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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CF, Drugs, and Rock n Roll!

You know it's funny that I've always said I'd never make a blog on narcotics and CF, and here I am doing just that. This may be a bit wordy, I apologize now!!!

For a little back story let's go back a few months maybe even years. As I progress in my disease being "end stage" and no transplant option, my lungs get worse. My breathing gets more complicated and the pain associated with it continues to climb. 

One thing I have always been proud of is my way of pushing through this pain and only using pain medication during hospitalizations. Sadly that needed to change recently.

☆I would push through the pain all of these years, because I pretty much had to and it's wasn't as bad as it is now. My particular CF makes it difficult to absorb ALL oral medicine properly. Not all CFers have this problem, which is just another sign that we are us first and the disease second. That problens makes it scary to double or triple pain meds at home in hopes that they work.

As many of you follow me and know my ups and downs as of lately, you know my health has made a downward spirl. Making the days at home harder and harder to cope without pain control of some sorts. Long story short I was proscribed home IV Diludid along with home IV Benadryl, as I have an allergy to the Diludid.

With this combination at home I have been able to have a better quality of life and could even lower the amount of oxygen I needed do to less pain. Taking Benadryl regularly has acted as a bronchial dilatator opening my airways making it possible for me to accomplish what I try to do. It has also had an effect on my mood and with the everyday activities I was having such problems with. Like showering alone, cooking, walking my dogs, going to the mall alone, caring to do my hair and makeup, and so fourth. Of course I still needed to wear my o2. No miracles here!

☆This combination of a small dose of narcotics and an antihistamine has been a game changer in my life these past few months. One that I would love to figure out how to do a medical study on the matter. More so with the side effects of the Benadryl and my lungs.

Here comes the monkey wrench!!!! My life is CRAZY. Things happen that would never happen to anyone else, but me. I have found myself in so many unbelievable situations that if I wasn't there and there wasn't some type of report of these things I would not believe them either. So, that being said I have needed my meds sooner on some occasions do to out of town trips, doctor appointments (before I found out the infusion company was in my town), court dates for one of those Sandi only situations, a nurse jumping the gun, and hospital stays that left me with them being thrown out while I was hospitalized. Another long story.

☆Trying to make this a short story bare with me here.

Last Friday I was discharged from the hospital! Discharge papers in hand, PORT pulled, street clothes ON, ride at the door. A doctor came in telling me how to follow up with blood draws for the levels of the IV antibiotics at my PCP ' office. She told me that everything was good to go. Before she could leave my room another doctor came in and said, "We pulled your discharge you have to stay here until Tuesday to get your IV antibiotics approved through your insurance for home health. The fact that it was the holiday weekend and the end of the work week they wouldn't get to it until Tuesday."

I was PISSED! Here I stand discharge papers printed and signed in hand! Being told that my health didn't warrant urgency to those who work 9-5 Monday through Friday at the insurance companies, because they had a holiday weekend. Staying an extra 4 days could jeopardize my health being in a hospital environment after I started showing progress, which I didn't want to risk!!! The doctor then informs me if I didn't stay I would be leaving AMA. Well, I was angery, upset, and irritated. I had my discharge papers, so I left! That's when all hell broke loose.

What I did not know was that the infusion center had gotten the antibiotics approved that same night at 6pm. I, however, was never called or told that they had gone through. I thought the antibiotics wouldn't be worked on until Tuesday as that is what the doctor had told me. So, I waited until Tuesday and no call. Wednesday rolled around and I called and was told I was no longer allowed to receive medications from them because they believed I was "Lying" and trying to "doop" them for the pain medication. Which, I can assure you is not and never has been the case.

I then later get a call from my Dr. at Ruby Memorial who proscribes those medications for me, knowing I need them. Knowing I am not a drug seeker. Yet, he has now decided to not proscribe anything else for me and will be making a note stating I have a "history" of narcotic drug seeking. I was told to go to Chestnut Ridge for addiction issues other than that he was no longer working with me. 

☆I'm not addicted to them, so that wouldn't even help. I admit when we first started this course (Back in Feb.) I was having a small problem, but I pushed through and fixed it with the help of my husband and an amazing friend talking with me.

☆Here is what all my babbling is about right now, sorry! I said stay with me.

Because, I have a life where my roller-coaster derails almost every day. I have things that go on that I can't explain and it may sound fishy, sadly I can prove every single thing that happens in my crazy ass life. But, because of a misunderstanding of a doctor telling me that me staying over a holiday was more important, then saying I went AMA when it really wasnt, and calling me a liar I am screw for pain control!! I can NO LONGER get any type of pain relief. No one will proscribe anything due to a "history" that I now have losted and do not agree with or is it true.

What am I to do in a few months when my breathing is worse and my lungs are worse? I will have to suffer in pain with every breath, every sneeze, cough, and yawn. Because, of something I am being accused of based on my hectic life and circumstances being shitty. How can they deny someone with legitimate reasons to need pain control based on BS, yet those who are doing what I'm being accused of get their meds like clock work.

