CF Parents

I was born to the best the most caring and loving people. I couldn't have asked for better parents.

♥Note they "went in half's on a baby" at least that's what I have been told my whole life. If not I wouldn't have happened!

However when making this plan I don't think I was what they had in mind. This tiny little flaw in life, screaming and crying for 26 years! I know my parents were expecting and wanted a healthy baby. What father doesn't listen to his new born babies first cry and count their fingers and toes? Making sure they were born as all would hope. Well our genes made a hiccup and I was born with a "death sentence" known as Cystic Fibrosis.

My mom and dad were unable to see me for the first few months after I was born because the hospital kept me. All my mom had (a month after I was born) was a small mothers day card with my photo in it. I hate that photo so much it makes me want to scream.

♥ I did post it already as a photo on another blog. It is just heartbreaking especially for a mother lost and in the dark about the health of her newborn baby girl.

My dad knew what CF was and knew I could live a fulfilled life as he grew up with my cousins who all had CF. He just wasn't in the "know" as to what all it had to mean. The things that would have to happen the changes needed to be made as a family to keep me here.

I feel like I held my parents back at times, making it to were they could not make that deal for half a baby again. Luckily my parents had children from prior marriages. So we had a full family.  My sister being 10 years older than me and my brother being 8 years older than me. I was the baby and it was almost as if I were the only child. By the time I was 8 my sister was 18 and had babies of her own. While my brother was a typical boy and pretty much was never home, then he moved out.

I have such an amazing spiritual connection with my parents. They took care of me, yelled at me, forced me to take meds, and were always understanding and aware of what I was doing.

♥I used to HATE doing anything in our town when I was younger my dad would get calls, "Hey I've got eyes on Sandi she's walking on Morgantown Ave with a blonde girl." Oh how I love that now. Admit it fellas I know who still does it, only now you can have eyes on me via internet and in person.

My mother had a rough and rocky road when I was born, up until I was about 4 or 5 years old I believe. She fought with hospitals, nurses, and doctors. Who were so blind to CF in 1987 in Florida. That they said I was malnourished and my mother was starving me. She got arrested for taking me AMA(against medical advice) from a hospital in Florida because they were using me as a guinea pig! Luckily it was resolved quickly, I was placed in foster care until it was straighten out. The doctors finally realized I was just a normal CFer and was failing to thrive, not absorbing, and not eating because I was a fussy hurt baby.

I know there were times my parents were overwhelmed by my health and all of the complications including medication and treatments. They never let me see that or let me know how they were bothered. I never saw anything on their faces but love, support, care, and hope when they looked at me the entire time I was growing up. 

♥They are stronger than I ever will be. Having doctors treat me as they did in my first few months I was alive. Is enough to make someone go insane!

Growing up they knew there would be complications they knew it would be hard they knew they had a lot to blow in their faces as I got older and my health would get worse. My parents never ever told me "No". I know that was part because of them never knowing how long I had to be with them and part because they wanted to see how far I could push myself and make myself stronger. This was something that I know my siblings didn't care for. I hate that aspect because I understand both sides.

♥My mom even let me try out for the high school track team. Knowing it was going to be a very hard sport to attempt for me to do. I did it for a full 2 days then sadly was done with that. My parents would smile and simply say "you tried".

I was able to go to them for anything. As a Cystic we still have questions like any normal kid. Questions about sex, drugs, smoking, life, and how to's. I would ask hey what is "insert drug here" "I need birth control" and they would tell me and then advice me not to do anything drug related.

♥Luckily my Cf scared the bejesus out of me to try any type of hardcore scary drugs. I was always afraid of what my meds would do mixing with crazy drugs. I just knew what friends were doing and would want to know what it was. They would tell me, and say "its not a good idea baby but if you do and something happens we are a call away." If I was 3 sheets to the wind they would come get me no matter what time it was.

So I guess what I am saying is, embrace your Cystic's let them try anything they want and figure it out for themselves. I have noticed parents now are so worried about their Cystic's and seem to put them in a bubble.  Don't do that! I love that my parents treated me like a normal kid. I got dirty, played outside, sat at bonfires, went fishing, camping, road trips, raced dirt bikes, cheered, participated in everything I could. They didn't start panicking when I coughed, they could tell the bad ones from the good. Teaching me to know my limits. During it all I had two of the best and amazing fans, parents, and now best friends always there rooting me on!!

There is nothing wrong with you're Cystic's playing sports, getting dirty, going to sleepovers, and school trips. Myself and older Cystic's did the same things, we were all out playing being rough and tumble kids. 

♥We must have been doing something correctly because there are a lot CF adults and we didn't need to worry so much about germs and playing and having a semi normal childhood. 

★Hell when I started working at The Playboy Mansion my parents were supporting me the whole time!! Along with working at Hooters, that was actually a joke between me and my father and ended up being an amazing and one of my favorite jobs. With my dad saying they wouldn't hire me because I didn't have the "Hooters" and I got hired before our meals were on the table.

Needless to say, I was not the baby they imagined but I am the baby that showed them miracles, smiles, perseverance, and motivation can make ANYTHING possible! All of these attributes about me come from the both of them!!

♥★♡☆
I have amazing parents!!
   Sandi
   For more info, tips, and my journey like me on Facebook

My daddy and me!!! My hero, my daddy, and my go to for everything!!! I love you so much daddy! Time to tell these diseases to kiss our ass!

My beautiful mommy!! You've always been my best friend even when you didn't know it! You are my rock and one hell of a strong woman!

Food & CF

Being a Cystic is seriously a full time job. If you're not thinking about one thing you need to be on your toes thinking about another. Food is one of those things you tend to not think about and just out of habit eat what you are given.

CFers need a high calorie, high fat diet! I have explained the digestive tract with Cystic Fibrosis in a previous blog. Maintaining a normal BMI (Body Mass Index)  is extremely hard for CFers to do! We are at a higher risk of constipation, poor absorption, diabetes, liver and kidney issues, and inflammatory issues in our lungs. So when we grab a snack we should be thinking of all of those issues. Yet, lets face it, no one can just look at something and know "that is going to block me up" or the time a group of friends or family makes you dinner or even going out to eat, needing to think "what can I eat an not be rude?" "Is there a menu item that will give me greasy stools?" These are not atypical questions you think about, at least I don't.  My thoughts normally run along the lines of "FOOD!"

