Hydration & CF

We're always told to stay hydrated, but it's not always that easy when we get busy. We tend to forget the simplest things like drinking enough water or even to put on lotion for the day.

🐡When you have Cystic Fibrosis, it can be difficult to tell whether or not you are truly dehydrated or if you were just having an issue related to our sweat glands making us lose a lot of our salt. So, it is tricky to tell if we are in fact, dehydrated.

⚫Here a few ways to figure out if you're starting to get dehydrated and what you can do about it.

The first signs are simple, when you are talking to someone and all of a sudden it seems like you're eating sand, that's a MAJOR tell to take in more water. If you're thirsty use common sense and drink something hydrating.

☡Pop (soda or coke depending on where you are from), alcohol, and energy drinks will all dehydrate you.

Chapped lips and dry skin are the two signs that are the easiest to see and feel when it comes to being properly hydrated. When you notice either issue it normally isn't a severe sign of dehydration and can be corrected with moisturizers and a few extra glasses of water or a nice cucumber salad.

Not so common signs of dehydration, that i tend to get to are weakness, dizziness, fainting, swollen fingers/hands, stiffness, confusion. All of these separate from one another can be many medication side effects, but if any of these symptoms come together with nausea, vomiting, and or diarrhea you need to grab a watery snack, like watermelon and Gatorade.

🏳Even if it is something else healthwise sneaking up on you, treating yourself as if you need more H20 won't harm you. It will actually help you, no matter what your underlying issues are.

A visual way to stay alert is by watching your urine. It should stay a pale yellow, darker urine is a sign of needing more liquids.

🚑Of course if your symptoms continue to get worse, you have a temperature over 101°, or your breathing gets more difficult ignore me and get to a hospital. Please, do not take dehydration lightly, as severe dehydration CAN kill you. I'm not saying this is going to happen if you're dehydrated. So, don't panic when you get dehydrated. Just take it seriously.

Most of the time when you eat you don't think "I wonder how much water is in this meal". Just remember that fruits and vegetables contain 80 to 98 percent water. I know, they aren't as tasty as chips and chocolate.

🍉Foods containing water are watermelon, strawberries, lettuce, cucumbers, tomatoes, beets, carrots or celery. Adding them to a meal or snack is one of the easiest ways to improve hydration without drinking a ton of water.

We don't always love water as it has no flavor and we love flavor. Plus, if you're me water has to be almost frozen cold for me to drink it. There are several things you can drink that will keep you hydrated and have full flavor.

☕Starting with Gatorade or POWERade, fruit smoothies, skim milk, coconut water, and some even say coffee is a good way to stay hydrated (not a whole pot of coffee.)

Rule of thumb with staying hydrated is roughly 20 cups of water a day. This does include the water contained in foods and the water in your system already. So, it's not as much as it sounds.

💦Now, that I feel like Bobby Boucher, go grab some high quality H2O and stay hydrated.

Made of water,
  Sandi

For more information on Cystic Fibrosis, my life, and health tips follow me on Facebook.

Dreadfully Ashamed......

Odd, how hearing and song can inspire you to share your troubles, your struggles, and your deep dark secrets. The key line in the song literally is, "My drug dealer was a doctor" and man do those words ring loud and clear. So, here's to you, Macklemore....

As I sit here in tears contemplating if I should share this or not, I'm faced with the fact that I swore to be honest, be true, and be raw with this blog and all of you. When in fact I've not been honest with my damn self for almost two years and it's killing me. I try to justify and say, "You really were in pain", "you ARE terminal", or "It was prescribed by a physician they know what thy are doing." Right?

When in reality, you can't be sure that it's YOUR best interest they are looking out for.  

💊I've never done drugs that were illegal. I've always taken medication from a doctor and that was why I was justifying my issue. It wasn't until I almost killed myself in April, that I realized just how addicted to IV Dilaudid (Hydromorphone), I really was. It wasn't until I stopped taking it and didn't have it on hand that I knew I was an addict and didn't come to grips with it then. Yet, every time I heard the name of the drug, I get chills and have the dark side of my soul creep out of my head saying how badly I'd like to have my hands on a dose.

