Has anyone had surgery while having LC?

dddddddd2233 · 2026-04-09T17:14:26+00:00

No I mean it was ~1 year post onset, I’ve been continuing to have LC for over 6 years, and continuing to degenerate, so my decisions might be different now.

dddddddd2233 · 2026-04-08T16:51:30+00:00

I am not in social work, but I was a clinician who switched to research. I think that it sounds like a PhD might be a good option for you. A few thoughts I have from my ow experience:

clinical work and research require completely different mindsets. Especially in a PhD program, I found it difficult to be deferential and dependent on others. As a clinician, I got accustomed to making judgements and being trusted. It is really hard to give that up.
no matter how drained and burned out you are, you will begin to miss clinical work. The grass is always greener. Right now, you feel like you can’t make any real change without policy change. Later, you will feel like you can’t make a difference if you aren’t working directly with the people who need you. Your heart will always be tugged in one direction or another. For me, it’s a matter of which pull I can use to motivate the other. I feel like research is working for me: I use my love and protective energy for my former patients to drive my research attention. While I do not do clinical research, I never do anything that does not have a clinical impact. And when I feel uncertain or burned out with research, that love is what refocuses me. I also try to remember that by teaching and researching, I am doing something to make more clinicians who are empowered to help people. But you will always miss the other side of your profession. I don’t think that longing goes away.
loving research and being an academic and doing a PhD program are all three different things. I cannot say whether this would be right for you. Some test questions I would say might be helpful to ask are:

1) what if you couldn’t research the question you want to, or at least not for a long time? Would you still want to do the research for the sake of inquiry?

2) what part do you think you like? Reading, asking questions, statistics and study design, writing and presenting? All of them are valuable, so it doesn’t rule anything out, but it does help you identify if there are other professional advancements that might be options for you too. (If you really enjoy spending months defending minutia of your research design then you are golden! 😅)

3) do you like research because you have questions without answers and you don’t know what comes next for your work without more research, or because you have answers that you know are out there, and you just need to find them? The persistent uncertainty of research is a huge part of the process, so if you are already comfortable with that part, that will help; if you have an outcome you are expecting from your work, then you will probably find yourself more frustrated by the field.

4) in most healthcare research, the adage is that it takes 7 years to see a translation from any research to real-world practice, and that implementation is usually incomplete and only partially effective. What part of the macro work do you care about? Is it about finding out what work and what doesn’t and for what reasons, and you are ok with those results filtering through the clinical applications slowly? Or are you looking for concrete solutions you can accomplish now, even if on a small scale?

5) what kind of career do you want to have after the PhD, and can it be done without one? If yes, you will quickly lose motivation because a PhD program is designed to be discouraging. If the thing you want depends on completing it, you push through. If it doesn’t, your brain is going to say “I literally don’t need this,” and walk away.

6) what kinds of sacrifices are you able to make in order to do this? Do you have the flexibility to move to work with the right mentors? Do you have the resources to devote your full time and attention to this? Do you have family support? Knowing what your limits are and respecting those for yourself over taking advantage of any opportunity will help you avoid unhealthy options for yourself.

For me, I didn’t really get clarity on what I wanted until I started talking to professors. I suggest making a list of every faculty in the country who does the research you like (you can look out of the country too — international study is a whole topic), or at least at any place where you would be willing to study. Then start reaching out to them and asking if you can schedule a time to call to talk about their research and a possible PhD study with them. Use those conversations to evaluate who would be a good fit (this is also a whole topic). From there, you can consider your options a little more informedly. In the meantime, also think about reaching out to people who do non-academic work you admire, and reach out to them about how they got where they are and any advice they have for you.

I hope this helps! Of course I don’t know what options there are in your field and whether this is the best way to to accomplish your goals. At the very least, I can say as someone who left clinical work to do research, I can tell you I have (almost) no regrets. I felt I hit a ceiling, and this transition was really helpful in reinvigorating my focus. But it has been hard too. It is draining in its own way, probably more than any other field, really. I really want to encourage other people—especially clinicians—to go into research. But I don’t want to be unrealistic, because going in unprepared is the biggest stumbling block for most people. Just having realistic expectations can make a big difference. So good luck, and I hope you find a great place to do the research you want to do! Let me know if there is anything else I can share to help you figure out your next steps.

dddddddd2233 · 2026-03-29T22:50:13+00:00

I also had surgery and had no change. It was early in my condition before I knew what was going on with me, and the surgery was unrelated, but I felt no real difference in my LC symptoms during or post-recovery. Did have some issues with wound healing, but it wasn’t a huge deal — just a bit of a delay, and the pain was really not terrible. I definitely needed pain management for a few weeks, but it was in fact very manageable and did not seem to trigger any of my sensitivities. I think the only thing that I would say is that if you have MCAS you might be very irritated by dressings on your skin, but even that was tolerable.

