It had been five years since we had crossed the floor of the establishment. The wooshing of the door swept us into the Diner while rock music played and the smell of delicious spices filled the air. Abe's was a locally owned and operated celiac friendly diner with superior food choices. We used to head towards the mountains often with our family of five, and Abe's gave us a sense of food safety, cheery dialogue and delicious delight.
After we ordered our Gluten free brownie for our appetizer and our burgers for the main course, we soon found the owner, Louis, at our table with an exuberant, "I KNEW it was you! As soon as I heard the order for a brownie first, I thought, these are my people, the interesting ones who eat dessert first always, even with younger kids!" We caught up with him and it felt like we were still five years younger, as if no time had passed at all, and we were still considered unique enough for an owner to remember us.
I had been struggling with age related changes; new wrinkles, crinkled skin around the elbows, translucent older hands, eye puffiness and feeling the creak of new pains and chronic illness related aging. I was feeling a bit too old for this world, washed out, irrelevant, with all the large moments behind me. (I know it's maybe laughable for those older than me, but approaching forty with chronic illness has not been a picnic either within this new transition, after three months of varied sickness and a semi bedridden state. I knew I should feel so grateful for all that I have, but the new step into a different phase of life was still a transition I was coming to terms with.)
Louis excitement and genuine interest in us, made us feel a bit hip (if that is a word that is even used anymore!) or at least, memorable. Buffered by his statements, I felt revitalized. Which triggered a question to myself, "What little moments in daily life can you notice to revitalize the magic of BEING?"
Sensory is both my magic and my hardship. Isn't that the way life tends to go? Each moment can be used for good or ill. Bad things can be transformed or redeemed. Goodness can become corrupt or perverted. Life is BOTH/ AND. But sometimes, I can focus my lens too much on what I am doing wrong or all the new lines and bags of my skin, and forget to look into the beauty both around me and in me. This body may not work at optimal and trigger me into phases where I do not feel like my full self, but it is also my vessel in this world. I smile, hug, love and write with this precious vessel of imperfection. Using my senses, I can choose to hold into perspective, the sensory around my day, that gives LIFE.
So, in that vein of thought, without further ado, the moments I have taken notice of since Louis triggered me back into BEING:
* A Million Dreams soaked into the walls as my son gracefully played the tune from the piano in his room. At least once a day, he will sit, sometimes for hours at a time, and just play his heart out. Minutes later, my home is echoing with remnants and reverberations of rhythm and soul. Our company will ask, "Who is playing? That is so beautiful." My heart will swell with joy, that my son, who could never attend piano lessons, attends to the joy in his expression and becomes one with the music.
* Silence and the quiet evening hush is often interrupted by the tiny chomping noises down the hall. It is my cat eating his food at night. It sounds like someone eating corn pops. I will often smile and get tingles of memories from holidaying as a child and eating out of the mini boxed corn pop containers with a dollop of poured milk inside. That sound has tones of water lapping from lakeside days, and towel scratching sun soaked afternoons. Often most of the house is already snoozing, but the cat and I are awake, visiting moments of satisfaction; His in nurturance of the body and mine in nurturance of mindful memories.
* Witnessing my name in an a published book and having a little blurb in another chapter! Thanks Jenna and Jennifer for this amazing opportunity and friendship! LINK HERE. I am going to hopefully gobble up this book this weekend! Woot. I am just so ecstatic for Jenna and Jennifer!
* In the midst of catching up with a friend I had not seen in over four years, the conversation was swiftly changed when she remarked, "Oh, how lovely! I have not heard that sound in such a long time. I absolutely love your husband's laugh. It's so full of joy. You do not get to hear that sound much but it makes my heart happy." I felt proud and happy that my husband not only is admired in his hearty laughter by me, but gets the deserved notice from others and they in turn find some joy.
* The burnt smell of glue gun greeted me as I walked into my eldest son's room as he was creatively making stop motion pieces. My mind stuttered out of the to do list I was compiling in my head and flowed into awe at how brilliant his actions in life can be. (Picture above is his requested Punk birthday we did on the fly!)
