I once described suffering from high levels like walking around in a fog.  Everything dim and pale. Sounds muffled, sights clouded. A fog that swirls around the outer edges of your minds eye. Slowing down time, coating life with a dense haze. Movements slowed, your body sluggish struggling to keep up. Watching the world pass you buy. That your standing there as it moves over your body, spreads across your face like walking through spider webs. Weightless yet suffocating. Standing in the cloud as it twists and turns around you, hiding you from sight.  Looking out and no one looking in. A beam of light slithers forward, blinding and bright , a ray catches through the thinnest veil, reflecting through the air, trying so hard to reach you. You hold out your hand desperately trying to cling to the light, to pull yourself closer, to pull it in, to brighten up the darkness.  Each Struggle in vain.  It washed through your hands, slips through your fingers. It disappears and you wait for the next beam to cross. Or to wait for someone to find save you, to flip the switch and bring back the sun. Cole did that for me once.

He was my light. How many times can one person save you? before you realize you have to save yourself?

When their shoulders and their strength is no longer enough to carry you. When you learn that they should not carry you. They are there to support you. TO help you, for you to lean on. Not to fall on.

Though my levels sit around 9 , I find the fog has been settling in again.  Its different this time.  I don’t feel as lost, I don’t feel alone. I have hope deep down inside. I feel him standing on the other side of the veil calling out to me. Reaching his hand out through the fog, Why don’t I reach out and take his hand? It is fuzzy…It makes me feel so tired, my reactions and my actions sluggish.  My body protesting any movement , its so heavy. I am so tired. Can’t I just lie down here?

The world does not wait, life does not pause. I need to speed up. I need to jump back on the merry go round. Shake off these cobwebs, breathe in deep, and stand tall. All the tools are around me, to pull myself up. To get myself out, I see them there, around me at my feet. My brain knows the steps, I know what I need to do , yet I cant seem to make myself , cant seem to push hard enough? I catch a glimpse of a mirror , but who is that looking back at me?

Her smile doesn’t reach all the way, her eyes don’t shine, her shoulders slump , her skin is pale, hair is flat. Where is that bounce in her step?

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My levels are not that high,  I am lost in my depression and I am growing increasingly worried about my mind.  Memories slipping through the cracks. My mom use to describe my mind like a sieve.  Maybe she was actually right? I feel my long term memory fading. Information missing, holes widening.  I try to remember, I try to focus.  What was that drug information? what is the definition? what are the side effects? what tests do I need for this diagnosis? What is this procedure? How do I do this again? What is a normal Bp? What are normal creatine levels? What is the drip rate for this normal saline?

Why cant I remember? I graduated college 4 years ago, There is so much I cant remember. I cant retain the information. I cant recall that answer?  What are the steps I need to do for this?

How do you long divide? what are my 9 times tables? Where is this country on a map? What is the capital city? How did world war 1 start? What are the provinces in order?  Why dont I know this? Why can’t I remember? what is wrong with me? What have I done? Did I do this? Did my non compliance to my diet as a teenager really effect me more then I ever could have known?

When I was 13 , My levels were so high, I was admitted to BC Children’s Hospital to be withdrawn from high levels. To be educated on the diet , to monitor and treat my side effects. They did so many tests. The one that has always stuck with me was the MRI. My mother came over by ferry to be with me, she sat on my bed when the doctor came in. He held the results in his hand, they sat there talking. Mom was crying. The doctor was talking about White matter. I didn’t understand.

what have I done?

Is this permanent?

I cant recall facts, I don’t remember what I learnt in school . Grade school and some of my college. I feel like it there. I just cant reach it. It is so frustrating!!

Cole and I will be sitting on the couch watching some program on TV, usually history, or discovery, something will come on , I know I should know it . I have to ask him. he explains. And asks why don’t you know that? didnt you learn it in school. What can I say? Probably? Yes? I dont remember? I didn’t pay attention? I was so sick I could not focus?

Little does he know how stupid I feel. How hard it is for me to ask , something so simple I should know. How mad I am at myself. That I blame myself, that It frightens me.

My biggest fear is as I grow old , it will worsen. That I am susceptible to alzheimer’s and dementia. That one day I will forget his face , That I wont know who he is, who my family is, who my friends are, and worse.. who I am?

I am 28 years old, and these are my thoughts, these are my deepest fears. My secret of secrets.  My biggest self confidence.  My lowest self esteem. My own mind scares me.

