(Part 2) Best products from r/ehlersdanlos

Eccentriczebpajamas, congrats!

Fellow hEDS, got married last July (pre-diagnosis), and I think I’ve got some ideas for you:

For the shoes, not sure where to look - I have really HUGE feel (size 12-13 women’s), so I struggled too, but ended up finding a cheap pair that looked great and kinda worked for me. They were tolerable but not comfortable, and I regret not focusing more time on finding a better pair.

For the registry, I’ve had really good luck with the OXO Good Grips series of stuff (their handles are chunky enough that I don’t tend to sublux my fingers, even gripping hard)

The can opener I use is a blue version of this one: (OXO Good Grips Can Opener https://www.amazon.com/dp/B00004OCJW/ref=cm_sw_r_cp_api_5-Z.zbZ5E94HD)

They also have a kitchen starter set that might be good to work with:(OXO Good Grips 15-Piece Everyday Kitchen Tool Set https://www.amazon.com/dp/B000IELD9A/ref=cm_sw_r_cp_api_Ka0.zbT8JYQX5)

When I can cook, I use these gloves instead of potholders - they’re great for the heat, don’t require as much hand strength/fine motor skills as potholders would, and also do a great job at gripping/opening stuck can lids: (Silicone Oven Gloves Extra Thick Heat Resistant Oven Mitts from Aocome, for Cooking Grilling BBQ and Baking, Quilted Cotton Lining, Waterproof Non-Slip Grip Food Grade Safe 1 Pair https://www.amazon.com/dp/B01J76A9AI/ref=cm_sw_r_cp_api_id0.zbEAKKA40)

For sitting, this chair is my favorite. Looks goofy, but hurts WAY less than anything else I’ve tried:
(Gaiam Balance Ball Chair - Classic Yoga Ball Chair with 52cm Stability Ball, Pump & Exercise Guide for Home or Office, Purple https://www.amazon.com/dp/B006FFR37W/ref=cm_sw_r_cp_api_6e0.zb9Y7MDYQ)

A WiFi blood pressure monitor like the one from Nokia (I have the older Withings version) can be great for helping keep track of your overall health (along with things like FitBits, WiFi thermometers, etc., if you’re into that: (Nokia BPM+ – Compact Wireless Blood Pressure Monitor https://www.amazon.com/dp/B071F2MC29/ref=cm_sw_r_cp_api_Qg0.zb3J5YKKN)

Finally, if you have room, a shower stool can be super helpful if you spend too many spoons in one place and struggle to stand up in the shower (there are lots of types, including pretty wooden ones, but this type is really easy to assemble): (Medokare Shower Stool with Padded Seat - Shower Seats for Seniors with Tote Bag, Shower Bench Bath Chair, Handicap Shower Seat for Adults, Shower Stools and Benches https://www.amazon.com/dp/B06XXZQ4XS/ref=cm_sw_r_cp_api_mj0.zb5C9TRYX)

Oh! And bonus last-minute add: overhead lights that you can turn off from your phone, so you can go to bed and THEN turn off the lights, instead of trying to fumble your way across your room in the dark (they can also turn your room into a bright rainbow disco, if you’re into that): (Philips Hue 464479 60W Equivalent White and Color Ambiance A19 Starter Kit, 3rd Generation, Works with Amazon Alexa https://www.amazon.com/dp/B06Y3QXSGX/ref=cm_sw_r_cp_api_0l0.zb2N2PB53)

Good luck, and I hope you have a wonderful wedding day!


...ETA, this set of pots and pans! They have big rubbery handles that are easy to work with, and they’re easy to clean - they can go straight into the dishwasher: (The Pioneer Woman Vintage Speckle 10-Piece Non-Stick Pre-Seasoned Cookware Set (Turquiose) https://www.amazon.com/dp/B014X6NQI4/ref=cm_sw_r_cp_api_ov0.zb32WQSJ3)

Have you ever considered a career in science writing? I know you said you don’t have any legit writing experience, but that is where everyone starts out at first, and you are so young no one would expect you to have published anything. I read a great book by a woman plagued by a mystery illness and she ended up getting into writing about current topics in science and research. She went to a program at UCSC for science writing, but I’m sure online masters also exist.

https://www.amazon.com/dp/1623367654/ref=cm_sw_r_cp_awdb_t1_Ln-yDb9VWKSS1

If it’s something that interests you, I would suggest to write, write, write. You’re already on track by writing your own book! Additionally, I have some writer friends who have gotten experience as newbie writers for places like Groupon. Not a dream come true maybe, but a place to start, and it’s pretty low key activity wise.

I’m sorry you’re going through this, I think it’s something many of us have to come to terms with on some level (former premed here with a degree in MCDB, but not well enough to pursue further education right now). I know that doesn’t take away the scariness and frustration you may be feeling, but just know you’re not alone in this experience. I’ve had to readjust a lot of my expectations and have definitely re-evaluated my priorities since my health has declined. While I once dedicated myself to my studies and future career, I now focus more on my health and maintaining healthy relationships in my life. I’ve realized that happiness for me is being surrounded by a good support network and ones I love, and being able to be there for the people around me. Different for sure, but still valuable.

