The CF "Talk"

So you think talking about sex to a teenager is hard? Telling your child there is something that can not be taken away and will have an effect on everything they do is difficult to figure out. The questions go through your head about, "What age is appropriate?"  "What should I say?"  "How should I say it?" "What tone should I take?" All of these questions are valid and each Cystic is different and so is your relationship with your child. In the end however that conversation has to be had.

When it comes to the age to introduce your child to this disease, is solely up to you as parents. There needs to be a level of understanding that is exchanged between you and them. Understanding a lifelong disease is going to be hard for them at first. Keep in mind that they know who the doctor is, they have seen the hospital and the comprehend the situation. They are smarter than you give them credit for and are a lot more understanding than you may think at first.

I honestly do not remember having the "talk" with my parents I just do not remember not ever knowing what was going on. I knew I had CF and I knew it was able to kill me. I think the difference or what made it a little easier is that I had grown up with two role models who were also living with CF at the time. I knew that we were "the same" and when my cousin Rose died, I understood and never really asked to many questions. I do know this is normally not the case for anyone else and honestly, it is really odd to have cousins with CF. Siblings are not so uncommon, however, to find 4 carriers who had NO idea they were carriers just so happen to meet and get together for babies is a little rare. So here are some tips for those who weren't as lucky as I was to share my disease with my amazing family!

★Ease into the conversation with a few start up questions just to know where they stand. Simply ask them if they know why they see the doctor so often? See what they say you may be surprised with the answer because they may already know.

★Start talking about the fun things they enjoy doing like playing with toys, sports, being active in any way. Let them know that they have special lungs and need to stay as active as possible. The more they are active growing up the healthier they will be.

★Explain to them that they need to strive for high PFT levels and that you want to start playing games with them to keep their lungs in the best condition. Have a balloon blow up contest with them and their siblings or even with them and you. See who can take on the biggest breathe by taking a deep breathe in and holding it for a few seconds. With children the easiest way of teaching and explain things to them is by making it fun. For more ideas for making CF fun, please read - Tips, Tricks, and Helpful Hints.

★Let them know you are always there when they feel like coughing or if walking around starts to become a problem. Tell them that no matter what you will be there helping them. Being parents this is the hardest part of a CF parent. Having to fight back the tears and the fear to be strong for them is something they will need. If you seem worried, scared, upset, or bothered by their CF it will show and they will repeat that feeling. Kids love the "monkey see "game as we have all found out by the cuss bust that they randomly say in the middle of church.

What about the "death" question? 

★As a younger child this day and age the death or dying topic will eventually turn up. Do not try to sugar coat it, that is the worst thing you can do! Once they figure it out they will backlash at you for not telling the whole truth. Try the best you can, struggle through the explanation of death, your religious beliefs, and possibly touch base with someone they know who has passed on. Explain to them as long as you keep doing everything like the doctors say it will be okay. Always assure them it will be okay.

Once they grow older they will slowly understand everything as life goes on. There is no need to terrify your little one with the scary ideas of death unless they ask. Do not just assure yourself that because they have CF they will not live to a fulfilled life. CF can only hinder you and your CFer if you let it. Even if you are in the hospital more times than you are not always make a point of being positive, loving, and supportive of them. 

You will need to be their rock not just the parent more information about parents dealing with CF please read CF Parents

With positive vibes,
  Sandi

For more information about CF, tips, or just interesting facts, please like me on Facebook! 

Me talking per the norm! 

Teen Weight Gain Tips

What girl in the world wants to hear "We want you to gain weight" from a doctor? Having CF you hear that a lot more than you'd like and normally we really need to listen.

Being a female and a teen at one point I know how difficult that issue can be. Even the smallest girls weighing in at 90lbs will still have that "skinny girl" complex.

With Cystic Fibrosis it is so tricky to gain weight and even more so to maintain that weight. Especially while watching what you eat to stay healthy. Depending on your particular CF, medications that make you sick or not hungry, and a lifestyle, it is a tricky thing to manage. Sometimes even if you are not hungry, you need to force food down. In worse cases a feeding tube is needed for a lot of Cystics to maintain weight, that is a different blog.

For now, a few tips for weight gain that can be simple and personally I have come acrossed to be successful.

• Always have portable "fatty foods" as ready to eat snacks. Such as;
Trail mix
Granola, protein and snack bars
Fig bars
Cheese and cracker packs
Shakes, canned or bottled
Individual peanut butter packets Muffins
Graham crackers,
Vanilla wafers,
Nuts (peanuts, cashews, almonds, walnuts, macadamia nuts, etc.) Sunflower seeds
Raisin bread
Pretzels
Cereal Single-serving
Juice or milk boxes
Dried fruit
Bottles of frappuccino
Pudding snacks (some brands do not have to be refrigerated)
Hot cocoa mix
Fresh fruit

• Start making meals easier to get ready so you can just grab something quick or in between meals so it doesn't get too hectic. 

