Skinny Summer

With CF you just can't seem to have it all. This has been one of my healthiest summers lung wise in several years and I am so grateful for that! However, life with CF would not be life with CF unless something was a bit off. So despite feeling really good overall (minus a few low energy days), being back in my exercise routine, getting through each day without a nap(!!), I have one little CF issue to work on. For some reason summer is such a hard time for me to keep my weight up!

If you followed my blog you may know that maintaining my weight isn't a huge issue for me (except when it was a huge deal) and I can usually manage to maintain at least 120 pounds. Being 5'4" the doctors start giving me the side eye when I weight in 120lbs, but they don't get too freaked out unless I drop below the 120 threshold. Right now I am sitting right at around 119/120 and I know that I need to be careful not to let it slip and lower.

You know what though? Summer is the time for juicing as much produce as you can gather. Summer is for eating plump red tomatoes right off the vine. Summer is for popping fresh blackberries and blueberries into your mouth on a hot summer afternoons. Summer is for ice cold watermelon poolside. Summer is the time I like eating fresh and light and as much from my garden as I can. But now that I can feel my shorts falling lower on my hips and my scale is slowly disappointing me I know I need to pull out some of my old weight gaining skills and start putting on my winter weight...in July

Bulk Up Coffee Lovers Recipe

There is this new fad among coffee drinkers. I heard about it several months ago when my dietitian told me about this buttered coffee fad. Another patient had mentioned it to her and she proceeded to mention it to me. Just as I was intrigued but ultimately confused, so was my dietitian. She wasn't sure the recipe or how it even worked, but she knew you blended butter into your coffee. Yes, you read that correctly, butter in coffee! You can imagine why we were both a little confused.

Now the recipe I am sharing is not this buttered coffee, but you can find it on many food blogs including Pioneer Woman's blog under crazy coffee. I tried it myself because butter, oil, coffee and a blender is something I just couldn't NOT try because it is just so weird. My first sip all I could muster was a perplexed, "huh?" As I sipped the last few drops in my mug I was still a little confused by what I was tasting. I still wasn't sure I liked it, but I didn't dislike it. So here is my own new and improved version of this butter-free buttered coffee:

Bulk Up Coffee
8oz fresh brewed coffee
2 T Coconut Oil
2T Half and Half
Put all ingredients and any sweetener you may use in a blender (or if your blender is broken like mine a food processor works, too. Hey, sometimes you have to get creative)
Blend till coffee looks frothy.
Enjoy!
*If you like your coffee HOT then you may need to stick it in the microwave for a few seconds.
**Coconut oil will solidify when cold so putting this coffee over ice isn't an option.

The best part?
Total fat: 34g fat
Total Calories: 200
Add that to your regular high fat/high cal breakfast and your are starting your day off right!

Homemade Larabar Recipe

I am venturing out to try something new for my blog. Today I am sharing... a recipe!! I am sharing this recipe because it is delicious, high fat, high calorie, delicious, easy to throw in your bag or purse, my entire family loves them, oh and did I mention delicious? Now if you Google Larabars you will find tons and tons of recipes, BUT there is actually a technique to them and it took me a while to perfect the Larabar so I decided to share my recipe that has been tweeked many times in order to make the perfect Larabar!

Homemade Cherry Pie Larabar
1c raw unsalted almonds
1 c dried unsweetened cherries
1/2 c pitted Majool dates
1T water

You will also need the "s" blade on your food processor.
I always double the recipe because they disappear so quickly in my house AND they freeze really well. In fact, I freeze them immediately after making them and take them out as I want them. They don't freeze solid so you can munch on them straight from the freezer if you choose. 

Put 1T water in your food processor (don't soak fruit like some recipes recommend because the texture will be super icky!) and slowly add cherries and dates. Keep pulsing until the cherry/date mixture sticks together and forms a sticky ball.

See how the cherry/date mixture is clumped together? This lets you know it is time to take the sticky mixture out.

Remove cherry/date mixture and set aside.

Cherry/date mixture waiting to be used.