* My daughter's laugh is loud in the best possible way. I can hear her joy from across the house. I recently read a quote that stated; "You are so much sunshine to square inch." Walt Whitman. Of course, I sent it to my daughter because it summed her up in a nutshell. She has so many strong emotions, that often I need to step back for a moment to gather my bearings, but sometimes, I forget to just allow the beauty of them to BE different from me.
* My eyes were craving green. In the past I had not had success with green in rooms. Being partial to emerald green, but having darker light, I needed to find a green that filled my constant craving for depth in colour ( I tend to shy away from any cold colour as paint in my home) without being drowned in tones of grey or lime. I woke up one morning deciding to change a few pieces of furniture, but we ended up clearing most of a wall, so I thought, why not try painting green while I'm at it? In one afternoon and evening, I had painted three coats of a colour I randomly picked online called Evergreens, after phoning into my local store, charging it to my convenient hubby's carpenter account, and hoping it worked in my house. (Not the smartest idea but I was in one of my "mad creative moods where there is no reasoning" as my husband likes to describe it as.) I briefly mudded, and put the entire kitchen back to a new arrangement. My dining/ kitchen is my trickiest space in my house due to the multiple pathways and as the Genie in Aladdin states, "Itty, bitty living space." I had always wanted to bring a lounging chair into the kitchen. My husband thought it was unrealistic and slightly indulgent but in the end I won. While not my favourite green, the colour chosen, wasn't icky either, and evokes a feeling of freshness I do not fully get in the rest of my home. I read once that people tend to be the most opposed in their feelings towards green in the home. For myself, this time, I am loving the new beginnings it begets.
* Bella Grace click (And their other publication The Field Guide to Magic which is tough to find here in Canada) is my occasional money indulgence. Sometimes I cringe at the amount I am spending on a magazine which could go toward bills or groceries, but each time I can afford the splurge, it is worth the extra pennies. (I guess I am aging myself in my phrases!) Recently I cozied up on the kitchen lounger I had moved from a room downstairs and read to my husband while he cooked up savoury chili. The aroma of garlic accompanied my voice, as I choked back tears at some of the beautiful words in each article I traversed. My husband would give an occasional thought or chuckle or vocal "hmmmm" and I realized, I did not just invest in a magazine, I invested in a moment, a marriage, an inspiration and a delight.
*My youngest stopped to kiss my forehead as he does each time he enters or leaves any room I am in. This time, as he departed, a mischievous grin crept upon his face as he stated in a deep voice, "And now I must go, I have smart things to do and handsome mirrors to meet. Goodbye fair maiden." And as usual he left me with cheery mirth as my companion. I love hearing his brother and him chuckle and whisper on their almost nightly sleepovers exchanging mattresses in each room.
*Lisette is a mystic, astronomer and guide I met this year who lives on the bottom of my continent while I live near the top. Not being on social media, it is a bit odd that we recently connected. We had a mutual friend who had stated to each of us that we would like each other and simply had to meet. Dear Amy, set up an appointment through Zoom for us. What was supposed to be a half hour official appointment ended up being a four hour chat and an exchange in our talents instead. Both Lisette and Amy had heard about the unusual death of my brother in law in the Autumn and wanted to give support. Lisette told me that due to my Scorpio nature, the next few months would be reliant on friends and family for wage. Frankly, I dreaded that and was hoping it wasn't entirely accurate, but as these things go, it was not in the way I assumed. My husband, a carpenter, ended up getting work, project to project, based on people we knew from that moment onward. I love it when the messages of love, spirit, temperament, environment and personality open up to the dialogue and flow of life. On Friday I get to connect again. In the meantime, Amy, our mutual friend has been editing another project I have in my creative fires, and has given me much to ponder, appreciate, savour and be thankful for. Free time given from a friend is so valuable.
