Limited: When Thriving Isn’t an Option. Low Ferritin And Spirituality And Meaning.

How do you deal with limitations? The kind that are not surmountable or conquerable? When solutions fail and conventional methods have devastating effects? How do you feel about the phrase, “I want to thrive not just survive”? How does a person with limitations of any kind learn to live a life of meaning and inspiration? Can limitations be a blessing in disguise? Are they somehow redeemable or do they just suck? Can it be a both / and situation? 

I’m limited in many ways. However, there is one limitation that affects other limitations. It is a ‘trickle effect limitation’ that stems into other categories like weight gain, depression, self esteem, anxiety, energy and a general knowing that I can’t do the things I generally want to do as a “go getter.” I’ve written about this before. Multiple times. I’ve come to terms and peace with it - and then cycled around to grappling and trying to control it. I have often viewed my consistent low ferritin as the proverbial thorn in my side or Achilles heel of autoimmune disease symptoms. I have other long term diagnosis to deal with, but it’s this one, that gets me down the most. Because I’m at a catch 22. I’m allergic to the solutions and had a life threatening experience the last time I went under anesthesia. So I am quite literally stuck. Which means, when there is not much a body can do about an existing condition, there has to be some sort of understanding to ease the burden, a process of both grieving and acceptance (over and over again) and a general support system. 

I have found personal Forums and Reddit to be that place for me. Most doctors don’t get how it feels. It takes a fellow sufferer to understand. Thus, I’m including some pictures of Reddit forums below this post but I’ll summarize them. To put my situation into perspective- currently my Ferritin is at a 1, and my hemoglobin at an 8.3 ( in Canada 83.) It was slightly higher before, but my regular cycles completely wipe me out each month. I can usually guess when I’m up or down a point or two from my latest bloodwork. There are times each month when I drop off the face of the earth and stay around my bed. I can’t even have people over to watch shows during this phase.(Conventional medicine is out of the question for my body - believe me- I have tried all the solutions I can, as I have been severely anemic since the age of thirteen. I have also suffered some extreme trauma in medical situations I’m still not over.)

On Reddit, there are many forums for my symptoms but one of my favourite feeds was titled, “How many of us are actually bedridden?” Another was, “Do you constantly feel like you’re slowly dying?” The general consensus is that all these sufferers feel “lazy” and like even folding laundry is exhausting. That’s relatable. For myself, my heart goes through the roof when I pick up my cat or climb the stairs. My children usually bring the cat to me. To an outsider, it looks like my family waits on me a lot - which they do. Our rhythms and normal life look like I’m a total Princess (which admit-tingly, I kind of am sometimes. I’m so lucky they get it mostly.)

(This bookmark cracked me up.)

I’ve dealt with this for so long I know the tricks to look “healthy.” In fact, I’ve been told by doctors there is NO way I have what I have - and then they look at my bloodwork and they are astounded by the facts staring them in the face. The most common comment is, “You look so healthy and energetic! People at your levels are usually bedridden or hospitalized.” One of my more astute Doctors looked at me and stated, “I bet after this appointment you go home and lay down to recover for a couple hours.” Yup. I also wear bronzer to make my previously olive skin tone (which is generally a sickly pallor now) shine through. To me it’s not fake- it’s what it would be if I was healthy. I wear hair extensions when my hair falls out (which it does in cycles.) I cover my nails when they start yellowing or are white due to lack of oxygen. I wear three layers of eye concealer and sparkles to cover or deflect from my dark circles that could often rival Franklin Rosevelt’s. I use silly words to cover the fact that my memory loss is showing up at the moment. There are MANY other tricks I do to look as healthy as I can- I mean, dignity brings a certain level of humaness. I’m also naturally a go getter and high energy person, who can be extremely disciplined at bringing the energy game to life, even while feeling like I’m dying. Some people feel this is fake but it’s not. It’s me trying to live my best life despite my reality when possible. I’m genuinely interested in most people and I want to bring kindness and energy to the conversation. I dislike explaining or being a victim. I also dislike the judgments or the well intentioned solutions (but that is my pride speaking there.)

But the evidence is in the pictures below. I’m not alone. It does sometimes feel like I’m dying slowly. Ordinary tasks sometimes have me gasping for air. Movies with friends are my best way to get quality time while still “fitting in” because I don’t have to exert myself. It looks lazy often: it’s a coping mechanism that enables me to still feel like I have a life. I attract high energy people sometimes, but then I get left behind. I pick and choose events based on timelines where I can feel I can bring it! I pay heavily for some events but that’s the cost I’m willing to pay if I’m there generally. Sometimes I need better plans. Recently we spent a family gathering outside our home for 8 hours and that amount of sitting without laying down for my heart with lack of oxygen had me quite sick afterwards. It’s taken days around my bed or couch to recover. Next time I may have to count the cost and decide on a better plan. My family doesn’t love leaving me alone to go do the things either. They generally understand how painful my limitations are and lucky for me - they like to include me. They try to include me on what I feel I can handle. Sometimes they restrain me from myself. I take on more than what I can chew often because I WANT to be ABLE. 

Which brings us full circle to my original questions. 

Thriving is a privilege. Surviving is too actually. On many days I’m just grateful I’m alive to this precious life. I know I’d be dead if I’m ever in any situation where I bleed at a normal level ( any accident really.) I read a lot of WW2 stuff and I know I’d be the first to go. My family knows this too. I’m weak but I don’t want to be. I try to be strong for the level of weak I am - if that makes sense? It’s another reason why Elphaba singing to Galinda in Wicked “I’m limited… and look at you- you could do all I couldn’t do…” gets me every time. There are things I have to pass the torch on to someone else who will be inspired by me to do it. I won’t get the credit unless it’s a rare and lovely exception. I won’t be SEEN by anyone other than God. I can even look like the bad guy. I may be the one to start a movement but honestly, I’d rather be the one to finish. That’s not the case most of the time. I long to be active and beautiful. To shed the extra weight I have literally and figuratively, and run in the fields with abandon. I struggle with “normal person envy.” There is so much to unpack regularly. 

YET, there is a silver lining. Limitations? In faith, they are what points me to something Greater. I’m consistently running to the One Whom is Stronger and Understands (OK yes, I also run to Google often too which just makes my anxiety worse.) My meaning is not often based on the world’s standards of “get it done!/ be capable!/ live your dreams!/ be all that you can be!” Nor the Christian version of that either (I’m living in that context) which looks often like “be the greatest example!/ be a constant witness!/ change the world!/ bear fruit!/ find your purpose!/ do great things for God!/ you were meant for more than the ordinary!” 

The last phrase is true to a degree - we were made for more than the ordinary - because we were made for a Creator who loves and has more for us. Yet, that doesn’t translate to performance. My situation is redeemable when I reframe it in the kingdom upside down. When I see that the sum of my life is contained mostly to my house but also to the people I have IN that home… when I’ve given hours of my time in discussion to someone who is struggling - and then they get to go live life - and I’m mostly stuck to my couch/ bed or deck… I have a perspective choice. I get to ask myself, “What truly matters on my death bed? What matters to the heart of God? How did Jesus spend most of his ministry?” The answers are swift and like a healing balm. I’m not Jesus but I love that model of spending a life talking, taking the time with other outcasts or people who are sick, and don’t feel like they fit or need respite.

 I’m not God. My limitations often stop me from being my own type of god. It can be deceptive - being able to do all the things. When the ability is taken away what is left ? 

My husband stated to me last night when I was reading Reddit feeds to him, “ Honey, the only reason we often forget you are quite sick or limited is because you forget. You are so good at pretending to be normal, pushing through and not spending all day in your bed even when you are craving to, and disciplining yourself to present a certain way, that we are even fooled. By You! Sometimes you have to be the one to realize your limitations. I know you know but sometimes it doesn’t translate to action. We also want to respect when you want to and CAN do something or choose to take the cost- so you have to set the tone.” 

