Category: That’s my PKU life

Managing the diet, News, Social Media, That's my PKU life

Rare Disease Day / So what can you eat?

Posted on by Amanda Horner

WOW! It has been 18 months and 1 week since my last blog post and life sure has changed. Inspiration to write does not strike to often these days. Living and coping through a pandemic while raising my babies keeps me on my toes.

However inspiration has finally found me. How fitting is it that today is also Rare Disease day 2021.

In Honor of Rare Disease day I watched the new documentary about PKU called ” So what can you eat?” available on Amazon prime in America and Viemo.

This film is created by Jack Everitt A PKU adult. His Friend Liberty and other PKU community members such as our friends Lillian Isabella , Mark Edwards, Bianca Albanese, Lynn and David Paolella , Patricia Guthrie and more!

My first initial thought was how neat it was to see the faces to go with names I so regularly see on my pku Facebook profile friends list and in our world wide pku fb group. TO hear their voices to! I recognized many of my connections that I have followed on Facebook or Instagram for years. However never actually heard their voices. Like our dear Lynn! To me she has a beautiful accent!

I was able to gain access here in canada to the film through a screening by Ajinomoto Cambrooke, Inc . However I was only able to watch the first 20 mins of the film yesterday and only able to stay for 15 mins of the Q and A hosted by Lynn , David and the rest of the film crew after the screening. I signed up online for the zoom premier and given a access code for Viemo. I was sent a snack pack from Cambrooke of the Sea Salt Tortilla Chips and sample of the shake and cheese wit a recipe for ” Shake N cheese Queso to eat during the preimer. With formula samples to come later.

In the first 20 mins I was already blown away. I had gone into the movie with mixed expectations as It had been generating buzz in my facebook group for a few weeks now. Mixed from ” One big cambrooke commercial” Poor me attitude” etc etc. So I was disappointed for the negative reviews for a film I had been anticipating and excited for. I knew right away I was reserving my judgment as I am one to form my own opinions . I am very glad I did.

In the first 2o mins I danced between relief, justification, acknowledgement, inspiration and YES !! Thats me.

It was so amazing to finally have something geared towards the adults of my generations. Those in-between you can go off diet at age 7 to diet for life to hey look how far we have come and what’s available now, This should make your life easier. These Adults where speaking my language. Everything they said was so relatable on such a different level and brought to your attention. Creating awarness. The things no-one wants to talk about on facebook groups because we get bashed for scaring new families. Sometimes as an adult with PKU we feel with out a voice , with out a support system and even jealous of kids today for having it so much easier. It always seems new advancements and support systems are geared towards youth today. Everyone wants to help kids. To improve their quality of life and give them better access. PKU marketing is geared towards families, to newly diagnosed, or to youth and teens. Or maternal PKU. Because when your pregnant with PKU you are special and paid attention to and supported during your pregnancy. But soon as baby is born the shift goes back and you aren’t seen for as often, in touch as much, and coping and learning to parent and often the diet is the easiest thing to slack on . Its also rather difficult to drop right back to your regular phe tolerance and restrictions after spending the last few months being able to eat almost anything!

So here finally, was my story being shown on the screen. Being made to given attention to. In Other peoples words, lives, stories and experiences that mirror my own. Relatable. and Inspirational.

As I watched these adults share their stories that resonated so personally to me It was like watching and listening to my friends. I was knodding and shaking my head yes yes yes!

Then Lillian came on and she said something that struck me hard.

“When someone without PKU looks at a menu, they’re trying to decide what they want. When someone with PKU looks at a menu, they’re trying to decide what they can have.”

and I wanted to cry. I never even thought it about it that way or put it into words but this was exactly accurate. This is what I do too.

I knew I wanted to keep watching. I had to pause the film and come back to it today and I am so glad it was still available to me today for a few more hours.

I actually began to take notes as I watched because I knew I was going to need to reflect.

