Lost recipe – Peanut butter no bake cookies – where are you recipe?

January 31, 2008 at 5:15 pm | In Life in General | 2 Comments

I am looking for a long lost recipe I got many years ago from one of my nutritionists.  I think it was in an old CF Recipe book, maybe not.  It was one of my favorite high calorie treats.  Just wondering if anyone else may have it and can reunite me with my favorite no-bake cookie!

The recipe contained massive amounts of peanut butter, oatmeal, sugar, vanilla… maybe another ingredient or two.  There was an optional chocolate variety, but I preferred it with out.  You would combine all the ingredients in a pot on the stove until it was a gooey mess.  Then drop it by spoonfuls on a piece of waxed paper, it would spread out by itself, and you’d let it cool for a couple of hours then you could devour the yummy “cookies”!

Recipe? Are you out there?  I miss you!

The future of the insulin pump

January 31, 2008 at 12:36 pm | In Challenges, Cystic Fibrosis Related Diabetes, diabetes, insulin pump | Leave a Comment

After reading Amy’s Open Letter to Steve Jobs, over at Diabetes Mine, regarding the lack of I have come up with items I would love to see integrated into the insulin pump. Maybe some day these things will come to fruition! Maybe they would call it the iPump? hehe

  • PDA one where I can store a carbohydrate count cheat sheet, calendar, maybe a few games to play while sitting in the exam room waiting for one of my half dozen doctors.
  • mp3 player
  • GPS
  • WiFi
  • Bluetooth
  • ooh! an integrated cell phone with a QERTY keyboard since I am a text messaging mad woman!
  • how about a swiss army knife?!

Any other suggestions??

Now how they would fit it in something as small as the pumps, PDAs or cellphones that are currently on the market now days, I am not sure.

Who dictates my healthcare?

January 24, 2008 at 8:02 pm | In Challenges, Cystic Fibrosis, Cystic Fibrosis Related Diabetes, diabetes, insulin pump | 2 Comments

Still in the throws of the appeal process, I sit and wait, and wonder how long it is going to take for me to get the simple things I need. I would just buy an insulin pump and a monitor now, with my own money, but I know that my insurance would try to use every excuse in the book not to reimburse me. So, I am not going to risk it. I will play their game of sit, wait, pray and hope that the person reviewing my files is in a great mood that day.

Dr J. is currently writing my appeal letter, she sounds hopeful. But she was hopeful before the denial too. She is my doctor, she knows my health best, and she feels that I would greatly benefit from a pump and a monitor. But, it is the financial health care system, who is in the business of making money (who can blame them!) and not in the business of taking care of the sick, who is making the decision about my health care. Sick and twisted if you ask me!

I will continue to struggle to get my blood sugar levels under control in the mean time, using old fashion ways. Wishing they would hurry up and grant me my wishes so I could go have sinus surgery. (maybe I am the weirdo wishing for surgery!).

Surgery with high blood sugar levels is very risky. Infected sinus drainage (CF is not a pretty disease) gets into my lungs and causes even more problems. A severely deviated septum is causing me to get infections in my sinuses about every three months. Sinus surgery would greatly improve my breathing, improving my life.

On a much happier note, I have discovered that improv-comedy is great respiratory therapy! hehe!

The 5,000 calorie a day diet

January 21, 2008 at 8:02 pm | In Challenges, Cystic Fibrosis, Nutrition | 20 Comments
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Imagine being stick thin, the “perfect” model body, AND being able to eat copious amounts of anything and everything you could stuff in your mouth. This is called the CF Diet. High fat, high calorie, no limitations.

stick manIt sounds like a dream to some. But for me, it is a nightmare. Since my digestive system is compromised because of complications from Cystic Fibrosis, I must eat at least 5,000 calories a day just to maintain my tiny 106 pounds on my 5′4″ frame. My non-”normal” system does not absorb nutrients as well as it should.

What does 5,000 calories look like? Each of these items equals about 5,000 calories.

