Category: Managing the diet

Levels, Managing the diet, Weight loss

February 8th 2013 : 12:50 AM

Posted on by Amanda Horner

January Overview :  Starting Weight : 181.6

January 4th : 252 mg phe / 1530 calories

January 5th : 456.5 mg phe  / 2299 calories ( 7.5 mm/dl Blood test result)

January 6th : 745.5 mg phe  / 1619 calories

January 7th : 239.5mg phe / 2836 calories

January 8th : 575 mg phe / 1701 calories

January 9th : 243.5 mg phe / 1895 calories

January 10th : 271.5 mg phe / 1284 calories

January 11th : 392 mg phe / 2066 calories

January 12th : 320 mg phe / 2847 calories ( Blood test Result : 5.6 mm/dl )

January 13th : 328 mg phe / 1726 calories

January 14th : 424.5 mg phe / 1231 calories

January 15th :  693 mg phe / 1735 calories

January 16th : 328 mg phe / 1887 calories

January 17th : 378 mg phe / 1669 calories

January 18th : 265 mg phe / 1612 calories

January 19th : 456.5 mg phe / 1766 calories

January 20th : 276.5 mg phe / 2010 calories ( blood test done – 6.6 mg/ dl results )

January 21st : 142mg phe /  1966.5 calories

January 22nd : 235 mg phe / 2062 calories

January 23rd : 462.5 mg phe / 1647 calories

January 24th : 322. 5 mg phe / 1599 Calories

January 25th : 292 mg phe / 2074 calories

January 26th : 245 mg phe / 2126 calories

January 27th : 437.5 mg phe / 1451 calories ( blood test done – 6.5 mg/dl results)

January 28th : forgot to fill in  :(

January 29th : 483 mg phe / 1694.5 calories

January 30th : 363.5 mg phe / 1475 calories

January 31st : Lunch out at white spot. They made me  a vegtable rice stir fry / sweet chill sauce

with out lunch my intake was 270 mg phe / 1244 calories.

Weight on February 1st : 180.2   Loss for January : 1.4 lbs

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Levels, Managing the diet

January 23rd 2013

Posted on by Amanda Horner

January 4th : 252 mg phe / 1530 calories

January 5th : 456.5 mg phe  / 2299 calories ( 7.5 mm/dl Blood test result)

January 6th : 745.5 mg phe  / 1619 calories

January 7th : 239.5mg phe / 2836 calories

January 8th : 575 mg phe / 1701 calories

January 9th : 243.5 mg phe / 1895 calories

January 10th : 271.5 mg phe / 1284 calories

January 11th : 392 mg phe / 2066 calories

January 12th : 320 mg phe / 2847 calories ( Blood test Result : 5.6 mm/dl )

January 13th : 328 mg phe / 1726 calories

January 14th : 424.5 mg phe / 1231 calories

January 15th :  693 mg phe / 1735 calories

January 16th : 328 mg phe / 1887 calories

January 17th : 378 mg phe / 1669 calories

January 18th : 265 mg phe / 1612 calories

January 19th : 456.5 mg phe / 1766 calories

January 20th : 276.5 mg phe / 2010 calories

January 21st : 142mg phe /  1966.5 calories ( Blood test done)

January 22nd : 235 mg phe / 2062 calories

January 23rd : 462.5 mg phe / 1647 calories

More to come !!

Feeling pretty good about my progress.

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Managing the diet, That's my PKU life

january 16th 2013

Posted on by Amanda Horner

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working an eveninh shift tonight. I never use to bring food to school or work and I have no idea how I ever survived. I have always packed my own food now no matter where I go. this is my system. pays to be organized. I got these great containers from walmart they clip together and stack. they also come with ice packs. the small 2 containers arey formula. phenylade orange cream essentials and my mte amino acid mix. o use to carry the cans with me but they take up a lot of room in my bag.  this system has been working really well for me. tonight for dinner was low protein mac and cheesr by dietary specalities and applesauce for a snack.  I’m doing pretty well right now with meals and portion sizes. thankg goodness since I’ve been in the gym every day this week. today I even did an hour in the gym and an hour in aqua fit. see that purple bottle. that’s my water bottle normally I barely get through one a day. tonight I’m on my third!!! making progress on my resolutions already! :) that’s all for now break over so back to work.  off at 11pm!!
have a good night everyone.
best wishes
xoxoo amanda

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Managing the diet

My Notebook!

