Friday, June 10, 2016

Society's view on my size

"You are so lucky you are so skinny"
"Must be nice to eat anything you want"
"Wish I could keep my weight down like you"
"You're so tiny and childlike"
"You could be in high school still"
"Wow you're thirty, you look 16"
or hearing these replies:
When I say I need to gain weight, "huh, Give you some of mine"
Always hearing I'm "cute or adorable," never hearing I'm "beautiful or sexy".

All these things can really hurt my feelings. But let me explain further where this post is coming from.

Today a friend shared on Facebook about how some posts are body shaming & lots of people don't realize it. For example she showed this picture:


It's not just this post, but I hear lots of people say things like " I'm not afraid to eat a hamburger. A man likes some curves." Or I hear remarks how all people who are size 0-2 are unrealistic and anorexic, etc. I understand a lot of times people may mean to help boost body images for girls who wear bigger sizes. I understand people wanting all girls to feel beautiful (especially considering the size of most models & society's views right now "needing" to being so tiny). But I wish people really understood the gravity of these types of posts or things they say. 

I'm 31 years old, I only weigh 101 lbs right now, I wear little girl's size jeans, I'm carded for everything, I'm mistaken as a high school student still. While I don't blame someone for carding me, it is tough when it's always followed by "Wow, I never would of guess you were 31, you're so tiny and young looking." I usually follow it up with " Yeah, I will love looking so young when I'm older" but deep down it hurts my feelings. 

Why you may ask.

I'm 31 years old, I'm proud to be 31. I have worked REALLY hard to be alive today (not that those who aren't with us haven't), but I'm proud of my age. I want to be a mother, I have a career, I'm married. I do NOT want to look childlike still.  I have Cystic Fibrosis, was born 12 weeks premature, do 10 breathing treatments & consume calories like crazy to try to stay healthy!!! Here are my thoughts that run through my head when I hear those top quotes I hear all the time:

"You are so lucky you are so skinny" -------- No, I'm not. I'm skinny, because my body doesn't digest food properly, I take enzymes every single time I eat. I struggle to keep my weight and therefore energy up. Being tired from not having enough calories is exhausting. Not having energy to carry laundry to the basement, not being able to climb the last flight of steps. Needing a Stomach feeding tube for 17+ is a big deal. I worked hard for 5 years to get to a point where I can maintain my weight without the need of a G-tube and you telling me how tiny I am minimizes all my work and effort. It just reminds me how unhealthy I am thanks to my Cystic Fibrosis. 

" Must be nice to eat anything you want"---- Correction, I can NOT eat everything I want. I actually have trouble with fast food, anything fried or greasy, I can't drink soda pop or any caffeine anymore (not too mention alcohol). Good bye coffee and non decaf tea. PLUS, I have to eat so much there are days I have to force feed myself. If I eat too little I don't get enough calories, so I push myself, which sometimes means I overeat. My stomach feels full and bloats super easy. I also, don't get to eat a lot of food I love. For example, Pickles, Grapefruit, Salad, fresh fruit some of my favorite foods! None of these things have enough calories. I have to consume at least 3,500 calories a day to maintain my weight, so I can't waste stomach space most days on the low calories foods I love. I force myself to drink 2-3 ensures a day in between my meals too. Try being in all you can eat contest and pushing yourself to win. Then you will get a glimpse of what I feel like.

When I say I need to gain weight and hear "huh, Give you some of mine" or
"Wish I could keep my weight down like you"--- I understand some people struggle to keep weight off, but by saying this, you obviously don't realize how Cystic Fibrosis has impacted my life or why I'm underweight. Saying " I WISH I could help and give you some of my weight, is different. That is showing you understand my struggle and want to help. But usually I hear "huh, Give you some of mine" - this is saying your extra weight is a hassle and you'd be glad to get rid of it. In a way it says your extra weight is more of a struggle than mine and I should realize my luck. What luck??? I struggle to keep my energy up enough to do daily chores around the house, not to mention keep up with my job as a Realtor, add on the fact I need to work out and push my lungs with exercise every single day (which makes it even harder to keep weight on) to try to keep my lung function at 50% as long as I can. 

"You're so tiny and childlike"
"You could be in high school still"
"Wow you're thirty, you look 16"
Always hearing I'm cute or adorable, never hearing I'm beautiful or sexy.---  I can group these 4 together, as they all address similar points. I don't feel like people take me as serious, because I'm tiny and therefore apparently"cute." Think about it, if I was 6ft tall and weighed more would you still pick me up when you hug me or swing me around? Would you still like to rest your arm on my head while standing next to me? Most people assume its good to look younger, because that is what society tells us to think. But, you thinking I don't want to look my age is disheartening to me. I was a Pre-/Post school age day care teacher and trying to take authority over 8 year olds larger than me was difficult. I have worked so hard to reach this age and I want people to recognize me as an adult. Friends and Family, please say out loud really quickly words to describe me. Cute, Tiny, Small, Adorable? Any of those come up? 