*The times that I have gone up in size, I usually DREAD or try to avoid shopping for bigger clothes. I tell myself it's temporary and to not get comfortable. The problem with this mentality is that I am not only uncomfortable but constantly cranky from tight pants and restrictive fits. Luckily, I re wardrobe our entire family at a consignment store called Platos Closet. We have not bought new items in over a decade unless it is of the personal nature. Thus, wardrobe changes are often fairly cheap. My weight fluctuates regularly, seasonally and in chronic illness phases. I range from a size 6 (the smallest I personally have ever been) to a size 12. Generally I feel my best at a size 7/8. Knowing this, I usually keep clothes from every size, but last Spring I went from a 12 to 7 in three months, and never wanting to go back, I got rid of most of my clothes in hopes of prevention. Gah. I annoy myself. Anyway, my husband took me last month to buy a few fitting outfits in the size 10 I find myself in. I almost cried at the cute outfits that would not fit, and the reflection of the ones that did...but the silver lining was a moment when I saw the employees, some of whom were double my size, rocking outfits and looking far more beautiful than I felt. Suddenly, I took off my sizest lens. I thought, "Hey, at home I may be surrounded by only skinny friends and be the largest one, but out in the world, it's a range...and these girls are incredibly beautiful. Skinny does not mean successful. Skinny does not mean altogether perfect. Skinny does not mean that I am worthy. Cellulite should not define me. It does not mean I do not make wise choices in food or am lazy. It does not mean I have completely fallen off the bandwagon of health." And just like that, my perspective changed to the statement, "I GET to buy new clothes" instead of "I HAVE to buy new clothes." I will probably be writing about this again, as it is my ever struggle, but for now, as I strive on the treadmill and hope for a bit of loss, I am reminding myself not to live in "if only."
*My sister crafted a Gluten free high tea that tasted better than the posh Banff Springs Hotel High Tea. I love freely roaming Banff Springs, but they have nothing on my sister's creations! Holding the little cucumber sandwiches and tasting the delightful orange meringues, my tongue sizzled with sweet and savoury sensory satisfaction.
* Since November we have had a month and half long Influenza, followed a few weeks later by our family getting Covid. My husband had missed a bit of work. I missed three full holidays. It had been three years since we had experienced even a cold ( as far as contagious illness goes! So I supposed it was our turn.) A friend recently learned of a myriad of inner struggles we have had since, and gifted us with a gift card to Costco. I choked up a bit as I struggle with taking and not giving immediately back, but also with the lovely words she accompanied with her gifting. Our fridge was almost empty and I had been creatively serving whatever I had when company came calling. Popcorn and tea mostly topped the list. I also like to show up to people in need or whom are grieving in our community, so often my gifts are from my own pantry, home decor, or gift box I keep with collected discount items for such occasions. We have been semi- rich and we have been semi-poor. I don't think, from the outside looking in, that most people can tell which seasons we are in, with the house the way it is, and the lucky lifestyle we have. What I love about the poor moments, is that they taught me how to be savvy. Even in our richer states, I don't buy new clothes, I still buy on discount or sale or wholesale, and I thrift often. I apply for suiting programs I hear about when I can. I enlist extended family on hunts. Recently, my father knew we were driving the entire winter with bald tires on our one shared vehicle (a van my husband also uses for work. In a rural area that can get to weeks of -20- -30 Celsius vehicles are a MUST and the crazy fuel prices have been incredibly restrictive. ) My dad knew this because we would borrow mom's vehicle at the beginning of the month for our Costco city trip. Thus, he searched, and yesterday we fit our (new to us) cheap winter tires on our vehicle almost in time for Spring. Which means we will definitely be driving on them this summer, but oh how lucky and free we feel to be able to drive out of town without asking our parents permission. Ha!
*Shimmering specks float off our frost covered trees. The dreary fog plays an accompanied symphony on the background of the canvas. I live for sunshine but sun moments can still be found. There is something beautiful to a repressed landscape covered in crystal, snowy white as far as the eye can see. The air is heavy with condensation. Chilled, the fireplaces turn on, the Earl Gray Cream tea is brewed, and globs of raw honey are consumed. These are the days for writing. These are the days for wordy bliss and speculative imaginings. These are the days for transfiguring womb time.
