Blue-Eyed Breather

As you all know, I love to read. Here are the books I read in 2016! Let me know if you have any favorites I should read in 2017 :). Thinking in Pictures by Temple Grandin The Journal of Best Practices by David Finch The Brain that Changes Itself by Dr. Norman Doidge The Diving Bell and the Butterfly by Jean-Dominique Bauby Among the hidden by Margaret Peterson Haddix Among the impostors by Margaret Peterson Haddix Still Alice by Lisa Genova Schuyler's Monster by Robert Rummel-Hudson Why not me by Mindy Kaling The Jungle Book by Rudyard Kipling A Midsummer Night's Dream by William Shakespeare 5 love languages by Gary Chapman Fahrenheit 451 by Rat Bradbury The BFG by Roald Dahl Unbroken by Laura Hillenbrand 41-A portrait of my father by George W Bush The Meaning of Marriage by Tim Keller The Secret Garden by Francis Hodgson Burnett Pollyanna by Eleanor H. Porter Life from a CF Cornerman by Raymond Poole The Magnolia Story by Chip and Joanna Gaines

It's been awhile since I've written a blog post. This semester has been busy--not only because of school stuff, but also because of exciting life things. About a month ago, the most amazing man got down on one knee and asked me to marry him! And of course, I said yes! Honestly, there were times that I questioned if I would ever marry someone. Living with cystic fibrosis is hard. Choosing to be with someone with cystic fibrosis is almost crazy. Think about it; I am not a normal 23 year old. I have to plan and plan and plan to make sure I fit breathing treatments, exercise, and eating into my schedule. When I travel, I have to take a crazy amount of stuff with me--my Vest, nebulizers, compressor, pills, inhaled medication, puffers, and snacks. I have to make sure I sleep 8-9 hours a night because my body uses more energy than most, and I need sleep to fight infection. I have to have a course of IVs at least twice a year. It's hard to be spontaneous and adventurous because C...

As most of you know, for the past 7 months, I have been participating in a Vertex clinical trial testing a drug called VX-661 in combination with Ivacaftor. On Monday, Vertex released a statement saying they are stopping the trial for people with one copy of deltaF508 mutation and one copy of another minimal CFTR function mutation (what they refer to as "het-min" mutation combination). Meaning my part in this study is finished. The results thus far showed that the drug was not providing meaningful benefit and therefore was not worth the time, effort, and money to continue studying. This drug combination is still being studied in other mutation combinations and is thought to be more promising. When I heard the news on Monday, I was filled with mixed emotions. For starters, I so desperately want there to be a cure for CF, and we're so close I can almost taste it! Yet we're not there yet, and my patience is growing thin waiting. Also, I've seen so many great succes...

I like to make life difficult. I try my best not to, but it just always happens. Sorry friends and family who have to deal with me ;). I think it's part of the cystic fibrosis code that nothing health-related can ever be easy! I started on IV antibiotics on August 2. By this point, I had been on oral Bactrim for 3 weeks and a course of prednisone to help my struggling lungs. My lung function was down to 49%, down from 60% in May. The plan was to start IV Ceftazadine and IV Levaquin for 3 weeks, which would finish just in time for my fall semester to start back up. At the beginning of the IVs, I felt like I was coughing up a lot of gross stuff and getting the excess mucus out of my lungs. However, I did PFTs again a week after starting the IVs, and the results were disappointing. Even though I had been doing 4 breathing treatments a day and exercising twice a day, my PFTs had gone down to 45%. My doctor checked my most recent sputum, and the sensitivities to the antibiotics had ch...

Nursing care is not for the arrogant. You have to be willing to learn. You have to be willing to listen. You have to be willing to say "I'm sorry, let me fix that". Nursing care is not for the insecure. You have to go into a patient's room with the expectation that you're going to do everything right. You have to come across confident and secure in your knowledge. Nursing care is not for the unorganized. You have to know when medicines are due and bring those meds at that time. You have to manage several different patient schedules and keep track of how all your patients are doing. Nursing care is not for people who don't like people. When someone needs a nurse,  they are sick and usually feeling pretty crummy. Patients shouldn't have to also deal with rude nurses or people who you can clearly tell don't like people. Nursing care is not for the faint of heart. It's hard working in the hospital, seeing so many sick people per day. Some peopl...

