Fertility & CF

Content Advisory
The sole intent of this blog is to provide medical information regarding fertility dealing with Cystic Fibrosis patients, based on my experiences living with CF. This blog is for those who want medical information about fertility and Cystic Fibrosis. Parents please know the maturity level of your children and pass judgment whether the content is suitable or not. If not, I advise they do not read this particular blog.

♥Please remember all Cystic's are different I can merely write from research, and experiences in hopes to help others.

Most people want to have children at some point in thier lives. Most little girls come up with an idea of what they want to name their children by the time they are in third grade. 

☆For me it was, Jordin Desiree and Dominick Weylin. I fell in love with the name my sister picked out for her baby girl and did not end up naming her daughter Jordan. Desiree is the middle name of Lucille Ball, who has been my idol for as long as I can recall. Dominick is after my daddy and my grandfather and Weylin is actually for Waylon Jennings. I wanted to change the spellings and make it more me, "unique". 

When I was 18 I was finally an "adult", far from it, but that's when I began thinking about a family someday. I went to my CF doctors as a regular check up and decided to ask about the possibilities of getting pregnant and what it would mean medically. She told me that the woman that just walked by my door at the clinic was a CFer and she had 3 healthy kids. She then followed it up with recommending that I shouldn't have kids because of the health burden it would be for me and a baby. 

When I got married in 2010 we decided we wanted to have a baby and that it was that time for "us" in our lives to make a family. We tried for a little over a year. Did everything they said we should do foods, certain days, vitamins, positions, and it just didn't happen. Finally, I got fed up and went to the Navy doc and asked them flat out, "Can I or can I not conceive a child?" Tests were ran and I was devastated to learn that I was unable to become pregnant naturally. 

◆I can in a sense look at this a blessing in disguise because we are now divorced. I always look at the brighter side of things as the glass is always half full to me. 

In Cystic Fibrosis patients some of us are indeed infertile and sterile. Roughly 95%-98% of men with CF are unable to have a baby naturally. This is caused by the vessel that travels sperm through to your penis. This vessel called the "Vas Deferens" does not fully developed in Cystic men. I am not sure why this happens, all I know is that it does. Men can enjoy a normal sex life, of course, based on health, as these don't phase sexual things in any way. (Miracles happen every day so this is not always the case)

◆Men that have the 38910kb C-T mutation you are the 2-3% of men that are indeed fertile and are fully capable of having babies. Just be careful and make sure you know everything about, Gene Mutations, where it ALL begins. 

Now, for ladies it is kind of tricky. Most females with CF go through puberty a little differently and later in life than their female friends, especially when the CFer does not weigh very much and are on a lot of medications. 

◆Becoming pregnant for women can be determined by weight, overall health, and regulation of CFRD (Cystic Fibrosis Related diabetes). 

We all know that mucus is our enemy when it comes to everything in our bodies, including our cervix. The extra mucus that we have in our cervix acts as a brick wall for sperm to even find an egg to fertilize. While 20% of CF females produce an extra amount of mucus on top of the "normal" amount for a Cystic making it almost impossible to conceive naturally.  

That is the case for me. I have the Great Wall of China basically blocking my cervix. Along with a tilted cervix, which really makes it difficult for a normal "healthy" woman to become pregnant, making my body Fort Knox. 

◆DO NOT let this bother you if you are one of the "lucky" CFers like myself who are unable to have a baby naturally. We do have several options of still being able to become mommy's and daddy's. 

I know, since Tyson and I have gotten engaged, we have discussed several different options. There is In-vitro fertilization, which is when they take my eggs and his sperm to create a baby in a lab. Once they are fertilized, they then implanted my eggs back into my uterus and hope they take and make a baby. We can take my eggs and his sperm and have a surrogate mother. Meaning the baby would be our biological child, however, another woman be giving birth to them. 

☆I am up in the air with this idea only because, I want to feel my baby moving in my belly, I want to take photos of a baby bump as it grows, I want Tyson by my side and him being the first one to hold our baby. 

