"A Million Dreams" Lyrics and Life, The "Tightrope" of Marriage, INFJ's, and The House that We Built for the Rainy Days.

*For my actual thoughts ( and initial displeasure - I went in a skeptic and came out obsessed!) on "The Greatest Showman" see bottom of the post. All musical lyrics from this post are taken from the musical.*

~The Library pictured above was actually two rooms and a hallway before. Here it is pictured after we knocked the walls out and put in a new window from Habitat for Humanity~:

"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 that 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."- Lyrics to 'A Million Dreams'

When I was a little girl I would spend hours dreaming about my future home. I would wish I was a princess or a girl sequestered in a cottage. I would explore old building sites, little forests and gardens and imagine a world that felt like home. Often these dreams would feel more like my home than where I lived. Every night I would imagine places, things and my future husband in this world that I wished to make. I can recall walking through heritage parks or old homes and dreaming of what the inhabitants lives were like...then I would think about what I would wish for my life.

"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 one we're gonna make." - Lyrics to 'A Million Dreams'

'A Million Dreams' is the perfect 'INFJ' anthem. INFJ's dream of making the world a better place and to design safe places of mind and body. They are often the ones awake at night with a million dreams. Often I am awake, not out of desperation or gloomy thoughts, but with bright colours.

My favourite times alone at night are when I am re arranging a room in my home, decorating or planning in my head. I can hardly wait until the next day when I can put my dreams into reality. I wake up to notes like "Plant moved above shelf to maximize light" or "Witch should be near Cottage" or "Purple needs to be taken out of the scheme- it's too distracting." Most of my notes barely make sense to me in the morning but the dreaming is just as much fun as the action. Almost. I still prefer the dreams being grounded in reality. Having a futuristic yet concrete way of making dreams happen is more of a hallmark of an INFJ in comparison to an INFP type.

"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."- Lyrics to 'A Million Dreams'

(I should have taken the yellow aphid traps out before I took the picture.:)

I was often a collector of old things, vintage pieces, and concepts. With each film I watched from varying time periods, I would pick out lamps, lights, carpets, and create my style based on pieces I loved. My home is an eclectic mix of the late 1800's, early 1900's, Victorian era, Medieval era, 1930s, 1940's, 1950's, 1960's, 1970's and 1980's. I also incorporate all seasons, at all times of year, with the primary season taking centre stage. My sister was looking around once and remarked, "I don't know how you manage to pull off having four seasons at once in your home but it is surprisingly cohesive and doesn't drive me crazy." When we give tours ( because apparently our house is known for it's tours and we have people ask for them) the main compliment is along the lines of, "It's magic. I wish I could live here. It must be so much work to dust (It's not. One pleasurable hour a week.) but I feel like I am in a movie or another place. I feel at home even though it is not my home. It's just magic." The people who come to our home look around with stunned faces and often say it's hard to take it all in.

But this didn't just happen. It's been a dream activated for years. I married a man who followed my lead with my desires and basically crooned, "However big, however small, let me be part of it all...share your dreams with me. You may be right, you may be wrong...but say you'll bring me along to the world you see...to the world I close my eyes to see..." He trusted my dreams and entwined them with his. Together we built a beautiful home out of an ugly starter home because of these brightly coloured dreams. We rewrote our stars.

But people thought (and still do!) that we were crazy for spending so much time on our home. And for having project after project. Or for changing colours and bringing in more plants, more furniture, and more books. I learned design from Sara Susanka's "The Not so Big House."

We recently had a group tour and three people couldn't get over the fact that our house seemed to have tripled inside as opposed to what they saw outside. They thought we made a good use of space. I learned architectural planning from Ms. Susanka and my husband went to Journeyman school to build my dreams and have a job on the side. I explained what I wanted, used books to plan out rooms, lights, space, shelving ect...he knew correct measurements and how to make dreams into reality. I decorated and filled every room with things from far away and near. "Special things, I compile, each one there to make you smile, on a rainy day."

I have to swallow back tears thinking about the effort, joy, hardship and beauty that has gone into our home. My goal was to build a place where my children could thrive with sensory needs. But also a sheltered soul friend for myself and the one I loved. I have always wished to protect my husband the ways that I can. I knew I was good at creating safe places of the soul and body. I knew I could, if given the resources, make magic. Take a piece of the world and fill it with all things good.

