CF, You, & Me

CF isn't a selfish disease and doesn't solely control your body it affects EVERYONE who has ever stepped into your life. Even those who are no longer a part of your life will forever have an impact by the disease, simply by making them aware of it. Everytime Cystic Fibrosis is mentioned those people will always think of you and your fight if they want to or not.

So, how do those who are closest to you cope with the disease? How do they deal with tragic and terrifying situations CFers have to go through? Honestly, I have no idea! Logically the only way of knowing this was for me to ask my family what CF and knowing me has meant to them. What watching me grow up sick and overcoming the expectations has been like and this is what they had to say.

☆Keep in mind everyone reacts differently to the disease and the CFer, so my family's answers are their's and their's alone. I only hope that a little advice from them can go a long way for you!

Peggy - My mommy
   From the very beginning when I looked into the eyes of my beautiful daughter I knew she was a fighter. Even though the doctors had already written her off as failure to thrive. There were quite a few scares and tears as she grew up, but it never seemed to stop her. We made sure her life was as normal as possible. Keeping her mind as well as her body away from the negative and towards the positive was one of our main goals. She reached for that golden ring in what ever she chose to do and still does, whether she seceds or not she always gives it her all!

   Raising a child with CF taught me not to give up, no matter what the Dr's. have to say. We made sure she stayed active during her teen years. I knew she had all of this energy inside of her so we took advantage of it. First with cheerleading which she excelled at, to camping, motorcycles and swimming at the local pool everyday every summer. It all sounds like a pretty normal childhood I'm sure, but the hospital stays were anything, but normal.

   So many Dr's. said so many different things! That alone can be overwhelming! At one point it felt as if we had moved into the hospital we had been there so long. But, like a trooper she has always had that smile that lit up the room as to say, "It's alright mommy I'm going to be ok. Besides there is a dance next week and I'm not going to miss it!"

☆My advice, if any one is interested is to make sure you show your CFer that she /he is not alone and that you are there to make sure they know that CF it not a death sentence, it is a reason to live as happily as anybody else out there and do it with a smile! ♡

Peanuts - My daddy
  Any advice I can give to another CF parents is to love them to death and let them do whatever they want and no matter what happens stand right there good, bad, or otherwise. The day Sandi was born was the proudest moment and the most terrifying day not knowing if we would get to see her succeed. A parent is never supposed to bury their children or even think about it and we do everyday.

   One of my favorite memories was escorting her across the football field for homecoming court she was so beautiful. Oh hell, I can't pick just one thing we did together that stands out it is everything. Every cheerleading competition, motorcycle ride, or dirt bike racing I loved every minute of it. We never stopped her from doing anything she wanted if she could physically do it or not. We just did it with her and she never failed.

☆She never had the word, " no " in her vocabulary. That may be why Tyson has so much to live up to, sorry man!

   If you take anything from this old man always help your kid go out there and give life a shot. Let them do what they want even if a doctor says they can't. Kids are kids no matter what!

Tyson- My "Husband"
  The ups and downs to being with a my terminally ill "wife" have been many. As you all know Sandi has Cystic Fibrosis. Something I didn't know much about until I starting going around her. It's not the same for everyone, but these are my thoughts and opinions on our situation.

   When we first started dating it really was just like any typical relationship. Within a few months came her first hospital stay when we were together. I wasn't sure how to react or how things would go, but it didnt change a thing for how I felt for her. Two weeks later she came back home and everything was back to normal. Hospitalizations gradually became more frequent from once every 3 or 4 months to every month and now to what seems like she is in there for 2 to 3 weeks, home for a week, and back into the hospital.

   I have been there for surgeries and helping her recover at home many times. It does tend to put a strain on the relationship just because there is a lot of time spent apart with tons of worry and concern on how much longer will I get to be with the love of my life. It does make us appreciate our time together at home a lot more.

   It's also hard to schedule or plan things for the future, because it's not known when she'll be back in the hospital. I do my best to make sure she is happy and does not go without. I utilize the time she is in the hospital to set up small surprises for her when she comes home. That way she knows I'm always thinking about her. I give her everything she wants and needs anything to see her beautiful smile. My biggest worry is losing her as she means more to me than anything in this world.

   Even though it's a tough situation for anyone to be in when you love someone and care for them as much as I do for Sandi you will go through anything side by side until the end of time!

☆I was told by a member of my own family that I am too young to deal with the situation I am in and to leave her while we were dating. Let me just say he is wrong and it couldn't be further from the truth.

