facebook, Social Media, That's my PKU life

Do what you love.

Posted on by Amanda Horner

I am not a professional blogger. I am not even that good. I cant spell well and I make a lot of typo’s. Even when I use spell check it does not always pick up my grammar  mistakes, run on sentences, wrong punctuation or lower case vs upper case mistakes.

I dont charge for content, I dont ask subscribers to pay to follow my blog. I do not advertise. I do not sell advertising. I dont have any sponsors.  I do not know how to do any of that or understand how it works. Much of it I would not want to do anyways.

That being said, I have been writing this blog for nearly 6 years. There have been many highs and many lows. I can go a very long time in between posts. I think I wrote maybe a couple blog post in all over 2017. I have already written more then that in the last few weeks .

I stop for a while, I pick it back up again.

I loose subscribers and followers. You cant please everyone.

I change the look and feel and sometimes the name.

The blog gets a make over when the mood strikes me.

I have written blogs on several platforms over the years, many I stop or give up or delete. This blog I have invested way to much into to delete it and loose all my content. I did have to delete my facebook page ” Amanda Cosburn- PKU Adult and Advocate” with over 800 followers because of a few bad people trying to make my life miserable . But I came back.

I have been PKU Tri-Unity  , Project PKU, PKU Proud, My PKU life,  PKU Amanda and many other names.

I have had, MSN, Yahoo, Tumblr, Hi-5 , Live journal, dear diary, friendster,  myspace, facebook, twitter, pinterest, instagram, google plus and various other social media platforms.

I have memberships and profiles on pku.com pkuboard.info and many others. I subscribe to the listereve and the pku news newsletter.

I have had various websites over the years where I have attempted to have my own pku website or recipe spot.

I created the First groups for PKU on most social media, I created the very first PKU group on facebook as soon as i joined back in 2005.  There was no other groups. Now I admin multiple groups and our first group has over 6000 members world wide.

So why do I keep doing it?

Why do I share so much of my life online?

I didnt meet anyone else like me with PKU till I was over 13.  It was lonely. I have always had my ups and downs. I have struggled and  I have done well.

I figured if by sharing my story, one more person knew what PKU was that would be a positive.

If by sharing my thoughts, feelings, struggles, triumphs and my daily PKU life that someone out there might not feel so alone.  Someone might learn from my struggles and avoid them. That it might help a teen out there like me who struggled, or a PKU women who wants to be a mom. To the person or parent struggling to know they are not alone.

I am not a brand. I am not trying to sell anything.

I am just me. Doing what I love, to help others and to help myself. I write because I like to not because im good at it.

I write out my thoughts to help me think through them and learn from them. I talk things out and I journal. I record so I dont forget and so others have acess.

Anytime someone writes me to say they relate, or they understand it makes it all worth it.

I just want to help.

When I share my blog posts on facebook it is not to get more followers, its because i have a space to write it out in full and long so if anyone wants to read it I dont have to repeat it or summarize it. I share it to start conversations. So maybe I can connect with someone else who is like me , or to help someone else.

I share it reach out , start a conversation or debate. To share education, information, events, latest news and more.

I do it for you and for me. I do it because I love it and it has helped me grow.

I hope it has helped , I know it has helped. I hope I can continue, even if people stop reading.

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Madelyn, MPKU Journey!, That's my PKU life

1 vs 2

Posted on by Amanda Horner

How do you know? How do you decide? when your ready or not for that second baby.

No I am not pregnant. We have no plans to have more children. But There is a part of me that constantly goes back and forth. Sometimes I think it would be nice for M to have siblings. Then other days I worry. I worry a lot.

How would it change things? Our family works so well.  M and I have such an amazing and close bond.  She is my whole world. I cannot imagine sharing my attention and focus away from her.  not being able to give her my 100 % .  I know how time consuming and how much attention newborns need.  What if I cant be there for her to? What if she pulls away from me because Its not the same , or she gets jealous? Or she wont understand?  Will I ever get our closeness back if i loose it?

What if  it makes her unhappy?  what if she never adjusts to sharing her parents?   what if we wait to long and the adjustment is just to hard?

When is a good age ? Is there such thing as a good age gap between children?  Am I already to late? Have we waited to long? Am I running out of time?

I have always been told to not have children more then 3 years apart because it makes it so much harder on the first born. Well  M will be 3 in march. Does that mean if we cant decide or have a baby in the next year that we are done and its to late?

I dont really want to have baby 4 years apart or after 34 . I am to scared of the risks that come as we get older plus the added risk of PKU.  I am 32 right now.

We are so not on the same page cole and I about if we should.

Some days i am fully content to be 1 and done.  I cant imagine loving another child as much as I love her. Shes prefect! How can you match perfect a second time!?? nothing and no one can be as good as her.

I wanted her for years before she became. I prayed for her, I wished for her. Every superstition. On stars, If I saw the clock change to 11:11 , on falling stars, on anything that brought good luck. I prayed to god and to my grandma in heaven to send me one happy healthy beautiful baby girl.  she is the answer to all my prayers. I never thought it would be possible for us to even have one baby. She is my miracle.  Am I pushing it for asking for a second?

What if the pregnancy is harder? what If I am more nauseated and more sick? What if I cant keep my food and formula down? what if my levels arent stable? What if its unplanned again but I dont catch it in time?  What if i gain to much weight? what if i end up with diabetes this time? what if its a difficult delivery this time? What if something is wrong with the baby? Or the baby is born sick or has colic? Will we manage? can we make it? Are we strong enough?

Being pregnant with M was an amazing experiance. I was so lucky. I really treasured every moment because I never thought i would get the chance. I loved learning about her development every week, tracking the progress , watching my belly grow. Feeling her grow and move and kick and roll.  It was both the hardest thing I ever done but also the most amazing. The 3 times a week blood dots where hard, driving them up to the hospital all year round. The large wack of blood work every trimester. The traveling to Vancouver every trimester, the weighing, tracking and recording of every single thing i touched or put into my mouth. I worked so incredibly hard.  Never have I worked harder. I did everything 100 % in my power to make sure my baby had the best chance and the best start at life. What If i cant work that hard again? what if i was only able to fully dedicate myself to her was because i wanted her so bad? what if wanting another less some how effects me subconsciously and I dont work as hard?

I had the best delivery experiance with M that i could have ever expected. I was able to deliver naturally . I did need the drugs in the end and I am so glad I took the epidural. 36 hours is a looooong time lol.  But then she was here, she was ours,  she was mine. I will never ever forget the feeling when they placed her on my chest for the very first time. my daughter. My first real good look at her. I looked her all over and touched every part of her to make her real, that she was here and she was healthy. My heart grew so much i felt it would burst.  I still feel like that so often. Watching her grow and learn and play. She is amazing. She has changed so much. She is playing pretend now and making her toys talk, she is imagining. She loves to paint and play tea party. She loves our dog copper. And she talks alot! for 2.5 she says alot of words and talks alot. She can carry a full conversation. she is so independent and strong willed but she still wants to cuddle and be loved and snuggles.  She still reaches for mama and needs me and asks for me. I am so proud of her , their are not enough words. I have never know a love like this. I am extremely protective and proud. I finally get why they say “mama bear”

Can i feel like this again? Can I be this twice?  Do i have enough room  in my heart? because seriously it already feels soo full , to every corner of my soul.

near the end of my pregnancy with M I thought , wow I can so do this again. my body is made for this.  this was almost easy. I started to be able to picture 2 children, not just one. I let myself dream . I would never have more then 2. Coming from a family of 5 and being the oldest , as well as watching all of my friends have 2 or 3 or 4 or more I know 2 is my number. Id be done after 2 . Tie my tubes done.