At a time in which Minimalism was trendy and before plants became an Instagram craze, we DID seem crazy. Now we fit in rather well because maximalists, jungles inside and bohemian decor are accepted uses of space...but a decade ago they were not...I never want to be on trend with my home, but currently we fit a few, although we still break moulds. Which I like. Overall, it's about comfort and magic. Practicality mixed with imagination and sprinkled with loads of plant life.

"They can say, they can that we've gone crazy. They can say, They can say we've lost my mind. I don't care, I don't care if they call us crazy. Run away to a world that we design."- Lyrics 'A Million Dreams

We have actually run away to a world that we designed. Years ago we desperately wanted to move. We researched all sorts of cities, towns, and countries. We put our house up for sale and rent numerous times. Our basement was a slab of concrete and we were squished into three bedrooms upstairs. We disliked the community we lived in and felt like we didn't belong. But then we had an epiphany. We realized that we create the pockets of the world we live in. We worked hard to save up and renovate cheaply. We compiled materials and began slowly building a place that we could find magic in. We wanted a place where we could sequester ourselves away, make choices to buffer from the communities we found toxic, and rebuild both home and the people we surrounded ourselves with. We found home both as a concept and a tangible. It was the best decision my husband and I ever made for our family. And a million little dreams was all it took.

"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."- Lyrics to 'A Million Dreams'

"However big, However small, let me be part of it all. Share your dreams with me. You may be right, you may be wrong. But say that you'll bring me along...to the world you see. To the world I close my eyes to see. I close my eyes to see."- Lyrics to 'A Million Dreams'

This weekend I took down my Christmas Decor. I usually wait till February first due to seasonal depression. I find keeping my lit trees up longer also keeps hope up. However, today I arranged the rooms by colour (my primary mode of arrangement is colour balance) and snapped some photos. The beautiful part is that every single aspect of our home has meaning. We get rid of anything that is not useful or lovely to us. Many of the things scattered around are gifts, or parts of memories, or obsessions or interests of each person in the home. It's unique to us. No one else would be happy in it like we are, but they can enjoy the magic from time to time.

"Every night I lie in bed

The brightest colours fill my head..."

A million dreams is all it's gonna take....a million dreams for the one we're gonna make. For the world we're gonna make."- Lyrics 'A Million Dreams'

 I wanted the place I dwelt to have wonder. I dreamt of incorporating aspects of all the films, music, books and people who shaped me. I wanted heaven on earth. A slice of harmony in a world of chaos. A place to belong. A pocket that brings happiness. A canvas to create. A home of my own to shape, play with and work on. A place to smile, to dream, to love and to bring life...and maybe ease the pain in death...I wanted what I have. "You may be right, you may be wrong, but say you'll bring me along to the world you see..." Isn't that a beautiful phrase? I am so glad my husband wanted me to bring him along into my visions of the future.

The happiest memories I have to date, are the renovations on our home and the decorating involved with seasonal changes. I loved the children helping out and my husband working alongside of me or taking his turn beforehand. The music would be blasting while we would smile across the dusty room at each other. Then he would wink slyly at me, throw his tools down on the floor, toss me across his shoulder and run with me to another room while I screeched and the children giggled.

I remember walking into my son's constructed room and hearing my boys giggling as they plastered drywall and speckled each other...

 I see my daughter smiling giddily as she laid flooring because she knew she was working in the place she was going to dream...

I fondly recall my best friend and I painting my daughter's room. Her and I travel the world together in philosophy, health, sociology, psychology, and thought. We bring each other along to the worlds we close our eyes and see. We also share the same desire to make our world less chaotic by shaping our homes. "The brightest colours fill my head..."

I see my mother and father in law co creating with us. This was a huge moment in our relationship because we often would throw them for a loop. Yet they jumped on our crazy bandwagon and lent a hand in creating our place of being. My mother in law recently passed away so this memory means even more. Each time I walk into our closet and look at the Bewitched paint colour I smile and think of her goofing off whilst she painted. "The brightest colours fill my head..."

I can see other family members, my father, mother, grandparents and friends, all sharing moments and creating with us.

 I can see my daughter, barefooted, moping up the last bits of dust on our finished library. The sun was warming up the room to the point that it felt like summer when it was in the midst of winter. The room was empty and I looked up from my last minute paint touch ups. She looked at me at the same time and we both smiled. Time stood still and I quickly grabbed my iphone to capture her again so I could further ingrain the moment into my memory. "A million dreams..."

