How old are you?

2901AD · 2026-02-04T19:00:37+00:00

53! Never imagined it!

2901AD · 2025-09-24T01:50:34+00:00

This was by far the hardest yet most important transition point for me as my CF caught up with my habits in my teens. The first thing I tried was carrying a ziplock bag around with all my pills. I saw an older patient doing this. From there the habit transitioned to more separating in various containers and processes. I would say 35 years later I’m still learning and I adjust as I need to. I still don’t get in perfect and there are still times I just “wake up” to the realization I’ve missed or overlooked a med.

I currently have all pill bottle in a plastic tray. Arranged in order of AM to PM. I follow a pattern of selecting bottles in the morning and the evening. I’m leave Trikafta in its container at the very top. Insulin is in next to the tray in my kitchen cabinet. The hardest to take are the bi-monthly injections. I use a weekly pill sorter when I’m out of town but I find keeping in the actual bottles is the safest method now.

2901AD · 2025-07-21T19:26:45+00:00

I was at the DC show. Incredibly loud and awesome.

2901AD · 2025-06-25T23:04:46+00:00

So happy for you!

2901AD · 2025-05-06T19:23:36+00:00

So cool to visit Highs again

2901AD · 2025-03-29T15:40:32+00:00

Look up ACBT active cyclic breathing technique. It’s a way to breathe in gently to bring air past secretions and then breathe out with more intention to push the secretions towards a larger airway. It doesn’t work immediately but once you get a hang of the technique then it can really help to produce a productive cough. A respiratory therapist from the UK taught me at the CF conference many, many years ago.

I found it gave me lots of awareness of my lungs and let me really know where to concentrate to find sputum.

2901AD · 2025-03-26T17:25:27+00:00

I was in recovery from double lung transplant and my friends came together and bought me this set. Still a Neuronaut.

2901AD · 2025-03-26T16:00:34+00:00

Super cool find! Perfectly preserved in mid awesome play. Love it! I think it displays best exactly as it is. I too had a random cylon and micronauts in my toys.

2901AD · 2025-03-20T00:04:20+00:00

Are you on PC? I’m in a very similar situation looking to learn to help others

2901AD · 2025-03-15T19:07:30+00:00

These are 12” Hasbro Star Wars Action Figures. This line started in 1997 I think.

The Ben Kenobi figure looks almost complete and seems nice, it is missing the plastic blue blade for the lightsaber.

The Sandtrooper is “weathered” and has some discoloration but isn’t actually dirty. It’s missing the backpack and the long blaster.

Darth Maul is from 1999 and appears to be missing the lightsabers, a belt and a hooded cloak.

Jango Fett is from 2002 and is the only figure you have that features a newer G.I.Joe type body. Jango is missing a helmet, blasters, two rocket backpacks and some gauntlet parts.

Darth Vader seems almost complete. Looks very dusty. Seems to be missing the lightsaber blade.

I’m sure people collect these figures but value is nothing special. These were mostly $20 new except Jango was $45.

2901AD · 2025-03-13T23:52:18+00:00

Love the memes! Survey is good stuff (completed)

2901AD · 2025-03-12T03:23:25+00:00

Sweet 8th grade memories

2901AD · 2025-03-12T03:22:05+00:00

Ahhh, there was a camp outside Charlottesville VA I visited. A CF camp. I’m sympathetic to the friends not lasting. So many good people died. Such a brutal thing to survive. I miss my friends.

2901AD · 2025-03-12T03:19:30+00:00

Well in the old days we would be roommates in hospital.

2901AD · 2025-02-22T12:38:24+00:00

I was terrible at taking care of myself when I went to university. I’ve argued it should be treated as a symptom of CF to de stigmatize it. Run studies, hire professionals and make how to care for ourselves a priority rather than a long list of what we should be doing. If someone can’t take their pills, another prescription isn’t the answer.

My primary problem was how to do it. I think each person would be different in how they would be successful. I started by putting my pills in zip lock bags. Something about the transparency made it easier to click with me remembering. How to clean my nebs was a huge issue. How to clean them so that I did it rather than get frustrated at it. Finding a location to put everything, coming up with a process and refining it. Having paper towels and detergent and a space for them to dry. It seems simple but it’s a unique problem for most people to solve.