• TAKE ALL MEDICATIONS AND VITAIMINS AS DIRECTED! I know it's tough, believe me, I know. However, we do not absorb things as we should which is why you're having issues to begin with.

• Birth Control is a good way to help keep and put on weight. Depending on medications BC pills can counteract your medications, so this is something that NEEDS to be discussed with your CF doctor.

 Most importantly, stay active. The more you advance in muscle the more you weigh and the healthier you are. No, I am not saying join a gym or become a body builder unless you're healthy and what to. Just stay as active as possible, keep eating healthy high calorie, high fat foods, and stay on top of things.

Information and fun ideas to help younger ones with eating please read Food & CF

For more tips on life with Cystic Fibrosis like me on Facebook!

Love & Weight,
   Sandi

18+ Female Problems

Parental Advisory
The sole purpose of this blog is to provide sexual information regarding women with Cystic Fibrosis for those who want information. Parents must evaluate the maturity level of their children and judge whether the content is suitable or not. If not, I suggest they do not read this particular blog. 

It is my belief that all, of age Cystic's have a right to honest answers on a personal level about bodily fluids, the same way that they have access to information about respiratory systems or digestion issues.

★Okay so now that I have gotten that out of the way and everyone feels that much more awkward about the whole blog. Let's talk about things "down there!"

Coughing up mucus is something we are used to. As sickening as it is we have to deal with it. Things that the docs don't explain when you're a young Cystic is that mucus is in every part of our body. Yes, ladies even in vaginal secretions.

When we are maturing and getting older things change for all of us worldwide it is what it is. Now sexual content is rarely even spoken or at least it wasn't for me. The only thing we are told about in school is how to find STD's and if you have thick discharge to see your gynecologist. Now a Cystic Fibrosis female will have more secretions and this is actually "normal" for us.

As mucus does to our lungs, it also does to our cervix. Normally you will notice this closer to that time of the month. Your body is naturally going to flush your system each month. So if you discover that you have a lot of vaginal discharge a few days before your period know it is your body getting rid of the mucus build up.

We tend to experience more pain than a healthy woman the week before and continually during our menstrual cycle. This is due to the mucus that lives within our bodies. Just as the pain you sometimes feel when you are experiencing an exacerbation. Your body reacts practically the same. It is not uncommon that weight will affect your menstrual cycle, which can hinder your ability to get pregnant. For more information about fertility please read my Fertility blog.

★Note, if this discharge it is thicker than normal, any color other than white and or clear, has a odd odor or lasts for a long period of time go to your doctor ASAP. Make sure you know your body and the way you menstruate as we are all different and react differently to each thing medically.

Like me on Facebook for more tips, hints, and CF info.

Tell it how it is,
   Sandi

Stress & CF

You hear it everyday how "strong" or "inspirational" you are while living with a terminal disease. Sometimes I just want to yell back at people and explain to them how my definition of strong and inspiring must mean two different things. Because at night when I close my eyes, I know what could await and I'm terrified.

The medication, the bills, the hospital stays. The smiles and tears that go hand and hand. The racing thoughts of will I ever have kids? If so, would I get to see them grow up or graduate college? Or will my man and I live a long and happy life or will it be short and sweet? Will my parents have to sadly have to say goodbye to their child? 

★Treatments are a constant reminder that I'll feel like this forever. The "doom" will follow me to my final days.

Forcing people out of my life is easier than pulling them in. Not having friends makes things simpler in theory. However, when you're left standing all alone with just the hubby and your parents by your side life gets challenging, complicated, and super stressful. The haunting worry about every aspect in our lives makes it hard to get by day by day.

The heartache of everything that comes along with having CF is sometimes too much. Our outer shell is stronger than we are. We smile and dance in our own lifetimes. We make a point of not feeling pain because pain is all we know. There is nothing that can help or change that situation.

So when people say that Cystics are the strongest people they know. I would have to agree and disagree. We are put through hell and we jump back like those weird inflatable people in car lots. You know what I'm talking about the super creepy and always bright colored ghost people things.

★Sometime you just need to take a step back and realize it's all for a reason. What strange and tortuous reason I am not too sure of. However, there is indeed a reason for this.

I believe I was put here to do some good in the world, shine as bright as I can, and love as much as possible. Show the world that those two words, Cystic Fibrosis will never get the best of me even when I'm down and out. At the end of the day we all share and cope with our lives in our own ways. Stress is something everyone goes through at one point or another. If we harp on that stress the world and our lives will pass us by.

There are plenty of foods, techniques,  and even smells that can assist with the day to day stress without needing to add another medication onto our already long list of meds.

For food tips, and more help to manage stress please visit me on Facebook.

Stress fully Smiling Through,
    Sandi