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

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

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

Image from HERE

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Two posts that I also specifically mention Wonderland are:

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

and 

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

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

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

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

(*2) Metallica One. Click HERE.

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

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

(*7) Here you come again- Dolly Parton


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

Bonus song:) Wonderland:

Catch 22 in Health, Low Ferritin, Lyme, Autoimmune and Anemia. The Dangers and Experiences of Iron Transfusions. The Valiant search of Women Warriors for Low Ferritin Answers.

The Internal health practitioner didn't know what to do with me. I refused the blood transfusions and infusions again. "Why?" he asked. "Because I've read about the anaphylactic reactions." "Well they have a team of professionals in case that happens at the hospital. " "Um sorry, that does not reassure me. Those 'professionals' have failed one too many times." (Besides with that logic- should I go try to jump start a massive allergy attack because there is a team of professionals ready?) He just smiled. Later he asked me what profession I was in because I kept up with all of his medical terms and knew everything he was talking about from villi to urea to inflammation responses in physiology.

I can be annoying like that.

When I replied that I was not in medicine but a homeschooling mother, he replied, "Oh so you have a lot of free time on your hands." To which my irritated response was, "Actually, I read medical journals."(I use my time wisely, teach complex philosophies and...) Usually I do not think on my feet in medical situations so I was impressed that for once my fighter spirit sounded clear and logical. He seemed more amused at my response than insulted which in hindsight is probably a good thing. He asked if I had seen a Naturopath as some of my jargon gave me away. I asked him if he took issue with that. He didn't comment so I smiled and said," I believe that there needs to be a balance in medicine of naturopathy and allopathy for the human body and mind. However, I am skeptical of BOTH equally." He laughed. Which I wasn't expecting as I was slightly annoyed. However, to his credit he informed me that "Well, we will try to contain your skepticism by treating you appropriately and hopefully by improving your condition."

It was slightly disheartening though because in the last appointment he chalked my iron issues up to my cycle. When I asked about absorption he blew it off as irrelevant. This time he looked at me like I had grown two heads, kept checking his notes, hummed and hawed and said that it seems like I have an absorption issue. He said my fallen levels despite taking iron indicates that it is NOT a cycle issue. Yet he thought it seemed like inflammation but that he does not think I have inflammation. I bit my tongue because I KNOW I have inflammation. I have been diagnosed with multiple conditions of inflammation but I suppose some professionals think those are irrelevant and I am unsure what to believe myself. Also, in the last month, my dentist, YES DENTIST, and Optometrist BOTH mentioned inflammation as the cause of my issues there. Regardless, it is back to the drawing board, that has been my life in medical situations, regarding my weird blood for the last ten years. I will attempt another H Pylori test next week which is an easy test to do and I appreciate the effort to look again from the doctor.

But I am tired.

My RBC levels are finally in the "normal" range so I am not considered Anemic by standard doctors, yet the Internist said, "It is not good. You should not be concentrating on much other than getting your Ferritin up. This is not an acceptable functioning level for any human being." Sigh. Yes, I know. I FEEL it. I felt the drop. I can sense the point two deficit in my day to day existence just like I felt the7 point uptake a month ago (CLICK). With every point Ferritin MAKES a difference. My body tells me Ferritin increase is imperative but there are some things I just can not do. Like consciously risk anaphylaxis shock. I know it is ridiculous probably because I am risking a whole lot more taking the slow route...but I just can't. There was an episode of 'Young Sheldon' in which Sheldon choked on a breakfast meat ( CLICK) and could not eat solid foods for five weeks until he read a comic book which inspired him to face his fear. His older self delightfully narrated that he was finally over his fear of eating solids that day...and then proceeded to list everything else he was still afraid of.

And that's just it.

 An Autistic's brain can NOT fully get over some fears because we see the world differently. And the fears are not irrational to us but statistical. Sometimes it sucks to be well informed, researched, and not easily conforming to the masses of authority figures. We seem ridiculous to the average onlooker but in our heads we know we are smart. The world just isn't ready for us still. (CLICK this post about autistic contortionists.) We know why something is not worth the risk for us. We know why germs are scary. Because they KILL for one, and also because we have experienced misery at the hands of sick bugs and do not wish to willingly go through that sensory hell again. Which is the only way I can explain why, unless it is a last resort to death or beyond, I will not be taking the iron infusions.

