A Bold New World....

Managing a chronic illness is beyond time consuming. It takes every minute of every day consciously engaging to simply stay in step with a chronic illness. However, I'm always learning new ways to simply and to reduce time spend.

I was a later user of an iphone or of any phone that allowed the use of apps. I'm finding that its a bold new world, with so many options in terms of electronic organization. I've found a few apps that I really love but one in particular has really helped me!

MyFitnessPal, has been life changing. Seriously. Having to track caloric intake plus counting carbs for insulin dosage can be daunting.The App allows you to enter what your eating or scan the barcode from the huge database it also remembers/stores your foods that you enter. The best part is that as you add food it allows you too see what your calorie, carb, sugar, fat, etc counts are. It also allows for exercise to be entered. All this is based on what you've entered as your body type, exercise level, and work type (sedinary, active) or you can over-write the whole thing to enter what calorie level you want. For me, I over-wrote it as 3000+ was not a preset setting :-)

For someone who must achieve 3000+ calories a day plus give 1 unit of insulin for every 15 carbs consumed, this apps makes it so easy and simple to track. The very BEST part is that I can take this information to my doctor. They can easily access what I've been eating and if based on what I'm eating I'm getting enough insulin.

Anyways, technology is pretty cool and in this case it's helped me simplify. In addition, I feel like I'm more accurate in my calorie reporting and carb counting.

Do you have a favorite app to help simplify your health? I'd love to hear about it.

~Doodlin'

Listen Up, Not All Calories Are Equal.....

A few weeks or days ago an article about calories was floating around and I happened to take a gander at it, then upon finishing the fairly basic overview of the fact that not all calories are the same I see a young child with CF eating a famous black-and-white cream filled cookie for breakfast, because of the caloric demands CF'ers need.

Here's the thing. Most CF patients do need tons of calories per day. I mean a truck-load of them. And if we're honest all those gorgeous brightly colored fruits and vegetables at your local market do very little in terms of calories. It's not uncommon to hear CF'ers talk about eating a value meal from any of a dozen fast food chains frequently (daily even). Heck, I used to pull my beat-up car thru the fast-food window numerous times a week and I thought nothing of it, in fact I thought I was being "healthy" because my body needed and required those calories.

While growing up I would come home from school to eat an entire box of Frost Flakes. Yes, the whole sugar-loaded-zero-nutritional-valve box of garbage. My mom and I we're happy to see that I could put away so much for the sake of the calorie intact burden I was under each day. My mom would send me to school with a few bucks, because when I reached high school they began putting vending machines loaded with junk in schools, and it was an easy high-dose of calories.

I needed the calories and still need a truck load of calories.

However, and this is a BIG but, not all calories are equal. Just like anyone else on the planet we are only as good as what we put into our bodies. I, probably, better than any parent or non-CF'er understand the burden of consuming those precious calories. I'm here to tell you that as an adult all that junk plays a dangerous role later on. Hey, I'm not here to judge. I've been there, I traveled that route and I'm here to tell you its not as simple as it seems. These habits come back to bite us.

As CF'ers are living longer we're learning more about proper nutrition for us rare breeds and how to get those calories. It should NOT be from cookies, junk food machines but rather wholesome foods. Why?

Wholesome foods (fresh veggies, fruits, nuts, grains) do more than simply help us reach our daily caloric intake. Foods high in dairy promote mucous production, so finding alternatives is highly beneficial. Many foods can help with inflammation, which most CF'ers will at some point suffer from. They can help prevent Cystic Fibrosis Related Diabetes (CFRD), help prevent kidney stones, probiotics can help reverse or ease the negative affects of frequent antibiotic use. And on and on.....

Something that many don't realize is that CF'ers have chronic infections or bacteria growing at rates that the body can't control. What does bacteria eat or need to grow, sugar! So, why are we pumping ourselves full of sugar-laden foods. Not just cookies, baked goods, and candy. But what are we drinking? What about that bag of chips? You don't need to have a medical degree to find this stuff out. A simple search on the internet will give you more information than you probably want or just glancing at the ingredients.

I can tell you first hand that over the past 10 years I have slowly made changes to my eating habits. I'm not perfect. I still enjoy a Dr. P every once in awhile. I still pop a favorite cookie into my watering mouth. But, I do so because its a guilty pleasure and not something I rely on to meet my calorie demands. I make as much as I can possibly muster from scratch so that I can control the calorie levels with supplemental additives. I make smoothies from fresh fruits and add things like coconut oil. I pack along trail mixes and mixed nuts. Ever study the labels on nuts or nut-based butters? They are loaded with calories and are good for you!!! I don't buy milk and use milk based foods sparingly.

