Great Strides 2016

Sometimes you need a day of Rest (Big Tree fall Hard)

Great Strides is right around the corner, and I hope the weather actually becomes spring/beginning of summer by May 22nd. And I also hope that I am able to get better by May 22nd. Some of you who follow me on Instagram/Facebook, might be wondering why I want to get better, as I had recently posted positive news about getting PICC line removed and how I was able to go on two runs with two days, and that my PFT's hadn't been where they are since December 2014. This is all completely true, however I did a horrible and quick turn around, my lung function went from 70% back down to 57% with a two week period. It is very strange, as the first week after stopping IV's I was able to get in 6 different runs. However the last run was definitely more of a struggle with coughing up a ton of mucus and a mini vomiting episode. Nevertheless, I pushed forward thinking that was just a little bump in the road to continuing to feel fabulous. 

But for some reason I didn't continue to feel well, after that I just started declining in feeling more tired, started getting fevers, aches, and coughing a ton. So obviously all of this was making me feel very exhausted, since I was also working. 

Currently, I'm back on regular oral antibiotics and prednisone, as we are hoping I don't have to get another PICC line too quick after just finishing IVs. Everything is a trial with CF, there is no black and white, the doctors obviously know medications that should work, and treatments that should work, but sometimes the medications and treatments for whatever reason just don't take. Maybe I've become immune to something or I'm allergic or it might not mix well with something I'm currently on. It's a complete game of juggle, but it's for my own body and trying to find out what continues to make it work properly. 

I am pretty much always a happy person, but the one thing that can get me down is my CF as it can be a struggle at times, however I would really rather have it be an after thought and not my whole entire life. SO Please if you are able donate to the Maddie Mockingbirds so that the Cystic Fibrosis Foundation can help us find a CURE! And if you are around for May 22nd, join our team and you can come walk with us and you might even get some Gelato!! 

Rice Kripies are AWESOME

Rice Krispies are like gold to me when I'm hungry. Anyone who knows me or went to college with me can tell you, I can and will scarf down 3-4 bowls if there is time, enough cereal and if the milk is very cold. I have been told my taste buds are very sensitive to certain flavors that others might find bland, for instance rice Krispies and whole milk or Turkey and lettuce on a hard roll with nothing else on it. But when I'm sick, I don't have any appetite to eat any of the items listed above or anything for that matter. When I'm sick eating food seems like a massive chore that I do not want to part take in, and I seriously love food, especially cheese. 

Recently I got hit by a horrible cold, I was exhausted, coughing up a lung with this deep gross cough, which made me sound like a life long smoker. Along with the exhaustion came, sinus headaches and feeling achy/feverish. It was not a good time, but I went to my doctor and she put me on some IV antibiotics that seem to be working!! WHOOP WHOOP! As I'm beginning to feel better, and actually craving certain foods again, it so exciting, it's like each time I come back from being sick I forget why I loved food so much, oh yeah cause it's Fucking Delicious. 

I walked into Stop&Shop last night and thought I REALLY want Rice Krispies (despite already have life and organic cocoa krispies at home, I love cereal, it's fine)!! And yes it is sugar cereal, but it is delicious when eaten correctly!! haha. But yeah basically I'm super excited to be Happy and Hungry, because it is truly annoying to have everyone in the world tell you, "you need to eat," when you really don't feel like it and are afraid of vomiting it up again!! SO Yay for when antibiotics work, cause eating is awesome. 

p.s. I didn't just have Rice Krispies for Dinner, I also had pork tenderloin and a salad (believe it or not, I did have some greens) 

Happy Friday!! 

Running For CF In USA and Abroad.

As many of you may know I have three amazing humans in my life that are running the New York marathon for Cystic Fibrosis, for the Boomer esiason foundation. They include my sister who lives in Colorado, I have told her training at altitude should be an advantage for her, granted I have never run 26.2 miles. So she will have to fill me in on how she fells after the marathon.  Secondly is my sisters friend Kirsten, a friend from growing up in NC, who is doing her fellowship to be an anesthesiologist at Columbia Presbyterian, which is actually my new hospital (I switched from Yale). She is looking forward to running around her new city and doing it for the best cause ever (I might be biased). Thirdly is my brother, who has always been an athletic nut, he is trying to help a sister out (haha not trying to sound like I'm from the hood, I swear) and get some money for cystic fibrosis, he has seen me cough my head off too many times I think. 