So many things that jack, mark, and Lillian said I agreed with. Jack mentions that he just gave up. He wouldn’t eat. He had to disassociate food with events and celebrations. It was just easier sometimes to just not eat. And I found myself thinking to my highschool years and that is exactly what I was doing to. I would not even eat food with my family. I often hid in my room with my food. or i JUST didn’t eat. I didn’t take school lunches anymore. IT wasn’t worth the questions and the comments. People use to make fun of the way my formula looked or smelt so I wouldn’t drink it. I was separated from my peers, my family and social gathers. Parents of my friends didn’t want to deal with having to have something extra for me. In elementary school I had to go to the nurses room or the teachers staff room so they could give me my formula from their fridge and they had to watch me drink it. In highschool they didn’t do that for me anymore so I didn’t take it. Not realizing to years later that not spreading out my formula through out the day equally was causing me damage. Jack also spoke of this.

Jack , Lillian and mark and other adults mentions not knowing the difference in yourself when you are off diet or on diet until you have been back on it for a while. Then you look back and your like oh. Not remembering the birth of your siblings, or something that happened. a milestone or a memory. Its like its blacked out. I often see photos from my childhood and dont remember it happening.

Lillian spoke of throwing her formula down the drain. I have done that soooo much as a youth. For years. That was my normal. Now as an adult I know how good drinking my formula makes me feel. If i miss it or an off even by a couple hours I feel sick. I never skip a formula now.

Managing PKU is a full time job. It requires so much “extra” so much thinking and planning. you just cant go out and do something or eat something or go somewhere. your always thinking what can i take with me that doesn’t need to be cooked or heated. What transports easy, where can i eat? how can i mix my formula? Sometimes you need to pack an extra bag if your going to be away from home longer then expected. I carry a case of formula in my car for those moments.

Meal planning and cooking is time consuming. It can take 45 mins to cook an PKU meal between calculating, prepping ingredients, cooking, plating , serving etc. Sometimes I just dont have the time. specially when I have a family to cook for. A daycare to run, babies needing attention or to be fed. I end up having to cook multiple meals, or feed my family first and eat later . If I dont have something low protein ready to grab or if i get to hungry Its the easiest thing to just not to do it and make a poor choice and grab something high cause its quick and convenient. knowing full well i will pay for it later. Sometimes I just dont have the patience to deal with all the extra. I want something Quick and filling and dont want to be hungry 30 mins later all over again.

I love that the crew touched on the realness and the rawness of the diet. That everyone mentioned is it healthy? Jack talks about always being in a calorie surplus because of the carbs and how hard it is to managing micronutrients on this diet. Having to watch what we eat but not having control or choosing what our numbers are, That we have a set stagnic tolerance we have to work with in. We cant change it. This spoke to me cause I am currently struggling to get active and healthy and loose weight. Liberty speaks about ” is this healthy for my body” She can think about the whole foods, the proteins, the raw materials, and if something is nutritional. Her over all health, Not just PKU. Something that is healthy for PKU is not necessarily healthy for someone with out pku. Our food is full of sugar. I love that they mentioned this.

Jack talks about how most people are healthy later in life then not so healthy as they age but wanting to go in reverse. I felt like he was talking to me. I cheated. I lied. I didn’t follow my diet, I ate things I should not have. I had really high levels. Now that I am a mom and older and wiser I want to do better, be better and be healthier now. I want to learn to be active and healthy and be a role model for my children. I have a more active role in my health now and my activity. I have a better understanding and I want to get into shape .

Liberty’s struggles with being hungry, noticing her mood fluctuations, dropping a few F bombs, shaking her head and grimacing her face while drinking formulas was real and true. She is able to recognize her emotional relationship with food. That she enjoys food and looks forward to it and to her its enjoyable and an experiance. With PKU you are eating cause you have to. Its edible. Its healthy for us. we have to eat. Not because we enjoy it.

I really apricate Liberty’s frustrations with doing all this prep work and cooking and the time it takes and how things like pancakes dont always turn out. Or after all is said and done and it just not as enjoyable as you hoped. Leading to disappointment in foods and meals. I have cried many tears over wasted time over dishes that havent turned out and I’m just so hungry. I throw it all away and grab a box of real rice.

I have banged cupboards, slammed doors, thrown pots, broken bowls in frustration. Dropped my fair share of swear words. But that is life. That’s real.