So, next time your temped buy the cookies for breakfast think about making a shake packed with fresh fruits, almond butter, a tsp of coconut oil, coconut milk or whatever fancy's you. I promise you'll feel better over-all. Your body will thank you years down the road.

because....

Not All Calories Are The Same!

~Doodlin'

It's All About the Routine

My struggle with CFRD (Cystic Fibrosis Related Diabetes) is no secret to those who know me and read this blog. I struggle with diabetes more than I do with my CF. There are few factors that aid in the struggle. I wasn't diagnosed with CFRD until I was 13 or so, whereas I haven't known life without CF. Another aspect that makes diabetes a struggle is that it requires multiple injections a day and numerous finger pokes whereas their is no poking on a daily bases to treat my CF.

I humbly admit that I was far from the model diabetes patient. For many years I did the bare minimum and tried to forget about it. Something changed about 9 years ago, I started to care. I started to see the importance of getting this aspect of my care under control. I began with baby steps so that I didn't overwhelm myself and throwing in the towel. I started to by committing to checking my glucose levels 3 times a day. As this became a routine occurrence each day I added something else. I kept building on this model and I started to see and feel results.

I am a learn the hard way kinda gal. I have to feel the impact before action is taken. It simply isn't enough to hear the statistics or even have the unpleasant symptoms described to me. I have to be affected to change course.

Fast forward to present day me. For the most part I have this diabetes thing under control. I have fit it into my life and it feels rather natural. I have a routine. Routine keeps me healthy. Routine keeps me on track. Because of routine I have learned what bumps me off course and what it takes to get back on course.

Of course, I could do even better. Which I continue to evaluate and make changes as I can handle them.  I have learned a lot from having diabetes. I have learned that diabetes truly requires one to be on top of their care for the immediate present while many of the treatments for CF are to help prevent damage in the future. Meaning, if my blood sugar drops too low I immediately feel the symptoms or worse will need to be rushed to the emergency room, but with CF if I skip a treatment there are no immediate symptoms.

This is why for me having a routine is essential. My routine helps me always know what's going on with my diabetes while being proactive with my CF. My hope is that I can keep my body in as good as healthy at this very moment as well as in the future so that I can be present in life with my family and friends.

A motivating saying I have posted to read every day is ....."Doing all my meds is NOT submission to my CF but rather FREEDOM from it." This is easily transferrable for any illness we struggle with. A routine allows this statement to be true.

Do you thrive in a routine?

~Doodlin'

Our Anniversary Week: Few Words Lots of Photos!

We are back from 9 days of glorious togetherness. After nearly 5 months of only having one day a week together we capitalized on the fact that our anniversary fell on Labor Day this year. B was able to take 4-days off from work, plus Labor Day, plus the weekend pre and post Labor Day!! We planned a great adventure, something I have never done, yet B grew up doing; backpacking.

We hiked with packs (backpacks load with the necessities of life for a few days) to 3 gorgeous lakes near Sisters, Oregon. 

Me with a 30lb pack on my back; after crossing a creek!!

B, with the heaviest load!

The first day was beautiful. Not too hot or too cold which made hiking relatively easy. Or easier than I had anticipated it being. I just love how every year we have celebrated our anniversary in different ways which has allowed us to see each other in different situations, under different circumstances thus lending to a deeper understanding of each other. B is a natural leader when outdoors and I am a happy follower, the dogs however don't know which direction suits them.

The first day we hiked fairly early in the morning so that we could set up camp and have time to relax before evening set in. 

#1 rule for survival is make camp and get a fire started. My leader taught me this.

After setting up camp, we took advantage of the amazing views. It was so great to not have our cell. phones, laptops, or even a radio. We simply sat on the banks and listened to the sounds of nature. I know this sounds hooky but its really calming and aided to a detox of life's frustrations.

I mean look at this view-

We set up camp just across the lake amongst the patch of trees.

Night fall sets in much earlier it seems out in the wild, probably because there are not lights to ward it off. So, I took to the tent to get cozy and do my nebulizer treatments. Yep, CF care doesn't stop even in the wild thanks to my portable battery operated compressor. I forwent the feeding tube feedings because I only do it 3-4 times a week and used the days camping as my off days. It should be noted that while in the tent I had ridiculously crazy hair due the static.

The first night was cold. We even each had a dog in the sleeping bag with us and we all were still chilly. Probably the location and altitude we were at.