Easier said than done. I don’t want to be the person who is continually pointing out how limited I am. I don’t wish to be a martyr or a victim. I also don’t wish to de value the life I’ve been given or the limits I’m responsible for. For better or worse this IS my reality. God knows what is possible and what I’m responsible for- in that I can rest. Daily I run through my gratitude list. Topping it is my family that has SEEN my struggles and successes and whom still deeply love me. They truly do treat me like a precious human. They help me physically and respect my help mentally, emotionally and spiritually. I’m in an optimal position for what I deal with. Being out in the world isn’t easy but inside my home - I have it good. Which is what I try to share with the people God gives me in my realms. My prayer is often “Send the people you want me to share my haven or words with and help me to lean on God when they are ready and able to go. Show me the people you want me to send books to or share with - as it’s something I can do.” 

These limitations can sometimes be absolutely awful. There’s so much I do want to do. I am human after all. There is so much I grapple with. I want to be at a weight I enjoy. I want to be able to do all the things. I want to be able to work out heavily and have the energy to go on long walks because they are beautiful. There are so many things I want to do that I can’t. I dislike explaining it to a lot of people or new friends and I just try to get around it to seem as normal as possible for the most part. Unless they actually read my long blogs - ha! But the longer they spend with me, the more they will know that something is not quite normal. (Ha this doesn’t even count the Autism factor or my other differences!) 

One aspect of life I tend to get right often, is the love of the Creator. I know without a doubt how very loved I am by the One Whom Is because of my limitations- which cuts through the bullshit of life and goes straight to the spiritual heart. I know I am that bleeding woman in the Bible. And I know that the hem of His garment is enough. Even if it doesn’t translate to full healing physically - it does translate to full healing spiritually often. I know where my meaning lies, even if I get it mixed up often. It’s easier for me to live in the Kingdom Upside Down because of these limitations and that is something… I suppose. Once again, it’s BOTH/AND.

Do I want to thrive not just survive? Absolutely! Is it my reality? No, although sometimes Grace gives me seasons or moments of thriving. That taste is bittersweet. But that’s ok, because stories of survival can be inspiring. I know that the person who is more disabled than I - bedridden and incoherent - is still incredibly precious to God and life. As long as they are still breathing they are WORTHY to exist. Their survival means something on this plain of existence. That humbles me. 

Song choice: This song is a song from the nineties (laughable so with its beats;) but I love the lyrics. I sing them often in my upside down world. Kingdom Upside Down - Morgan Cryer : https://m.youtube.com/watch?v=RNwtwMUMGVM 

Also Dance the Night Away from Barbie seems appropriate: https://m.youtube.com/watch?v=dAwLMS8fgoA

(click on photo to see the words.)

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

Natural Health Brings Dignity Back to Women’s Healthcare.

(I'm using pictures from this Halloween to illustrate this post as I feel it oddly fits.)

"You could never know what it's like. Your blood like winter freezes just like ice, And there's a cold lonely light that shines from you, You'll wind up like the wreck you hide behind that mask you use."- Bernie Taupin and Elton John lyrics.

I wish that PCOS-A New Diagnosis sounded as cool as Star Wars- A New Hope. Sadly my title does not beg the reader to ask for a prequel or sequel. But if I were to have a prequel to diagnosis, it would begin with an obsession with wanting to have another baby. To be exact it was almost a 13 year old obsession (since the birth of my last child) culminating in two years of deep depression and inability  to move onward. Finally, my husband and I decided to get started (for the fourth time in a decade) on the process which included an expensive procedure we had already saved up three times in the past for. This time was different though, because I had already crossed over the dreaded age of 34 into US standards of geriatric pregnancy. What a frightening term! (I found out later in Canada due to different populations, health care and stats, new doctors consider the age of 40 geriatric pregnancy but still! The term needs to change.) Testing my fertility and his was crucial.

I wish I could pretend that how women are treated in the medical system is all in my head. Especially when it comes to hormonal, cyclical issues, but my current blood work confirms, after years of complaints and being mostly turned down, that I was a legitimate case of needing help. Most of the time I was told I just had anxiety or that it was pointless to get tests. I was beginning to seriously doubt myself. I honestly began wondering if it truly was all made up. My resulting depression stemmed from feeling helpless, doubting my own intuition and gut, which led to me questioning if I even knew myself...an attribute I am proficient at otherwise.

I thought I had PCOS years ago but could never get a diagnosis....but for the new symptoms of high testosterone...Signs were everywhere. For instance, two years ago I finally had enough of the embarrassing hair growth on my chin and upper mouth, belly and feet. My husband thought the amount of time I spent plucking each day was ridiculous. Plus if I wanted to be hair free I also had to shave every single day. The upkeep was exhausting. So I saved and went to Electrolysis as part of my self care regime. She became a friend, someone I still look forward to seeing each month. A year into the treatment she was baffled that I was having new growth. She said it kind of reminded her of her Trans clients before the hormones evened things out. She suggested testing hormones. I told her they had tested a few basic ones and said I was fine.

My hair dresser often remarked upon my odd hair loss and thinning out which was ironic because the rest of my body hair loved to grow! But the hair I actually wanted on my head, brows and eyelashes rapidly thinned out. We thought it was just from low ferritin. Often my weight gain was blamed on lack of restraint by doctors. I was accused by a couple Dr's. that I was lying about not consuming sugar and eating mostly Paleo. Each appointment I was told to work out for 45 minutes despite insanely low iron. I was already doing thirty! It was insinuated that I must be cheating regularly or that I was lying about my treadmill time. I began to wonder why I could not get it right? What was the point? I would switch up my food choices, research different lifestyles of eating...sometimes lose 15 pounds only to gain it all back. I had a permanent 30 pounds more after my third child I generally fluctuated around.

"My voice drowned out in the thunder. But I won't cry, and I won't start to crumble whenever they try to shut me or cut me down."- Speechless lyrics Naomi Scott

The worst part was the anger. Two and a half years ago I noticed a switch in myself. Irritation and depression took turns being my primary emotions. No matter what meditation, positive thinking application, cognitive therapy technique or gratitude practice I tried, I still was regularly testy. Perhaps these practices enhanced my life and kept a steady balance to it all? Deep down I questioned, Was I becoming a monster? What was wrong with me? Maybe I was developing a new mental health issue? Who was that girl I heard snapping at the littlest annoyance?

"And did you think this fool could never win? Well look at me, I'm a-coming back again. I got a taste of love in a simple way. And if you need to know while I'm still standing, you just fade away..."- Bernie Taupin and Elton John lyrics.

There were other terrible symptoms ranging from pain, to loss to enlargement of my thyroid to thyroid nodules, to low iron to... the list goes on. I went to a few different doctors. Some did test my hormones. Five years ago my thyroid nodule was discovered which enabled some hormonal blood work. Most results were borderline or fine.

When I decided I may want to become pregnant, everything changed. While I am happy for women who need fertility support that they are treated this way, I am enraged that it took this for me to get a proper diagnosis. Shouldn't hormones be checked regularly when a woman comes in with complaints that can not be diagnosed?

"I won't be silenced. You can't keep my quiet. Won't tremble when you try it. All I know is I won't go speechless... Don't you underestimate me. Cuz you know I won't go speechless...Stay in your place better seen and not heard, well now that story is ending!...So C'mon and try to shut me and cut me down. I won't be silent."- Naomi Scott Speechless lyrics.

Also, I found out that testing blood on certain days of the cycle and times was CRUCIAL for accurate results. Most of the time the Doctors told me that would not matter. Suddenly, when it came to pregnancy it did. That was when I was flagged for high testosterone (which explained the switch in myself 2.5 years ago.) I was also flagged for low cortisol, lower thyroid, slightly lower progesterone, low ferritin again ... and the tests are still happening. How did this happen? The immediate diagnosis was PCOS. Addison's and other issues are pending confirmation.

"Don't you know I'm still standing better than I ever did? Looking like a true survivor, feeling like a little kid. I'm still standing after all this time. Picking up the pieces of my life without you on my mind."- Bernie Taupin and Elton John lyrics.

Funny enough, I also had to get a Naturopath to order the tests through a family doctor. Even when she initially consulted with me she opened with, "It is unlikely that you will have PCOS, which affect fertility as you do not present as the type, most are very heavy women who are obviously hairy and present a bit like a man, but we will test you anyways." When the results were in she remarked, "Wow, you're blood work shows the standard fluctuation in hormones for a PCOS woman. You will need at least three months treatment to get yourself in order before you can get pregnant. In pregnancy you will have to monitored and we will give you some natural progesterone which should help you retain pregnancy and the rest of the issues we can manage through supplements."