So there are four major things we as Cystic's need to remember; salt, constipation, easy to digest, and fatty foods. The tricky part is all of these can hinder the other. What do I mean? Cheese is a great source of calcium and will constipate at the same time. Everything is ok in moderation, and by that I mean one extra helping for a Cystic is staying "in moderation"!

• Iron is essential for carrying oxygen to the body. You can find iron in some cereals, meats, dried fruits, and dark green vegetables.
• Zinc is important for growth, healing, and staying healthy. You'll find zinc in meats, liver, eggs, and seafood.
• Calcium helps build strong bones. Milk, yogurt, and cheese.
• Salt. Cystic's lose a lot of salt in their sweat, especially during hot weather and when they exercise. A good way to replace this salt is by adding salt to food and eating salty snacks regularly. 

The issues with these foods is having them cause a blockage. When dealing with blockage issues and a Cystic it is a very sensitive issue. This will change and differ from patient to patient. All I can do is tell you my experiences and what I have done to avoid going under the knife again! Just a few foods that can cause a blockage yet are good for Cystic's at the same time. 

• Red Meat slows down the digestive process, however provides iron and zinc that we do need. 
• Potatoes no matter how much you love them are super stratchy and will slow down digestion.
• Cheese has been just a common blocker for a healthy person. When mixed with the extra mucus in our body, it just becomes a sticky mess. 
• Pasta will bind you up and you may not even realize it. If you are Italian like myself, and Sunday's are Pasta days or maybe you just love pasta! Go to the store and get the Fiber Plus Pasta's. The fiber will break down and is good for a Cystic and our digestion. 
• Bananas are a great source of potassium, however they are not easy to digest and will cause blockages if eaten too much.  
• Milk believe it or not is actually really bad for a CFers body because of the mucus mixing with it. However, milk provides a lot of things we need. Doctors will normally recommend milk, for bones and overall nutrients from milk. 
• Sugar is a no brainier however, lets face it, we all love sweets. This does become a big issue if you are diagnosed with CFRD (Cystic Fibrosis Related Diabetes)
• Caffeine will also drag you down on energy yes, it will boost your energy at first, but the effects after are lagging and it also will block up your system. 

So with all of these good yet not good for you foods what do you do? Simple, eat them in moderation you can eat anything unless you are allergic to it of course. Then make sure everyone around you knows what you are allergic to. 

I am allergic to dark soda the caramel in the soda's make my super sick to my stomach. So I have to make sure everyone knows I can't drink Pepsi or anything like that. Sprites and other clear sodas I am fine with. Trust me going out as a younger Cystic this allergy sucked. Especially when people would try to be nice and buy me drinks at a bar. I would constantly ask "What's in it?" 

★Tips for little ones. There are so many things that you can do to possibly help a little Cystic eat. 

• My mom used to say things like, that will make you prettier, make your hair shiny, your eyes brighter. Now of course that would only work with a little girl. Perhaps that is why I have so much confidence now because of the things I would eat only because they made something about my physical appearance "nicer." Pretty sure none of it was true, but it worked.

• Pretend to get a text or email informing you that you and your little Cystic have to keep the bad guys from attacking. Tell them its a villain that they are familiar with and if you don't eat all of the food they will not be strong enough to beat the bad guys. That they have to eat their food so the bad guys see how strong they are and won't want to mess with your house. 

• Pretend that they grow before your eyes as they eat. When they stop eating you see them getting smaller and smaller. So they need  to eat or they may disappear.  

Regardless of the method you use or the way you get your Cystic to eat. Make sure to make eating a fun situation. They do and will need to eat more than normal kids. If it is always a struggle and not a fun experience they will not want to eat. Make sure to make it as fun as you can. Use your imagination to its highest, and your Cystic's imagination. 

The main thing to remember while making sure to stay away from blockage surgeries is that for whatever you may eat. Look into it later if need be but always try to find the pros and cons of all of the food you consume. Like the ones I have listed they are both good and bad. Cystic Fibrosis is a very complex disease and honestly you can live to be 90 and you will still not have it all down. Everything changes and everyone is different. What your body responds to is different than what your sister or your friend with CF or even how I would respond to different foods. 

★Just always have laxatives and anti acids near you at all times! 

Eat Happily,

  Sandi

For more information, facts, tips, and my journey with CF please like my  Facebook

Modeling in LA 2010

Dating & CF

Cystic Fibrosis may not affect the heart so much in a medical way, but it will affect it in a romantic way. It isn't easy to take on someone with "baggage" like myself, someone that's been blessed with this disease that may be a silent disease but you can never really "cover" it up. Growing up trying to have a "normal" dating life is difficult. Although lets face it, no one has a "normal relationship" now a days. However, it is very hard for anyone to give their entire hearts to someone knowing what awaits them either the Cystic or the partner.

♥There are 3 different types of relationships you will find in your life. Or maybe just that I found in mine. There is no one relationship that is the same as another. We are all different and go about it in different ways. All I can do is share what I feel was my way of finding "the one" while living with Cystic Fibrosis.

First one- The runner relationship! My "runner" let's say we call him, Pedroia. We were friends for a few years and would go out from time to time. He knew I was sick and it seemed to not be an issue. Then that dreaded day while I was covered in orange jello (long story) from head to toe and I knew what I needed to do. First get the umpa lumpa stained color out of my SKIN (priorities lol) then straight to the hospital. As I sat in the hospital bed, staring into his eyes, I saw the confusion in them, he was at a loss and I couldn't help him. You could tell by the look in his eyes, he wanted to try, but he just didn't know how. I could see the thoughts running through his mind, "I just got her- I don't want to lose her- it won't even be my fault. I can't even help or change it". We tried to make it work, but he ended up being my best friend, We had our final night out together on the beach. We walked alone, no one around us for miles, walking down the beach at sunset hand in hand. We sang every Beatles song we knew horribly mind you! We just sang and danced alone in the moonlight. The sand on our feet, standing nose to nose, waves crashing behind us knowing that it was over. Lets face it, this movie was worthy, but sadly the medical discomfort and panic between us would not have worked with him and I. He wasn't running mind you. I was "The Runner", so don't get that part confused. Stage "RUN" is a panicky feeling you get when you know it's time to ride off into the sunset alone. Leaving your best friend to find his true love, the one that is meant for him. Sadly, that comic strip where he finally meets his true love, did not have me in it! 