Not to mention being referred to as cute, skinny, tiny, young looking plays a big role on how I view my body. I struggled a lot through high school and college with being proud of how I looked. When I first got my feeding tube in 7th grade and was gaining weight, I loved the energy it gave me. But I felt uncomfortable not being as skinny. Hearing how skinny I was all my life, started to be part of my identity. No longer being the tiniest scared me. Did I lose that part of me? Was I not as cute? Then when people started to add that they could see the weight gain & I looked healthier with a bit of "chub in my cheeks" I started to freak out. Chub in my cheeks?!?! I was always the skinniest one. It's all I felt I had. I wasn't the strongest, fastest, smartest, most athletic, I was just the skinniest, the tiniest, the small one with CF.  In high school, I was super healthy and saw how the extra few pounds (110) helped me. But, I fought myself a lot to gain weight in college.  I always knew I needed to gain weight and be healthy, so I honestly did and I tried. I didn't let my fears of body image really affect me until my last year in college. I had one boyfriend that would make lilttle comments, during that one year. And I failed to try and gain weight, letting it drop to my all time lowest under 90 lbs. With help of my roommate Stacey, I broke up with him and worked through the issues, and got my weight back to 100s.

Being the "skinny one" and identifying as it was just part of my problem. Another huge issue, I still struggle with today is the feeling of not being "beautiful or sexy." The thankful part is I have the most supportive and awesome husband. I actually told him I could not date him for a few months (after he first asked me out), since my last relationship before him was 2 years prior and the unhealthy one I spoke about. I told him how while dating I put meds on the back-burner and struggle with my weight. We had a long open talk. He proved to me he would put my health first in our relationship and eventually won my heart and hand in marriage. 

While, I still don't usually think of myself as sexy or beautiful and still struggle with always feeling young & cute. I'm working on it. But this is one BIG reality to being so tiny (for all CF patients & non- CF patients alike). As a 31 year old women, or a teenage going to prom, or a women on her wedding day.... believe me we don't want to be "cute" anymore. Breaking down those preconceived ideas is hard after hearing the same word "adorable & cute" to describe me from age 2-31 years old.  In fact, here is what I really think I look like: a frog. Most days my stomach is bloated or upset, so it sticks out. Almost where I can look a little pregnant sometimes. I have tiny limbs, no muscles, and CF patients can have clubbed fingers (from lack of oxygen). It's hard when I look in the mirror and see a frog...

Adding to the fact as that I have so many scars all over my stomach from previous surgeries, as well as a mediport in my right breast. I also had a feeding tube for 17+ years. I haven't been embarrassed of my scars, mediport, or feeding tube. I'm not afraid to show people and never hide them, since they all have saved my life. I'm blessed and proud to be alive and those scars show struggles and obstacles I have overcome. But adding all those scars along with my weight and body image struggle, it just adds to list of reasons why I'm not "sexy or beautiful."  

Right now I am too low in weight (101, when I tend to stay around 105-108) and that was due to illness & hospitalization in April, along with work picking up more. But I'm getting it back pound by pound, thanks to my fitbit. And here are some current pics ( Post Below-I just took them.). 

Please understand the struggle we go through to gain weight, keep our energy up, and stay healthy. Don't minimize it. Understand the impact of words. 

I wrote this post, because I think this is an issue a lot of people have when they have a similar situation to me.  Kudos to my friend for posting about that picture on Facebook. I just want to open everyone's eyes to the fact body shaming & body issues are so unique depending on the person and don't always pertain to the same case. Please keep this in mind.

And to all those struggling with similar or their own weight/body images feel beautiful in your body!!!

Stay tuned to hear about some AMAZING NEWS next week & all about next weekends vacation, and CF Walk on June 25th!!!!

Tuesday, June 7, 2016

Golf for a Cure & Other Fundraisers

Fundraisers & More:

Yesterday was a great day! Andrew and I attended the Suzanna Lee Memorial Silver Cup Challenge, Golf Outing for the Cystic Fibrosis Foundation. It is one of the Peoria CFF Chapter's yearly events and this year was the Golf Outing's 15th year!

Everyone arrives around 11am for the grilled outdoor lunch before Tee time starts at noon. The Golfers are out for 4 hours golfing, some of the holes have competitions at them (like longest putt). During the golfing volunteers help set up the banquet dinner hall. There are over 100 silent auctions, chocolate fountain, hors d'oeuvres, followed by the dinner served between 5:30-6:30pm.

Andrew loved golfing and I enjoyed helping set up the silent auctions. I was the speaker this year and was very honored to the speaking about my life with Cystic Fibrosis. The Golf Outing was started 15 years ago in memory of Suzanna Lee (a girl who went to my CF Clinic and was from Peoria). Her parents host it every year and it raises a lot of the money for the CF Foundation!

I've uploaded my speech to YouTube here and I will be posting the Golf Outing Album in the next few days on my CF Facebook Awareness Page, make sure to check it out!

Now that the Golf Outing is over, it is time for me to hardcore focus on the Princeton CF Walk! We still need a few more teams to sign up. We lost 2 big teams from last year ( do to moving, etc). I'm excited for their new chapters in their lives, but we could use some help in reaching our Goal Amount! We have brought in around $5,000 so far online, but at this time last year we had raised over $10,000. We raised $23,000 last year and this year we are projected to only raise around $8,000-$10,000 this year!