Later she confided, "Honestly, your obsession with wanting a baby may have stemmed from your body needing balance. A pregnancy if retained at this point would help you a lot. Your mind knew that. It's like women who crave chocolate who actually are magnesium deficient. As soon as their body has sufficient magnesium they are no longer craving chocolate. If we balance out your hormones you may not have a baby craving, but if you still desire to be pregnant, that may carry you through to menopause without the debilitating symptoms you are having now. That is not always the case but it can often happen if a healthy pregnancy and labour is achieved. "

If this part of the story was the riveting sequel, it would finally find me at a place where my life was given back as MINE to live. Walking out of her office, my self confidence, and my trust in my inner gut was restored. My intuition and inner knowledge of self was confirmed. My confusion cleared up. Despite having all the symptoms still I knew why and that information allowed me to make informed daily decisions. My creativity re surfaced two days after diagnosis. Long term goals were thought out more clearly. My baby obsession became a light, healthy interest. I was even able to put that decision easily on the back burner until I could see if the me, that would be brought back into myself from treatment, would even wish for a child.

Luckily because a pregnancy is still an option I am not being put on birth control pills which are the standard for treatment and often only band aid bigger issues and make things worse further down the road. My naturopath put me on natural androgen blockers as well as other supports. I checked with the one other Dr. I trust to give an opinion on the matter. He read the ingredients and said that some of them were given to men when they have enlarged prostates due to over aggressive testosterone and it should do the trick at lowering mine. Plus, the other ingredients naturally worked for balancing out other hormones. When the metabolic process is off in a body, many disruptions happen at a molecular level to cause chaos. My body can not regulate with a simple diet and positive thinking. Yes, both these attributes are large factors in chronic illness, but they are not the only way to manage.

"Now that story is ending..."- Naomi Scott Speechless

My Naturopathic Doctor also went over backlogged records of my blood-work. She would occasionally point out one and say, “Oh that November you must have felt like you were dying. That particular concoction of hormones make women feel they are slowly dying from the inside. Most doctors say it’s low normal for thyroid but it’s actually a slow functioning thyroid that when combined with other body systems creates a certain set of issues. It must have been heartbreaking to be told you were fine when you felt that way.” Or “This pattern here explains your constant low ferritin. Often that can happen with certain women in PCOS. Each manifestation is different but with heavy cycles and also your co diagnosis of Lyme and Celiac which often also go together- fits the picture.” And “ You must feel you are collecting diagnosis but don’t be alarmed as they all can often fit together. Unfortunately, after years of no support , the body can spiral into other conditions. Even though you have chronic/lifetime diagnosis we can actually get most symptoms on track and prevent other things you would be at risk for with PCOS like high blood pressure, certain cancers etc. by proper treatment.”

Last Autumn, I actually paid to take an in depth course on PCOS. The one Dr. that was actually on my team told me to look into it. Unfortunately, my blood work was done on the wrong day and did not show anything. It is crucial to be done around 8 am, preferably after fasting on days 18-21 of the cycle. Also to have fasting glucose done to rule out other conditions. *(There ARE different days for bloodwork. See Below)

"Once I never could hope to win. You starting down the road leaving me again. The threats you made were meant to cut me down. And if our love was just a circus you'd be a clown by now."- Bernie Taupin and Elton John lyrics

I was told time and time again that I did not "present" as a "typical PCOS" patient. Multiple Doctors told me I wouldn't have it because I was "too young," "too pretty," "too feminine," "not hairy enough" or "not overweight enough." All these statements sound flattering but they were condescending judgements. I did not look hairy because I had electrolysis and shaved every day! I present younger despite wrinkles and aging due to being an Aspie/ Autistic. I looked passable because I know how to put on make up and wear falsies. I seem feminine because my voice is higher pitched anyway so when it lowered, due to testosterone, it didn't seem significant. I am thirty pounds over what I should be for what I eat, my exercise and my lifestyle. It is perpetually aggravating to be SO restricted and not lose or have anything to show for it!

Honestly, I have let myself go to eat whatever the last month. In the last two weeks I have become slightly pleasantly plump as my daughter giggled when I asked her if I gained. Ha I trust my children to tell me the truth . For the first time I have allowed myself to be. It bothers me sometimes but in general, I feel awesome so that has to count for something! I have had ENOUGH of the assumptions of what it means to be a woman. I have had enough of the assumptions of what a capable, strong, beautiful woman should be like. Or what a sick woman should look like. It goes both ways. I will not conform to that standard. I never fit and never will. But just because I like to take care of myself and am aware of how I present, does NOT mean that my treatment should be ignored or I should be disregarded.

"Here comes a wave meant to wash me away, a tide that is taking me under. Swallowed with sand left with nothing to say, my voice drowned out in the thunder...written in stone, every rule, every word, centuries old and unbending. Stay in your place better seen and not heard but now that story is unending. Try to lock me in this cage - I won't just lay me down and die. I'll take these broken wings and watch me burn across the sky."- Naomi Scott Speechless lyrics.

If I could make any point with this post- it is for women to keep pushing, trust their gut, and it's sad to say, but if you are of the age when you can have a baby, and can not be taken seriously any other way, maybe consider it and go in for fertility issues to be checked. It sucks that it may come down to that for some women. Women are left in Menopause to deal with issues, when many of the symptoms could be supported. Just because it is natural process does not mean it does nor require different supplements, supports and strategies to re balance the body! Women's health care still has a LONG way to go. The injustices of how women are treated today (SEE THIS POST) should not still be happening in this century. Don't live unspoken! Let your echo never be silenced!

"I can't be broken. NO I won't live unspoken."- Naomi Scott Speechless lyrics.

PCOS is not a fun diagnosis. It's not curable in a standard way, though it can go into remission. It does higher the risks for some scary conditions later down the road. Yet, I’m happy with the diagnosis for one simple reason- I can actually trust my own process. My symptoms can be explained even if the explanation sucks sometimes. I can suffer the how better knowing the why. This is a game changer. The missing puzzle piece I have consciously and subconsciously been chasing for years is finally on the board with the bloodwork confirming high testosterone. It’s a new hopeful beginning.

Two weeks into treatment and my family expressed that I was a way nicer person. If I forget a pill, I feel it that day. Spearmint tea twice a day also helps lower testosterone and balance out androgen's. I feel back in a semi state of control over myself which induces calm. My creativity came back after a few days of diagnosis. Suddenly my brain didn't have to fight so hard to have me hear that there was a problem! My life was already accidentally magical, and I was grateful for it everyday, but often I still had a layer of unexplained irritation covering it. After diagnosis, my symptoms did not change, but I finally was able to explain my system to itself.

"Watch me burn across the sky!"- Naomi Scott Speechless.

I don't know what the future holds. Maybe I will also have Addison's, a concern for low cortisol like mine, or any other myriad condition that is caused by hormone disruption. Maybe my ultrasound will pick up ANOTHER underlying cause? Maybe the pills will only work for a little bit. In a few years I could switch back to Estrogen or Progesterone dominance, as it is speculated that is what happened nearly a decade ago. That can happen in PCOS. The body is a strange and complex entity. Life is complicated with each new diagnosis, but it can also be simplified...especially if the person was already suffering without knowing why. All I know is that I will not go speechless on these issues. These broken wings enable me to burn across the sky. I won't be silent about the struggles specific to women and the discrimination and injustice that can happen.

"You know I'm still standing better than I ever did. Looking like a true survivor, feeling like a little kid. And I'm still standing after all this time. Picking up the pieces of my life without you on my mind I'm still standing (Yeah yeah yeah). I'm still standing."- Bernie Taupin and Elton John lyrics.

I share this story for women everywhere to not doubt their bodies. Keep fighting. It took me more than ten years to be fully heard. Two of which I was asking every few months for answers! Depression is caused often by not knowing our bodies or why we are the way we are. Not everything should be blamed on anxiety or typical women's bodies....like we are just supposed to be messed up because we have a different hormonal concoction! We shouldn't just accept birth control as the only treatment. We shouldn't have to deal with insane periods or menopausal issues...just as we should not have to put up with sub standard care in labour and delivery. Most of our Women's health issues require revision. Find alternatives. It is worth it to pay for a Naturopath if you can save up to afford it. It took me a few different tries to find the right one for me, but it was worth the search. Don't give up on yourself.