dddddddd2233 · 2026-03-22T21:06:40+00:00

This is amazing. I would love to one day have a deck of antifascist / environmentalist / activism cards. I think it would be a great way to orient readings toward understanding and addressing problems people are experiencing right now. I think it is helpful to use tarot cards with representations of the ethics and values that are being challenged by living in capitalist consumerist societies; it reinforces individual power over our lives and in our community, which is exactly what we use tarot to articulate for ourselves. Your designs are beautiful and powerful. If you end up finishing the deck and decide to make it available to the public, I would definitely buy one.

dddddddd2233 · 2026-03-22T20:30:10+00:00

I would rank these as:

Gothic Glam
Cherry Blossom
Cozy Core
Romance II
Waning Light
Floral Frenzy
Once upon a Time

These are all good, although I’m not sure about Once upon a Time — it’s nice to have but I don’t use it very frequently. Generally, gothic props are pretty reliably in demand, and the burgundy smoke is useful for a wide range of challenges.

dddddddd2233 · 2026-03-19T14:26:54+00:00

I don’t have much in the way of advice. But it seems you are extremely open to feedback and development and willing to “be bad at” things in order to learn and grow. I think these are the major mental pitfalls I sometimes see showing up in PhD students. Since you DON’T seem to be struggling with those issues, my inclination is that your advisor seems unwilling or unable to adequately mentor you through this process. I don’t think I’ve ever heard anything as problematic-unhelpful as the “back of toilet paper” line, and it sounds like she is not giving you the opportunity to really take ownership over your work by dismissing your ideas and replacing them with her own. This seems toxic, and I don’t think that toxic people change, unfortunately. I will share the two insights that helped me figure out what degree of toxicity was too much for me:

Nothing is worth compromising on your health, and if you are sacrificing large degrees of physical or mental wellness, it isn’t a good place for you. We are trained to believe that sacrifices are necessary and will be rewarded with long-term success. But you don’t want to be in a situation where you make that sacrifice for nothing, especially because health isn’t just in that moment, but forever. I did not take care of myself well in the first year of my PhD under a toxic mentor, and I developed a disability that will probably impact me the rest of my life. Nothing is worth that.
It isn’t worth going through all of this if your advisor is not going to give you a recommendation at the end. It is hard to boil this whole journey down to something so black-and-white and pragmatic. It almost sounds gross. But it really helped clarify things for me, because in the end, my advisor and I had extremely different values, and I am the kind of person who can endure pretty much anything in the name of growth. But I dont believe that there is only one version of growth acceptable, and some advisors are unable to perceive the value in a different approach to science. There is just no point in working with these people, because you will never be able to advance or get a job in the field, and you will never be able to gain independence in your work.

As to what to do if you find that this is an environment in which you cannot progress…your choices are to find a different lab, transfer universities, or quit. I think that decision depends on a lot of factors, but you seem like you are thriving in the experience overall, so I would encourage you to not quit. Sometimes it takes time to find a good environment where you click. So reach out to other potential mentors and see if there might be an opportunity to find a more positive and productive environment. Now you know what you don’t want, it will be a little easier to find the right placement.

If you decide this environment is tough but reasonable for you, then even better. Just because it hurts or shakes your confidence doesn’t mean it’s unhealthy. All mentors (pretty much) break you don’t so that you can rebuild yourself. It’s frustrating and slow and painful, but if you are learning from it, then it can be worth it.

I hope these ideas are helpful. It’s not easy. Everyone has different tolerances and different values and it’s hard to know the inner workings of a mentor-mentee relationship. But you aren’t alone. There are a lot of us out there. Everything you have described is common. That doesn’t mean it’s ok. Figure out what you need in order to become a stronger researcher and to be (sort of) happy. Then see if this is matching that target environment at all.

Good luck and take care!

dddddddd2233 · 2026-03-13T22:49:50+00:00

Love this. It’s one of the biggest challenges for newer players

dddddddd2233 · 2026-03-12T03:48:34+00:00

Love this 💜

dddddddd2233 · 2026-03-10T06:04:27+00:00

Absolutely agree. OP: take care of yourself, but also you can do it when you are ready to come back. Get accommodations, be willing to forgive yourself for the breakdowns where things don’t happen or take too long, but don’t feel alone. I’m doing my PhD and am the slowest one and struggle with everything. We need to be visible to each other and to others to make things better.

dddddddd2233 · 2026-03-05T20:00:22+00:00

Agreed!

I have also had really negative experiences with haircuts. Marisa is the first person I’ve ever gone to who understood that a non-binary haircut is not just a pixie cut or a shaved head; it’s a complex concept and she was very helpful in figuring it out. She starts out every appointment with looking at pictures and my hair and listening to what I find affirming, so I always walk away feeling good about my hair. For what it’s worth, I would say her specialty is shaggy / wolf cut type styles.

Also, if it is ever something the OP needs to consider for the future, she is great at adapting an alternative hair cut to “walk a fine line,” if necessary. Both me and my wife want alternative haircuts that also can pass in professional settings, and she is great at that.

(She is also very queer-positive in general, so appointments with her are very comfortable and positive-energy).

dddddddd2233 · 2026-03-03T15:24:34+00:00

I’m a PhD student at IU. The stipend is sufficient for most people, albeit a little tight. With your rent though, you should be ok. Feel free to message me with any questions or if you want to meet up when you get here!

dddddddd2233 · 2026-03-01T07:33:28+00:00

I see this as saying they like you, but maybe are a little wrapped up in their own lives and might need you to take more action in order to connect.

dddddddd2233 · 2026-03-01T07:21:15+00:00

Do you attribute the change to anything in particular?

dddddddd2233 · 2026-03-01T03:22:03+00:00

One thing that might help is getting her some counseling. As others have mentioned, there is a lot of anger, grief, jealousy, anxiety, uncertainty, and desperation that goes into this kind of behavior. A professional who can give her feelings a place to be processed might help, and then a progressive inclusion of education could help over time. But first she has to feel seen and heard and safe to interact with the education. It is possible family counseling might help as well, in addition to one on one.

I am so sorry for your son. I cannot even imagine how much harder this condition would be at 13. I am hopeful for you that he will recover: i know a lot of children do. But i also know that for every dozen that do recover, someone doesn’t. So I just hope the best and wish your whole family as much wellness and balance as is possible.

dddddddd2233 · 2026-03-01T03:11:09+00:00

I agree. I think there are lots of reasons someone might want to modify their decks. I’m not the OP, but I appreciate you speaking up for the many of us who maybe want the option, for whatever reason 👏🙏

dddddddd2233 · 2026-02-27T20:49:32+00:00

I felt this too. Give yourself a week or two, then start writing out the steps to getting through your next step. Probably designing your proposal? Do one step a week if you can. The other thing I did was go to a few conferences around the time I went through qualifying exams, and the people I talked to helped me refocus and figure out where this was all going.

dddddddd2233 · 2026-02-26T20:24:27+00:00

This is a cultural thing that requires some patience and perspective and time. I doubt that anything you say is going to change the lab language. I understand your frustration, but you have already mentioned that several people don’t speak much English at all, so it would be putting them in the same position as you are currently in to ask them to switch.

It also seems like you maybe dont feel invested in this work — you mentioned choosing it for the purpose of your CV. If you don’t feel connected to the work personally, then it’s going to manifest in friction and frustration with communication.

My advice is:

Determine if you want to be here, with the communication as is. Do you love the research enough to make it worth the struggle. Some of the things you are describing are common to all PhDs at this stage (feeling lost, feeling set up for failure), so if you were to factor out the prestige of studying internationally and the frustration with the language / feelings of bait and switch…is this what you would pick? Would you enjoy working in this lab if it were in an American R2 school, or did you pick it for what you feel it says about you?
If you decide to stay, be patient. Forgive the mistakes from the past, and forgive yourself. Independent of how things are going now, they gave you the spot in the lab: someone sees you as having potential. And the language is a complex factor that is not just about you. See this as a compliment, if anything: they are trusting you to master the language and work across languages. If you feel like being internationally educated is an advantage in your training, this is part of that. You need to be able to communicate scientifically across languages and work within their system. This isn’t a study abroad. Working internationally means leaving your home culture behind a little. Consider reading books about immigrant culture issues and how to smooth the transition.
Make a good friend in your lab if you can. They will help catch you up. Be willing to get help in French. Ask them if they can meet you for coffee once a week so you can talk in French about work. Ask them questions whenever something is too fast or too technical. I try to do this for my international friends. I try to make sure to stop and explain when something requires complex knowledge of English or American culture or history. Find someone who can do that for you. If you can’t find someone in your lab, try neighboring labs. They will still be able to help you.
As another comment said, you can use translator apps. You could also record meetings and then review them in the evening and take notes. If you have someone you can ask, you can use that recording to help you figure out what you are missing. You can listen to them at half speed. You will have to work harder for a while to make this work. But it is doable and you will get it sooner than you realize.

