That's my PKU life

Blame it on the PKU

Posted on by Amanda Horner

I have a feeling this blog post may push a few buttons but I need to get something off my chest!

Not everything is because of PKU!!

I know right? To think! What could I possibly mean? well let me elaborate. I am so tired of reading about how everything is because you have PKU.  When you go to a new doctor, or go to the clinic even for a cold or some sort of pain, god for bid you get admitted to the ER and everyone panics because you have PKU. Then they spend hours wasting time making sure its not related to your PKU, when they could have just asked you.  Honestly, I know more about my PKU then most doctors around here. But a doctor will never admit that. They have to know everything, they cant ask a patient for help, even when I have lived with it all my life, and they have never heard  of it.

That is just one example from my own life, but the cause behind this post today is from my annoyance with the adults who blame everything in their life because they have PKU.  Failed marriages, loss of a job, headaches, unemployment, to many bills, bad relationships, arguments, and their attitude are all because they have PKU. They blame everyone else , from there parents, to how they are raised, their families, Their employers an even their doctors and PKU clinic staff.  I understand the bitterness and hard feelings. It has not always been as it is now , and many people feel like they had to pay that price.  But we cannot just sit around and point fingers. We have to be the change we want to see.  If we want something to change then we need to stand up and make it happen and just not sit around and point fingers.

I know its hard when you are effected by high levels, and you cannot always see things they way other people can.  I get so frustrated though when I am told I don’t understand or I don’t get it. That I have it easier and the kids today have it easier.  I am 27 years old now, and I have had my struggles. I have been knocked down to the point of crying on the floor of my apartment while cole holds me and rocks me in his arms, with high levels and side effects.  I have not let it get the best of me and I do not blame it on being born with PKU. I may have resented my PKU as a teenager, but why? its apart of me.  It helps make me who I am and I consider myself lucky, It could always be worse. I am blessed to have not been born with something worse. Id rather have PKU than have something like CF where the expected outcome is grim.  Id rather have PKU and control my diet and my PHE than have something fatal like CF or cancer. At least with PKU I can still live  a fairly normal life, I am not mentally retarded and I have a good quality of life.

I recognize its not with out the struggles and the ups and downs, it could be better but it could be worse. I choose to strive to do my best to make it better.

Dont get me wrong, every day is different just like everyone’s perspective. But I do not see the point on letting it hold me back. I am not with out my “I hate PKU ” moments.

I know its really hard for those adults who where taken off diet when they where young. Its not because they where “guinea pigs” it was not because there doctors wanted to make them suffer, thats the way it was. They thought they knew best, that was the treatment of the time.  Its sad and I am grateful for those Pioneer PKU adults who paved they way for research and  new treatments.  Everyone did what they thought was best, its in the past and its time to move forward.  We are so lucky to have the treatments and the research we have now.  Instead of being bitter and resentful, indulge in treatments today, try new foods and formula. BE thankful we have come as far as we have and enjoy the standards we are lucky to have now.  Even with all our new products , new formula, new treatments like KUVAN and Peg pal , there are a lot of places and people dont have the same aces. So let us celebrate and be grateful and recognize how blessed we are. Lets all help each other and continue to push PKU forward so we all can have the same acess and benifits.

That however is my 2 cents. My rant for today is over.

Thanks for listening.

 

5
That's my PKU life

Its the little things…

Posted on by Amanda Horner

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Sometimes its the little things, things that most people would take for granted that impact our lives. My “little” thing this morning is a first time,  new experience. For the first time ever, I have all these low protein products that I have never had tried or aces to, and today is my day off after a rotation of night shifts and I woke up early with a plan in mind!

Today I tried my hand at making my very first low protein omelet, sausage and bagel. I used the PKU perspectives Egg mixture for the omelet, and I added white onion, green onion, red peppers, mushrooms and a little dayiah cheese.  For the sausage I used the pku perspectives mushroom burger mix and formed it into a rough sausage shape. They may not look pretty but It tasted great! The bagels are the bigger bagels, onion flavor from Cambrooke foods, topped with a little cinnamon spread.

It is moments like this that I truly appreciate how far the treatment of PKU has come, and how products like these really impact my life. Where most people take for granted what they eat every day for food , specially breakfast. Alot of people don’t even eat breakfast. In fact I didn’t really either for a few years.

These new products and new inventions help give me more variety and opportunities that I never could have drempt possibly just a few handful of years ago. I feel so blessed.  My breakfast options have always been very limited to sugary kid cereals that are lower in protein such as Froot loops, captin crunch, and corn pops and bread. It has only been for a handful of years that I have begun making my own low protein bread.   I have always found breakfast the most stressful time of day for myself, with limited options . I would easily get sick of eating the same thing day in and day out for breakfast.

I didn’t even no about the egg mix until the pku conference in Vancouver and the mushroom burger mix maybe a month ago when i first tired it in my spaghetti. I have been using it as a low protein ground meat for my spaghetti and just loved it. Last night I thought up the idea to form it into sausages after seeing some dishes my friend Brienna has made for her PKU son Hayden.

My kitchen is a mess, and there are dishes every where but , I am so happy , and full!

This was a great way to start my morning , and I am full of hope for the future and how I manage my PKU and my diet, and I am so thankful to all the low protein companies and their hard work making our life a little bit easier and a little bit more “normal”

 

 

3
Managing the diet, That's my PKU life

Depression Hurts

Posted on by Amanda Horner

My name is Amanda and I have depression.  actually many years ago,  I was diagnosed with Chronic Major Depression and Panic Disorder.