   Don't get me wrong it is difficult, but I am able to stay strong and we go through this together day by day! I feel that the strength I am able to show and put out reflects very well and it helps her to stay strong and continue to fight. I refuse to let her give up or slow down. Sandi is a fighter and will continue to be one. I love you Sandi, we can do this!

Derinda - My big sister
  Me being 10 years older than Sandi it was kinda hard seeing her get all the attention and not really knowing why for the longest time. I felt jealous, neglected, unwanted and all kinds of negative things, although I wasn't it was hard. As I grew to kinda understand the problem and the disease I let go of those feelings and was amazed at how strong she is for as tiny as she is.

   Yeah, I was still kinda jealous of all the attention she got, but I was and am a big part of giving that attention. I remember giving her, her breathing treatments and helping her count her pills.

☆Apple sauce was it's own food group in our home. As it was easier for her to take all of her medication mixed in it than it was to swallow many large capsules.

  I guess growing up I felt she was a spoiled rotten brat and now that I'm grown I know she is. Just a brat who deserves to be spoiled. Now, I'm only jealous of how strong my baby sister is, I wish I had half the courage that she does.

Everyone handles diseases differently including your siblings and friends. Not one person is wrong for thier feelings and ways of dealing with CF. Just remember that CF includes so many people, not just the patient.

Not alone,
  Sandi

For me about Cystic Fibrosis, my story, or random CF tidbits find me on Facebook.

Always Smile

Why?

I wake up and put my feet on the floor take a deep breath and cough for what seems like forever. Coughing up blood mixed with the thickest nastiest mess anyone could ever imagine. As soon as I wipe the sleep from my eyes by body is demanding, unforgiving, and inconsiderate. No, I don't have flu or am I catching a cold. This is what happens every morning of everyday and continues on for the rest of my day.

☆Multiply that so called normal morning by 5 and you will get a glimpse into what it's like when I have a CF exaserbation. Heaven, help me when it's pneumonia or my Burkholderia Cenocpacia flairs up!  That is a entirely different form of hell eating my soul alive.

So, everyday I put a smile on my face and everyday at least for the majority of the day that smile is a real one. It isn't forced for the most part of every day. I mean really what do I have to not be happy about? I have an amazing husband that would walk to the center of the US just to grab a rock out of a cave for me if I wanted it. I have parents who have devoted their lives to making sure I was as healthy as I could be and that I see each milestone birthday. They made sure I never went without no matter how much they went without when I was younger. Honestly, they still do this to a point. I am blessed with my family and the hand full of friends I know I can count on. I have things that people would kill for and I've done so much in my short terminal life that most people will never be able to do in an entire life time. I have it made! I honestly couldn't ask for anything more!

But, then I do! I ask why? At least a hundred times a day!

☆Why, do I need all of these meds?
☆Why, am I the one in my family that was blessed with this terrible disease?
☆Why, do I deserve to feel this way?
☆Why, does my heart break everytime I see pictures of my nephew and niece having babies, yet I can't.
☆Why, do I think about my funeral at least once a day?
☆Why, can't I just wake up and the pain be gone?
☆Why, am I 28 years old needing to wear oxygen to live a semi normal life?
☆Why, am I this young on hospice care?
☆Why, must I fight for pain relief and medication when I'm on hospice care?
☆Why, are the odds of me dying before having a baby really high?
☆Why, does it hurt when I breathe, cough, or yawn?
☆Why, do I need to do treatments for more than 3/4th of my day?
☆Why, was I forced to drop out of college, because of the amount of time I was in and out of the hospital?
☆Why, is the last one fair?
☆Why, did I have to spend most of my adulthood in the hospital?
☆Why, do I have to miss the milestones in my family and friends lives, because of hospitalizations?
☆Why, do people have to stare at me when I'm out in public wearing oxygen?
☆Why, do people who get angry with me automatically start attacking my disease and not my opinion?
☆Why, will NONE of these questions ever be answered? At least not legitimately.
☆Why, me? I didn't do anything wrong to deserve to be sick. I was an unborn baby cursed with bad lungs and a lifetime of constant battles to live.
☆Why, do I have a hideous scar covering my entire stomach?
☆Why, do I have to eat so much that food almost turns my stomach just to maintain a weight above 100lbs.?
☆Why is it that I seem to be getting worse and the worse I get the less amount of friends I tend to have.
☆Why, do I always feel like my head is going to explode?
☆Why, do people give me fake sympathy smiles and pity conversations?
Why?