When Liberty talks about how the go to is pasta I laughed. I alternate between pasta and potatoes every night. 4 days a week is pasta. There is only so many ways to dress up pasta! There is only so many sauces we can have, or things we can add to make it filling. I do have to say though Pasta is my favorite low protein food. it is my go to and the most filling. I eat a lot of pasta and my waist hates me for it.

I loved that the adults where real , raw open and honest about their struggled with mental health, anxiety, fatigue, and how bad or high foods make you feel intoxicated.

The point of view from the food developers about the difficulties of providing low protein food and producing quality foods with healthy raw materials vs productablity was an interesting perspective that I hadn’t realized before. I liked hearing from them and their stories just as much as I did the PKU adults.

I am glad the film included families, parents , advocates, and normal people. It was diverse and all connected. Every perspective was important to share.

I am so glad to have seen this film. That is exists. I hope those watching it come away with a new appreciation, a new understanding and I hope the film reaches those not familiar with our way of life and teachers them something new.

I too hope that one day , I wont need to give my “PKU monologue ” and when I say I have PKU , they will get it. That it will be come as normal as saying I have diabetes and having an “oh,ok!” reaction. That they just get it.

I would love it if my non pku family and friends would watch this film for me. It is able to say all that I cant . It has give adults like me a voice. Inside and outside the community.

I hope that jack and his team go on to make it a series and feature different types of PKU like Maternal PKU. OR feature patients on different treatments and their experience’s. Giving us all a voice . Seeing it on the screen is so different then reading it and easier to make it more relatable and real. Real people real life. I hope that by bringing our stories to the media and to film connects it with every day people and spreads awarness that creates change.

For everyone who watches it, is another person who gets it and makes it a little less rare.

To Jack and his team.

From one PKU adult to many others, Thank you , Thank you so much.

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Baby Number 2 / Maternal PKU journey 2, facebook, Madelyn, Managing the diet, MPKU Journey!, News, Social Media, That's my PKU life

PKU Awareness month means, Maternal PKU awarness too!

Posted on by Amanda Horner

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For #pkuawarenessmonth I will be mainly focusing on the miracle and wonders of maternal PKU Syndrome. All of my life I was told I would never be a mother. Hearing those words does not make the dream die, it does not take away the wish. It does not take away the hope. It does not prevent you for wishing and praying. As the years melted into each other the want never went away. In 2006 I was told for the first time, it was possible. That it was alot of hard work, that it was not for everyone. Well neither is motherhood, pregnancy or parenting. Hard work does not scare me. When the want is there, you can do anything you set your heart and mind to. I relate to those who struggle with infertility and the want to be a mother but for other reasons. I relate to the heartache and the deep deep passionate and consuming want. I relate to the heart work. Though its not doctors tests , injections and treatments for fertility. Its keeping my blood , my body, my brain and my uterus from being toxic.

For many PKU women , its months and months of planning. For many its returning to diet and treatment. Its many months of preparing the body. For preparing your brain. For many its withdrawing from toxicity of high phe levels and side effects. Its adjusting your body to major food changes, to major life style changes.  How do they do this?

With the recommended maternal pku pre conception diet and treatment.  It is highly recommend that any women with PKU who wants to have a healthy sucessful pregnancy and healthy baby follow a even more restricted treatment then normal , to get their phe levels even lower into pre conception range and keep them there for 3 to 6 months prior to conceiving and then the duration of the pregnancy.  I didn’t have this chance. I did things back wards, looking back its totally way harder.  both of my pregnancy’s where unexpected and unplanned. But very very much wanted. I prayed to god, I prayed to my deceased grandparents, I prayed to my grammie in heaven. I talked to her regularity. I dreamed. I wished. I wished on ” the first star I see tonight”  when the clock stuck 11:11 am or pm. When I had something lucky. I hoped. I held on.  I pleaded, and I bargained. Please god, let it be me one day. Let it be my turn. Bless us. Choose us. I promise I will give it my all.  Please let it happen one day. Please change his mind, please want him to want this to.

Both times I found out I was pregnant my levels where very high.  I was not off diet, I wasn’t compliant. I made allowances. I ate rice, and mashed potatoes, and corn and hash browns. Vegetable sushi, peas, beans, and sooo much rice.