How can I hold off this fog? How can I help the light shine through? Can I prolong its creeping fingers?

Who can help? what questions can I ask? I want to be better, I want to get better. I want to be me , I want to be healthy and happy and enjoy life again!

I want to change! where do I start?

It has been a while since I have posted. So much has been happening and summer has gone by so very fast. Yesterday was the first full day of fall. Already!

I have had a very busy summer, even though a lot of it did not feel like summer activities.  We got our new pure-bread chocolate Labrador puppy Copper in June, the day after my birthday. July we travelled to Revelstoke to Arrow lake for camping to celebrate our 9 year anniversary. It was our first camping trip with Copper. August took us to Victoria for my sisters wedding. We spent a week visiting with friends and family.  August I also started a new job with interior health. I am excited and nervous all at the same time.  I have been working in private facilities since I began my career 4 years ago.  Also In August kamloops hosted a meet and greet with Shawn Johnson and Graham Wardle from the tV show heartland. Shawn Plays Grandpa Jack and Grahamn is Ty.  I had my photo taken with them and got their signatures. I also met a new friend waiting in line!  I took part in the ice bucket challange for ALS and we went spent the last week of August in clinton with family.

Our Garden did not end up doing well this year, either from not watering it regularly, i didnt have time to weed it as often as I wanted  , and then copper was using it as his toilet despite my vocal protests! But our fruit trees did great!!!  We got some wonderful juicy and large peaches and many many many pears.  We are all the peaches fresh or i added them to baking and food. The pears I mixed with apples and made apple/pear sauce.  I did get some good carrots, and peppers this year too.

September has been even busier. Almost all month I have been battling a chest infection and was on antibiotics but they didn’t seem to do much. I have also been  finishing off my orientation for my new job. it has been sporadic to get it in and finished with our really busy schedule.

Started off the month attempting to shave Figaro. He needed it badly, he was so matted and so hot and filled with dander.  It took me 8 hours though since I had the wrong shaver.

We puppy sat chris and Rae-Anne ‘s puppy steve, who is also coppers brother . We watched him over night and him and copper play so much! it was like having twins!

had a lovely visit with Claudia and Katie, We harvested the pears, went walking along the beach, had dinner and then the next day we went to breakfast and the farmers market. It was the longest I had left copper at home and We where gone about 4 hours.

I was finally able to do some low protein baking and canning. Harvesting what I could from our garden. I started to make my first few steps to regaining control of my levels and my pku diet. It has taken some hard knocks this summer and I have suffered from it.  I have had high levels most of the summer, not being eating a lot of low protein and eating out a lot. No baking, no tracking, no blood tests nothing. I have been having side effects and greatly suffering from depression. When I think back I think i began to fall off track in March. Since then it has been a downward spiral with my compliance and effort.  I have been battling with my depression and anxiety again with very high-tended side effects. My medications where increased and I have accepted and chosen to go to group therapy to work out some of my problems .  September was the month I chose was finally going to be my turning month and I was going to try to get back on track. It has not been as easy as it has in the past for me, and its been baby steps all month long. Focusing on habits, working on portion sizes, attempting to write everything down to see patterns and habits, and trying to increase my low protein foods again, as well as fruit and veggies. Trying to kick my bad rice and sushi habits.

We travelled back to Victoria again for another wedding. This time instead of being in the bridal party, I was the wedding photographer . I had my PKU Clinic visit on the way home from Victoria.

Last weekend I travelled to Vancouver with my one of my best friends Daphne to the Blake Shelton concert.  It was great!!! Opening acts where Dan and Shay, Neal McCoy and The band Perry. Then the big man himself whom I like to call god’s gift to country girls! Daphne bussed down from Edmonton on the Friday night. I picked her up Saturday morning at 7 am from the bus depot. Then we left kamloops at about 11 am, drove to Vancouver got there about 2, went for dinner at 5 , concert started at 7, over at 11, walked back to her brothers and left Vancouver at 12 am and got to kamloops at 4 am. I went to bed just before 5 am!  So Sunday was a rest day!