In complete honesty, most of my regular readers probably already notice that I tend to take less pictures in seasons of weight and chronic illness struggle. I am trying to be more active about savouring the good so I have included the few I have taken here. Spring is around the corner. I can feel the hopeful awakening. The earth is getting ready with new shoots under the surface of ice. New beginnings are gestating. Womb time is almost over and the re birth is ready to give, become, and grow. I anticipate, while also reminding myself about the beauty of the remnants in late winter. Cushioning, comfort, weighted belonging, tea and book studies, and blanketed movie nights are wonders too. Whispered conversations with High School besties about vulnerable and intimate topics, just in case a teen ear may be trying to listen, can be just as satisfying as exuberant laughter and raucous joy.
This was our today …
Whatever season you are in literally and figuratively, remind yourself of the simple daily pleasures. Remind yourself that it's ok to BE. You are worthy and worth love simply because you exist.
Love;
Note: My ordinary struggles tend to surround chronic and contagious illness and go hand in hand with mental dips into depression ( influenced also by autistic sensory issues) , existential crisis ( this time aging) and marital issues when both of us have been sick for months and our relationship was not fully up to par. I want to state that I have enjoyed a beautiful existence otherwise, with many, many incredible friendship moments and I KNOW I have a lot. However, that does not negate the true gritty struggle of balancing a condition with recovery of contagious illnesses on top, plus the mental spiral that is real and legitimate. I have not been at my best. But I have hope for another version of myself to emerge from this frazzled cocoon.
Song Choice:
Nicole Mullen and Kathie Lee Gifford created a ten-minute narrative song called The God Who Sees. When I first heard it, I wept. For the next month it was the soundtrack for my treadmill sessions, when I was worried in bed, or on a drive. My family would tease, “I heard mom this morning singing and crying on the treadmill…no wonder she was out of breath later!” The song opens with the biblical story of Hagar and then Nicole begins to sing, “She’s crying in the desert, she’s lost in her despair. She thinks nobody loves her. Hagar thinks nobodies there. But God says, ‘I will be a ring of fire around her, and I will be the glory in her midst. And the power of my presence will bring her to her knees, and I will lift her up again, for I’m the God who sees.” In the music video, near the end, a ring of burning fire, in a setting in Jerusalem, surrounds Nicole. It was both what I would call ‘witchy’ but also incredibly sacred and full of God. The image of God being a ring of fire around me both humbled and empowered my perspective of life. “She’s hoping for a future, praying God will lead her there…” I often wonder if I have more moments left for my future. I have had a beautiful, full existence, but nearing forty, I have often felt I had all the “big” moments already. “David thinks his life is over, and God he doesn’t care. But God says, ‘I will be the rock of your salvation. I’ll hold you up by the strength of my right hand. And the power of my Spirit will free you from your fear. In the hour of your deepest need, you’ll find that I am near. I am here. Because I will be the ring of fire around you. I will be the glory in your midst. And the power of my presence will bring you to your knees, and I will lift you up again for I’m the God who sees.” My spirit felt validated. If David felt that way, and his heart was after God, it was ok for me to feel that way too. Of course, I did not have to hide in the desert from my own son (that would be an ultimate low) but I had my own struggles. I, like Hagar, often hope for a future while also wondering and questioning my worth for such a thing. “She’s crying in the garden. She’s broken in despair. She’s searching for her saviour, but his body isn’t there. Then He says, ‘Mary, glory, glory, halleluiah, I will be the glory in your midst. And every knee will bow to me and every tongue confess, and yes all the world will worship me in all my holiness. And I will be the ring of fire around you and I will be the glory in your midst. And the power of my presence will bring you to your knees, and I will lift you up again for I’m the God who sees…who sees you in your wilderness, sees you in your brokenness, when you’re feeling lonely, in the desert places, in your empty spaces, I’m nearer then you dare believe. Here in the very air you breathe. I am the God who sees You.’”
(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.
"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,hereandhere. 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 asone 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....:)