It makes me super touched when people tell me they hope I feel better soon and show that they  genuinely care and having serious concern for someone else besides themselves. Haha I don't mean for that to sound selfish, for my self, but when you can't go crazy on a regular basis like a "regular" 25 year old, it makes you feel human/"normal" to know people care and want to understand how it feels. So when people are willing to push their bodies to the complete limit, running 26.2 miles in one day, the longest these three humans have ever run. It's like whoa these humans are amazing, and so are everyone that can get behind them. Cause in the end it's not just for me, but as I may have said before their are about 70,000 plus people world wide and about 30,000 plus in the United States living with cystic fibrosis. I have begun connecting with many CFers online and found there are many people sicker then my self and some healthier, it's always comforting find people who go through the same thing as you, but sometimes it would be nice to not have it in common. Although, the positive is that the negative things that occur can build character and personal strength. However sometimes no matter what you do, you can't win, which is why more drugs like Orkambi and Kalydeco need to come out and the way to do that is through donation. Just think that I just started Orkambi at the age of 25 and the research for it began about 20 years ago. SO Please donate. and support CF and these fabulous NYC Runners. 

Lizy

Kirsten

James and coopy posing for the photo

Not to forget about my dear friends from across the Pond in England, Olivia and Shane will be running the half marathon for CF. They are pretty amazing people, they mostly have live in England, but lived for a short time in both Mexico and outside of Boston. But they drove across country when I lived in San Francisco and although I had promised them a grand SF tour it turned out I was going to be in the hospital during their stay. Nevertheless they came to visit me walking from Bernal Heights to UCSF (they love to walk), daily while they were there! I'm sad I can't see them more, but with more research and donations to all countries, I have faith some more amazing drugs will be created so that I can travel at my leisure. So PLEASE help out Olivia in Shane, in England by donating for their half marathon. GOOD Luck on the 13 miles. Ps the half marathon is on the 20th of September!!

Olivia 

Shane

Music Makes Life More Exciting

Kiesza is amazing, I saw her last night at Irving Plaza, along with Betty Who. It reminded me of when I was in the hospital in January and would play Kiesza's song Hideaway (the song below) on repeat to keep my spirits up, because 1. I love dance and 2. I Love music with great beats. I later I started to listen to the rest of her album, but it is always so great to come across a song that can bring your spirits up no matter the circumstances. Music is a powerful thing. 

Below are some songs that have been keeping me going, from friends, family, and just searching, they all have awesome beats and videos. 

HAPPY CINCO DE MAYO 

My Own Theory of Health and Happiness

I recently saw the movie the Theory of Everything. One of the things that made me think why Stephan hawking has lived wayyy past the date that he first was told he would, was because he had a supportive and a loving family, I am not sure how much of the actual drama went on in real life, since it is a hollywood movie, but I know the struggle is real. But to have had kids, who he was able to see grow up, and experience the birth of new life and the joy and frustrations kids bring, is an amazing thing. And the other part was that he was and still is able to do what he loves to do despite what he has lost. 

I find this very real and relevant since I have found you can’t get better, while feeling sad or frustrated. It just doesn’t work that way. You must have the support and positive outlook, or at least a willingness to fight. My dad the other day in a kind of morbid, but realistic way, had seen me crying because I haven’t gotten back to my normal healthy self just yet, and gave it to me simply, “you either fight, or you give up and die,” and that is the truth. However morbid it might sounds, it is the truth for everyone whether they are sick or healthy. You either fight for what you want to do and go after something, or you just give in and disappear. Personally I agree to fight, I mean I have been doing it all my life, just now it’s a bit more intense, a few more treatments here and there, and forcing food is a necessity. 

A couple of weeks back I came upon this amazing human on social media named Caleigh, who is raising money for her double lung transplant through her Fight2Breathe campaign. She has an amazing positive outlook and really has uplifted me, since she is going through a whole other side to CF that I have never seen personally, and it is just amazing how she is doing it with her positive energy and fighting determination to stay strong for the transplant!! And her supportive loving family seems to right behind her, cheering her on through good and bad times. I also found her logo on her t-shirts and sweatshirts she is selling to be super cool, I bought one and put it on the minute it arrived. You should check her out on her Facebook and Instagram and donate to such a life changing cause, because breathing should be a thing that don't have to think about! 

But as I said the second part of why I think Stephan Hawking has lived so long, is he was and still is able to use his brain for equations and his genius thoughts, and that is the second piece to the puzzle as I have found, you must continue to pursue your dreams of careers or hobbies

because being always sick can get dull and boring as hell real quickly. For instance I am not just a girl with CF, I love to draw, dance, I love animals, I love houses, as well as window shopping for beautiful clothes, and I love to eat rice with red meat. But medical issues sometimes can blind you to what is also important to a person, health is obviously most important, but so is the happiness of living and enjoying life! 

The Fight2Breathe t-shirt logo, I think I might love it so much, cause I was born in 1990

One of my Oil Pastel drawings of my cousins dogs in the snow, I did it for Christmas and working on more currently. 

forget all the hate and confusion towards this video... I really love this song 

and the dancing is pretty great. 