Even after she was born for the first few months I was like yup I can see 2 kids running around our home.

Then my love grew and grew and grew for M and my anxiety too. I didnt feel like I had anymore room. The fear I have for her , keeping her safe and healthy is a full time job. Making sure shes happy and her needs are met and challenged. That I am giving her my best. Then the fear and anxiety of having another and changing our perfect little world.

so I ask again. how do you know ? how do you other moms know when you want more? did you always know? did you change your mind? what changed your mind? How do you cope?

I have only recently started entertaining the idea. I see mommies from mommy group that i joined having a second or third already. Dealing with a newborn and a toddler. Seeing their photos their toddler and the newborn bonding and loving each other . I dont want M to be lonely. I know I run a daycare and she has cousins and a large extended family, but their is something special about a sibling , specially when they are close in age. I dont have a very close bond with most of my siblings. Large age gaps, different dads and distance between where we live. We where closer before I moved away.  they are mostly teenagers now and I am in my 30s with a family of my own. I think the larger age gap has been the toughest gap to over come so thats why I am feeling the pressure to make a decision soon. I dont want to wait to long.

But I dont feel 100 % ready yet and of course Cole is way far away from even considering it. But If I can sort through my own feelings maybe we can come together and talk and make a plan.  But I am so worried about running out of time now. Madelyn will be 3 in march so if we want to have another baby before she turns 4 and I turn 34 we dont have alot of time.  I always said if we decide to have another it will be planned by both of us and i will do the pre conception diet this time around. Finding out at nearly 4 weeks with M added so much stress until the anatomy scan at 13 weeks i was constantly worried if i got my levels down i time. I dont want that worry again.  Also M was not planned. she was a surprise. For us both. Cole had always said he didn’t want kids at all so i was terrified of how he would react but he was amazing from the very first moment on and has been every step of the way. He is the most amazing daddy and you can see how much they love each other. He says he wouldn’t change it for the world.

He has his own reasons for not wanting another, the biggest being my PKU. We where lucky, what if we arent again? that is a big risk. My health is a big risk.  But I did do it. so we know I can.

I just keep having this argument in my head over and over again. Around and round with no answer in sight. When I look into the future sometimes I can see myself and cole with 2 beautiful daughters who have this close sisterly bond.Other times I see only madelyn.

I have been having alot of dreams lately about being pregnant again. They use to scare me but now they dont as much.  Sometimes I see sharing the special moments with M , having her kiss my belly, or feel her sibling move, having family maternity photos, Seeing her hold a baby sister in the hospital room kissing their forehead.  Sometimes I feel all the feelings, fear and excitement. I wake up with the feelings lingering through out my day,

I never picture a boy or a brother lol because the thought of having a boy terrifies me lol

I think its weighing heavily on my mind lately cause I have these 2 day care girls in my care, who also happen to be my best friends daughters. Madelyn has grown up with both of them.  They are her best friends to. She calls their mom aunty and the girls call me aunty.  They are apart of our family.  They are 3 and 1 . so M is 2 right in between , she has watched the youngest grow up from birth. the older one who is 3 calls the younger one her sister all the time and M called her sister once to and i corrected her and i told her she didn’t have a sister or a brother because mommy would have to have another baby but the girls where her best friends.  she said ” ok mommy i want a brother then” She totally didn’t understand what she was saying cause she dosent know what a brother is but it just shocked me so much. Maybe it would be nice for her? she is such a social child. I dont want to deprive her of that.  I just wish i could know for sure if she would adjust ok or not? Would she still be as happy?

can we handle the sleep deprivation again. ?  can we make it through the newborn phase again? it was tough and it did change cole and my relationship a little. Can I manage a newborn? a toddler and a daycare? Can we afford it? Will our relationship survive?  there is just so many what ifs to help decide .  Just how much will it change? Can I even begin to understand ? will i regret the changes? Will i regret rocking the boat?

Our life is pretty manageable and happy right now. Why should we change that? as cole says, why change something that works so well?

not to mention we arent actually married and my children have a different last name then me. that bothers the fuck out of me so much. My last name is from my step dad. Its not even my last name. I dont want to carry it forever. I hate having to show ID when i book appts for M and I or i take her somewhere health related.   Cole and I have been together 13 years so we are practically married, but at the same time we are not. It is looking like we never will be? Can i be ok with that and have another baby i wont share a name with?

I dont know what to do. I dont know how to decide. I had hoped by sharing this and writing it all out, that maybe it would give me some clarity or answer any of my questions but i am still just as confused.  I think I want another, at least a part of me. It would be nice to experience another pregnancy and knowing it is the last. It would be nice to see M bond with a sibling and grow up together? At least i think it would? will it? maybe?

Maybe only god can know and he will decide for us if its in our path.  I just wish I had some sort of sign or clue.

 

 

 

 

 

 

 

 

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That's my PKU life

Chronic pain

Posted on by Amanda Horner

10 year ago this past July, I was in a car accident. I was hit by a car while walking my bike to a cross walk . I had just started a new job and it was my first day. I was heading home.  I had just been using my bike again for a couple weeks as I had Reconstructive  knee surgery that march.   I am kind of accident prone.

I hurt my knee by tripping and twisting my LEFT ankle at my 2nd job when I was 18 year old.  I continued to work as a cashier on my sprained twisted ankle for weeks and was limping and compensating for it. I ended up dislocating my  LEFT knee repeatedly and tearing all the ligaments.  My knee cap ended up floating and would actually move around my whole knee. anytime i put a lot of pressure on it or limp or put to much weight on it I would dislocate it.  I had twisted that ankle in December 2006, then the following march 2007 was when my knee went. I had my knee surgery in march 2008. It was a long recovery because it had gotten infected and i was not able to afford physical therapy.

The day I was hit by the car I had been just able to get my knee to bend enough to go around on the bike for about a week.

The car was turning out of a store and didn’t see me.   They hit me on my LEFT side just around my upper thigh and knee. I went down and landed on my bike. My pelvic floor was shifted and multiple disks where perforated in my back. It changed my life .   struggled with years !!

I ended up struggling for many years with statica pain, nerve pain, soft tissue damage and chronic pain since.  From 2009 to 2012 I went to massage, and physio weekly. I had flare ups and was in pain daily. I wore a back brace from 2009 to 2010 while I was in school for Licensed Practical Nurse Diploma.  Then through out I have had to be very careful with my movements and activity as its very easy to  injure it again.

In January 2010 just as I was about to finish my last nursing practicum I was showering a large patient . She was an angle lift transfer. I had her on a commode , and we had toileted her and showered here and i wheeled her towards the counter to dry her off and the commode broke. The patient fell and I caught her with my arms and shoulders and tried to hold her weight to prevent her from hitting her head on the counter. she would have hit her head at the temple and who knows what damage that would have done.  In the save , I tore my LEFT rotator cuff , skaling muscles and traps.

In 2011 while I was working as a nurse in long term care, I was moving my medication cart from the nurses station to the hall way when they entire cart tipped. I tired to catch it form spilling out all the medications and I stress fractured my back and preferated more disks. I was off work indefinitely. I went through a chronic pain clinic and therapy and recovery for 6 months after that.  From then on I only worked casually as my back just could not handle any more stress or injuries.