On June 24th 2012 I made the difficult decision to accept my depression and to begin treatment with ant depressant medication.  I had been battling Chronic Major Depression with panic disorder and panic attacks for a number of years.  specially after my car accident in 2008. when I was hit by a car walking my bike home. I was hit while walking and had had knee surgery 15 weeks prior, the accident had a serious impact on my physically and changed my life for ever.  Between that , and other physiological troubles and trouble staying compliant with my diet, my life was a mess and the depression robbed me of the quality of life that I deserved.  My life was a constant battle with my emotions, self confidence and image. It was a merry go round of ups and downs. I could barely leave my house with out a panic attack.  spent many years being dependant on cole for everything. I refused to drive and could not hold a job.  Cole would work all day and then come home and have to drive me around because  I could not be on my own and could not drive.

Over the years I had tried managing my depression with various means such as counselling, anti anxiety meds and various anti depressants but I never stuck to any treatment and had a hard time admitting I needed help. Also Cole is against medications and being on pills so i tried to manage on my own and keep it to myself just how much I was struggling and I could not really talk to anyone about what I was going through. I felt week and like a failure.  I felt like I let my friends down, my family and coles family. I did not like myself. Could not understand why cole put up with me , or why he stuck around.

I hated myself and how my life was going. I felt so weak and when friends and family around me told me to get over it or try harder I took it hard.  telling me to do something about it or just do it was not helping.

I had talked to my pku clinic and family doctor many times about it , and they always recommended “pills” but i could not get around the astigmatism of depression and “pills”  so i tried managing on my own by pretending I didnt need help or have a problem.  The anti depressants i had tried through out the years I never stuck to , I had every excuse not to, to many side effects or not working, or when they would work id take myself off them after a while. Not being able to justify being on pills but also figuring i didnt need them any more and could manage on my own.  As a nurse I know how important it is to stay on a medication even when its working, you cannot stop. But I told myself these things anyways.

Finally in 2012 I sat down with my clinic one more time and my dieticians told me, it was not my fault and just like my brain needed my formula and my low protein diet, my body needed the pills to regulate the serotonin.  I had a chemical imbalance in my body and though my depression started with circumstances and life events, adults with PKU even when on diet do not make enough serotonin and its common for pku adults to struggle with depression.

So cole and I had a very long talk and talked about the pros and cons, just how much I was struggling to have a normal life and how my depression has controlled my life for so many years, and our relationship.  How much weight I carried on my shoulders for letting everyone down, how bad i felt about being dependant on him, for not being able to be independent and to look after myself on my own. Also about how badly the panic attacks scared me. I had a break through and realized i could not keep living my life the way I was living it. I wanted better for myself and for us. I wanted a brighter future and I wanted to be coles equal and to be independent on my own. i wanted to hold a job, to not live my life in fear and in the chronic pain I was living in. I wanted to spend my life with him , to get married and have children, to travel and be a friend people could be proud of. I wanted his family to be proud of me and my own. I wanted to deserve him and his unending love. I did not want to make him resent me or one day realize he didn’t want this life and to be held back like this.

So I went to my doctor and on June 24th 2012 I started on a 10 mg dose of Ciprelex. i had side effects for 2 weeks before i started to notice the changes.

1 year later I feel like I am the strongest I have ever been, I haven not had any panic attacks. I am more active. I feel so much more free. I drive, I have my own car, I work . I have had the same job for 10 months and I have been working in a full time night line since March.  I go out during the day on my own and visit my few new friends or even just on own. Going to the grocery store even is a big deal to me. because I can do it on my own. having my own money and my own car has opened up doors for me. I am proud of all the changes in my life. There has been so big ones to.

Moving to a new town and a new city being the biggest.  Leaving my friends and family behind and starting  a new life , a new chapter and a fresh start. This is something I never thought id have for myself. Now we own our first home and we are doing so well. I am truly happy.

We are planning on travelling this year, and we are talking about starting a family sometime in the i hope not to distant future.

I know now, I could have never made these changes on my own, it was not just the pills either. The support i have had from cole , our friends and family have gone along way. I see things differently now to. I am a much more positive and drama free person. I feel stronger and  I walk a little taller.

I don’t talk about my depression, or what I have gone through to often, in fact, until this post, most people , friends and family probably didn’t no. Well I am sure they knew I had depression and anxiety from my actions and my life, but I have never really come out and said it , or that I am on medication. However I am no longer ashamed. I cant help it and its apart of me. Just like my PKU. But it does not control me any longer, because I made the decision to take back my life.

Its been a long journey , and a lot of work. I can see the light now. I had hopes and dreams and I know what it is like to be truly happy and I appreciate my life, my family and my friends. I am not ashamed of my past now and who I was . I had to get through that to be who I am today.

I know now, no matter what happens, I will be ok.  I have learnt to live my life and take one day at a time. every morning I wake up, is a fresh start and a chance to do what I didn’t do yesterday.

 

2
That's my PKU life

Deja Vu

Posted on by Amanda Horner

I am currently reading ” My PKU life” By fellow PKU Adult Carrie Hall. According to my tablet I am only 9% into her story. I am just starting the chapter on her highschool years.  I am already so in love with this book, I am so grateful that Carrie decided to share her story and to write this book. Its like shes speaking to you, having a conversation and casually telling you about her life. They way she writes and how she describes her memories. I listen to her words and I think oh my god! this is so similar to my life. SO many same emotions and experiences. How can any one out there feel the same as me and have gone through a lot of the same things. I read her words and I feel so connected to her. Its a powerful read and I highly recommend it. It would be very useful to anyone in the PKU community but I speaks to us adults , to our generation , to our age group , on a hole different level.