Second one- The Protector relationship! My "Protector" say we call this one Wylde. He could not have walked into my life at a better time. I needed to get away, leave this horrible town, getting the hell out of dodge was what I needed. That's where he came barreling in. We rushed into everything like fools. Because of him, however I was able to accomplish so much! I had the most beautiful Cinderella Wedding anyone could ask for! We released butterflies and bubbles as we walked out of the church, "Man & Wife". I was married to someone else's Prince Charming and not my own sadly we both knew in a way. He did some things that I disagreed with and being a Cystic, during sexual times I was just not enough for him! While in the hospital, he would be too attentive wanting more and more details about personal things. To me there is a line between worry and creepy and he tiptoed on it for sure. So the "protector"stage had to come out of me and put a stop to it all. Knowing this was the wrong marriage, wrong life, and wrong situation. Protecting my heart and getting away was the only option I had. Sadly, he and I did not have a love like Johnny and June! 

♥ and then you have the third relationship.....

The One relationship! This one honestly was a no brainier! We shall call him Tyson, as that is his name (the other two, of course, are not!) We met in a bar, talk about the BEST place for a Cystic to be right. He was then my "pretend" boyfriend because my actual boyfriend at the time, Pedroia. Was unable to make it to the bar with me because he had classes the next morning. So Tyson helped me with a creeper that followed me from work to the bar! We hit it off as soon as his eyes hit mine. Yet we did not go out for many years later. Things changed for the both of us and we drifted apart. We did keep in contact with each other over the years and remaining friends. Through a marriage and a divorce on my part and the tragedy of losing his lifelong best friend, changing the both of us drastically. Running into him again, at that chapter in both of our lives was magic. He knows CF inside and out and takes care of me like I needed. He doesn't want to know too much, although he knows everything because I feel comfortable telling him. We were like magnets just being pulled together from the moment we met. Luckily we are together after years of chasing one another. Our story is the one you read about in books. The one you think "Yeah, that will never happen!!" If you know us and know our story, we are luckily each others Allie and Noah 

Basically, as a Cystic, you need to "run", "protect", and be "the one" in your life to save your "heart". Once you give your heart away you become vulnerable, that applies to everyone. Your health will sadly scare people away, and your heart will draw them in. Dating is a risky business when you are terminal. It's hard for someone to be 100% ok with everything, knowing what you are going to have to go through. Even some things Tyson isn't ready for but he stands strong, holds my hand, and kisses my forehead when I know he is stressing and staying strong for me. He gets flustered hell we all do. It was his chemistry that was needed in my life. He keeps me grounded instead of myself running, protecting, or hiding. He makes it to where I don't need to do that any more!! That's what matters when you are looking for "the one"! Look for someone you feel comfortable with medically and romantically, you will know and I did years ago!

★♡♥☆

I will say this, I am a VERY lucky woman being 26 years old and having a fairy tale happen not once but three times in a row! I love all three men a little differently from one another. I will always have the memories in my heart no matter what. Some women are lucky to find love once in their lives. I was lucky enough to find it three times. Differently of course in each relationship, but they were all there! If you are lucky enough to become the runner, protector, and the one, be happy! Because I know I would not be where I am and who I am if it wasn't for those three amazing men! We are all still able to remain friends! Seeing as we were all friends before our relationships ever began and the splits were not too bad to hate each other like most breakups or divorces. I was twice lucky and am now lucky for being IN LOVE. The head of heels, marry me now, supportive, raw, real kind of love! 

★FYI Tyson and I will be officially married July 19th, 2014 I am so excited, but at the same time we are practically married. That piece of paper will not change my feelings for him unless they grow stronger!! =) He is "The one", that I am so happy was at the bar that night!

Lucky in love
    Sandi
    For more information, facts, and my journey with CF, please like my Facebook

 Pedroia, I was sleeping and he drew me! He has such an amazing talent!!

Wylde- Marine Corps Dress Blues Marine Corps balloon tattoo!

My GORGEOUS engagement ring from Tyson! 

CF Meds & Nebs

"But you don't look sick"- ""Wow, you have CF you look so good"! Two statements that I hear often and quite frankly hate those words. I am not sure why, but they send chills up my back!

♥Yes I have Cystic Fibrosis! Why in the world would I say I did if I didn't?  Yes, I know people do that all the time and that is a completely different disease and another issue all together.

I may not look sick and that you are right on. Come into my home see me on my oxygen or watch me do a treatment. Listen to my hacking cough and see for yourself. To date I have taken anywhere from 31-60 pills roughly a day. It changes drastically depending on my health. At the moment I am "healthy" and luckily not on as many as I have been in the past. Still over 30 on an average day.

Let's break down a typical meds list of a Cystic. Now these will and do vary from pharmacy to pharmacy and Cystic to Cystic.

Daily:

• Anti-Acids could be 2 different types of pills daily
• Oral Antibiotics anywhere from 3-5 different types of antibiotics regularly for maintenance.
• Anti-Inflammatory meds 1-4 pills for lungs once daily, sometimes twice a day depending on the Cystic.
• Enzyme anywhere from 3 to 21 capsules per meal (sometimes more) depending on appetite.
• Inhalers or Nasal sprays 2 to 3 of them
• Once daily, sometimes twice daily
• Nebulized medications anywhere from 1-9 different types of medications 2-4 times daily. These take a lot of time during the day.
• Vitamins at least 2 multi-vitamins plus 3 extra vitamin tablets once daily sometimes twice daily.

