Numbers Can Mean ALOT!

97 and 30 seem like random pointless numbers, but not to me. To me they are two of the happiest numbers that I can count to at the moment and I hope that I can keep on counting up.

It's been 97 days since I've fallen asleep to the sounds of a hospital bed and an IV pump. 97 days since I've had to call and tell someone my name and room number before I'm able to eat. 97 days have passed without me needing to call a nurse for extra treatments. 97 days where no one comes in my room in the middle of the night to check the pulses in my feet and wake me up to ask if I need anything.

All the while it has also been 97 days since I moved from WV to SC! Something if you would have told me 97 days ago, would make me feel ten times better by doing nothing, I'd never believe you!! Yet, here I am feeling like I did in college over 8 years ago before I was this sick.

Now, within those 97 days it's now been 30 days since I've needed to carry around Raymond, my oxygen tank in over 2 years. 30 days without pitty looks and stares from strangers as I walk by. 30 days WALKING around Walmart without needing the scooter. Now, I'm still needing to push a buggy to get around, but I'll take that over the scooter. It's been 30 days without hiring the buzz of my oxygen machine while I'm trying to fall asleep and 30 days without choking myself on an oxygen tube leash!

Of course these two numbers are accompanied by two other numbers my FEV1 (lung function) when I got here 97 days ago was at 17% and now 30 days ago my FEV1 (lung function) was 24%. I can not wait until my next doctors appointment where I'm hoping it has gone up even more.

💥With all of these improvements and numbers I'm throwing around you would think I'm on one of the new Cystic Fibrosis meds or did the steam cell thing, but you'd be wrong. Within the time we've lived at the beach I've done very little different than what I did in WV.

I've added small amounts and I mean maybe 3 drops once a week, of the Detorra "Breathe" blend  essential oils, to my bath water. I've upped to amount of hypertonic saline from once a day to twice a day and I've gotten my meds on a better working schedule. The biggest thing I've come to realize that did change, was after about two weeks of living here I slowly stopped taking prescription pain medication. I noticed I wasn't in as much pain here as I was in WV for some odd reason. Which can be a huge reason and explanation as to why the turn around, but I'm not sure to be honest.

💥To me whatever it is the ocean and the salt in the air, magic, be it a miracle, someone watching over me, or whatever it may be I'm so thankful for it! I wish I knew what it was keeping me from getting sick and needing oxygen, but I simply have no clue!

Hoping it just gets better,
  Sandi
For more information on CF and my new health follow me on Facebook.

Changes in life

Have you ever just thought, "This is my life?"

Lately, I've been living in the past remembering a time where walking was easy. Parking at the very far end of a parking lot didn't terrify me. Going into a store and needing a motorized scooter to get around wasn't a necessity. Sometimes, I just wonder what it is that I'm supposed to be gaining from this experience.

For as long as I can remember medication was a part of my everyday life. The stale smell of a cold hospital was something I've known all to well and it doesn't bother me. In fact it's actually comforting. Having relationships with nurses is something that is normal for me and that's perfectly ok. I mean I don't know how life would be if it were any other way.

I do know how life was when it was just the hospital aspect that made life complicated and not the worsening of my health. I mean I'd have a doctor's appointment every 3 months and an admission roughly 4 times a year for 2 weeks. In between all of that I was healthy, to a point. I could walk for very far distances without supplimental oxygen. Hell, I could even run a little. I was active in life and if I wanted to go somewhere I went. I didn't need to grab oxygen tanks. I didn't need a bag of medications just to go to an amusement park for the day. I never thought about the walk up the ladder/hill to the water slide and now I fear it.

🎖I feel like I've been in training my whole life for this level of my disease. I feel I should have an extra man by now or some gold coins as I've made it through a few bouns rounds. However, this game just seems to get more difficult and sadly it doesn't have much of a reward.

Don't get me wrong, yes I am here and yes, I am living life to the fullest that my body will allow. That in itself is a huge reward. Yet, what I've lost along the way seems like such a slap in the face and sadly, no one will understand unless you've lived a life remotely close to mine. As we are all different and look and feel about life differently.

When I think back of the things I've lost along the way in order to still breath each day, it truly breaks my heart. I've lost jobs, friends, holidays, vacations, family get togethers, sorority outings, weddings, walking with pride, and so much more. People always get irritated when you have to cancel last minute or don't answer when they call. It hurts so bad for me that I can't even begin to explain it, but it happens.

Each day I celebrate the smallest of accomplishments like literally getting out of bed, brushing my hair, or making my own bowl of cereal. When I used to do 2 photoshoots, a runway show, dinner with friends, all ending with drinks around a bonfire in one day. Now, I'm lucky to get out of bed and eat a meal with my man.