I wont give away to much , but I will certainly be blogging about it when I finish. So be sure to check back, or better yet! download it! both of her books are now available as E-Books. On iphone and android. They are on kindle so you can download the kindle app in both play stores , and buy the books from amazon.com.

Carrie, if you are reading this, thank you! I cant wait to read it all , and your second book too!

 

 

0
Low pro food / cooking

Sandwiches, Sandwiches,

Posted on by Amanda Horner

2013-06-10 13.21.41 2013-06-13 13.59.07

 

Well last weekend at the seminar I had my first ever sandwich, and I brought home a loaf of cambrooke homestyle bread. Its the first #Lowprotein bread I have ever had that I can stand non toasted. Most of the #Lowprotein bread is crumbly, tough, hard and can only be eaten toasted. So I am so excited to finally have a bread I can eat as sandwiches . You have no idea how exciting this is for me and how convenient its been this rotation of my night shifts.  I  have been experimenting with different ways to fill it and what toppings to use. The first night I had a lettuce, onion, cucumber and tomatoes sandwich with miracle whip. The second night I ran out of lettuce so I brought 2 slices of bread to work with me and a tupper wear with some toppings. I toasted the bread and used miracle whip, a cambrooke swiss cheese single, cucumber, onions , salt and pepper!! so good!!

Last night I had lettuce, pepper, onions, swiss cheese single, and alfalfa sprouts and brought the same tonight.

You see this is a pretty big deal to me! I still remember box lunches as a kid. I had “cracker sandwiches” with jam and butter, applesauce, fruit snacks and my “pink” phenyl free formula in a thermos of Troll or Disney , maybe little mermaid and lion king.  My formula was pink because my mom flavoured it with nestle strawberry quick.  I was not aloud outside to play until all my lunch was eaten, and sometimes If I didn’t like it I would miss a hole lunch hour and play time. I was teased because of my lunches and not sharing . Then this one time in grade 1  , while all the other kids where playing outside, I hit my thermos over with out the lid on and my pink milk spillt all over the “pod” of desks I was sitting at. I remember how thick and filmy it was. as well  how bad it stunk. The duty monitors helped me clean it up with paper towels and they had to call the teacher. I was horrified . When all the kids came back in from lunch hour,  the room stunk so bad and everyone was asking what that smell was. The teacher had to tell them my “special milk spilt” and they had to clean out there desks cause some of my milk spilt on there rulers and erasers. They had to throw them out.  Needless to say I cried. The rest of my early elementary school memories are foggy. After my parents divorce, I  changed schools in grade 3.  To this day if I run into people that I went to school with in grade 1 they ask me if I still drink that “stinky pink milk” and they called me the pink milk girl. Some of them even ask me why I had to drink that milk anyways.

So needless to say, taking lunches to school was traumatizing and inconvenient. I stopped taking lunches all together in highschool and was cheating so would eat  vegetable sushi or rice and even chow main from the mall.    later  on with the high level symptoms and my hole stint with not eating,  I skip breakfast and lunch all together. Only  eating when I got home from school. I also was pouring my milk down the drain by then too.

It was not until I grew up and started working and later in  college , that I began to take lunches again. I also started eating breakfast again after I  was admitted to hospital and didnt have a choice.  Taking lunches as an adult was even hard to because I have to set a day aside for baking and cooking for the week, if I do not than I dont have good choices to take to work and end up taking higher foods. Soup was easy to take but higher in phe, least the ones I like are.

So, having these sandwiches on night shift has been so cool! I love them and they taste great. I am out of bread though so tonight will be my last one until I have some extra money for a #Lowprotein food order.  There are alot of pre made foods I am wanting to order this time around from cambrooke , to make my life easier and not have to worry if I don’t get my baking day.

I really love how far low protein food has come thanks to companies like cambrooke foods. They really make the diet easier , well when you can afford them that is. I still dream for the day when I have unrestricted access to all the foods. To feel normal just being able to pull something out of the freezer or fridge and not have to prep and bake everything from scratch. TO have more variety of foods.  Its weird to think , but I dream of a day where I can have a deep freeze full of #Lowprotein food , and not have to rely on lower phe regular foods , and fruits and veggies to fill me up. I want to be able to go to the freezer pull out a loaf of bread, cambrooke camburgers patties, corny dogs, low protein chicken nuggets, pitas, muffins, bagels and more . To have them taste like real food and to enjoy food!

These sandwiches are just the beginning!

 

 

4
PKU Book Project

Project Update,

Posted on by Amanda Horner

For those of you who have been in contact with me and are taking part in my latest pku project:

I have made some changes to the project. I am increasing the word count to 3000.  This means your word count can under or up to 3000 words. Also I am including another group.

PKU patients using alternate therapies such as KUVAN, LNAA’s or Peg Pal.

Deadline has been moved to the first week of August.

Be sure to check back to my blog periodically for other updates.

 

 

For those of you who would like to be reminded about the project here are the details again :

I am looking for individuals who would like to share their personal stories and I am looking for NOW 11 groups of stories with approx 6-10 in each group.

The 10 groups I am looking for are :

Section 1 : New Diagnosis ( THIS SECTION IS NOW FULL)
Examples are : a mothers perspective,
a fathers perspective
the new pku parents.

Section 2 : The Early years ( from a parents perspective)
Examples being : “firsts” first foods, first clinics, first tests, first teeth ext ect
a growing baby
toddler adventures- raising a toddler with PKU
starting kindergarten
the elementary years

Section 3 : The Teen years ( written by teenagers with PKU )
Taking the reins – taking over the diet from your parents.
the diet
cheating
middle school/ high school
friends / relationships

Section 4 : The college years – (Written from pku patients)
post secondary education and dealing with diet, door life, classes, social outings ect ect.

