William
Forum Replies Created
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I constantly grow pseudomonas! It’s been a pain in the butt as it feels like it’s always popping up, but I will never stop trying to get rid of it.
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I’ve had social workers come and go for the most part since I was a child. The main one I’ve always had is one of the kindest people I know and is always willing to go above and beyond for me. Until a few months ago, we had two. The other one we had I really bonded with as he was in the office more frequently. We had a big brother/little brother relationship and I miss him dearly!
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Jeanne, I’m so sorry to hear about your issues this past November! I am, however, happy to hear you’re back on the mend. I know from personal experience how hard it is to gain weight (I struggle constantly), but four pounds isn’t anything to slouch at. Keep up the good work!
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I am a pop culture/sports/all consuming media nerd. I just finished Sellout by Dan Ozzi and before that was The Nineties by Chuck Klosterman. I’m a huge fan of podcasts! Every morning I listen to The Daily from The New York Times, The Bill Simmons podcast, and a variety of basketball/football podcasts. As for TV, my wife and I are binging Better Call Saul and it’s fantastic. Growing up an only child definitely influenced how I’ve consumed media and it’s definitely a form of comfort for me.
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I think for me, a highlight this year was being able to travel out of the United States for the first time and being able to see the beauty of the world in another country. A goal in the upcoming year is to stabilize my blood sugars, travel more, and write even more. Yes, I still believe in the Oxford comma.
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This year, I’ve done virtually all in-person visits. The last time I can recall doing a telehealth visit was right before Christmas last year. It’s certainly helpful, but I think every six months is good for an in-person visit if your health allows it. I still see them at least three or four times a year, depending on vacation/sick time that’s available.
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My Mom and Dad always did a terrific job when I lived with them, making sure I was always taken care of. They still help out whenever I need their help with something like insurance, because dealing with insurance will always be a little terrifying lol. My wife does a phenomenal job of making sure I stay on top of what I need to do and is always helpful when I need assistance with day to day activities if I need the help.
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I definitely find myself washing my hands more and helping clean around the house some more as to get rid of germs. In regards o planning for these special events, I just try to be aware of how I feel that day and that’ll determine how long I stay at an event.
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We’re not faking it. Yes, we’re this tired. Our bodies are internally fighting all of the time and that power struggle will wear anyone down.
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My doctor is great. I’ve been a patient of hers for about 25 years now. I’m comfortable talking about any and everything with her. Outside of her there’s been a rotating cast of people that have worked for her. Some I have found to be more trustworthy and helpful than others, which happens. Ultimately, I consult with my doctor on any major final decisions.
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Just get the dang vaccine.
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Be up front with TSA that you have a medical device and medicine with you. Also, it’s really important to have a Doctor’s note with you. Yeah, they’re unable to look at the letter, but having a physical copy on hand let’s them know it’s serious.
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It was hard growing up. I was always so skinny and had trouble putting weight or muscle on. Now, into adulthood, it’s easy for me to fluctuate between gaining and losing 20 pounds (believe me, losing the weight isn’t as bad as it may sound). But again, I’m also more comfortable with myself in my late 20’s opposed to 10 years ago when I was really struggling with body image. I’d see these guys I went to school with or guys I hung out with outside of school and they were muscular and getting girls. That’s hard as a teen and I knew it stemmed from CF! It definitely has. That’s why I’m a comedian now.
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I would say a cure found means that we are able to, physically, live more normal lives. The mental aspect is what is truly fascinating to me. There’s obvious trauma that comes along with having a terminal illness. That would definitely require a lot of therapy.
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1) Yes. My gallbladder went septic earlier this year. I also experienced pain in my appendix, which was caused by inflammation.
2) No
3) Surgery! I had my gallbladder and appendix removed two months later. -
@luisa-palazola this is the website my doctor showed me a year ago https://www.cftr2.org/welcome
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My mutation is R560T/621+1T
I was diagnosed at 3 months old in January 1993
And according to that one website where you can find out about mutations, there are only 10 other people out there with my exact mutation so, I’d say it’s pretty rare. -
I’m not a fan of it, which is ironic because Holden Caulfield is my favorite literary character of all time and this guy is Holden, but with CF. While I do respect and appreciate the filmmakers for reaching out to people with CF, I have a feeling this will still be botched somehow. I also think they should’ve given one of the leads to a person with CF.
I hope that they portray CF with care and some accuracy. It’s Hollywood so, I know that there will be some aspects that are dramatized and I fully expect that. I don’t expect them to be coughing up blood or using the bathroom every 10 minutes, but I hope for some accuracy.
I just want to go back to my prior point and say that I wish people with CF were given an opportunity to star in the movie. I think we need some form of equal representation across all platforms and across all sects of society. We need to make our voices be heard. I stumbled across an old poem I wrote when I was in college about being represented in media. Red Band Society had just seen its brief time on air and I felt that it wasn’t a realistic portrayal. I just hope that these media conglomerates can let our voices be heard because personal blogs can only go so far.
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I think that mental health is severely overlooked by the foundation and I’m not totally sure that that’s their fault. At the end of the day, their focus is on trying to cure the disease. However, it would be nice for them maybe have a partnership or something out there for those with mental health (because I’m sure it’s a lot of us) get the help they need. The crux of living with a disease is knowing that one day it’ll kill you. Whether it’s at 37, 23, or 65+. And for young people, especially those of us who’ve grown up with social media, those triggers are maybe more present than ever. It’s allowed us as people to be global, and while there’s a lot of good that comes with that, there’s also negatives such as cyber bullying and drowning yourself into the abyss of late night reading and paranoia.
When I was at my lowest, the social worker at my clinic recommended me a therapist to see and I went to him for a while. If someone feels that they need to see a therapist or a psychologist, I would talk to the social worker at your clinic so that they may put you in touch with a professional.
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Life, like the seasons, is always changing. We absolutely should embrace it!
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Thank you Timothy! We all should be grateful that we’re still on Earth, living and breathing. Getting older is a gift.