The part that kills me is I know we would be such amazing, loving, and caring parents. Our babies would be beautiful and so smart. Smart, because of Tyson of course, not me. I would love to see him scare the hell out of the boys trying to date his baby girl or teach his son how to work on cars and motorcycles or how to fix anything. This isn't just a burden for me, however a burden for him as well. I am not healthy enough to give the love of my life a baby. That hurts and it hurts really bad. Seeing my friends with their babies and families makes me cry sometimes. I am happy for them, especially because I know how crazy and wild they all used to be and now they are amazing mommy's with such awesome little kids, but it still stings.

☆There are several other options for CFers to have children, I have just not listed them. This blog is already longer than I wanted it to be. I may touch base with all of the other ways at a later date.

Wishing for that day I can say "Yes, I am pregnant",
    Sandi 

    For more tips, information, and my adventures with CF, please like me on Facebook! 

Making a 'mess'

Content Advisory
The sole purpose of this blog is to provide medical information regarding a not so pleasant topic on information for people with Cystic Fibrosis based on my experiences living with CF. Only for those who want the information. Parents must assess 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.

♥All cases and Cystic's are different! Please note I can only give information on events I have been through.

Well the title says it all, this is what can happen if a Cfers pancreas pills are not taken properly. You can make a mess of yourself inside an out.

★When I was younger and even now having to remember to take 7 pills before or after EACH meal and 5 for snacks, is overwhelming.  No, I do not want to take them and yes, I hate them. However, if not taken correctly, you might find yourself buying and washing new pants often.

You know when a doctor asks about your stools if they are loose or greasy? Floaters or sinkers? They ask so they understand how your body is absorbing the food you are eating. For a "healthy" person's stools should simply sink and if changes occur a doctor is recommended.

★For a Cystic it is our body reacting to what we eat and how we are processing it. 

The thick mucus of a Cystic can block pancreatic enzymes from reaching the digestive system that will prevent fat from being absorbed. Our body is not able to digest fat, so the fat we eat comes out in stools that are large, greasy, and horribly smelly. This is of course not healthy for us, however the urgency to see a doctor is not AS important as we come across this issue several times in our lives. For more about digestion issues please read my blog about CF & Digestion.

Medications can help redirect this situation and will leave you with less of a problem. CREON is prescribed for Cystic's to help your body use the fats, proteins, and sugars from the food you eat. Taken as prescribed, this meds will replace the enzymes your body is not producing, helping you get the nutrients you need.

For a Cystic the amount you take should be monitored by the amount of food you take in. The smallest amount I remember taking is 3 at each meal and 2 for snacks. As I got older the dosage has gone up first to 5 and now to 7.

★Like most teenagers, I rebelled against my parents and also against CF around the age of 17. I highly recommend not doing these kids!! It really is a bad road to go down.

As a teen I had a friend that had me convinced I didn't need meds and that I was perfectly fine. Mind you we were teens and of course I wanted to "do what I wanted!" Something I was unaware of at this point in my life was greasy stools will literally spill out of you and you will have very little to no control over it.

★Yes I know I painted a picture of myself no one has ever wanted to know. This issue would be a problem for me well into my early 20's as I did not want to give in to CF. This topic is very embarrassing and upsetting for myself and I would assume other Cystic's that this may have happened to.

I had it set in my mind that even if I was sitting at a friends house I would be fine. If I slightly coughed, greasy stools would slip out. I had it in my mind it didn't affect me and it did, I always felt stupid but was so stubborn.

★As most Cystic's we tend to have a stubborn gene.

I would of course excuse myself quickly, make a beeline to the bathroom, and clean myself up. I thought that if it wasn't "noticed" it would all be a figment of my imagination after I had cleaned up. Then I'd go home and my mom would try her best to get this disgusting stain out of my clothes. Of course leading to a typical argument between my mother and I about meds. Sadly, I would never listen. I would get stomach aches that were so painful I was unable to move.

Hiding this secret got unbelievably difficult as I got older and started living with a boyfriend. Always hiding my belly aches, washing my clothes every day, trying to get to the bathroom un-noticed. Throwing away new jeans and making excuses. Or even trying not to sit back down anywhere until I could comfortably change clothes.

Finally, after a 3 month long hospital stay and brush of reality, it showed me that I needed to absorb everything I could from what I ate. Not only does taking CREON help you with digestion and absorption of food, but also vitamins, antibiotics, some medications, and even lotions for your skin.