Monday Tuesday I did my evening orientation shifts and tonight I do my night orientation . Tomorrow will be a rest day and then I have a major challenge I am facing that will put my anxiety to the test. I am flying out Friday morning at 6 am to Calgary and then meeting up with Nicole and flying to Toronto for the CanPKU annual general meeting and advocacy training. I will be gone 2 nights 3 days ( and 4 plane rides) Back late Sunday night.  That will  give me 2 days before October starts and wow has it gone by fast.  I am really nervous. I have never flown before or travelled alone with out cole! If cole was coming I think I would be way more excited!! Right now I am worried and going through many “what if ” scenarios!

My goals for October include more frequent blood tests. I find doing them weekly keeps me accountable  . One of my bad habits is I will not do a blood test if I feel like my blood tests are high. I will tend to make an effort to drop them a bit before I do one. Right now I feel like I could be around 11 or 12. All the levels I did in August and for September have come back between 7 and 8.

My next goals are to bake more, focus more on eating different meals and mixing it up a bit. not eating the same thing everyday because it is so easy. I also need to cut back on mashed potatoes and rice.  I have no problem with my formula but I tend to drink it only 2 times a day. So I want to try spreading it out a bit more through out the day.  I also want to start making my own soups for fall and winter. I have some zucchini to use up and want to make some bread.  I am also hoping to increase my activity levels more, starting out small and not overwhelming myself. possibly walking Copper more regularly and maybe swimming too. My goal range for levels is 6 and under.  So we shall see how it goes.

That is what is new with me. I apologize for my lack of posting and activity on social media as of late. I am looking forward to things quieting down and getting back into a regular schedule again!

this is a difficult post to share with everyone today. However I have a confession to make.

I recently lost my way and fell off track with my management of my PKU.  I am sad to say things just spiraled out of control, one thing after another and I found myself stuck. I know how to pull my self out . I know what I need to do to keep myself healthy and how much better I feel when I am on track. I just could not seem to do it this time.

I thought when getting coverage of our low protein foods would make things easier for us adults. What excuses could we have now not to be on track?

Well turns out, its still the prepping, the planning, the measuring, the cooking, the baking, The managing every detail all the time. Sometimes it just gets so overwhelming and seems pointless. Even though I know in my head that it is not pointless. It protects my brain and keeps me healthy.  Some how I lost sight of that .

I started snacking on things here and there, my portions got to big, my choices where not healthy. I did not doing any low protein baking or cooking. I grabbed things from the cupboards that where easier and took last time. Like Rice, mashed potatoes. If I was hungry id grab cereal, chips, a few ciders here and there out at gatherings. Making excuses like its a special occasion. Its Ok I had a low PHE breakfast or I will eat something low for dinner. I began skipping lunch cause I was being to lazy to make anything.

The one thing I didn’t mess up on was my formula though. I drank it every day and my regular amount.

This went on for a few months. I think since May , One day just lead to the next, I had no motivation. I stopped being active or going out. Spending more time withdrawn and at home by myself.

Then I started noticing the effects it was having on me. The headaches started after a few weeks, from there I started having trouble with sleep. I wanted to sleep all day long and then all night. Would spend hours napping doing nothing. so tired and wanting to be in the dark in my room. My pain increased.  My concentration was effected, I feel more down, easily frustrated and sad.

Then I started noticing when talking to people at work I was loosing hole words. Trying to explain things, could see it in my head and knew what it was but could not think of the word I needed. That really freaked me out. I told no one what I was experiencing or what was going on.

My followers and my fans see me as an inspiration and think I do so well. I didnt want to let them down. I didnt want to admit I was struggeling and needed help.

I told Cole first, then one of my best friends Ashley. After saying it out loud I knew it was time to change. I set up my note book again and have been writing down what I eat but not tracking phe or calories at the moment. Trying to make different meals, cook and bake again. Add more vegetables and fruit. Increase my water.

I normally drink my formula twice a day, 2 packages of bettermilk and mio at breakfast and at dinner. Nothing at lunch or before bed.  After talking to my dietician I am trying to spread it out more. It means smaller amounts and volumes so not as satisfying to me . but more efficient to keep my going through the day.

I called my dietician after I talked to cole and Ashley. I confessed what was going on. I know no one can help me. That I have to do work on my own. I know how to do it. I have done it before. But It just seemed so overwhelming. Also cause I want so badly to loose weight and I am not. Knowing what I have to do and how much work it will be was overwhelming and discouraging me.  You see I am so happy with my physical image . I have no self esteem or confidence in myself. I do not feel pretty or happy with my body. I look in the mirror and  all i see is flaws. I see fat and flab and to much weight. I want to loose 50 lbs. I have set it in my mind if I can loose the weight everything will be better and I will be happier. I am not focus on being healthier and eating healthier. I am to focused on numbers and that if i loose weight my pain will be better, I will be happier , I will feel pretty and more confident and Cole would be happier too. I feel like I let him down physically and am an embarrassment. Though he constantly tells me that is not true!!! Hearing friends and family and Cole tell me I look good does nothing for me. I just feel they are being nice and thank them but never believe them.