Posted on by Amanda Horner

My note book is becoming such a hudge part of my day to day. I carry it with me in my purse and I take it to restraunts and to work , or where ever else I go. I track so much in it not just my food. 

I found my notebook at walmart. Its a 3 subject notebook, not your stereotypical note book, I always pick one with designs that appeal to me. I have divided each “subject” into a month. My current note book is December, January, February.  The first few pages of my note book are lists of my weekly levels, my weekly weights, gym or work physical activities , and monthly measurments. Then behind those first few photos are my food records. In my food records I track my meals, the amounts / portion sizes, Phenylalaine, and calories.  Each week I set up a week of my pages, dated and I make a coloums. I use my ruler and divide each page into 4 coloums and then each day I write what I have eaten. I dont always fill in my calculations daily , sometimes once a week , sometimes at work on night shifts and some times daily. I have not done my own calculations in many years. I have not filled them in and usually fax in a few days and my lovely dieticans analize them and send me back the results.  I am pretty proud that I am doing my own. Its been so helpful to see my progress on paper. I have tried apps and I have tried spread sheets but nothing works as good as my notebook.  I finally have the newest editon of the PKU food list by Virgina Schuette again. I have not have a food list binder since my teen years. I dont no how I lived with out it!  Now each day i can see my food patterns, my portions, how many servings of fruit and veggies, and what my calories and phe i am eating. When I send a blood level in now I can go back and review what I did and if i need to make changes . Having my notebook has certainly helped me return to a strict diet.  I have never been so much off diet as i have strayed. I have never eaten meat or dairy or seafood or anything really high protein other than rice ( thats a hole nother story.) I have just over the years eaten more of what I can have and stopped measuring , I tend to eye ball or just eat till I am full.  My protion sizes over the years have gotten bigger, I have a harder time feeling full when I dont eat low protein food. I have never had a stable supply of low protein foods so my compliance has fluctuated from when I have low protein food to when I dont. I am finally working out a system though . Thanks to my note book! 

Here are some of my photos of my notebook. Enjoy ! 

 

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Managing the diet, That's my PKU life

January 10th 2013

Posted on by Amanda Horner

You know those moments when you should be sleeping and you are so very much passed exhaustion but your brain just wont shut off? Thats my morning so far.  Worked a night shift last night and am also working one tonight. My body aches mostly my arm and shoulder, my eyes hurt and are heavy I would really love to be able to get comfortable but my mind just keeps going in circles.

You always think of the most random stuff when your brain wont shut of. For example, this morning I am thinking of disaster situations and how I would survive them with PKU.  Like what If we where on a plane and it crashed some where remote and we where stranded for a very long time. What would happen after I ran out of my formula if we even where lucky enough to crash with our luggage. What could I eat ? how would i manage not being able to contact my clinic for advise. How could I get buy and how long would it be before I started to feel it?

OR what if there was a natural disaster and we lost all power, where cut off from the world and I ran out of resources, formula and help from my clinic . Like if there really was an apocalypse and the world was all fire and ice , chaos and destruction.

Really makes one wonder and fear. I can understand why they are people who hoard supplies and shelters just in case.  Could you even do that with PKU? most of the low protein foods have a shorter shelf life, alot of them need to be pre  made or cooked. Formula is so expensive and covered by the government so it is give out diligently and only in 3 month supplies, and with items like these and so precious it would be hard to stock up when you have to use what you have when you have it.

What would you do if you got lost in a forest or stranded, how would you survive if you could not eat nuts, meat, animals,  or if you dont know the phe in bark , fruit and grass?

am I the only one who really spends time thinking about all these what if situations? are they really relevant and worth worrying about. I am sure for the short time in a temp situation , and in a situation where formula was not available nuts or other small sources of protein would be appropriate. Id rather eat something slightly higher  then to  die of starvation. But where do you draw the line? if you know something is going to make you so sick to the point you almost wish you would die rather than having to eat it?  How long can someone with PKU survive lost in the wild? would you give in and eat meat , animals or hunt? or fish? I personally know my body cannot handle it and how sick i feel when I eat something only slightly high scares me immensely to think about eating high protein. Let alone the worry of brain damage. But who knows how one would think in a life or death situation faced with hunger and starvation.

So you see my over tired and under rested mind is running away with wild scenarios. That make me consider living off the land as much as possible and learning basic survival skills. I dont even no how to start a fire. Let alone what leafs, plants and wild fruit are safe.