☆Simply taking one CREON capsule with all of your medication will help you reap the benefits of the entire medication or even grooming habits.

This can affect your skin, hair, nails, eyes, and all physical attributes. I know that being a young teenager, especially these days seem to be very important. Even more so if you possibly think you are at a disadvantage by having CF.

♥Which I assure you, you are not! You are just as beautiful, handsome, and amazing as anyone ever can be, only salty!

So however embarrassing and utterly unbelievably stupid my choices were. Hopefully sharing the knowledge of my mishaps with you will hopefully help Cystic's realize that taking your pancreas pills isn't a punishment. The punishment is pushing off the 'messes' we may make trying to force being "normal" upon ourselves, all while hiding a disgusting lie.

★A lie mind you, that can normally be taken care of quickly!

Don't mistake pills for punishment,
   Sandi

   For more info about CF, myself, or my adventures with CF like me on Facebook!

Tips, Tricks, and Helpful hints

So the typical things that Cystic's have to do is chest PT, take meds, do airway clearance, make sure we are eating correctly. Paying attention to everything we do and what is around us. Everyone is looking for an easier way to do things or a way to get little ones to comply with doing all of these things. So I am going to give some helpful tips that I have been able to come up with or was used when I was growing up. 

◆Putting Creon in applesauce, yogurt, or pudding, something that slides down when eaten instead of chewing is the easiest way to get kids to take their pancreas pills without too much of a fuss. You can also do this with other meds if you simply crush up tablets. You will need to make sure that they are eating all of what you give them to get the full medication. 

◆During snack times to add extra calories even if you have a fussy CFer who doesn't want to eat. Make it a game by using their imagination. Make food, fun, take celery and put peanut butter inside of it topped with raisins (Ants on a log). Or get fun cookie cutters to make their sandwiches come to life.

★ The more fun you have with food the easier it will be making sure they hit a high fat high calorie diet. While trying to help you stay away from sugary cakes and cookies. More fun tips for eating for little ones can be found in my Food & CF blog.

◆During treatments make them be the big bad wolf and have them blow the house down. Tell them that you are in a competition with one another to see who can breathe better. Tell them If they don't get through the treatment they will not be able to defeat a cartoon villain they are familiar with.

Always use their imagination and yours for the little ones. They always want to be strong and the super hero's. You can also use the princess card for the little girls. Go to your local store and purchase a princess crown and let treatment time be princess theme! There are so many things that you can do that will have their imaginations at work. 

★You can also create games to help build lung function which I included in my Lung Strengthening blog

Some silly tricks that I do, personally I would like to pass along, they really don't do too much, but in the end makes things a little easier. 

◆I have too many meds for one of those Mon-Sun pill holders, as I am sure all Cystic's do. So instead I have a night stand that I keep my meds in. 

What I do when I get back from the pharmacy from picking up my meds. Am I first getting ALL of my meds out onto my bed. Go through them, some I can throw away because its a antibiotic I am no longer on or are expired. So get rid of the ones you no longer need. Second, I take the meds I take in the morning, take a sharpie to them and write "AM" on the lid.

I have recently started to write the name of the med on them so I fiancé can grab one if I need it in a hurry. 

I follow through with the before bed/night meds by writing "PM" on the lids of those. Followed by the ones that I take 2 times a day with a simple "2X" meaning morning and night and "3X" for morning afternoon and night! I also have PRN's and label them as such. This makes the transition of meds so much easier. I do not need to go through and read each label when it is time to take my meds. I group them together and just pick up whichever one says "AM" take them and be done. It kills a little time and makes it a little easier. Possibly easier for teens as well.

◆As for vials as soon as you get home if you take them and tear them apart the day you get them from the pharmacy and put them near your nebulizer, it makes it a bit quicker for you to just grab your med and go. I always get irritated pulling them apart if I can't breathe and really need to start a treatment. So having them broken up already helps a little. 

◆For neb trash I have taken a tums bottle that was empty and it is big enough to discard used vials of meds right next to your nebulizer. This way you will not have to go through the trouble of getting up and going to the trash can every time you do a treatment, really helps in the before bed treatment. Of course you could also just have a small trash can next to your nebulizer area. 