"Rock Bottom is for Sissies"

Recently my health took another hit by getting Rhino Virus, which threw my whole body for a loop. My PFT's (Pulmonary Function tests) were the worst they have been in a long time or ever. It is pretty frightening to see a low percentage that is suppose to represent how you're breathing. It's like you have failed at life. I have always had pride in being able to bring my lung function back up. I don't like giving up. But this time, I actually felt a large struggle in the beginning, I mean I thought I felt a struggle before, but nothing compared to this, it dropped so fast and far. I had, had an appointment on 22nd and things weren't fabulous, meaning I wasn't back to my base line but I was feeling good and they had gone up since my last visit. And from the 22nd of December to the 6th of January my PFT's had gone from about 68% to 50%. And for those of you who don't really know much of what that actually means. A regular exacerbation I might go from 68% to 64% for that amount of time. I didn't even finish my Pulmonary Function Test, by second round (there is usually 3) the technician knew from my large efforts and massive amount of coughing that I would be coming in to the hospital. 

I am starting to feel better, slowly but surely. Last night I was reading one of Chelsea Handlers books, I have become obsessed with her books, because they make you laugh out loud, it's like watching a hilarious chick flick but in a book form and way better. Well anyway while reading one of her books, I came upon this quote, and I don't really care what she was referring to because after seeing this quote it I felt it was very real life and connected with me. 

“ Rock bottom is for sissies; I’ve hit rock bottom a dozen times. I’ve woken up next to a billy goat, for christ sake. You just don’t give up! ” 

~ Chelsea Handler My Horizontal Life: A collection of one night stands 

We all feel like we have hit rock bottom from time to time, from work, health, or a break up. sometimes you really don't think anyone can relate, granted Chelsea wasn't coughing her brains out, but it brought me comfort that others feel this way and of course made me laugh. I mean you might say obviously we all have our own shit we have to deal with, but from my perspective it is good to see others also have their own struggle while being real and honest.   

A little blast from the past song! : )

Hospitalizations Happen, Life Goes On!

As many of you may know I have Cystic Fibrosis. This year I have been really cruising along compared to the horrible health I had in 2013; when I was in San Fran and had 6 hospitalizations in 8 months. Recently, I have been feeling great, being able to take trips, see friends, started real estate school and I am now studying for the test. I was able to do all of these things because my health has been my first priority. I still have had my bumps in the road here and there with oral antibiotics and increased airway clearance treatments. But I have been able to live my life and do my daily routine without the hospital. 

But as I kept talking about how great I had been since my last flu related hospitalization in May (And knocking on wood every time) I ended up jinxing my self. I ended up in the hospital this past weekend being very dehydrated, exhausted, coughing a ton and with a fever. Luckily it has been a while so it wasn't a complete pain, but I still wasn't feeling my best, actually far from it, so of course the tears did occur. But one thing my body does seem to do well (knock on wood) is bouncing back quickly. I have been on intensive IV antibiotics for the past 3 days and as of yesterday afternoon I felt like I could leave this joint (the hospital) and never come back. But obviously that won't be happening. I am awaiting test results to see what antibiotic I will be leaving here on and of course they are always very cautions of saying, "yes you will be able to go tomorrow" or whatever, since I have been promised that before and then not seeing it happen is probably the worst feeling.

But as I have been sitting here in the hospital for the past few days watching everything on Netflix. I have decided to try to seriously add a few more things to the list of my health todos to see if I could stay out of here for longer! 

1. To have a Half&Half and/or Heavy Cream Hot Chocolate every day in order to add the extra pounds the doctors have asked me to gain for the last year... and maybe with Christmas coming I will experiment with Eggnog

2. Try to go to the Salt Caves a few more times, perhaps going every other week or every week for a month or two. Considering there have been many studies on it that shows in addition to my regular CF treatments they can help. I did go to one in Ridgefield, CT back in september and have been meaning to go back ever since but haven't had the chance. 

3. Also remember to take all my extra meds as I like to call them. My enzymes (digest my food), inhaled meds, albuterol, insulin are what I consider to be my life or death meds (not to be too morbid, but I wouldn't be here without my enzymes for one). But obviously my vitamins are very important, as are my antacid meds, so I just need to work them into my day to day schedule so I don't become forgetful about them again! 

4. Lastly, remind my self how amazing it feels to exercise. How I love to run. Listen to music, and clear my mind while doing so! 

Because even though sometimes I really can't avoid a hospitalization. Even when I do everything I am suppose to, I can always try to the best and hope the rest falls into place! 

I hope you all have a fantastic Tuesday and that this ugly weather we are having on the East Coast isn't everywhere!!