Tuesday, December 12, 2017

"This is Us" in our Moments "it's Kinda Complicated.'!The Day I had a Mini Break Down /meltdown in the Bookstore. But this Post is Mainly About Marriage ( And...Chronic Illness Humour? Maybe.)

My husband said he felt like Jack in this quote below from our current favourite TV series "This is Us." We tear up and relate to aspects of every episode. Jack loves his wife, like my husband loves me;
 "I just keep thinking about my wife and how I just want to get home to her, hang out with her, make sure she is ok. Which is crazy, because she's at her absolute worst right now. I mean, like, exorcist level bad. BUt I still don't want to escape her, or my future vomiting, crap riddled kids. I just, I want more time with them. I want to freeze time with them, so that I can get a little bit more."

My husband called me on his way home from work, "How you doing babe?" And I replied, "I don't know yet...I'm writing a blog post right now and I'm sure once I am done, my post will tell both you and I what my current state is." And he laughed.

I am sure I make quite a picture at the moment. I have my sunglasses on because of eye dilation and  I am sitting with Dill pickle chips on my right and M and M Caramels on my left. My fingers are rapidly typing on the keyboard and occasionally the clickety clack stops while I take another bite of food that surely isn't adding to my current conundrum but feels pretty darn good at the moment.

I kind of lost it today...and since my mini public breakdown I have made only poor decisions. The day started out ok. Therapy was excellent and my doctor and I discussed ways to make my gut biome better ( which I am currently sabotaging with junk food but I shall start tomorrow. Most people say that and don't mean it. I always mean it if I say it.) But tonight? Tonight I am eating the junk I usually only consume a few times a year... You know what? While I'm at it, I'm gonna tell my husband to pick up a gluten free pizza from the health food store. It is one of those nights.

I admit it. I felt the meltdown coming on a few weeks ago. Then I stepped on the scale last week and found out I hadn't lost a pound despite my 1200 calorie (feels like) starvation mode and everyday exercise for 8 weeks. My therapist brain stormed with me because he said that should not be happening, and he seemed to think it stems from my lack of probiotics in my system and fermented foods and less veggies than I should be consuming. Who knows? Despite my lack in an array in veggies, I otherwise eat healthy. I have food logs to prove it and I never cheat because that would be cheating myself! And when I do go off the health wagon, I will readily admit it...like tonight because tonight I give up...or I AM giving up for this evening that is.

My teeth have been worked on since August. I had to go to physiotherapy for my jaw because of all my dental work. I have a paranoia of eating and breaking a tooth. Since my last appointment a few weeks ago, I still can not chew on my one side. They can't figure out why but it feels like the few times I cracked my teeth. Searing pain happens with just a crumb on that side. This time they can't find the crack ( it could possibly be embedded in a filling but due to my extensive dental work they do not wish to go digging at the moment.) Every time I open my mouth I hurt. Each time I take a bite, I am reminded of my unresolved dental issues. My team has been amazing, but I am still here in this position, frustrated.

Add to that the current news from my Hematologist, my two month insomnia, and a few other unpleasant physical symptoms (some extremely frustrating and devastating that I will not speak of here) and I was already on the edge of that cliff of self failure. It's that precipice where one more step has a person falling into a wallowing abyss of, "Why can't I get it together? WHY do I try so hard to be healthy and end up this way? WHY??? WHY is it so much harder for me than my lucky peers?" But I stepped back from that cliff and gave myself a pep talk. I was doing good. I knew I had it good. People in my extended family are dealing with so much! Cmon' self! I can handle this right?

Then came today. I went for a routine eye dilatation exam. I was already feeling upset about my deeper wrinkles, pre-maturing grey hair, and other body issues that have resurfaced from my body falling apart. With chronic illness I have always struggled with feeling WAY older than my time. After thirty, aging speeds up a bit but my rate feels accelerated times ten. I have been proactive about this - finding moisturizers, creams, vitamins, minerals and dying my hair fun colours all the time to make up for the lack of my own body. But sometimes a girl feels down about it all. Especially a semi vain girl like me. I know I am not some beauty queen but I like to have a little bit of 'pretty' in my mix. I'll admit, it's a weakness of mine...