I can go on and on, yet I will never get the answers. No one knows the answers. It is something that will never have an definitive answer. It's not black and white. It's not even grey. It's a big blur of mixed emotions, pains, stress, depression, happiness, hope, strength, and so much more. That will forever leave me stumped!

You can be happy and lead a positive life, yet still have all of these questions going on in your head! Still have bouts of sadness and depression. There is nothing wrong with being mad at your disease. There is nothing wrong with wanting to throw in the towel when things get so hard and you can hardly walk, as long as you don't actually do it.

☆That's where the strength truly is. Knowing how easy it would be to throw your hands in the air say "The hell with it I'm done!" but you don't. Instead you keep pushing on with a smile on your face! You smile for all of the good things you DO have going on and keep hoping that one day some of those questions can have an answer.

Wishing for the answers,
  Sandi

Follow more about CF and my journey on my Facebook!

Life's Balance

WARNING: This is probably the LONGEST blog Ive written thus far. Please bare with me as it does include tips for keeping a balance in life.

The average "healthy" teenager growing up in the US have many things on thier minds. From cleaning their room, doing their chores, going to school and striving for good grades. Maintaining a social life while hoping to "fit in".  Deciding to join after school clubs or sports, having a part time job after school, and spending time with both family and friends. Experiencing young love, the pressures of unsafe sex, drugs, and alcohol. Who to go to homecoming and the prom with and finding the perfect dress. Stressing over the SAT's and ACT's, which college to pick, and figuring out what career path to be on.

☆The list honestly goes on and on, as you slowly transition from adolescents, tweens, and teenagers into young adults.

Learning the meaning of responsibility as a young teenager is crucial in order to grow up and be successful in today's society.

Then comes the tricky part!! Let's throw in curve ball to the typical teenage life, as if they don't have enough going on, by having a terminal or chronic illness on top of everything else. Being a teen diagnosed with Cystic Fibrosis or even MS, Juvenile Diabetes, Lupus, Childhood Cancer and Sever Depression just to name a few can be detrimental. And, BOOM! The stress multiplies.

☆BALANCE is key. How you live your life as a "normal" teen while balancing your medical life at the same time can be overwhelming. This is something I struggled with my whole adolescent life.

☆When I say "normal" It's only because I am willing to bet that all people with any disease has thought or said, "I just want to be normal!" at least once. 

♡I know I have thought it, whispered it, screamed it, and cried about it many times over the years! I have come to realize though, normal is over rated. Strive to be DIFFERENT! 

First and foremost, NEVER be ashamed of your disease, because if you are, it will make things a lot more difficult. Always be willing to speak about it even if it's a small tidbit here and there. If you don't talk about it at some point your friends will have no idea what's going on or how to help you if need be. Be as open as you can be without going too far that it bothers you. Only you can judge what you are comfortable sharing. The more you talk about it, the more comfortable you are talking and educating people about your disease. Which is what the CF community needs most!

☆This was my go to when someone would ask questions about CF when I was a teen, "It's a lung and digestive disorder". Back then I refused to say the word, "disease." It did open the dialog after a while helping me be more accepting of CF.

This statement is a perfect example of balance, but I always see negative comments when someone posts or says it. "I have Cystic Fibrosis, Cystic Fibrosis doesn't have me." People are trying to discredit that statement by saying,

"If you say that you have CF, CF doesn't have you, then you are letting CF control you."

This is NOT true! Yes, you are admitting you have CF and rightfully so. You do!! Kudos for being strong enough to put it out there in the first place. Be proud of who you are. Be proud of the hell you've gone through. The second part of that statement, means you are saying that you are strong enough to balance a life with CF without making CF the main focus of your life. Stand by that statement no matter what anyone says, because it is 100% true if you truly live with balance!

☆NEVER let the opinion of another person make you feel like you are doing something wrong by sharing your strength against CF. Especially some of the CFers on the Internet. They can be brutal.

In reality they may actually need your help to guide them in the direction of opening up about the disease themselves. You never know what they are going through. Try not to retaliate to Internet bullys, it is just pointless to try. 

☆This is based only on MY personal life and how I have and do work to balance everything the best I can. I can't vouch for ANYONE else or their schedules/work day/or anything else.☆

Finally we are down to the helpful part of my long rambling.

•When you wake up, sit on the side of your bed, clear everything from your mind, all of the negativity, pain, issues, school, tests, BF's or FG's and just normal teen life drama. Take three very slow and very deep, well as deep as you can, breaths in and out. While you make yourself have the first of many coughing fits during the day. Yes, this exercise will help you medically as well. I tricked you!
   ☆Combined relaxation, exercise, and CF
   
•Put on your oxygen if you need it, shoes, and then take the dog for a walk. No dog? Just take a short little walk outside. Breathing in the nice crisp morning air before doing a treatment helps by opening your airway to get a better treatment.
  ☆Combined animal bonding/nature with CF

•Afterwards it's chest PT and nebulizer time. I know you can't wait for this part of your day. 