At this point I would have such bad days that I could not get up or walk or move very much at all. I was on alot of pain medications and nerve medications . I was deep into my depression and anxiety and had gained alot of weight.

This car accident that took my back out first was a catalyst and it effected everything from that moment on.  I was told if id lucky if i was still walking in 5 to 10y ears much less still working as a nurse.  The pain was crippling me and my body was a burden.

In 2012 we moved to kamloops and the climate really helped my back pain and chronic pain.  I was finally able to work more consistently and live a bit more normal life.  The pain has gotten better.  I have many normal days.  I even have some pain free days now and the pain free days have gotten better and stronger all the time.

As you can see I have capitalized LEFT on my posts .  All my injuries have been on my left side.  Really weakening my left side and making injuries much more likely.

Living with Chronic pain impacts everything so much.  To be in constant pain is exhausting.  I wake up so stiff and sore . By the end of the day I feel so i swollen and inflamed. I can barely weight bear and need help getting to and from my room.  if I stand for to long my hips and legs seize up.   Simple things like walking to long or doing anything to long makes me feel like my muscles are tearing and ripping . I always feel like I have strained muscles or torn muscles.

Today I was a vendor at a craft fair as i am also a consultant for usborne books at home , so i was on my feel from 830 am till 230 pm. By the time I got home I was so sore I just had to go lie down . I ended up falling asleep for 2 and a half hours.  I cancel a lot of plans and back out of things last minute because I am in to much pain.

I  use to try to go to the gym to work out and loose weight, but weight lifting makes it feels like my muscles are ripping.

I  try to be more active and make healthy habits like going for walks, learning yoga, going swimming, and I do really well for a while but then after some time I give up. If i do to much or tweak something it sets me back for weeks or even months and then its so hard to get going again. I have an all or nothing attitude so i tend to go really hard and try really hard and push really hard, but then i get hurt and i set back all my progress. It is always feeling like one step forward 2 steps back. I never feel like I am getting any where or making any true progress. It is so very discouraging.

This has been a 10 year battle and over the 10 years of ups and downs ,  I have struggled with depression and anxiety. I have lost jobs , been an unreliable employee, have been dependent on cole for so long and so much. After the car accident i was terrified to learn to drive and refused to get my new drivers license until we moved to kamloops.   My panic attacks started after the car accident.  I was so scared to go anywhere on my own.   From 2008 to 2009 I didn’t even leave my house on my own to go anywhere. I had to wait for cole to come home and take me anywhere if i needed to go anywhere.  The anxiety crippled me. The weight gain that came from being inactive during recovery and the depression that followed made everything worse to.

It was a very long and dark time. I have come a very long way. But I still have days where I struggle. I really feel like the inflammation has gotten worse. I feel it in all my joints and my knees, my hands, my feet, my hips and my low back. Since having madelyn i am unable to go to therapy as often and only really get a massage once every few months.  i recently saw my doctor again as i was worried about Rheumatoid arthritis but my tests came back fine. Only my CK muscle enzymes where elevated. This is indicative of muscle damage from trauma, and god knows I have had my share of that.  I know I will never be completely pain free, but I am do my best to keep going and enjoying my life.

Yoga , walking and swimming do help when i can go and keep it up. When i am in pain i tend to shut down and not want to do anything,. my doctor tells me this is when i need to go the most but the pain holds me back so much why would i want to move or do anything ?

The weather really does have an impact on pain,. its not just a myth. I really notice a difference when it gets damp or cold. I can tell even when we are traveling to Victoria the closer we get to the lower main land the more my body reacts. I can be asleep in the truck and i will wake up with a spasm or muscle twitch or pain and it will always be just outside hope when even the trees around us are changing from our dry dessert atmosphere to more of the lower mainland rain forest that i grew up with.

My pain is what made me get into essential oils because i was am tried of pumping my body with pain killers. I have had to take myself to emergency during flare ups for a shot of morphine or valumn. I have been pain med free though since 2015.  Now I just try to manage day to day by being careful and not pushing myself to hard, being aware of my limits and some sort of activity , with my essential oils, Tylenol and Advil.

At night after dinner when we are sitting down to watch tv i sit with my legs elevated or with the couch in a reclined position. I really need to remember to drink more water to to help flush my muscles and lactic acid . Water really helps with inflammation. I dont drink nearly enough, I never remember until bed time when i realized i am super thirsty then i have to drink and ill be up all night peeing lol.

I was so worried about how the preferated disks in my back and my pain would be during my pregnancy in 2015 and i was worried about how it would effect my delivery and if i would be able to get an epidural. My pain was actually a lot better and i was able to delivery naturally with an epidural. Pregnancy hormones relax the muscles to the pain and tightness and stiffness was actually bareble. I was injured at work when i was 22 weeks pregnant so i was off work early on medical leave and had physio until i was about 8 months pregnant.

As I sit here, my neck is seizing up , I have a horrible headache , my fingers and my joints are swollen. it hurts to type. Their is pain right up to my elbows.  My shoulders are swollen, and my low back is hurting to sit. I really prefer to lie down when I am in pain. As soon as I finish typing this i will be going for water and a Tylenol and to lie on the couch. My family is currently watching the 2nd harry potter movie.

I just wanted to share because I have heard so many tell me I am to young to be in pain or to be so inactive. I have been judged for parking close to a store or having to sit down when standing .  Needing a chair or to sit against a wall.  Not all illnesses are visible . just because you cant see it, doesn’t mean its not real.  Even you cant see our struggle, its their every single day.  You cant even begin to know how i feel when i am in pain. Pain is such a little word, it just does not begin to describe it well enough.. some days I really feel like ive been hit by a bus and I am not exaggerating. Sometimes it really does feel like I have a really heavy weight on my shoulders that i wish to god I could pick up and put down like a back pack. Sometimes my shoulders feel like i am wearing a fully loaded back pack and I cant take it off.  Sometimes I feel like my head is in a vice gripe that someone is slowly tightening on my temples. I actually feel like I can feel the grip pads digging into my temples.

I often feel like a plastic water bottle that is full of air with the lid on. That you squeeze from the bottom up in both hands but there is no release because the lid is on.

Like a rolled up toothpaste that you are rolling up to the top to squeeze the last bit of toothpaste out but the lid is on and it has no wear to go , no wear to travel, and no way out. So it just builds up this pressure till the top just blows right off.

sometimes the pressure is so much i take my glasses off just because the added pressure if them over my ears is to much.

I sleep with 2 pillows under my head, one at my side and one under my knees.

I sleep on my side or my back . If i stretch my legs in my sleep i tend to wake up with a horrible charlie horse.

I wish I could clearly make someone understand and see what I mean, but even now I must stop typing , my fingers have just had enough tonight.

Thank you for reading if you have gotten this far.

Good night my friends.

 

 

 

 

 

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BC Residents and news, CanPKU, facebook, Managing the diet, Social Media, That's my PKU life

PKU Strong.

Posted on by Amanda Horner

Alone we are rare, together we are strong. PKU Strong.

What does it mean to be PKU Strong?

It means when faced with challenges we stand tall.

When a parent first receives a PKU diagnosis with their newborn, They stand up to the challenge and immerse themselves in our community. Learning everything they need to do to make our children strong, happy, healthy and normal.  They mourn a little bit but then they learn that normalcy and a healthy life is still attainable and it pushes them through all the fears and dark days.