The past few weeks have been rough. I got a cold about 3 weeks ago. No big deal, right? I hadn't gotten a cold in 10 months, which is basically a record for me. Surely my body could fight a cold off. Boy, was I wrong. After a week of fighting the cold, I started running a high fever and felt like a truck had run me over. I finally called the doctor for some reinforcements and started on an oral antibiotic and a course of steroids. Meanwhile, my school semester had just picked up, and I was down to the last 2 weeks of school. I had to finish a research paper, take 2 finals, write a final progress report for my practicum, and give really good, productive therapy. After 4 days on the antibiotic and steroids (Monday with one week of school left), I still was feeling crummy. I checked my oxygen and noticed that it was low--running at about 90-94%. I'm pretty positive the cold had turned into pneumonia. Even walking from my bedroom to my living room made me winded. It took me two-t...

Recently, I was talking to a young woman who will be starting her freshman year of college in August. She didn't ask for my advice, but I gave it anyway. I tend to do that sometimes--blame my desire to help other people succeed as best as I can, I guess. Anyway, that got me thinking, what would I write if I were completely honest and vulnerable with incoming college freshman? What would I tell them that no one else seems to tell them? My freshman year was only 5 years ago, so my memories are still fresh. I came up with a list of things I found out to be true my freshman year. They may not all be true for you, but I hope and pray you gain some insight out of the lessons I learned. 1. Join a church and get plugged in to a small group. This should be your first order of business the minute you step on campus. Besides, you know, finding your dorm room and where all your classes are. Getting in a small group was literally the best thing I did freshman year. Not only did I start formin...

My twin sister got married Saturday, June 18, 2016. What. A. Day. Katie truly deserved the best day ever, and I believe she got that! You see, when you have a twin sister with a chronic disease, you have to grow up pretty fast.  I know that even though I'm the one with the disease, growing up wasn't easy on her, either. I got lots of extra attention she didn't get (not good attention, but still attention). I needed her to be strong many times, even when it was hard. And I counted on her to help me stay healthy, help me catch up on school work, and sometimes miss out on fun stuff to be with me. Katie is the most supportive, most protective, most caring sister I know. There was never a time she refused to step up and be there for me. My sister is truly incredible, and I'm so glad we could make her day so special. I was feeling pretty good during the whole rehearsal and getting ready the next day. However, the second I walked into the chapel heading down the aisle before...

I had the honor and the joy of being my twin sister's maid of honor for her wedding yesterday. It was so much fun, and I can't believe it's over. One of the important jobs of being MOH is giving a toast. For all you people who are curious what I said in my toast, this blog is for you! Enjoy reading the speech I gave for my awesome, fun, kind, loving twin and her now husband! ....... As most of y'all know, I'm Katie's twin sister, Emily. Growing up with a twin is a huge blessing. Katie was the only person my age who I knew I could count on for absolutely everything at every single stage of life. We may have had our fights--okay, we definitely did have our fights--but at the end of the day, I knew she still loved me and I loved her. I remember several conversations about our future weddings and what our future grooms would be like. To be honest, it's strange that's she's now a Mrs! It feels like yesterday we were just dreaming of all this. Katie is...

There's a lot of hurt in this world. Whether that be because of a disease, like cystic fibrosis, or because of evil, like gunmen who kill innocent civilians, or from our own sins, like selfishness, jealousy, or lashing out in uncontrollable anger, we live in a very broken, fragmented world. This isn't how this world was meant to be. This is not what God intended originally. After the fall, sin and pain and struggle entered this world. However,  God promises that, through accepting Christ as our Lord and Savior, we will live in eternity with Him in absolute paradise. But until then, we experience grief and hardships. As I reflect on how much pain is in this world, my heart turns to God for comfort and peace. I came across this song today, and I thought I would share it with all of you. The lyrics give me power in my weakness and hope in the darkness. Let these words cover you in truth and hope. "In Christ alone" In Christ alone my hope is found; He is my light, my...

My personality can be in direct opposition at times. I'm an introvert--I need my alone time, my time to read or watch TV or write. However, my love language is quality time. I crave spending time with the people I love. Being alone for too long can make me lonely. I feel so much love when I'm actually with people and spending time with them. For example, my parents came up to help me move into a new apartment. After we finished moving, we went to the George W Bush Library. We had a great time this weekend! But now, several hours after they left, I'm missing them so much. My apartment isn't nearly as much fun without them. So you see, my personality is at odds. I think I'm going to adjust to living on my own. I'll be at school and have my people time, and I'll also be able to see my parents and boyfriend and siblings and friends. It'll be a change. I've never lived in my own apartment by myself since freshman year when I was in a single dorm room, a...