Section 5 : Adult life – ( ADULTS WITH PKU THEMSELVES!)

careers, working, cheating, dating, relationships, marriage, families, traveling, inspirational stories.

on diet and off diet.

Section 6 : Maternal PKU ( WOMEN WITH PKU WHO ARE PG OR HAVE BEEN PG )
Stories from PKU moms and their pregnancies

Section 7 : PKU Pioneer Adults
Older adults off diet, returning to diet and the struggles they face.

Section 8 : PKU Around the world
Stories about how treatment differs around the world, and clinics, tracking , foods , policies ect ect.

Section 9 : PKU FROM A FAMILY MEMBER’S PERSPECTIVE, SPOUSE, SIBLING, GRANDPARENT,  OR CLOSE FRIEND)

Section 10 : Stories from medical professionals who treat or work with PKU.  ( DIETITIANS, NURSES, DOCTORS, PERSONAL TRAINERS, COUNSELORS, ADVOCATES, ECT ECT ) What inspired you to work with PKU, about some memorable experiences you have had working with PKU , the changes you have seen since beginning work in this career, how care has involved over the years. what your hope are for the future and your thoughts and feelings on the current level of care and access to treatments.

Section 11 :  PKU and KUVAN , or LNAAs and Peg pal.

If this is something you think you would be interested in working on me with please send me a email for more details . Stories must include , name, where you are from , a title, your age , or age of person with PKU. Stories are being expanded to be under 3000 word count. I am available for proof reading  and assistance with editing.  The deadline for submissions are the first week of August.

my email again is amandacosburn@gmail.com

0
That's my PKU life

To my dismay,

Posted on by Amanda Horner

Well to my utter shock and dismay, I have not being doing as well as I thought I was with my intake. I have been using my “my pku diet” app for 2 weeks today. I have done mostly ok with it, still entering alot of information manually. I missed 2 days out of the 14. I have been eating alot of my own low protein baking but to my horror, they where not as low as I thought it was. 

Let me explain. 

I began my efforts to get back on track June 1st with a blood test on June 2nd to see where I was at. That result came back in at 8.0 I was pleasantly surprised , I was expecting higher. 

So tonight, I  just generated a report of my intake for the past 2 weeks and this is what the graph has informed me of : 

June 1st : 896.2 mg phe , 2402 calories 

June 2nd : 698.5 mg phe / 2289 calories

June 3rd : 751 mg phe / 2349.9 calories

June 4th : 486 mg phe / 2683 calories

June 5th : 321.3 mg phe / 1678 calories

June 6th : 314.5 mg phe / 2058 calories

June 7th : I forgot to add in my dinner. 

June 8th : completley forgot this day. 

June 9th : 509 mg phe / 2272 calories

June 10th : 414 mg phe / 1531 calories

June 11th : 798 mg phe / 3090 calories

June 12th : 625 mg phe / 2735 calories

June 13th : 568 mg phe / 2534 calories

 

I am just in total shock. With intake values like that you would think I am eating really high foods . The only thing I have been really eating are my low protein pizza pops. but multiple pizza pops. And then for dinner low protein pasta salad. 

all thought I am so dissapointed and ashamed of myself , doing these records shows me where I am going wrong and where to make changes to get back on track. One thing is for sure. no more multiple pizza pops. 

My goal going forward is 350 mg phe / and 1500-1700 calories. AS you can see, this is going to be a huge challange for me to control my portion sizes, to weigh and to track consistently. I am going to have to suck it up and do the hard work of prepping and planning and having more variety. I will be relying heavily on new recipes and increasing my fruits and veggies. 

I have never been able to stick to this long enough so all the encouragement and support is appreciated. 

Every day is a fresh start right ? a chance to start again and thats what I am looking at today as. Taking it one meal at a time from here on out! 

 

1
Low pro food / cooking, Managing the diet, News

PKU medical Treatment Coverage in Canada.

Posted on by Amanda Horner

There has been alot of discussion lately regarding coverage of our low protein medical foods , and formula across Canada. Every province seems to be very different.  Despite our reputation for universal care in Canada, we are lacking in the treatment of PKU. Though British Columbia has a faling grade on the report card for access to treatments.  As i mentioned in my post about the seminar I attending this past weekend, Ontario is now providing coverage and aces to KUVAN and Saskatchewan is rumoured to be following next. 

Kuvan was approved my Health Canada in 2010 and is being used in many countries around the world and even some provinces here in Canada. The BC Children’s clinic is currently using it in the treatment of children in a study. Also there is the 106 study of its effects on depression , anxiety and cognitive functioning. 

in 2012 Canadian PKU and Allied Disorders put together a summery of the coverage in Canada. Nicole Pallone has graciously shared that list with me and it as follows: ( This list does not include KUVAN Or LNAA therapy. ) 

 

British Columbia :

Any formula recommended by clinic dietician is covered for anyone with valid Provincial
Health Care; shipping is covered for patients not located in Lower Mainland. No low
protein speciality food coverage. Product available from the Special Product Distribution
Center (located within BC Children’s hospital). $40 monthly stipend for low protein foods available to those on welfare.

 

Alberta:

Formula and variety of speciality foods are covered for anyone with valid Provincial
Health Care, shipping is not covered. Items are stocked within hospital. Cambrooke
Foods products are available to patients, orders placed through clinic and shipped to
door. Currently, “new” CBF items are not covered.

 

Saskatchewan:

Formula and approved foods are covered for ALL patients with valid Provincial Health
Care. Patients order formula directly from Speciality Food Shop and low protein foods
from National Food Distribution. Shipping is covered for all orders. Adult patients are
referred to AB or MB for follow-up care, although still receive formula and food from SK.