A parent raising a PKU child and just trying their best to give them the best start in life.

The PKU parent who spends hours and hours daily to log food records, take blood tests on their own child, makes formula, orders foods, weighs and portions their child’s food.

The PKU Parent who carries a scale in their purse.

The PKU parent who worries every day when their child is away from them that they are being fed properly or making the right choices for themselves.

The PKU parent who cries at night when their child is sick or cant get the last of their formula in.

A PKU child learning not to share their foods with friends or take food from others. Learning that what they eat can effect their brain development.  Learning the yes foods and the No foods.

The first time they can explain what PKU is when asked. The First time they take their own blood dot or measure and weigh their food.

The brave face we put on every time we go to clinic and meet with our PKU teams.

The PKU teenager who is learning not to be peer pressured or not to be ashamed of their PKU. They learn to embrace it as a part of them and dont let it hold them back.

The PKU young adult when they transition away from their childhood clinic and team and start attending the adult clinic.

Every time a PKU’er tries a new PKU food or formula.

The PKU women who wants to become a mom’.

The PKU Women who experiences a Maternal PKU Pregnancy.

The PKU women who is raising children that do not have PKU.

The PKU adult who are learning how to feed their families a regular diet and cook or bake regular food.

The PKU’er who is learning to manage their diet through school, work , travel, and life.

Every time we take a level. Or go for our annual PKU blood draws.

When we learn to bake and cook and count the PHE in everything.

When we go out to eat and dont cheat or take the easy way out.

When we dont give in to temptations and cravings.

For those of us who have fallen off track  and had to learn hard lessons.

For those of us who have fallen off and picked ourselves up again.

For those of us who constantly struggle to be compliant and maintain good PHE levels.

For those of us who just really hate this life and this diet but we do it anyways.

For those of us who want to give up or give in but try again tomorrow,

For those of us who dont let it break us. Don’t let it define us. Don’t let is consume us.

For those of us who have suffered high level effects and lost jobs, failed classes, failed relationships, lost hope, suffered physically and mentally.

For those of us who battle mental illness .

For those of us who each fight our own PKU battles daily.

For those of us who are trying, learning, pushing, accepting, and doing.

For those of us who walk this journey, whose life has been changed because of PKU.

For those of us have learnt and grown and developed skills because of our path and our journey,

For those of us who are a better person from learning and living with a rare genetic disease ,

that is PKU Strong.

I am not PKU Proud, I am not proud of a disease I was born with , that if their was a cure,  I would take it.  I am not proud I struggle , I am not proud that I fall down and get back up constantly. I am not Proud that I cheat and I eat things I am not suppoes to.  I am not proud that I do not have the willpower to stick to my diet 100 % of the time. I am not proud that I make mistakes and I suffer from high levels a lot of the time.

I am Strong because I dont give up. I am strong because I dont let it hold me down. I am strong because I dont blame my life failures on having PKU. I am strong because I use my voice to advocate for others. I am strong because I want to help people avoid my struggles and challenges.  I stand tall from the lessons I learnt and my past experiences with my diet and life.  I am strong because I have seen both sides of the coin. I am strong because I have had bad high levels and suffered. I am strong because I have been very healthy with great levels. I am strong because I grew a life , safely and healthy .

I am strong because I keep going. I am strong because I dont give up. I am strong because I use my voice to improve the quality of life for others.

I am strong because I live this life. I have gone to school, I have changed careers, I have traveled, I have worked outside my home. I have a family, I have friends, I have a community. I have a team. I have a village. I am a mother. I am a wife. I am a friend. I am me.

I am PKU Strong.

 

 

 

 

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CanPKU, News

The pharmaceutical fight in canada

Posted on by Amanda Horner

In 2008 Health Canada  approved the Kuvan for the use of treatment for PKU.

Kuvan is made from,  bh4 . Also known as tetrahydrobiopterin  which can be found naturally in the body .  In a Person who does not have PKU , BH4 stimulates the PAH Enzyme in the liver to breaks down phenylalanine from protein and change it into tyrosine. Tyrosine is a amino acid used by the body to produce norepinephrine which is a neurotransmitter that effects mood.  A person with PKU who has deficient or very little PAH enzyme activity cannot break down phenylalanine or make the conversion to tyrsoine. So the  phenylalanine which is toxic to the brain, builds up and accumulates . Bombarding the Blood brain barrier and can lead to severe brain damage.

For the longest time ( since the 1980s) a low protein diet and medical formula was the only treatment for PKU.  We have to follow a diet where we restrict the amount of protein we eat to keep the level of phenylalanine in our blood in a non toxic range. For every 1 gram of protein we eat, that is 50 mg of phenylalanine.  I need to keep my daily intake of food I eat under 8 grams of protein. or 400 mg of PHE.  Then along with my low protein diet, I drink a medical powder formula that I call my milk. This is how I get protein with out any phenylalanine as well as all the other important amino acids, nutrients and vitamins i miss from my diet.

Now over 30 years later with all the new research and diversity in the medical feild , researchers have discovered treatment for PKU should have more of a variety. specially since we now know, that the many forms of PKU are determined by our individual genes.  We all have different mutations.  We need a 3 pronged approach to treatment.  Diet. Formula. Pharmaceutical drugs.

This is wear Biomarin comes in. the drug company that is manufacturing medications for PKU.  Biomarin has currently made 2 different drugs for the treatment of PKU.

Kuvan a pill form medication and Palynziq an injection similar to Insulin for diabetics but for PKU.

Biomarin has synthesized KUVAN making it a medication with the BH4 as the active ingredient  to give PKU patients with some enzyme activity a  boost to try to kick start the enzyme activity into breaking down phenylalanine .

There are a few different forms of PKU ( classifications) Kuvan only works on some forms of PKU where the patient has little enzyme activity already.   I am classical PKU. The rarest and most extreme form of PKU. So I have 0 PAH activity. none. at all.

This means , Kuvan will not work for me. It may work to help me with my depression and anxiety symptoms but it will not treat my PKU.   Kuvan works best in mild and hyper classifications of PKU.

When KUVAN is used in treatment for PKU patients with hyper or mild PKU , the enzyme activity is given a boost and it is able to break down more phenylalaine.  This means the person can now eat more regular and higher protein foods. It is not a cure. IT does not make the PKU go away. We still need to monitor our levels and our diet.  Though , by being able to tolerate more PHE and protein , the person can now enjoy a more well rounded healthy, whole nutrition diet.  They are not so dependent on the low protein medical foods that are highly processed, high in carbs and refined sugars. They can have more natural proteins from food instead of our medical formula.  This also increases their intake of natural , non synthesized vitamins, minerals and amino acids.  This not only improves quality of life but also has a huge impact on ones health when they dont have to rely on such a synthesized diet.

Again Kuvan does not work for everyone with PKU.

But, the new drug ( injection) Palynziq IS suppose to work for all forms and classifications of PKU.

Chemically , it is a pegylated derivative of the enzyme phenylalanine ammonia-lyase that metabolizes phenylalanine to reduce its blood levels. It was approved by the Food and Drug Administration for use in the United States in May 2018. After completing many human trials.  I still do not know to much about it.  To learn more about Palynziq please visit : https://www.palynziq.com/hcp/

Palynziq has not been approved in canada , because it has not been developed here, or used or tested. For the longest time, Biomarin did not own the rights for it here in canada. Some German company held the rights. They did not know what it was for and did not care to develop it. Biomarin has very recently obtained the rights here in Canada. However there is still no plans to develop it or bring it into canada that I know of.