I am looking forward to growing alot of my own veggies this coming spring and summer and living a life less dependent on processed, canned, GMO, chemically grown and un nutritional foods. I am going more green and organic.  Last summer when we moved to kamloops we didnt have to by any vegtables because my mother in law has a garden over an acre in size and she grows just about everything . She has taught me to make soups can foods, preserve and freeze foods for winter and I am learning more about gardening.  I feel proud of this and am happy. I feel better about my carbon foot print and am learning to recycle and compost as well.

Other than my low protein foods formula and things like crackers, cereal , rice cakes, and condiments we eat pretty healthy and natural! Even coles meet comes from his parents farm. This year they had a steer and pigs. Next year they are adding chickens and turkeys, Cole has been fishing way more this year as well.

Well my eyes are getting more and more heavy and harder to keep open, writting down my thoughts that have been circulating is hopefully going to help me get some sleep. Think I may go for that bubble bath to relax even more.

Thanks for listening to my rambling today!

Best wishes,

xoox Amanda

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Levels, Managing the diet, That's my PKU life

January 4th 2013

Posted on by Amanda Horner

So on new years eve day before work Cole and I decided to go for a walk and we walked around for 2 hours in the snow and had a great time. When we got home I slipped and fell on ice in my driveway. My feet came out from under me so fast next thing i knew I was on my back  and landed on my shoulder. I herd a crack and instant pain. Cole reached for me but I told him not to touch me. eventually i was able to get up and I figured i could shake it off. I went to work that night and worked the grave yard and the pain just kept getting worse. Went to a massage in the morning and she said she thought my bones where bruised in my arm , shoulder and ribs. I made a physio appt for the next day because I did not want to wait in a clinic for hours. When I got to physio at 3 yesterday and the physio started to examine me shoulder I fainted. I have only ever fainted once when i was 13. I was unable to drive and had to have my sister in law come pick me up and I was so scared I decided to go to emergency.  The emergency room is a lot different then Victoria ,  in Victoria there is one triage and one big waiting room where everyone has to sit in no matter what they have. Here they have the check in counter triage and then they filter you into different waiting rooms and areas . When I got there there was a young family that came in after me. The young mom was a mess and her baby daughter was injured  Turns out the mom tripped over the dog and fell down the stairs with the baby and the baby fell 7 stairs and landed on her face. I let them go ahead of me before i learnt that.  After they had checked in I started to get really hot and dizzy and nauseated , i bent down on my knees in the line and the other people helped me to get up and sit in a chair and then I fainted again. They took me right in on a stretcher. I had ex-rays they suspected i cracked my shoulder blade or had a fracture. my hole numb was swollen and i was in so much pain. They gave me a shot of morphine but it did nothing for my pain. Cole got to the hospital at 8 pm. I was not aloud to eat or drink and I was getting really dehydrated. So they started me on a liter of saline. I kept fainting every time I got up or they tried to move my arm so i was on the stretcher. I had to have an EKG of my heart for the fainting and some blood drawn. My veins are very small and everyone always has a really tough time the tech did not believe me. She ended up having to use a pediatric butterfly and take it from my hand. She was considering trying to get blood from my feet thankfully she was able to get enough from my hand.  turns out no fracture or cracks. Doctor said I have a hematoma in my shoulder, a brachial tear in my arm muscles and the bone is bruised  I also pinched a nerve in my neck so my arm is in a sling now . I was not able to leave until I stopped fainting  I also have to follow up with a neurologist in 4 weeks. I am off work for 5 days and then I can go back to physio and massage.  we eventually left at 1230 and home around 1 am.  I left my car at physio when I went to hospital so today I had to go pick it up. Cole got up at 530 to go to work I knew he was to tired. I tried to sleep more but my head is pounding and I cant get comfortable any way I move or lay to long makes my arm swell or go numb. 

I got up around 830 and Cole came home around 10 am because he was to tried to work. He drove me to take my car . Even with my arm in a sling I was able to drive safely and took my doctors note into work, Then I got gas for my car and a stranger helped me fill up my windshield wiper fluid. after I got groceries and had to have them carried out the car but I got everything I needed to make dinner for Tracy and Kenny  First time I was getting to cook for coles mom. Cole was making the ham though. I made roasted potatoes and veggies in apple juice and spices. as well as a salad. before they came over thought I was restless and had a migraine so i started cleaning. I swept and washed all the floors and vacumned and loaded the dish washer. Then I laid down for an hour but my mind was racing. I think it was from the Tramadol I cannot sleep and get insomnia when I take it. I am also taking 800 mg of Motrin twice a day.   Tracy and kenny got here at 5 and we had dinner and then watched the remake of total recall . They just left and now I am catching up on my blog and some things on facebook. I have a really bad headache and it really hurts to type. I am surprised I am still awake I am so tried and almost fell asleep during the movie.  I defiantly over did it today. I did way to much and I am paying for it now. I dont want to take any more Tramadol  It use to help my back but I think its what is giving me my headache and making me restless. 