Manitoba :

Formula is covered to anyone with valid Provincial Health Care, shipping covered to
those not living in clinic area. Patients are responsible for ordering foods directly from
manufacturer or 3rd party; clinic does not stock/order foods. Allowance is provided by
Children’s Special Services for speciality foods. (up to $180/month for ages 1-12 years
and up to $250/month for ages 12-18 years) No allowance for adults (18+ years of age)

 

Quebec :

Formula and variety of speciality foods are covered for anyone with valid Provincial
Health Care; shipping is covered for those not able to pick up from CLSC clinics, located
throughout Quebec, orders are processed at time of patient request to National Foods.
A $1500 annual allowance to order Cambrooke Foods. Product is delivered to CLSCs and
patients are required to pick up same day.

 

Ontario:

Formula is covered for anyone with valid Provincial Health Care. Many low protein
products are covered (as approved by the Special Advisory Committee), and available
through the Speciality Food Shop, http://www.specialtyfoodshop.com. Speciality Food shop is
also available to non-Ontario patients with a metabolic disorder. Shipping is free within
Ontario – Out-of-Province & express shipping charges apply.

 

New Brunswick :

Formula and variety of speciality foods are covered for anyone with valid Provincial 

Health Care, shipping is covered. Speciality food coverage is limited to staple items only
(bread mixes, flour, pastas) and shipping is covered.

 

Nova Scotia:

Formula is covered for anyone with valid Provincial Health Care, local patients are
required to pick up and for out of area patients, shipping is covered. Staple items are
available (pasta, baking mixes, cracker toasts, rusks) Patients can order other products
from National Distribution through clinic, but are responsible for charges.

 

Newfoundland
and Labrador:

Formula is covered for anyone with valid Provincial Health Care up to age 18 years,
shipping is covered. Only 2 formulas have been approved for coverage (Phenylfree &
Phenylade). Staple items (pasta, bread mixes, pizza shells, Ener-G cheese) are available
to patients up to 18 years of age and shipping is covered.

 

Prince Edward
Island:

There are no PKU clinics in province, but patients are seen by regular dieticians and
family doctors; clinic visits in Nova Scotia. Formula is covered for anyone with valid
Provincial Health Care up to age 18 years. There is no specialty food coverage, patients
are able to order speciality foods from Nova Scotia clinic but are responsible for all
charges.

 

As you can see we had alot to do to obtain universal standards in Canada. It is my dream to see coverage for all treatments across Canada. So we are fighting. One province at a time. 

 

 

 

2
CanPKU, News

PKU Advocacy Training Seminar

Posted on by Amanda Horner

For the past 2 days I have had the honour of attending an invite only, CanPKU advocacy seminar.

I am so very fortune for this opportunity and I have learnt so much. The seminar has been so informative and I have really learnt a lot. I really feel like I have taken away new knowledge and tools I can use to apply in our mission. We are so lucky to have had these professional consultants and experts to dedicate their time to us and to train us in media and government relations.

I have walked away from the seminar today feeling inspired and empowered.  For the first time in a very long time I am hopeful and excited for PKU. With the changes in the government and with our new health minister Terry Lake and deputy minister Steve Brown. I have hope and I am excited to work with this advocacy team. I really believe and feel this is the start to the end and we WILL make this happen.

I am currently in the truck right now on our way home to Kamloops , reflecting on the past few days and all that I have learnt. Taking it in an absorbing it. I had planned to take time, to plan out my blog post and then publish it when I got home. However, I have so much information swirling around in my brain that I cannot relax or focus on anything else. So I have pulled out my lap top, pillows and blanket and set up myself off line to write this down.

We had 3 Professional consulting teams at the event

Cohn and Wolf- Who work with media relations. We had work shops and roll playing on how to prepare for interviews, what to expect, What type of questions we may be asked and how to answer.  They taught us how to focus on 3 key messages and how best to get them across to the interviewer. Also what to say and what not to say.

Global Public affairs – They educated us on the Government, how it works,  what the rolls of the ministers are and the differences between politicians and beurocratics. They taught us about government relations and how to advocate in government efficiently.

Also we had the pleasure and expertise of Ryan from Advocacy solutions –  Who  educated us on being strong and efficient advocates, How to get our message out and how to speak or talk , to articulate and what language to use. Ryan worked with us on our personal stories and developing our messages.  Ryan even gave us homework!

Then of course we had Nicole Pallone, Vice president of CanPKU and John Adams President of CanPKU and our advocates. Including myself,  there was 3 PKU patients  ( 2 adults and 1 teenager) , Nicoles mother in law, 2 fathers, and 3 mothers

Our team has really grown since we started advocating 3 years ago.  Over the weekend we discussed our campaign in depth, what we are really asking for, the brain protection strategy plan in depth.  We exchanged information, experiences and debated issues, and topics on how to be best consistent and united in our cause.

I  learnt a lot of new information in the past few days that its a little overwhelming. I learnt new   facts regarding  treatments and new developments in PKU , as well as more details about our campaign.

This was our first sit down as a team and first face to face. We have had plenty of conference calls but all sitting down together like this around the conference table was amazing and valuable experience.

Since beginning this journey CanPKU has met with our government over 40 times. Only to have been told NO, to be ignored and to be disappointed.

BC really is the worst place to have PKU and our mission is to bring BC from worst to first!  Recently Ontario has approved KUVAN and is funding it,  they even have un restricted access to the medically necessary low protein  foods. It is not capped off or dependant on income.  It is unrestricted!!!

Saskatchewan is also close to signing a deal to approve KUVAN .  Joining many other countries around the world such as : France , Italy, Greece, and the Netherlands.  Just to name a few.