Since 2010 Canadian PKU and allied disorders , myself and our team of advocates have been fighting hard for access and coverage for the use of  KUVAN to treat PKU all through out Canada. We have faced a lot of push back from our governments across the country. I think Kuvan is only being used in 2 or 3 provinces and covered in 1. BC wont even come to the table anymore to discuss or negotiate. I myself have met with local MLAs and Terry Lake when he was the health minister.

PKU is so rare, only 1 in approx 10-15 thousand babies born are diagnosed , then out of that only a percentage with benefit from KUVAN. The people are able to use KUVAN require a large amount of pills daily. The dosage is bsaed on the persons weight. I think when I was trialing KUVAN I had 8 to 16 pills to take daily.  So this could cost upwards of 80,000 dollars or more.  For these reasons and because despite our submitted studies, documentations, research and health Canada approval the government tells us they dont see enough evidence that it beneficial enough to treatment or for them to cover.

Because of this difficulty of trying to get KUVAN covered Biomarin has little to no hope we will have any success with Palynziq. Even thought it is suppose to be usable by everyone with PKU.  Though this would make it much more costly.

My argument to the government is this. What is more expensive? Funding a drug for a percentage of an already small population of people that will change their lives and make them more healthy. Or , Paying for the consequences of PHE levels and there symptoms?

Let us not forget, untreated and unmanaged PKU can lead to many many horrific side effects.

Cognitive impairments , developmental and neurological disabilities. Brain damage, Feeling “foggy,” or a slowed processing of information , Behavioral or social problems , Problems with memory, Inattention , Difficulty in decision making, problem solving, and planning , Depression , Anxiety and Irritability. The level of severity of these side effects can leave a person to be an un-functioning member of society or a serious burden to the medical system.

Heck!! before PKU was discovered in the 1960s, people where miss diagnosed  or not diagnosed at all. Leaving them mentally handicapped by 6 months of age, and being institutionalized in group homes. some in a vegetative state.  That is an even way bigger cost to the government and our society then funding a treatment that can make people with PKU live completely normal and healthy lives. To be a contributing member of society and communities.

I know for myself, when my levels are high specially for a long amount of time, it not only impacts my mood and my brain, but my body physically too.  In the past I have struggled just to go to work and keep my job. I struggled all through out school as a youth and nearly failed out of school because I could not pay attention or retain information. My high PHE levels gave me learning disabilities and i struggled so much specially with math and science.  When I grew up, got healthy and was able to manage my diet, I went on to college 5 years after high school and became a nurse. I had great greats.

I struggle with compliance though.  Managing the diet day to day, measuring my food, tracking my intake, avoiding higher protein foods, not cheating on my diet , eating only low protein foods and doing regular blood tests on myself then mailing them in the mail to get my results 10 days later can really take a toll. Sometimes the day to day life gets in the way and the easiest thing to let go of is self care.  it is easier and quicker for me some nights to eat rice for dinner and not plan out my low protein meals or calculate and weigh. Its faster to eye ball my meals when I have a daycare to run and a child to raise as well as looking after my home and my family.  Some days its just easier to eat regular bread or potatoes instead of having to make mine from scratch from medically made baking powders. I dont always have the time to set aside to meal prep and plan and make foods from scratch. I dont have the luxury of being able to go out to the grocery store and pick out my foods. I have to order them online from Montreal and have them shipped to my house. These medical foods are so critical and are made not to have protein or phenylalainine in them , and sometimes they are just not tasty or healthy for you . because of the carbs and sugars and calories.

My battle with my PKU and beings stable is so dependent on my access to treatments available to me.  I should have the same aces as anyone else. I have the right to be healthy and to have a higher quality of life.  I just want to have aces to all the tools in the tool box so I can live my best life and be my best for my family, friends, and community.

Canada has a long way to go in the treatment of rare diseases . We need a national health care program.  Until this happens, and until we get the aces and coverage we need to keep our brains and our bodies healthy, I will not be silent. I will not stop trying to advocate and lobby to the government for all the others with PKU like me.

I strongly encourage anyone else to join our fight. Alone we are rare, together we are strong. It is my mission to educate the public on PKU and what is is and how they can help. One more person who knows what PKU is ; the less rare that it is, the higher chances we have of our governments listening to our voices.  The more people who educate themselves on our needs and our wants , is one more person who can make informed votes and decisions on whom we elect to help our cause.  We need to be voting for a movement that works for everyone.

This is our fight. Thank you for listening and being apart of it. Please feel free to share or contact me if you would like more information on how you can help and what you can do .

Thank you for reading.

Amanda C

 

Links:

PKU and the brain

https://www.pku.com/about-pku/phe-in-the-brain

Kuvan:

https://www.kuvan.com/

Palynziq

https://www.palynziq.com/approved

CanPKU

http://www.canpku.org

 

 

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Low pro food / cooking

Baking Day

Posted on by Amanda Horner

2018-11-05 07.37.13

 

One of my go to low protein recipes that I have used over and over and over again that it is ingrained in my memory is the wheat-starch dough recipe on the cambrooke foods website.  I have been using this recipe for a good 13 years and never tire of it. Whenever I need to get my levels down or have time to back it is my favorite one to fall back on.

I use the recipe from the website but then I make my own pizza pockets and buns. I divide the dough into balls and either make a dozen wheatstarch buns. Or I roll them out, add Ragu, low pro cheese, garlic, onions, mushrooms and tomatoes then fold over and bake.

I freeze them for the week and grab one of each at lunch . I mash up an avocado with salt and pepper then eat it with the bun or pizza pocket. I reheat them in the microwave and spread the avocado mash onto the bun or just dip them in it. Either way its fabulous and I could live off them.  Today I am all out of avocados so I will just heat them up and add margarine and honey or jam to the bun.

On the weekend I made a garden salad , added low pro Parmesan cheese amd used the cambrooke mushroom burger mix to make fake meat to add to my salad and ate it with a wheat starch bun and jam! It was very filling. I cant seem to just eat the salad on its on and either have to have a bun or toast or a sandwich along with it. I am pretty reliant on carbs and low protein foods . Specially breads.

One of my favorite low protein sandwiches right now is a mock “tuna salad ” sandwich made with jack fruit, pickles, onions, garlic , salt pepper and miracle whip. SOOO GOOD!

Here is a photo from my salad lunch on the weekend. 2018-11-05 11.39.40

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Managing the diet, That's my PKU life

In 10 years

Posted on by Amanda Horner

One of my best friends and I were talking on the phone the other day. I was having  a really low day and feeling down. She asked me ” Mandy, when you think of yourself in 10 years what do you see? ”  ( I hate being called Mandy by anyone else LOL)

I really had to think about that question.  It really got me thinking a lot and reflecting on myself as a person now. You see I am very unhappy with myself. I have 0 self esteem, or confidence or self love. I know there is a lot of things I need to work on and changes I have to make.  I just havent had the will power or motivation to start on that journey or stick to it.  I always give up. My biggest thing is I really want to loose weight. I know I do but I havent done anything to even begin to try. I dont work out, I havent gone to the gym and I havent changed my eating. I just know I need and want to.

So when I look into the future, I dont see myself as I am now. I think about what I want.

