This year I am focusing on growing and eating raw and oragnic. Growing my own vegtables, fruit and learning to can and preserve. These are from photos of my first day outside working. Today I planted alll our flower beds and begun pruning the fruit trees. Next week I begin weeding and rotertillering the veggie garden! The rubarb is doing lovely , my herbs have grown back in and all my tulips are blooming!
this is just the beginning!
Well Today I finally had an eventful day! I got out in the garden and planted all my flowers, did some yard work, through a loaf of bread in my bread machine and then when I came inside all covered in dirt I decided I had a craving for pizza. I have not made a low protein pizza in ages! So I jumped in my car and went and got some groceries and bought a pizza for cole too!
I came home and baked a wheatstarch pizza from scratch and topped it with onions, garlic, tomatoes, red peppers, mushrooms and Dayia Peppper jack Cheese! IT was so delcious!
So now cole and I are sitting here eating pizza together and watching the evening news. I feel so much better than I did this morning and happy to have some low pro baking done. I am looking forward to taking pizza to work tomorrow. Its one of my favorite foods. I got so worried about weight loss and calories though that I didnt want to eat that much low pro food and I havent had time for baking.
It was a beautiful day , high of 25 so the sun and the heat inspired me. So did my work on the garden. I planted all my flowers , and sun flowers , cherry tomatoes and onions. My tulips are blooming and I had a small bust of energy.
I will be tackling my vegtable garden on my next days off. I am excited to be growing my own food this summer. I am focusing on being more green and organic. I look forward to this summer being able to eat my own foods from my garden.
Because Cole’s mom grows such a big garden every year we eat all organic all summer long and she loads us up when we go over , we are focusing on growing what we use on a daily basis. Lettuce, and vegtables for salad. Our herbs are already coming up and the Rubarb is taking over the back of the garden. Looks like the grapes and raspberries and strawberries are coming in to!
Our Pear tree is blossoming to!I cant wait to have fresh pears and do some canning. We may have a peach tree growing, and we are going to buy a lemon, lime and apple.
I want to start making my own applesauce and apple butter!
So many plans and getting so excited with the weather changing. I find it so much easier to stay on track when I can grow and eat organic and in the summer , with more variety of fruits and vegetables. eating fresh and raw. I also look forward to growing my own green smoothie ingredients!
oh and because its so hot here , we can grow pineapples too!
Its going to be an awesome summer. My back yard its going to be my paradise. Helps that we have a large inground pool in the back yard too!
Here are some photos from my day today!:
Well I am starting to get back on track with my food records this week and i have figured out where i was so off track and how come I have had a permint headache that never seems to go away. I am way way way off target. I dont think its been for that long though cause I was eating alot of low protein food and pasta last week. This week however I ran out my bagels so i have been eating fruit loops for breakfast than potatoes and corn for dinner. So When I did my records last night I discovered that my past few days have been 722 mg phe, 703.5 mg phe, and even 752 mg phe but all my calories have been under 1600. Maybe cause my i haven’t been eating much but dinner and at dinner having both potatoes and corn at the same time. Plus fruit loops for breakfast. I am so very disappointed and shocked by how high those numbers are. I never even suspected. Thats double where I am suppose to be… so im making my effort over the weekend to bring them down. with the smaller portions and pasta at dinner im very hungry tonight. I did do a little baking today. I made some Maddys yellow cake and some maddys banana muffins. super easy put them on after dinner. All you do is add water and oil. They taste just great too! like real food lol. Really great texture too. I might buy a couple of the yellow cake and make a double layer birthday cake for myself this year. Tastes just as great as a real cake. I love birthday cakes its always been a special treat to get a slice of “real” birthday cake. I love the ones you get from thrifty foods with the cream in the middle. My siblings all like ice cream cake. I never tried any of those or any cake with any chocolate. I do also love angel food cake. .