#2 rule for survival is that snuggling close is essential for warmth. My leader taught me that.

Needless to say, we all were thrilled for the morning sunshine!

After letting the sun warm our bones, we packed up camp and headed to the second lake. For which we completely forgot to take pictures of. But I can assure you it was just as beautiful but also the smallest in the chain of three. The second lake was not far from the first so we hung out for a bit and continued on the third and final lake.

Once we got to the final lake we set up camp once again, gathered wood for the evening fire. The fire was the only way we ate. We shopped at  TJ's for dried foods that could easy be rehydrated with boiling water. It worked out great because dehydrated food is light when carrying everything in one's pack. We had oatmeal each morning, with hot tea. Had some indian fare with naan for dinner one night, mac n cheese another and of course hot coco. These types of foods were tasty yet easy to prepare with some hot water. We also had things like energy bars, crackers, etc. We used a water pump (very light weight) to get our drinking water from the lake. That water is naturally so refreshing, I actually am missing it. 

This entire experience was refreshing for my soul. The quietness, the calmness, the majesty of it all was surreal. I think most who have chronic illnesses and rely heavily on modern conveniences like electricity or running water to maintain health are afraid to do such things. I was. What if I got sick out in the middle of no where. What if, what if. I prepared as best as possible, had just visited with my doctors and took the leap. I am so glad I did. I actually wish the battery life in the portable compressor lasted longer so we could have spend some more time out there. I packed insulin and the neb treatments, they were kept cold by having them in tupper ware containers and placed in the lake (weighted down so they didn't float away). Then while hiking filling a water bottle with the cold lake water to keep the temperature down. In the end, it worked out wonderfully and I can't wait to explore more of our beautiful state this way. 

We were to the far left of the Three Sisters at the bottom of the far left ridge that has just a dusting of snow!

Happy 6th year to us. Each year presents new challenges and new accomplishments; both collectively and individually. I am so glad God placed us together to enjoy this journey with. B, you make me a better person, you gently push me to reach new heights, you allow me room to grow and I look forward to many more years with you. Together we can do anything, this I am sure of!

After backpacking we drove into Bend to shower at Gregor's (my bestie). Visited with her a bit and then headed to spend a day with my Nana. Such a great week. Oh, yes B wore the same cloths for 3 days, the only downside of the whole week :-)

~Doodlin'

Am I An Expert?!

Am I an expert? Nope. Not even in the field of CF or diabetes or arthritis or patient advocacy or anything for that matter. I do have more knowledge than some on these and other various topics. Why? Because I walk in the trenches of the disease and areas surrounding the disease.

Every. Single. Day.

Just like someone with straight hair understands the difficulty of attempting to curl it. Does this mean they understand every core aspect of everyone who has straight hair? Nope. But I am sure they have an opinion on what hair products seem to work better than other, why? from experience.

So, dear nay-sayers, while I am not an expert (nor have I ever claimed to be) I do have an opinion whose foundation is fairly strong because of my experience because my reality is CF, is diabetes, is arthritis, is patient advocacy 24/7 and all things that intermingle between it all.

It is hurtful when those very close to you judge how your handling your disease(s). When they assume and treat you as though you are ignorant in the topics surrounding your disease(s) only to use their perceived assumptions against you. To call you names, to run your entire existence in the mud, to make an already difficult life (at times) even more difficult. We do the best we can with the information given to us. Sometimes we are wrong. Sometimes we mess up. But please don't think we are ignorant or unknowing because dear one we spend thousands and thousands to get expert advise. We are treated by some of the most brilliant people in the world.

We would be in a better a place if you could support us. Help us. Encourage us. Promote healthy two-sided conversations. Until that day comes all I can do is forgive your nasty words. Rise above to a better place and hope for a better encounter next time.

~Doodlin'

Poking Away at Perfection

Today marks exactly one week since I have started incorporating the new insulin into my routine and I have to say I am doing okay with it. Not perfect but okay. If you missed what's going on, click here, for the backstory.

The new insulin is very quick acting, which is something I am not used to and that has been an adjustment. I started off giving the insulin based on what I was going to prepare, then preparing said meal, only to end up with low blood in the middle of my meal, which if you have or know someone with diabetes you know that it can cause you to eat more because of the way low blood sugar makes you feel. This low blood sugar over-eating causes a spike in blood sugar because you ate more than you anticipated and didn't give enough insulin to cover the additional intake. See the viscous cycle here?