In 10 years I will be 42 with a 12 year old daughter.  Sometimes I can see myself with 2 little girls and very involved in their schools and field trips etc. Cole and I at every game and activity and driving a van with their friends to and from concerns or plays or sports. That just seems sooo far away and crazy to think about. I  know I want to be a “soccer mom” and on the PTA and involved in my community. I want to be fit and healthy.  I want to be active and I see myself as happy and doing all these things.

So how do I get there? if I keep going the way I am going now, that vision of me I hold in my head will never happen and in 10 years I will be sitting here like What happened? I know I cant keep going the way that I am going. So when does the switch happen? What does the change start? And how do I get started?

Cole says I need to make a plan and stick to it? I have made so many plans, written them out step by step, set up meal plans,  talked about it and think about it , but then thats where it ends.  or if I do finally stick to something I fail 3 weeks to a month in because I’ve put so much pressure on myself and made an all or nothing plan. I always want fast results with little effort or work.

I could be going for walks or doing yoga, I could schedule some time into my day and make it happen. I plan to. I say tomorrow I will. Tomorrow comes and then I dont do it.

I am in this rut. I am jealous of everyone else who makes it look easy or is having results, but they deserve it because they are putting the work in.

i wish I could afford a personal trainer to come into my home and work with me once a week because that would keep me motivated and they can push me and challenge me and I wont have an excuse about not going out to a gym or not knowing what to do. So do I budget for that and put out that extra cost as an investment into myself to get me started even though we cant really afford it? I do think it will help. Maybe if it can get me started and developing new habits that in the new year I can continue on my own once I know what I am doing and have a momentum going?

I have joined gyms in the past and ended up paying for a membership im not using. I  keep telling myself id love to go for a swim or a work out at the Y but I dont have anyone to watch Madelyn and i dont go out at night because of my anxiety. Weekends wont work this month either because I am a vendor at craft fairs every weekend in November.

I should use my mornings off on Monday and go to the Y and leave her in their play care center but I havent taken her there before so she dosent know anyone and its not familiar. even though its part of the membership costs.

there is really no point to this post today, I just need to write and get some thoughts out to make sense of them and sort through them. Sometimes its just easier to admit it aloud and talk it through before it makes sense.

I must say, My family and I went out for a nature walk this weekend and it was so nice. I realized how much I really missed being outside in nature and walking with my family. enjoying the fresh air and moving my body. It was really refreshing and I really felt a difference in my mood the rest of the day.  We had a chance to chat with each other and not focus or worry about work stuff and day to day things. It was really nice to re connect and enjoy the weather. I really do want to get back to that. I miss riding my bike to. I had a lot of fun with madelyn this spring going for bike rides around the neighborhood just her and I . I hope I can squeeze a few more in before it freezes and the snow starts. I had hoped to this week but we are all down with the flu.

I was also doing beach body on demand 21 day fix at home. I made it almost the whole 3 weeks and I did loose 4 lbs. But then I fell and hit my head. I got a concussion and had to stop working out , after that it was just to hard to pick it up again.

What has worked for you? does anyone have any tips, advice or experiences they would care to share with me to help get me started? What would you do? What are your goals? id love to hear from you. 2018-11-04 09.54.35

My husband and our daughter on our family nature walk last weekend.

 

 

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Managing the diet, That's my PKU life

Follow up Re Intermittent fasting.

Posted on by Amanda Horner

Today I received my blood phe test results from some tests i did to monitor the progress of my experiment with intermittent fasting.

I did a blood phe test after waking up just before I normally would eat at 7:58 am  It came back at 12.5 mg/dl

Then I did another blood phe test at 1243 pm at nearly 17 hours fasting and the result came back at 15.2

Then I ate my first meal and then waited and did a 4 hour fast between meals and took another blood phe test at 5 :16 pm. It came back 11.8 mg /dl

I weighed myself , and I had not lost any weight. I took my measurements and I had lost no inches. I had been keeping track of how i was feeling and waiting for it to get easier and it just never did.

I had a blood profile done by my doctor and my muscle enzymes came back elevated indicative of muscle breaking down.

after looking through all my own data and looking into my myself i have decided that this is not for me.   I do not like how it made me feel and i was so god damn hungry and emotional. I hated waiting so long to eat and struggled so hard to get through the morning.

I am honestly glad to be done.  I am shifting my focus back to eating healthier,  more low protein, more fruits and veggies and drink more water and try to do yoga more regularly.  Id like to get my levels under 10 again.  I am not drinking nearly enough water. I maybe drink 1 L a day and i should be drinking 4 or more.

I have a few plant based eating books and facebook groups im looking through to try to get some more meal ideas and give myself some variety.

one of my fellow pku adult bloggers over at PKU Positive has written a meal plan PDF that she is selling online and I hope to get it on my next pay day. I really like her outlook on diet management and being sucessful with out so much low protein and unhealthy foods. I like the sound of plant based and whole fresh food eating but i’ve never been able to do it in a way to stay full , and well i really like my low protein foods LOL

 

I just know I need to make myself a priority and get healthy again . I need to loose weight an be active and heath for myself and my daughter.

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Managing the diet, That's my PKU life

Mental Illness

Posted on by Amanda Horner

The Webster dictionary defines Mental Illness as ;

any of a broad range of medical conditions (such as major depression, schizophrenia, obsessive compulsive disorder, or panic disorder) that are marked primarily by sufficient disorganization of personality, mind, or emotions to impair normal psychological functioning and cause marked distress or disability and that are typically associated with a disruption in normal thinking, feeling, mood, behavior, interpersonal interactions, or daily functioning.

But those of us who suffer , know its so much more. I almost feel like the described above make it seem as its your fault for not thinking correctly or following the norm.

I have battled with depression and anxiety for the past 10 years and it took me 8 years just to accept that Mental Illness is just not all ” in my head” That it is a chemical reaction too.

A chemical imbalance in the brain is said to occur when there’s either too much or too little of certain chemicals, called neurotransmitters, in the brain. … It’s often said that mental disorders, such as depression and anxiety, are caused by a chemical imbalance in the brain. – ( Source https://www.healthline.com/health/chemical-imbalance-in-the-brain)

Now we have recently learned that Adults with PKU have a higher risk of issues with mental illness that PKU affects the brain. When neurotransmitters are not made in the right amounts, the brain cannot function properly. High blood Phe levels can cause disruptions in neurotransmitters like serotonin and dopamine, which are important for mood, learning, memory, and motivation.

( source PKU and The brain http://canpku.org/pku-the-brain )

That being said, Just because I have PKU , does not mean I automatically will have depression or anxiety.

I think for myself personally, that the trauma and my past experiences are what caused my mental illness but struggling with my PKU on top of it defiantly makes it harder to cope or to get better.

I seem to go up and down. I have really good times and really low times. I am not bipolar though. I was diagnosed with chronic major depression, anxiety and panic disorder many years ago now. I know I have written about it in the past somewhere on my blog but as they years have gone by the posts have been buried or forgotten.

I was medicated for depression since 2012 to 2015.  I had tried so many different medications on the past and been on and off so much nothing ever really stuck. But in 2012 my doctor and i finally found a good treatment regime.  In 2014 I started to really struggle again. I ended up going to group cognitive behavior therapy until May 2015. Then I had private one on one counselling weekly till 2016.  I got pregnant with Madelyn in June 2015 and went off all my meds. I continued to see my counselor weekly in the beginning of my pregnancy then monthly, and after Madelyn was born it was harder and harder to get into sessions so I stopped going and my appointments really dropped off until this year when i was discharged in August.