BC was offered the same price for these treatments at the “table” with Ontario and Saskatchewan,  and is the only province to walk away with a definite NO! Even with the same evidence, facts and education as the other provinces. Ontario and Saskatchewan had the same information and they made the completely different and right decision. It irks me that BC cannot do the same!

When Nicole and John have gone to parliament in Victoria to meet with legislation and discuss coverage of our medical foods and KUVAN they have been dismissed many times from MLAs and ministers who say that is not their legislation. Well in fact, we learnt that there is no one in the BC government who has legislation regarding medical foods.

The government has even gone as far to release statements in the media with wrong information and facts regarding KUVAN the cost and efficiency in the media. Stating is not government responsibility to cover food and that KUVAN is not proven to be efficient and too costly. KUVAN has been proven to be efficient in managing PKU, not only has it been approved by Health Canada but it is also being used and prescribed by doctors. In fact Doctors have spoken up in favour of KUVAN.

When it comes to our medical foods, the BC government has many different positions but they do not understand the fundamental differences between these medically necessary foods and “ foods” they hear the word food and automatically say no!

The Difference is these medically necessary foods are not regulated by the Canadian food inspection agency, who governs the foods you see in the grocery store. Our medical foods are regulated by Health Canada and are kept out of grocery stores because they are potentially dangerous to “normal” people.  We cannot just go out and buy these foods. They have to be ordered and imported into our distribution centers and then shipped to us.

What the government has not grasped is that regular food, and PHE is a neuro toxin to us. IT is poison!

This is the sole reasoning for our campaign and our efforts from getting BC from worst to first in PKU care. It is also the reasoning for our seminar.

Our Seminar began yesterday afternoon, with going around the table and sharing our advocacy efforts with the team, what we have accomplished, where stand currently and how we feel about our progress.  Many of us worked hard during the election to engage our MLAs and the media. We fought hard to build these relationships and essentially get on the MLA’s radar.

As I stated in an earlier blog post I was finally able to connect with Terry Lake . I had a wonderful meeting with him and now he is our Health minister!

Many of our other advocates have established relations with their MLAS and many of them have now become cabinet ministers. I believe this will certainly have a positive effect on our efforts in the coming months as we reconnect with them and as they come into their new rolls in parliament.

I found it very helpful to review the government and learn about the rolls. I am and have never been understanding of how the government works and how they do the things that they do.

I learnt about the political parties , the politicians and then the beaurocrats.

The political make up the Ministers. They are governed by the Crown. They are made up of political staffers and are elected.  Their sole purpose is to serve the government. They have transitory positions. So example, Terry Lake use to be the environmental Minister. He is now the Health Minister.  He was appointed by Premier Christy Clark.

The Beurocratics are the deputy’s, they are not elected.  They are appointed by the ministries and the government. Beaurocrats are a hireococy and their careers are as civil servants whose sole purpose is to serve the people or the public.

The Beuoroctaric positions are permit and are not transitory. They are not motivated by government but the minster will try to impose his views.

When Ministers are appointed to a new department, they usually no nothing about that sector and this is by design. The Beuocrats educate and brief them on the sector. Then the Ministers filter the information and use it to make decisions.

I find this all very interesting and fascinating.  I still have much to learn and rap my head around this but it’s a very exciting time , having a new health minister and a new deputy health minister since our last one was very direct  and non-supportive of our mission.

It is as if the stars are aligning and things are coming together. It’s a very exciting and hopeful time in the community.

This is the time to make change.  A mandate is the time in which a party is in power.  We just had our election in May and now when the parliament comes into session, we may have a short spring election if the bi election for Christy Clark in westside Kelowna wraps up in time, otherwise we will defiantly have a fall session.  Once the session begins the first and second year of the mandate is very important and where the changes will be made.  This is the time where the government is the most powerful.

After the first and second year, the power tends to wane down and the power shifts more to the beurocrats.  The ministers are beginning to focus on the next election and not wanting to “rock the boat “ as it were.

It was very interesting and mostly new information to me.  Understanding the process will really help me utilize my knowledge and my skill set to be more efficient in communicating and advocating for PKU.  But with knowledge comes responsibility .

So to understand this responsibility, we also learnt about the “curse of knowledge” and how that can affect our message.  The Curse of Knowledge I am defiantly at fault for. It can be broken down into 2 parts.

1 : the reflex need to explain the whole issue. I do this a lot.  I feel so passionately and that the whole issue is important and want to give as much information as I can, I want to educate and its hard for me to think that if someone has all the information then why would they not want to help us? But sometimes by giving to much information and spending to much time on the whole issue can take away from your message and you can lose the attention or focus of whom you are speaking too.

Secondly, the curse of knowledge can be when one does recognize if the person you are advocating for  knows anything about the subject you are talking about.  Example using a lot of wording  such as  “scientific or “nursing” language in your message.  We learnt how to focus our message, make it personal, use emotion and keep it short.

Ryan spent time educating to us  what true advocating is and how to be efficient.

Simply put, Advocacy means, “ Telling your story to someone through various means in the express interest of telling them to do or not do something”

Advocacy is a process and it takes time.  When advocating to be efficient and to get your message across you need to ground it into something tangible , make it personal and use emotion.

To focus on our One ask! Not a list of what we want.  That less is more.

Our homework last night was to write our personal story. To use emotion and to have 3 key messages. What is the problem? What is the impact of the problem and what the consequences are if not solved vs. solved.

To summarize what has happened to us and how it relates to the issue.  Our perspective based on our experience and how the government’s inaction or policy has impacted your life.  Your personal story must include your name, age, occupation, where you are from, challenges faces, why you believe they should help and how you personally feel.