SO anyway, I tell him my right eye has been blurry and at night has trouble focusing. He says I have 20/20 vision with my glasses and very good vision without but he looks closely...and THEN, "hmmmm interesting... I shouldn't be surprised because often I end up saying at each appointment that you are too young to have what you have, but today seals the deal. You have a cataract. Normally these only happen to people on certain medications ( ones I am not on) or sometimes it is genetic but mostly it's a sign of aging although you are still too young for that.." And my brain latched on to "aging." It echoed in my head like a cartoon cavern. I'm sure my voice sounded horrified as I asked, "Will it go away?" To which he replied, "NO but the good news is, it is on your side and not in the direct vision. Maybe it could stay this same size for years and we will not have to do anything about it. If it grows you will have to have cataract surgery. Then you will see fine." CATARACT surgery! I'm in my early thirties. My grandmother had cataract surgery...and that is why her one eye often looks glinty.

My eyes are the one aspect of myself I absolutely love. They are grey but sometimes green or blue. They look witchy and have a weird depth. I often get compliments on them. I don't want my lens taken out and replaced with a piece of plastic. I already have the deep eye wrinkles and weird lines around my chipmunk cheeks because of my ridiculously huge grin. I already deal with skin pigmentation above my lip that looks like a stash and hair growth and hair loss and silver hairs. Of course my eyes have to rebel against me too. Of course.

There were many other moments leading up to my mini lose it session...like when I grabbed for my cell phone on the bedside table and a sliver which felt like the size of Texas lodged under my nail bed. I had a thick piece of particle board UNDER my nail, straight down, that I could not get out so I had to wait for my husband. It was SO painful. That was from grabbing my cell phone. Then I was telling my mother about my daughter having strep again when I choked on my own saliva and couldn't catch a proper breath for a good ten minutes. Then I scratched my GOOD eye with my make up bristle because I didn't blink in time. I WISH I was making this stuff up. I get clumsy when I am stressed.

But it all culminated to a moment when I found myself in our local bookstore, squinting at prices and asking the manager to read me prices and tell me colours as my eyes were the size of a Beenie Boos'. I had sunglasses on but still...She was busy but I had her helping me instead. Then I picked a furniture piece that has been on my "get list" forever but I could never splurge on, and I bought it. With my husband's bonus. Without even talking to him. WHILE I blabbed to her about my doctor not giving me fabulous news, but I didn't go into specifics so I am sure she thought I was dying, because she rubbed my arm sympathetically and murmured my name. In the back of my mind I knew I should probably do damage control and tell her I was having a mini nervous breakdown and things are not as bad as they sound, but honestly the world was literally blurry and my mind was also. SO I nodded, paid and said enough socially awkward phrases to make my teen daughter pull me away saying, "You are adorable...you crack me up mom and awwww my poor girl but maybe ....maybe we should go...On the plus side I think they really like you and think you are quirky and amusing." I couldn't really see on the drive home properly. The sunglasses helped but the world was wide and fuzzy...In hindsight I probably shouldn't have been driving. Things could have gone so much worse and I am lucky they did not.

