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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That's my PKU life

January 8th 2013

Posted on by Amanda Horner

Doing well today. Feeling a bit better every day. Had froot loops with almond silk and a banana for breakfast with my formula so yay no high calories or sweetness.  

Had my first physiotherapy appt at 1130. I am feeling positive about it. Defiantly felt like I was waking up those muscles that I have not used in a while and stretching them out. I actually hurt more than I thought because I haven’t really done anything . My back is stiff and compressed and my arm and neck are still torn and my knee still swells. some injuries are chronic and years old but then my right arm I injured recently as many of you may know. So today we focused on the range of motion in my arm and breathing exercises and kegals. Which I have never been able to engage  we will be doing lots of core work. i feel positive and know this is what i need. I have had hands on treatment for years so its time to take the next step and I still have my massages. 

Afterwords i ran down the hill to Amanda ,Was really nice to see her and i am very proud of her because though we have not seen each other pretty much for 3 weeks she still is eating low protein foods and drinking most of her formula. There are some things we both slacked off on , like she is not tracking or doing blood dots and she has been battling depression. Since I have Chronic major depression I can greatly relate to her , it can really knock you down. I made the decision for myself last June to go on anti depressants. It took years to make the decision and lots of suffering. I am not proud of it but i have accepted it. it was something I needed to do for myself. The depression and anxiety where taking over my life. The panic attacks where chains weighting me down and locking me in. I have noticed some amazing changes since being on this medications. I have tried several in the past but finally found one that works. But I know how easy it is to get trapped at home if you dont go out and how easy it is to shut off from to world so i took her out for a sushi date to get her out of the house. So now I will be having low protein pasta for dinner. 

Good thing my low protein order came today. it was at my door when I got home. I just finished stocking up my shelves and getting organized  Very awesome to see it all full again. Just in time for the snow too! we are expecting a blizzard.  We got 10 cm over night Sunday and tonight we are expecting 25 cm. It has already started too!! its coming down hard and my drive way is already completely  covered. Hope the roads are well maintained as I go back to work tomorrow night for over night shifts on the 9th, 10th and 12th. So I leave here at 10pm and leave work at 7am . Kamloops has not had this much snow in a very long time. Its been all over the news and all my friends live here keep telling me how unusual this is. Cole has never seen this much snow either! Glad we have everything we need. Well I guess we could use some more vegetables but we have the basics!! and a wood fire place :) 

so that is all for now, must go rest my arm, typing irritates me wrist and then spreads to me elbow and up. 

So best wishes and take care! 

 

xoxo Amanda 

 

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

January 7th 2013

Posted on by Amanda Horner

Well I feel like I have had some accomplishments today. I mailed in 2 blood dots over the weekend, and began tracking my food again. Made up my note book and am making an effort to just drink my p.ade and mte. 

Today however I woke up to fresh snow and it was really coming down. It was just to perfect for a pancake breakfast. so much for calorie counting ! But mmm gingerbread pancakes are my new sweet addiction that my sister in law introduced me to over christmas. 

I spent the morning working on PKU awareness on both my twitter account and my facebook fan page. I posted all the links I could find for other PKU blogs to help promote all my fellow bloggers, I posted information about food and the up and coming BC PKU DAY. I cant wait and am greatly looking forward to it. There is a great line up of guest speakers this year and i love going to these events for the social aspect. Meeting people face to face, sharing stories and getting to know the community and the support that is out there. 

I ordered some new low protein foods today finally. about 200 dollars worth. I ordered 2 boxes of aprotein biscotti cookies, 5 aprotein ditalini, 5 aproten riatini, 4 wheatstarche baking mixes, 1 dietary specailties mac & Cheese, 1 wel plan baking mix and a special order of CBF short grain rice.  the rice is not included in the over all price and has to be special ordered so will take 2 weeks. 

Just before lunch I was getting really hungry again and trying to figure out what to make when I got a special deliveray in the mail, well 2 actually, one from cambrooke foods and one from my friend Nicole pallone. Cambrooke foods sent me new samples of there products swirl and flavoured bettermilk. I was so excited to try the bettermilk but was deeply dissapointed. It was way to strong for me and just not a fan. I have never been able to handle that synsatized fake strawberry flavouring. Not sure if its to sweet or what it is. But it actually makes me sick. So now I am scared to try the orange.  Have not tried the swirl yet. it is carmel flavour and can be a pudding or a formula depending how much liquid you add. Kind of excited to give it a try. 

Nicole sent me a pkg of Spanish rice made by dietary specalities and that is what I had for lunch. It was really good. Next time I am going to add more vegtables to it though. 

so other than that not alot going on.Cole is home from work early do to the snow knocking out the power at his job site so hopefully we can go for a walk later. I am really tired again. still not sleeping well.  hopefully wil get up some motivation to do some baking tonight or tomorrow. 

