well to my body's needs.

In certain areas of my life I am quite controlled. The rest is a rather "organized" chaos. I am sometimes Alice navigating Wonderland and at others I am Wonderland exploiting Alice. I feel this also shows up in slight ways when I write. Most of the time I go to my "J" fact orientated, 'tell it like it is' philosophy with some encouragement on the side. But sometimes, when I am sick enough to shut down my "J" or when I am in a frivolous mood, I write expressively or even poetically. I "show" more than I "tell." What a good writer is supposed to do apparently, but I often just prefer to blog like I talk to my husband (but with less details and expression.) In my drafts folder, I have a post on chore schedules and cleaning hacks, along with a descriptive story on a beautiful sensory day. I may not publish either of them, but it is likely that the "Chore" post will show up eventually over the sensory/poetic. Why is that? I actually enjoy 'shown' detailed writing, but I also appreciate straight forward tips and hacks or stories. I think, it is because inside of me the sensory is already exploited, so I try to re balance the force within? Perhaps? Regardless, I usually rely on music more than writing for that form of self expression. Music is my "show" of life. With that in mind, I will leave the songs on the bottom of this post to explain what I can't verbalize as accurately. What I love about my mind is that songs from 'Teen Beach' and 'Metallica'  can fit perfectly together within a topic. They shouldn't fit but they do! This particular talent of mine to fit dark with light, is something I delight in.

"There's a house we can build, every room inside is filled. With things from far away. Special things I compile, each one there to make you smile. On a rainy day. They can say, they can say it all sounds crazy. They can say, they can say, we've lost our minds. I don't care, I don't care if they call us crazy...run away to a world that we design...."(*1)

Two posts that I also specifically mention Wonderland are:

http://worldwecreate.blogspot.ca/2015/11/still-there-is-much-that-is-fair.html

and 

https://worldwecreate.blogspot.ca/2016/05/how-to-support-and-love-autistics-in.html

Also see the Wonderland label for more posts along the quirky lines of self.

Side note; I was disappointed that AC/DC's 'Thunderstruck' didn't show up in Thor ... seemed like an awesome opportunity but I was impressed the 'Immigrant song' showed up ;)

*1- A Million Dreams- Greatest Showman. My current fav. song because it feels like my life.

(*2) Metallica One. Click HERE.

(*3) Can't stop singing- Teen Beach

The Immigrant Song- Led Zeppelin (*4)
You Can't always get what you Want- The Rolling Stones ( *5)
Frank Sinatra- Bein' Green (*6)

(*7) Here you come again- Dolly Parton


(*8)  Killer Queen - Queen ( yea I know what it is about. Always assume I know the songs original meaning but also know I enjoy spinning music to my purpose. lol.)

Bonus song:) Wonderland: