u/Violetteotome

I’m in the hospital and having an extremely difficult time. I’m on very intense antibiotics, etc. I am losing hope and I not sure I will ever get back to baseline. Usually when I am down or going through something, I will use perfume as a pick me up and buy a new one to celebrate an accomplishment. Are any of you the same? And if so, what are you wanting next?

I’ve only been admitted once in my life and this is the second time now. I have some basic questions I need answered.

1. I am really struggling with IV antibiotics. It’s extremely uncomfortable and I can’t handle it. I am getting it in the spot where you would normally have blood taken, the crook of your arm. It’s just unbelievably sore. They tried it in each arm and had to remove it both times. They tried at the top middle of my arm which was even worse. I didn’t even attempt my hands. I’m considering a picc line like I had at my last admission but if I can avoid it that’d be good. Any ideas to cope?
2. None of the nurses or staff at this hospital wear masks in my room. Sometimes they don’t wear gloves or they aren’t like… visibly fresh gloves (like if they’re just popping in) and they never really put on their little aprons like they did at my first hospital stay. Is this acceptable or standard?
3. The hospital ward I’m in is not solely for CF patients. It has cancer patients, pneumonia patients, COPD, etc. It also has other CF patients. I’m in a room by myself though. Is this normal?

Basically the title. I know there tend to be a lot of these threads, but I’m frankly too exhausted to comb through them. Any recommendations would be greatly appreciated. I love all kinds of food. If there is a better place for me to post this questions let me know and I’ll go there instead. Thanks!

Edit: it’s the Western General, but I think my husband would be willing to go a bit further if it was particularly good (I’m very lucky, he’s a saint). Not really sure why I’m being downvoted

This question was posed in another sub, and I'm certain it's been posted here, but I always love reading other peoples responses to it. If you lost your entire collection tomorrow, what would you repurchase? (Please try to keep it to one scent, though I know I am about to break my own rule so... two max people!)

I would choose:

The Favourite (my wedding perfume) and Violette de Molinard (the first perfume my husband gifted me). I would buy them both again immediately.

Violette is my signature perfume. It’s a bright, fresh, candied violet with green apple. It’s a youthful, whimsical, and sugary gourmand. My husband bought it for me at the Molinard store in Grasse, France. It was part of our first time meeting. When we left the store, I sprayed it on. We tucked into a cobblestone alleyway, with the rain pouring down around us, and he kissed me there. It was a moment I’ll treasure for a lifetime. The scent always brings me back to that kiss and the taste of passionfruit macarons.

As for The Favourite, the reason is more complex. For most of my life, I felt unwanted—the black sheep, someone who was difficult to love, never really anyone's first choice. My husband is the first and only person in my life who has seen me for ME, and loves all of me. On our wedding day, I was his favorite, and he was mine. Now we belong to one another forever. That perfume was a way of immortalizing that magical feeling of being chosen. I originally debated heavily over whether to wear this as my wedding scent due to its name. However, I felt like it gave me a certain courage to take up space and say “yeah, I deserve this, I AM loveable”. It allowed me to claim a word that never felt like it could belong to me. Now when I smell it, I think of how hard he was smiling on our wedding day.

Background: I am on trikafta. My lung function in the past years since I started it has been stellar. I have stopped all airway clearance since being on it, which is about 6 years (since 2019). My PFTs during this time remained very high, usually 105%-117%.

I had a CF appointment last week and my lung function dropped for the first time by about 20%. It went from 117% to 98%. This meant I needed to get back onto airway clearance asap. I’m also on two decently strong oral antibiotics (cipro and amoxicillin).

I’ve restarted albuterol, hypertonic saline (7%) and pulmozyme for the first time in six years. I’ve been doing them all through a nebulizer. No vest or pep or IPV yet but am starting it soon. I imagined when restarting it that it would be a walk in the park. I used it for 22 years and I’m healthier now than I was then. How bad could it be?

Well, it’s fucking kicking my ass. I’m having a pretty severe reaction I think but I’m white knuckling it and trying to regain the tolerance I clearly had before.