I quickly figured out to make my meal and just before I put the food in my mouth to give the insulin. This method works beautifully if I am home or in an environment I feel secure in. However, if I am not secure or at a restaurant, driving while snacking, immersed in work/school studies, etc I completely forget all together. I am really trying to figure out different ways to "remind" myself to test my blood sugar and then take the insulin based on what I am going eat. Practice makes perfect, right?!

My biggest reward is that my blood sugars ARE starting to be controlled. I am having less really high readings and am starting to feel better. I have more energy, feeling less sluggish after meals and way less moody. I knew I wasn't going to have this perfected immediately and have given my self grace about it. If I didn't I would feel like a failure becoming frustrated resulting in giving up. I have also recognized that no matter how perfect of a routine I follow it might not be enough, our bodies chemistry is at times unpredictable, all I can do is do my best!

If you're new to CFRD or diabetes, don't give up. Continue to work with your care team to figure out what is right for you. You'll feel so much better.

I will continue to poke away at getting this diabetes thing under control and mingled into my lifestyle.

~Doodlin'

CFRD you're a thorn in my side

As of late my CFRD (Cystic Fibrosis Related Diabetes) has been a real struggle. CFRD is its own class of diabetes and has been a big struggle in my life to maintain since I was 13.

Diabetes in people without CF is known as either Type 1 or Type 2. Type 1 the body can't make insulin, whereas, Type 2 the body lacks normal responses to the insulin and doesn't make enough of it. With CFRD the body can't make or use insulin. Unfortunately, CFRD affects roughly 15% of CFer's. CFRD is also diagnosed and treated very differently than diabetes found in people without CF.

CFRD has some features that are found in both Type 1 and Type 2 diabetes. Just as with Type 1 diabetes the pancreas doesn't make enough insulin, therefore, people with CF have insulin deficiency which is most likely a result of scars in the pancreas because of thick mucus. Some people with CF get diabetes because they are insulin resistant, meaning that the cells in the body don't use insulin the right way so more insulin is needed keep blood sugars managed.

My struggle with it is that I really hate testing my blood sugar levels and giving myself insulin shots. I can take oral medications all day long but this diabetes thing has always been a thorn in my side. When I was first diagnosed at 13 I did take insulin with each meal (or least I was supposed to) but I had a difficult time incorporating that with all my other medications and treatments. So, my physicians found an oral drug that  I could use along with regular exercise. This worked for years, probably because of my level of physical activity. Taking oral pill alone stopped working about 7 years ago for which my physicians placed me on a once a day insulin called Lantus which is a long-acting insulin.

Mind-you, my sweet dear physicians were sort coddling me. What I really needed was some good old insulin with each meal sort of a regime. I sort of had to face that with having my G-tube placed because I need insulin to cover the massive intake while sleeping. I began taking two different insulin's at the start of my feeding tube cycle, then the Lantus in the morning and continued with the oral for meals. Over the past few months it has become apparent that the oral is simply not working. I am now adding yet another insulin that must be done with each meal. That take my insulin tally up to 4 different kinds.

I will find away to incorporate this. I must.

~Doodlin'

High-Blood-Sugar-Induced-Crankypants

It's funny, okay, not funny but seriously dangerous how many times I have to learn a lesson before the lesson learned sinks in. I have been diabetic since I was 13 yrs old so I have had enough years experience to know that I should NEVER guess my glucose (blood sugar) levels. My guess-o-meter is critically flawed compared to my fancy One Touch meter, that was made for such testing.

The other night I had a ravenous appetite and consumed a good healthy amount of snack food. Not nutritionally good food but straight-up junk, like sugary cereal. I had tested before the consumption began but thought I knew best by making the decision to not test again after the eating binge began.

About an hour later B and I were talking and apparently I had a bit of a bad attitude causing him to ask me if I was upset. This should have been trigger #1 to test my blood sugar. I either was already too far gone in my high-blood-sugar-coma or really just didn't think about it. I truly believe is was the coma. I replied to B that I wasn't upset, therefore, we began watching a regular show for the night and I fell asleep after 5-10 minutes. Upon watching up I was a bit shocked as to why I was so sleepy, trigger #2, but again did nothing.

It wasn't until I tested again before going to bed did I find out that my blood sugar was 290! That is WAY high and it probably was higher at the peak just prior to me falling asleep. My crankiness and bad attitude didn't wear off until I had my sugars back down to a safer 150.

Man am I stubborn. I am proud to say I am checking more times per day now. I hope I can stay motivated and my fingertips don't fall off.

~Doodlin'