★I keep everything next to my bed so it is more comfortable for me to do my nebs and meds. 

◆I have a container that I keep next to my machine with a natural DIY disinfect to hold the mouth pieces of my nebs so that I do not have to worry about bacteria or anything growing on them. It is super simple to make. You just need a plastic container using 1 Cup Water, equal parts of; Lavender Oil and either Thyme or Eucalyptus Oil, and 1/2 the amount of Tea Tree Oil! All three of these oils have antibiotic, antibacterial, antiviral, and anti-fungal properties. Combined with water, they make up a great all-natural alternative to the chemical-based disinfectants. You can get these oils at any pharmacy or Walmart type store. Be sure to change it out every other day or stretch it over 3 days is fine if need be. 

★I did find this recipe online, however, it works wonders and if you are feeling under the weather a little due to natural reasons not CF it will also help with that as well. The only thing is tea tree oil is NOT safe for your furbabies! So be careful using tea tree oils around them. 

◆Of course taking apart the entire neb and boiling them in hot water once a week will stretch out the length of needing to order new neb pieces a little bit longer. 

◆Always have lotion on hand, our skin also lacks absorption as the rest of our body so you should be moisturized often. Most people tend to forget about their skin with everything else we are worrying about. I won't lie, I did until I got my sleeve tattoo on my right arm., now I am OCD about moisturizing. Learning that my skin has always been very dry and flaky. It shows more with the tattoo than not.

I think that is all of the tips I can come up with for now. I know my mind is full of more, so I will probably be writing more on my status updates on Facebook!

Be helpful,
   Sandi

+18 Sex & CF

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. Please judge it's content and make sure that it 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 sexual experiences. The same way that they have access to information about respiratory systems or digestion issues.

★Ok 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 sex"

♥Mom turn away from the blog immediately!

Since I can remember I have head, "Oh my, can you have sex?" "What about ayour lungs?" "Do you get winded?" All questions are warranted and make perfect sense. Yes, is the simple answer. We have no reason to not have a sexual relationship, just as any Tom, Dick, or Sally would. The real question is tolerance, want, desire, or need.

★Mind you I can only speak from personal experiences and all experiences, partners, and situations just the same as Cystics are different!

When I was younger and coming into that part of my life and was "ready" for sex, I wasn't ready at all mentally. I think that is more common than not among many young females regardless of having CF. It is a difficult thing when you are really not sure what is even going on. 

☆None of us actually want to learn about sex from our parents, so we either learn on our own, which I do not recommend, from friends, from TV, or asking questions from another source.

I was never informed of the medical problems that can be made from something as silly a sexual positions! Some situations can cause a Cystic to cough up blood afterwards. Normally this can happen in a straining position, putting pressure onto your lungs, having your legs over your head is an example. 

I was also unaware of the fact that mucus effects more than my lungs and my digestive tract but also my cervix. Which is one of the complications for Cystic females to become pregnant. For more information on fertility please read CF & Fertility.

★Pregnancy is possible for some CFers, unfortunately not for me. The path to reproduction and CF is a difficult one.

I have looked around and have not found anything other than medical rambling that I really don't understand. Maintaining to the subject matter of CF and sex. It seems to be such a taboo topic, but it is part of who we are and the only way most of us are here. 

I figured I was 26 and have had a few sexual encounters in my life. I could try to share my experiences with sex on a personal level for you, without the medical mumbo jumbo. 

Making sure your positions are not going to affect your breathing is a great key to Cystic's being able to be intimate. The other key is knowing your partner is aware of what is going on and is willing to stick by you, even when you need to take mini breaks do to shortness of breath. After all it should be a thing that you do together, and you both should be in it together for each other. 

★You may find particularly there is a position that is best for you and you alone. Which can get boring for your partner if they do not understand. For me, it's strictly missionary or an occasional shower scene. Being the one to make all of the moves just gets too tiresome, and very upsetting for me.

I am not sure how many CFers will understand this, but a simple cheese mat actually makes things easier if you are laying on them during sexual intercourse. This will also help for sensations and your partner for not getting as bored with the same old thing every time. A "cheese mat" is essentially a triangle shaped pillow.