It just seems like the more energy this life drains from me the less I can do and the more I tend to lose. It's such a heart wrenching coin toss for me - To live and breath or to lose who I am and the life I once knew.

My glass is still half full,
   Sandi

For more about my life with Cystic Fibrosis, follow me on Facebook

Cyster, Sister, and Direct Organ Donation

"I believe in the fulfillment of self and will strive to contribute my share to the progress of mankind."

Sometimes you come across people in your life that you can't help but feel a strong connection to! For me that has happened alot in the past give or take 4 years that I've been doing my blog and focusing on CF awareness. I can't say that any connection is stronger than the other or better than the other. What I can say is that some tend to surprise me a little bit and hold a special place in my heart.

Growing up in a small WV town with Cystic Fibrosis it's normal to hear stories of other "Cystic's" who may be in your area or who is treated in the same hospital. Well, that is just what happened for me with Morgan Yoney. Although, before I "knew" her, as we have never met in person. I never knew who people were talking about just that this young girl who had Cystic Fibrosis and a double lung transplant was doing amazingly. I had heard about her fundraising and her selflessness to help others often. As most of the time nurses and medical staff keep certain patients in their hearts even after they have moved to another state, hospital, or sadly pass on. Normally, it's the ones with a sparkling personality and positive disposition in life.

🌟I'd like to say I'm that type of patient, but I have no clue.

Once I started my CF blog our paths crossed and I knew exactly who she was once she had told me she went to WVU's CF clinic.

🌟Now, I know how creepy that sounds, but it was more of a, "finally I can put a face and a name to this young CFer I've been hearing about for a little while."

Sadly, by this time her first transplant had already started to fail her and she was in failing health, but I guess I could say I saw a lot of me in her, as she didn't let that stop her. She was on a mission to do as many things as she can for others that I was in awe of this girl! The more I saw her posts and spoke with her I found out we have much more in common that just CF and our childhood Hospital. Morgan was and is my, Alpha Sigma Tau Sorority sister as well!

⚓Which just goes to tell you that AST is the best Sorority one can join!

Something just clicked inside my heart when all of these things came out about her and getting to know what a wonderful selfless young lady she truly is. That I admire her strength and will to live!! She deserved to be healthy, like most of us do, but this girl in my mind deserves it, because of how badly she is fighting for it.

Right now, Morgan is roughly in the same health standing CF wise as I am. We have a lot of similarities as I said even personality traits that we seem to share. She was last tested with an FEV1 of 19%, however, this was prior to a devastating hospital stay that was so bad she was even removed from the transplant list. Luckily, her will to fight and live her beautiful life was stronger than CF and it's nasty hold it has on us both! She was able to go home with a trek system for breathing and is now in the fight to find donor lungs. She is seeking lungs from an 0 Positive(0+) donor and because of her situation being so severe and so critical is asking for a, "Direct Donor Donation".

♻This is when someone who is a donor and is the 0+ blood type can sign their lungs to Morgan to assure that she is able to get lungs ASAP. As she is listed almost last after being taken off of the list during her last medical ordeal.

I know a lot of people have been unsupportive of this decision she and her family are making and the Internet is not a friendly place to be at times. The thing that people seem to be over looking is how many people die waiting for donor organs simply, because people don't want to be an organ donor. Morgan, like everyone on the transplant list, is fighting for her life! She has found a loophole that doesn't skip a single person, although, that is sadly how people are seeing it!!!

🌟I guess this is my selfish part of this blog.

At the rate I am at and our health standing being so similar IF I was on the list I feel I would most likely get the lungs Miss Morgan is needing, if not done with a direct donor. We would have both been set up with the same transplant team and hospital in PA. My decision to take myself off of the list makes me feel like perhaps she has a better chance at getting lungs that will benefit her alot more than they would ever help me. I know deep in my heart that B. Cenocapacia would have taken over a set of new lungs and would have been pointless for me. For her, they will be a breath of fresh air! She will have such a better life with the lungs that I possibly turned down!!

🌟Small secret, I have been struggling with the choice to not get the transplant since I made it, until I put it in that perspective. Even if not Morgan, which honestly I doubt my removing my name from the list a year ago this May is going to be the lungs she personally gets. It does mean that someone like her will be able to be breathing better and have a better chance than I would!

Look at the bigger picture sometimes instead of just yourself. When you pass on, why not be an organ donor? Just like money, your organs don't go with you when you die, in fact in some cases they get thrown away! That is a waste of what someone truly needs to stay here! So, what's the harm in giving life back to someone? Essentially, helping you live on through them!!

