I realize we are just getting started helping our children and family as a whole unit live and succeed with chronic disease. We have definitely had more experiences in the hospital and at the doctors than an average family, but know there are other families that absolutely have had more experience than us. Watching each of our infants experience at some point an extended hospitalization left us feeling confused, afraid, lost, guilty, and often very angry. In the beginning I remember a toe to toe nose to nose discussion with one pulmonologist on call one day in the hospital with my 7 month old son (who heart breakingingly screamed bloody murder through every IV). The pulmonologist told me to “get used to this mom, you have to get used to this, you have children with a chronic disease you need to expect weeks in the hospital.” I was furious. I told her I refused to accept the hospital as normal and I refused to quit asking to go home as soon as we could as often as I could. She never came back to our room, and I never saw her again. She asked another pulmonologist to handle us (lets be honest me). I think I would like to let her know now that I apologize and I understand. I’m not happy about it, and it still feel angry about it a lot of the time but I understand that being intermittently hospitalized is part of my children’s life. We also understand that our emotions are second to helping our kids do their best to prevail with positivity and hope. Our attitude will be mirrored and magnified in them especially if it’s a negative one.

Sunday, May 6, 2018

Loosing More Than A Ruby


 I am blowing off the dust of the blog tonight. I just have this post rattling around in my head and I have to get it out. It’s bothering me the rattling.

First. I received this text from a cherished friend on January 24th.

“Hey I’m tired of wearing my fat clothes. Do you want to work together to loose weight? I don’t want to put up money or prizes or anything. I just want to work together and encourage each other along the way. Once a week weigh in’s. Are you in?”

It took me a minute to decide what to tell her. I knew I had gained a significant amount of weight not only with adding on a dozen pounds or so after each of my four babies but even AFTER my last baby was born gaining an unhealthy amount of weight. But with it all, the weight I mean. I still felt like I had confidence and accepted my body for what it was. I still felt beautiful. Until recently. Enjoy a digression…

Starting Weight
Part of my confidence and joy (despite my weight gain) in life comes from my hobbies. I love to create. Typically through fabric, sometimes paper and pen. Sewing my own clothes just how I want them fills me with happiness. Since my first job at Sally’s Fabrics I’ve been coo coo for sewing my own clothes. Thrilling. This past year I particularly enjoyed a high waisted maxi skirt. I even made two of them (which for me is restraint because when I love something I make I usually obsess until I have one in 12 different colors, like a fabric gluten). The first one turned out (in my mind which is all the counts when it comes to wearing what I sew) so fantastic that I made another to wear to my husband’s Christmas work party. I loved the femininity of the floor length skirt and how flowy it was. I felt like a queen whenever I wore it. I could get down on the floor with the kids and sit cris cross. It had pockets. It had color. I loved it and wore it often. One time earlier this fall I even wore it as I “saved” a kindergartener on my sons playground who had gotten their knee stuck between the bars of the playground equipment. The principal was running to get some WD40 and I jumped to the top of the playground structure with another playground aide and helped get his leg out before any grease could arrive. When the bell rang and all the kindergarteners ran for their teacher lines I stood at the top and couldn’t help looking back at my shadow to see my skirt billowing like a super hero cape. Power skirt. But then this very power skirt that I loved was what I was wearing when within the same month two of my long term hair clients asked me while I was cutting their hair if I was pregnant. I was shocked both times. Especially when one lady even had the guts to add, “are you sure?” These were mature women too. How could they say that? My heart was so hurt. And then all that confidence I had in my appearance and my awesome power skirt crumbled to the ground. I felt like I knew then what I must look like to others and it was devastating to think that I had gained enough weight to lead people to believe I was pregnant.

So yeah I was interested in giving weight loss a go with my friend. I’d never really ever tried dieting. I just watched myself gradually rise up in weight passively over the past 10 child bearing years. Just watching and buying bigger jeans and looser blouses. So I agreed to start with her that next Monday January 29th, 2018. She is a faithful friend. Diligently coming over every week to my house so it would be more convenient for me to make our weigh in appointments.

