As much as I love talking about shopping and cooking, I must admit a huge influence in starting this blog was my health. I try not to broadcast myself as "sick" and I certainly don't expect or even want pity, but I can't deny the fact that my health is a very prominent and serious aspect of my life. I don't necessarily understand why I was given this adversity and I definitely am not always okay with, but I do see the positive that come from it. God gave me the ability to handle it, for one reason or another. And truth be told, talking about my health, both the blessings and the trials, is a coping mechanism for me. It's my way of making sense of it, and making it mean something.
I found this prompt on a blog a while back and bookmarked it, knowing
eventually I would start my own blog and fill it out. I figured for those who don't know, or even those who know but might be too nervous to ask more questions, this is a great way to introduce my health. It's called "30 Things About My Invisible Illness You May Not Know."
1. The illness I live with is: Cystic Fibrosis and Cystic Fibrosis Related Diabetes.
2. I was diagnosed with it in the year: 1992, at 7 weeks of age.
3. But I had symptoms since: birth. I was born premature with a low birth weight and was initially labeled Failure to Thrive. When my weight decreased, despite being fed a high caloric formula every 1-2 hours, 24 hours a day for a month straight, my mom and doctors began looking into additional causes for weight difficulties. My respiratory symptoms began around 1 year of age.
4. The biggest adjustment I've had to make is: learning to respect my body's limits and transitioning from being a child to an adult who takes responsibility for my own health. Sometimes, I get caught up in life and the fact that I am an active 21 year old and literally just forget about my health. As much as I want to be "normal," I have limits. And when I push myself too far, there are consequences. I've learned that I really can't stay out late two nights in a row without needing a full day to recover. Or when I run errands, if I try to make more than about 3 stops, I will wear myself out and need a nap when I get back home. I've also struggled to transition from being a kid and being taken care of, to a grown up and taking care of myself. And trust me, I'm not very good at it yet. Even if I'm 21 and a junior in college, I'm still very much a girl who would be a wreck without her mother.
5. Most people assume: that I am this strong, mature, always happy person. And most days, yeah, I am. But I have my bad days too. I cry, I yell. I drive too fast with too loud of music blaring. I struggle, I fall apart. Some days, I'm happy. And some days, I'm sad. Some days, I'm mature and can accept things, and other days, I'm a whiny little brat. Some days, I am strong, and some days, I need strength.
6. The hardest part about mornings are: EVERYTHING, haha. I hate mornings, so much. I don't always sleep well and I wake up everyday around 4-5am to turn off my feeding tube, so I rarely get a full nights sleep and feel rested. I also wake up nausea for no reason at all every now and then. Just waking up and getting active is difficult. Additionally, I am
suppose to do 45 minutes worth of nebulizers and respiratory therapy in the mornings. I'm going to be completely honest here, it's a good week if that happens even twice. On days I have class, it never happens. Finding that kind of time is really difficult for me and definitely an area in need of improvement.
7. My favorite medical TV show is: House! I'm actually watching it right now :) Although, pretty much all medical shows are completely unrealistic. There's hardly any nurses and the residents do everything. Anyone who has actually been admitted to the hospital knows that's not how it goes, at all. I literally cannot remember a single time a doctor has actually brought me medications while I was inpatient.
8. A gadget I couldn’t live without is: medically related? My portable nebulizer machine, the E-Flow/Trio. It's the size of a softball and battery powered, so I can walk around the house and am not tied down by tubing. It also runs significantly faster than the standard machines. All gadget though? Definitely my phone. The wifi at my hospital is sketchy, to say the least, so my phone is my lifeline when I'm admitted. It keeps me connected to people in the outside world, lets me play games or browse Pinterest when I'm board, and listen to music when I need to escape.
9. The hardest part about nights are: finishing up my nightly treatments and especially setting up my nightly g-tube feed. By the time I am ready for bed, I am so tired, I just want to sleep. I don't want to do breathing treatments for 45 minutes. I don't want to take 10 different pills. I don't want to spend the time to pour cans of formula into a bag, prime the tubing, hook up the extension, and give myself insulin. Plus, the formula smells so gross it makes me nausea just opening the cans! I wish I could just changed into sweats and lay down without any worries.