Im not normally to big on sweets at least I dont eat any regularly. I do however go through phases and im kinda more a cookie fean. I love my low protein cookies by kingsmill. The orange and cinnamon are my favorites. I also love oreos, butterscotch cambrooke cookies, gluten free lemon wafers, and of course short bread! When I am getting cookies in the groceries store i always make sure its at most 1 gram per 2 cookies.
My favorite cookies are the aproten biscotti. I can eat a hole box. They just melt in your mouth!
I normally try to have a couple of boxes on hand of low protein cookies for snacking. Specially on night shifts, as well as for days where I have already most of my intake. They help as a filler.
I am going to plan to do a blood test on Monday I am working Sunday and Monday night so when I do a blood test on a night shift I do it after I wake up before dinner.
I hate the waiting in between though . I will mail my blood test on Tuesday so it wont get test at new born screening laboratory till next Wednesday and then I will have to wait another week for the results.
As an adult when your levels are consistent and in range you are only expected to do a blood phe level once a month and than an annual blood work in the hospital for amino acids and plasma’s . However I choose to do my blood tests at home once a week. It normally keeps me on track and accountable. I also like to be able to see my progress, patterns, and any changes. The range at my clinic is between 2 and 10 for adults. Unless its pre conception MPKU and then range is between 2 and 4 . I personally feel my best when my levels are between 6 and 8. My lowest where in February when I actually got them down to around 3. I don’t think have had them that low since 2006 and I never can keep them that low though. I really don’t eat a lot when they are that low. Up until December I hadn’t even recorded any food records for about 10 years. So needless to say I have come a long way and have begun adapting. Its starting to be come a life style change again. I still dont measure things though. I more just eye ball. I have a scale but ever since I was a kid we always used measuring cups. So I eye ball things in ” cup portions” However I am beginning to wonder about about how accurate I am. So I am working towards that as one of my goals.
So there we have it, a new plan to go forward. hope it goes well. We shall see come monday when I re evaluate.
so untill next time , Happy reading!
OK! getting back on track!
I feel off track for one week, but havent done a blood test since April 1st. Time to get working on it again. I emailed my click for tips about my schedule and formula. Taryn says I could be having higher levels cause i am actually looseing weight now. she said ” When you are losing weight your body is in catabolism, and thus sometimes we see higher phe levels”
Even thought i have been loosing very slowly and havent lost that much it could still give them a push.
Also I am suppose to break up my formula through out the day. I have been having 2 pkgs bettermilk at 5 am at work with breakfast and then not again untill dinner. I find it more filling that way. If I drink them one pkg at a time its not enough and not very filling at all.
However Taryn has asked that I break it up to 3-4 times a day. So today I tired having 2 at breakfast, 1 at lunch and 1 at dinner. I dont feel very full actually im still hungry and i had a high supper. mashed potatoes and kernal corn.
so tomorrows goal for me is since im breaking up my formula to break up my meals to. I have always had 3 meals a day. But tomorrow im going to take my dieticans suggestion and have my 3 meals but a morning snack and a afternoon snack. see if i can adjust to that. normally i eat every 4 hours when I am off.
We went grocery shopping and I got some special K bars, crackers and other things that are on the lower side of protein. my crackers i got are wheat thins and there 1 gram for 15 crackers. I also got some fresh fruit and i am going to do some baking tomorrow. I think i will start with muffins and a loaf of bread for my night shifts. i miss having my bagels cause all the cerals i can have are two sugary. The only cearels i can eat are froot loops , corn pops, captin crunch and sugary kid cerals. EVen though toast with jam and butter is about the same in calories, its proboly better for me than the ceral.
so now that i have a plan I can push back at it and try this again. heres to trying again and not giving up! I will get this sooner or later! you would think about 26 years I would have a handel on it but PKU is an on going roller coaster ride even as an adult!
it never stops and its always up and down. depending on the rest of your life an finances. Trouble is when my finances and life are off track it makes my levels off track and then having my levels off track makes me feel sick and harder to get my life on track. constant merry go round!
well thats all for now. Wish me luck!