☆You can get cheese mats through any gymnastics place, I even think they have thefunctions, it in the workout section, or you can order them online. They do sell them in sex stores, but they are very expensive if you go that route. What these mats do will shift your pelvis in an upward position. Leaving you lying comfortably without losing your breath as quickly, for more pleasure.

It will basically put you automatically in trendelenburg which I tricked you because now you are also doing airway clearance! While enjoying an intimate time with your spouse. 

♥In the past, I thought if I actually told my partners I was too sick and didn't feel well enough to fool around, they would leave me. I would feel bad and just throw my hands up and say fine whatever I was not wanting to start any controversy. So it was just do it, go to bed, and not talk to him again until I felt better.

 Nearly 10 years after becoming sexually active I no longer feel this way. Which is actually very liberating having that confidence in your relationship.   

Being sexually active since I was 17 I have found that some men, not all by any means. Do not worry if you can breathe properly, or that you  may need to take a break. It seems most of the time it is all about them depending on the man himself and your sexual circumstances. Sorry fellas I don't mean to throw you under the bus like I said not ALL feel this way. However, when you are dealing with sex and a person who has low lung functions, it gets complicated and very difficult. We tend to get frustrated very easily about everything in life, even more so when it comes to things going on in the bedroom not working how we have expected. 

Sometimes I go through my day and after cleaning or a day out of the apartment I am just too tired. Especially the first few days right out of the hospital. That reason for myself and every Cystic female normally isn't just a "line" to shut men up. So CF hubby's please understand it is our know, I and not the typical "I have a headache" excuse . It seriously is coming from our lungs and lack of energy that we just are too tired. We can only do so much during the day that we really want nothing to do other than go to bed some nights!

Me personally I can go forever without wanting or needing to have sex, mainly because I am just so worn out and my body is so tired and in pain that all of my energy was taken out on just making dinner. The thought of sex does not cross my mind like a "healthy" woman's would. Keep in mind this does not apply to all CF women in fact many have a strong sex drive.

★It is a normal thing for females in general to have a low sex drive. Adding disease and pain will add up to having even less of a sex drive. Ladies it is perfectly normal if you feel like you just do not have the desire for sex.

You have to want your partner in more than just sexual ways, understand your partner, and not rush them. By rushing a Cystic through sex you are ruining the entire intimate time for us. Making sure that it is still enjoyable but also possible is the most important part when having sex with a Cystic! 

★It isn't always the easiest thing in the world but it is worth it and means more when you are helpful and patient with us. 

You can also do a treatment afterwards it sounds silly I know. People say that sex is a good source of exercise and that is true. It can also serve as a  mock treatment by shaking your lungs to where you get gunk up afterwards. I know I know who wants to think about sex and mucus right, completely changes the whole image of it.

★ I am a girl that looks at everything as a way to help my lungs. 

Now days its almost a turn on asking for my fiancé to hook up my oxygen if I am laying in bed, its almost like a dirty word at this point. I do feel like I am neglecting him some days as I was able to do a lot more when we first got together. However, he does remind me that sex isn't what he loves about me. I'm thankful that I have found someone who doesn't mind that it takes forever with several breaks or that I feel I am unbelievably unattractive with the oxygen on. He understands, supports, and loves me for me.

♥Which I do believe everyone out there will find that person one day, Cystic's or not. That is all that matters. When it is the right person they will be with you through the hard times and the times where you have no desire, from being to tired. 

Desire love,

   Sandi 

   For more tips, info, or my adventures with CF please like me on Facebook!

Successful Failures

I've always promised to be real, honest, and raw with my blogs, to being a CF advocate and help when help is needed. So this one is a little more personal than most.

On our way back from a great trip to Ohio to see an amazing friend and her beautiful new home. I realized something that really took me back. I mean completely shocked me! I am a huge cry baby and those of you who know me know that. I cry at the most random times and even when a friend shares a status. But this time it was different, it was in silence on the drive home, sitting next to the man who would cut his arm off if it meant helping me in some way, yet I hid it from him. It wasn't until Monday (11/4/2013) I told him that my heart was breaking and I was crying while he was watching the road.