 

well thats all for now, thanks for following! 

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Weight loss

January 6th

Posted on by Amanda Horner

Yesterday I was feeling very much under the weather, my cold decided to come back and linger a bit longer. I spent most of the day sleeping and resting.  After I woke up I reevaluated my diet and method of tracking. I decided againist doing weight watchers . I decided that it was just to much to do with pku as my formula takes up most of the allowed points. I thought about it and I talked about it with a great friend. I decided that I was going to stick to what I know and track my phe in my note book and with my pku bible the food list, as well as my calories. I have my goal range of 500 mg phe and 1800 calories and with the support of my dietitians, family, friends and amanda I should be able to do it. I just have to stick to it and keep consistent.  SO i made my plan, set up my note book and have it on the living room coffee table so i have to see it every time i sit down.  I think I did fairly well yesterday and increased my vegtables servings.  I also have been working on my water intake. I ended my day with a relaxing vanilla bubble bath to unwind and relax my muscles to help me sleep. 

Feeling a bit better today. However I had horrible night mares that lingered with me all day and left me super sensitive and emotional.  Got some air and went for a walk this morning. we walked together to and from the grocery store. in all took about 50 mins.  It was about minus 4 degrees out.  I started off the day with fruit loops and almond silk milk , my bananas where not ripe yet however so didnt get to put them in my cereal. Lunch I was still feeling unwell with a really bad headache and very chilled from the walk so I had hot tomatoe soup and crackers.  Dinner I had yams, scheswan beans, salad and applesauce. Today was the first full day of tracking and drinking 1 scoop p.ade and 1 scoop mte 3 times a day instead of 2 scoops p.ade 3 times a day. When I was drinking that amount of formula i was geting 314 calories each time but I was full!! tonight my calories are cut in half but i am starving!! i am trying soooo hard not to snack. I have had my food limit today and I just keep telling myself it is worth it and i will adjust to the diffrence it will just take a while. This is where my will power will come into play. 

So we are now unwinding watching a movie with a warm fire and I am having tea and cole is having a hot chocolate. Tomorrow Id like to get out and maybe go for a walk or go to the westsyde gym i am hoping it wont be as busy, but with it being the fist week of the new year i am expecting all the gyms to be packed. I am hoping because westysde is alot smaller that I might have better luck. 

I have not warn my sling today, it pulls to much on my neck and really hurts. I am also not taking anything any more for my neck. I think the stronger dose of mortin was contributing to my headaches.  Today I have been focusing on increasing my water intake and keeping hydrated. 

Tomorrow my goal is to do some sort of activity for 30 mins even if its just around the house on my wii fit or dvds, stretching, yoga or another walk. 

i hope to make daily goals and weekly goals. every day is a fresh start and a new beginning.  A chance to do what I had not done the day before. 

So that is all for tonight, my show once a pon a time is on! 

untill next time, 

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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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That's my PKU life

January 1st 2013

Posted on by Amanda Horner

Happy New Year everyone!! May 2013 bring you and yours, peace, love, happiness and good health! 

2012 was an amazing year for myself and other half cole, It brought many changes to our lives and was a year of growth and new oppetunities and new adventures. Some big life changing events.

Cole and I both had lazer eye surgery in april . That alone changed our lives . I went from being nearly blind and very poor vision to 20/20 in a month. Cole has 20/15 in 12 hours!!

Then  in the summer we picked  up our lives and re located to the interior . We moved from my home town where I was born and raised and were we met and started our lives together.  We now live in Kamloops Bc. Its about a 1.5 hour ferry ride and 4 hour drive or alittle more from victoria if you take the coquihalla high way. Cole was born and rasied in Clinton so it is alot closer to his family and friends. His brother and sister in law live a 15 min walk or 3 min drive away. And coles parents is about an hour and 45 min drive. 

I got a fabulous new job continuing my career as a License Practical Nurse in an assisted living factility and then picked up a second job in my neighborhood as a casual LPN in long term care. 

We bought our first home together in september and we renoed it together in october and moved in october 16th. 

In November my PKU Friend Amanda J and I began working together on a daily basis to gain control and compliance over our diet and lower our levels. I brought mine down to 2 and she brought hers down from 18 to 8. 

These are just a few of the highlights of 2012 , it was quiet and year for the first time that I can remember I sit here tonight on my graveyard shift facing 2013 not in debut, with no regrets, and happier with myself than I have been in a long time.  I am looking forward to the future with the love of my life,  cole and where our lives take us and what new adventures we par take in. 

As long as I remeber my motto, that every day is a new day, a fresh start and a chance to do better than I am confident 2013 will be just as much a sucess if not even better.  All I can hope for is to take one day at a time and make it count! 

again best wishes to you all and thank you for following my new PKU Blog. I look forward to getting to know you all in 2013 . 

 

xoox Amanda Cosburn

 

 

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