 Most of all, I see my husband, at his prime, when we both had energy...before unexpected death, disease and the world weariness set in. Before we walked the tightrope. I see him working on each aspect of the house...to make me smile, laugh and feel protected. Many of his 'firsts' were on our house; tiling, drywalling, ect. but it doesn't show because he built every bit with his perfectionist tendencies.
"But I'd follow you to the great unknown. Off to the world we call our own. Hand in my hand and we promised to never let go. We're walking the tightrope. High in the sky, we can see the whole world down below. We are walking the tightrope..."- 'Tightrope' lyrics

He built me the world which I envisioned. He made my dreams a reality in the ways we could afford. Now when I lie awake at night, he is part of all the visions and reflections. He makes the world with me. It's ours together. "Never sure, never know how far we could fall. But it's all an adventure that comes with a breathtaking view. Walking the tightrope with you. Ooo, ooo, ooo, oooo with you..." "Tightrope Lyrics."

During "The Greatest Showman" I cried during the song "Tightrope" because it felt like it encompassed the last couple years in our journey. "Mountains and valleys, and all that will come in between, desert and ocean. You pull me in and together we're lost in a dream, always in motion, so I'll risk it all just to be with you. And I risk it all for this life we CHOOSE."- 'Tightrope' lyrics

"Hand in my hand and you promised to never let go, We're walking the tightrope. High in the sky we can see the whole world down below. We're walking the tightrope. Never sure, Will you catch me if I should fall? Well, it's all an adventure that comes with a breathtaking view...Walking a tightrope with you, oooh, ooo, ooo...with you."- 'Tightrope' lyrics

A World that We Design:

"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."- Lyrics to 'A Million Dreams'

*At first I wasn't a huge fan of "The Greatest Showman" backstory. I knew that PT Barnum actually was a generally horrid person who exploited the outcasts of society. He was a liar and thief. I had to suspend reality and pretend that this was a whole new show and then I enjoyed it. I liked the whimsy. At first I thought that it wasn't epic like La La Land ( but it's incorporated into my life more effortlessly than La La Land) but with each viewing I like it more. So maybe it is epic? I find I can sing more of the songs on a day to day basis. I also like how it spoke to many who feel alone/outcasted and that the writers intentionally went for an inspirational, liberating story instead of bleak. I probably would not have paid to watch the true to life version. I have incredibly high standards for musicals. The cinematography was gorgeous.  It's time for some lighthearted fun...Most musicals are escapism or provide an outlet for emotion. Each time I watch it I fall in love with it more. My husband said it was the best film he had seen this year which shocked me. He even liked it better than the very funny Jumanji! 'Wonder' was my Initial favourite this year but "The Greatest Showman" has gradually won that space. All three of my children loved it and wanted to own it when it comes out. I also dislike Circuses, and always have, so that probably did not help my initial reaction but the songs, acting and sequences were gorgeous. The songs "Tightrope" along with "Rewrite the Stars" and "A Million Dreams" had me teary and were beautiful because they directly applied to my life.

Song choice:- A Million Dreams: https://www.youtube.com/watch?v=pSQk-4fddDI

Tightrope: https://www.youtube.com/watch?v=He5NctQPXK8


Re Write the Stars:https://www.youtube.com/watch?v=gdjR2lvIfJ4

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..."

When a 9 Of Ferritin Drops down to a 7. Anemia. Young Sheldon. Autistic Fears. Purple Hair. Timberlake. Disliking Outside and Being on the Offence of Life. (It all ties in.)

*This is a follow up to my last Anemia/ Ferritin post for anyone with the same issues. Otherwise skip if you wish to the 3 or 4th paragraph for Autistic thoughts or below that for thoughts on the Outdoors enforced in the media lately for 'healthy people' and how that does not work for a slight minority ( speaking from experience.)*

It is month two of 'Operation Aggressive Iron' and my Ferritin dropped back down to 7. Which isn't as bad as the point two I started out with. I told my therapist at my last appointment, "I think it has dropped a little, not like before but enough to feel slightly less motivated for life again." And I was right. It is amazing what two counts can do to a person's well being.

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.