So this is where I have been. Not right in my head and still having the headaches so wanting to sleep so much.

I started making a real effort again on June 18th so almost a week now. Cannot tell yet if there has been any improvements , still have the headaches but not sure about my word loss cause I have not really seen anyone or talked to anyone.  I feel a bit better some days. Making my portions smaller and spreading out meals during the day has been a real challenge. However the weather has been so nice it has been influencing my meal choices, making it easier to want to eat fruits and vegetables.  I am forcing myself to try new things , make different meals , even though my body is craving my old favourites and warm carb meals like rice and potatoes.  My clinic recommended a work shop called “craving change”  they think it would be helpful for me. They have it in Vancouver but they are looking to see if there is anything similar here.

I have not done a blood test to see how off track I actually got , I think physiologically it is hard for me to take a blood test when I know my levels are off because as a kid I got in so much trouble and yelled at our ended up admitted to the hospital. So I tend to do a blood test when I know they are stable. I am working on this and hope to do one soon!

So this is where I am . Its easier to share now as I am taking steps to pull myself back up. It is a roller coaster though and its important to not feel alone, ask for help and reach out . It is not easy to do alone. I am trying not to be ashamed.

Thank you for listening and your support.

Hoping the next few weeks continue to get better and then my goal is to start lightly back into physical activity.

When I was a child my momma signed me up with Medic Alert Canada with a life time membership. This is something they no longer do and my membership has been grandfathered. Which means it cannot be changed. I wore a sports bad medic alert bracelet as a child in elementary school. I do not remember what it said. I was also to young to understand the importance of a medic alert and how useful they can be.

When I started college to become a license practical nurse in 2009 I made the decision that it would probably be a good idea that I wear one again. I figured that with my history and medical issues that it would be my best interest. If anything every happened to me and I could not speak for myself or was badly hurt the first responders, paramedics and medical staff would know right away that I had PKU. Many people ask why me why? they say they are not going to feed me if I am passed out so why does it matter?

My answer to that is you never know what could happen to you or how others may respond. For myself I am so sensitive to my diet and eating that If I do not eat regularly I become very sick and can pass out. Like a diabetic almost. Diabetics who wear medic alerts people can read them if they are having symptoms and know what to avoid giving them and what not to due.

My bracelet also included my account code and a hot line number. Anyone can call that number and have my file pulled up with special instructions. I have spent a lot of time in the hospitals over the years, and many trips to the emergency. Though I have not been in a situation where I have needed it, It is comforting to know I have it if I need it. To me it is as important as if I was carrying an epi pen. It also included my allergy to codeine. ( a none PKU Allergy I discovered I had the hard way during a trip to emergency. )

I have not taken of my bracelet since I had first put it on. Almost 5 year. This past week it broke off my wrist and I lost it. This created a panic attack for me and I was desperate to have it. Luckily Cole found it under the couch and we where able to get it fixed. It looks like an o ring got caught on my wool blanket and broke off. The rings have become weak with wear.

My bracelet says :

PKU needs special diet

no Aspartame or Phenylalanine

Alleric : Codeine.

When I lost it and thought I was going to have to replace It I wanted to change the wording to be more detailed and include :

Phenylketonuria:

Allergic to phenylalanine and aspartame .

requires medical low protein diet and formula.

However I cannot afford to replace mine yet and am happy to have it back. Really made me think more about its importance, at-least to me . It is of course personal choice.

I am sorry that I have not posted in quite some time. Things have been hectic and I have been very busy with work, the biggest loser program and home things.  Also I have had massive amounts of pain, and a small knee injury last week that set me back in my program.