I’m having severe issues with the following:
* shaking
* rapid heartbeat, heavy heartbeats (pounding heart to the point it’s alarming/uncomfortable)
* feeling weak
* feeling faint
* feeling nauseous, like I’m going to puke
* feeling a sensation like I need to hiccup or on the verge of a hiccup, but unable to

The heart symptoms are the worse and most prominent.

I notice it most around either the albuterol or hypertonic saline, but I’m leaning towards the latter. I am exhausted after every treatment and have to lay down. I’m not coughing at all though and producing no sputum. Has anyone else had these issues?

I am not planning on telling my doctors this because I am determined to reacclimatise myself and I don’t want them to stop prescribing these three solutions. My UK team is shitty like that.

I am going through a pretty significant health crisis. I’m originally from the USA, but have moved to the UK. I am grateful for free healthcare, but I am experiencing significant cultural strain.

In the USA, it is encouraged to discuss options with your doctor and to advocate for yourself. I understand the NHS is under significant strain, but I am simply looking to get equal quality care to that which I received at home. I have made concessions at every turn here with my NHS team to be flexible and to try to not be seen as difficult, but I am now paying a very steep cost.

Please. This feels very “the doctor tells you what to do, I may take some things you’ve said into consideration, but you will do whatever I feel is best and I’ll cut corners where we can”. There’s also a very British “chin up, could be worse” attitude. The entire approach is very reactive rather than proactive.

And before it starts, yes, I’m beginning to look into changing cystic fibrosis care teams and I am also looking into private healthcare.

Please. My health is in a very precarious position. I don’t know what to do anymore to be listened to. No one will listen to me. It’s been three years and I have not even been met halfway.

I am having some significant issues with my team and I am extremely angry and frustrated with a slew of issues. I am originally from the USA where my CF care team went above and beyond for me.

• I do not have access to ANY of my medical records. None.
• Alyftrek has been available here over a year. It was never discussed with me as an option or non-option. Not even once.
• In the three years I have lived here, I have had zero sense of my microbiology. Zero. My clinic will ONLY do sputum cultures. If you do not produce sputum, no tests of any kind will be performed. Since I do not produce sputum and haven't in the past three years, I have gone three years without knowing my microbiology
• Patients are not immediately put into rooms at clinic, doors are left open. There is a period of loitering, where all of us are together and exposed to one another

I could go on.

I have cystic fibrosis. Today, I got some pretty bad news.

I have been with my husband for eight years and we’ve lived together now for almost three years. I moved across the world to be with him. When we first met, my health was not necessarily bad, but the future was extremely uncertain and very precarious. New, revolutionary drugs were coming out, but their full success was unknown. We weren’t sure how effective they would be for me, and I didn’t know how long I would live. When we started dating, I warned him I might need an oxygen tank or a wheelchair someday. I warned about how my disease could someday diminish all the beautiful ways in which he could experience life. I told him I would probably die very young. He didn’t flinch. He didn’t even bat an eye.

As the years have passed though, I’ve been lucky. Three months ago, we finally got married. It was the most sacred, beautiful day of my life. And my health has been great overall… until today. Today, was the appointment I see in my nightmares, always lurking on the periphery and waiting to strike. I’ve been put on very powerful antibiotics and we are unsure if I have colonised a new strain of bacteria, or what that bacteria may be. My lung function has dropped by 20%.

Today he has done nothing but bend over backwards for me. He has driven me to and from appointments, sanitised my medical equipment, made dinner, brought me tea, helped me up and down stairs, pick up my new meds…. The guilt I feel is immense. The times I was afraid of have now become reality. He is also working so incredibly hard to get his degree in civil engineering and he has a test in three days. Taking care of me is preventing him from studying.

I am scared for myself. I feel myself being plunged back into a black hole of health uncertainties. I feel chained back to my old medical equipment again and part of me feels I’d rather die than lose the freedom I relished in for the past few years. I am grieving that loss of autonomy. I’m scared I may lose my job, as it’s dependent on travel, I just started, and I cannot travel while undergoing this intensive treatment. I was previously unemployed eight months and on the heels of a wedding, we need money… My husband is a beautiful, kind, wonderful person and now I’m crippling him. I’m taking him down with me.