I looked into the sky at the stars shining so bright in the middle of corn fields, Sunday night and saw an unbelievably beautiful skyline. I sang to the radio, oddly to a song that sums up Tyson in one word, "Strong", and held my dog in my lap. Finally realizing that I was a "failure!"

All of the accomplishments I have been able to do are amazing and I love each person I have met, and everything I've ever been able to do. Although I've always been a "failure" in every attempt of my adult life. I guess you could say I go for things that are too big and then when they fall apart, I carry it on my shoulders as I could have done things differently and the outcome would have changed.

Let's start picking through what was going through my mind late Sunday evening while looking up at the stars. Thinking "Sandi, you wanted to be an astronomer, but you were too stupid to do it. Hell, I wonder if I even know how to spell, astronomer? 

★Point proven I spelled the first one wrong on purpose! That is how I would have spelled it without searching for it first!!  

☆We can start in high school, I was a cheerleader and so proud to be. Yet, I was never on the Varsity team. I was terrified to pull any actual stunts outside of a back hand spring.

☆Graduation I am pretty sure I was only given a diploma because the teachers felt bad for me and liked who my personality was so they just passed me. However, I graduated with nothing special, but a 2.5 GPA

☆College well that was just a huge waste of time, money, and energy. I didn't pass a single course. I did make lifelong friends through my sorority but I made just as many enemies. 

☆Being a Hooters Girl I was successful at first- until I got sick and needed surgery. I was never really able to go back once I was healthy again, one reason being I moved to CA. Another reason being my Hooters was closed shortly after me working there.

☆Then we go to a marriage, a marriage that was stupid.  Both of our tickets to California via the United States Marine Corps. I acted like a fool with my ex husband, doing and saying things I regret now more than anything and you can't take some of those things back. We both decided we could make that move and both jumped in feet first! That just had failure written all over it. 

★Only fools rush in and we were definitely the fools in this case. Ending in a divorce before the age of 25 and only been married a year!

☆My modeling career, well lets see, I did get several modeling jobs. Which are awesome memories and I LOVED every single moment of it. Some jobs I would get and then never follow through because I was to home sick or to depressed to follow up on them. So I would use my lungs as an excuse for not making things happen. I was presented with so many opportunities in San Diego and LA that I just ignored them and I don't understand why. I did go to the Playboy Mansion, so that was great. However, I went by myself and was terrified I left after 2 hours of being there. Everything I've said is true about the mansion the people I met, the grotto, Heff, how awesome it was, I just didn't explain I was too much of a coward to stay and talk to the right connections to get my modeling career further.

☆Moving back home, I ran away much like everything I've ever done. I darted out of the possibility to have a bigger modeling career, walked away from going to the VMA's, walked away from Playboys offers, walked away from the maximum, from several fashion designers, and modeling gigs! Ran straight to Fairmont to the hole in the wall in WV! Filed for divorce and tried to start over.

♥My love story with Tyson is 100% real everything about it is a fairy tale so far. I haven't done anything yet to make this a failure.  I feel more like a success when he is there to balance me. He helps me realize my dreams are great and can be accomplished, but I need to go about them on a smaller scale than I used to. I can no longer just jump in feet first into things, my health will not allow it anymore. Lets face it, it obviously didn't work that way anyway right?

☆DRG or The Ribbons of  Hope Calendar. The nonprofit organizations and publication I started with such high hopes and great expectations to bring awareness for all rare and uncommon diseases, not just CF. Has been nothing but failure after failure after failure! No matter what I did how hard I pushed and kept going. It was a joke, a joke that could have been amazing if not for my kind heart and blindness to bad people. But you will go crazy thinking about the shoulda, woulda, coulda talk. So that's where I will end if for this set back in my life.

☆I started doubting my CF page and blog altogether until yesterday (11/5/2013). When I received two separate messages thanking me for everything I write, share, and put out there for everyone, because I have helped a CFer's husband and a Cystic's daddy to understand CF a little better. Mind you I did get messages like this regularly and it just melts my heart to think something I have to say is actually taken in. For once in my life I feel like I am at least doing something right! However, feeling down and blue yesterday those were what I needed, to get the push in a happier direction. 

★I am a very spiritual person, so having these two amazing people tell me that I, have helped them and to keep going and writing my blogs, and giving tips or info, meant so much more to me than just words read on a computer screen. 