On my way home my daughter put the phone on speaker to my husband. I yelled, "Um honey I am sorry. I am weak and I suck. ( I had already called him before about the cataract details freaking out to which he had a good chuckle and called me his 'little Anomaly.') I am afraid I just cracked up a bit at the bookstore. I might have said some weird things. But worst off, I spent your bonus. I am old and senile before my time, I am losing my looks AND I spent your money. I SUCK. " To which he started laughing boisterously which only spurred me on to say, "And it's a piece of furniture I have been wanting for awhile but we really could live without and I was going to use that money so wisely but something inside me just cracked because IT"S ALL DOWN HILL FROM HERE HON!" At that moment my voice turned into a hysterical yell and his laugh got even louder which made me smile a bit while I was hyperventilating ( at this point I was at my destination.) I talked over his laughter and phrases like, "Babe it's fine and oh honey I love you and you deserve all the happiness..." until what he was saying pushed it's way to the front of my hysterical brain. In the midst of, "I FAILED you. I am a big fat failure who spends your money recklessly and is becoming old before her time and will die and leave you alone to explore the big world in freedom...wait? What did you just say? I DESERVE all the happiness? I deserve this furniture? Why? Aren't you mad at me?" To which he soothingly laughed, "Babe, You DO deserve it. I don't know how you manage to be the anomaly that you are and if I didn't see it...but sweets you were there for me during my darkest hours. You have given more than you take and you deserve so much more. I'm not upset about the furniture. We will figure it out. I am glad you got something out of your day my love."

In that moment, my perspective came crashing back. I realized I have everything....but I am still keeping the book ladder. I walked with my purchase into my house and stared at it for awhile in my hallway. I reached out and touched the shelves, and soaked up the colour. I decided I would put it in it's place later. I sat down with the M and M's and chips we had in the back of the pantry, for such a time as this, and opened my computer to hash out the swirling thoughts and moments of the day. And that catches us up to now.

Phew. That feels better. Getting it all out there. Probably my quickest post to date, and I am sure it is quirkier than most of my writing due to my heightened emotional state, but it feels right. I am not better. I am not confident that I will be less of a mess tomorrow...but I DO know I am loved. My children keep hugging me and asking to see my eyes because I look like their Stuffies. They snapped a few photos with my sunglasses off, which I have not yet seen without blurry eyes, but if they are not too bad I will post one here. My husband just walked in the door with Pizza, and we have episodes of "This is Us" to binge watch. I think tonight is looking up. Maybe. I dunno but my stomach is slightly hurting from the junk and I suddenly feel exhausted.

At least I got a shelf out of the day, along with a purging of pent up emotions, and the knowledge that my husband and children have my back. I think that is something good. My health is kinda complicated in a devastating way sometimes, but so is my love with HIM in a more glorious sort of way...and I think that keeps me as balanced as I can be within the quirkiness of whom I am.

*"Some call it crazy, but I call it unique. I say you couldn't replicate it on a video screen. And I overheard them saying that we got a disease. But I only got you, and you only got me. There's a moment when I'm smiling, and I'm shiny, and gold. Or a bad, bad feeling creeping in my bones. And I like it that way, 'cause I'm weak in the knees. But when it's not half-amazing, well, it kinda looks bleak. Yeah, I only got you.And you only got me...I go from elevated,To downright devastated
(Oh, oh) We're going in, and out, but, baby, now we're all alright. We have our ups, and downs, but, baby, now we're all alright. We're burning hot, and cold, there's no mistaking, all alright. (Oh, oh). It's kinda complicated. There's a dictionary page dedicated to us. It says some days we're gonna shine, and some days we'll rust. But they left out the meaning, didn't give it a name. 'Cause they couldn't find a word for our kind of insane.Yeah, I only got you. And you only got me. No, I just can't explain it. So let me paraphrase it. It's kinda complicated. We're going in, and out, but, baby, now we're all alright. We have our ups, and downs, but, baby, now we're all alright. We're burning hot, and cold, there's no mistaking, all alright (Oh, oh) It's kinda complicated. It's kinda complicated. Simple, so antiquated (Oh, oh) I got a quick, quick fix, called a bottle of wine. I know we're pretty complex, it ain't always a breeze. Yeah, I only got youI got from frustrated. To feeling liberated.We're kinda complicated. We're going in, and out, but, baby, now we're all alright. We have our ups, and downs, but, baby, now we're all alright. We're burning hot, and cold, there's no mistaking, all alright. We're kinda complicated."- Scott Hellman Lyrics.
* https://www.youtube.com/watch?v=V0VFVim2j1E

Wednesday, December 6, 2017

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.