10. Each day I take: 7 different oral medications, 4 different vitamins, 5 inhaled medications, digestive enzymes and insulin with all meals and snacks. I also take supplemental feeding through a g-tube overnight and do respiratory therapy through my VEST system twice a day.
11. Regarding alternative treatments I: am open to it, within reason. I'm not about to just stop all my pharmaceutical medications and start popping herbal supplements... but if something seems beneficial, I'm willing to try it. Recently, I ordered tubs of coconut oil on Groupon because I heard from a few friends that it is a great supplement for weight gain. I haven't started it yet, because I don't have the supplies I need to put it through my feeding tube, but I plan to get some at my next appointment and then start it. Fingers crossed it helps because I haven't been over 100lbs in over six months. Stuffing my face with Taco Bell and ice cream doesn't appear to be working, so I'm exploring new options :P
12. If I had to choose between an invisible illness or visible I would choose: an invisible illness. I really don't like being pitied, and when you have a visible illness, that is very difficult to avoid. I don't want to be seen as the "sick" girl. I'm not ashamed of my health, but it is a personal affair and I prefer to be able to decide who gets to know and when on my own terms.
13. Regarding working and career: I'm terrified. I have only held part time jobs so far and even that was difficult. I'm scared that I will never have the physical capability to work.
14. People would be surprised to know: in December 2011, I had a severe allergic reaction to a medication that only 1 in 1 million individuals develop.
15. The hardest thing to accept about my reality has been: recently, the waiting game. Within the next 5 years, there will be very promising and very effective new medications for CF patients. Medications that will literally change the entire landscape of care. Problem is, I have to make it that far. Currently, my lung function is 50%. One bad infection could drop me to the 30s. Once your lungs deteriorate that much, it can be very difficult to regain function and most patients are evaluated for transplant. I know that if my health falls to that point before the new medications come, they won't be very helpful for me. The anxiety of waiting and the uncertainty that comes along with it is very unsettling.
16. Something I never thought I could do with my illness that I did was: attend and excel in college. When I was born, I wasn't expected to live past high school. I was relatively healthy throughout my childhood, only had 3 hospitalizations total. High school, however, was a very different story. Starting my sophomore year, I was hospitalized 2-4 every year. I ended up being "held back" a grade because of it. Thankfully, I started a year early, so I ended up still graduating on time. Regardless, throughout high school, I never honestly expected that I would be able to go to college. I was accepted to Virginia Tech my senior year, but I chose to stay at community college because I didn't think I could handle being away from home. It was a really hard decision, but it was for the best. I had my struggles; hospitalizations, incompletes, make ups and extensions.. but I ended up graduating from TCC in May 2012 with a perfect GPA. I transferred to ODU that fall. Again, I wasn't truly sure I could handle it... but so far, I'm two semesters in and I still have a 4.0. I am absolutely loving my classes and having a fantastic time. I am still cautious when it comes to my health; I had a rough time over spring break this year and took a lot of extensions. In the end though, everything worked out. It's a great feeling to know I am not only able to attend school like a "normal" kid, but that I am doing really well at it too.
17. The commercials about my illness: are nonexistent. CF is a rare disease, only 30,000 in the United States. And there is no federal funding for it at all. So public awareness is pretty much a no go.
18. Something I really miss doing since I was diagnosed is: I've had CF since I was an infant, so I don't really have any memories from before I was diagnosed.
19. It was really hard to have to give up: my pride and independence. I'm a pretty strong willed and stubborn girl, and I want desperately to do things on my own. It's difficult for me to first, recognize when I need help, and second, actually ask for it.
20. A new hobby I have taken up since my diagnosis is: again, I was diagnosed as an infant so.... ha. I guess, if I had to chose something, it would be art in general. I've done arts and crafts for as long as I can remember. It's my escape and a source of pure joy. And I always bring some project with me to the hospital to pass the time.