At 18 Pounds Lost 
I was shocked and invigorated when weight began coming off. So grateful that she’d asked me to do this with her. My one and only strategy for the first month was calories. I know protein keeps me feeling better than when I just eat carbs but I didn’t go crazy with a strict food plan. I simply ate portion sizes of the things I enjoyed, logged them in the FREE version of the UnderArmor My Fitness Pal app and went about my way. Keeping my calories around 1,200 a day in the first month I lost 18 pounds. No exercise, just counting calories for real. Never having dieted before I thought this would be my normal monthly average. YEAH NO it slowed down. The next month (March) I was able to loss 9.6 pounds and began attempting to reach my step goal (10,000) more diligently. Then for April I focused on closer to 1,000 calories a day and was able to loose another 9.6 pounds then add to my delight that I can run two miles (taking a few walking breaks) which I’ve never ever done in my whole life. Total I’ve lost 38 pounds so far. That is 6 more pounds than my baby girl weighs right now. So I can pick her up and hold her and literally feel how much weight I’ve lost. I’m thrilled and happy for the things I’ve learned about myself. I’ve learned what my triggers are. Having to say no to people, or experiencing conflict with family members was a big trigger. When my kids are sick is another. It’s made me into a crier when I’ve never been a crier. But that’s been way better than eating a sleeve or two of EL Fudge cookies. I feel better after I cry as opposed to feeling sick and still sad and upset. Its been empowering and really fun to see my clothes get too big for me. I fit into a jean size 6 times smaller than I was when I started. I’m not done yet. Really to get to the middle of my “healthy weight range” and not just teeter at the top I have still about as much to go as I’ve lost. But I’m excited about it. I’m so excited that I tried and that I’ve learned so much and am enjoying making healthy changes and healthy choices.

At 38 pounds lost. 
All that being said I still eat things I love and that are especially delicious and appealing but just less or only one item that is especially indulgent every once and a while. I bank calories for these foods to enjoy periodically. So here is my short list (my circle is small folks and I’m OK with it)

East Valley Arizona Food List Totally Worth Every Bite To Save Calories For List.

1.       A junior sized white pizza at Floridema’s Italian restaurant on Gilbert and Gaudalupe. This especially terrific pizza not only is a garlic and cheese lovers dream but the crust is boss. Not a hog that fills your bite up with nonsense bread but a gentleman’s crust who says, “yeah sure go ahead we work together here on this pizza I’ll be here to help you enjoy these bites. Each and every one.”

2.       Blueberry streusel donut from Hurt’s donuts in Tempe. I’ve said it before and I’ll say it again. This is something you need to taste in your earthly life. Do it. This streusel is unbeatable. The blueberry donut inside will also create a hashtag in your mind and it will be #bombdiggitybro and second runner up at Hurt’s is a pink lemonade cake donut. Trust me on this I know cake donuts.

3.       Anything on the menu at Carolina’s Mexican Food Restaurant (we convene at the Mesa Country Club location, but my brothers have been driving to Phoenix for the original local for years.) So I started as a huge fan of their mini chimi’s but am really super into the bean tostada (lame you say, well how about you take a bite and then we can talk. But really if you say anything bad I don’t want you to say it please). My husband goes for the mixed red and green burrito no beans. But what makes my mouth water just thinking about it are the chips and hot sauce. I just love it. Love is not an exaggeration.

4.       Sugar cookies from The Sweet Tooth Fairy. I know that they are well known for their cake bites but guys listen up those sugar cookies can’t be beat. Other bakeries get it on the décor and yeah their pretty I’ve even been tricked by their beauty into buying them (Kneaders sugar cookies) but am totally disappointed on taste. These pack the double fisted punch of both glamorous beauty and spectacular taste to match.

5.        The black cherry oreo dipped cone from Chocolates and Crème’s on Val Vista and Baseline. Cover your eyes and ears kids but one bite of this and I just wanted to make out with my husband. IT IS that tasty. But I didn’t do that because hey show some respect it’s a public place were not animals. It’s that good though it’s no joke.

6.       My most recent discovery is a new twist on an old favorite. I always thought people were weirdos for ordering their hamburger wrapped in lettuce at In N Out but now I’m one of them. Absolutely a lettuce wrapping weirder. I read up on the secret menu and found something that I knew I would love. I asked them to give me a “mustard grilled cheeseburger with chili’s protein style.” I’m so excited about this burger. Wrapping it in lettuce as opposed to the bread only enhanced the awesomeness of a mustard grilled cheeseburger with chili’s. I’m so happy that the secret menu is not really a secret and that I will always order this now when I In N Out.

I’m exhausted from writing about all my favorite foods. This post had nothing to do with my kids or how CF Is Not Forever. So to sum up on that side of things. Recent blood work came back with some typical flags and some dreaded flags. We’ll have some diabetes screening in May. Just a screening at this point and most likely a fasting glucose test but it’s time to get some knowledge on CFRD (Cystic Fibrosis Related Diabetes) and how we can work together as a family unit to be ready for this new challenge and reality of the repercussions of life with broken pancreases. Were also hoping to get on board with the newest CF med for our mutation since our oldest kid is old enough. We have high hopes of starting over the summer as to test out inevitable side effects NOT during school time.  I’ll try to write more. I like it. Not as much as sewing my own clothes but its fun. I need to write more often again.