♥As long as one person is inspired by anything I was able to accomplish or can do, I am not a "failure", I feel like my goal has been accomplished.

Going to bed with tears in my eyes tonight, hoping to feel I do have a better purpose to help others living the Cystic lifestyle. I have realized I am a successful "failure" if that is even possible!

★To note: The only three things I have been successful in are my Man, Hooters, and my CF blogs/FB. I mean 100% successful, not just a glimpse of something I wanted, then didn't finish through or was stopped from being able to! 

With Broken Strength,
   Sandi
   For more info on myself, CF tips, or just my adventures please like me on Facebook!

The love of my life!
"He's a 20-year straight get to work on time He's loved one woman for all his life He's a shirt off his back give you his last dime He's strong. He's a need to move something you can use my truck He's an overtime worker when the bills pile up Everybody knows he ain't just tough he's strong." - Will Hoge, Strong

Retired Hooters Girl!

My First CF Awareness Poster! 

Traveling & CF

Everyone wants to travel the world, I mean you'd be a fool not to, right? Yet this fun loving disease makes even going to another CITY difficult, not just a road trip! Traveling anywhere as a Cystic can be very hectic. You have to double check your meds and count to make sure you have enough for the entire trip. If not you need to make arrangements with your pharmacy, doctors, and insurance. Then comes the heavy lifting depending on your personal treatment methods. I know most younger Cystic's use the VEST! Which it is portable and comes in many different forms now, however, that is not the point. Along with Oxygen tanks if you are like me and are a Cystic that needs to have oxygen either all the time, at night to sleep, or just as needed. Making sure you are FULL and have enough hours on your tank for however long your trip may be. Depending on where and how long you will be gone you will also need to prepare a cooler with ice packs for your meds that need to stay refrigerated!

♥When I was younger we got the "first" VEST and I was trying it out to see if I liked it, which I didn't. I had a cheerleading competition in the northern part of WV. It was about a 3 hour drive to get there and had to stay overnight. So of course we had to lug this thing with us. It was huge, bulky, loud, and very annoying. The best part was when my friends decided they all wanted to try it all. One thing leads to another and we ended up making prank phone calls and even ordering pizza with it on. If you are familiar with the old school VEST or even the new ones they are very funny to wear, and shakes your entire body. Making your voice sound really weird and robotic-ish.

♡Nebulizer's all have to be packed and somehow keep them sanitary. I always carry antibacterial gels of some type or Lysol. Packing them in a zip lock baggy will also help keep them clean and safe away from anything you may have rubbed against the actual mouth piece of your nebs. The best is when you are flying on a trip. Your nebulizer is easily taken apart and makes it a little more mobile. Yet while in a suitcase being scanned looks like it could possibly be a bomb or some type of terrorist machinery. I never get away clean I am always stopped, everything is searched and asked before getting on a plane. Or the luggage that get sent under the plan has the sticker stating that they had to search the bag.

I have a separate set of meds that I consider to be "travel meds" so I won't need to go through the crazy hassle of taking them all and putting them in and out of a bag and so forth.

★What I do is actually really easy and simple depending on how often you are hospitalized. However, I am normally in the hospital for 10-14 days several times a year. While at home, I have all of my medication sitting there not being taken because the hospital supplies my meds. So I take the unused ones and put them in the same bottles that I would normally just throw away after being finished with the med, just so they are marked correctly and legally! I have a specific bag for traveling and I will put them in that bag. No need to waste medication if they are perfectly good and do not expire. Just be careful if you do this to make sure you know the expiration date. You can do this with vials as well, such as albuteral.

Traveling and seeing everything we can is very important to most Cystic's I have ever met. We want to get out and see everything we can. It is a tricky and long drawn out process, but it is also worth it. 

♥I have been able to go to 20 of the 50 states in the US and cannot wait to travel to the other 30! I know I will one day I just do not know when! 

The time spent is worth packing up everything CF related, dealing with doing treatments in the middles of your days, making sure meds are still taken on time, and trying to get in as much chest PT as possible! As I prefer hands on chest PT and not the VEST so that gets complicated!

Travel, live life, and always carry an emergency inhaler!!
  Sandi

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