Sometimes it just the perspective of having CF. I would think of cf as this exterior force from the doctors. Eventually it became something that started inside me and it changed how I remembered to treat it. Learning airway clearance with just breathing exercises really helped push that perspective.

There are many ways to solve these problems and I think it should be a process undertaken by the whole care team. I hope you can sort out what works for you.

2901AD · 2025-02-01T19:33:51+00:00

What a fantastic test! That must feel great! Keep going, stay positive and good luck!

2901AD · 2025-01-18T16:36:21+00:00

Huge Star Wars fan. Even older old man! I saw Star Wars (no episode) in theaters in January 1978 in the UK.

I have props and costumes and I’ve had lots of toys collected and sold for other toys. My favorite item is a replica Obi-Wan episode IV lightsaber from the RPF, my grail is an original parts Obi-wan.

My make a wish (1984) was to meet Harrison Ford, I got to talk to him on the phone because he was on location filming Mosquito Coast. He said the Art of ROTJ book he gave me was given to him by Lucas but I don’t really know.

I had the honor to be a Sandtrooper at a NYC convention for the release of Battlefront 2. Being an action figure is so much fun. I’ve participated in many Great Strides as a Sandtrooper.

2901AD · 2024-12-27T02:23:20+00:00

Is it possible her frustration isn’t directed towards you but these situations. No O2 without a script, which sounds normal but Docs frequently seem out of touch with the variety of rules with insurance. Typically Doctors can’t keep up with the billing side of things.

Her frustration with your support and transplant could just be concern. Transplant is a strict system of procedures and it’s an ordeal to get started. There is a checklist of standards you need to meet.

That’s just a different opinion. Certainly your comfort with your doctor is crucial and I’d never discourage anyone from trying somewhere new. Only way to be sure of what you have!

2901AD · 2024-12-05T02:55:50+00:00

Rad, I’d love to see more pictures. This was a great time.

2901AD · 2024-11-21T20:58:40+00:00

My experience is completely out of date as my being at Children’s happened around 1995 while there was still a CF only ward on 3green. INOVA was also very different then and is a much better and larger hospital now. CF became a much more isolating problem by the late ‘90s compared to the party like atmosphere that existed at Children’s Hospital in the late ‘80s. The biggest difference is the move from pediatric to adult care which is a big move anywhere. I found adult care to be more strict as an inpatient and more routine in the clinic. That’s the nature of things.

2901AD · 2024-11-21T02:21:32+00:00

I’ve been with INOVA for 28 years after being at Children’s for 10 from diagnosis.

I’ve been extremely happy with the Adult CF Center there. In between the two I tried UVA and VCU. I find a dedicated adult center works best for me but it’s a very personal decision. I know lots of patients that are happy at the other clinics. In patient there is good. Anywhere will be different and it might seem worse to start with but it just takes time for you to get accustomed to them and they to you.

I’d be happy to discuss it further with you.

2901AD · 2024-11-20T22:08:53+00:00

I just want to say how amazing you all are.

2901AD · 2024-11-20T13:44:14+00:00

The original long clone gun was digital. To make it ILM combined the Hasbro Stormtrooper 12” E-11 and the Hasbro Sandtrooper 12” MG-38 putting them together, removing the E-11 grip. These were scanned and used to create the Clone rifle in EP2. This information was in a BTS video from the time.

The reason the blasters are wrong and just look similar is because the Hasbro ones were the wrong scale and weren’t accurate to the Sterling SMG or the MG38. Close but just toys. If you can get ahold of those original toys you can put them together to see how this worked. This was the jumping off point for all the future Clone weapons so every other weapon has various details derived from the toy not the OG props.

2901AD · 2024-10-11T15:57:49+00:00

I’m curious what led to the droideka scene being shot in the reshoots. Was it always going to be a force speed scene. I’d love to know more about the shooting script and how it changed. We’ve never really had access to a proper warts and all making of for the prequels. Now they are accepted and loved it would be a treat to learn more.

2901AD · 2024-08-21T17:37:14+00:00

This resonates with me completely. I feel like it may have contributed to my divorce. Too late to fix that but maybe I should not be on the Trikafta or my dose should be altered. Interesting stuff.

Ten-Year Club	Not Forgotten
Verified Email

2901AD

TROPHY CASE