I recently switched back to bettermilk. I really love the taste and the creaminess It did take me a few tries to get use to the new texture. It is so diffrent from any other formula. Its creamy, To me it does not taste chalky and does not have an bad after taste. It is not to thick and blends really well. Its hard to describe all the differances if you have not had it. I hear that is made to be more like real milk, I cannot say because I have never tried real milk.
I was on bettermilk before but then they made some changes to the formula that I was unable to tolerate well. The taste was to diffrent for me and hard on my stomach. So I went back to phenyl ade essentials since i knew it worked for me. I had herd that cambrooke had changed bettermilk back to the original but I was skeptical to try it again when phenyl ade was working out for me. So I waited alittle longer and am so glad I did go back! It really does make a diffrenace to my weight loss and to my digestive system. My IBS is way more manageable.
Previously I had been flavouring my bettermilk with Nestle Strawberry Quick. However that just added extra calories. Since I was trying to loose weight I was looking for alternative ways to flavour it as I do not like it plain and I did not like the flavoured bettermilk.
Cole suggested MIO. He had been using it in his water since moving to kamloops as he dos not like the taste of the water. I did not like MIO in my water . Cole researched MIO and found that though it is an artificial sweetner it is not made with aspartame It is flavored with surculose. It has no calories and no PHE or protein. It is secreted from the body in the urine and the body is unable to break it down.
There are a few diffrent lines of MIO , there is a few in America that are made with Caffine. They are not avalible here yet. So far in Canada we have the MIO Original and MIO sport. The MIO sport does have more salt then the originals. They taste so great in the bettermilk.
I have been alternating between 2 different flavors every day! I currently have , Berry Pomogrante, Strawberry, Fruit Punch, and Mango .
We just got The MIO sport berry blast ( blue) and the purple cant remember what flavor is.
We also just got 2 new originals in black cherry and lemonade.
They all taste great! I love them and they are working out so well for me :)
When I went to BC PKU DAY in February I told the Cambrooke rep what how I was drinking my formula! and told him about all the flavors that I have access to. clinic. Recently my clinic added my idea to the monthly newsletter. Alot of my PKU friends, family and followers did not know MIO did not have aspertame in it , So i am glad I was able to share this with them! I have already recieved messages and emails from others who have given it a try!
If you try MIO in your formula Id love to hear how you like it! It works well in bettermilk, un- flavored formulas like the new Phenylade and the un- flavored MTE packets!
Best of luck and enjoy!!!
Well Night 4 of 4 tonight. I know its been a while since my last post. I am sad to say I have fallen some what off track. I am so frustrated and exhausted. Why cant everything go right at once? there is always something!! You see, everything is pretty good right now , im finally looseing weight, I have a great job that I love , I am working lots of hours , I am more active and I am finding I really love sports and being active. I am enjoying activities much more than going to the gym. Like yoga, boot camp, badminton, Swimming, aqua fit, soft ball and I am looking to try some sort of dance and horse back riding. I am very happy and my pain is being manages pretty well.
all sounds good right? well no! My levels are spiking! my last 2 levels have been over 11. my last one being 11.8 , and this time I do not know why??? I dont feel like I have changed anything that I have been doing for the past 5 months. I am eating low protein food, I am eating more fruits and veggies. I am drinking plenty of water , and still drinking my green smoothies. The only things that are diffrent is my sleep schudel for work. My clinic is very understanding and is not worried. They said I am just adjusting to my shifts and new routines. But honestly I thought i had it under control. On my night shifts, I eat dinner with cole, than I bring snacks for 1am and 3 am if i am really hungry. I bring veggies, fruit or low pro . At 5 am I have my formula and a low pro bagel . Then I go home and go to sleep. I dont eat again till dinner when I wake up. I am drinking all of my bettermilk too. On my days off the first day I try to stay awake 24 hours now. I dont go to sleep when I get off. So like today when I go home I will try to stay awake all day so I can go to sleep tonight and be able to sleep during the night. I just had some crackers, and I wont eat again till 5 , today i brought Froot Loops as I just ran out of my cambrooke bagels. I will have a snack at 10 am after yoga. Low protein lunch at 1 pm and maybe a snack in the afternoon, normally fruit and a regular dinner with cole when he gets home.