📍 I look back and see all the pain I was in and the horrible things it put me through, yet I know if I was hospitalized I'd ask for a dose or two. 

I know my family knew what was going on, but I don't think they ever knew how bad it really was. Well, until now I guess. The only person who saw me in such a bad state of mind was Tyson, and I could never imagine what he had possibly going through his head. 

❤He is a amaziny man to stand by my side and hold my hand through it all. I'd hate to think he thinks half as bad about me, as I think about myself.

I'm so hard on myself now looking back, yet I got out of the worst parts of it. The cravings are gone, to a point. I no longer shake, jerk or sweat for no reason. I no longer search for ways of making sure my prescriptions were filled. So, when you think about it the worst part is over and the hardest part has begun.

I was to a point that the act of rocking back and forth on my bed, dripping from sweat yet shivering from being so cold, became a feeling I was getting used to.

💊 I'd cry and scream searching for ways to get Dilaudid or ANY pain medication. At one point I searched high and low just to have pain meds into my system, if my script was out too soon. 

I thought about contacting the people who I knew were into hard core street drugs after doing search after search on Google, of other things that are able to give you the same feeling that Dilaudid did. 

🏳Thankfully, I never did act on that thought. Mainly out of embarrassment and the fact that I can't mentally do anything with needles.

Maybe it was my way of dealing with everything going on. Maybe I was trying to cover up a fear of dying young. I know after a while I wasn't needing pain medication to mask or fix my actual physical pain. I mean at this point my pain was/is just like breathing. 

🖑🖐After all they go hand in hand. So, I know I was taking the medication for a mental escape.

Escape from what I'm not 100% sure, but an escape regardless. The funny thing is no amount of medication can take you out of reality, especially when that medication wears off and you no longer have it. Then all that hits you is regret, hate, sickness, confusion, and sadness. 

People ask me all the time what has changed that has my health improving so much. Really, until right now, I've not been completely upfront. I know that 70% of it is in deed the move to the beach and the salt air. However, I'd be willing to bet that 20% is the fact that I literally gave myself a heart attack, via an air embolism, from IV diluadid TWO days after being in SC. I then stopped all pain killers at home and haven't touched them at home since April 2016! I'd say it's safe to say the other 10% was getting away from the hospital where they and I quote "were waiting for my lungs to just give up". I've also been using the essential oils "breathe blend" and lavender to stack the deck, I believe that would be the full reason for my insane health change.

💦So, salt air from the ocean, getting away from a toxic hospital system that literally gave up in my health, and stopping the narcotic dependency and addiction. All while adding oils to help with stress relief, which lets face it I need!

I was disgusted with myself and my choices. Ashamed, disappointed, upset, lost, and hurt to be honest. I felt like I was weak to allow myself to stoop to such a low. 

When in reality, I was being pumped full of this pain medication by doctors when the only thing they cared about at the time was IV Benadryl and not wanting me on THAT, really?. When my mother would mention to the doctors they would say, "she's ok, we will address the issue if it gets bad." Yet, they never did address the pain I was having either mental or physical. They just kept increasing the Dilaudid dose and not really doing much.

It wasn't until it was too late and I was already addicted that they gave a damn about my well being vs. the addiction. So, once I was hooked on Dilaudid they decided to then just cut me off from the medication they have been pumping into my veins constantly for about a YEAR and a half. In hopes I'd give in and go to the Suboxone clinic. Making life very difficult and leading to be getting sloppy causing an air embolism with my last IV dose.

In my opinion it was to pad their wallets a little more and with state and insurance money to boot. 

💉Why they ever sent me home on IV pain medication I'll never understand. Maybe they had an agenda, maybe I'm reading into it wrong and it's all on me. Either way something needs to change. These drugs are killing so many people, ruining lives, and destroying families. 