Irritated and Disappointed,
  Sandi

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True Love

Laying next to the most amazing man, listening to him breathe, and looking so peaceful, I can't help but reminisce to the passion I was once able to show my husband. The hunger for his love that ran through my body is still there, but the actions are nearly impossible.

For years I couldn't stop myself acting like teenagers half of the time as soon as he'd walk into the room. Now, I feel like a 97 year old woman with a broken hip. The rush is there, the desire is there, the heat has always been there. The only thing not there, is me! I can't even walk to my dresser any longer let alone try to have relations with my husband.

I find it interesting and very depressing how quickly things can change. What once was a head over hills get a room type of passion is only possible for one of us. Sadly, it is no longer me. What we have is a beautiful love for one anothers soul, the person we have become, and our love of life more so than our bodies.

☆Trust me I know that the love and the bond we have for each other is stronger than anything in the world. I cherish our relationship and our love more than I think he even knows. In reality this situation bothers me more than it bothers him.

As I get older and this disease takes a stronger  hold over my body, I find myself longing for those days of being healthy. Seeing him laying in bed beside me cuddled up with all three animals makes my heart skip and tears fall from my face. I can close my eyes and remember his arms pulling me tight and we would make love until the sun came up. Feeling his strong arms around my waist and seeing the look in his eyes just takes me away to another place and time. A time where I could breathe and nothing could stand in my way when it came to anything, not just the topic at hand.

My diagnosis was bound to eventually take over every aspect of my life. I just thought I had a little more time. Now, it has finally taking my capability for a love life away. From what was at it's highest peak down to nothing at all. I knew this would happen eventually as each year everything gets harder and harder to accomplish. I was only hoping that it wouldn't happen at 28.

I was hoping to have a few more years left before I would be where I am today. Sadly, CF is finally controlling the spark that started years ago for the man that I fall deeper and deeper in love with everyday. The man who can turn me on with only his amazing smile.

☆The worst part is that he is getting the short end of the stick and it KILLS me! I feel like half a woman. Like I can no longer please or take care of my man and it hurts so much. CF has taken a lot from me. The ability to work, drive a car, go to school, make it to events, concerts, just about everything and now this.

All of the passion that once ran through my body for this man like lightening striking down on me has been taken away so quickly. All because of the air I breathe or should I say the air I can no longer breathe? The love and the desire I once had before is still there and stronger than ever. I just do not have what I need to act on these feelings and it is frustrating and depressing more than anything.

How can this be? How can it take away my ability to physically love my husband? We would lay in our bed at all hours of day, legs intertwined, bare skin on skin with a hunger for one another. There was nothing that could stop me from touching, kissing, or holding the man of my dreams close to my body. That is no longer the case and has sadly been left on the back burner. Thanks to Cystic Fibrosis. Each day it eats at me a little more and there is nothing I can do! Nothing I can say. Just nothing!

Now, don't get me wrong we still love one another more with each day! The passion for one another is still there especially for him. I am just no longer able to act on those urges as I would love to. I used to have so much energy and planned so many romantic nights just to make our love life perfect and amazing. Now, I am lucky to kiss him more than twice a day.

The fact that my feet barely hit the floor anymore, my hair is never brushed and I am always a mess. I know that I have a medical smell, I never wear make up and am in the same pj's for days at a time. My body is rarely bathed, scared and ugly, and now I am down to 99lbs and my weight just keeps dropping. What do I have to offer this incredible man?

I am nothing as what I once was. I am not the beauty he met and fell in love with. The model I was long ago has faded into the depths of my memory and staying in the past. I am so ashamed of how I look and even sickened for who I see in the mirror each day. I hide in the memories of the way I used to look and ignore mirrors as much as possible.

☆Ours is a love that burns inside our hearts that will never fade away. I just wish it didn't have to be this way.

I have begun to blame myself and even starting to hate this part of who I am. The medications, treatments, and hospital stays make me weep in bed every night. I can feel his breath upon my skin and my body begins to shake. My heart starts to race and in my mind I am that young, healthy, energetic, sexy woman I was when he first fell in love me. I want so badly to roll around in the sheets with him, laughing and running around the house in nothing but his tshirt. Just for him to catch me, lift me up, with his hands on my body and my lips on his skin!

☆I can't even imagine what that feeling is like any more.

This is a pain that no one knows, no one but me. It hurts worse than any surgery, tattoo,  or infection I've ever had. How do I explain it all to him? How do I explain it to myself at all when all I see in myself is a sad shell of the woman I used to be.

Instead of being caught up and tangled within each other, I am wrapped up in oxygen cords, caught up with medications every 4hours, and can hardly make a move on my own. My body so frail and weak, I have a coughing fit with every breath I take, and my life has become so meek. I was once a beautiful woman with passion that ran so deeply and only for him!!