I also ask that men, if they are reading this, to revise their opinions on Women's bodies. Especially men in the medical world. The women in your world will thank you for understanding the complex ways in which hormones can affect whom they are and what they do.

"Let the storm in. I can not be broken. No I won't live unspoken. Cuz I know I that I won't go speechless." Naomi Scott Speechless lyrics.

My life is back. I looked back over the last few years and issues that baffled me now make sense. I am finally free of self doubt. I may struggle with general depression on the days that my symptoms win, but the depression that stemmed from doubting self was debilitating. I am so relieved that is gone from my life for now.

"I won't be silenced. Though you want to see me tremble when you try it. All I know is I won't go speechless. No I won't go speechless. Cuz I breathe when they try to suffocate me. Don't you underestimate me. Cuz I know that I won't go speechless...I won't be silent. Don't try to keep me quiet."- Naomi Scott Speechless Lyrics.

"Don't you know that I'm still standing better than I ever did? Looking like a true survivor, feeling like a little kid. And I'm still standing after all this time. Picking up the pieces of my life without you on my mind..."- Bernie Taupin and Elton John lyrics

Post Note: Days of the cycle vary for blood work. Overall blood work for hormones are day 18-21. (Practitioners differ on this- it worked for me but some say different days.) However, if Estradiol is the main concern day 3 after a woman's flow is the best. If DHEA is a concern (especially in combination with previous high Testosterone results) than a week before or a week after the first period day is best. Cortisol is best around 8 AM and 4:30 PM on the SAME day. It is also helpful to have ACTH done this way. Research your optimal days and even if it doesn't say it matters, try your best to get tested on the optimal days for optimal results.

This diagnosis was not 'new to me' at all but the confirmation of my concoction of hormones WAS. That was a big deal... I'm still being tested with more blood work and ultrasound ect.

Song Choices: Speechless by Naomi Scott. (Aladdin) And  Taron Egerton 's version of Elton John's  I'm Still Standing

Women's Equalization? Are we the Same or is it Better to be "Different but NOT Less?" Women's Health "Equalization"/ Autonomy and Respect.

"Oh you are a Feminist." I have heard that statement more times than I can count, and it is often accompanied by a tone of derision, from mostly men, yet on the flip side of the coin from strong, fellow women I have heard condescendingly, "You are obviously not enough of a Feminist." Which one am I?

I am what I am, a product of my body, hormones, genetic make up, choices, environment and so much more...

Recently, we had a study in our home and the topic of Women's Rights came up. There was back and forth between the males of the group and the two only females of the group which included myself. I find I am often the female minority in Philosophy groups- a point I am still curious of. Is it religious demographic or is it a larger question of female and male? I don't know. Anyway, at one point in the conversation I became fed up and interrupted with, "It's like what we advocate for in Autistic communities....Autism is DIFFERENT but NOT Less. As Autistics we do NOT want the same opportunities as "normal" people. If you put us in an extreme sensory situation we will not measure up. If we are required to give the proper eye contact and the same socially acceptable behaviour as our peers, we will probably not be given the job. What we need instead is greater understanding that although we may have differences and weaknesses in some areas, we will have strengths equal to or surpassing in others. The same should be said for women in general. While it is true that some women can be stronger than men, in general this is not usually the case. But just because we are not physically stronger, does not meant that we should not have the same freedom to try certain jobs ect.

"Different and not less" is about respect for the individual. It's about autonomy and the ability to choose the life that works for us. It is about the ability to bring our certain skill sets and be acknowledged for them or given the time and patience for us to prove our potential in outside the box ways. It's about defying societal expectations instead of conforming to them, but it's also about trying, in our own way to achieve societal contributions and acceptance. It's that fine line between the Yin and the Yang. And it's more work than just general social acceptance and pushing everyone to achieve the same goals.

In Women's Issues, I am getting frustrated because even though we have made substantial steps toward autonomy, the suppression of our clear differences is being affected during these marches to freedom. While there are exceptions to all things and ways of Being, in general, there ARE biological, physical, chemical, psychological, and physiological, differences between the male and female body. These should be celebrated instead of ignored. Also, they are an important part of health and functioning.

In our day and age we still do not talk about the complications of prolonged menstruation and women's health. Women are starting periods as early as 8 years of age and sometimes bleeding into their fifties. This time of menstruating is longer than anytime in history- especially without the multiple breaks of pregnancy that were part of life before this century (which obviously came with other serious health issues.) While the pill has been toted as the "miracle pill", many women are finding after years of being on BC their health problems come back worse and complications arise from long term use, even if they didn't get the horrid side effects that can accompany birth control. Long term effects like increased blood clots, cancer, early death, infertility, hormone imbalanced conditions, and autoimmune diseases ect. Women's health is under researched and not discussed often enough. Even saying the word "period" is often met uncomfortably from both men and women! Yet, the jokes of male anatomy are often met with snickers from all sides at the very least. Birth and menstruation are essential to human life, both male and female and should be an accepted part of conversation in all circles. Until we get to a point where the women's body is treated as more complex in medical situations and with the respect we deserve, women have a long way to go in "equality." Equality does not mean that our bodies should be given the same amount of time as a male patient's doctors appointment, it means we should be given a longer slot of time to be equal in treatment. Fair is not fair. Equality should mean that menstruation and it's potential health effects should be as researched as male pattern baldness even though the money is not in it.

An example of un-equal treatment would be how women are treated when they have heavy bleeding but refuse Hysterectomy, Ablations or the Pill. See THIS ARTICLE. Our system is Male centric. The female doctors that have dealt with my issues often do not have the same issues I do...I honestly believe most female doctors are in the percentage of women who have experienced light, normal bleeding because they probably wouldn't have had the time or energy to get to that position if they had heavy, iron depleted, menstruation month after month. It IS limiting. One in 5 women experience heavy bleeding or complications from their cycles. It is a pretty hopeless situation for those who do not wish to compromise their body with the effects from birth control or have an Ablation and Hysterectomy.

Personally, I know this to be true because I have also been treated with derision, condemnation and rudeness in multiple medical situations because I refused to go on birth control or to have an ablation. I have been heavily anemic for most of my life and have spent the last decade with a Ferritin ranging from 2-9 ( and never higher than 9.) I have been on birth control once and it made my issues worse and my bleeding lasted for months. After extensive reading, many anecdotal stories and the limited research on the long term effects on Women's health, I will never go back on it. That said, I do believe it has a place in society and that for a select few it is the best choice. The doctors are not kind when they realize you will not easily be fixed. It is rare to find a Doctor who advocates for root cause or takes the long term, long hours of digging and care to diagnose the complexity of women's health issues. I have also found women doctors to be especially unkind about this because if the pill worked for them, why wouldn't it work for me? Some of these same women march in Women's Rights rallies which I find slightly ironic. I guess I find acting upon beliefs in the day to day more substantial, although there is a place for marches too, but if we are going to march, we should know the full scope of women's experiences and engage in understanding.

THIS ARTICLE sites, "Recently, Hormones Matter has begun to explore the legalities of the medical informed consent, here and here. With all the adverse effects associated with endometrial ablation, especially the need for hysterectomy later, one must question whether women are informed about those risks. As I have found when investigating this topic, there are few long term studies on endometrial ablation. Many of the articles cited for this post come from paywalled journals that are not readily available to either the patients or the physicians – the costs are prohibitive for both. So it is not clear whether the physicians performing these procedures are aware of the long-term risks associated with ablation. And as one physician suggests, neither the pathologists nor radiologists responsible for diagnosing post ablation pathology are trained to recognize these complications. Without data or access to data and without training, one wonders whether it is even possible to have informed consent for a procedure like ablation." 

Why is it, that in 2019, we still do not have involved informed consent on Women's health procedures? Why is this so under researched? Why are Doctors so prone to slap a "hypochondriac" label or "Anxiety" label on women who are suffering with hormonal issues or bleeding issues that are legitimate and need new cures? Thus far, there are no long term cures for Endometriosis nor for PCOS or Hypothyroidism or many issues that mostly belong to women. We are in an age of scientific discovery and so called "rights" yet we have not even made huge strides in these areas. Or what about the scarily high rates of death and longe term affects in maternal health care? Yes, we have made large strides, and yet most causes of mortality or morbidity are from Doctors mistakes in the Health care system. See THIS, THIS, THIS, THIS and THIS article.