No, the drug isn't solely at fault it's a tango and without the prescriber and the patient the drug is harmless. I take responsibility for getting into it that deep. I am also taking responsibility for trying to help those in my situation. 

Sadly I know I will most likely lose respect and followers with this blog. I know my family will probably think less of me. However, I feel that this is something that needs to shared.

Thankfully, when I gave myself that air embolism I was able to get the EMT'S to me in time, but not before the right side of my body was paralyzed and my mind was gone. I was hollow and completely numb. I could only think two things over and over in my head at that time which was, "I'm going to die" and " For the love of God, Sandi move your arms, kick your legs, or left your head". And I simply couldn't. This went on for a good 15-20 minutes, that really felt like forever, until help arrived and took me to the ER.

🍀I was able to realize just how lucky I was and I was able to stop taking the drug cold turkey afterward. Nothing like the feeling of a drug overdose mixed with a heart attack to knock some sense into a person.

 However, alot of people aren't that lucky and these drugs that doctors push and push, kill so many people.

Which, is why I need to share this. I need to help those who need it and I need to keep pushing to accomplish all I can in this life. As I have been given so many extra chances and I know that I need to give back in a big way.

Dreadfully Determined,

   Sandi 

For a few tips on how to notice narcotic dependency follow me on Facebook. 

Babies, Emotions, & CF!

Where I am in my life I long for things I don't think I'll ever have or do again and that's normal, but only ONE thing stands out above the rest is what I'll never have.

As I sit here and celebrate all of my friends and family members getting pregnant and having baby after baby. I cry to myself. I sob like a baby as I'm writing comments like, "OMG I'm so happy for you." When I want to write "why you and not me?", Why can't it be me with a baby shower and a bump collage?", Or "It isn't fair."

It's so bitter sweet. I'm genuinely am happy for them and can't wait to celebrate with them, but inside my body is screaming at itself. Screaming at my health, at my lungs, whatever God will listen, and at this curse that is Cystic Fibrosis. Inside my mind if you could hear the thoughts I am thinking you'd want to call the cops for a domestic or maybe have me committed for these screams that are so silent, but so powerful.

Growing up I knew I wanted to wait until I was older to have kids, because honestly modeling and getting out of Fairmont, WV was all I ever wanted. So, when I was in the 18-24ish age rage I didn't even think about it and thought wearing protection and all of that was working for me.

🔨Then the hammer dropped and tada sorry Sandi, you'll never be a mommy. Forget the idea of it all together, because it won't happen. At least not for me. (CF and Fertility)

Why not? It's simply really. I'm part of the Cystic's whom can't conceive naturally. Also, I'm not made of money and I didn't marry a bank. The only way we could have a baby is by paying a ridiculous amount of money for someone to create my child for me in a laboratory and well that's not going to happen. Adoption is also alot of money along with a grueling indepth check on us and with my health standing as is, I'm probably not going to be approved to adopt.

💰If I were rich I could literally adopt any baby I wanted from any country and they wouldn't bat an eye.

Sometimes I want to smack those who take advantage of being able to get pregnant at the drop of a hat. Or those who get pregnant and neglect or ignore the child. All I can think in those situations is, how dare you? I just don't understand how selfish some people are and not realizing what they have. What a precious gift they have and they simply take advantage of things.

At my doctor's appointment the topic was yet again brought up to discuss and all I could do was tear up and talk about how badly I wanted to start a family. It rips my heart completely apart. I never knew someone could ever want something so badly that it physically hurts so bad. Honestly, it pains me so deep inside to think I'll never hear the voice of a tiny child calling me mommy. I'd do anything in the world to somehow be able to make it happen.

💔Broken hearted I wait to for the day things will change for me. I guess it's true when they say you can't have it all, but I'd think that this disease was hell enough for one person. I'd give back all of my accomplishments and every achievement I've ever made just to hold a beautiful child in my arms to call our own.

Sometimes what we want isn't always what we need at that time. No matter how heart breaking it may be there is a reason.

Maybe one day,
   Sandi

For more information on CF, me, or even small medical rants follow me on Facebook

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.