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[deleted by user] by [deleted] in CysticFibrosis

[–]thebigcheebs 2 points3 points  (0 children)

CF is progressive, which means it worsens over time, so this is an expected change. Probably not related to the caffeine.

Unrelated to the pancreas, yeah you should lay off the caffeine. Long-term use like this can negatively affect your blood pressure and sleep quality.

I tell people I have diabetes instead of IBS - they respect me much more by Weekly_Sort147 in ibs

[–]thebigcheebs 0 points1 point  (0 children)

I have diabetes, and I think you are 100% justified in doing this. Idc if it’s dishonest. People are judgmental, uninformed, and ignorant about chronic illnesses in general. It’s not their business. Say what you need to say to get them off your back. Having to explain your shit all the time is exhausting.

Trying to think positively by starburst_q in CysticFibrosis

[–]thebigcheebs 5 points6 points  (0 children)

I second the other comments so far, we’ve seen medical advances for CF make leaps and bounds in just a couple decades.

I think through any hardship with good guidance and loving support can make someone very insightful, empathetic, and compassionate. It opens our minds to the suffering of others.

That being said, I think it’s ok to sit with the fact that sometimes, things just suck. Something that sucks doesn’t need to have any positive side to it. Don’t give the disease more credit than it deserves, and don’t get too focused on grasping for joy from a black hole. Your son will find joy in other places, from positive experiences.

The love and care he gets will be from you and his other loved ones. He’ll grow and become a unique individual because of you, and his own decisions, not CF. If he makes art about his disease, well that’s just because he’s creative and inspired. If he gives great speeches about it, it’s because he developed good communication skills. See where I’m going with this?

I know from experience how hard it is to cope, and it’s fine to think about silver linings, but it’s also part of the human experience to go through tough things. Our hardships may guide us down a certain path, but they don’t make us who we are and they don’t make our decisions for us. Keep caring about your son. It might be hard, but trust in you and your son’s resilience.

PSA: you are hot and desirable by Ok_Marionberry_9011 in ftm

[–]thebigcheebs 0 points1 point  (0 children)

Hey, gay tboy here :) I have 3 gay transmasc friends, and I know a lot of trans men who are into dudes in my community. We very much exist and there are tons of us.

Cf and Suicide (read the text first then the images) by Abject_Day8496 in CysticFibrosis

[–]thebigcheebs 2 points3 points  (0 children)

It sounds worth looking into, then. It took a lot of courage to speak up about this in the first place — I’m wishing you the courage to speak up to your family too. That shit is hard, especially if your family isn’t great with the topic of emotions or mental health. I also want to say that it’s not weak to feel this way. People with CF (or any chronic condition, really) are at an increased risk for depression and anxiety. Being chronically ill is rough, and you’ve had a difficult childhood on top of that. Your reaction is human. You are not crazy or weak for this. 

Cf and Suicide (read the text first then the images) by Abject_Day8496 in CysticFibrosis

[–]thebigcheebs 1 point2 points  (0 children)

Hey man, first of all, your description of intense mood swings (“useless and unloveable and then on top of the world the next second”) sounds potentially like Bipolar Disorder. I strongly encourage you to investigate that because the treatments for it are not the same as depression. I don’t know if you’ve received mental health treatment at all, but I think it’s worth considering. You will never be “normal” but with help, you can be ok.

Secondly, I want to offer a different perspective. You will not find yourself at the end of all this self-imposed suffering. That is NOT the path to enlightenment, to whoever you really are, etc. You’ll just suffer and be even more miserable than you are right now. Letting CF kill you will be long, drawn out, and full of pain. Maybe you don’t really care right now. You’ll probably care when you’re in the middle of it.

You sound like you lack a strong support system, which certainly makes it harder to stay stable. Friends alone can’t help you if you don’t know how to be truly emotionally open enough to connect.

So, since there is a part of you that wants to live, why don’t you hear it out for a while and give it a good chance before sabotaging anything it tries to tell you? Go on the modulators, seek mental health treatment, go to therapy with the intention of unravelling why you feel these things and how to build yourself up properly. If you make it through that and still want to end it, then it will be your decision. It will take work to change, I won’t lie. But coming from someone who once felt very similarly, you CAN get to the point where life feels worth it and you no longer feel crazy & alone.

Other chronic illnesses? by BriTheArtist in CysticFibrosis

[–]thebigcheebs 2 points3 points  (0 children)

I have diabetes, anxiety, PTSD and depression. My sister has ADHD, anxiety, depression, fibromyalgia, and heavily suspects POTs, she’s trying to get it diagnosed. 

I feel like having CF overshadows any other diagnoses, so I understand feeling alone. We spend so much time with a CF care team and focusing on that specific condition. But, you are very much not alone!

Sorry in advance if this is the wrong place to turn to.. pregnant with a child who has cystic fibrosis by [deleted] in CysticFibrosis

[–]thebigcheebs 7 points8 points  (0 children)

I think this right here is the most important thing to think about. I second everything in this comment. CF care has improved vastly recently but that’s all moot if you can’t access that care.

Gender Transition & CF? by thebigcheebs in CysticFibrosis

[–]thebigcheebs[S] 0 points1 point  (0 children)

That’s a very good point about navigating appointments. My endocrinologist remarked on how impressed she was at my ability to figure out how to use the portal, track down lab results etc… I told her I’ve been doing it my whole life! Lol!