I indulged. I did not weigh my portions. I did not keep track of my intake. I made allowances, and made excuses. Its to hard, Its not fiesable, its not sustainable, i’m to hungry. Its only me that suffers the side effects.  Im not hurting anyone but myself. I will do better tomorrow. I will eat less in the morning so I can eat more later.

Having to crash my levels down with in a week, having to re learn the diet, re learn how to cook low protein recipes, how to measure everything. How to track everything. All at once, plus come off anti depressants , anti anxieties and pain medications all at once. If I could change one thing, I would have done better at looking after myself, managing my PKU and actually planning for my babies I would have. But you know what they say about could have, should haves? and if you change the past you might not have the same present or future. I would not change my life for anything.

For I am a mother.

The fact that my daughter is here is truly a miracle in its self,  Life is a miracle, growing, creating and giving life is a miracle. Pregnancy is a miracle, but then add my PKU on top of it.

Now here I am about to bring another baby girl into the world. The weight of it is not lost on me. Through all the highs and the lows, through all the tears and sleepless nights, through all the struggles and all the ups and downs, through the smiles and the I love yous, The way my precious girl looks at me, I wouldn’t trade a thing for this life ive been blessed with.

Its not always easy and sometimes we get lost in the moment and we forget where we have come from and anxiously worry about tomorrow. But its worth it. Its worth every single moment. Id gladly pay for every second through this life and eternity.

There is no bond like that of a mother and her child. The bond I have my daughter is everything I ever dreamed of.  I cannot simply express in words the depth of my love for her . I see it reflected back in her eyes and its so powerful.  It is deep and beautiful and powerful.  The way she holds my hands, touches my face, the words that she says, the joy she experiences , the happiness she is and gives, that she lives and shares.  Its worth it all.  Now that she is such a fluent talker, her vocabulary really floors me. She talks better then some 4 and 5 year olds I know.   She really expresses herself, she speaks her feelings and her thoughts and the wow the stories she tells me. The way she tells me she loves me, and how i am the best swimmer ever! make me burst with pride.  How even though she is a very strong willed , independent, vibrant , busy 3 year old, she still needs and wants her mama. She still wants our cuddles and our talks, our hugs and our kisses.  I will always give her all of me.

It excites me to hear her talk of her baby sister, the stories she tells me about how she will be a big helper, how she will hold and change ” her baby” and all the things babies do and how her baby is in my belly. How every day she tells me what she wants to name her baby.  It makes each day that I struggle with this damn life, this damn diet, and these damn foods worth it.

Each day when I have to test my blood, and drive it to the lab, Each day when I sit down at my computer to record every gram of food I have eaten, when I plan my meals in advance,  when i make my food, prepare my formula. I am reminded why. My daughter is why. Both of them. For every high risk OB appointment, every midwife appointment, ever extra ultrasound, trip to Vancouver maternal fetal medicine, every email to dietitians and specialists, every panicked phone call, every kick and roll. Every thing I am doing its to give my children the very best start in life.  To ensure their health and ensure their futures. The literately weight of their life hangs souly on me , and what I eat.

They say being a parent is always putting someone else before you, and I do that by watching and weighing and counting every single thing I put in my mouth every single day and more.  I do it because I am so much more then me. I am their mother. I am a parent.  I am a partner and a wife.  This is just one part of my life and my daughters. This is how I give them the start in life they need and my care and my devotion and my love and my hard work grows with them and my role changes. From the day they are made, to the day they are born. To all the years to come, I give them all of me.

If anything having PKU has taught me so many life lessons. It has taught me hard work and sacrifice, it has taught me patience, it has taught me how to be strong. It has taught me how to give, and how to be a voice.  I use my voice in hopes of inspiring others. To help even one person know they are not alone. To provide support, to provide education, to spread awarness.

Many wonder why I do this year after year . Why I share my story so personally. Why I am so open, why I blog, Why I volunteer for CanPKU , Why I plan fundraisers and events, and why I post soooo much about PKU.