The challenge with this homework was to keep this hole personal story under 1 minute!!  Well!! I have so much trouble with that. There is soooo much I want to say and to get across.

I changed my story so much last night and went over it and over it.  I am still not satisfied with it but I have decided to share my version with you.

This is my personal story I wrote for the seminar:

“Hi, My name is Amanda. I live in Kamloops BC. I am turning 27 in a few weeks. I work  as a pratical nurse. I have classical PKU. As an adult and a women with PKU I face many challenges, but to me personally my biggest challenge is maternal PKU. MPKU means that whatever the blood phe levels in my body are , they are double in my uterus and are potentially toxic in my uterus. Which can cause dangerous side effects to my future child. Such as deformities, and mental retardation.

The only way for me to have a successful and healthy pregnancy is to have an even more restricted diet , and even lower phe levels. Currently I am unable to do this because of the limited acess I have to the necessary medical treatments. There is nothing I want more in this world than to me a mother . The idea that they may never happen for me is both devastating and terrifying.

I believe the BC Government needs to commit to improving the care of PKU by investing 2.8 million dollars , a 0.016 % of the health care budget to bring BC up to the rest of Canada’s standards. We need this commitment because, Our brains, our bodies and our dreams are worth protecting. “

I presented this in just a few seconds over 60 seconds. That’s pretty good for me. I have real difficulty condensing my message and what I want to get across.

After this seminar I feel more confident on articulating my story and being efficient at communicating key messages.

The work shops and the roll playing really helped me . I have taken a lot away from this event and so far all I have told you about is only from our first day!

The organizers of this seminar really need to be recognized for their incredible job putting this together for us. Not only for our time but for the efficiency and time utilized, the information and the education but also the services. You see the event was catered. We were in a meeting room at the Raddison hotel and we had so much ground to cover, it was broken down into 2 days.

I actually had worked over night Saturday night and left for Vancouver as soon as I got home from work. We arrived in Vancouver at 1 and the seminar started at 2 pm and went till 9 pm last night. We didn’t have to go anywhere,  it was very convenient having the meeting room at the hotel but as well our meals where catered to us in the seminar , including PKU meals. I had so many new foods this weekend! I made sure to try everything to see if I liked it and if it would be something I may try to incorporate in my life. I was so amazed and impressed with the effort.  Last night for dinner I had pizza by cambrooke, and then the day today started off at 830 with breakfast and diving right into the discussion and presenting our home work. I was so surpassed when I took my seat and the waitress brought my my PKU labeled meal. When I removed the cover I was so taken back to see LOW PROTEIN EGGS!!  2 cambrugers, a onion bagel,  some fried potatoes and fruit! I have never in my life had EGGS! Even low protein eggs! This was a total first for me, They tasted kind of like thin pancakes or crepes. They where very good and I will defiantly try them together . I think when I order them I will add veggies and try to make my first ever omelette.

Then as a mid-morning snack I had pitas with salsa. I loved them!  Lunch was a boxed lunch so you had the option to take it with you if you had to leave. My lunch was a low protein sandwich made with cambrooke home-style bread, 2 butterscotch cookies, a cup of salad and apple juice. I have never had a lunch like this. Or found a bread I can eat un toasted that didn’t taste awful or crumble and hard as rock. I was very impressed. It was a great lunc and very filling. Something I could defiantly see myself taking to work with me on a night shift.

I have posted photos of my special meals from today on my facebook fan page.

Today’s second half of the seminar focused on media, our petition , interviews and discussion around our brain protection strategy plan we submitted to the government  before they dissolved . We discussed more in depth and touched on our key messages, our ask and our strategy for our campaign.

upon leaving today and walking away I have had time to absorb the information from the past few days and I know for me personally this was probably the most valuable session I have and I am so grateful for the support of the experts .

I appreciate them putting this together and am very impressed with how efficient and well done it was.

I really do feel excited. Like I said when I started this blog post, I feel very empowered and supported by the consultants and by CanPKU. I am confident we are a strong force and will not be taking NO as an answer. We will Bring BC from worst to first in PKU care.

But we cannot do it alone; we need and always welcome more advocates.  If I have learnt anything at all it is that you can really make a difference. No voice is to small. I never thought I could make change or have any effect on anyone. I didn’t think anyone would listen to what I had to say. I do feel like what I say and the things that I do like my blog and my fan page are important but I just didn’t grasp that someone else would listen to it or take away from it. I have learnt with working as an advocate for PKU how valuable my voice is and how valuable all voices are.  So do not think that you wont make a difference. Be the change you want to be and stand up! Alone we are rare, together we strong.  PKU Strong!

If anyone takes away from this post and is inspired or would like to learn more about advocating or wants to get involved in our campaign please do not hesitate and please contact me. I will support you and help any way that I can. Even if it means just putting you in touch with others who can help you get started.

The more voices they stand with us the better.

I really hope you will consider getting involved, but if you do not want to take such an active roll as I have , there are other ways you can help. Like signing our petition or using the email tools on the CanPKU website to send a letter to the premier and the health minister about PKU.  You can also support us by making a donation online to canPKU , Buying merchandise from the site or by attending an event!

Be sure to stay tuned in to my blog for more updates and our progress over the next few months !

Thank you to anyone who has read this post in its entirely. I know its probably one of my longest posts as it has taken me almost the whole drive home to write. Also now approaching 3400 words!!

So, until next time,

Amanda!

 

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Weight loss

The Elephant In The Room

Posted on by Amanda Horner

So no matter what age you are, for most women , the elephant in the room always seems to be our weight.  So having PKU should not not make it any different right? Well someday’s I just don’t think so. Like today. Its so tough.  The Frustration can get so overwhelming.