So honestly other than the occasioal sushi I am not sure why my levels are high and it has left me feeling very discouraged. I even have not been recording since April 7th. I havent done any blood tests since April 1st. I cant let this go on. I have to get re motivated and step it up other wise this will become a pattern and will be harder to get back on track. I dont want to stay down to long. So I am trying to remain positive and get re motivated. I havent had a “BAD PKU” day or week in a while . Even when did though I didnt let it bring me down. However my levels have not spiked in to double digits previously. My clinic is not worried since range is 10 and so they are not to high. Cole is not worried either. But I was doing so good!!! I was getting them to my goal of under 6.
I guess I need to re evaluate my goals and my plan. Starting with to start recording again and do a blood test to see how far off track I have gotten. Since im running out of cambrooke foods I should plan to do some baking tomorrow. I will be to tired today.
Its just hard not to get discouraged sometimes is it not? what do you do when you are feeling knocked down? How do you get back on track? Have you ever experienced anything similar with your levels? have you noticed any patterns or life style changes that effect your levels? id love to hear from you!
I am extremely self conscious and these photos are completely non flattering so please do not judge . I really feel ugly but I wanted to share them with you in hopes to inspire you to keep working at it. My progress has been slow but its starting to show :)
March 1st : Weight 179.4 / Blood test result : 8.4 & Down 11 inches from January.
March 1st : 520mg phe / 1567 calories
March 2nd: 371.5 mg phe/ 1701 calories
March 3rd : 417.5 mg phe / 1752.5 calories
March 4th : 335.5 mg phe / 1928 calories
March 5th : 561.5 mg phe / 1861 calories
March 6th : 480.5 mg phe / 1352 calories
March 7th : 326 mg phe / 2101 calories
March 8th : Weight 178.8 / blood test result : 9.9 mm / dl
March 8th : 283.5 mg phe / 1292 calories
March 9th : 382.5 mg phe / 1652 calories
March 10th : 242 mg phe / 2130 calories
March 11th : 277.5 mg phe / 1307 calories
March 12th : 312 mg phe / 1359.7 calories
March 13th : 341 mg phe / 1594.7 calories
March 14th : 311.5 mg phe / 1370.2 calories
March 15th Weight : 178.0 / Blood test result : 7.3 mm/dl
March 15th : 337.5 mg phe / 1763.7 calories
March 16th: 383.5 mg phe / 1773.7 calories
March 17th : 371 mg phe / 1356 calories
March 18th : 454 mg phe / 1839 calories
March 19th : 379.5 mg phe / 1474 calories
March 20th : 458 mg phe / 1365.7 calories
March 21st : 413 mg phe / 1943.7 calories
March 22nd : 419 mg phe / 1603.7 calories
March 23rd : Weight 177.8 / Blood test result : 8.1 mm / dl
March 23rd : 388.5 mg phe / 1711.2 calories
March 24th : 341.5 mg phe / 1608.7 calories
March 25th : 251.5 mg phe / 1411.7 calories
March 26th : 670 mg phe / 2286 calories
March 27th ( forgot to fill in )
March 28th: 494.5 mg phe / 1746.2 calories
March 29th : Weight 177.4 / Blood test result : not yet back.
March 29th : 535 mg phe / 1958.7 calories
March 30th and 31st not filled in.