One more thing, try not to put too much pressure on yourself. You are so young, you may have had things figured out before, but it is so common for people around your age to be struggling with what they want to, or can do. And you have the added pressure of severe health issues to deal with, so it’s no wonder you’re in a tough spot. Be gentle and loving with yourself as you find your place in the world. Our lives don’t always look how we imagined them to be, and that’s ok. We can find new dreams and passions and be fulfilled in ways we couldn’t previously imagine.

Your own graphic makes silicone look like a great choice. Idk where they got their data from but they aren't expensive! I'm not entirely sure what they mean by 'positionable' but they do everything a single use plastic straws do and it seems like a way to just make a reach against any kind of straws tbh. But here's a link to buy some cheap silicone ones that bend and work really well for anyone that wants to :) maybe we just solved this issue for someone. I hope so.

https://www.amazon.com/Yoocaa-Reusable-Silicone-Collapsible-Straws/dp/B07SJZKJZD/ref=sr_1_41?keywords=silicone%2Bstraw&qid=1563810807&s=gateway&sr=8-41&th=1

As for cleaning them, you definitely don't need to do the silly pipe cleaner thing. I don't do that. I rinse them under the sink and/or put them over a pole sticking up in the dish washer (not in the silver ware part, they won't get as clean in there). That cleans them perfectly. So easy! So..... problems solved! And if you don't have access to a dishwasher cleaning a straw would be such a battle I'm going to guess that people have someone in their lives either full time or a lot of the time that helps them with things that could help them with this too. Can we please care about the planet in addition to our disabilities? Because we can :) I'm really passionate about this; being ill has a huge carbon footprint and we can't just not be sick anymore but we can try to figure out ways to lessen that impact in the ways that are possible. This really is. I'm yet to be convinced that there's someone out there that can't use a reusable straw of some kind.

Hey, I have weak hands as well and am in the process of trying to strengthen them since I use them every day at my job. I have some suggestions to help.

1. Exercise the closing your hand motions. I have a hand squeezer thing that is like this https://www.amazon.com/Fitness-Cathe-Starter-Hand-Grip/dp/B001FB614W If you want to save some money you can also fill a balloon with flour (sounds easier than it is) and use that. Start slow with low reps and work your way up.
   
2. Exercise the opening hand muscles. They have these cool tools that help https://www.amazon.com/Dometool-Stretcher-Resistance-Strength-Exercise/dp/B071XVSTZV/ref=sr_1_7?ie=UTF8&qid=1506143530&sr=8-7&keywords=open+hand+exercise But I think using a rubber band does the same thing for less money. Again, start off slowly and work your way up. Make sure to try and do it every day.
   
3. Exercise your writs. You can get a small weight in your hand (or a can of soup for cheapies) and put your arm straight out. Palm facing down, lift your hand up. Do that a few times then turn your hand around so your palm is facing up and lift your hand up again. Try and stretch your wrists a bit after if you can. I find that I can't get a good stretch since I am too hypermobile, but give it your best shot.
   
4. Something that I just recently discovered was PopSockets. They are an attachment that you put on the back of your phone and it accordions out. I just got one this week and I have not dropped my phone since, which is a big improvement. https://www.popsockets.com/
   
   I wish you luck and hope some of these things help.

I have this but I rotate through a few different hammocks.

If you are able to hang it indoors, though, that'd probably be best as the stands are great but don't quite allow the hammock to hang at the best angle. They're slightly off due to the limitations that come from using a stand.

But I can take the stand apart in a few minutes and take it to the beach/park/whatever, too, if I want to kick back outdoors for a bit in an area with no trees to hang a hammock from.

I love it.

Even if you don't sleep in it full time it may help you relax and reduce the pressure points on your spine and other joints that you get from laying on a more solid surface like a bed/couch. I can more easily put my shoulders and hips back in place simply by lying in the hammock for a few minutes if they slide out of place while I'm going about my day.

I’ve benefited from wrist strengthening. Mostly to tolerate general strength exercises, but it also improved random pain from maintaining certain positions.

Here’s what I did, or would do with the benefit of hindsight. Keep in mind if something hurts it’s usually best to avoid the behavior that results in pain, such as setting your phone on something or using prism glasses and laying down.

I’d choose one exercise for wrist flexion, one for wrist extension, and one for wrist pronation/rotation. Here’s my approach. I also did a gripper squeeze exercise, and something like this for finger extension. This video has some good info and alternatives. Eccentric work may promote more adaptation in connective tissue, so using both hands to close the gripper and one to control the opening might allow a higher intensity, but stay focused on avoiding injury.

I’d suggest being cautious with resistance, and aim for 45s of work in each set. You can rest one side while working the other, and take more time to rest if you need it. If you’re failing to reach 45s, or at least 30s, it may be too intense. If you can make it to 60s, perhaps it’s time to make it more difficult. I’d suggest adding a second and third set of each exercise and make sure you’re recovering well before increasing intensity. Don’t add more than one set per session (don’t jump from 1 set to 3 sets). Allow 48hrs between sessions, such as MWF.