When madelyn was about 7 months old I had been off my meds for almost 2 years and had no issues with post partum. That was my big fear was having post partum depression and unable to bond with my baby or look after us both.  I was lucky. Or So i thought.  Everyone is well aware of post partum depression and the risks . We hear about it more and more and their is alot of support and help to prevent it. What we dont hear a lot about is post partum anxiety.  or that either post partum depression and anxiety can occur up to a year after your baby is born. I thought I had escaped and succeeded. Then my world was turned upside down by graphic and horrible panic attacks. Visual “day mars” of tragedies that could occur to me or madelyn.  The fear struck me from all sides. What if we got in a car wreck? needed the jaws of life ? that she was hurt or worse and I could get to her.  What if was killed? I would have very visual images flash before me of the whole scene unfolding before me and powerless to stop it. My body would go rigid with fear and the tears would stream down my face. I would shake and be terrified to go out or to drive with her. so i avoided it at all costs.  I remember i needed to take her in for a check up at the OBGYN and i was terrified of going alone, of driving with her in the back away from me. I stood in the door with my keys looking at my car shaking so hard and crying bagging Cole to drive us and stay home from work but he couldn’t.  Winter made it even worse, snow made it even worse. I barely went out at all that winter.  By the time spring came back around I knew I needed help. I made the decision to go back on my medication. I was really struggling.

Here we are today and madelyn is 2.5 years old.  I am still having ups and downs. I am still struggling.  This summer was especially tough. I fell off track with everything. With my self care, with my diet, with my phe levels, with my weight, with my excersize. With my meal planning, with my whole daily routine and schedule, My levels got out of control and everything just sort of falling apart. My mind has been racing. I have built up walls around me that have cut me off and held me back.

for the past 3 years, i have not driven at night or after dark.  I dont normally go out after 3 pm or if I do not outside my neighborhood.  I wont drive or go out after Cole is home. This has meant weekends too. I get invited out to a friends or a gathering in a weekend or evening and I wont go not because I dont want to, but because I cant make myself.  I want to. I tell myself for as long as i can in advance that i will, or that I will try. Then they day comes and I just cant do it.  I have missed out on events  , concerts and shows ive really wanted to see cause i cant make myself go out.  I have concert tickets to see Brett Kissle in just over a week. Its a night. I have to drive myself. Normally who ever I go with will drive me but this time im meeting a friend there. Its almost winter, its dark, its wet and raining. I cant see well enough as it is at night but then add the shine and arorus and reflections from the lights and the rain.  Heaven for bid what I will do if it snows. I wont take  bus or taxi. I hate them and they make it worse. If I have a panic attack or if i need to leave i need to leave right now not wait for a bus or taxi.

I have all these things I want to try. I wish i could go to the gym, join a yoga class, go to pottery classes and learn to make something creative with my hands. tgo get out of my head and enjoy myself .  put this energy to good use. But I cant push myself hard enough.   I know i shouldn’t say I cant so much. or that I wont . I know its negative talk and its limiting me and cutting me off. I am actually a social person and i have great friends. I am extroverted and I do enjoy doing things. But I have limited myself to the times of day that i can do that. I have built these walls around me and its made me a bit lonely. I have lost friends from it. It has made me unreliable and not countable. It has made me a flaky friend. I thank god my friends that I do have put up with me.

When I think about how bad things where before and how far I have come. I really have made great progress. I have over come a lot but there is still chains on these shoulders.

Moving away from the island and memories that haunted me totally lessened the burden. I hated living in my own home town for the chains weighed so heavily on my heart and body and it was a weight that was exhausting me to carry. I felt so much more free after we moved. Like my chest lightened and i could breathe. I was literally afraid to breathe back home. I was afraid of who was around any corner.

I was bullied , beaten, abused and nearly killed as a teenager. I carry the guilt and shame of my past and of who i was . Every time i go home even for a visit im scared i will run into someone who knew me then and judge me. I have worked so hard to get where i am in life. I automatically want to shout ” Thats not me “s  thats not who i am. Please dont let it define me ”  I am always looking over my shoulder over who might see me. I am so glad I dont live there anymore. It was not a way to live my life. when I drive past a familiar spot, or a familiar street, or somewhere i spent time, or where something happens its like the air is knocked out of me. I literately dont breathe.  I was so happy last year when my old high school was demolished and torn down. One more reminder I dont have to see.  Just walking past the outside I could hear the taunts, feel the heart break, feel the stares, I was flooded with reminders and memories. I can still see it. I can still hear it.  and god damn nearly 15 years later , I can still feel it.

I did not have an easy time at school or at home. growing up in a dysfunctional family that has been torn open at the seems and split apart right at the heart leaves scares on a soul.  I wasn’t happy long before my accident in 2008 . I didn’t realize how much it still effects me, how i still hang onto it and is still carry it.  No one else who was there rembers it or feels like i do.  Everyone who say me beaten or bullied , or ganged up on and jumped can move on and forget. My abusers have moved on and started families of their own and dont give it any thought. My heart still remembers , my soul still feels it. it still effects me. I have given them far to much power. I have let them haunt my dream for far to long. why Cant I move on to? I have such a great life now. I have worked so hard. I can appreciate my accomplishments . I went to college, I became a nurse, I became a mother, I changed my career and opend my own business. I have a wonderful life partner who after everything and 13 years still loves me despite my problems.

It has made me very self conscious, needy, and very low self esteem. I constantly need reminders and reassurance . I am always striving for someone elses approval. I do not love myself or my body.  I do not want this to be the example for madelyn. I want her to love herself, be strong and confident and stand up for herself. To not be a victim or meak and weak. I want her to be the best she can be. I want her to be healthy . I want her to feel loved and not feel fear. I want her to feel her parents support and that she is able to come to us for anything. In general i just want to be better. I  know the things i should do to make myself better but here it is again, I cant.

I am tired of everyone telling me to ” just do it” or get over it. Or that its all in my head. that the chronic pain that is weighing me down is caused form my mental illness, that my stress and my struggles are physically manifesting and reducing stress loosing weight, eating healthy and being active will solve all my problems.

i wish there was a magic wand to wave and make myself better.  I think these feelings and struggles are a large part of the reason i stepped back from my pku advocacy work , from my blog and from mentoring pku friends. I have felt like , if i cant help myself what right do i have to help them? what right do i have to be voice in this community? Or who really wants to hear from me?

but , writting helps me. Im slowly finding my passions again and doing things that bring me joy. Like reading. Oh man i love reading. Im trying to learn yoga and work towards using it more frequently in hopes of growing my own personal daily practice. I want to start walking again and hiking. Before it gets to cold or snows.   SO i guess its back to step 1 and baby steps. I will remind myself, one day at a time. One step at a time.  Every day is a fresh start to try again or to keep going.

Maybe i should write that on my mirror? Hmmm.. good idea !!!??