 Place almonds in the empty food processor and pulse till nuts are at a rough chop (processing the nuts too much will release their oils and give you oily bars). 

Rough chop of the almonds

Slowly add the cherry/date mixture to the nut mixture. (This step is crucial because if you try to dump all the cherries at once it will burn out the motor on your food processor. Happened to me more than once, yikes!)

Almost done!

Remove nut and fruit mixture and place on wax paper.

It will seem crumbly at first, but as you work it the mixture will become stickier and hold its form

Use the wax paper to form it into a ball (it will be sticky so the wax paper keeps your hands cleaner!)

Flatten ball with your hands. Cover flattened ball of fruit/nut mixture with wax paper and use rolling pin to get desired shape and thickness.

Use a sharp knife to cut into squares or rectangles. My double batch makes 12, but I like to cut them big.

K and I always share the scraps from making the edges straight. It is our reward for all our hard work.

Wrap in wax paper, stick in ziplock bag and freeze (or refrigerate) and you are done! Make sure you enjoy one (or two or three) before you freeze them though!

All ready for the freezer!

This snack is healthy enough for anyone in the family to eat, but full of good fats which is great for us CFers. It is easy to bring along as a quick snack on the go and they freeze really well so you don't have to worry about them spoiling (not that they will last long anyway). Even my hubby who is not a snacker can't refuse a homemade cherry larabar and don't even mention them around me toddler, she is obsessed!

Enjoy!

Megace

I mentioned in a previous post that along with my lung function plummeting so was my weight. My BMI was getting close to the "underweight" category and the doctors thought that bringing my weight back up would help with my overall health and therefore help with my lung function. I can eat fine (about 3000 calories a day) when I feel well, but when I am sick, which is happening frequently now, I have absolutely no desire to eat. I also often didn't have the energy to really cook or make myself anything to eat when I was feeling feverish or ill. So I asked the doctors for an appetite stimulant to help me get out of my rut. Oh my goodness, I had no idea what I was in for.

The first day I took 2 of my 4 doses since I didn't receive it until late afternoon. That very same day I started to feel a little hungry. Within two days I felt like I always wanted a snack. I started opening the fridge so many times that Kaylee must have thought I had gone crazy. I was eating nonstop and still woke up starving in the morning. I think it helped that I was coming off of three weeks of antibiotics so I felt well. The combination of feeling well and having an appetite stimulant made me a ravenous pig!

I kept asking my husband if I looked fatter, a loaded question in most relationships, but I was hoping I looked a little more roundy. He kept laughing at me telling me it couldn't work that fast. Oh, but darling it did! I was 110 pounds (I am 5'4" for reference) last Monday when I started Megace. I am currently 117lbs only one week later! That is a pound per day! I actually was checking in the mirror today for stretch marks because I was worried I was gaining weight too quickly, but luckily found none. I only want to gain about 8 more pounds, but at this rate I will be there by next week!

I feel like I look better, I felt skeletal and weak when I was 110 and even the seven pounds has made a difference in my appearance. I also feel so much better. I am not sure if it is psychological because I look healthier so I feel healthier, but I do feel less weak and frail. Having an appetite makes me feel more normal as well. I may need to pick up a part time job to pay for all this food I am eating though!

Down The Rabbit Hole I Go

I have found myself in a place that makes no sense at all. It all seems to get "curiouser and curiouser" in the worst kind of way.

Last Monday, I went to clinic. When it was time to see my doctor (I usually see one of the two) both doctors came in to talk to me. I knew right then that things couldn't be good. You don't get two specialists sitting in your room if things are going well. My numbers dropped again. I am now dancing in the 20s. The 20s are a wonderful number when it refers to your age, not so much when it is your lung function. The problem is nothing makes sense and nobody knows why. Let me show you what I mean:

After getting super sick and losing a ton of lung function from the flu I had several rounds of IVs where my lung function went up slightly, but I could never get them out of the 30s which is far lower than my (old?) baseline of 50.  So after feeling like IVs and increased CPT wasn't getting me anywhere I decided go get more proactive and here are the results:

Hospital stay = 4% drop in PFTs
Increase CPT to 4x/day everyday for a few months (and going) = 1% drop in PFTs
Go on steroids = 4% drop in PFTs

And so the harder I try the further I fall. The doctors said multiple times that with everything I am doing we should see some improvement and at the very least I should be holding steady. I have no new bugs and the ones I do have are not resistant to anything, I am 100% compliant and do CPT 4x/day everyday. I don't have fungus. I am treating my Psuedo with Cayston and currently on oral abx as well.