I hear men talk about abortion and the injustice of it and yet I do not hear them talk about the injustice of the rising mortality rate in pregnant women or infant death. Why is that? Every day approximately 830 women die of PREVENTABLE causes of death in childbirth. Until you can talk to me about that issue, I will not listen to arguments of equalization between males and females. Until you can discuss the 4.8 million (as of 2016) females and children being sold into the sex trades and the whopping 85% of women in domestic abuse situations as opposed (to the also sad statistic) of 15% men, you can not talk to me about abortions. 

In my personal birth experiences I had a doula twice to advocate for my rights, and in these situations my rights were still ignored in some regards. My body wasn't treated as my own in my first birth and I suffered severe post partum depression for years after, along with heavy bleeding for 12 weeks and health issues. Nurses were often worse then the doctors. It is a travesty that women are cold to other women and treat these tender issues between life and death as trivial. While birth is an everyday part of life, it is in no way trivial.

Having female genitalia and hormones IS different from having male genitalia and hormones. Equalization would not be fair. We NEED to be treated differently. But that does not mean that we should not have the same amount of opportunities that men have enjoyed in the past. We should have access to our own decisions, and the ability to make a good life, whatever that entails, with personal power.

With my anemia and blood loss every month, I could never hold down a regular job. Other women in my experiences have either understood that because they have been there too, or are generally pretty harsh about it. Are we not all on the same side? Should we not be fighting FOR each other instead of WITH each other? If I choose to stay home and have my husband work, and he is happy to do so, should that not be acceptable? (*If my daughter wants to work and is capable of doing so and her partner wishes to stay home, that should also be a right celebrated.) Am I not still working and still legitimate in the social order of things? If my husband protects me when I am vulnerable and bleeding and can barely get out of bed does that make me weaker or incapable of making my own decisions? Does it mean that he "rules" over me? I am proud that my guy feels compelled to protect me when I am physically vulnerable. FYI that physicality does not mean I am weaker, on the contrary I'd argue it makes me stronger in some aspects to deal with what I do and still BE, but it does mean he has different strengths I rely on during different parts of the month. And I have strengths and protect him in other ways. I want him to open the doors for me. I want to lean on him when I can barely make it to the next room because I am so depleted of oxygen and iron. I want him to advocate for me and stick up for me when the male or female doctors are not listening to me but they will listen to him. It doesn't make up for the injustice of the situation but I'm grateful he is around. And what of the women who do not have a stronger partner or advocate for them (be it male or female?)

When I am pregnant and I choose not to go to war, am I less than a man? If a woman wants to go to war for her country she should. But she is generally in the minority and I think that is ok. If we actually look at the health stats of women in general, we see why that is. Millions of women suffer from minor to major hormone and cyclical or pregnancy/birth related life complications. We ARE at a disadvantage this way. But we also BIRTH life and create in ways that men can't. Men are not less because they do not do this, and we are not less because we can.

Because my health issues are more complex in this female body I am housed in, am I less legitimate? If I am suffering and find myself at the mercy of the medical system to try to find the root cause is it just female hysteria? History says we have made progress, and certainly there have been baby steps, but personal experience along with a majority of anecdotal evidence, has proven we have a long way to go.

I do not want to be equal to a man in body. That's not how I was made. I know a few women who could possibly be equal in the hormonal concoction or perhaps in strength they surpass many men, but in general it is the exception and not the rule, so why are we advocating for this? It will do us a huge disservice. Many middle aged women are stuck between wishing to come off strong to maintain their jobs but also dealing with the hormonal affects of cycles and aging. Before this time men have been the majority in the work place and women have proudly and rightfully found their places, but now we have to ask ourselves, how do we make work places and society more women centric too? Not just females fitting into the male prototype of being able to be constant, instead of a woman who is cyclical and should be proud of her ties to the moon, nature and nurturing? Yes some women are not and that is okay too but for the majority who are - where is our cyclical society? Where are the peer reviewed studies on our long term health affects and hormones? Where are the damaging statistics on many of the archaic procedures and medicines still harming us? Where are the work schedules that allow for our cyclical flexibility?

Anytime this conversation comes up, a man usually brings up the subject of the "de- masculinity" of boys in our culture. While I do believe there are some concerns with the pendulum swinging too far the other way, due to our recent patriarchal past and rightful reactions to this, I still feel the same rule applies to men. I want my boys to be different not less. They can have whatever expression of their lives that they chose. And I wish for them to respect the women in their lives and be aware of cycles, changes and differing health concerns. I also want the women in their lives to respect their different struggles, strengths, health and weaknesses. I am not a man and can not speak for one. However I have and CAN advocate for my husband and boys in many situations. That is what I wish for them to also do for me. We are all human and in that we are equal. Yet, we all have our differences and in this time in history, it is important that we do not ignore these facts, while making crucial steps onward into growth and hopeful change.

Song Choice: Wonder Woman- Kacey Musgraves....I chose this out of a myriad of songs because of this lyric "Don't you know I'm only human? And if I let you down I don't mean to. All I need is a place to land, I don't need a super man to win my lovin' cuz baby I ain't wonder woman." And yes, that is it. WE are the human scope of brilliant diversity...yet we also have distinct challenges in our genetic make up that need to be acknowledged in places of health and the work place. It's complex, it's tricky and it involves the rights of many, but with a case by case approach and societal expressions of different NOT less, it CAN be accomplished. We all can rise to complex life challenges and come out celebrated. ( On a side note Congrats to Kacey for winning the Grammy's Album of the year as it is probably the record I have listened to over and over the most since I bought it the day it came out...YAY!)

Post Edit: I AM grateful for the tests, procedures and birth control we DO have, however in this time of history I think it is reasonable to push for advancements. The realm of Women's Speciality health is still fairly new and we have further to go. Birth Control pills gave us freedom and many countries could still benefit from remedying the lack, however, the side effects and the long term effects need to be more researched and I am SURE there are better alternatives yet to come! For those of us who do not have those options due to family history of blood clots or excessive bleeding or whatever, there should already be ongoing progress into alternatives (Depro Provera alone needs an entire post on it's own about it's dangers and research ect....) Another entire post could be on the comfortability and support during scary tests for women. We could also do better in this department even if it means a few more health care dollars thrown into cheery paint, waiting room art and kinder technicians...I digress because I could go on and on....:) 

30 Of Some of My Best Decisions in 30 Plus years. My life hacks.

Preface: Due to a few people asking I am putting this post back up for awhile. These are MY considered best decisions. This list is PERSONAL. I don't believe it would be the same for anyone else nor should be. Even if I say it was the best decision for me, I am NOT saying it may be the best decision for someone else. Nor judge their lives as lacking. These are simply the most fulfilling or rewarding 30 choices in 30 plus years that came into my mind. They are also not in any particular order of importance but these were all game changers for a better lived life in MY Story. This is a personal post so skip it unless you are interested to see what choices made someone else feel that their life was well lived;

I’ve been asked, “How do you gage the happiness of your life and what breeds feelings of contentment?” I found that a loaded question that seemed a nicer version of a few jealous remarks about how I’m “ privileged” to be a stay at home mom and “privileged” to have such a man who loves me and can provide that option and that I’m “privileged” to have such easy children. 