♡Diabetics (Cystic Fibrosis Related Diabetes) have extra meds on top of regular CF meds. Which is normally up to 3-8 medications daily, including insulin shots.

♥Transplant meds - include a variety of anti-rejection meds and anywhere from 1-7 different medications daily. After a transplant some of the "normal" CF meds are no longer needed.

Each Cystic is different and will be on different amounts and dosages. Not all medications listed are automatically on a CFers pill lineup. With all of those medications side effects and simply living with CF other meds are also prescribed.

Others (Specific things not ALL CFers take these):

• Stool Softeners-Are given for digestion issues. Anywhere from powders to pills at least 2 times daily.
• Antidepressants- There are anywhere from 1-3 different types of anti-depressants given for daily depression and dealing whiling living with CF.
• Pain Medication- Sometimes the pain we endure is more than anyone should take. We can be prescribed 1-4 different types of pain relievers in oral, locals, IV, or patch forms.
• Muscle Relaxers - Massive amounts of coughing can really be hard on the body and muscles. There are several ways of fixing this issue. Physical therapy and 1-3 oral medications 2-3 times daily.
• Birth Control - There are several types of birth control. Female Cystic's have a 50/50 chance of getting pregnant. 

★Reminder every Cystic is different.

Ok, back to the chit-chat. Not ALL Cystic's are in need of these meds and some have even more to add. So once you sit down and read it, hopefully it will help put things in perspective. I personally have to take medication from each category daily, minus the diabetic and transplant meds for now.

Also, depending on the Cystic there are over the counter meds that can be purchased. Such as sleep aids, vitamins, and nutritional supplements. That all varies on the CFer themselves. 

So please next time you hear someone telling you they have CF, or any terminal, incurable disease, just don't say "But you don't look sick!" Believe me my medicine drawer, medical tests, medical levels, medical chart, and my X-Rays all look like I am indeed sick! You (Joe Schmo) just aren't privy to all of that.

★Yes, I am a "pill head" and if I wasn't I'd be dead! So there is the breakdown of all of the medication categories we have on a daily basis. Sounds crazy, but it's my life! 

Poppin' Pills for CF,
  Sandi

   For more info, tips, and my journey like me on  Facebook

Nightlife & CF

This issue has always been an irritating one to me. I would go to parties or socials when I was in college. Yet the same questions would haunt me.

"Can you drink?" "Do you smoke weed?" "You don't drink, do you?" "Do you get "insert pill name here"? The questions were always so stupid and irritating.  Acting as if I should be in a bubble or that I was ignoring my health.  

Why people would start assuming I was unable to drink is beyond me. Yet it always seemed to bother me. Drinking with CF, mind you I want to say responsible legal drinking! Is not forbidden we can do just about anything anyone else does just with obstacles. Do I smoke, NO, I have run a crossed a few Cystic's that do, however, in the end that is their choice. Same thing with pot or anything else. I would not advise anything "recreational" at all for a Cystic as it could really mess with your health and the reaction mixed with meds could be terrible. A long time ago, I was 16ish my doctor told me if I did smoke pot the medical aspect would help my lungs right now but would have horrible side effects later. So needless to say I did try it once (no reason to not be honest, I can't help others if not giving the full story and the truth behind my experiences) The next day I coughed so bad and non stop for hours it was terrible. I have never even had the urge or want to attempt it again. I know a lot of Cystic's who lived through the 60's and 70's and were the "wild child". Life is what it is regardless of health issues, temptations and peer pressure will always be there.

Yes, we can party, go out, drink (if you want to) and have a good time. It is up to each of us what we do with our bodies just as it is a healthy person! However, some CFers have a trick up their sleeve if you have severe digestion and absorption problems, like myself. Drinking alcohol when you have problems absorbing anything, you can drink like a tank. Although all stories and situations are different, mind you.

♥In college, I used to bet guys I could drink them under the table, big college meat heads mind you. I would always win, shot for shot and I was never even buzzed. That gets old, though mainly because you're the only one who can drink for 2 hours and not be falling down drunk. My drinking days are far behind me now. However, that is a personal choice not a medical one.

★I would advise to be cautious, know your limits and do not just try it!

Being able to go to bars was a big question I used to get all the time. Friends, family, and sorority sisters would worry because all of the bars back then were, smoker friendly. So going to a bar meant going into a room filled with smoke. I found it easier and better for me not to do a treatment until I got home. If I would do one before going out it would open my lungs and allow more second hand smoke to get into my lungs. So by doing one when I got home it would get a lot of the gunk up and out. Of course I was putting myself in harms way and knew this. However, my health will never stand in the way of me doing what I wanted to do. I just needed to figure out ways of making it work to not get sick. 

So don't think just because you have CF you have to lead a hermits lifestyle.  Especially those of you of legal age 18-21 years old. Just think it through logically, have a plan before going, be smart about it, and know your needs and how they may affect your choices as well. 

Living Life to The Fullest 

   Sandi

    For more info, tips, and my journey with CF, please like me on Facebook

My sorority sisters and I at a bar, drinking many years ago! I am in the Hooters shirt! :)

Always Smile!

Having Cystic Fibrosis plays a little, ok a lot with your mental health well being  as well as everything else. When you are the only kid with CF for city's or states, it tends to be very upsetting. These feelings will cling to you like a St. Barnard. The only way I have been able to get through these feelings is by following what I guess would be my motto, Always Smile!

No matter when I am feeling low or depressed I smile. If it's a real smile or a fake smile it doesn't really tend to matter. Smiling for me triggers a memory it could be something old, so random, and out of the blue or something that just happened yesterday. Yet, it still has its way of always making me smile or laugh about whatever that memory may be. Trust me, I know its hard to just get the thoughts of "why me" "I'm all alone" "No on understands" and so on out of your mind. The idea's that you're alone and no one around you will ever understand what you are going through will stay there as long as you let them. If you don't try to talk to others, a REAL friend, parents, doctors or even venture online to other Cystic's.