☆Just one out of the 3-4 daily treatments last roughly 30 minutes to an hour. 

While doing treatments try studying extra for each class while your vest is on. Do flash cards and have your parents ask you questions and answer them. You can NEVER study enough and this way you are doing two things you don't really want to do at the same time. That's a plus right? If your like me and do manual chest PT make your sides a drum and sing along to the beat with whoever is beating on your back. Of course you can always grab that phone and play on it for the duration. 

Plan your week and figure out what time practices or games are, who has what sleep over planned, or what events are going on during the week. Those type of things can help the time go by faster and can be the balance of your personal life and your sick life.
  ☆Combined social, school, and organization of life with CF

•Text your friends while finishing your treatments and find out what they are wearing and all of that. If it's a special day at shool or if you need to wear a certain thing for something. Then get ready for your day however you would normally do. ☆Remember ladies a little makeup goes a long way and accessories make the outfit

☆Now, while you're at school balancing CF and your normal life shouldn't be too difficult.

Try to form a relationship with your school nurse and guidance counselor, so you know if something happens you can go to them. My nurse had all the medications I would possibly need in her office. That is something to stay on top of and makes each day at shool a lot easier. Everything else was basically normal. Go to class, be with your friends, make memories. PAY ATTENTION and take as many notes as you can. Try to learn something! Pace yourself when walking and always sanitize/wash your hands often.

•After school activities or practices can be difficult with staying healthy and energized. Remember to always bring snacks and a bottle of frozen water in your bag. When it's time for you to need a drink of water it will still be cold. Bring your albuterol inhaler with you. Use it before and after any active activities you may be doing. You can't bring your vest to school, well you can, but let's think reasonably. Any REAL physical activity will actually stand in and act as your vest/chest PT for that time anyway.
  ☆Combined after school activities with CF

•When you get home from school take your evening medication and start a nebulizer treatment. While that treatment is going start some homework. See all the fun stuff you never want to do can be done together. It makes it so much easier and faster to put it behind you and have more of a night ahead of you. Chat with your friends and see what your plans may be. Try and eat dinner as much as possible at home with your family. Family time is very important for the balance you want to achieve. Needing support is so crucial for a CF teen. If you're allowed to go out with friends then go make some memories and have fun. Just always take medication and inhalers with you. Simple as that.

   ☆Combined your home life, family time, school, and friends with CF

•Last step of the day at least in my chronicles of the CF life. Of course there is so much more. Before going to bed try that walk once more. Breathe in the fresh air and out the bad air. Moving all the mucus up and out! Then start your last vest treatment, nebs, and medication. Still do the same things I mentioned before during all of your CF regimen. Include your friends or family making it less irritating and isolated. Study, read, plan, and so on. Then get ready for bed however you like.

☆In the end you need to not be mad at the disease. We all hate it and can't get away from it, but no good will come from it if you don't fight back. Sadly, CF wins when we mistreat ourselves by not doing treatments, taking medications, and not being able to talk openly about the disease.

Once you get into your personal grove and the right amount of balance between life and your disease things will be easier for you to focus on the important things in a teens life. Like who's winning the homecoming game, which dress to where for prom, and what concert to go to over spring break!

I was there once,
  Sandi

For more information on my journey, CF tips, or education please follow me on Facebook

Live like you are dying!

Well, Tim McGraw said it best. That when you get the news that you can know the reason and so called time frame of your death you panic, plan, and do more. 

For me this has been how I've lived my whole life. At least from the moment I understood that if the disease I was living with, my disease, could take the life of my cousin Rosie it could do the same to me in the blink of an eye. Mind you I was very young and didn't understand death until that time, but that is when I understood. It was then that the realization of Cystic Fibrosis, hit me. The raw fact that CF can take you at any moment. Is was making it easier to live each day as it is your last.

☆At least that's how it is for me, hints all of the goals I have been able to accomplish. Rolling over and listening to these doctors wasn't in my path. From a young age if I set out to do something, I did it!!! CF aside.

It has almost been a year since I was told I had 6 months and that I was on my last breath! Since then I've been pushing and pushing to make sure that statement is not true. Despite what the numbers, levels, and tests say I am still here. I am still fighting. I still and always will be here, smiling!