I’m used to hearing variations of that remark. I step back before I react. Honestly, sometimes I want to lash out and state, “Live my hard choices before you judge my circumstances. Choose a partner at 18 and have all your relationships except for a few loyal ones who see the deeper side, balk, dismiss, mock and disrespect your choice. Birth 3 children and two miscarriages during the hardest phase of your life and deal with their very tough disabilities with continual invested time while having hormonal post partum depression.  Find yourself crying outside the door while your four year old screams and screams and screams for hours and hours on a daily basis. Have the tough conversations, the constant time given to the other  dyspraxic child who takes three hours to eat any meal until the age of ten, can’t ride a bike until age 13, and requires constant supervision under age 13 to be safe. Or the other child whom has such crippling anxiety they can’t leave the house without you mostly until age fourteen without massive meltdowns later. Invest, seek constant guidance, give up your life and your sleep for at least a decade. Be your best self despite lacking the patience for most of this - know what life is really about- and when they suddenly turn older  and have begun to flourish to the point that rarely anyone believes they have disabilities ( though they are life long but now instead of being defined solely by them - the children thrive being themselves) see the opposite reaction of people wishing they had what you had. Envying your very close relationship with children who include you even in their other friendships because they enjoy spending time with you that much. Pour tears and constant communication into a marriage that sometimes is one sided or sometimes is barely hanging by a thread but stick in there through the depression of both parties, the struggle, the years of hardship. Live under the poverty line with a one wage for  years and thrive due to very hard choices. Sacrifice so much and turn away from the alter of productivity and “establishment” and cultural norms of success and watch as people brand you as lazy, not talented, admirable, indifferent, odd, difficult, or not ambitious or talented enough or in the best circumstance to “avoid” a REAL job. Hear them constantly state they could never possibly have what you have while you know that most actually could with the hard choices… while cultivating support later carefully and hard won. At the same time those people will also feel a stab of jealousy when you talk or are out with your close family or showing pictures or videos or blog posts - and won’t know where the jealousy is from so they attack or isolate themselves from you. Try stepping off the cultural norms of society while still trying to build community and serving it in ways many people will not recognize or acknowledge or even respect. ( The ones that do are gold- value them and keep them close!) Watch as extended family blow up at you in the early years for the uncomfortable choices. Some of which may have been mistakes but many that brought you to this moment today and let them assume things about you that aren’t true without trying to prove otherwise. Allow people to believe your silence is indifference instead of great self control. Marry young and watch the derision of those who believe you are lower class and “uneducated” due to your choice. Watch as people treat you as “less then” because you stay home instead of going after reputation and making your mark on society ( even though you know the best mark on society you can make is a well thought out life, being a loyal wife and raising good children.) Watch as any person in the school system feels either judged or superior because your home schooling your children and worse - unschooling them! As they brag about the latest grade or college or job or question your children’s abilities - stay silent and realize you did what you did for a different life not marked by degrees or prestige or advancement but one marked by hard work, community and rest, choices and family life and most of all love and gratitude even at the “lower level” jobs. Be branded as blue collar family ( which proudly you are) but also as uninformed and ignorant ( which you also are sometimes… but also knowing this isn’t all truth.) Take the hard road and make faith, family and life your own. Then come back to me and tell me that this is all just luck of the draw!” 

Obviously I have yet to state out loud ( other than in this space) that pent up diatribe…it’s considerably lacking in grace or kindness. I try to step back and remind myself that the person in front of me is not my collective judges but a single human being. Maybe they are truly wanting to know how to find contentment in an over twenty year marriage and family life… and honestly want to model some of what I have I will give them some of my best life decisions. 

The problem is though that my tips alone are explosive topics in today’s world. By even stating them I’m seen as counter cultural, conservative, restrictive, and the list goes on. But I wouldn’t be where I am today without the guidance of other woman and men who sacrificed their time (and possibly reputation) by showing me their tough choices and sharing their life stories. So generally I share cautiously in baby steps gaging the context of the person in front of me and how to speak their language. Which is impossible to do in a blog post with multiple readers so I’m going with honest steams of consciousness here. 

It’s honestly impossible to show all the nuances of the tips I have - it would take a book or three. I know there are exceptions. I know I am privileged in the sense that I am living in a free country and was born into lower middle class life but with massive family and friend support, and a protective environment ( for the most part.) Yet, each of us, with the exception of the truly impoverished, have choices we can make to improve our lives. Even in the mountain ghettos of Nicaragua, I witnessed autonomy and choice of people carving out the best life they could in the worst of circumstances. Some of them were more content than the people with “better” circumstances back home. I would not call that privilege. I’d call that seeing reality for what it is but striving to make the best of what we’ve got and improving what can be improved and accepting what can’t. It’s letting go of comparison and asking, “are there any choices I have that can make this better? Are the choices reasonable? Are they worth the cost they will take ? ( usually they are but mostly people aren’t willing to stick out the tough) Is this about trying to be the next class up or day dreaming about wealth, reputation, respect from others to put our mark on the world? Or is this about finding bits of community, family love, goodness and faith and peace despite circumstances and living our best life within that life’s context? Exceptions to everything not withstanding. 

1.) Marrying young. I am all for careers, choice and autonomy, but life is short. If a person dreams of a committed love, the stats show that the good compatibility MATCHES for one's personality type, are usually (exceptions to everything obviously) all taken by thirty (or if they aren't they come with additional children, divorces or tragedies which is fine if you are ready for that.) I encourage my children to seriously think about making room in their life for love in their late teens and early twenties while choosing wisely... ONLY if they actually dream of having a monogamous, committed love. There are many beautiful ways to live a life. I find marriage immensely satisfying except when it's not...but mostly, it was THE best decision of my life. I was the girl who spent hours in my room dreaming of a love story. I was obsessed with musicals, romances and my first kiss. My single friends have a life I value and see beauty in. FOR MYSELF, as this is MY birthday post about MY best decisions, I have ALWAYS wanted an epic love story. It's what I dreamed of, hoped for and obsessed about. Marrying young satisfied my need for partnership early and allowed for the rest of my life to settle in to this and enjoy other facets of being. It has NOT been all rainbows and musicals. I have written numerous posts about our struggles, but it is still worth it, and if I happen to live a long life, I am determined that it is with the man who chose me and I chose him. There is something valuable and beautiful about our committed partnership that I deeply cherish. I would rather not have to work through all the milestones with a new person ( because relationships DO have stages that eventually have to be worked through) and I value the beauty that is a result of communication, humour, dedication, loyalty and love in a relationship even if there ARE downsides sometimes.

2.) Reading a variety of books regularly. Philosophy and Teen Fantasy and all in between.

3.) Having children young. I know, I sound like a conservative, traditional woman who gives all of her rights away...but if you knew me, you would understand that this seems like a counter self choice. I never desired children. I definitely suffered through the early years with PPD. BUT the unexpected love, hard lessons, legacy, and the joy received from this choice has brought so much beauty in my early thirties. At their pre teen and teen ages we have our hardships, but I LOVE having these years of theirs while I am in my younger thirties. I love how they often say to me, "You're SUCH a teen mom." or "Look at her? Isn't she beautiful and so so cute?" and I scrunch up my face or stick out my tongue at them:) In many ways I feel older than my peers without children due to the issues we deal with, but in other ways with my children, I feel younger. Obviously, I can not imagine this choice any other way. I see such beauty in my childless peers or families - but FOR MYSELF- I consider having three children the most fulfilling decision of my life, besides marriage. As a balanced feminist I am not ashamed to admit this. However, being a parent is a serious consideration and lifetime commitment. There are some amazing people who will never have offspring because of choice or because the choice is taken from them (I am deeply sorry for this and hope there are other options to seek what is wanted)- there are many beautiful ways to live a life...this happened to be mine.

4.) Choosing seven different pre marital counsellors and following through with our preparation for a young marriage because everyone warned us we would fail. Being zealous teens, we wished to prove them wrong so we prepared. It probably seemed like rebellious overkill, but it DID give us a head start because we were fully on the same page to begin with. We enjoyed full, open and heartfelt communication when we got hitched which still stands today.

5.) Unschooling. I have written various blogs on this. It has been freedom in so many senses.

6.) Learning how to clean and manage the home in a way I could handle. A clean home does make living life feel easier...but this was a long road for me. I also learned how to delegate, what to leave, and how to keep it clean ish without a lot of time involved so that my time could be freed up for more enjoyable tasks like decorating the home:) It also helps to have children now who are part of the chore load. Adding in a treadmill for the home, when I was allowed to start light exercise again, has been immense in improving my life.