 

 

 

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Uncategorized

Essential Oils

Posted on by Amanda Horner

2 years ago I heard about using essential oils to improve quality of life . Essential oils have been around for millions of years but lately they have become a very popular alternative therapy. Essential oils can be used topically, internally and by inhaling or diffusing.  There are tons of documented uses of essential oils.  Though at the time I was very skeptical. I had seen my friends all over facebook speak of their own personal use with EO and what companies they liked.  I seen two names above all else used the most. Young Living and DoTerra. I decided to research both companies and EO . I began by reading unbiased articles i found on the internet, then reading books , and reaching out to friends and community members who used them.  I joined groups on facebook and I talked to reps from both companies on why they chose their company and how.  i poured through each website and google searched reviews and articles on each company. Looking for law suits, complaints etc.   After a year of researching  and determining they are safe for use with PKU. Speaking to my doctor and my Dietitians of course, and connecting with a local rep whom i now call a good friend i decided to finally try these EO for myself and see how I might benefit from them .  I signed up to be a member with DoTerra and bought a starter kit with EO samples and diffused.

That was one year ago this week. On Monday actually lol Now I have been so impressed and made EO and Doterra a regular part of my routine I have upgraded my membership to Wellness Advocate / consultant so i can share these EO with my friends and families.  After seeing first hand how they have changed my life i feel so strongly that more people need to learn about them and give them a try.  I really feel EO are essential to our personal health.

So after reading about my status change you must think that this post is trying to sell you something, but I am really not. I just wanted to share my knowledge on EO , that they are safe for PKU and about a company i love being a part of . If after reading this article you decided to try , thats great! and if not thats ok to. I just hope to inspire someone to learn more and do your own research. I believe the EO can speak for themselves after all.

So lets start with a little back ground information and some links from the doterra website :

What is an essential oil?

If you have ever enjoyed the scent of a rose, you’ve experienced the aromatic qualities of essential oils. These naturally occurring, volatile aromatic compounds are found in the seeds, bark, stems, roots, flowers, and other parts of plants. They can be both beautifully and powerfully fragrant. Essential oils give plants their distinctive smells, essential oils protect plants and play a role in plant pollination. In addition to their intrinsic benefits to plants and their beautiful fragrance, essential oils have long been used for food preparation, beauty treatment, and health-care practices.  – Taken from the Doterra website .   https://www.doterra.com/US/en/what-is-an-essential-oil

What are the uses of EO?

Essential oils can be used for a wide range of emotional and physical wellness applications. They can be used as single essential oils or in complex essential oil blends depending on user experience and desired benefit.  –  https://www.doterra.com/US/en/what-is-an-essential-oil

How to use EO safely :

https://www.doterra.com/US/en/using-essential-oils

 

The top 10 most common EO and their uses:

  1. Lavender. Diffuse a few drops to ease into sleep, add a drop to your moisturizer for a soothing boost, or add to water and tea to ease tense feelings.
  2. Peppermint. Energize your day by adding it to a diffuser, soothe occasional nausea by taking two drops in water*, and rub into areas of tension on your neck, shoulders, and head.
  3. Lemon. Drink with water to cleanse your body, give your respiratory system support, and help with digestion.* In addition, add to water in a spray bottle to clean household surfaces.
  4. doTERRA On Guard®. Support and strengthen the immune and respiratory systems from seasonal or environmental threats*, diffuse to purify the air, and to give off an uplifting aroma.
  5. Wild Orange. Diffuse in the room to uplift your mood when you’re having a bad day and purify the air, support your immune system and add flavor by adding two drops to your beverages.*
  6. Frankincense. Support your cells with two drops in a veggie capsule*, apply to skin to help with razor bumps and other skin imperfections, and diffuse to add peace, relaxation, and satisfaction to your day.
  7. doTERRA Breathe®. Maintain feelings of clear breathing by applying to your chest or diffusing into the air, rub into your feet or put into your palms and cup them around your nose to minimize the effects of seasonal threats.
  8. Melaleuca (Tea Tree). Add to face wash for skin cleansing benefits, use it in your diffuser to cleanse and freshen the air, and apply to fingernails and toes to keep them looking healthy.
  9. DigestZen®. Take internally for indigestion and bloating and to ease feelings of queasiness,* or rub on your stomach before a long flight for its calming aroma.
  10. doTERRA Serenity®. Help calm your emotions and soothe your senses by diffusing or applying to your temples or wrists.

So how do I personally use EO in my daily life?

Well I drink lemon or wild orange in my water through out the day. I also use the Smart and Sassy EO to support healthy weight loss and suppress food cravings . Specially since I am doing intermenting fasting , it really helps me not feel so hungry.

I diffuse almost every oil I have in my house. I had a diffuser in every room. I diffuse Easy air quit a bit since my daughter has viral induced childhood asthma and to help us fight off colds , coughs and respiratory threats.  I clean our house with Ongaurd and take 1 drop in my water to boost my immune system when environmental threats like colds and flus are high.

I use peppermint on my tummy when i have cramps or a stomach ache.

I use Deep blue when i have muscle pain or knots in my neck.

I use peppermint and wild orange when I have a headache or sore neck.

I use motivate on my feet when i get up, and diffuse it.

I diffuse balance when i am doing yoga or need help grounding my emotions and anxiety.

I diffuse lavender in our bedrooms for sleep.

I wear a necklace or bracelet with EO beads with Serenity and balance.

I use purify in my car vents to keep away dust and allergens.

I use peppermint on the floor of my shower to energize me in the morning.

I use melaluca on my nails and in eczema cream for my daughter.

I use terrasheild to shield off bugs and mosquitos in the summer.

I use aroma touch in massages, and I use clary sage on my tummy when I have PMS or my period.

I also have the deep blue muscle rub . I want to try the tooth paste and shampoo line next.

At Christmas last year i home made all my Christmas gifts with my EO. I made body butter, lip blam, chocolate bark with peppermint and crushed candy canes. The doterra blog has a ton of great DIY recipes for everything from personal care to cleaners , laundry soap, body soaps and other.

I even made scented candles and play-dough with the EO

So You may be wondering what was it that finally drew me to Doterra.  Well I loved how transparent the company was. That they did not use brokers to cultivate the sales of plants to obtain their oils. They did not traffic endangers species and farm them.

Doterra pays local farmers to cultivate the EO in the native land. So the plants gain the full benefits. They are sustainable and ethical.  They give back to the communities where the farmers live by creating programs, financing education and mentor ship programs. They have programs to help young girls with feminine heigine, they fight back against sex trafficking in 3rd world countries.

The oils are 3rd party tested for pureness and therapeutic effect. They are the most pure on the market, they are not cut or synthesized like 80 % of the public EO companies.  They have been FDA approved for internal use . They are the only EO company that has this .

They have whole research companies dedicated to use of EO in the medical fields and even whole hospitals that treat with EO .  they have doctors on their board who certify their safety and uses.

All sales go right back into the doterra company and brand,. The CEOs share their earnings in shares to all leaders and consultants of a certain level.  They generally care about their staff, their brand, the safety and the pureness of the oils, how they are used and how they are made. They care about their consultants and provide education opportunities and training to make sure we have the same knowledge available to use.

They have a Multi level marketing structure unlike any other MLM pyramid scheme that actually works .

The wellness advocates do not try to push the oils on anyone, we care and want to help. We ourselves use these products and want everyone to enjoy them safely and responsibly.

I cant say enough great things about EO or Doterra. I know I am really glad to have them in my life and I love using my EO every day.

Just last night i had terrible pain in my stomach that woke me up at 2 am. When i got up this morning i dug out my peppermint and put 3 drops in my hands and rubbed it on my belly and i feel so much better.

if you have any questions about EO and their use please feel free to message me or have a look at my website. Remember no pressure.  the point of this post is just to share my knowledge and make people aware.

https://www.mydoterra.com/amandacosburn/#/

 

 

 

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