This post is for those unlucky souls who are in a catch 22 of health. Where an attempt to correct or to cure causes irreparable damage....yet it can not be helped. It is a helpless place to be in, even while one fights for their autonomy. I also dedicate it to the women on health boards and Instagram stories that I read about regarding low Ferritin. ALL of you inspired me. ALL of you made me feel less alone and gave me tips to approach my own decisions. I saw many photos of women warriors taking corrosive material into their blood, so they could be the best they could for the people counting on them. I heard strong tales of struggle, heartache and questioning. I saw beauty in the raw tales of blood and loss. I heard the upsides and downsides. I saw the results in others lives (or lack thereof.) Thank you for telling your stories.* *As usual, any medical advice should be taken with wisdom, assistance and talking to a professional who knows your condition, before you make a choice.*

I spent a horrifying few hours reading stories on my husband's Instagram with the hashtag #ironinfusion or #ironinfusions or #bloodtransfusions or #lowferritin. The only redeeming aspect of this was finding out I was not alone. This fact also was a catch 22, because I would almost rather be alone. I hate knowing that hundreds of others suffer from the same issues and many of them are still asking for answers after many years of searching. The commonality in all of these fellow warriors was that MOST did not know what their cause was. The most common cause known for low Ferritin which was cited was Chrohn's disease or previous surgeries or bowel tests causing bleeding or ulcers. The minority knew for sure what their cause was. The rest were still searching for THE reason their Ferritin would not go up or they had the ambiguous hashtag #lyme.

Lyme disease is a very tricky beast to figure out, cure or even diagnose (speaking from experience) and even though it is related to low Ferritin, most doctors do not know how to approach it, nor do the patients. It's a guessing game where the patient becomes the dissected trial. A vast majority of low ferritin sufferers were also runners or high intensity work out patients...oh and all except three of the hundreds I scrolled through were women. For some their cycles were blamed but most knew that was not the root of the issue. Men naturally have more iron in their systems and often will have the opposite issue of Haemochromatosis, which is serious, so I urge any man reading this to get checked or at least donate blood if you can. Donating manages this risk.  Most of the women were trying out infusions because they were so tired of being tired.

Here are a few posts (with the names cut out for privacy) to give an idea:

What stood out from this was the nurse stating, "Well you know, it's a corrosive heavy metal that we are pumping into you. It's very hard on your veins, your entire body, and it takes awhile to recover."  That is another catch 22. The body needs a certain amount of iron to function but even taking iron in the pill form has it's risks. Iron is not broken down well from the liver which can cause complications later in life. It also can feed cancer cells and up the chances of cancer later in life. For Lyme patients this fact is even worse- Iron FEEDS bacteria which then increases Lyme regression, attacks, and worsening of the body's condition. BUT, if levels of iron in hemoglobin are dangerously low, cell size has shrunk, or ferritin is almost non existent, there are risks of death, heart attack, stroke and numerous other conditions. Thus, another catch 22. It feels like the patient is screwed either way.

Recently my iron went from a point of two to a nine. I felt WAY better (CLICK HERE.) Nine is the highest I have ever managed to attain in ten years. It fluctuates. For it to jump that high in a month due to Ferramax and help from my Naturopath was a big deal. But then, this last month right after, I dropped two points to a 7 (CLICK.)  And I felt the difference. My Haematologist was not happy. My life has been reduced to numbers. Well, not completely, but that exaggeration feels true sometimes.

Another commonality I found in all low ferritin sufferers was their mental strength. Most of them had horrid experiences, not a lot of improvement even after their infusions, and a general bone weary exhaustion in life and yet they seemed to be like myself... they were fighters for the bright side of life. They often would use phrases like, "One day at a time right?" or "I'm so so tired..." followed by "but I'm grateful."  These are women who don't know from month to month how life will shape up for them. They can't make plans in advance. They trudge through their days wondering WHY they feel the way they do. They hope the next doctor will know. Many are at the mercy of guesswork. The lucky few find an insightful, brainiac doctor and find their way back to 'normalcy.' ALL of them had chronic conditions like Fibromyalgia or Lyme or Celiac or Crohn's Disease or Colitis or...ect. ect. Many were not sure if it was the chicken or the egg? Some speculated the years of low ferritin caused the autoimmune response while others believed the autoimmune diseases caused the low Ferritin. Who is to say? All were searching for more answers of healing. 

I love the post below. I found that this lady had amazing perspective. It resonated because she uttered statements I have said before like;

 "My doctor says I'm quite the conundrum." 