7.) Having my husband take over all the cooking. Yup. This is definitely where I am privileged. He can cook nutritious, delicious meals and more importantly, he does this safely. With Dyspraxia and my form of Autism struggles cooking was like MATH to me ( I have Dyscalculia so Math is almost impossible. Even with a calculator I often have mistakes with my reversals of numbers like 65 being 56 ect.) After a few accidental poisoning issues, burns, cuts and accidents that could have been far worse...plus me crying in the kitchen with no idea what to do...we decided that he would take over all meals. I took over the budget, taxes (I realize that sounds strangely like Math, but in the end after some initial help and going over the budget at least seven times each session to make sure the numbers line up, I am good at delegating what goes where and how to be thrifty), organization of home, facilitating learning opportunities, appointments, fresh mentalities, and most of the chores with the kids. We also cut his work hours by an hour and a half each day to make up for that time he would come home to cook. It seemed unfair for him to work all hours, with me at home, and then cook. It works for us and we finally eat well. He doesn't have to do any clean up nor chores in the home other than carpentry maintenance and watering of plants ( unless he wishes too.)

8.) Changing our married last name, as a family, after more than a decade together. CLICK.

9.) Saying NO to a few medical procedures that were pressured but I ended up being fine without them.

10.) Researching everything that pertains to important choices. Besides books, I will forever also love the Internet for giving me this opportunity.

11.) Stretching myself by going hesitantly to see a Naturopath. My life changed for the better even though I thought it was weird and surreal. I was HUGELY skeptical and still am for some things. Yet, seeing the result in myself made the risk worth it.

12.) Learning about Personality types and Cognitive functions. This was a life changer. I am more gracious because I generally guess the basis of each person's personality (even if they test slightly off because of our years steeped in it- we understand the nuances) and can then understand their motivations even if I disagree. This helps me have peace with most people even if I have no desire for them to be personally in my life. Click on the INFJ link at the bottom of this post for more.

13.) Blood work of all types to rule out conditions and find others.

14.) Getting a mortgage young at a deal. Waiting to turn the starter home into a home of our dreams slowly as we began to be more stabilized. Being rooted was important to us and ended up paying off in many ways. We looked into moving multiple times. We had a few years of incredible dissatisfaction with where we lived. But then we realized, it's not WHERE, so much as it is HOW, one lives. Where matters to some degree, but some facets can be manipulated. We went a bit "off grid" so to speak and dropped out of our communities. At first this was hard, but then we made new ones that felt safer for the concept of home. We challenge ourselves still but we created a home that protected instead of infringed. We chose to see our home as both solitary and elusive. We see home as a concept we create that can be changed in our mind's eye together. Yet, we also see it as solid ( see point 30.) We realized we are NOT our chosen place of living, though it can shape us, but we are what we pursue in thought and heart. We view our home as the tiny world we created on our plot of land, along with in our vehicle when we drive to our favourite places, and within this a few pockets of home along the way. We are grateful that the place we live in, enables us to do this and are not ignorant to the part it plays, but we have also disassociated our place of Being as DEFINING us. If we were frustrated at the lack of trees? We planted numerous ones. If we felt it was too hypocritical? We found people who were not. If we felt a lack of beauty? We made beauty inside and enjoyed it in videos, travels or in the imagination. We searched out inspiration when we felt there was little. In the end, we realized our mindset matters as much as our place. Both are important. Then we chose to stay because we knew we do best when rooted. Some do best travelling and exploring. Find what is the truest to you for satisfaction.

15.) Discouraging my husband in a pursuit of a degree I knew he would not use fully and we really couldn't afford. Listening to my husband when he wished to do cheaper Trades school in conjunction with the job he had already in construction to become a Carpenter even if it was not his first choice of career, nor does it fully suit his philosophical personality. It became an important aspect of our life and fulfilled our need for renos, self employment and freedom over our work hours.

16.) Self Employment.

17.) Pursuing Neurological diagnosis for varied members of the family. This is when I met my key therapist who has been with me for almost thirteen years. He has changed our families life for the better in so many ways that I owe him a great debt. He has counselled my children and my husband at varied times and then found them other resources to aid. I was scared to sit in my first therapy session and I thought therapy for anxiety and not marriage, was only for "THOSE" people. How wrong I was! The first three years were hard, personal work of changing so many habits and thought patterns, but then when the breakthroughs hit, it became more about support.

18.) Opening up my mind to understanding varied neurological differences. Educating myself with material BY those who had the conditions instead of the "professionals" who studied them. Reading blogs like Musings of an Aspie CLICK or Everyday Asperger's CLICK, changed my life forever. I felt validated in my own existence while learning more to navigate the world at large.

19.) Changing our lifestyle and taking out gluten and processed sugar. Health is so important when feasible ( I have several chronic conditions so know it’s often not feasible.) I don't often meet dissatisfied people who have a spiritual life, eat well, exercise and are generally a balanced sort of healthy but this is dependent on so many factors to which we cannot judge others… tho … Most people don't regret being fit ( if possible- as we know, I understand chronic illness restrictions) but in GENERAL, eating well has improved our lives. We have less sickness and flu bugs than most of our friends ( besides the chronic illness factor). Some of this is due to intentionally doing LESS out in the world, hermit status at times ect but a lot of it is due to the healthy spices, honey, good bacteria, fermented foods, greek yugort and delicious home baked treats we consume. This depends though on our budget and sometimes it’s not fully feasible. 

20.) Therapy. Therapy pre problems, during issues, and post problems. Therapy for marriage, therapy for the children, therapy for neurological differences, therapy for grief, therapy for PPD and PTSD...it is hugely beneficial to speak to a neutral party. Also to find ways to be the change you wish to see in the world by realizing you can only work on YOU. In all problems, therapy provided a way for me to grow, change or take a more balanced stance while still healing myself as well. ( I also strongly believe bad therapy with a therapist who has agendas is going to make life worse- tread carefully…)

21.) Going to Kindermusik because I met my best friend there when her daughter was in it. I usually hate and avoid all sorts of social events like that, but that choice changed my life. My best friend is the anchor to my soul. She accepts me as I am, has long conversations with me about our shared interests (it helps she is an INTJ and I am an INFJ thus we both value deep, perspective taking, abstract conversations), and is THE woman in my life. Ha ha, I know she is cringing at this statement while she reads it:) It sounds sappy to her because I tend to be slightly more expressive in feeling which balances out her slightly more expressive in thinking aspect and vice versa. Next to my husband and children, she knows me more than anyone else, understands, validates and challenges. She is another love of my life and I will forever be bonded to her. Yea...it's THAT strong and yet so easygoing. I dreamed of having a platonic relationship like Anne and Diana, but this one exceeds those expectations. But it took a few years to build a bond that deep and both of us often choose how we treat each other... it helps that we both are easily able to agree to disagree or shove petty annoyances to the side and that our personalities are different enough to not be boring, but similar enough to understand at deep levels. We both love our space so it works on so many levels.

22.) Pursuing hard extended family/personal friendship relationships and also setting boundaries and quitting other hard family or personal relationships. I am so thankful for recognizing seasons in friendships and honouring the cycles. I have relationships still in my life that for a time were not relevant but I am so glad they cycled back in! I am grateful for all the beautiful friendships in my life.

23.) Stepping out of cult like beliefs- oh the glorious love infused freedom and finding faith that mimics childhood faith once again. Oh the unexplained beauty of the mysterious One Whom IS.

24.) Challenging myself by listening and reading counter balancing material from intelligent, logical, clear minded sources. I noticed that most Christians I knew (which was most of my life context) surrounded themselves by like minded people and "challenged" themselves only in Biblical concepts.

I sat in on MANY sermons, most of which are still the same today, Bible studies, Mom's groups, Prayer groups and "Truth Projects." Most of the time it was simply validation or challenge within one way of thinking. For example, the Truth Project looked open minded by bringing in Atheists and Scientists to speak their "truths" but what irked me about this, is that they picked idiotic, illogical, sensational or ignorant opponents and deemed them "professionals" of the opposing side, yet chose calmer people to present the faith side. Just like in Christianity, some Atheists are non intellectual, volatile, ignorant, or making the world a worse place in general. If one is going to seek out a way to sharpen their beliefs for heaven's sake (pun/irony intended) choose a well informed, strong opponent. The weaker the opposition, the weaker the faith. Because faith in its technical definition SHOULD NOT be defensive  because it’s faith after all. 