*The internet has been such a great place to come and gather with other Cystic's, relate, ask questions, and learn more about CF. You know that there are other people that are feeling the same way. You may just never get to actually meet them.

All anyone in your family or your friends can say is "I am sorry" or "I know how you feel". Um, no! No you don't and you never will! I hate when people hear me say something about my mental stability and then try to comfort me by relating and "know where I am coming from".

CF is the ONLY disease that pretty much attacks every single part of your body. Your lungs, pancreas, kidneys, digestive system, reproductive system, enzyme, hormones, blood sugar, heart rate, oxygen level, vitamin  levels, sinus cavities, and our fingers and toes for crying out loud. It affects our growth, teeth, size, weight, height, sweat, and smell. There is not a thing that isn't affected by CF. Heart, muscles, and mental health are just splashing backs from everything else, so they are also included in the whole system.

When you have one thing going on, everything else seems to want to back it up and jump on in. This disease doesn't work like most, you don't gradually get better or worse, or find a cure. You are a roller coaster of health, its up and down, back and forth, twists and turns, and just when you think it's over, there is a tunnel you have to go through to get to the finish line. That is actually an illusion because we can never fully be cured at this moment in medical science. Once you think you know what's going on and how your body will react to life, it has changed on you just for the fun of it. We are constant puzzles, doctors cannot seem to find the right pieces to put together and I most of the time they even just take educated guesses.

NOW lets add to it the personal life, family, love, and friends. Because everything going on to a Cystic medically isn't enough. You have to deal with this crazy world and its ups and downs twists and turns. It is almost like a huge slap in the face, knowing there is nothing you can do to change it.

People are going to come in and out of your life just the same if you're sick or not. Those same people are going to want to hurt and help you're weather your sick or not. It's the ones that stay with you and help you through.

The ones that never utter "I understand" or "I can relate" it's the ones that just take a step back, breathe, and listen to you, give you a hug, and sit in silence with you because there is nothing any of us can do, but SMILE. Plus in the end smiling is what looks best on everyone, anyone can rock a smile. Tears are never pretty and they just make your mascara run or you face puffy and red.

So lets face it, shit happens in this life of a Cystic and it happens all at once. Never stopping so you must get a grip on it now, before your mental health takes control. If you keep a smile on your face and remember something happy from your life you should be ok in this crazy messed up mixed up world. Never be afraid to reach out for help.

I do want to mention, people with Cystic Fibrosis are the strongest people in the world. We are amazing, not to toot my own horn, but I mean toot toot. Each of you can look at life, see what you've gone through, grab your horn and play it as loud as you can. We go through hell and back to make sure we stay here and not there!!

ALWAYS SMILE,
   Sandi
   Facebook

5 Facts you may not know about CF

Things people tend to be wrong about when thinking about Cystic Fibrosis.

1. Cystic's are NOT contagious! Some people are afraid they will catch the disease if they have contact with a sick CF patient, but it is impossible for a Cystic to give the disease to others. Cystic fibrosis is a genetic disorder that is inherited from both parents. However the fun twist about it is that we can be contagious to each other. Cystics carry different CF bugs that can be passed on from one CFer to another. Distance is always recommended for CF patients.

2. Patients with cystic fibrosis do live into adulthood. 50 years ago, Cystic's were labeled as an orphan disease and rarely lived past 4 years old. But today, depending on the severity of their disease, most patients live at least into their 30's and even into their 70's. According to the CFF, age of survival averages at 37 years old.

3. A Cystic needs to have many courses of antibiotics. Regular regimens of antibiotics improve the quality of life in patients with each Cystic.

4. Cystic's should not follow a low-fat diet. About 90 percent of Cystic's does not produce enough pancreatic enzymes, which makes them unable to digest food properly and can lead to malnutrition. As a result, we are unable to absorb all of the fat that they eat. Studies show that individuals who eat a normal-fat diet are better nourished than those who follow a low-fat one.

5. The future is bright for ALL Cystic's and their families. Thanks to new treatments, meds, technology, and more specialized care, scientists are constantly working on new therapies and drugs that will continue to prolong life and possibly lead to a cure!

Breathe Easy and know the Facts!

    Sandi

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Do It Anyway!

My mom gave me a picture with a poem on it not too long ago. It had an old tree in the sky behind it. At first I focused on that tree. Strong, beautiful, whimsical, dancing in the wind! I ignored the words on the bottom at first I am not going to lie. It is always the physical appearances, we all look at first, and there is no denying that! Just seeing the photo as the beautiful, peaceful and lovely image as it was. I wanted to be that tree! However this is a reality not a fairy tale where I can magically become a tree with only have a few set backs or fear of being cut down. Lets face is Cystic Fibrosis seems to cut my branches a little bit every day anyway.

During everything going on in my hectic life for the last few months. I thought, what's the worst thing that could happen to a tree? Burnt, chopped down, branches falling off, animals mooching off of you for food or shelter? This is how things do work in the real world, you see people doing just that to each other, yet no one points it out they just continue to cut, burn, mooch, or use people. It seems more and more that I pay attention to the world around me I see people only doing things when it benefits them. I just do not understand at times. 

After a long 20 day hospitalization my kitten had broken the frame that this photo was in. So we set it aside until we can find the right frame for it! After taking in the entire photo and poem, such a beautiful photo or metaphor to my needs the perfect frame. I looked at it for a little while and started to wonder, if that tree can be that uplifting to me with it just being a tree, I see trees everyday. What would the words mean to me? So I picked this old photo up and dusted it off and this is what I read...

"People are often unreasonable, illogical and self centered; Forgive them anyway.

If you are kind, people may accuse you of selfish, ulterior motives; Be kind anyway.

If you are successful, you will win some false friends and some true enemies; Succeed anyway. If you are honest and frank, people may cheat you; Be honest and frank anyway.

What you spend years building, someone could destroy overnight; Build anyway.

If you find serenity and happiness, they may be jealous; Be happy anyway.

The good you do today, people will often forget tomorrow; Do good anyway.

Give the world the best you have, and it may never be enough; Give the world the best you've got anyway.