"What am I going to do with you? He is not the first to ask that question."

"Because I have worked so hard on my health and fitness." (Amen sista!)

"I'm always tired, though. So tired that my tired is tired."

"I don't actually remember what it is like not to be tired."

"It will be interesting to see what normal feels like, whatever that is."

"I'm slightly annoyed by the inconvenience."

"I'm really so fortunate to be as healthy as I am."

Her last statement and comparison to Chemotherapy is unfortunately a common comparison. I have read multiple boards of women who will say that. While it is good that we can acknowledge worse circumstances and are grateful for the health in ours, and have compassion for cancer patients, it's actually doing a disservice to both parties to compare. I read a study that cited low ferritin as the same level of exhaustion and some of it's treatments as the exhaustion from chemotherapy. However, Ferritin patients are lucky to escape the rest of the cancer complications…though some of them are patients of both unfortunately. I am very grateful that even though my situation is precarious, I am not yet projected to be fatal. I have immense empathy for all the sufferers in the world. There are WAY worse conditions in life. Cancer IS one of them. I am still functioning almost like a "normal person". My hidden illness is both a blessing and a curse. However, I DO believe it is important to keep perspective. Not comparison. To realize the beauty and gratitude in my situation. When I can, it is important to support the awful situations of those I love and to see their differences without allowing them to negate mine or other's experiences. I will do my best to show up, how I am able. I love that the woman in the post above was using her walk past the cancer ward to enable her perspective. It is why her post stood out to me, as well as the other statements she said that sounded a lot like myself, but I wish to include the caution that perspective does not mean comparison. It still sucks to face risks of another sort in another condition.

"Anemia is being more than just tired or cold. The symptoms that a lot of people don't talk about is the fast heart rate, struggle breathing or pica...I couldn't remember passwords, family members bday, and my own social security number. I had to relearn things that I would have known before. Nothing could have prepared me for this journey... I don't understand why I have to go through this but I know I am strong enough to handle this. I have an amazing support system." - I feel the same way. I think most of the women I came across had similar sentiments. I especially have empathy for the low ferritin sufferers/anemics who have no support at all. My husband will often bring me heat bags when my feet or hands are so cold they are in pain. No amount of rubbing or blankets or even putting my feet on his torso will change my condition until I either jump in a hot shower for a longtime or use a heating bag. Although when desperate and with no other option, he will lift his shirt for me and I will put my hands or feet on his warm torso or back, because I am almost crying from the cold pain. My pits do not work because they are cold too. My own body heat does not work in these circumstances. It probably looks hilarious but my children are used to it. If he is not home and my heat pack can not be found sometimes my children will take my hands and put them in the folds of their elbow until I can feel my fingers again. That's just one small aspect of low ferritin/anemia that is inconvenient on a daily level. I can not imagine having no one for support with the other symptoms. It is a family effort to keep our lives ongoing and the chores done with my level of exhaustion. I do a lot for my condition but I am ready to admit that my support system is integral to my fight.

I was searching for stories late last night, because I was considering infusions. That quickly changed as I scrolled through the many stories. Most were not too successful. Some were for awhile, only to be back in the same boat months later, after going through the trauma and side effects. That is not  worthwhile incentive for me. After listening to the personal posts, I read a few peer reviewed medical studies along with medical sites that promote infusions. (Insomnia at least has a perk of loads of research time!) The post image below gave a good summary of the common side effects I found from iron infusions:

In summary, there is a strong history of anaphylactic shock which is why they enforce Benadryl in the IV as well. If you get past that point, it is similar to the flu but worse. Iron is corrosive. It is hard on the body, blood and veins. It is VERY hard on the system and takes days to recover. The side effects are prominent and often include vomiting, immense abdominal pain and cramping, muscle cramps throughout the body, pain down the limbs, lack of saliva and a metal taste in the mouth for weeks, anxiety ect. Some of the women were still experiencing side effects months later. One story had a woman whose iron fell even more after the infusion and she experienced diarrhea that still was not fixed three months later. That symptom began after the infusion.