 We decided to try one last ditch effort. I am going on an appetite stimulant. I keep losing weight with lung function and even though the dietitian was very happy with my food log I was quick to admit that I eat well only when I am well. When I get sick or fevers (at least once a month and often for a week or more at a time) I just can't find the energy to eat enough. We know there is a correlation between weight and lung function. We hope if I can regain my weight my body will be stronger and more able to heal or fight off germs.

We added a few other changes as well, but the main focus is weight gain and exercise (to build muscle and lung strength). It is interesting that in yoga last night the set was dedicated to building courage and facing the impossible. It felt appropriate given the feat I have ahead.

Winter Weight

Uhhh so somehow I managed to lose weight over this holiday season. Seriously? Who does that? After indulging in all the winter treats, holiday feasts, and fatty egg nog I somehow lost weight! Only a CFer could manage to lose weight when the rest of the country can no longer button their pants.

Gaining Weight and CF

Despite losing a lot of lung function I have somehow managed to gain most of the weight I lost when I got the flu despite breastfeeding a 14 month old. I was recently asked by a fellow CF mama how I successfully gained the weight back. I feel like I am slightly cheating by giving advice on gaining weight because although gaining weight has always been a struggle for me, I have always been able to get close to my goal weight. I have never been close to needing a g-tube so I know my struggle to gain weight is not nearly as hard as some CFers. If you are need of an extra 5-10lbs this may do the trick!

I gained the weight back by adding one small change into my life. Before I let everyone in on my secret I have to throw out this warning- although I find this trick to be delicious and work like a charm just the thought of what I ingest to gain weight makes my husband nauseous so I guess it is not for everyone. 

I have been drinking two Ensure Plus on and off for years and years. However, recently I started drinking both my Ensure Pluses in the evening with a little addition: 3 Tablespoons of Coconut oil. This is what makes my husband woozy, but I actually find it tastes pretty good! You do have to stir vigorously before each sip so that you don't get a mouth full of oil, but that is a small price to pay in my opinion.

Why do I use coconut oil you ask? First, it is the only oil that I could possibly bear to stomach in a drink. Could you imagine chocolate olive oil?? Gross! But chocolate coconut? Sounds kinda good. Second, coconut oil is easier to digest for CFers because it is digested by the liver rather than our damaged crappy pancreas. Now I have been cooking with coconut oil for years (and even add a little in my coffee), but I have never taken it in such large quantities. Let me do some math for you:

Three tablespoons of coconut oil has about 42 grams of fat and 390 calories. Add this to two Ensure Plus and you have 1,090 calories and 64g of fat. It seems really hard not to gain weight when you add so many calories and that much fat to your diet! Taking them at night means I am less likely to fill up on the Ensure during the day so I maintain my fat/calories intake throughout the day.

So there you have it, my little tip on gaining weight. Let me know if you try it and if you enjoy it like I do.

2nd Clinic Since Baby and "Dada"

I meant to post this Tuesday, but you know...

I left the clinic yesterday feeling a little beat up. I hate getting bad news. My lung function was down which wasn't surprising as I haven't been feeling that great. My doctor wants me to start Cayston again and call him in 2 weeks to give him an update. He is so hesitant to put me on any orals because of breastfeeding. I appreciate his concern for my daughter, but it seems a lot of CFers get orals while breastfeeding and do fine. I am hoping Cayston and a few extra treatments throughout the day does the trick, but I am not too confidant that it will work.