Supporting Morgan's Army,
  Sandi

For more information on Morgan, direct donation to her, or her struggle with CF join Morgan's Army on Facebook. Spread the word, post signs, share her updates, and if you are not an organ donor yet, change that and become one!! It's really easy!

For more of my journey, thoughts, and CF info follow me on Facebook! I'm pretty boring and not as active with awareness as of lately though. :)

Food & Breathing Issues

Normally when I'm hungry I can eat enough to feed about 4 people without blinking. Lately, my husband has noticed a connection between my eating and shortness of breath, so I did a little research and he was correct.

If you are feeling bloated or out of breath after a large meal it is not uncommon for Cystic Fibrosis patients. There can be a few different reasons that this happens.

☆I never thought to connect those dots until it was brought to my attention. Now, it's obvious to me as to what was happening.

Eating a large meal actually requires more energy to digest and of course energy doesn't always come easy to a CFer. Leaving larger meals to keep adding more pressure on your chest and diaphragm. For many, CF causes your lungs to take up more room in your chest when we begin to struggle. Resulting in air being trapped in the damaged areas of the lungs. Again causing us to feel out of breath.

So, how do we fix the issue and keep the calorie intake? Simply by eating several small meals throughout the day.

☆This is normally the case for everyone CF or not. It is better for your overall health to actually eat 6 small meals a day than it is 3 large ones. Of course with CF we are to eat extra calories high in fat, protein, calcium, and so on. So, don't forget to keep that in mind as you plan your meals.

If you require oxygen, make sure to use it while eating. This will help you get less short of breath and also help to aid in digestion.

Try some of these little tips if you experience the same thing and it should help a little or even make it not happen as often!!

•Stay away from those foods that can cause bloating like raw fruits and vegetables. Yes, you can avoid the healthy foods sometimes.

•Try to eat foods that you don’t have to chew as much like mashed potatoes or soup.

•Eat slowly, taking time between bites. There is no reason to rush through your meal, it's not going anywhere!

•Don’t rush off after you eat. Take some time to not only start to digest, but also to enjoy your family or friends. If you are alone just take some time for yourself before jumping right into your next activity.

•Once again, if you use supplemental oxygen, make sure you use it when you are eating!

Sometimes things that seem to simple to cause something medical is actually just that simple. I would have never put two and two together in this situation, because it seems too easy. Thankfully my husband pointed it out for me and now I've pointed it out for you!

Love How You Eat,
   Sandi

For more information or tips regarding Cystic Fibrosis or just my journey with it follow me on Facebook.

Comments: Insults or Compliments?

It's so complicated living day to day with a disease of any kind. It is even more complicated to try and explain a disease that people can not physically see or understand. People rarely hear the name of alot of diseases and when they do it's because of a celebrity or a TV show. Which is why when people say, "Oh, Cystic Fibrosis? I've never heard of it." Is alot better for someone to say in response to you telling them about your disease than, "Oh, the disease that the girl has on Bate Motel has!" When they are excited, because they think they know something about your disease. When in reality that little girl would have been in the hospital several times throughout the show if it was reality. Seeing her running with a wheeled oxygen cart through the woods is an insult to those of us who do have CF and do need oxygen to live. Not only that, but it is a poor example of CF and gives those who are blind to the disease false ideas of what to expect from Cystic Fibrosis patients.

Which has brought me to the conclusion that as a society all together we should stop questioning those who are sick with these smug and hurtful comments.

💊You must not be taking your meds right if you're still sick.
🙆AGAIN?
🏃All you need is exercise.
😷It's all in your head.
💉You take too much medication.
🚬Go smoke another one!
🎭Just take an antidepressant if your sad.
❓Aren't you feeling better?
🍴Losing weight will help.
💪Tuff it out thats what I do.
💄Put on some make up, do your hair, and change your attitude.
🍸Just have a drink and unwind.
💤You're just lazy.
🌅Get out of your house and shake it off.
🍓Change your diet and you'd never be sick.
♿You have both legs don't take a handicap space, you don't need.
👓But, you don't look sick.
😪 You sleep too much, that's your problem.
🏥You're in the hospital, AGAIN?
💰The doctors are lying to make more money.
🙌You just want attention.
☔It can't be as bad as you act like it is.
💩It could be worse be happy it's not.
🃏Stop playing the sick card, we all know you're sick!

