I feel like people forget that pediatric illnesses generally last into adulthood like…childhood cancer survivors often have medical complications for the rest of their (adult) lives. My juvenile arthritis will be around when I’m 75. Crohn’s disease, cystic fibrosis, congenital heart defects - all of these things, when acquired in childhood, have lifelong complications. Childhood diseases aren’t just cute, happy kids smiling from hospital beds. Theyre pain and suffering and learning to live differently forever.
"Whoa, What Are Those For?" CF Medications In Public
If you know anything about Cystic Fibrosis, you probably are aware of the insane amount of pills and other therapies that we require in our everyday life. While there are a lot of medications, patients with CF, like me, still have to go on with our lives like a normal person. This includes having to do our medications in public. When I have to take my Cystic Fibrosis medication in public, I am usually pretty discreet about it. Although, sometimes it’s hard to keep them from being seen. When I was in elementary school at lunch, I was asked many times about my enzymes. Being that young, I only understood that I needed them to digest my food. So, that’s what I told my classmates. Nowadays, people are aware I have something going on due to my constant supplemental oxygen. When I go to eat and pull out my 6 horse-sized enzyme pills, I get a “Whoa, what are those for?” or a “What are those for? They are HUGE. I can hardly take one small pill!” I use this time to create awareness for Cystic Fibrosis and explain that while CF affects my lungs, it also affects my digestive system causing a problem absorbing nutrients and breaking down food.
Another medication that is hard to hide is my breathing nebulizer machine. Sometimes I have to do it in public. When I was younger I was embarrassed, due to all the stares I received. Now, I do it with confidence because there’s nothing to be ashamed of. Some people come up to me and ask me about it. Like the enzymes, I always tell people about Cystic Fibrosis because it’s impossible to get awareness out without talking about. Plus, if the public is not educated about it, then there likely won’t be enough funding for a cure or drug development. When I get asked about my breathing treatment, I explain that I have a genetic illness called CF that causes my lungs to fill with sticky mucus that will eventually grow bacteria and cause my lungs to scar, which is irreversible. This can lead to needing a double lung transplant when the lungs are too scarred up and the lung function drops too low. So, in order to get this junk out of my lungs and to breathe easy, I need nebulized breathing treatments.
I am never embarrassed when people ask me questions in public about my medication. I find it as a way to open up someone’s eyes and heart to the struggles of a person with Cystic Fibrosis. I always hope that after speaking to the public, I spark an interest in them to go research it and hopefully get involved with their Cystic Fibrosis community to find a cure. Hopefully one day we will have a cure. That’s a world I dream about :)
1. Never tell them that they do not look sick. We are very aware of this, hence why its called INVISIBLE illnesses.
2. Never make them feel like their feelings are invalid and we are overnreacting. We are usually in pain but do not show it.
3. Please understand that we want to go out and feel normal but sometimes its too much to get out of bed.
4. Dont discourage us from persuing our dreams and future just because we are unwell. We are aspiring humans as well.
5. Understand that we are really trying. We are not just lazy.
6. Dont make us feel like shit when we physically cannot do things.
7. Understand that even though its not visible pain, its just as dibilitating as a visible disease.
8. Ask us questions if you dont understand and dont just assume. We are more than happy to try to help you understand.
9. Show us that we are loved and wanted. Most times we feel like a burden to our loved ones. Its terrible to feel alone in this.
10. We want more than anything to feel normal. Dont treat us like were fragile. This makes us stronger and more determined to succeed. Encourage us to never give up.
I saw this on instagram and thought it was too cute not to post. It’s always been a funny thought to me about how I’m always on both antibiotics and probiotics. By their names, you’d think you’d need one or the other, but in reality, both work together in harmony to keep our sick little bodies somewhat in check.
Ok so im in the hospital and Im gonna be completely honest I am not doing very well atm. I was hospitalized last month for pneumonia, and even though I got sick everyone was optimistic that I was gonna get better. Unfortunately my body had other plans and started attacking my transplanted lungs (I had a double lung transplant in 2013 due to Cystic Fibrosis) So I am being treated for rejection which is a very slow process. I had a cathider placed in my groin for Plasma exchanges and treated with
Anti-thymocyte globulin (ATGs).
Its been pretty rough. Over this past weekend @thatarikuchan came all the way up here to Houston (We both live in Corpus but my Doctors are in here in Houston, 3.5 hour drive) to spend it with me. While she was here she went shopping with her mom and friend, and they went to the mall. Alex went in to Gamestop within the mall and was gonna pick me up some Pokemon cards. The manager Stesan talked to Alex asking if she needed help with anything, she joked about if he had any Switches that she could pre-order knowing full well it wasn’t gonna happen. He laughed and was like well we get two consoles not pre-ordered that can be purchased but joked youll have to be here early Friday. She says well she wont be here cause is just here visiting me in the hospital. So he inquired why I was here, and he has known several friends that have gone through the same thing.
So Stesan told her that he could try to get one of those 2 consoles on hold for me. He would have to make a few calls, but he would try his darnest.
Fast forward to Yesterday. I was having the shittest day. I was told the treatment I was doing only has a 60% chance of working, Im in a huge fight with my sister, Ive been way from Alex for so long at this point Im losing it. I get a call from Alex saying guess what? Stesan reserved the Switch for you along with Breathe of the Wild on launch day. This man had gone all the way to corporate to do this to me, and everyone was in agreement that they should do this. Great people over there at Gamestop and im so grateful!
So for the first time ever I will be receiving a new console on launch! Along with Breath of the Wild! So I just wanted to Thank Stesan and the rest of Gamestop, for providing me the best medicine I could’ve asked for, when I really needed it!