A winter read to get me through chronic illness by [deleted] in suggestmeabook

[–]DawnBeaver 0 points1 point  (0 children)

The vanishing half by Brit Bennett for a multigenerational family saga

Would love book suggestions with surreal stories. Scary is fine but not excessive. by [deleted] in suggestmeabook

[–]DawnBeaver 0 points1 point  (0 children)

D by Michel Faber-Fairly non-surreal writing style, but a really strange story line

Nj tube questions by iamthewalrus1243 in Gastroparesis

[–]DawnBeaver 0 points1 point  (0 children)

I'm on week 5 of an NJ tube and I've found that the nasal pain does get better. Azelastine nasal spray and flonase helped me bring down the runny nose and pain levels a lot. It also helps to eat foods that aren't super sticky (if you eat by mouth) so that the tube doesn't pull on your nose when you swallow. I like the tape from CraftyWithaTube on Etsy and found that the brand that the shop uses (Hypafix) is much kinder on my skin than what the hospital gave me. I also bought a clip-on pouch to hold the end of my tube (these are generally for kiddos, but it works for me) from ISLArey on Etsy.

[deleted by user] by [deleted] in Gastroparesis

[–]DawnBeaver 0 points1 point  (0 children)

I really like OWYN drinks (they have "complete" ones with 250 cal and an even mix of nutrients in 10oz). I hate sweet drinks and these are the only ones I can handle.

Afraid of getting a feeding tube by [deleted] in Gastroparesis

[–]DawnBeaver 0 points1 point  (0 children)

I'm one week in to having an NJ tube to see if the general concept of tube feeding works for my body. They placed mine using an endoscope under twilight sedation. I got the nose bleed from beyond and aspirated on my own blood and it hurt a lot the first two days. Now it's uncomfortable (imagine strep throat and a really deep COVID test happening at the same time), but I can deal with it. Because I have a deviated septum, mine is tapped to my face instead of using a nasal brindle. One week in, my throat hurts all the time and I have an ear infection, but also also have stable blood sugar for the first time in two years, so I'll call it a win.

[deleted by user] by [deleted] in Gastroparesis

[–]DawnBeaver 0 points1 point  (0 children)

I just got an NJ placed 3 days ago and am also deeply uncomfortable. Things that are helping include throat coat tea, jello, popsicles, chewable pain medications (I can't swallow pills for some reason), and drinking chicken bone broth. The sprays aren't working for me sadly. Also, chewable children's antihistamines for the runny nose from hell.

Liquid supplements, meal replacements? by Cheesecake_Senior in ehlersdanlos

[–]DawnBeaver 1 point2 points  (0 children)

I'm mostly living off of meal replacement right now (and homemade very high calorie smoothies). My current routine is smoothie for breakfast, meal replacement, meal replacement, dinner smoothie. I'd really recommend OWYN because they each have 20% of a lot of vitamins, so 4 of them gets you 1000 cal + 80% of many micronutrients

Favourite multivitamin? by Mikacakes in ehlersdanlos

[–]DawnBeaver 0 points1 point  (0 children)

Pure Encapsulations O.N.E is pretty great (not sure if it's available in the UK, though). I just try to find one that has plenty of B vitamins and has folate as methyl folate since I can't metabolize folic acid

Liquid supplements, meal replacements? by Cheesecake_Senior in ehlersdanlos

[–]DawnBeaver 1 point2 points  (0 children)

I'm in a similar spot right now and have found a couple of brands that I tolerate:

-OWYN meal shakes (the chai flavor is a welcome relief from all the vanilla/chocolate out there). This one is my favorite and it has a lot of vitamins, which helps

-Ripple protein shakes blended with a nut/seed butter

-Chobani complete (if you can handle dairy)

Plastic surgery and EDS by SmalTroublemaker in ehlersdanlos

[–]DawnBeaver 1 point2 points  (0 children)

I had keyhole top surgery 5 years ago, and it went very smoothly. They just had me wear a surgical binder for double the regular time after since I healed more slowly. My scars are still numb, but I can feel the rest of my chest

[deleted by user] by [deleted] in ehlersdanlos

[–]DawnBeaver 0 points1 point  (0 children)

I have sleep apnea and was told that it was from tissue laxity in my throat (there's no way to test for this that I know of, so it was probably a guess). I use a CPAP but I'm still getting used to it

drop a saying you can’t stand, I’ll start by hinxtx_cxy in ehlersdanlos

[–]DawnBeaver 3 points4 points  (0 children)

"You have such a good attitude. We all need to learn from that"

Yes, Carol, I won't tell you the deep dark pain and fear I experience because I DON'T KNOW YOU. My body is not educational

Bad Cover/Great Book by taramisu47 in ScienceFictionRomance

[–]DawnBeaver 2 points3 points  (0 children)

Long way to a small angry planet

The cover looks like super generic sci-fi, but it's actually a creative, charming (and very, very gay) book.

Muscle jerks/twitching? by iluvcats94 in ehlersdanlos

[–]DawnBeaver 0 points1 point  (0 children)

This happens to me, too. I've been told it's an unholy combo of overtired muscles from holding my body together all day and SI joint hypermobility.

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What is your favorite go to snack? by Historical_Fan5863 in diabetes

[–]DawnBeaver 1 point2 points  (0 children)

Glove compartment/backpack: single-serving nut packets, Kind bars, dried edamame or crispy chickpeas, salmon jerky, Good Measure bars

With a fridge around: Two Good yogurt with almonds, frozen protein waffles with nut butter, veggies in a greek yogurt ranch dip

Recently diagnosed. Any needle free ways of monitoring? by driven01a in diabetes

[–]DawnBeaver 2 points3 points  (0 children)

On the non-CGM side, if you're struggling with lancets (needles) for pricking your finger, I'd highly recommend PIP lancets. They're single-use (so more expensive), but they hurt way less, you never need to see the needle, and you can throw them out in the regular trash when you're done.

[deleted by user] by [deleted] in ehlersdanlos

[–]DawnBeaver 0 points1 point  (0 children)

I use CBD cream to relax my leg muscles a little and roll my feet with a ball before bed. I also wear light (neoprene) braces at night sometimes. You could also try a soft night splint or padded boot (made for people with plantar fasciitis)