Well every year that goes by I am grateful for medical advancements , for changes in treatment and new research. For being alive and being healthy. For new born screening and I am proud to be able to use my voice to spread awareness . For each new friend I’ve made through out the year , for each new follower who does not know my story , for each new baby born , for each new diagnosis , for each new family effected , and for each new maternal pku mother…I share for you. If I can help just one new person by sharing , that is one more person who feels supported , one more person educated. And 1 by 1 more people will be aware and pku will be less unknown , less scary and less rare !

Remember, together we are all #PKUSTRONG

 

 

Happy PKU Awareness month!  thanks for following along. I look forward to connecting with many of you this month through social media. Through Facebook lives, though live questions and answer videos, through Instagram and Facebook.  Please feel free to share, write me a question you would like me to answer a topic you wish me to cover!

 

 

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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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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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News, Social Media, That's my PKU life

23 and Me

Posted on by Amanda Horner

Unless your living under a rock, you should have heard by now of the genetic testing kit you can order online and have delivered to your home. 23andMe is a privately held personal genomics and biotechnology company based in Mountain View, California.  It is a saliva test that you can do at home. You spit into the vials they send you and then you mail it back to their lab to be tested.  It tests your ancestry and Genetics. It gives you your risk assessment and carrier status.  The Genetic health reports can predict how likely you are to develop something like cancer, Parkinson’s, Celiac, Alzheimer’s  .

It gives you wellness reports. Some examples on the website are : alcohol flush reaction, caffeine consumption, deep sleep and genetic weight. With various others.

It has trait reports such as ; bitter taste, cheek dimples, early hair loss, cleft chin, and many many others.

 

The last section is the carrier status . This is the biggie. It has various major diseases listed like Maple Syrup Disease, cystic fibrosis, and there it is 33 from the top.

PHENYLKETONURIA

with the description read as ; 23 variants in the PAH gene; relevant for Irish, Northern European descent

Now, here is where my problem lies.

As many of you know,  I have been a vocal advocate for PKU and a avid member of the online community. From writing this blog, to creating and ad-mining many facebook groups, support groups and that I help CanPKU lobby in government and in PKU treatment.  I created the very FIRST PKU group on facebook when facebook itself was very new.  Today our group 6,000 members. We get requests to join our group daily.  Multiple requests. So much so I have a team of volunteers now to help monitor the group and admission requests. we have turned on the feature where every member request has to answer questions about PKU so we dont allow spammers or frauds.

However we have been inundated with request from people who have taken this damn test and now fear they or their child have PKU . and after doing research on the internet they are convinced they must have it .

** Let me be clear, I am more then happy for people who use this test in a responsible way and if they learn that they or someone in their family is a carrier. That useful knowledge to have.  I am all for supporting Carriers and their family, as each carrier is more potential for another child born with PKU , and a reason for the parent to insure screening and results are given in a timely manor.  Since newborn screening is optional in many countries, if someone knew they are a carrier , they will make sure to opt into newborn screening.

What bothers me, is people who dont understand this test. Who do not follow up with a medical team to have the results interpreted.  The people who think ” oh maybe this is why i have headaches when i eat meat ” or ” oh i have bad BO and an upset stomach when i drink milk, so i must have PKU”

This post is not directed at people who discover they are a carrier of PKU and are seeking actual information, support and education. This post is directed to the perfectly healthy people that have been normal their whole lives who take this test and fear they have PKU. That even when they have come to our group, and asked questions, messaged an admin for clarification .  That when we have provided information , explained the difference between carrier vs patient of PKU and what the statistics are they still argue us. When we clearly explain you cant be diagnosed through a test like this to actually have PKU. PKU can only be diagnosed with newborn screening and that you may only be a carrier if this test comes back positive.

We try to educate every one we can as we strive by the motto, that ” one more person who understands PKU is one step forward from being  rare and unknown”

These are the  people that I am talking about. They have let fear guide them and they are convinced they have PKU when they dont.  They dont seem to understand that PKU is tested for at birth!!!!  That yes, this test can tell you if you are a carrier, which means you could have a chance if your partner is also a carrier of having a child with PKU. It does not mean your child does have PKU and you never knew it. WE have had so many people message us that their child has autism or ADHD so they must have PKU too.