I have always struggled with my weight, and it always seems to be connected to my levels too. Normally When I have bad levels, I have my lower weights on the scale.

I was a very tiny baby and kid.. Then I started to get pretty chunky from age 9 or 10 , then went small again untill 13, and then I got heavy again until I was 17/ 18. Then I really dropped down. I was way to thin at 17, 18 and 19. Accused of being anorexic and unhealthy. I was certainly unhealthy, and suffering from many high level symptoms.

My self esteem and confidence has always been so low and I have a very poor body image. I am very unhappy with how I look. I feel frumpy , ugly and flabby!

It is so hard to manage the balance between low levels and low weight. I can never seem to find the right balance. The Low protein foods are high in carbs and sugar but low in protein. They fill me up and make me feel satisfied ,  I cannot eat enough fruit and veggies to feel full. I always feel hungry unless I have my low protein foods. Plus Im a picky eater and I get sick of fruit and veggies. Though over the last year I have come along way. I use to eat alot of fruit and veggies and I loved them , But I just got so sick of them every single day. With no variety . So I stopped eating them as much, and its taken my years to force myself to start increasing them in my diet again.

I love my protein food and I really get stuck in these phases where I just want one thing.  I always cook it the same way too. Then when I get sick of it I start craving something else. Right now I am on a Rigatini pasta salad kick, every night for dinner!

When my levels are low, I put on weight from the low pro foods, and when I start loosing weight I start raising my levels. So I never stick to a work out routine long enough.

Last month I lost 10 lbs and that pretty much was a result of being active for 3 months prior. Then my levels spiked so I took a break from physical activity to focus on my levels and increasing my low protein foods again. Now I have gained back ALL the weight I lost . Just as I started feeling better about myself and have my clothes start fitting nicer. Now I feel huge again and heavy. Not to mention the discouragement I feel.  I love the summer, I feel like I come alive in the summer and there is so much I want to do , but I hold myself back because I am so uncomfortable. Hot and sweaty and nothing fits comfortably or feels cool enough.  I love the sun and I want to be out in it any chance I get. I love the heat. but I hate my summer wardrobe.  Every winter I get rid of all my summer clothes, hoping it will push me to loose weight by summer so I can get nice clothes.  and every year its always the same.  I find its easier to be eat healthier in the summer though.  I think the heat makes it easier to eat lighter and less starchy meals , maybe because its so hot to have big meals. I do like warm breakfasts and dinners though.  In the winter I am always so cold , so I want warmer , more filling meals. Summer is much easier for eating fruits and veggies. Specially for breakfast and lunch. I tend to eat more salads in the summer to. Salads to me though are a lunch food. I just cant make myself only eat a salad for dinner.  I am trying hard to change these habits I have developed , to develop a healthier life style, but I cant seem to keep the weight off. It takes months to get it off, and then weeks to put it back on!

When I start to change the way I eat, incorporate more variety and more fruits and veggies, control my portions, focus on natural and organic foods, and spreading out my meals That’s when I begin to loose control of my levels. Maybe because I am hungrier? and I try harder not to rely on low proten foods and tend to pick other snacks lower in calories but higher in protein.

Its a constant Merry GO round! Just when I think I am beginning to figure it out something throws me off .  Then throw in working the night line. Sometimes I just feel like the odds are stacked against me. Every year I promise myslef that this will be my year to transform my body and I can picture in my head what I want to look like and how rewarding and amazing it will feel like. I want to be healthy and in shape more than I want to be skinny. I want to be more active and try new things, I dont want to miss out on some activities because I hold myself back from my lack in self esteem.

I have been told that it is very common for PKU women to be heavier in there 20s. The stero type for PKU girls , is blonde hair blue eyes and thin!  Then as young adults PKU Girls start to gain weight and fill out or, “apple shape”  However Like I said that is a stero type. and though I am heavier now in my 20s then I was as a teen, This is not the case for everyone.

A lot of people I meet , When I explain to them about my diet they say things like ” you must be so healthy, ” that’s a pretty great diet”, and then they start to say , “you should be so thin”, But then they stop themselves. They think, because of the amount of things we are “allergic “it should be easy to loose weight or keep it off. Then I tell them my low protein foods may be low in protein but not in calories.  The medical foods we rely on for our brains are not ideal nutritionally.

This became such a problem for me in high school that I just eventually stopped eating.  A lot of that was because it caused me alot of stomach pain when I ate and I still do suffer from Irritable bowel syndrome and gasto- intestinal symptoms. But being honest with myslef, thats how it started, then I dropped a ton of weight and began getting attention and noticed by boys and it went to my head. I loved the attention and getting noticed, hit on or whistled at. It was such a confidence  boost to have heads turn and being checked out. That never happens now. I should be ok with that since I have such an amazing man who loves me for who I am , and makes me feel so special . He does make me feel beautiful but every now and then its nice to be appreciated buy friends and others who dont “have” to tell you your beautiful.

Cole is at the point now where when I start to complain about how I look , instead of telling me not worry and that I am pretty, he tells me to do something about it. That I am not active enough and never follow through or stick to a routine. Sometimes its kinda annoying.But he has a point, he cant make me happy, I have to make myself happy.

Its hard work , its not easy and it will never be easy. I just have to find that balance.  So that’s again what I am doing, taking it one day at a time. tracking my food again and doing my blood levels and now I have to start working on my activity again. Get back to yoga and the gym! Also I hope to get my pool set up this week, then I can swim whenever I want!

One day, I really really hope I can climb this mountain and have the body I have always dreamed about, to look in the mirror and be proud of accomplishing my ultimate dream, and feeling the reward of loving my body.

 

 

 

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