POST UPDATE: 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.

*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.*

Last night 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.

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.'

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/
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

(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..."

Saturday, December 2, 2017

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

Saturday, November 11, 2017

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

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

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

2.) Reading a variety of books regularly.

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

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

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

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

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

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

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

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

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

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

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

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

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

16.) Self Employment.

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

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

19.) Changing our lifestyle and taking out gluten and processed sugar. Health is really everything. You don't often meet dissatisfied people who eat well, exercise and are generally a balanced sort of healthy. Most people don't regret being fit ( if possible- as we know, I understand chronic illness restrictions) but in GENERAL, eating well has improved our lives. We have less sickness and flu bugs than most of our friends ( besides the chronic illness factor). Some of this is due to intentionally doing LESS out in the world, hermit status at times ect but a lot of it is due to the healthy spices, honey, good bacteria, fermented foods, greek yugort and delicious home baked treats we consume.

20.) Therapy. Therapy pre problems, during issues, and post problems. Therapy for marriage, therapy for the children, therapy for neurological differences, therapy for grief, therapy for PPD and PTSD...it is hugely beneficial to speak to a neutral party. Also to find ways to be the change you wish to see in the world by realizing you can only work on YOU. In all problems, therapy provided a way for me to grow, change or take a more balanced stance while still healing myself as well.

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

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

23.) Stepping out of cult like beliefs- oh the glorious love infused freedom!

24.) Challenging myself by listening and reading counter balancing material from intelligent, logical, clear minded sources. I noticed that most Christians I knew (which was most of my life context) surrounded themselves by like minded people and "challenged" themselves only in Biblical concepts. In our time in the faith, "Brain McLaren" was considered as leading people astray and anyone associated with his name was sanctioned. Which is interesting because he is STILL a Christian and many could not tolerate to even hear him out. I found this to be the height of ignorance. You do not have to agree with someone to see they have some good or logical points. But everything, including belief, seemed to be centered in emotion...and that emotion often could not be separated enough to have some healthy debate or counter balance in a compassionate, clear headed, calm manner.  Or WORSE faith was ABOUT debate, learning how to argue which defeats the point that it is "faith." We began listening to Brain McLaren as a counter balance to the Christianity we were currently following. We thought he was going to hell at first for the things he wrote...now, out of the faith, ironically, he is not as shocking as we originally thought. But he ended up teaching us lovely and kind thoughts about love.

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

I understand that some people can not handle thinking in opposites, however, we all should seek out some strong counter balancing opinions and literature from time to time to keep us honest...even if it's in small amounts. For instance, lately I have been listening to Stefan Molynuex. I needed the counterbalance to my liberalism because I started to see the flaw in some of my thinking patterns. It's no secret that I'm a little bit more freedom loving and tend to go to the realm of egalitarianism but there is a price to that, as in everything. I am aware always of where I stand. I try to search out intellectual and smart opponents of my thought patterns to keep my mind balanced and strong (like testing muscles with weights.) Thus entered Stefan Molynuex. While I don't agree with some of his opinions at times, I can see the merits in the logic. It has been good for me to rethink multiple stances even if sometimes I come back to previously held moral convictions. He is an Atheist with some conservative values, who is actually a fan of many aspects of Christianity in general, but he's logical and a moralist. Here is an an interview style that he comes across less aggressive in CLICK "Ruben Report Interview On Abusive Parents, Atheism, and 'Cult' Criticism.". He also has his own channel. Some of the videos that I enjoyed as morsels for thought were HERE "The Death of Kindness", HERE "Philosophy of Envy", HERE "Sorting Yourself Out"HERE "Leftist Fascism" and HERE "What pisses me Off About White Guilt" . Let me state again, part of the reason I listened to this guy WAS for the challenge. I do not hold many of his opinions YET, I am benefiting from some of his food for thought.

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

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

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

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

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

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

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

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

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

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

Song choice:Being Alive- Barbra Streisand:

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