Some ways you can help is donate, share, or join us walking and form your own team! Also, hosting a secondary supplemental fundraiser is very helpful. My uncles host a dessert party every year. They make some dessert, get some wine, and ask friends to bring checks made to the CF Foundation. They raised $375 in the past! My Aunt makes homemade Jam and sells it in her town & through me on Facebook, she raised almost $300 last year.  Here is the link to her Facebook event she made for it this year!

Also, contests work: For example: I will shave my beard off for $1,000! Really anything could be made into a fundraiser, so please consider doing one and help us out! I have some great ideas for next year to change it up & raise more, but we need to succeed this year in order for us to remain a CF official Great Strides Walk site!

Here is the online link to the CF Princeton Walk registration & info page:

If you can help or want to start a team in Princeton please let me know! I can help you :-)

Thank you!!!!

Monday, May 30, 2016

Big Decisions

Change is Always Difficult:

Lots has been happening lately and some big decisions need to be made soon.  But first I will share some great news! Last week we hosted a fundraiser at a local restaurant, where we were guest-servers for the night. We had a door prize and a few raffles, and raised an amazing $2,120 that night! Thank you to everyone that helped us. Our servers, volunteers, customers, and the Right Spice for letting us serve there! The total for the event goes to the Princeton Great Strides Walk and all goes to the CF Foundation.

After the night, we all sat down and enjoyed a nice dinner to relax and celebrate! It was a lot of fun and I can't wait to do it again next year! I'm hoping to do one more fundrasier in the fall to supplement the Princeton Walk. A lot people don't realize we can fundraise all year round, that the site is up until the end of December.

Also, I have two contracts in escrow right now, but the BIG thing on my mind is: CF Clinic. I'm mainly nervous, because I'm going to a new clinic. Well, not completely new. I grew up going to this Clinic until I has 26 years old. I loved my clinic and loved my CF Pediatrician.  Doctor C was always there for me. But, when we lived up in Chicago area it was really convenient to switch to Doc B. Especially since Doc C was retired.  There are pros to both centers. Doc B in Chicago is so on top of research and creative ways to treat me. Which is needed, since I'm allergic to so many antibiotics, etc. But, I realized after the month of April, we just couldn't do it anymore.

The month of April I was in the hospital for 8 days and at home on IVs for another 8. Driving 4 hours one way to the Doctors every other month was hard enough. But when you are sick, it's hard driving yourself 4 hour to the doctor's. Otherwise Andrew has to take off work. Plus we pack my meds and food, not to mention the cost for gas. My hospital is 3.5 hours from our house too. So when I was admitted Andrew only got to spend one night with me there and he didn't get to see me the other 6 days. My sister came up for a night and my parents drove up to take me home. It was just soooo far from everyone. But, the icing on the cake was when my mediport wasn't working and if they couldn't fix it I would of needed surgery to replace it. I was sick enough for them to cancel an eye surgery that week and admit me, so I did not want to be alone if I needed surgery. If I was going to the CF center in the town where we live now, my hospital is 20 minutes from our house and less than an hour from most of my family.

It made me realize that too many crazy things happen with CF and that I cannot afford to have all my family so far away when I'm in the hospital. Andrew and I talked about it a long time, but ultimately he said it was my choice. While I do think Doc B is the bomb, I just can't keep up with the distance, too much happens. Why drive 8 hours and sit in a clinic for 2, when there is a great clinic and research center 20 minutes from our house? The doctors at our local clinic are new and I have heard great things. Plus, the rest of the staff is all the same and I LOVED  each and every one of them. In fact, I really missed them and cried when I left them. I'm excited to see them all again. And while, I'm excited to have my CF doctor, hospital, and research center all in the town I live, I'm still beyond nervous.  I really loved it at Doc B's too, but I can't keep up with it.

We moved to Central Illinois and away from Chicago in August, but so far I had been lucky. This last hospital stay made me realize how far apart from Andrew I would be every time I'm sick. But the thing that really drives this decision, is thinking about how it impacts my future kids. Andrew and I both want a family, and do I want my kids growing up driving all the way to chicago for Doctor's all the time, or being 4 hours away from their mom for weeks at a time while I'm in the hospital. No, I don't.  If I was hospitalized in Peoria, my kids could just come up every evening and see me.

I'm not sure how tomorrow will go and I'm very nervous. It's been 5 years since I have been at the local CF Clinic. It's a huge decision to switch care centers and doctors, so I'm hoping I make the right decision.

I'm also nervous to figure out what is going on with my bottom right rib. It has hurt for the last 3 weeks. The rib feels bruised, it hurts when I touch it or cough. It's not my lungs, It doesn't hurt when I breathe in deep and I'm not sick. So, I'm thinking the bottom rib must be bruised or something. Hoping to get some answers about that... Keep you all posted tomorrow. Fingers the transition goes smoothly and I have made the right decision.