I expected my lung function would be lower, but had no idea my weight would be down too. I lost 6lbs in the last 3 months since my post pregnancy weight was a little higher. That is a LOT of weight to lose! I guess I got overly confident. I got through the pregnancy and the first few months eating when I was hungry and not worrying about calories. I think the combination of feeding a 17+ pound 5.5 month old and feeling under the weather didn't help in the weight arena. Apparently, I still have a healthy BMI, but I need to make sure that this weight loss isn't part of a continuous decline. I am actually more stressed out about my weight than my lung function because I am so emotionally attached to breastfeeding. I am not sure who needs it more, me or Kaylee. That night as I was nursing her to sleep (it puts us both to sleep) I was thinking that I would have no idea where to begin to wean her. We both find so much comfort, routine, and love with nursing. I have become as dependent on nursing as she has. As long as I don't lose any more weight my doctor is completely fine with me nursing as long as I want and so I am extremely determined to keep the weight on.

In other news, my husband joined me when I went to clinic to keep Kaylee entertained. The appointments are usually very long and boring. My husband spent the majority of the appointment letting Kaylee admire herself in the mirror and trying quietly trying to teach her to say dada. By the end of the appointment Kaylee eas whispering, "Dada" right back at hubby. That evening whenever she was playing she would whisper, Dada Dada Dada". It has been almost a week since she learned it and it only comes out as a whisper. It is amazing how they mimic every single detail.

Say What? Scale Drama

I have a little story about a scale...these never end well.

 After my positive pregnancy test I ran out to buy a scale. Unlike most pregnant woman I was not using it to ensure my weight did not climb too high too quickly, rather I wanted to make sure my weight did climb and as quickly as it wanted. Of course while making the purchase a little detail about myself slipped from my mind- I hate scales!! Let me explain why.

So I know weight fluctuates. Your scale will read differently in the morning vs night, different days in your cycle (when your not pregnant), and sometimes just when it feels like throwing a different number at you to throw you off. So I told myself I would weight myself once a week just to ensure I was maintaining or gaining. Yeah, here is the issue. I pee 100 times a day. The scale is in the bathroom. On my way to pee I see the scale and think, Ooohh I should just jump on real quick for fun. So I do. Not the best choice. I do try to weigh myself around the same time each day (before the shower and before bed) besides all the other random times I jump on just for kicks. This would be great and all except my weight jumps around like crazy!!! Two nights ago my weight read 126lbs which is great! Last night it read 124lb which is a little low. Tonight...125lbs. I have read everything between 122lbs (say what?!) to 126.9lbs (woohoo) and everything in between during the course of this week and it is only Wednesday.

I am sure bloat comes into play, but how can I possibly know if I gained actual weight or not? I know, having a degree in nutrition (but any google search would tell you the same thing. So much for 4 years of college), that a pound is the equivalent to 3,500 calories. Meaning to gain you need an excess of 3,500 cals and to lose you need a deficit of the same amount. Also, pregnancy in the 1st trimester uses only about 300 cals/day. So in order for me to gain 1lb I need to consume an excess of 3,800 extra calories. Wow! To lose I need a deficit of 3,200 cals. Again, Wow! There is no way I am losing/gaining that many calories in the matter of 24 hours! Impossible!! So how do I know how much I have gained and how much is my crazy scale (which is pretty consistent when weighing my husband) and how much is bloat? I don't. So for now I curse when I see my scale and refuse to even tap it with my toe...until I wonder if maybe, just maybe I gained a little weight and jump on. It usually ends with me staring dumbfounded at the numbers glowing on the display screen and walking away scratching my head.

Currently, all I can say is I may have lost 3lbs since becoming pregnant or I may have stayed the same or I may have gained 2 pounds or well...hell your guess is as good as mine!!

That's Nuts!