There are many forms of PKU.  Though it may be possible to mis-diagnose or delay a diagnosis of hyper PHE or mild PKU , it is very rare.  The consequences would not be as severe with these forms of PKU, HOWEVER  Classical PKU  cannot be diagnosed later in life. Classical PKU  is very serious. If not diagnosed at birth ; before the baby is 6 months of age the baby  would be completely mentally impaired with irreversible brain damage.

If they are just finding out now that they have PKU  or their child had it and was a delayed diagnosis they would have serious impairments. Serious handicaps and serious brain damage.

I have had full out arguments from these people who are clearly adults living totally normal lives other then maybe an upset tummy when they eat to much of a food, or a headache when they eat gluten , or some other stupid reason.

We try to explain to  them that for their age, they would not be just facing a diagnosis now, that they are more then likely just a carrier. With no symptoms. That if their was a chance they had Mild PKU or Hyper PHE this test cannot diagnose it. IT can only tell them if they carrier of the gene.  Only newborn screening can diagnosis so if they really want to be sure to follow up with a doctor.

We offer them education and information on being a carrier and what the statistics are and how it all ” works” but it has gotten so argumentative and even down right rude sometimes we have had to completely block people.

Now we have updated our group description for new members to see before they even try to request. I have even updated the questions members need to ask before they can be added to the group to ask  how they received a diagnosis and explain they cannot be diagnosed with PKU with a 23 and me test or any saliva test.

Yet we still get multiple request a day. It has created much confusion and fear in the public. While I understand that these kinds of tests may be helpful and interesting for the individual, on a larger scale I really feel they need to be monitored by your medical team , or at least you should be required to go over your results with a doctor before you take to the internet or panic.  The level of miss information I have seen from this test is scary . Specially when dealing with such serious life altering diseases.  it has lead to fear, panic, mis understandings and wrongful information being given. I really feel you should only have medical advice from your doctor. I try my hardest not to give medical advice. I give advice based on my own experience and information and always advice they follow up with a medical professional.

I myself strongly believe in being informed and having all the information and tools available to me, i believe in informed consent and power over my own medical needs. I believe in being educated and understanding.  I dont support misinformation or fear mongering.

I get the draw behind these tests. I would want to know my own results.  Specially when these tests arent regularly offered to healthy people until there is a reason to think otherwise, or in most places they are simply not covered or cost to much if you dont have insurance like places in the USA.  Then the information is seeked out .

I however choose to educate myself , be informed and understand that you cant and shouldn’t diagnose yourself based on these results. That if a result concerns you please have it interpreted by a medical doctor.  Just because something comes up dosent mean you actually have it. Yes you could be a carrier but please dont panic and start getting on doctor google and joining support groups , or trying to diagnose others. It is insulting to those of us who deal with this daily, or have been diagnosed at birth, had our parents taken through the diagnosis’s having their world rocked, and raising us with treatment , to living this life.  We know what PKU is. We know what can happen when your not on diet. We know how it effects our brains. So when you try to join our group because a saliva test told you that you have pku-  but your brain is normal and healthy and you have eaten meat and drank regular milk your whole life and you are not in a wheel chair or need someone to help you with regular activities of daily living ( like dressing yourself or feeding yourself ) your going to make a lot of people upset.  Then if you go telling people you have PKU and you dont, your going to give the public a false representation of what living with PKU is like. You are going to un do our hard work to be recognized and improve our quality life and get out treatments funded. Your going to teach people who dont know any better that its not that bad, its not that serious, its not that big of deal and that we dont need help.

PKU is already so rare, and considered a orphaned disease.  Many in our community have dedicated their lives to improving treatment and quality of life for loved ones with PKU or for themselves.  One of our goals is educating the public on what phenylketonuria is really , so that we can gain the support of the public , medical professionals, scientists, researchers, pharmacologists,  and others . SO they take notice and get interested enough to make a difference.  To develop new foods, new treatments, possibly even one day a cure.  This is why we cannot accept anything that can jeopardize this. Such as someone misunderstanding tests like these.

So please, if you or someone you know , has or is going to use this test, Ask them to please seek  interpretation from a doctor and education. Or !!! Even better, if you have a result that you are worried about, request further testing from a doctor before you self diagnose or try to treat yourself.

 

thank you for listening!

 

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