25.) Asking for help during PPD. I found a young pregnancy government program, which gave us milk coupons and emotional support as well as free prenatal vitamins. I was a teen and low income, so I qualified for this program. They kept me on when my other two were born because of how pregnancy and after wards affected me plus our age and income level. They helped me realize, along with a couple who were counselling us, that I had Post Partum Depression. I actually can't think of ages 18- to 25 without cringing. I was VERY affected by twisted hormones, thought patterns, and weird physical symptoms. I had constant nosebleeds, insanely painful haemorrhoid's that required specialists, nine months of severe morning sickness, skin conditions, uterine/ cervical infections that would not stop, multiple hospital enemas and many other traumatic events for a young aspie girl. I was already sensitive in my body and it felt like it was NEVER mine. Pregnancy for me was epically awful. I felt violated and betrayed by my own body. The emotional thoughts and crazy mindsets seem like an entirely different person to me. I think back and ask myself, "Who was that girl??" Yes, she was a version of me, but one I can barely relate to on any level. I am happy to report all of those issues and their lingering effects, disappeared five years after my youngest was born. Despite all of this, I STILL would say having children was the second best decision of my life, however it could have gone immensely wrong. I am lucky to have had the massive supports I did, the understanding and loyal husband, the kind friends, therapy and the other good decisions that made life better as we went along...

26.) My youngest child gets a point of his own, because of the circumstances involved. I miscarried three months before I became pregnant with my youngest. It was traumatic and involved a hemorrhage. It was also an unexpected pregnancy. After the grief process, my husband and I thought long and hard about our future and life goals. I realized that even though I had tough pregnancies and PPD, that maybe it was worth another life in the world? My mind was already adjusting to a family of three children. With great trepidation we decided to try for a third. It was my best pregnancy although it came with it's own issues like bleeding for the first three months...but I actually enjoyed a bit of being pregnant. I finally understood women who loved pregnancy or obtained a pregnancy glow from time to time. I also had a good labour without trauma and bonded well with him after because of that. He was my healing in so many ways. We decided after that to get a permanent form of birth control because we ended on such a positive note. I still had a few lingering effects of PPD but nothing compared to what I dealt with in the earlier years with the first two babies and other miscarriages. When each child passed five, my life became normalized. Now I LOVE having children in my home life. Even though the younger years are adorable I barely got through them, but passed five, the conversations, support and love I have with each of my children are worth the years in hell I endured because they make up for it a hundred fold. Plus, it wasn't the children's fault and I did my best during those years to make sure they were as unaffected as possible, though I was deeply affected...and so was my husband. We don't often speak of those years.

27.) Hiring a doula for my second and third labours. This changed my life for the better. I took back my own care and gained independence from the medical system with this decision. My health improved, I learned about patient autonomy first hand, and I did not take any pain medications for those births because she got me through. They were painful and tough, but my doula enabled me to be at my best. For a woman who is already sensitive, differently wired, and has chronic health issues, this was a huge aspect of my personal rights.

28.) Watching Glee. I know that it sounds odd...and in fact, I still have a hard time with parts of each season, but it stretched me into thought patterns and acceptance levels I would not otherwise have today. For IT'S TIME, it was a needed, new perspective. Now, the concepts are pretty old hat in some movements, but Glee paved the way in both music and acceptance and changed our culture. Most of all, it changed me, on many levels. Especially with a lot of the story lines in season 2.8 (Blaine and beyond) and beyond season 3. It was a show where I finally felt like I belonged. I felt accepted. I no longer felt odd...and it expressed my soul through all my favourite mediums of song, dance, film, and pop culture references. It also re introduced unrecognized music that finally has it's place in known culture today. It was irreverent and sometimes crazy outlandish but also deeply resonating, touching and heartfelt. It was sometimes remarkable, other times escapist, sometimes too raunchy for my sensibilities but other times the profane was purposeful to point out hypocrisy (and also remember the demographic- it was targeting 18-49 year olds) and then downright mediocre with some episodes...but I chose to stick it through, and although I would rather forget multiple episodes, the jewels within gave me food for thought, inspiration, and encouragement in my own life stances and choices. Plus, it made me cry and not a lot makes me cry. It was an outlet to my life when I was in the midst of making crucial life choices. ( I watch the christmas episodes every year with my children, except Previously Unaired Christmas, which actually came with it's own warning for being offensive on multiple levels- Do not watch that episode until you are well versed in Glee or skip it.) It also keeps me motivated now on the Treadmill because I see the young actors ( my age) doing these incredible moves while singing and acting, and I want to be able to at least sustain walks with my children at the same age. The songs are an added boon.

29.) Choosing to pay off debt and be intentional about money. The blog Mr. Money Moustache CLICK helped me in this regard. Money is security and a basic level of happiness in many senses. We have been poor, making 600 dollars a month in Canada while having two children in a low income rental house- I honestly don't think we would have made it without my parents and our support system's generosity from time to time. We have also known fairly good financial gain when we were able to focus on most of our debt...and the freedom that came from not having debt was HUGE. I encourage my children to choose decisions that enable them to be free with their money. So that they can work at any job they are able with hard work, but then take off a reasonable amount of hours to pursue passions and beauty in their spare time. I strongly encourage them to not spend money on higher education but to become differently educated. It IS a possibility in this day and age to search out both peer reviewed sources and original sources to learn about any given subject. I teach them that being a student and a lover of learning are two very different concepts. But if they chose higher education debt, that is also their choice and comes with some pay offs too. However, life is about choices, and I am so relieved my husband and I chose to quit our multiple programs for better stability. I am also glad we chose to live life mostly within our month to month means and focus on our financial goals as a family, as well as within our values.

30.) Renovating our "starter home" into a new version of our "dream home." I never wished for a bi level. I wanted a small, one floor cottage out in isolation. However, we realized with the deal we scored our home with, it was advantageous to make it matter, by staying in it. Thus, after five years of living on the top floor only, we managed to save enough to do basement renovations. Along the way, as we could afford it, we made small, enjoyable creative changes to the house. We built a gothic arch in the front wall for fun...and for that matter...a retaining wall that took five years for my husband to finish. I hated it at first, but now am glad he persevered with his vision. We built a library/rec room because we both thought a home should have a library and a garden. We dreamt and planned the layout ourselves and spent hours of our time creating. I look back at those years as my favourite. It was hard work and our house isn't what I would have originally thought out myself, but for what it is, it is creative and fun. Most people who walk in say comments to me like, "I have NEVER seen a house like this!" or "This is magical...how do you dust it all?" :) or "I walk in and it's twice the size it looks like from outside- I could get lost in the layout because it seems so huge." or "How much work was this? It's like a piece of artwork." or "It's like artists took over your home and created an interesting masterpiece that makes the collector wish to live in it and snuggle up in one of the hobbit holes." - That was my favourite comment.

There are many important small decisions that made our life better as a whole, as well as individually. It is impossible to sum up all of the life changing decisions of thirty plus years, but these are the ones that immediately came to mind. I am so grateful for my circumstances and privileges, but a lot of these aspects we also worked for. We worked HARD to make the life we have today. It was with great preserving, and hard choices. Changing mentalities is never easy work. I am proud of what we made even if we also unmade aspects of life as well. A good life isn't just handed to someone. Yes, there are many factors involved that we should be grateful for, but a life can be ruined or inspired with the varied choices. It takes grit, determination, responsibility, ethics, morals, and autonomy to create a satisfying existence. This is part circumstance, part mentality and part work. Your best choices could be the exact opposite of most of mine and still be fulfilling. Creating is half of the fun.

"Hope when the water rises you built a wall...Hope if everybody runs, you chose to stay... Hope that you fall in love and it hurts so bad, the only way you can know you gave it all you had. Hope you don't suffer but take the pain. Hope when the moment comes you - you'll say, "I did it all." I owned every second that this world could give, saw so many places the things that I did. Yea, with every broken bone, I swear I LIVED. Hope you spend your days, but they all add up. And when that sun goes down, hope you raise your cup. I wish that I could witness all your joy and all your pain. But until the moment comes, I'll say..."I LIVED."- One Republic

I know I can say "I lived and owned every second." How about you and your choices? I hope they feel just as satisfying and if they are not, that the choices in the future reflect whom YOU are.

Afterward: I finished reading the final sentence of this post to my family and my daughter jokingly goes "Hashtag Kmarie's life hacks" thus I added that for fun, to my title:)

Song choice:Being Alive- Barbra Streisand:

 I Lived- One republic ( The beautiful video about the 15 year old who has cystic Fibrosis is also touching)