 I left the house this morning after getting ready for work which included eating breakfast only to realize that I was still hungry!! Bummer. I very quickly realized I would never make it until 10:15 without a snack, but I was already headed towards the freeway so there was no turning back.I started frantically digging around my school bag looking for something to stave off the hunger. Sure enough my hand fell upon my emergency snack Tupperware. Like any good cyster I keep emergency food pretty much everywhere: my teacher bag, every purse, the classroom, etc. You never know when hunger might strike. This also means I keep emergency enzymes everywhere too. I actually found three full bottles of enzymes in my teaching bag this morning. Can you say overkill! I am proud to say I am down to one full bottle in my bag although I have one stashed away at school too. Anyway, back to my story. So I found my Tupperware container of salted almonds.I must explain that I have enough almonds in the container so that I only have to refill it one every or every other week so it is quite sizable. Now keep in mind this is just something I keep in case random hunger strikes, my lunch didn't satisfy, or I have insatiable hunger such as today so I still had my morning snack packed away in my lunch. So I popped the top took my enzymes and snacked away. I was worried about my morning commute and dodging all the crazy morning rush hour drivers when I suddenly realized that all yes, ALL of my almond were gone! I ate a weeks worth of almond snacks in about 10 minutes.

I would make a horrible fat person, but I make a fantastic cyster! The morning commute was so distracting that I was happily unaware of my extreme binge eating. I have decided that I may have to bring a healthy fatty morning snack in the car every morning.

Speaking of eating obscene amounts of food, after discussing CF bellies in an earlier post I have decided that in the next few days I will dig through all my pics and find a good shot of my CF belly to post for the world to see. I usually suck in for pics or burn the pics that aren't flattering, but I am sure I can find a few. Stay tuned...

I Feel Bad For The Kids

As I have mentioned in other posts I drink Ensure Plus to help maintain my weight. You can read about my experience and addiction to said supplement here.. So I get a monthly shipment to my doorstep each month through my insurance. It's quite lovely having it delivered because it comes in three giant boxes and although you might be surprised, the billion pound boxes would be too heavy to carry out of a pharmacy. I usually drag them in from the porch and wait until the hubby gets home to put them in the pantry. He is so helpful :)

Anyway, the last shipment showed up and in my box six of my Ensure had been replaced by supplemental drinks for kids. They weren't even made by the same company as Ensure and I am not sure how they were mistakenly put in my box. I figured instead of calling and making them come back out to bring me my 6 Ensures, I would just drink the kiddy drinks. I know they have less vitamins, protein, calories and whatnot because kids do not have the same nutritional requirements, but it is better than throwing them out right? So I cracked one open and decided to take a swig...Oh WOW! They are HORRIBLE. They were so disgusting that I had to run and grab a regular Ensure to quickly chase away the taste. Now the can says for oral or G-tube use so I can only hope people only put these in G-tubes because they are really nasty.

Even though Ensure has a stigma of an old person's drink I would much rather drink the senior citizens' drink than drink what they give those poor kids. Blah!

Getting Pudgy

In order to get on track to make a baby and make sure my body is healthy I am trying to pack on the pounds. Psychologically, this is uncomfortable for me. I am a classic CFer. Big ribs, skinny arms and legs and a belly. Ugh. Not so sexy!I always thought I was just meant to be skinny because any extra weight I gain seems to go right to my belly. Unlike most women I would love a little more fat on my butt and thighs, but alas we can't all have what we want. So I am ignoring my negative self talk that with the added weight my belly is the only thing growing and I am telling myself curves are in. I know, I know they weren't talking about stomach curves, but if lying to myself gets me through the day so be it.

Anyway, my weight is actually healthy and my doctor gave me the weight-for-baby-making stamp of approval. As you may know by now I am an overachiever and decided that I should gain some emergency weight in case nausea rears its ugly head in my pregnancy. My doctor told me to drink 2 ensure a day. Now Ensure is thick and although it tastes decent, it is thick and rich and not something you can chug like water. So at first it was a struggle to make sure I got two a day. I found that if I take one in the morning as breakfast (I am 100% positive this is not what my Dr had in mind when he prescribed them) and one at night I get my 2 a day. This worked well until...

I think I have become addicted!!! I didn't even really like them at first and now I LOVE them. I could drink them all the time. Whenever I want a snack or am a little hungry I think, "Hey, an Ensure sounds good about now." They are easy and require no prep so they are my go-to snack. I am a little worried I will be getting a little more than a little emergency weight. Yikes!