56 Cans of Progresso Soup
30 Taco Bell Crunchy Tacos
8 Burger King Whoppers
11 Good Times Teriyaki Chicken Sandwiches
6 Qdoba Chicken Burritos
64 Hard-boiled Eggs
70 Plain Bagels
70 Medium Sized Apples
17 Slices of Pepperoni Pizza
35 Dairy Queen Ice Cream Cones
56 Bags of Microwave Popcorn

That is a LOT of food!!! There is only so much volume that my little stomach can handle.

Eating has turned into a job, a very boring job. Usually I don’t even feel like eating at all because it is so much work. Then on top of it, I need to eat more? It is tough. I try to combat it by eating a wide variety of tasty creations. I stay away from dairy because of an allergy that makes me cough. Dairy (butter, cheese, whole milk) is the easiest way to add extra calories to my diet, but I just can’t eat them. My body craves foods like vegetables and fruits which are all super great for me (I need the vitamins and minerals), but also not very calorie dense. Eating fast foods like Big Macs and french fries make my tummy ache.

I am learning to cook, but am having a hard time finding really great recipes that are nutrient rich and tasty. I would LOVE for you to send me your favorite recipes. Maybe you have a favorite comfort food recipe. From quick and easy, snacks, to full fledged sit down dinners. I would love to gather a bunch of recipes to share with other people with CF who have the same issues finding healthy and tasty recipes. Variety is the spice of my life!
Send me your recipes!! Put it in a comment, shoot me an email, I can’t wait to hear from you!

blah blah blah!

January 19, 2008 at 5:35 pm | In Life in General, Support | 2 Comments

I need to apologize to all of my friends and my constant blathering about my diabetes, insulin, future pump, CGM and my blog. I am just so excited to be learning all about it, I just can’t help but pass the info on!

I hope I don’t sound like Charlie Brown’s teacher!!

“But you look healthy” – a daily frustration.

January 18, 2008 at 5:46 pm | In Challenges, Life in General, Support | 1 Comment

Such frustrating words in my mind. But this is life with an invisible disability. Several in fact.

Just before my last IV antibiotic tune-up I had an experience that made me so upset. I was out running errands with one of my friends. I was having a hard time breathing that night in the cold air. My lungs were really plugged up and the cold air kicked my asthma in to gear. It was one of my bad days.

As we were crossing the parking lot to enter one of the stores, my friend hurried in front of a truck that had politely stopped to let us pass. Now my friend, with clear and healthy lungs politely hurries across in front of the truck. Me on the other hand, with a large cramp in my side, from trying to keep up with my friend, tried to cross as quickly as I could. Which was not fast enough for the lady in the truck. I was greeted by her yelling “hurry up!” with frantic hand waving as if to push me across the street.

parking lot

I about cried. Obviously this lady has NO idea what I was going through, or that I was actually pushing myself to get out of her way as fast as my little lungs could take me. But in her mind I looked just fine and had no other reason to be slow except that I was lazy.

I am not the only one who experiences things like that. My aunt who’s body has Myasthenia Gravis has problems with this too. She looks just fine on the outside, but inside she is not. She is not lazy, her body won’t LET her move.

I wish this world was a little more patient and understanding and knew that everyone is not perfect.

DENIED! – Explained.

January 17, 2008 at 9:54 pm | In Challenges, Cystic Fibrosis, Cystic Fibrosis Related Diabetes, diabetes, insulin pump | Leave a Comment
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I had to have my doctor translate the denial letters to me. I was denied the insulin pump because I do not have Type 1 diabetes. Which, they are right, I don’t. I have CF Related Diabetes. But I still NEED insulin. There are so few of us out there with CFRD I don’t think my insurance understands what CFRD is. Hopefully my doc can get their decision overturned after educating them about my challenges.

I was denied the Continuous Glucose Monitor because it is too new on the market (FDA approved it last year) and apparently there have not been enough studies to show that it is affective. I don’t see how this device would not be affective. I want it because I live alone and am deathly afraid of having a seriously low blood sugar level and passing out. So I err on the high side, which is not good for my body. With a monitor, I could set it to alert me if I started to go to low and I could treat it before I got to a dangerously low level. I wish they could understand that.

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