21. If I could have one day of feeling normal I would: run a marathon. Or go scuba diving.
22. My illness has taught me: patience, resilience, hope. I've learned that yes, there are bad days, but it's going to get better. It might not be tomorrow, it might not even be the day after tomorrow, but it will. If you don't believe in better days, don't hope for better days, you will crush your own spirit and your future. And, as cliche as it's going to sound, it's taught me that life is beautiful. Far too many people take this life for granted. They take each breath for granted. No one is guaranteed to wake up tomorrow, but when you grow up knowing your life expectancy is half of your peers, you learn to accept and appreciate life in a very different way. My illness has given me a perspective most people spend 70 years trying to find.
23. Want to know a secret? I cannot stand the smell of insulin. Hahaha. Seriously though, I hate it. It's so... sterile? I don't know how to describe it, but it's awful. Sucks, considering I am an insulin dependent diabetic? -__-
24. I love it when people: reach out to me when I'm sick. The moral support I get through text, phone calls and facebook when I am in the hospital is incredible. I really can't express how much it means to me. Even if I don't respond, to see multiple missed calls, voicemails and texts of people telling me they are praying for me and that they love me. Or even just facebook comments saying get well soon. It makes those weeks so much easier.
25. My favorite motto, scripture, quote that gets me through tough times is: "dum spiro, spero." It's Latin for "as long as I breathe, I hope" and it's permanently tattooed onto my wrist in my mom's handwriting. It's perfect.
26. When someone is diagnosed I’d like to tell them: It's going to be hard, but it's going to be okay. CF is not what it used to be. It's not a death sentence. The new medications and therapies coming out are ground breaking. With modern medicine, a strong spirit and commitment, it's entirely possible to live a normal, amazing life with CF.
27. Something that has surprised me about living with an illness is: seeing how far medical research has come for CF since I was a child. There is still a lot of progress to be made, but the successes so far are fantastic and have improved the length and quality of lives for all patients. Fifteen years ago, when I did my first course of home IV antibiotics, I had this totally stylish fanny pack with bags of fluid and an electronic pump that was loud, bulky and honestly kind of traumatizing to a child. You had to set the rates on the pump with every dose and it beeped obnoxiously every two seconds when there was a problem. Today, I get self infusing elastic balls, no bigger than a baseball, no batteries, no beeping. I just unhook a clamp and it releases the medication at the right rate. It's so fantastic. And that is just one of many new medications, therapies and overall advances in are.
28. The nicest thing someone did for me when I wasn’t feeling well was: my mother never ceases to amaze me with her unconditional love and sacrifices for me. She is always willing to help, in any and every way possible. Getting me medications or food when I can't even get off the couch, driving me to the ER in the middle of the night, researching for hours when something is wrong... all of it. I am so incredibly blessed to have her in my life.
29. I’m involved with Invisible Illness Week because: ...definitely didn't realize this was part an awareness event.. oops. Well, if I had done it during the week, it would be because awareness is a much needed aspect of healthcare. Money is necessarily for medical research. But in order to raise funds, people need to know what their raising money for. Most "healthy" people have absolutely no idea what it means to be sick. Sharing my story is a simple and honest way to show them.
30. The fact that you read this list makes me feel: loved, and thankful. In addition to being helpful because I can express myself, talking about my health is helpful because it gives me strength to hear the responses. I'm often told that I am an inspiration to others. That really just warms my heart. It's amazing to know I am influencing and helping other people. I'm not going to lie, having Cystic Fibrosis can be a living hell at times. It's painful, it's depressing, it's not fair and just plain difficult. And one of my greatest fears is that it will be in vain. When I hear sweet comments from my friends and even strangers though, it makes it so much easier. It reassures me that I am making an impact. I'm so honored, grateful and encouraged every time someone reaches out to me to tell me they read my posts and are inspired by them.