According to my PFT'S my FEV1 level (lung function) is, or at least the last time I was tested, was 16%. I have had so many question if that's true and how I can be doing anything with such a low lung function. I have had many say I am a fraud or and attention seeking by making up numbers. Well, first off I post almost all of my PFT'S from the doctors so you can see the numbers in black and white. Secondly, I have no one to prove a thing to. I am here for you, your children, friends, or even spouses to share what most won't and hopefully help you to understand CF a little more. Nothing more and nothing less do I seek.

☆The difference between me and someone else with my levels and I mean no disrespect, is my personality. My will to never give up, constant positivity, my aim to keep reaching for my brass ring, and to never give up on your dreams is always there.

With that said, I did discover that I was slightly dependant on my oxygen, which I advise everyone to be very careful not to let that happen. As it can happen fast and you have no idea that it has.

☆We are ALL different and our bodies always act differently under pressure and changes. Do not stop using ANY medical equipment without consulting a doctor.

What I mean by this is with my upcoming photoshoot for, INKED Magazine I have been pushing myself very hard. Pushing to stay in shape, to be able to have the energy to finish a photoshoot without having multiple issues, and to simply have it done. I feel like hell at the moment and yes, my body HATES me. However, for me once I get there and the shoot is done it will all be worth it in the end and I will be a little healthier for pushing so hard.

☆I do not recommend pushing yourself to the point that I have unless you have a GREAT support system who can tell when you need to stop for a bit.

As I am doing this I have slowly noticed I do not need to wear my oxygen 24-7 anymore. I can go for hours at a time without it on. Yes, I am slower and yes, it takes me longer to accomplish little things, but I can do it.

☆This is something that last year would never have happened. So, that's progress.

I believe that when I have a goal to reach for,one that is in my grasps such as this photoshoot, I tend to push myself further to make sure it happens. In the beginning it is torture, but in the end it is magaical.

Hell, this time last month I was unable to walk my whole house or shower without wearing 5 liters of oxygen. Now that I have a shiny future ahead of me to grab and conquer I am slowly making my lungs better on my own.

☆Basically, what I am saying is even though I was told the end is near, I am on hospice care, and am sick I know I can live a lot longer. Because, this photoshoot is real and it is coming up in the near future, Oct 10th 2015 to be exact. I am going to fight for that future until I achieve everything I want to do. I'm not leaving this world until I'm old and grey!

Never in a million years let numbers in a computer depict your life worth. Only you can do that! Only you have the power to say, "I think I'll go for a walk outside now" or "no, I'll lay here. I don't. .. [insert excuse here]" Sometimes pushing yourself a little more than normal is amazing for you in the long run!!

☆So for me this past year has been living like I was fighting to live. Not that I was living like I was dying by any means.

Everyday has been an adventure and some days it's hard as all hell to get out of bed and trust me some days I don't want to smile, and the thought just makes me want to punch myself. Then once I re-evaluate myself and realize how far I have come all I can think of is all of the teens that struggle in life with so much ahead of them.

Always know no matter your obstacles, if you have a smile on your face, fire in your soul, and determination in you heart anything can be done. Extra hours, days, weeks, months, and even years can be added to your life if you just get out and LIVE!

If I die young,
  Sandi

Hospice Hell

DISCLAIMER: Please understand this particular blog is my personal experience with an independent hospice agency in my area. Not all and I hope not many experiences are like mine. This blog is only to show others what I went through and how to make sure it doesn't happen to you or your loved ones!

☆As promised here is the scoop on my experience with Hospice care. Please understand this is a month and a half of events I am trying to put in this blog. It is long!!

When you hear the word "Hospice" you can't help but feel a little terrified and scared. I was put on Hospice on June 10th 2015 due to my health getting worse by the day, the fact that I am NOT going to do a transplant, and my will to be home longer than two weeks.

☆Keep in mind I have literally been admitted once a month for the past year and a half. Watching life pass by and only seeing things with and about my loved ones via Facebook.

The first night I was admitted went very well which gave me great hope. The nurse was amazing and I automatically clicked with her. I was very upset when I found out she would not be my primary nurse, but I was under the impression that my primary nurse would have the same bedside manner and attitude as the on call nurse. Jokes on me!!

The next day when my primary came she was older and was put off by many things. My age, my hair, and my tattoos as she made vague comments about all three. She mentioned what happened with me and the infusion company before being on hospice, I explained that situation in the CF, Drugs, & Rock and Roll blog.

♥ From that moment on she would continually talk about the only CF patient she knew from her home town and was admitted into rehab for drug addiction and that she hopes that isn't the path I'm going down.