My husband will chuckle often during Young Sheldon and say, "Besides the math, he is you and our eldest son. It is uncanny." Tonight I asked him, "Ok seriously?? I can relate. A LOT. Besides the math. I am transported back to a lot of moments in childhood when I watch Sheldon but how do you see it? I get I am quirky and weird and apparently hilarious to you often, but are my differences to the majority really THAT apparent? I know in my heart how much I can relate to quirkiness but I thought maybe a lot of it was in my head?" To which he snuggled in with a laugh and replied, "Oh no honey. You are one of a kind and I wouldn't have it any other way but 'Young Sheldon' does OFTEN resemble you. I can definitely see it, even now, with all your coping strategies. You normalize but yet even in normalizing you are unique. And at home your massive differences to the average people I know are apparent and I LOVE that about you. You light up life." Then he fell asleep and I was left stimming in my own thoughts which turned into this post.

It's baffling. I think I hide it so well sometimes. Growing up, the vulnerability of who I am required me to develop a hard outer shell of chameleon ability. At home I shed that to varying degrees, but still I think I am more appropriate out of necessity (and it being grilled into me at a young age) and more accommodating to people than the "average socially capable" person. So WHY does my husband still relate me to Sheldon? I get it on one level, and on another I am genuinely confused.

Add to my confusion the mongrel of chronic illness and I end up feeling a little lost. I resent my blood work results. Especially considering the efforts I go to. YET, I also feel gratitude for what I have, the bits that have improved and the fact that I get to move on the treadmill now. Granted, I am on week seven of counting calories (and going on the treadmill each day for 40 minutes at a fast pace) and I have not lost one pound. Not one. I would quit but I honestly love my time moving. It's ME time. It gets me out of my head. The physicality feels like I am going somewhere when I am not truly going anywhere. AND I don't have to go outside. It's fantastic. Thus, I will not quit, but I have quit hoping that my clothes will feel looser. The doctor told me it is not time to think on such things.

So I dyed my hair again. I tried purple. It washed out rather fast but I needed something drastic. I thought it would make me feel different. In a way it did. Colour can completely change a person's outlook. However, my tiredness did not disappear, even though my purple hair seemed to sing to me Troll's drugged up, happy anthems (CLICK) whenever I looked in the mirror. "I've got this feeling, inside my bones, it goes electric wavy when I turn it on...Got that sunshine in my pocket, got that good soul in my feet..." (Justin Timberlake*) I digress. It's an invisible illness for a reason. As I have mentioned in previous posts, my pictures can tell a completely different story. Interestingly enough the next lyrics in that song are, "I feel that hot blood in my body when it drops....ooooooo."

I CAN feel the hot blood in my body when the Ferritin drops. Ooooo. *Jazz hands.*

Sigh. It is not as fun as the song makes it sound. Despite my sometimes valiant efforts to make it so.

Yet, otherwise, life truly has many moments. I intend to take the offence in what I can instead of the defence. In friendships, in the health I CAN control, in home, in finances, in education ect. I realize that it is a paradox of both circumstances happening to me and me making circumstances happen. When I can, I try to make the changes within and without MATTER. By taking the offence in my life I choose boundaries mixed with generosity. I choose the treadmill and the health I can by eating well even without beautiful results. I CHOOSE LIFE when I feel like death. I wish to be aggressively pursuing all that is good and beautiful. And I am determined to remember that I CAN do this in mind, spirit and body.

Which means allowing myself to loathe outdoor activity. I used to feel guilty because I heard all the research about the 'joys of outside.' Plus, the entire granola movement ( which mostly I like) didn't improve my guilt. 'Build your own garden because the dirt is good for you' plus 'raise your own chickens' plus 'work outside' plus 'running builds community' plus 'yada yada yada' equalled me feeling inferior often. UNTIL I realized... Most of that IS most likely true. For the average, normal person. I am not average nor normal. This fact is not better nor worse it JUST IS.