Yesterday, I started my third semester of graduate school! Honestly, it's a little crazy how fast all this is going. I'm basically half way through! I think part of my love of speech pathology comes from the fact that I can have a huge impact on people's quality of life. I understand how important it is for people to take the time to truly care about you and want to help you improve. While I've never had speech or communication issues (besides needing articulation therapy when I was little), having CF has prepared me to be a great speech pathology. I know what I would want in a therapist: someone who listens to me, someone who cares about my physical well being, someone who is always trying to help me improve and is up to date on the latest research for the best treatment options. I know how crucial it is to be kind and compassionate to your clients. Even when I didn't know what I wanted to do with my life, I knew I wanted to help people, just like so many of my n...

Today, I had the honor to speak at the CF Walk. Below is a copy of my speech. Enjoy! Welcome to the 2016 south Austin great strides walk! My name is Emily Ingram. I am 23 years old and have cystic fibrosis. Not too long ago, CF was considered a childhood disease because people with cf did not live long into adulthood. I'm here to tell you that, thanks to the CF Foundation, half of all people with CF are now adults, and people with CF are living longer, fuller, healthier lives. I am one of those adults with CF. And let me tell you: I am living a great, somewhat normal life. Last May, I graduated from Baylor University with my bachelor's in communication sciences and disorders with a minor in linguistics. I am now at UT Dallas working on receiving my master's at one of the top speech pathology graduate schools in the country. I live by myself in an apartment in Dallas and manage all my treatments, appointments, and pill fixing. I do miss school occasionally for things like ...

On April 30th, I ran a 5k. Well, walk/jogged a 5k. In 47 minutes. I decided to sign up for this 5k six weeks prior because I was trying to push myself to exercise but I needed a goal in mind to keep to exercising. I wanted to finish the 5k in under an hour, so when I crossed the finish line at 47 minutes, I was pretty surprised that I went that much faster than I was expecting. Let me tell you, it felt great!! If you had told me a year ago that I would be participating in a 5k, I would laugh in your face. I didn't know I was capable of jogging that far! It wasn't easy--I definitely couldn't run the whole way, and my breathing was pretty rapid and deep. I'm sure everyone else running that race didn't know why I was having breathing difficulty or why running a 5k was such an accomplishment for me. But that doesn't matter--the only thing that matters is that I did it, and I know that it was a big accomplishment. I'm certainly not about to stop exercising. I enj...

"Be kind, for everyone's fighting a battle you know nothing about." I love this quote. It drives my attitudes towards others and reminds me to treat others with kindness and respect. I've talked several times on the blog about how strangers give me death glares when they hear me cough and how difficult that is on my self-esteem. I get frustrated by the lack of humanity of some people when they are concerned for their own well-being and think I'm dangerously ill and contagious when in fact I am struggling to breathe with a genetic, chronic, non-contagious disease. Similarly, in my stuttering class, we're talking about how people who stutter often fear talking to strangers because they don't want to be judged based on their speech. They are anxious of what people will say when they stutter. They dread listener's reactions. All these attitudes tend to stem from a negative experience that clouded all the positive experiences with distrust. The more I...

Sweating has never felt so good. Today, I walked for a minute, jogged for a minute for 40 minutes, which equated to about 2.3 miles. I then walked for 2 minutes, jogged for a minute for 10 more minutes, getting my exercise time up to 50 minutes and going a distance of just over 3 miles. I've never felt so fit. Even when I was in marching band in high school and in pretty great physical shape, I don't think I could run that distance or for that long. My PFTs are still at 59%--I did PFTs after I got home from exercising--but I feel so much more fit than I ever have. The numbers aren't the only factor that matters when it comes to determining health and wellness. As some of you know, I am participating in my first 5k on April 30th. This semester, I have been working hard on pushing myself in exercise. I figured the best way to make me stick to my goal was to sign up for a 5k. I know that I will not be able to run the whole race, but I will be able to walk/jog and make it to ...

Dear friends and family,             Hello!   I hope you all are having a wonderful start to 2016. It’s hard to believe another year has come and gone and here I am again, writing my yearly CF letter. Since my last letter, I graduated Summa Cum Laude from Baylor University with a bachelor’s degree in communication sciences and disorders, a minor in linguistics, and BIC Honors. If you recall from my letter last year, only 30% of CF adults graduate college, and I am so proud and thrilled to officially be in that minority! Over the summer, I had a port replacement surgery. My pediatric port just wasn’t cutting it anymore; it was finicky and didn’t like to draw back blood.   My new port sticks out more obviously than the pediatric port, but it works so much better! In August, I started graduate school at the University of Texas at Dallas for speech pathology. UTD has one of the best speech-language pathology programs in t...