She then follows with- "I do not know anything about your disease and what your needs are. I'm going to have to do some research evenutally. Your a mystery to me." Right there was the last straw with this nurse. I was done in my mind. I called and requested a different primary nurse and was ignored.

So, she continued to come out for the first two weeks. I started feeling sick with what felt like a CF flair. Knowing what was going on I needed IV meds and informed the nurse of that and my symptoms. Shortness of breath, coughing blood, lower oxygen stats than normal, low grade fevers, and massive pain. So I asked for IV antibiotics by name and she told me I didn't need IV's she'd have the doctor order me oral antibiotics and to just "do an extra treatment". Not only did she have a doctor that I have yet to meet or talk to order me oral antibiotics, but it was the smallest dose possible.

☆One of my personal CF issues is malabsorbtion!! Oral anything does not work for me unless the dosage is through the roof. However, I went along with it to comply so I could be able to say, "I tried it your way now can I get IV antibiotics?".

I finished the pills and surprise I wasn't feeling better only worse. At this time we were having some issues with my pain management and where to hook my pain pump to. Either subcutaneous injection in my stomach or using my port. I did not want to do the subq what so ever because, yet again absorbing issues. She then tells me on a Thursday, the last time I'd see a nurse until Monday, to go ahead and connect my pain pump to my port and we would sort it all out Monday and that is what I did.

☆I was yelled at by, who I'm guessing is woman in charge of everything, I still do not know her title or role and to be honest I don't care to. For using my pump with my port. When I told her I only did it because the nurse told me to do it that way in order to get the pain medication through the weekend. The nurse denied telling me to do so!!!!!! Making me look bad and like a liar when I was doing what I was told.

Still sick with fevers and everything I asked again for IV antibiotics and was told she would order them. She never did instead she ordered a low dose of Levaquin to take orally. I got irritated and even more so when she asked, "Why doesn't oral pain medication work for you, but oral antibiotics do?" I kid you not those were here exact words. My response was simple, "They don't! That's why I am getting worse and begging you for IV antibiotics!" She didn't say anything else.

☆The nurse would come and count every pill I had. Not just the narcotics but even Claritin and my Creon. Making me feel like a horrible person all the time. Treating me like a drug addict making me terrified to take anything without thier ok.

My pain was also so high that I was not getting relief at all. I was thinking I had built a tolerance until I realized I was only getting .01 of diludid subq every hour. Basically I was really only getting HALF of that. So, I took the subq out and said screw it I can deal with pain, it's whatever. I put the pain pump, pain medications, and purse I carried them in up and didn't touch it for 3 days.

For what little medication I was getting I started to have a small withdraw so I thought WTH lets connect me back up. I called the nurse and had her come out to redo the subq and connect the pain pump. When SHE pulled the med bag out of my purse it was leaking and had a needle mark in the bag. I quickly examined my purse and found garbage from when I was out last. There was a the empty syringe, needle, empty benadryl vial, and saline syringes from when I was drawing up my Benadryl last. All still inside the purse that my pain meds and pump were in. I can only think I was rushing through everything that I didn't click the lid on the needle hard enough to close it. Tada hole in a bag.

☆Yes, another only can happen to Sandi situation. She saw the needle along with the garbage and everything that showed it wasn't tampered with, it was just stupidity on my part. She failed to inform the infusion team of that. She went into another room of my house and told them it was a needle mark and all of the meds were leaking out of the bag. Last strike for me and the infustion agency. They pulled me from their services and 5 minutes later came and took everything I had medical wise and will never let me use that service again. Not for IV antibiotics, PORT changing supplies, or IV related items.

She decided to have a "heart to heart" with me after the infusion company left. She yet again brings up the Cystic she knows who was in rehab and then says something that made my jaw hit the floor.

"Someone is trying to take your pain medication it's obvious. It could be you, your husband or your mother. If it is one of them you have to ask yourself, how much do they really love you? They must not love you at all if they are poking holes in your bag and taking away from you."

☆Now, I know for a fact that, that is 100% bull shit, however IF it were true not a single person I KNOW would be that stupid as to poke a hole IN the bag and basically throw away the medication as it was all in the lining of my purse. They would be smart enough to draw it from the port at the bottom of the bag. I don't know a single person who is "wanting narcotics" that would just throw it away! Defeats that whole idea. You can't take or use something that is now soaked into a purse lining.

They decided to put me on a pain patch after that I told them that it doesn't work and only makes me high, takes away my voice and vision, and makes it to where I have NO balance. They told me other than oral meds that's all we could do so I caved and said I'd try it.