Basically, I read enough to know that I would have to be KNOCKED OUT cold on the floor with no hope of waking, to be forced into an infusion. No thanks. Yes, I do realize I am choosing to die slowly instead, if my ferritin does not improve, but it literally will be my last resort and ONLY if I am unconscious and my husband chooses it for me. That sensory onslaught plus being at the hands of medical staff when I already feel out of control, plus the risks, plus possible long term and short term effects does not sound appealing to me. Some women chose it and said it was the best choice they could have made. It truly depends on the person. I know myself to know that it's not going to be good. It most likely will backfire. I have suffered more from secondary complications of medical procedures in the past to know this. Unusual things. Doctors didn't believe it unless they witnessed it. For example, when the scope was inserted up my nose, I would not let them finish because I felt something weird. They were SO mad at me. I said it was unnecessary anyway because it was an appointment for a nodule on my thyroid that was already confirmed via ultrasound. There was NO reason for the ENT to be up my nose. When I fumed out of that office, half an hour later on our 3 hour drive home, I noticed a lump the size of a mini goose egg forming above my nose. I immediately called in and they said it was unassociated and 'impossible.' It was clearly from the procedure and I had a headache for days after. My nose also was in pain. My husband witnessed it and I took pictures, I wrote in and they dismissed me. They were rude after being initially kind in the office, because I was unusual. Almost a full year later, a skin tag/mini lump inside the nostril they went up is still there, and it appeared after that appointment. These are small side effects from a very small, not even finished, procedure. I have had this happen with immunizations (luckily Benedryl and the epi pin was administered right away) and other procedures... I can not willingly walk into a situation that could potentially carry those risks.

Many of the women I witnessed on forums and posts were around my age with young families, or they were previous runners and health fanatics. Most even looked a bit like me... with my body type, make up tendencies, and how I take pictures...which I found interesting. Almost every single one of them "looked healthy." Yet, they were fighting for their lives to exist on a level above exhaustion. Most had struggled for years on and off and if I scrolled through a few pictures (cuz I am creepy like that- if it' public- it is available) I found that a lot of them would have photos of them hooked up to a transfusion but in the next few days they were running or on the beach or smiling with their family... In photos previous to their infusions or health updates, they often looked normal, balanced and healthy. There were a few occasional hashtags of #chronicillness or #spoonie or #exhausted with dark circled eyes and a few marks or rashes on their faces.

One of the articles I read spoke about the gut being related to Anemia (which we all know is true on some level. Everything begins in the gut, the second brain of the body.) Often anemic patients with low ferritin have zit like rashes around their mouths and on their necks. The bowel specialist said this was from the body trying to get rid of the toxins unsuccessfully. The toxicity of the extra iron in the supplements plus the bowel configuration of autoimmune patients usually results in a lack of good gut flora and bacterial balance in the body which then makes absorption impossible. Yet another 'catch22'. Fermented foods, yogourts, kimchi and all the usual gut healing options were mentioned...and no gluten or sugar even when you are not celiac. I already do all of that. Although I found out a product I was consuming from last January to August every morning (my granola) had wheat in it- I somehow missed that! I thought my mono at the time was causing my gut pain and I even asked for a stool sample because I could not figure out why I was stomach/gut sick every day. Luckily, I ended up scrutinizing all my usual foods and in August realized I was consuming gluten regularly. As soon as I stopped the granola, two weeks later all my gut symptoms disappeared. My absorption could still be affected from my villi inflammation during this time. Know your foods. Know what you consume and what makes you feel sick. This information matters. This information is also both validating and depressing. Those who are chronic illness sufferers of any type, often know their condition inside and out. If they have suffered, they KNOW what will help, the latest research, the diet suggestions, what options there are ect. and YET they are still in their predicaments years later. This is one of the most frustrating aspects of chronic conditions.

I don't have any answers for this. Each time I think I have an answer, a few months later it is disproven. OR I obtain mini answers like diet related aspects, but I still end up with my fallen ferritin levels. It's a constant cycle. A roller coaster of information overload. It is a mixture of doing and being. There are many moments that I just give in or give up and ignore that I have anything...until the thoughts I push to the back of my mind remind me that ignorance can be dangerous. Or more often then not, my symptoms force me to face myself. Then I face it all over again. The worst parts about most of the information are the 'Catch 22's.' The constant circles. One damaging result causing another but if that result doesn't happen, another just as damaging condition will take it's place. It's loads of laughs...Hysterical laughs... or half sobbing laughs...or worse, being unable to laugh. There have been multiple moments on bad days when I am unable to laugh hard or cry...because it takes too much oxygen and energy. In fact, I find often that my moods are repressed by iron intake. I don't actually have as much ability to FEEL things as deeply. Or if I do feel them, to have the oxygen output to express them effectively.