Exactly four years ago today, I began my blogging journey at Blue-Eyed Breather. I started the blog at one of the lowest times in my life. In January of 2012, I had a severe bout of depression. Between the newness of college fading away, being alone in a single dorm room for health reasons, having some trust issues stemming from high school friendships gone awry, dealing with the reality of CF in a city far from family, and then starting a new medication for digestion called Reglan that can have severe neurological side effects, my body couldn't take it anymore, and I broke down. As a fierce, independent, intelligent woman, I thought I had to push through and stay strong. I thought if I prayed hard enough, everything would return to normal. But the harder I tried to remain steady, the faster I seemed to fall. I would cry on a regular basis and not really know why (this coming from a girl who cries maybe once a month...maybe). I longed for home, and when I would leave Austin, I woul...

Tomorrow, I'm going in for a bronchoscopy at 8am. I have to be at the hospital at 6am, no food or drink after 11pm. For those of you who don't know, a bronchoscopy is a procedure where a doctor goes in via the oral cavity and through the throat to get to the lungs so he can take pictures of the lungs and get good, deep cultures of what bacteria is growing. It's helpful to make sure we aren't missing treating a bacteria growing in my lungs and causing me problems. I will have to have general anesthesia, which means there is the chance of complications related to that. If you would, please be sending prayers and good thoughts tomorrow, that the procedure is successful and that I don't have any complications. Thank you for your love and support!

Today's topic on the blog: complacency. Most CF people go through a phase of not being compliant with all their treatments. It just happens. There are so many therapies to keep track of, and it can get overwhelming. Many people with CF have a moment when they want to forget about their CF and just be "normal". This uncompliant phase lasts varying amounts of time, but usually it lasts until the person is hit over the head with the fact that they're only hurting themselves when they refuse to keep up with their treatments and that their health will go downhill fast without the help of current medications. In my life, I've never really had a moment when I've flat out refused to be compliant. No, I'm not saying I've never skipped a treatment or never forgotten to take pills. But I've never deliberately chosen to ignore the advice of doctors and prescribed therapies. I guess I've always had a feeling that my doctors truly want what is best for m...

If you haven't seen this parody video of Katy Perry's "Roar", stop what you're doing and follow the link below to watch it. It's seriously so encouraging to fellow CFers like me to see so many awesome people with CF doing amazing things. We will not be ignored! parody video

It's been a month since I last blogged. Much has happened in the last month. My PFTs have been declining over the last few months. In September, my PFTs were at 62%. On January 26th, I went to the doctor to do PFTs. They were at 52%. It was time to attack the bacteria in my lungs with heavy duty IV antibiotics. I went in the hospital on January 27th. Usually, I start IV antibiotics at home. My parents have been doing home IVs since I was 8 months old, and I have learned how to take care of my IVs all growing up. I hate going in the hospital (let's be real, who enjoys being inpatient?!). I never sleep well, and I just like being home much more than being confined to a hospital bed. However, my doctor wanted to put me on an IV antibiotic that I had previously had an allergic-type reaction to, so I needed to be inpatient to ensure I didn't have a reaction. I was inpatient from January 27th-January 29th. Although the hospital was brand new, the rooms were huge, and the cafeteri...

As I sit here on the exercise bike in the gym (yes, I'm exercising while writing this post--check mark for good CF multitasking skills!), I'm thinking about all that has happened in the last month. And trust me, it's been a lot that the blog world really doesn't know about. I'm trying to figure out where to begin and how to go about writing another blog post, and about 5 million thoughts pop in my head about things I need to write about. So, I'll just start from the beginning. In December, I finished up my first semester of graduate school. The semester went by incredibly quickly, and I thoroughly enjoyed my classes and practicum experience. Moving to Dallas has been an adjustment for me. All my close friends and boyfriend still live in Waco, and my family does not live near Dallas. In the summer, I embarked on this great adventure away from people I felt most comfortable with, and I can't say it's been easy. Thankfully, my sister lives pretty close, a...

As 2015 has drawn to a close, it's time to look at the books I read this year! It's been a busy year, so I haven't gotten to read as much as I would like, but I still enjoyed the books I had the opportunity to read. Here's my 2015 book list: Dangers in the Shadows by Dee Henderson Harry Potter and the Deathly Hallows by JK Rowling The Great Gatsby by F. Scott Fitzgerald Confession of a Professional Hospital Patient by Michael Weiss  Room with a View-E.M. Forster The awakening by Kate Chopin True Devotion by Dee Henderson Their Eyes were Watching God The House on Mango Street Catcher in the Rye Joy Luck Club ...