☆Oral pain medication scares me to do at home because the dose has to be a very LARGE amount for me to benefit and it scares the hell out of me.

At this point it has been a few weeks and I was having mental breakdowns, anxiety attacks, and panic attacks nightly. I felt so neglected, mistreated and scared for my health. I was having to call the on call nurse every night just to get an "OK" to take a Xanax for fear of getting yelled at.

☆I wasn't sleeping, because of the pain, my anxiety, and just being scared for my health that they told me to start taking .5mg of liquid Haldol twice a night. Along with 1mg of liquid oxy fast for pain at the same times. It wasn't long until I was running into thing with this medication mixture plus a pain patch. I was seeing the most scary pictures in my mind when I would close my eyes, yet not seeing anything when they were opened. Nothing I said made any sense to anyone, not even me. Then it brought on an episode of Tardive Dyskinesia. This went on for two days until I stopped everything myself.

To top it off I ran out of oxygen tanks and needed more ordered so I asked not once, not twice but three times and never got them. I was basically a prisoner of my house because I didn't have oxygen. Finally MY HUSBAND ordered them and it still took 3 days for them to get to me.

I finally got to the point that coughing dime sized amounts of blood, being over drugged, made to feel like a horrible person, and ignored I said screw it I'm going to the ER. I was diagnosed with psuedo and a severe exacerbation. I have one more week of IV antibiotics for the full three week stay. Which could have easily be avoided and fixed in the beginning if she would have listened to me.

I can keep going but this is already so long and really it is just more of the same about neglect, unprofessional actions, and ignorant behavior.

Please, speak up if you or a loved one are being abused or ignored by your health care team, hospital, or hospice agency. It should have been easy and comfortable. It should have been making my life easier when instead it made my life a living nightmare.

Deeply Disappointed,
   Sandi

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CFer isn't a bad term.

Ok, every other day I see someone complaining that when people use the term "CFer" that they are offended by the term. As I use the word often I feel the need to explain why and the reason behind the usage for me.

☆Keep in mind these are my thoughts and do not depict others ideas or thoughts but my own.

I have seen arguments such as, "You don't call someone with Cancer a Cancer'er. Why call a Cystic Fibrosis patient a CFer?" 

      •First off Canc'er' already has the er. They are also known as either a survivor or a fighter. 

    
Sorry, but we as Cystic's, also an unliked term, are not survivors. Yes, we are fighters, but sadly have not survived anything as of yet. Until a cure is actually found or they can cut CF out of us or they somehow change our gene mutations we have not survived anything. We are not going to be CF free as those Cancer Survivors, are now thankfully cancer free.

Another argument, "Adding an ER doesn't make sense to me." Let me break it down.
       •Nouns ending in -er
☆This ending is the most common. It's usually added to verbs to make nouns with the meaning ‘a person or thing that does something’, for example: builder, farmer, sprinkler, or beeper. The -er ending can also be used to form nouns meaning: ‘a person belonging to a particular place or group’, e.g. foreigner, biker, or racer. ☆

We as a community or a group if you will, fall under that category. CF is simply short hand for Cystic Fibrosis, which we all know. Adding the "er" makes the statement that we are a community of people with a bond no one can ever have with us, but with one another.

It isn't a title or a branding on any of us by saying "CFer's". It doesn't take away from any of your accomplishments or who you are outside of being a CF patient. To me saying CFer or Cystic is simply more personal to say than the formal version, Cystic Fibrosis Patient. I feel like that is too technical and robot like.

Last argument is that the "er" is supposed to represent the word "sufferer". I disagree with this 100%. I don't believe that any of us are sufferers of our disease. I believe we are fighters and making strides even if it hurts and is a bumpy road.

☆We are amazing, women and men, CF is only part of you not all of you. How you interpret things is all on you, but if it is always in a negative light and always being offended in someway it will only make this journey harder for you in the long run. 

Focus on the good things and not on such a silly thing like a word grouping all CF patients together as a group. A strong, beautiful, amazing, and inspirational group of people.

It also isn't saying you are the disease first and you second. I'm not sure where that idea came from either. When speaking about a wide group of people we are all grouped by a phrase or word, no matter who that group may be. There is really no other way of addressing a large group without using the titles we have at hand.

To say that a simple short hand version of your disease is insulting is absurd to me. I am sorry if you disagree, but hopefully this blog may have helped to understand it a little more as to why it is used.

Lets all just be mutants and form the new X-Men,
    Sandi

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Let's talk about Death!