You see, in the final analysis, it is between you and your God;
It was never between you and them anyway."

Mother Teresa

Now why was I so focused on a tree instead of the words? I may never know they both together make a life changing statement to me! Something that is more powerful than words, something that makes the soul shine brighter!!!!

So no matter your troubles, no matter your battles or your personal information. Take these words and hold them close!!!!!! As my spectacular parents have been telling me my entire life, "Let it Go" Mind you, this needs to be said very fast, as if it were one word. Added with an Italian hand movement, to understand the meaning and the power of those three little words! Something that has never really sank in until now!!!  =) 

Do It Anyway!!!
   Sandi
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My Photo from my mommy, who knows me better than I know myself!! 

'65 Roses'

Just like the game, Mad Gab say "65 roses" over and over and eventually you will hear "Cystic Fibrosis" Now that I have programmed your brain to hear it, that is probably they first thing you will think of when or if you see or hear someone say, "Cystic Fibrosis".

In the 60's a woman who was working for the Cystic Fibrosis Foundation was making phone calls to businesses, organizations, and people. Her job was just that to make phone calls from home trying to raise money for CF research. One day while making phone calls one of her 3 boys, who all had CF. Told her he knew who she worked for and she was shocked. Her son did not know he even had a disease or what CF was, so she asked him who she was working for and he simply told her it was "65 Roses". She of course cried and emotions were everywhere, then agreed with him, that yes she worked for 65 roses.

In 19'65' oddly the CFF has had a trademark of '65 roses' and has been an easier way for Cystics to refer to their disease. Very few people have heard of this or they have but don't know the story behind it.

So there's my little educational cute blog for the day!

Always Smile,
   Sandi

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For the full story and names, please visit the CFF

^ These are the three little ones that came up with '65 Roses"

Ribbons of Hope 2014 Awareness Calendar

I know many people have read my blogs, it makes me so happy to know this and see this. Shamelessly I am going to plug my nonprofit publication during this one! I know I know two personal blogs in a row! What can you do with me right? Trust me it's worth it keep reading!

I decided that I was tired of seeing "pink" awareness ribbons everywhere all the time. Yes, it is October now which is Breast Cancer Awareness month. I know that breast cancer is a HUGE disease that has taken women to soon, is taking our breasts, and turning some women into stronger women than they knew they could be!! I am not taking from or complaining about that! I support all disease awareness and searches for cures! They are the same to me, each disease needs the same amount of attention.  None of them are any better or any worse off than other!

Knowing since I was very young that Cystic Fibrosis had a purple awareness ribbon. I would get so upset that I NEVER saw a purple ribbon, but always a pink one. All over the stores, tv, and billboards. That never made since to me and well it still doesn't.

I started looking into it and found that there are 100's of diseases and different ribbon colors representing diseases. I have never heard of, however they were terminal or life altering like Breast Cancer, but unlike cancers, these diseases I've found out about and did research for, didn't have a treatment or surgery that could possibly rid them of it. The diseases I came across were more like Cystic Fibrosis. There are medications and breathing treatments that can prolong the disease. No medications or surgeries to fix these horrible diseaaes. We have to have this all of our lives and thats what bothers me.

Why not have a yellow ribbon for endometriosis, a purple for fibromialgia, a gray ribbon for diabetes, a red and blue one for pulmonary fibrosis, an orange one for MS, or a green one for mental disease awareness? Why were these never plastered on a bag of chips? Lids of yogurts? Pop/soda cans and bottles? I decided to take it on by myself starting as small as I can with just myself and my fiancé.  We haven't really been able to see what a success we could be because of complications in my home town. I mentioned in the beginning of this blog. The ideas 

Spreading the word of our publication and what we are wanting to do will help to bring awareness to these diseases that seem to have be put on the back burner. These diseases put people and their families through hell. 

In my opinion you should not need to be affected by any disease to want to help, spread awareness, and just selflessly help when you can, only because you can.

This publication I am talking about is an awareness calendar for 2014 with 12 months and 11 inspiring trumpet stories. From men and women living through a life threatening disease such as myself with CF or the other 10 life altering or terminal diseases. I am still here and so are they making strides everyday. 

This calendar is to celebrate that. Celebrate life, health, success, and happines through chaos!

Update: These calendars are no longer for sell as they were for 2014. 

Awareness is the key for cures,
   Sandi

Scars

Scars can make you who you are or maybe you just have an "interesting" story behind your scars.

Well, when you're a young female with the dream of modeling. It doesn't matter what the story is. It doesn't matter how it looks. All that matters is that it's there.

Will Photoshop fix it? Can you pose at a different angle? What about jewelry or make up? My scar stopped me from being cast in a lot of modeling gigs, each time I would feel a hole in my heart that would take my breath away. Mainly because I felt like I had the right "look" confident that my "look" was better than some who would get cast in things. Yet my scar was holding me back at least in California. I've covered my scar for as long as I can remember. Making sure all photographers, fashion designers, and casting agents all knew about it and my concern of showing it off. I made sure it was always hidden one way or another.

My insecurity about my scar started when I was a tweenager. Of course at the swimming pool where people could easily see it and would be so rude. Starring, randomly coming up and asking, "Oh my God, what happened?" It got to the point that I started coming up with lies. The truth just seemed to bother me. So I made up ridiculous things, just to be a smart-ass to their blatant rudeness.

I would roll my eyes and then say I was stabbed or shot in a "gang flight!" Mind you I lived in Fairmont, WV and was a tiny little blonde about 12 years old. Or another good one was, "I was hit by a train." I have been always irritated and embarrassed about it until I came across someone who really was shot in Afghanistan. A US Marine, who selfishly put his life on the line. Who said and I quote. "No shit? Me too" pulled his shirt up and showed me his actual "battle wounds." That surprisingly looked just like one of my scars. I felt horrible telling him that I wasn't serious, that it was a medical reason. This was 11 years of telling these fake scar stories mixing them up and changing them a little here and there. I have not shown my stomach in a public forum since then. Fearing the judgment and having to go into the details. My scars are all uniquely reasoned, but most are all intestinal blockages. To people you've never met who have no clue about Cystic Fibrosis, this is a difficult and embarrassing conversation to have.