I am happy for my dirt loving, organically minded, community minded, running friends who find fulfillment and joy from their experiences. I have tried it all. Truly I have. I hated the bugs, the sun beating down on me, the wind and subsequent earaches, the potential tetanus, the draining sounds from other people, the pets barking, the people chit chatting, being interrupted on a walk...it all added up to ulcer stress. I LOVE that I no longer have to walk outside to get exercise. I will choose driving for my errands every day and make up for it on the treadmill. I don't care if it is the opposite of what one of my favourite money gurus ( Mr. Money Moustache) says to do. I live in crazy weather conditions plus I have a chronic illness and limited energy. It's not an excuse...it's how I adapt. I also have sensory overload. My time is precious to me. I will choose to drive to appointments so I can have more time with my children. Yes, I could walk with my children and do both, but that always made me snap at them because I was overloaded, tired and cranky. It also made me rely on them more because I used my energy up walking, battling the elements and could not do much at home. Now I can walk at home and then choose to go outside with my family when I absolutely want to instead of when I feel I HAVE to. When I do go outside it is now mostly for pleasure. What a relief. I can tolerate outdoors for small time frames but I will not be found around a campfire for enjoyment. It not only makes me queasy with the smell but it makes me feel like I am suffocating. If the conversation is deep, I may sacrifice this occasionally but I pay for it later. But that is what I mean by offence. I CHOOSE to pay for it in those circumstances so I am not playing defence later.

Two of my children take after me. I used to force them to play outside for their "benefit." There is a part of the pilot in 'Young Sheldon' where he is required to go outdoors. This foray out the front door is shown from Sheldon's perspective as scary and uninviting. The cars are painfully loud, the noises are scary, the swing is crazily showing gravity... He would rather read in the library about gravity or make up new algorithms or controlled experiments about gravity without having to witness it on the playground. When did we start worshipping one way of being over another?

Yes, nature can be soothing and nurturing. I am an INFJ who ironically needs nature to survive. But do you know how I create my balance? I learned to make my home into a sanctuary. I own 98 plants. INSIDE. I have an indoor mini garden. I have southern facing windows full of sunshine and the witness of elements. I stargaze and sit safely on my deck to enjoy sunshine. Occasionally I venture out on perfect weather days. I make it work. I play offence. Some view this as spoiled. I know I am lucky to have these circumstances. But I also chose them suited to who I am, what I need, and balance that with those around me to varying degrees. Outside is terrifyingly loud, obnoxious and out of control. Nature is unpredictable and vicious but also beautiful from a distance but my adventures are of the mind .... not the body. Who is to say that is less or more? It just is.

I sometimes force my outdoor hating children outdoors. I do believe they have to experience it for themselves and make up their own minds once exposed enough to see the merits and downsides. However, as long as they are getting physical activity indoors, having sun exposure or a sun lamp and taking vitamin D, and caring for the indoor plants, I now realize that each of them has varied gifts. We need our Sheldon's of the world just like we need our Penny's. (These are both the grown up versions of Characters in the show 'The Big Bang Theory which is about adult Sheldon's quirky astrophysicist life. Young Sheldon is about him growing up in Texas as a quirky atheist, non typical child.) Most people find Sheldon selfish and annoying. Both my husband, children and I find him giving and refreshing. Most people find Penny giving and funny, our entire family first found her selfish and petty. Then we eventually discussed and saw her merits and realized it truly is all perspective and understanding.

With my Ferritin struggle, with perspective, I have come to be thankful for even it. However I am lacking the understanding to WHY this is happening which furthers my struggle with it. I loathe it and I love my conditions of life. By having weird blood I constantly am on a roller coaster of health, wellness and energy limitations. Sometimes I have it all and sometimes barely anything at all. But in all stages I wish to live on the offence. I wish to take the health I CAN, let go of what I can not, and make the changes that matter. My choices will differ from my peers. I see validity in each way of doing things. But there are a few fundamentals which make life great. Sometimes they are the hard things. Birthing babies was hard and caring for them hasn't always been a picnic either but it was massively fulfilling. If I can frame my other struggles by this standard to pursue excellence, maybe, just maybe, I can own every second that this life can give?

It won't be easy. It will have struggles. I will most likely be bloody exhausted (lame pun intended) but what if that IS my new normal? Why would I judge myself from an expectation of 'normal' or 'should be'? Why am I looking in the mirror and dying ( or crying) a little from what I see? Why can I not instead see what my children see? Why can't I soak in the words my son, who is mini me, expresses while he looks at me makeup less and laughing and solemnly says, " You are always so pretty. I always visualize you as an older sister, ya know?"

My laugh stopped and I teared up when he said that, because often I think he does not like me very much...and then, suddenly he is gushing in his stoic way and complimenting me by saying I am on his level. His words were said to me last week and I still run over them every day in my head ...because this blog post? It's really about me pep talking myself into the offence. I was playing defence the last few weeks.

I lost.

So did my team.

It's time to switch tactics.

Song choice: *Can't Stop the Feeling- Justin Timberlake

Crazy Train- Ozzy Osbourne