Now, alot of people seem to think that some of these are actually helping or are considered, "uplifting" comments about a person with an invisible disease. However, it is not a compliment when someone says, "You don't look sick." Or "It could be worse." All this communicates to me is that you don't believe I am sick and I am supposed to take comfort in the fact that someone is worse off than I am. Well, news flash knowing someone somewhere is worse doesn't make me less sick. Looking in the mirror and seeing a pretty face doesn't make me any less terminal.

I'm tired of all of these sayings, the stares, the lies, and the hurtful words. Being young and needing a wheelchair and oxygen to get around Wal-Mart turns alot of heads and makes it so hard go about your business as normal. It shouldn't be that way! I know that people will pitty me based on my health and sadly that's always been then case. Yet, keep these things to yourself. Sit and think about what you are going to say before you actually say it!

Think before you speak,
   Sandi

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Update!!

This was a status update until I noticed it was forever and a day long! So, here is my medical "update " or should I say my medical cluster @$*!

Ahhh setting up a new everything and finding the right doctors has been torture the past few weeks! I feel like Hospice should have helped me set everything back up when they discharged me, instead of just never seeing or talking to me about anything at all.I feel like the entire hospice care system as I was seen by two different ones just dropped the ball with me all together. 

I have yet to speak to, Amedisys Hospice about them discharging me with the actual company. I was informed when I was discharged from Fairmont Regional Hospital by thier social worker that, Amedisys Hospice was not going to pick me back up as a patient.

Due to me not being, "Hospice minded". Which she explained to me just meant that I was still wanting to receive IV antibiotics to maintain my health at this level, instead of just letting my CF progress and worsen. I called hospice after that conversation and was ignored several times. I have still yet to be told by them that I'm no longer a Hospice patient.

♡Keep in mind my health has NOT changed from when the CF team first put me in Hospice Care. I have been able to maintain my level of health only, because of me wanting and getting IV antibiotics when I felt a flair coming on. My goal wasn't to die, I don't think that is anyone's goal! I am sick of being sick and so tired of being tired, however I'm 28 years old! I'm not ready to hang out with my Grandpa just yet! So, yes I'm still fighting to live!

The first issue that came from this BS is having to fix my insurance after being terrified when I was told I no longer had ANY type of insurance. Luckily, it was fixed last Wednesday, five days ago, but not without leaving me medication-less for two weeks.

♡I tried to get an appointment with the doctor that had me as a hospice patient, because he is a PCP in my home town as well as a hospice doctor. I figured it would be so much easier for him to be my actual PCP knowing everything I am going through and that my health is still just as bad as it was 3 month ago. They were setting up an appointment date for me with him and then couldn't be any more rude after I said I was discharged from hospice. With a very quick and snappy reply, "Oh never mind I thought you were still with him in hospice, no he doesn't have any room for a new patient!" Really? Really, no room? Ok!

WV had it as if my primary insurance was still with Amedisys Hospice and WV medicaid was secondary, so they wouldn't pay for anything until Hospice discharged me in writing! Of course the Hospice company was giving me a hard time with not returning phone calls and being unbelievably rude, complicated, and unprofessional when I did get ahold of them. Thankfully the insurance part is now fixed and is under control.

I now need to get an all new PCP, Pain, and GI doctor. I have to re-establish care with the Pulmonary doctors up at WVU Hospital or decide if I want to go to another hospital that specializes in CF near me like John Hopkins or UPMC. I just hate the drive and the fact that I'm rarely visited as is when I'm hospitalized now and WVU hospital is only a 30 minute drive away. Both of those choices are two hours away from home talk about being alone.

♡I have so much on my plate and so little know how when it comes to figuring any of this out. Needless to say tears of frustration is all I've know this past week. I will get through it and get it right, I just hope it's sooner than later.

BUT, I am feeling ok right now and WILL be home for Thanksgiving!!! At this point that is all that matters to me!! I do have a LONG day of running around and making phone calls tomorrow! It seems like I have the world set against me, but this girl will be with her family AT HOME eating yard bird, on a table and not in a hospital bed for the first time in 3 years this Thursday! That is all I need to keep me going at the moment!!

☆♡My entire family have all decided they never want hospice around them when it's their time. I'm not sure what it was or why I was treated or should I say mistreated by the hospice system, but it HAS to be a better experience with other people. Maybe I'm just a terrible patient or something I'm not sure. Maybe it was my age, my looks, my positive personality, my laughter, and smiles. Maybe it was CF and they were confused with it. I'm not sure what it was, but I pray, and I don't pray, that I'm the ONLY person that's ever been treated like this!!!!♡☆

Confused beyond confused,
   Sandi

For more information on my terrible not so fun roller coaster ride with Cystic Fibrosis follow me on Facebook!

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