This disease is so ugly it is so cruel and it doesn't care about your plans or who you are. It doesn't take mercy on your love life, your personal life, or your goals. I never thought I would be in this boat and feel this way at 28.

To understand what it going on would be impossible unless you are in this situation. All I know to do is smile at this amazing man who has devoted himself to me. Pray that he doesn't resent who I have become, in turn making him the man he is today. It makes my skin crawl at the fact that he is now my caregiver more so than my husband and lover. I sometimes feel as if he thinks of me as a burden. As he is the one who has to be both the man and the woman within our house hold. Taking care of the animals, myself, the cooking, cleaning, laundry, working double shifts to pay bills, grocery shopping. He does it all without a complaint and still loves me. He truly is amazing and I don't deserve such an amazing man.

☆I sometimes worry it will be too much for him and he will leave. That is my biggest fear at the moment! Not death, not sickness, not surgery, or lack of friends. I can't lose the man that brings me the sun and the moon, but if it was me I can't say for certain that I would have stayed as long as he has. Only true love and devotion would make a man stay with a woman like me. Going through all of this with him makes it easier on me, but I worry so badly he will eventually want someone who can do everything that I can not. Domestically, physically, and intimately.

So thankful for true love and devotion,
   Sandi

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Jealousy

In this life there are so many things that people are jealous of. Be it someone's physical appearance, wealth, love, education, or talents. You name it and someone somewhere is jealous of something in your daily life. Although, we are human and can be jealous for multiple reasons, try to find a way to turn that jealousy into a better you. Strive for the best and be true to yourself. If you can admit what you are jealous of in this life you can change your way of living and be thankful for your insecurities.

Me, I am jealous of the women who have sex once in their entire life and become pregnant and then they sadly don't even want the, "oops" baby. I am jealous of women who can get gifts for their loved ones, because they have money. Which then leads into my jealousy of those who are able to hold a job and keep on pushing to make an honest living. I am jealous of those people who have perfect lungs and choose to smoke!

☆Yes, you read that correctly! I am jealous of those who have amazingly healthy lungs and mistreat them. It is irritating seeing people take something so precious and poisoning one of the most important organs, for a terrible addiction. Taking their lungs for granted and never even sitting back to think about how lucky they are that they had healthy lungs.

I am jealous of those who can climb stairs and walk a mall without having the take long breaks to catch their breath or to stabilize their oxygen levels. I am jealous of people who have never had to take medications or do anything medical. Better yet, those who have never had to spend the night in a hospital! I am jealous of the CFers who have 60% or higher PFT's just to see 20% pop up on the screen next to my name.

☆Don't get me wrong I am so happy and proud of you, but I can't help but be irritated and a little bitter by seeing high numbers while my dwindle down daily.

I am jealous of the strength my family and friends were forced to have when it comes to this disease. As I know these 27 years and especially the past few months have been hell, they have all been there to support me. Sometimes I wish they would break down too, so I know for sure I am not terrified alone.

I am jealous of the Cystic's that can have a lung transplant with a good odds and a chance of living longer. I am jealous of those who have a huge following for "awareness", when all they do is post selfies with oxygen on using generic quotes they found online in a Google search. While I aim to educate, give advice, and share my life with everyone. The raw story of my life the good, the bad, and the ugly to only have a hand full of people who know my name, not just the blog or the "Behind the Smile of a Cystic girl".

I am jealous of those women who have no scars and can show off their cute flawless belly's, while I am too worried I will sicken people with mine. I am jealous of those who can just get into the car and spontaneously go wherever their heart desires, without having to properly pack meds, snacks, and nebs. Or having to make sure you have enough oxygen tanks to last however long you plan to be out.

When it boils down to it I am even jealous of who I used to be. The person I will never be able to be again. I long for the days without oxygen and miles I could walk without being winded. Climbing stairs and holding down jobs. Not having to stay home most of the time, because I have no energy. I miss the girl I once was and boy am I jealous of her!

This world is full of jealousy, hatred, and flattery, it is figuring out which one will benefit you better as to which one you personally believe in and think about.

☆I truly took my "good health" for granted and never saw this situation in my future. Who would? Always cherish each day you have, because one day you may not get to do it again.

This disease leaves a door open to be jealous of a lot of things and people. Although, I honestly don't think that any of that is a negative thing. Knowing I am jealous of these things makes me appreciate what I do have and makes what I can and have done that much more meaningful to me. It helps me realize life for some people comes easy and it takes a mountain for me to succeed. I am very proud of the mountains I have moved in my life just to say, I did it and I am here today.

☆So, never be ashamed to be jealous of someone or something for any reason. Just know that you can push yourself to be the best you that you can be and you never know maybe someone, somewhere is actually jealous of you. 

☆Which is the highest form of flattery and I mean that. It's not just a smart ass comment.

Jealousy is love,
   Sandi

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