So as you can see from my tracking this month, my intake is all over the place and my levels are higher. I thought I was doing well during the week then I would get the results back and was horribly disappointed. Its my first full month in my night line and I know my body is going through an adjustment period. with my sleep and eating being seriously changed. I am hoping now that I have gone back and looked at what I was doing I will learn from it and take it into consideration when going forward. Although April is not starting out to well with all my days over 400. even reaching 500 again. But I feel like I am not eating that much food for it to be that high. Obviosuly on the very high days that where 500 and over you can tell I had sushi. So my goal for this month is no sushi. I know thats going to be my biggest challenge. I am already craving it and been dying to go all week. But I know I did break my rice addiction and my oatmeal addiction so I am going to have do to this too. For my body. and for me.
I have started my green smoothie challenge again for April as well, though its all good nutrients it is adding to my daily bottom line.
However I did my measurements and weigh on April first to see how my progress in march effected it and I was surprised to see march alone i lost 3.2 lbs and another 4.5 inches. Bringing my total to 5.4 lbs down and 13.5 inches lost since January 1st. That was a very cool validation. I am hoping my weight is finally on its way down and I am happy with the inches. I have had a few people comment but had not seen it for myself until I compared full length photos of myself from January to now.
These month end summery’s are really helping me to stay focused. They teach me alot to and help me set my goals for next month. By reflecting and looking back and reading through my note book I can see what I did and if I need to change or tweek something. I also write down little notes like If I ate out, if I had company over, where I was in my work rotation and times that I am eating. I have been tracking for 4 months now and I really want to stick with it. My goals for April are no sushi, more water, more activity ( as always) but also to keep calories under 1800 and keep my intake under 400.
Soft ball was canceled so right now my weeks are looking like, Tuesday morning yoga, Wednesday morning, circuit Thursday morning walk or hiking, with yoga in the afternoons. Fridays I go back to work so maybe a swim or walk in the day time before I nap. I work mostly friday, saturday, sunday and monday nights. With the occsional thursday this month too. Thursday nights before shift I plan to go to the gym.
well thats all for now! Thanks for reading!
Night shift 2 of 4. Taking advantage of some down time to do some work on my blogs. Going between 3 blogs can be difficult sometimes. One usually ends up getting more of my time then another. Tonight I am focusing on my PKU blog as its been a while since I have updated. Things are going ok. Gotten a few levels back. Still all under 8 but still to high to me. Formula is going well and diet for the most part. Adjusting to night shifts and been working on keeping active.
Not alot new, Other than edits to the blog. Tonight I changed the header photo, name and tag line. As well I added a few pages to the top menu. One on maternal PKU and one for a recipe section. I will try to add to that as I can. I have so far added the vegtable sushi recipe for now.
Along with these changes I have changed the side navigation , taken a few things away and added a few more. Adding a list of pages, social networking links to my twitter and facebook pages, as well as a list of past posts.
I hope you all continue to enjoy the blog and check back often!
Thats all for now. Happy Easter weekend and may you have a wonderful holiday with friends and family!
Hi everyone, Just wanted to let you all know that On June 1st, Canadian PKU and allied Disorders is hosting a national walkathon for PKU, I am co- organizing The ” Kamloops Walk for PKU” @ Westysde park from 1 pm till 5 pm.
I would really love to see you there. This cause is so important to me.
We have 2 goals for this walk.
1.To raise awareness for PKU and show the community that we are strong, connected and ready to fight for the access to all forms of treatment and care that we need.
2.To raise funds for CanPKU so that our organization can continue to host quality education events in all five regions of the country each year, support families living with PKU and allied disorders and advocate for the care and coverage needs in each province.
Your support would mean so much to me to have you there. I really hope you can join Cole and I . There will be a picnic lunch and a Pennies for PKU Penny drive. We are also looking for volunteers for Face Painting.
If you are interested in attending , please register at the link attached. Registration is free, its just we have numbers and in case we need to contact anyone!
Thank you so much from the bottom of my heart !
Amanda Cosburn
https://events.r20.constantcontact.com/register/eventReg?llr=7wfkgteab&oeidk=a07e71m20g0057e9ae2
I am PKU Strong 