Skip to main content

Tips

I'm making it! Just a few more days and I'll be back home and starting IV antibiotics. It's probably a little sad that I'm counting down the days until I start a course of antibiotics. I mean, really? That's not normal. But hey, that's one of the costs of CF life.  

Many of you don't know what it's like to think that a routine schedule of IV antibiotics is normal. Heck, most of you have probably never been in the hospital yourself. I know that you must feel at a loss as to what to do when your friends or family members are in the hospital or are receiving IVs. Lucky for you, I have some experience. Obviously, these tips aren't useful in all cases. They are just ideas I've come up with over the years when dealing with people who want to help me but don't know how.

1. Never ever ever say you know what they're going through. Everyone's situations are different. If I hear one more person say, "I know how you feel", I might scream. The truth of the matter is, you don't know what I'm going through unless you have CF and have gone through a very similar situation. The majority of people who sympathize with me by saying they know how I feel actually have no idea of  the horrors and pains my body is going through. PLEASE don't ever say that unless you can back yourself up a whole lot with real-life experience.

2. Don't forgot about your friend. Your friend is probably really struggling emotionally and obviously physically. Make sure to make yourself available to your friend--text encouraging messages, send handwritten letters, give lots of hugs, make a conscience effort to let your friend know you care. Trust me, it'll mean more to him or her than you know if you take the time to love your friend the best way you know how. 

3. Your friend most likely isn't going to ask for help. I absolutely detest asking people for anything. When people take initiative to do something for me without me having to ask,especially when I'm not feeling well, I feel so loved. Pay attention to your friend's needs, and serve out of the abundance of your heart. Your actions will speak loud and clear.

4. If your friend is in the hospital, bring food!! Hospital food is obviously not the most tasteful thing in the world. You wouldn't want to eat gross hospital food all the time, one would you? I didn't think so. Show a little generosity, and bring your friend's favorite food to the hospital.

5. Know your friend probably isn't going to be acting like herself. Don't run away or hold it against her. Care for her lovingly. Your friend may not always resond to your texts or calls. Text and call her anyway. Your friend probably will need to sleep a lot. Make time to see her when she feels up to it, but don't overstay your welcome. Your friend may be feeling sick and nauseous. Support her always. Simply put, be a good friend!
Labels:

Comments

Post a Comment

Popular posts from this blog

CF Letter 2020

Dear friends and family, It's May 2020, which means it is another CF Awareness month and another time to talk about all the amazing things happening in the CF world! This has been a very good year in the CF community. In October of 2019, Trikafta was approved by the FDA for all people with CF with at least one copy of the dF508 mutation. 90% of people with CF have at least one copy of this specific mutation. This is a HUGE deal in the CF community because it is one of a handful of drugs that addresses the underlying cause of CF and the only drug that such a huge percentage of people with CF can take. Trikafta is a total game-changer for so many, including me. I have gained stability, I require fewer IV antibiotics, I gained lung function I thought was long gone, and I feel like I can plan things in my life again. The hard work of the CF Foundation, willing researchers who continue to search for a cure and medicines that will increase quality of life, and the generous donations fr
2 comments
Read more

CF Letter 2019

Dear friends and family, I hope you all are having a happy and healthy 2019! The Great Strides CF Walk is just around the corner, and we are gearing up for a great walk day! Since my last CF Walk letter, my health has had its ups and downs. Just before the CF walk last year, I got the sickest I have been in awhile and had to fight off pneumonia with the help of 4 weeks of IVs. I also had to do IV antibiotics in August and November. However, I have stayed relatively healthy in 2019, and for that, I am extremely grateful! Although I’ve had to fight off 2 colds, my body has been able to get through it without needing IV antibiotics. While I know I will need another round of IVs eventually, I am thoroughly enjoying being IV free. I credit this to the amazing CF therapies available to me, my compliance to my treatments, and all of your prayers for my health. I continue to take 30+ pills a day including enzymes to digest my food, vitamins and supplements that my body cannot absorb
4 comments
Read more

The spirit of giving

It’s the end of 2017. That means it’s time to send in those end of year donations. Want to give to some amazing charities actually doing good in the world? I’ve compiled a list for you!  The Cystic Fibrosis Foundation- Obviously, I’m biased toward CFF. They fund amazing research that is saving people’s lives! Don’t you want to be part of that? Not only that, but 90 cents of every dollar goes directly to advocacy and CF research. If you donate to the Cystic Fibrosis Foundation, you know your money is going to be spent wisely and is going to make a difference. Since cystic fibrosis is an orphan disease (that means it’s really, really rare), people with CF rely on your donations to fund research. As well, Congress just cut the orphan drug tax credit, meaning companies are not going to get as much incentive for studying orphan diseases and creating drugs to treat them. The CF Foundation needs people like you to donate to CF research so we can find a cure for CF SOON. —www.cff.org
1 comment
Read more