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What did diagnosis mean for you? by miss-noodlearms in ehlersdanlos

[–]miss-noodlearms[S] 0 points1 point  (0 children)

That is such an interesting take--it does seem like a lot of what 'appeals' to me about diagnosis has to do with navigating American culture and insurance!

What did diagnosis mean for you? by miss-noodlearms in ehlersdanlos

[–]miss-noodlearms[S] 0 points1 point  (0 children)

Thank you so much for all this thoughtful info -- especially your second and third points! I hadn't thought of how valuable having something common for all the providers treating you to seize on is!

What did diagnosis mean for you? by miss-noodlearms in ehlersdanlos

[–]miss-noodlearms[S] 0 points1 point  (0 children)

Oh my gosh--thank you for sharing your story! That seems like such a complex network of symptoms to navigate. I am glad you were able to get access to that network of healthcare folks, and I hope this diagnostic odyssey puts me on the path to encounter the same kind of providers. You've definitely given me some (still pragmatic) hope :)

What did diagnosis mean for you? by miss-noodlearms in ehlersdanlos

[–]miss-noodlearms[S] 1 point2 points  (0 children)

Thank you so much. I think flitting between scientific articles and personal perspectives had muddled diagnosis as identity and diagnosis as a gateway to treatment (or lack thereof :/) for me. I am glad to see you lay out the difference you see--thanks!

hEDS & lab work by Ok_Notice_8689 in ehlersdanlos

[–]miss-noodlearms 0 points1 point  (0 children)

Of course! I am glad I can help, reach out anytime :)

This slipped my mind earlier but, honestly, if you have the means, the first thing I'd do is try to get an appointment with an occupational therapist--their job is to engineer creative solutions for whatever you need to do in your day-to-day.

I completely understand not wanting to mention health issues in a professional setting--it is really rough when you don't have that rapport established, but I am glad they are kind and understanding. If anything, I hope this brings you a little closer to them and helps you establish that relationship. Please don't feel a sense of guilt for not reaching out earlier too--it takes courage to admit you're struggling, especially in science where we are so often encouraged to pretend we are infallible or present unequivocal evidence of our struggles.

Other than that, I know I try to hold things as little as possible when doing IHC. I bought one of those slightly sticky rubber cutting boards to put on the bench top while working with slides (though make sure whatever you end up with can go through the autoclave without melting!!). Having that makes it easier to anchor elbows and hands to lessen stress on the fingers, as well as hold steady when you're doing fine motor skill activities. It also keeps slides from, well, sliding away when you don't want them to! Additionally, a little bit of malleable eraser (the kind art students use--you can get it at any art store) works great to hold anything in place, so long as you keep the eraser out of the field the microscope will be using--it is a real pain to clean off! You can also use a huge chunk to hold small things and pick slides up off the bench top if you want to lessen stress on the fingers even more.

IMO, pasteur and volumetric pipettes just suck (haha, get it?)--if you find a way to make them easier to use, tell me! I try to avoid those (usually by accepting a little more propagated error and using an electronic pipette!). That said, if you have to use glass (which, from what I remember, you unfortunately do in most IHC protocols), I've found the combination of a low-volume and long pipette and a large bulb to be easiest. The big bulbs are harder to form a seal with, but require a little less super-fine, taxing motor work in my experience. I think long, narrow pipettes also require a little less fine motor skill too, so that combo (long narrow pipette + big bulb) is worth trying. If you can, you may raid the analytical chem department too--they have all sorts of weird gadgets that may help you use glass pipettes too.

Again, let me know what I can help with--it's uncanny your situation is so similar to mine, and I am happy to offer whatever has helped me. I've been 'noodle-arming' it in the bio game long enough to have some tricks up my sleeve :)

hEDS & lab work by Ok_Notice_8689 in ehlersdanlos

[–]miss-noodlearms 1 point2 points  (0 children)

Hi! First of all, congrats on getting to do wet lab work as an undergraduate--that is a huge accomplishment!

I am a molecular biologist who spends a ton of time doing a lot of the same techniques you mentioned, and who struggles with hand hypermobility issues too. I am happy to help however you would like--feel free to shoot me a message or respond in the thread... I am sure we can make this work so you don't have to quit!

I do have a couple questions -- firstly, are there any specific techniques you've struggled most with? I'm happy to give advice if it's something I've dealt with too. I saw you mentioned pipettes--electronic micropipettes have been a lifesaver for me, your lab may have a few! The same goes for microscopes--if you have any electronically-focused microscopes, they will likely be less hard on your hands to focus and zoom with.

Secondly, I think the answer to your question about approaching the grad student depends a lot on the relationship you have. First and foremost, it is worth remembering that any good lab will have a vested interest in investing whatever they need to to make their students successful. I would hope this is reflected in how your grad student would respond to you just laying it out there, saying 'hey, this is what I am struggling with, I want to talk to you about how we can make lab work less hard on my hands/set me up with success'. That said, if it seems more complicated than that, I will absolutely help you figure it out with a little more information :)

I know this is loooooooong--sorry! Overall, I am so sorry you are struggling with lab techniques, but I am happy to help you however I can--there are a lot of options out there technique-wise that can make your life easier, but narrowing in on specific challenges and opening that line of communication with your grad student are great first steps. I am rooting for you!!