I fucking hate the clinic. Got some bad news today. Thinking of blowing some money on myself to try and cheer myself up. Idk.

I applied from the UK for proof of Canadian citizenship through descent and have not heard back for basically five months.

So I live in the UK, but I’m a US citizen. I mailed my printed out application (I was unable to apply online) for the certificate of citizenship to London on March 28, 2026. I got confirmation from the courier that it was received in London on March 31, 2026.

I have never heard from literally anyone ever since. No acknowledgment that it has been received, no pending status, nothing.

I know processing times are exceedingly long right now, but I am also an unusual case in that I am applying from the UK AND it is a physical application. I’m not sure what to expect going forward or if it’s even being considered.

I just want to know if it’s been lost in the mail or even received. Is now an appropriate time to pursue and ask or should I continue to hang tight and wait?

I just wanted to vent a minute here. I don’t have very many hobbies. I don’t drink, do drugs, party, or anything like that. I have always tried to do the “right” thing. I only really have four vices in life: perfume, gardening, baking, and reading.

I didn’t always garden. I lived most of my life with a severe (once terminal) disease that expressly forbade me from interacting with soil and to avoid manure, showers, molds, etc like the plague. Given my fortunate health improvements and the purchase of our first house ever, I have finally been able to try gardening and I’ve found it to be restorative and meditative.

I don’t know how other people feel here, but the state of the world is overwhelming and, oftentimes, feels both exhausting and frightening. Gardening can feel like a stupidly small, yet meaningful way of granting me a reprieve. My brain kind of turns off, and being able to physically work with my hands, see an immediate impact, and feel some joy from the colours or smell of the flowers gives me a feeling that I have autonomy and control over my life, and maybe even over some of the outside factors influencing it. In our ever-changing world, living expenses feel higher than ever and it seems like everything is on fire (literally and figuratively). It makes these simple pleasures that much more essential, but also that much more out of reach. Buying plants, tools, etc is not cheap!

Gazing out at our roses, our apple trees, our salvia, our catmint, and our tulips does always bring a smile to my lips. I am dreading the fall and winter, which will be here before we know it.

Is anyone else struggling lately?

I just wanted to vent a minute here. I don’t have very many hobbies. I don’t drink, do drugs, party, or anything like that. I have always tried to do the “right” thing. I only really have four vices in life: perfume, gardening, baking, and reading.

I didn’t always garden. I lived most of my life with a severe (once terminal) disease that expressly forbade me from interacting with soil and to avoid manure, showers, molds, etc like the plague. Given my fortunate health improvements and the purchase of our first house ever, I have finally been able to try gardening and I’ve found it to be restorative and meditative.

I don’t know how other people feel here, but the state of the world is overwhelming and, oftentimes, feels both exhausting and frightening. Gardening can feel like a stupidly small, yet meaningful way of granting me a reprieve. My brain kind of turns off, and being able to physically work with my hands, see an immediate impact, and feel some joy from the colours or smell of the flowers gives me a feeling that I have autonomy and control over my life, and maybe even over some of the outside factors influencing it. In our ever-changing world, living expenses feel higher than ever and it seems like everything is on fire (literally and figuratively). It makes these simple pleasures that much more essential, but also that much more out of reach. Buying plants, tools, etc is not cheap!

Gazing out at our roses, our apple trees, our salvia, our catmint, and our tulips does always bring a smile to my lips. I am dreading the fall and winter, which will be here before we know it.

Is anyone else struggling lately?

I just wanted to vent a minute here. I don’t have very many hobbies. I don’t drink, do drugs, party, or anything like that. I have always tried to do the “right” thing. I only really have four vices: perfume, gardening, baking, and reading.

I don’t know how other people feel here, but the state of the world is overwhelming and, oftentimes, feels both exhausting and frightening. Fragrance feels like a stupid, yet meaningful way of allowing me to be someone else, escape somewhere else, or remind me of happier times. The irony is that with our ever-changing world, living expenses feel higher than ever, making simple pleasures that much more essential, but also that much more out of reach.

Is anyone else struggling lately? How do you use this hobby to cope, if at all?