I guess, my 'answers' for fellow sufferers could be summarized as encouragement. Maybe you have researched in circles too? Maybe you have found things that work short term and that matters! Even if it is undone later it still buys you time! My diet was one of these aspects. Maybe you need to ask for more support? Maybe the iron infusion will be the answer for you? Maybe you need to decide to NOT take the infusion? Regardless, I am putting this out there for you to know, even though it feels isolating, you are not alone. You are not the only one frustrated with the Catch 22's of Chronic illness. And keep sharing the small steps that make life better, because maybe like the Flintstones Vitamins- someone like me will try something that COULD work for them? (P.S. I checked with my Doctor first to ensure I wasn't overloading my vitamins.)

On and off, I get stronger. I have been on the treadmill for 7 weeks which is also a catch 22 as long term exercise depletes Ferritin according to multiple studies. But I love it and feel great for that 40 minutes every day. That matters to me. Also, in the mind, I think I am stronger than I was in previous years. I AM stronger in spite of and maybe because of this journey? It's a paradox. I'm both stronger and need to do what is best for myself, yet at the same time I need help from my support system, good medical professionals, and my friends. It's a mixture of both (which I will leave two songs for that portray both of these opposing emotions.)

May you find both your strength alone and strength within supports. Keep fighting fellow warrior. Also, rest well. Surround yourself with warm blankets, sip hot, cinnamon topped tea or cocoa, and indulge in your favourite happy books or shows. Try to balance your low energy with beauty. Balance your hardships with joy. Allow yourself to BE in your genuine walk.

POST EDIT: I also found this article...I don't know how legitimate it is but I will be researching it more and bringing it up with my regular doctor and functional health doctor: https://stopthethyroidmadness.com/ferritin/

POST UPDATE: Surprisingly, in my reading, on three different boards, I found that some women improved their Ferritin stores through the Flintstones Children's Vitamins with Iron. Which is weird because they only have 4mg of elemental iron as opposed to Ferramax which has 150 mgs in every pill. Yet these women swore their ferritin went up after quitting normal iron and taking Flintstones. I promptly ordered the Multi Vitamins and am going to use them in conjunction with my Ferramax. I figure that is worth a shot. That is basically the only answer I came across in my reading that was new to me. Which was depressing. Finally at 3 am, I realized I am only harming myself by reading any longer. It wasn't serving me well to concentrate on the queasy anxiety of the 'Catch 22.'I tried the Flintstone Vitamins ( the hard non gummy ones with iron ) and they are disgusting. They are as hard as rocks and have a bitter/ petroleum rubber aftertaste. Upon looking that aspect up - I found other people mentioning this aspect of the newer vitamins. I don't think I will be taking them now. Scratch that- I will be throwing my bottle out- I can't handle it.  It was worth a shot but something that tastes that chemical ish can not be good. I wish there would have been negative reviews when I bought them about this but I will leave one. Now I am going to concentrate on probiotic gut biome instead to see about absorbing my iron instead. That said, Maybe they do work? Maybe my taste buds are off or I am reacting differently? Anyway I am going to try a enteric coated probiotic with a minimum of 8 strains daily and increase my vegetables and fermented foods. I am also trying the AIP diet to lower inflammation.

Help - the Beatles https://www.youtube.com/watch?v=ZH840ZQfmbU ( I LOVE this video from Glee. This is one of my favourite episodes- see THIS post for why...but this song and the way they bring rivalry Glee clubs together for an epic proposal is so fun! Plus it has Supergirl and The Flash amongst the Glee clubbers.)

Help!- The BEATLES 

 "Help! I need somebody

Help! Not just anybody
Help! You know I need someone
Help!

(When) When I was younger (When I was young) so much younger than today
(I never need) I never needed anybody's help in any way
(Now) But now these days are gone (These days are gone) and I'm not so self assured
(And now I find) Now I find I've changed my mind, I've opened up the doors

Help me if you can, I'm feeling down
And I do appreciate you being 'round
Help me get my feet back on the ground
Won't you please, please help me?

(Now) And now my life has changed (My life has changed) in oh so many ways
(My independence) My independence seems to vanish in the haze
(But) But ev'ry now (Every now and then) and then I feel so insecure
(I know that I) I know that I just need you like I've never done before"



Stronger- Britney Spears "I'm stronger than yesterday..."