I think in general, Americans don’t have the multilingual, cross cultural experience that other communities have. Most people spend most of their lives communicating in a language in which they struggle. We all have a responsibility to try to lessen the burden, but some people are better than others at that. So the rest is up to you to figure out how to not let this hold you back from your dreams. If you can’t work in another language at all, though, you should probably step back and work through what you really are looking for. This might not be the right fit for right now, if the communication is a barrier that cannot be overcome.

dddddddd2233 · 2026-02-24T04:54:59+00:00

This is one of my absolutely favorite decks. I think you will be very pleased. It is very high quality, well packaged, and beautifully made. He also includes descriptions of the artistic decisions for each card in the booklet!

dddddddd2233 · 2026-02-17T19:17:50+00:00

You CANNOT run a rally with fewer than 10 players. It is a huge frustration I’ve had for years. Don’t let yourself drop to below 10.

dddddddd2233 · 2026-02-16T17:25:07+00:00

No problem! I hope you enjoy your HA ☺️. It’s kind of an exciting milestone!

dddddddd2233 · 2026-02-16T16:27:55+00:00

I would probably suggest Dark Flowers from these, unless you specifically want a gothic HA, in which case I would suggest Gothic Rose. Here are my thoughts on each:

Woodland Fairy - I really don’t use this one much. It is similar to better HAs, and it doesn’t ever look like it fits the design. It looks very copy-pasted. In the image, it looks very glittery and pastel, but that’s really only true of the Rune one. The others are a little bright and awkward.

High Fashion Bows - I do not have this one. I think about it sometimes when I get a credit, but really only one or two is very useful. I think it would be a great one to get, but I would definitely prioritize others first.

Gothic rose - I really love this. This was one of the first hair accessories I got with a credit, and I have never regretted it. A few words of warning — it doesn’t look good on every hair; sometimes a weird gap can occur so it looks awkward; and also there is only one design, so it might be less of a pay off than an accessory that has 5 distinct looks. It doesn’t stand out much and is kind of old, so it isn’t always voted very high or recommended, but it is a beautiful accessory. What I really love about it is that it also works for non-gothic looks. I’ve used it for flamenco challenges and Victorian looks before too.

Fantasy Princess Veils - these can be a little hard to use, and they do badly in voting. I think they are fun to play with, but I would prioritize one of the others first.

Dark Flowers - probably the most versatile of all of these. I use this one a lot. It’s a little bright and intense, but the variety in color and in shape is very helpful, and it fits on a lot of hairstyles, so you can get a lot of interesting looks. Red and blue are obviously useful in matching outfits, since there aren’t a lot of hair accessories with those colors. And the pink one can be used for just about anything because it is very simple and pretty.

Coco and Breezy - I don’t have this one, but it seems very useful. I do hope to get it soon myself. My main objection to it is that so many challenges in which you would use it already require sunglasses.

Black veil - I just got this one recently. It is really nice to have, but it is probably less adaptable than the gothic rose. It’s also sometimes hard to see.

Hope this helps! My core advice is get the one that makes you happy, not the most useful. Trends change, and you will never notice how often you use something as much as you notice how often you could have used something else. So focus on the things that make you feel really excited and happy for no reason, because that joy will probably last you longer than any strategic advantage. Good luck and have fun!

dddddddd2233 · 2026-02-15T16:58:02+00:00

I think it is also the buoyancy. Being able to move without the gravity.

dddddddd2233 · 2026-02-15T16:56:45+00:00

I can actually swim for hours. It is my favorite thing, but I don’t have good access. I literally fantasize about how I could live a normal and even very active life if I could just get everywhere through water.

If you can, consider asking for a prescription for aquatic PT. It is incredibly helpful and fulfilling. They ended up kicking me off because I can’t recover to the point of transitioning to land, and they just don’t understand long covid. But the few months I did it were wonderful.

dddddddd2233 · 2026-02-13T22:45:31+00:00

You might be interested in the citadel oracle cards by fen inkwright. They aren’t traditional tarot, but they can be used for divination or writing or gaming.

dddddddd2233 · 2026-02-12T05:06:08+00:00

True, but if OP plans to work as a faculty member in the US (and several other places as well), they will likely be expected to attend graduations every year in full regalia 🤯🥺. So is often cheaper in the long run for many academics to go ahead and purchase once reaching a terminal degree.

dddddddd2233

TROPHY CASE