I am enjoying the biggest loser program. We are in week 5 today, and today is also weigh in and measurements day. I have currently only lost 1.1 lbs and have been working so hard. So I am feeling discouraged and frustrated. My mind is fighting my body wanting to push forward, not give up , work hard and get the results. My body is fighting back with new pain. My current pain management is no longer sufficient and I am having to try new things.

so this week I had an assessment done at a chiropractor. Which I was reluctant to do as I felt that in the past Chrio has made my back worse. However one of my personal trainers talked me into it. So I made an appt last Tuesday and  she informed me that I tested positive for the early signs of osteoarthritis with degeneration in my hips. She feels that a lot of my back pain is no longer muscular or from my disk, its from my hips pulling me down. I tested positive for osteoarthritis to almost all my joints, including my neck from c2 to c6 , my spine, my left shoulder, my lumbar back and left knee , ankle and foot. So next week off to x-rays to confirm.  The Chiropractor recommended glucosamine sulfate or collagen supplements but they contain PHE and I am not able to take these. Tylenol gives me no relief.  After leaving this appointment I called cole and talked it over with him, and my physio and personal friend in Victoria that has been following me for 6 years. We all agreed that it made sense. I must admit I never considered it, the thought never crossed my mind. I am not upset or disappointing because I can understand it and it makes sense. I knew that I was at risk with my PKU for osteoarthritis and osteoporosis I just  thought I was to young to get it now. I thought I still had many years. Unfortunately it is not irrivesable so all i can do is maintain and do my best. Working with the Chiro and my massage therapist for therapy and maybe look into some anti inflammatory foods and adding them to my diet.

I would really like to see my weight start to drop , I really want to be working out more, like everyday . I plan for it and attempt but then my pain makes me take rests days. 5 weeks in I was really hoping for some obvious changes. If I was doing this on my own, I probably would have given up by now. Luckily being apart of this program I have support from my personal trainers and they have been very supportive. Helping me work on my core, modifying exercises to get me though the pain, stretches for before and after and sometimes just let me rant.  I am determine to make week 6 a better week and start seeing some results. Fingers crossed! One day at a time right?

This week comings goal, get back into yoga and back into the pool! with 3-4 sessions with my personal trainer and cardio everyday!

Welcome to my newly updated blog. I have given it a mini make over. With a new theme and new title. I hope you enjoy it and find it easier to navigate.

Some statics from my blog in 2013 :

1358 Blog Followers by Email.

7905 views

107 comments

161 posts

29 blog followers

418 twitter followers

911 facebook followers

Best months for posts: June , November and December

Highest views per Country : USA followed by Canada and United Kingdom.

Most Viewed Pages:  Home page, Recipes, and Dental Hygiene and 4th place is the Big PKU annoucment.

2013 was a pretty impressive year for my blog and better than I ever could have dreamed. When I started this I really didnt think many people would be interested in what I had to say. I have really enjoyed sharing my PKU life and blogging about all things PKU. I look forward to connecting with you all in the new year. When I get back from Victoria I will be hitting the gym and working on my new years resolution of budgeting and saving money. I also want to crash my levels down again to under 5. I have made it my goal to go swimming more and spend more time outside. Speaking of outside its time for me to get ready and go for a walk through langford. I really hope to go to the beach today. I have really missed the ocean!

Wishing you all a fabulous year!

I would love some feedback on what you would like to see more of in 2014 on my blog or topics you would like to see me post about. I would really love for this blog to be more interactive as it has been great to see new followers join and leave comments!

Good morning everyone. How was your holiday season and new year?

We are starting off 2014 in Victoria. Visiting my family and friends. We arrived late on January 1st and are staying to early January 7th ( Tuesday morning) It is so good to be back. We have only been back to Victoria one other time since moving to kamloops. Our last visit here was February 2012. So almost a year. It has been hard being seperated from my family and friends and it feels good to be back. I have enjoyed visiting some of my old favorite places and walking through my home town. I defiently do not want to move back or to live hear but its great to visit.

I will admit whenever we travel I have a difficult time staying on track with my eating and my levels. specially since we have been eating out so much. I am not feeling the greatest and I can feel that my levels have creeped up. I did bring some low protein pasta, pizza pops and my low protein bread for breakfast with me and of course I am drinking all of my formula.  its hard to keep control when I want to visit my favorite restaurants that are not in kamloops. Like Mychosen Cafe and Moxies. I am dehydrated to. However my pain is better than expected and I have been having ok sleep.

Today I am meeting my sisters and my best friend for pottery and then later another friend for starbucks or sushi!

Cole has gone fishing so it gives me a chance to walk around on my own. I am taking alot of photos and will be sure to share some.

I hope everyone is doing well and I will be in touch soon