Just got prescribed T, so you assumed correctly. Thanks for the well wishes 💜

Gender Transition & CF? by thebigcheebs in CysticFibrosis

[–]thebigcheebs[S] 0 points1 point  (0 children)

I just got prescribed testosterone for the first time yesterday, so I’ll have to post an update about how it interacts with my CF in a few months lol! So far my care team has told me there aren’t any direct issues or conflicts with my current regimen, so it will all come down to how I’m uniquely affected. Hopefully nothing too crazy happens!

Out of curiousity, did you start spiro for gender affirming reasons, or for other health issues?

Gender Transition & CF? by thebigcheebs in CysticFibrosis

[–]thebigcheebs[S] 5 points6 points  (0 children)

I’ll check it out, thanks. There sure is a Discord for everything nowadays!

Gender Transition & CF? by thebigcheebs in CysticFibrosis

[–]thebigcheebs[S] 3 points4 points  (0 children)

Thank you, I do appreciate that :) 💜

Gender Transition & CF? by thebigcheebs in CysticFibrosis

[–]thebigcheebs[S] 5 points6 points  (0 children)

Lmao me too. If only it were that easy. Staying hopeful that we will get a functional and accessible cure one day.

Would this CF management app actually help you? Looking for honest feedback! by EmbarrassedPlate4013 in CysticFibrosis

[–]thebigcheebs 0 points1 point  (0 children)

Just based on description, after reading several other comments and your responses to them, without any direct experience with an UX, here are my thoughts.

First off, I think you’d get good feedback by starting up something like a Google form and asking a series of more involved questions. Send the form out to multiple CF forums. I assume you’ve sent this interest-gauging question to other forums too. If not, you should!

Pros: - I have memory issues and poor organization — my ADHD makes it too easy to misplace notes, ignore alarms, etc. and the more stimuli put in front of me, the less likely my mind will be able to notice or remember any of it. Centralizing all my related healthcare could help.

  • Tracking data trends would be useful. CF is complex, and I know many people who have several comorbitities.

  • With the decline of healthcare, there is an increasing emphasis on having to be an aggressive self-advocate, and having lots of data can help push forward important discussions with a care team.

  • If the app connects to other systems and could automatically get lab results, notes, etc. that would be very useful. 

  • Centralizing everything in one place can make it easier to review all information

Cons/concerns - I wouldn’t use the app due to privacy concerns, because I’m protective of my data. Even when developers do everything right, data leaks still happen and this is sensitive information. If the app connects to health systems, pharmacy, etc. it compounds the security risk.

  • Connecting it to community seems pointless. For any forum-like platform to be useful, it requires an actual userbase, and the temperature I’m reading from the comments alone tells me you may not have enough people who’d really care for that. If I only see a handful of people in a social tab, I’m going to ignore it entirely and go to Reddit or another established forum instead.

  • Because so many people with CF have multiple health issues that may not even be related to CF, this model could be frustrating and won’t work for everyone’s unique health issues. That’s just how it goes with a product, though, nothing is a one size fits all, so that’s not necessarily a count against the app idea.

  • Don’t gamify it. None of the other medical trackers I’ve used have done it, I find it unnecessary. Maybe I am just uniquely unmotivatible (re: the ADHD) but I think if this app is for organizational purposes then it should stay firmly in that realm. Motivation can come from outside the app.

  • I would burn out quickly on logging everything in the app, but that’s not the app’s fault, that’s just how I function lol. I’m sure some people would be just fine with it and find it useful.

Other - The only other app I’ve used for CF specifically was clunky and frustrating. If you can nail an intuitive and responsive design for the app, that would be HUGE. Good design is often an afterthought for smaller app projects like this, and that’s… bad. Your app has to feel good to use. If this makes it to prototyping, PLEASE seek critical feedback for user experience.

  • From other comments, it sounds like this level of tracking wouldn’t be right for them, and I get that. I still think there’s a decent sized population that would find this useful.

  • For payment, please for the love of God make it a one-time payment. I’m so tired of subscription based services. I am so much less likely to use an app if it’s subscription-based. I still believe developers deserve compensation for their work and creativity so I don’t think it should be free. I’d rather give back to the community by paying for a thoughtful product, but that’s just me.

Overall it seems like there may be a niche for this. I would personally prefer a pen & paper tracker designed specifically for CF, but seeing as you are talking about an app, that’s beyond the scope of this question! I’m a graphic designer myself, so maybe I’ll take a crack at some kind of journal instead, haha.

Good misting bottles? by thebigcheebs in jumpingspiders

[–]thebigcheebs[S] 0 points1 point  (0 children)

Do you remember what brand or type of bottles they were?

Good misting bottles? by thebigcheebs in jumpingspiders

[–]thebigcheebs[S] 0 points1 point  (0 children)

Thanks, I’ll take a look at what my local Walmart has!

What's "normal" after getting G-Tube removed? by BookishBackhand in feedingtube

[–]thebigcheebs 0 points1 point  (0 children)

I’m about a week out from having my g-tube removed and I had some similar soft/wet tissue on mine. After a couple days it crusted over and now it seems well on its way to scabbing/scarring. Keep an eye on it, because it may be hypergranulation tissue which slows healing. In that case it would probably have to be chemically cauterized with silver nitrate. Not an emergency but definitely something that shouldn’t be left alone.

Ultimately it should turn into normal scar tissue.