I have no appetite and did not eat anything all day, just my formula and my water. untill I dinner I had a bit but little appetite  I am really thirsty though. I  cannot seem to drink enough water. I think I am going to do a level tomorrow to see how being off track this last week.  I got paid today to so hopefully I can order some low pro food. I need pasta and wheatstarch. I am thinking also that I might try the dietary specialties lasagna. Tracy gave me a recipie I can use with the noodles and now i have my vegan cheese so it would be something new to try and I am kind of excited. Hopefully special products have some. 

well thats all for tonight, my wrist is hurting and my arm is getting very tight. Fingers crossed I can get some sleep tonight!! 

 

Good night all, 

xox Amanda 

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Low pro food / cooking, Managing the diet, That's my PKU life, Weight loss

January 3rd 2013

Posted on by Amanda Horner

Well I am working night shifts for the next little while. Night shifts are sure hard on the body. I knew when i became a nurse that I would have to work a crazy schedule and specially starting out casual and on call. I just thought id get use to it. Even almost 3 years later it still takes a toll on my body. I do not know many people with PKU who work in health care and the ones that I do know I have asked them for advice. I just cant seem to get a system in place. Night shifts really mess me up for a few days at a time. Normally i dont work to many in a row but a nurse recently quit at my facility and her line has not been filled yet. So I worked over night on the 27th of december, new years eve, yesterday, today, saturday, sunday and then the 8th and 9th. 

Normally I try to bring low protein snacks to have with me but I try so hard not eat. Does not work so well by 2 am I am so hungry. Eating anything on night shifts even if it is low protein effects my daily intake. I usually take things like low protein cookies, pizza pops, crackers, apple sauce or whatever is quick and easy. Right now I have a very limited supply of low protein food so I have been taking cereal and working really hard not to eat it till at least 5 am. I also take an extra formula. 

Its frusterating as I am trying to loose weight and on the days I work over night my intake and my calories are higher. Not to mention the next day after I wake up for my nap I have “gut rot” which is a really upset stomach , nausea and a pounding headache. Today I have not been able to get much sleep at all. I had a bad fall on new years eve day and I think I have bruised my ribs on my right side , and my right shoulder , arm , elbow and wrist right down into the bone so i can not get comfortable  I need to get some sleep today since I go back again tonight at 11pm. 

it is very hard to sleep during the day. so many sounds and even with my heavy curtins drawn it is still to bright. I have tried ear plugs and I am going to get an eye mask to try to help.  I wake up every 1 or 2 hours. The most I can sleep at a time is 4 hours. And i am a person who really loves my sleep. 

atleast tomorrow is pay day so I can order some more low protein food. I am going to stock up and get a bunch of pasta, rice and baking mixes. 

I have a physio appt at 3 pm , my first one since moving to kamloops. So that is another reason why I cant get to sleep, scared I will over sleep and miss it. 

I plan on having a bubble bath when I get home to make myself relax and then try to get some sleep again. 

My annual blood work came back yesterday and seems all is ok accept my triglcerides. They are to high. So I have to continue to take my salmon fish oil capsules. My level from December 8th was 10.0 and my level from December 13th was 6.6. They are higher than they where last month and I know it is because of the lack of baking and low protein food. I would like to get them back down to around 4 for January. 

I joined weight watchers for the month of january to give it a try and see if I can make it work with my PKU diet. I am hoping the meetings, support groups and education will motivate me and help me stay consistent. That is my biggest problem when it comes to weight loss. I cant stay on track , I usually push really hard for 3 months and then I get exhusted, or injured and stop working out or eating right. I am not active enough so that is my goal for this month to. I want to work out 3 days a week. And When I say work out I dont mean just in the gym any more. I want to get back in the pool, walking and yoga. So we shall see how it goes this time round, Wish me luck! 

Thats all for today. must get ready for physio. 

Take care and thanks for following!!

xoxo Amanda 

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