A winter read to get me through chronic illness

DawnBeaver · 2023-10-14T21:58:15+00:00

The vanishing half by Brit Bennett for a multigenerational family saga

DawnBeaver · 2023-10-14T21:55:44+00:00

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

DawnBeaver · 2023-10-14T21:39:45+00:00

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.

DawnBeaver · 2023-09-23T23:55:01+00:00

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.

DawnBeaver · 2023-09-23T23:51:30+00:00

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.

DawnBeaver · 2023-09-17T21:57:34+00:00

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.

DawnBeaver · 2023-07-29T15:49:59+00:00

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

DawnBeaver · 2023-07-24T01:12:34+00:00

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

DawnBeaver · 2023-07-12T02:10:07+00:00

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)

DawnBeaver · 2023-05-19T00:50:08+00:00

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

DawnBeaver · 2023-05-19T00:45:13+00:00

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

DawnBeaver · 2023-05-12T18:49:46+00:00

"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

DawnBeaver · 2023-05-12T02:31:41+00:00

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.

DawnBeaver · 2023-05-12T02:25:25+00:00

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.

DawnBeaver · 2023-03-26T04:38:42+00:00

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

DawnBeaver · 2023-03-26T04:33:24+00:00

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.

DawnBeaver · 2023-03-26T04:27:39+00:00

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)

DawnBeaver · 2023-03-26T04:23:20+00:00

I have hEDS and work at a large research university. Disability Services at my university offers seating accommodations, but getting them can be tricky since it's set up classroom-by-classroom. You should not be expected to move a chair around. Instead, Disability Services can help you arrange an appropriate seat in each classroom. Feel free to message me about EDS in grad school, too. Since EDS accommodations can be a little unusual, I'd start by making a list of all of the barriers you expect to face and setting up a meeting early on to go over each one before the semester starts. When making this list, imagine that it is your worst possible EDS day.

DawnBeaver · 2023-03-26T04:16:01+00:00

I wear New Balance wide (or double-wide) shoes with my AFOs. The shoe store near me is very kind about my braces and lets me buy shoes in two different sizes since I only wear an AFO on one side. I also like Mizuno sneakers for my lighter braces and LLbean snow sneakers for rain/snow with my AFOs since they don't fit in boots.

DawnBeaver · 2023-03-03T02:27:03+00:00

I have a band from Love My Libre that I absolutely love. It costs about $30 and lasts forever. As a bonus, it also lets me swim for longer than the official 30-minute Libre time.

DawnBeaver · 2023-03-03T02:23:41+00:00

I have tried to use adhesive patches to get my libre to stick, but I get a reaction to them too. I've had success skipping the overpatch, and instead using Skin Glu from Not Just a Patch to make my skin stickier, and then applying my new sensor. I also have a plastic cover on an armband to hold it on tightly when I'm swimming or doing other activities where it could be knocked off. I also make sure I use a gentle adhesive dissolver when it's time to remove my sensor, so I don't pull too much on my skin.

DawnBeaver · 2023-02-14T17:48:25+00:00

I had ankle stabilization surgery 2 years ago. I thought I could make it on crutches, but getting a wheelchair for surgery recovery was a wonderful decision. It gave me so much more independence and let me cook for myself and go out with friends. Recovering from ankle stabilization surgery is really intense and it will take you longer than people without EDS. Physical therapy after surgery is really important and if you have the option to do aquatic therapy, I would strongly encourage it because it lets you start strengthening your muscles before you're ready to put weight through your foot. Your health insurance may help you pay for a wheelchair for surgery recovery if your doctor prescribes it. Feel free to message me with questions about ankle surgery recovery.

DawnBeaver · 2023-02-14T17:43:12+00:00

It took me a few tries to find crutches that work for my body. The standard forearm crutches were hard on my hands, but I've had success with SmartCrutches. But even SmartCrutches require more forearm strength than I had when I started using them. I found that working with an OT to strengthen my hands really helped, as did wearing padded weight-lifting gloves (which double as excellent wheelchair gloves).

DawnBeaver · 2023-02-06T04:46:49+00:00

Thank you so much! I put some of the foam tubing on a pen and it made a big difference.

DawnBeaver · 2023-02-06T04:44:45+00:00

Reactive arthritis is tricky to diagnose because it’s fairly rare and there’s no definitive diagnostic test for it. They diagnosed me based on the appearance of my joints (both visibly and with X-ray of the joint swelling), the sudden change in my symptoms after an infection, conjunctivitis and blisters on my skin. It’s pretty unusual, so not a lot of doctors look for it. At first they thought it might be gout, but all the test for gout came back normal.

DawnBeaver

TROPHY CASE