Hope that helps, I have more fitness resources here, there are alternative exercises in the grip section.

I just recently on a whim bought this pillow off Amazon and it has seriously reduced my neck pain in the mornings. https://smile.amazon.com/Cubes-2nd-Gen-Geometric-Structure/dp/B07FTJXHP7 Its a bit pricey but definitely worth it for me as I've been on the hunt for a good one for awhile now. Obviously, pillows are something thats really subjective but it does have a reversible hard and soft side. I prefer soft!

I have this weird plastic and rubber thing that you put on the cap and twist to easily open bottles and jars. I found it at my Grandpas house when I moved in and its the best thing ever! But my green tea consumption might be getting out of control now because I can open the bottle so easily...

This is the exact one I have!

Wedge pillows are your friend.

DMI Ortho Bed Wedge Elevated Leg Pillow, Supportive Foam Wedge Pillow for Elevating Legs, Improved Circulation, Reducing Back Pain and More, Blue https://www.amazon.com/dp/B0009STNC4/ref=cm_sw_r_cp_apa_i_DSj1Cb9E267Y6

These also help with lower back pain. I used one when my facet joint and SI flared up together (fun times) and it was immensely helpful.

Also, maybe some mild compression socks would help.

I'm a short girl. After abdominal surgery, I alternated between the hospital one and this one - https://www.amazon.com/gp/product/B01HO5ZBNY/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1. It's not very breathable, but it's very supportive. I had open MALS surgery, so I had difficulty sitting up for a few weeks and this gave me the help I needed. When my ribs are really irritated, it can help with that, too. The one that the hospital gave me was more breathable, but it also came up higher.

I have pretty bad pain at the base of my thumbs--the CMC joint. My hand specialist (orthopedic surgeon) said the pain is from joint laxity. It moves too much. The dr referred me to a physical therapist and I got the Push brace. https://www.amazon.com/Push-MetaGrip-Right-Relief-Osteoarthritis/dp/B00GTXCMCG

I'm still not used to the brace, but it's apparently very well liked by others.

I suggest replacing the Pedialyte with Ultima:

https://www.amazon.com/Ultima-Hydrating-Electrolyte-Powder-Servings/dp/B01IIGUTEY/ref=pd_sbs_121_1?_encoding=UTF8&pd_rd_i=B01IIGUTEY&pd_rd_r=C2NVS5HTZPWHQ6PTSRY8&pd_rd_w=yQWcC&pd_rd_wg=9NSo8&refRID=C2NVS5HTZPWHQ6PTSRY8&th=1

This stuff is great, I use it nearly every day. Whole Foods sells a smaller container if you can't/don't want to buy from Amazon.
Ultima doesn't have artificial colors and flavors like Pedialyte (those actually inhibit electrolyte absorption and aren't good for you in general).

I either sleep on my side with a body pillow between my knees and supporting my up side arm or on my back with a special knee wedge pillow. It’s slanted on the side that goes under your knees then is flat. It keeps me from hyperextending my lower back (or hyper flexing? It keeps my lumbar and sacral spine flat and also keeps my knees from falling open and making my hips want to sublux). The number of pillows under my head varies considerably as to what I’m doing when I fall asleep. I’ll try and find a link to the knee pillow I’m talking about. pillow

https://www.amazon.com/Push-MetaGrip-Right-Relief-Osteoarthritis/dp/B00GTXCMCG

I got professionally fitted by my OT for my right and left, but could only afford 1 at the time. I’d highly recommend you size yourself before buying.

This is the hammock that I'm currently using with the included stand. I'm 6'1, 175lbs

http://www.amazon.com/Vivere-UHSDO9-Double-Hammock-Space-Saving/dp/B004YJCP7O/ref=sr_1_5?ie=UTF8&qid=1408776584&sr=8-5&keywords=hammock

Downside to the hammock is figuring out a bedding situation. I currently use a thin blanket underneath a normal sheet. Then I just use what ever top blanket I need to stay warm if it's chilly.

I sleep on my back, something I can't do in a normal bed! I use a pillow underneath my knees for support.

One good trick to sleeping properly in a hammock is to lay at close to a 30 degree angle, this allows you to become more flat, then you just move around until you find your sweet spot. It can take time to find the correct position, so during this time you are still open to "sleeping wrong" and waking up hurting. This started out as an experiment for me that I was going to do for 30 days, worked so well it's now my preferred way to sleep.

I like to read laying on my belly with the book propped in front of me. I've also been wanting to try these prism glasses for reading while laying down: https://www.amazon.com/gp/aw/d/B016F28L0M/ref=pd_aw_sbs_121_3?ie=UTF8&psc=1&refRID=MT0MZ7AX4KXATJNR51VN

I have one like this. I've seen them at walmart for around 4$. It will open large jars and small water bottle caps. You don't have to grip both handles as you open. I've found out you can just grab one handle and twist if it fits snugly enough to the lid.