Well, today (October 12,2013), I did! I was so confident I was wearing it proudly. Until I caught a lady who couldn't even look into my eyes. She is just kept looking at my stomach, my scar(s), and my hernia's, never asking just judgment and discussed showing on her face. So I offered the real story, where she still just stared. Then walked away.

That horrible feeling came back. That rushed feeling of embarrassment and ugliness. I know, I know I put myself out there. I should have expected it. However, I was at a tattoo convention? I guess I figured I wouldn't be judged. Thinking all body modification wanted or not would be expected.

I love my scar(s) as my scar is several surgeries in one ever growing line down my stomach.  For the fact that it is the only way I am here, I am still breathing, smiling, teaching, growing, and simply here! I hate it because of the insecurity it gives me, the questions it brings, the rudeness, and the starring hurts! It cuts deep and there really isn't a way of showing it.

I'm always a happy uplifting person. I always see the positive side of things. Which is why I say I love my scar, however, I do not love showing it off. I guess there is nothing I can do about that, but just keep on keeping on.

My only happy note of this feeling in my heart, is to acknowledge we are all different. We see beauty in different ways and people are born to judge each other. My scar doesn't define me, I define my scar. Even if I don't want to show it off.

Scars are for life,
    Sandi

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This is my 4th stomach surgery lucky for me they use the same scar to go back through. However it still sucks, I also have 2 hernias at the moment!

Modeling photo and the photo magic that makes my scar disappear! 

Lung Strenghtening

Cystic Fibrosis affects each individual living with the disease differently! Some of us have it worse than others. The severity of CF depends on the gene mutations that each Cystic has.

Healthy lungs produce mucus, with intent to protect their air ways and make it easier for a healthy person to breathe.

But for a person with CF, the mucus is thicker and sticky it clog's up the lungs. Making a nice home for bacteria to easily grow and bacteria causing infections. Because of the mucus clogging a CFers air ways this lowers the Cystic's immune systems. Making it easier for someone with CF to contract different viruses and "made for CF only bugs" and infections. Leaving the lungs very scarred and multiple hospital stays.

Daily chest physical therapy (Chest PT) is needed at least 3 times daily. There are several ways of doing that. I personally prefer the old fashioned method of "beatings". Normally you will need to have someone help "beat your back" for you. As you can only do the sides and your front upper lung areas. In order to do this specific therapy to move the secretions (mucus) up and out of the lungs. You will need to cup your hands and literally smack the Cystic where their lungs are making a galloping sound. By doing this it will help get the junk up and out of a Cystic's lung.

There are several different lung strengthening devices and methods used to help a Cystic breathe by bringing the mucus up and out of air ways. 

These are the  4 methods I prefer(ed) to use. There are many new and different ones.

*First Method- That is the old fashioned method of making it easier to breathe. They have new medications and methods now that most of the younger Cystic's are using. These methods I am not 100% sure on. I like the way I do things. I feel like being "beat" on has always been the thing that has worked thus far, why change it now. As my father would say, "if it's not broke, don't fix it"

***And a CF trait is stubbornness!

However, there are many new devices, breathing tests, medications, and newer ways of doing Chest PT. Just keep in mind, I am a dinosaur as of now so I may not talk about the new ways and devices. Mainly because I am blind to them.

*Second Method- Growing up I had rescued inhalers that contained albuteral and still have them today. I have to carry it with me anywhere I go. I normally have one stashed in the car, every purse I own, my parents' house, and one in the kitchen. That was the 2nd method I still use today.

*Third Method- After my inhalers came the "Flutter" which is a small handheld device. I always thought it looked like an "Old mans pipe". It was plastic with a mouthpiece at one end, a cover with tiny ventilation holes, and a tiny steel ball into a cone on the inside. The Flutter helps airway clearance by, vibrating the air ways to loosen mucus, keeping the air ways open when breathing out, and forcing "mini-coughing sprees" to help bring out the junk in our lungs.

The flutter was always my favorite. Mainly because of the way it worked with the little ball. I lost that thing so many times. I no longer use a flutter I use the next method the acapella.

*Fourth Method - The acapella is also a small plastic device. I have always called it a "pickle" because that it what it looks like. This device uses a plug and magnet rather than the steel ball in the Flutter. It uses pressure and vibration to move mucus out of the lungs.

Every method works differently for different CFers. My advice to the moms and dads out there, so that chest PT isn't such a pain is to make it fun.

You can have a balloon blowing up a contest to see how many balloons they can blow up in 5 minutes.  Do a "whistle off" take two whistles and see who can blow it the loudest. Start singing songs, singing or yelling will help move mucus and break it up. Blow out candles, make a goal of 20 candles in 10 seconds. Deep breathing for fun, just go back and forth with each other on how big of a breath you can take and hold in. Take a paper towel roll for "bear calls" and send them out hunting for bear, in the process of strengthening their lungs they are exercising while searching for a "bear". Do your best at lung strengthening by making it a game.

As long as you keep working on your lungs. Trying to get the extra mucus out and make the lungs stronger on your own. You will fight having to wear oxygen for a lot longer. The healthier a Cystic's lung is the healthier a Cystic can be!

Breathing for Fun,
♥Sandi 

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Digestion & CF

Cystic Fibrosis got its name from the pancreas, not the lungs like most people would believe. The disease got its name after several deaths, in which the doctor was able to examine the pancreas. Naming it "fibrosis" refers to scarring that was evident in the pancreas.

Digestive problems play a major part of a CFers body. It also makes it that much more difficult to digest food, vitamins, fat, or any nutrients. Resulting in surgeries because of the mucus thag blocks the pancreas, reducing the production of insulin and preventing digestive enzymes. Problems with digestion in a Cystic, can lead to diarrhea, malnutrition, poor growth, weight loss, and blockages.