Terminal, life threatening, premature death, slowly dying, and end stage all mean the same thing, your life and disease are slowly getting worse and death is a lot closer for you than say a "healthy" person. The other thing they all have in common, is no one ever wants to openly talk about it. Time to change that!!!

☆I wrote a similar blog a year or so ago about my thoughts on Death and CF in the way I view it for myself. This one is more geared towards the idea of not letting the death conversation be put on hold out of fear or sadness. 

In life we are promised one thing and that is, death! You may never get to see love, children, happily ever after, or a white picket fence with a dog and kids in the yard. Sometimes you get a glimpse of life and it's over. Sadly, there is nothing that can even be done about that. No parent should have to bury their child, but with diseases like CF they make that a little more complicated and heartbreaking.

☆When I was growing up, Cystic Fibrosis was considered and to me still is a terminal disease. It was for the longest time a death sentence to children with "salty skin", which is NO longer the case thankfully. Now, the debate is out there on terminal or not and I don't feel like getting into it, so for this blog and my personal sake, let's just say I am terminal.

When I was growing up I was never misinformed or deprived of what CF really was and what could and would happen. My parents told me what was going on with my lungs and my life and never held anything back. For that I am so thankful for the parents I am blessed with. Honestly they explained death and how it worked. I sadly saw it first hand when my grandfather passed and one of my cousins with CF who died after her lung transplant. So, from a YOUNG age I was ready and aware of death.

☆I had my funeral arrangements in mind, since I was roughly 8 years old. The songs to be played, the way I want to go, the people who will be there, I want a guest list. I knew it was going to happen and wanted my last goodbye to be perfect. And I still do!

As an 8 year old child that is something you should never plan, think, or know about, however, I did know about it as it was and is my life. To me that made the world a whole lot more understandable. Growing up fast is something a Cystic has to do, sadly no matter the age you learn quickly that life isn't something to mess around with and you should never take it or the people in your life for granted.

☆I am sure we've all heard the "you have ten years" "6 months", "don't get attached or make plans". That is all a bunch of smoke and doesn't have any relevance to any of us, especially now in 2015. Although the reality of death is still very possible and real.

I can't say I don't think about it once a day or even more, because I do. I constantly lay my head on my pillow at night and think, "will I wake up?", "will I get to say goodbye?". I can't help but think these things and I am sure I am not alone in the CF community along with all of those who have terminal diseases. I guess you could say I am just not "afraid to die" or am I scared of death, which I have been asked alot throughout the years.

We all die, I can go tomorrow in a car wreak. This is reality. However, having it as a reminder everytime a coughing fit hits either one or more times a day it becomes an eye opener.

☆I took a class in college that was called, "Death and Dying", terrifying class actually. However, it hit a lot of things right one the head about this topic and how people are squirmish to talk about death. It shouldn't be like that.

I think it is somethig we should openly speak about, sick or not this topic shouldn't be so taboo. Will it hurt when I go, I don't know and I hope not. Will my loved ones be upset, I'd like to think so. That doesn't change that it should be talked about as naturally as anything else. Talk to your loved ones about what you want and ask questions about death. Tell them how you want to say goodbye for the last time. Be open about it and it honestly will make it easier on everyone involved.

☆Me, I want a Kings/Vikings Burial and in most states it is illegal, although I have found a loop hole. Which is why when the song, "If I Die Young", by the Band Perry, was released I got cold chills and to this day cry every time I hear it. I swear she read my journals growing up. I want to be surrounded in roses, sent into the sea with a love song, that my friend Ashley sings for everyone to hear, and then set on fire to become one with the earth. I believe and know in my heart, I will come back as rainbows and butterflies to prove to my loved ones I am watching them and I am ok.

 

Never hide the truth of death and the facts from your little CFer's. As hard as it is for you they can't be blind sided by the topic later on. By no means do I think you should harp on it and talk about it all the time. Only make small gestures at an appropriate age to see where their mind set is on the topic. Then brush up on it once a year or maybe 6 months until they understand 100%. Don't terrify them with the topic and make them afraid of anything about dying or CF. It is just more difficult to swallow and cope with when you don't mention it until it's too late and they are at that point and have no idea what's going on.

☆Hopefully, with all of these new drugs for CF we will be living even longer now than before. I have faith that CF will one day be controlled by these new drugs and treatments and will help to prolong lives. Just remember everyone one is different and these new drugs are mutation specific at the moment and not everyone qualifies, so the death talk does still need to happen.

The truth hurts sometimes but it's needed,
  Sandi

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