Blockages happen to Cystics all the time. Where the food going through the intestines are also covered in mucus. Making it very hard to maintain proper, stools and constipation. In turn getting a blockage, that will need surgery to correct it.

Another complication we encounter is with insulin levels and can cause a form of diabetes known as cystic fibrosis-related diabetes (CFRD).

***I like to say that I have somehow "beat" developing CFRD. I consume more sugary things in one day, it's scary. Of course this is most likely not true. Nor does it hold any medical merit. :)

Most Cystic's develop CFRD by the age of 30, this however is not always the case. Some Cystics develop CFRD at a younger age as well.

*** So think back to when you were in high school. Remeber that troubled class clown. He would make a spit wad, and shoot nasty wet pieces of paper onto people. Try taking a soaking wet paper towel (aka food) and then coat it in honey (aka mucus) Attempt to blow that paper towl out of a simple thick straw(milkshake worthy) it isn't going to work without a LOT of help. Which would be the reasons for the surgeries we sometimes have to have.

There are still ways of keeping digestion on track and different tricks. Taking enzyme, medications, treatments, extra vitamins, and so on! To keep us as healthy and as far away from more surgeries as possible!

Fiber is best,
   Sandi

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My CF Story!

★I have decided to form this blog part medical and part personal. Which means every other blog will be personal experiences living with CF. From yours truly me, Sandi Alvaro. The other will be medical tips, info, and insight. Yep, you guessed it, this one is a personal one★

When I was born, I was given an "expiration date", that I would not make it to be a year old. Spoken so casually, as if I were a gallon of milk.

I was delivered by a middle Eastern doctor in, Titusville, Florida on April 26th, 1987. As soon as I was born my daddy knew there was something awry. My tiny baby body was an odd purple hue, which of course terrified him. I was then flown to Orlando, Florida. My father racing underneath the helicopter to get there at the same time as myself,he was a nervous wreck. Not alone were my parents told I may not make it, the doctor actually told them, "not to get attached to me".

During the hectic panic and chaos in Orlando, my mom was back in Titusville bleeding out from what the doctor did to her during my delivery. What I have heard her refer to as, "he just butchered me and coerced me to sign liability paperwork, while repeating "you no sue". My father was on the verge of losing us both. Luckily her and I are fighters and that was the day that my mother and I, were spiritually connected and have been ever since.

After rushing me to the Orlando hospital and waiting for hours my dad was informed that I had neglected to pass my meconium (first poop). Which then lead to, a condition called, meconium ileus which simply is the thickness of mucus around your intestines. This is often the first sign of Cystic Fibrosis. Later on the diagnosis of the meconium ielus sealed my fate. My father had known what was about to be said. He knew it had to be CF. He thought about his 3 first cousins with CF, and just knew!

★Interesting fact- A symptom of both Hirschsprung's disease and Cystic Fibrosis is the failure to pass meconium.

That, ladies and gentlemen, is when I changed my parents life styles and outlook on the world.

Panicking about his "fiancé" (at the time my parents were not married.) My father was torn and confused as to what he needed to do. What could be done? How we were going to make it?

My father tried telling the doctors that CF ran in his family in first cousins. Back then they said it shouldn't be an issue. A few hours later, I was diagnosed with Cystic Fibrosis!

I feel I tell this story, hundreds of times. It's a good success story to tell. One that warrents the attention. To stop ignorance of the life span of a Cystic.

★My next "expiration" date, is whenever I say it is!

PS I have been here raising hell for 26 years and plan on 26 more years! The jackass doctor who gave me an, expiration date, can kiss it!!

Don't spoil, just smile,
  Sandi

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Gene Mutation, where it ALL begins!

Let's get down to the bare bones here! My name is Sandi, and I am living with a genetic terminal disease known as, Cystic Fibrosis!

Let's make it easy, with not too much medical jargon. I mean lets face it, unless you're in or around a medical environment who knows the correct medical terms?

It begins with a Cystic Fibrosis Transmembrane Conductance Regulator (CFTR). CFTR controls the protein function of chloride in and out of our cells, which is important for the salt and water balance in our lungs or pancreas. Changes in the CFTR gene can affect the structure of the CFTR. The most common CFTR mutation leads to the lack of amino acid at the "508" in our DNA structure. This is known as the Delta F508 CF Mutations.

In order to have CF, both parents must have one defected gene mutation, which will not affect them! Only having one gene defect will not create CF and people are able to lead healthy, normal lives, never knowing they carry the CF gene. We are comprised of half of each parents DNA, so we get both of the gene mutations, and today we have Cystic Fibrosis! 

Most common Cystics have the Delta F508 and most CFers carry double DF508. Meaning both gene from mother and father are DF508. Thanks to my fathers Italian heritage (lmao I love being Italian, and my father, bus I love picking on him too) I was blessed with one DF508 from my mother and a very RARE 2nd mutation from my father. Which is the L1077P.

I imagine it would be like saying, I know how to make chocolate chip cookies 10 ways, all with a few ingredient changes. With the outcome still being a chocolate chip cookie. However the process is different.

Thankfully, we have come a long way with medical technologies. They have blood tests now, unlike when I was born, 26 years ago! This tests can check and tell if you and your partner have the CF gene.

Please help limit the amount of babies born with this disease, GET THE TEST DONE! It is NOT included inthee typical blood/disease screening when you are pregnant, just ask your doctor to add it. So you are certain to check for the CF gene too! Even if you've never heard about it, and it does not run in your family! 

It's that simple, to know and lower the chances of more babies being born with CF! At the moment, we have new medications, tests, treatments, and technology, helping towards a cure. However, we are still very far from finding that cure!

Of course, every person's situation is different. Look around us, CF is sad, the most common genetically terminal, diseases in the US at the moment. Yet not many people know abou it!

So that's where I came in. I smile through the pain, the meds and the nebs. The scheduled treatments and hospitalizations, to help you! It may only be for CF education, inspiration, an ear to bend, or another Cystic to understand. No matter the circumstances, I will be here to answer, help, or educate anyone on Cystic Fibrosis!

Smiling is in my genes,
    Sandi
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