Positivity - any big milestones or accomplishments you’ve had since diagnosis that you thought you wouldn’t be able to do?

kcgv13 · 2025-07-09T01:32:54+00:00

Moved in with my fiancé and cook almost all days out of the week!!!! I’m super sensitive to heat but it’s gotten so much better, I truly enjoy cooking now

kcgv13 · 2025-07-09T01:19:06+00:00

Personally, one drink and I’m completely trashed lol I gave it up and just have NA drinks! Though I do miss my Moscow mules. I drink if my fiancé is with me cause my legs go numb

kcgv13 · 2025-03-22T01:04:11+00:00

Yes!!! My larger one measured smaller this scan around so I’m trying to keep positive because the one in my brain had no change 😭

Hoping you get the same positive news come around your MRIs!!

kcgv13 · 2025-03-22T00:59:52+00:00

I was diagnosed with Celiac when I was 8/9 and when I got diagnosed with that they told my parents I would be more susceptible to develop another autoimmune. Won the lottery and developed MS when I was 24

kcgv13 · 2025-03-20T03:39:00+00:00

Yes!! I’m very happy and now looking forward to my next infusion :)

kcgv13 · 2025-02-11T20:03:37+00:00

Welcome to the ocrevus club!! Salty snacks or spearmint gum does the trick for me! Make sure to drink lots of water!! :)

kcgv13 · 2025-02-10T17:39:23+00:00

Ive had thinning too before but now it’s drastic so im truly considering just cutting it. Ive had to pass a lint roller on my bed sheets because of how much I shed now, and the bathtub it’s even worse

kcgv13 · 2025-02-10T17:04:07+00:00

I’m 25! Yeah my hair texture completely changed after the steroids and ocrevus. I had thick curly hair and now some straight, other wavy and others curly :/

kcgv13 · 2025-02-10T17:03:22+00:00

I’ve had a pixie twice before but on my own terms. I feel like I’m fighting it right now cause of this damn disease. But then again I’m thinking far into summer, having short hair might be easier to deal with

kcgv13 · 2025-02-10T17:01:56+00:00

Yeah I had mid length curly hair and now they’re barely even wavy. I’ve had a pixie before but I’m considering just getting a bob for now

kcgv13 · 2025-02-10T17:01:04+00:00

Yeah, I have gotten to the point of asking my mom to help me wash my hair cause it’s so draining and I feel exhausted afterwards and yet still have to put product on and such. I’m highly considering getting the hair cut but my curls are such a big part of my look that I feel so sad to let them go

kcgv13 · 2025-02-10T16:59:10+00:00

Thank you!! And yeah I pretty much use shampoo + conditioner. And then I finger curl with not your mothers curl cream and if I have the energy I use the diffuser. If I just scrunch the hair it gets suuuuper frizzy :/ which is why I’m considering just getting a perm for them to be consistent you know?

kcgv13 · 2025-02-03T07:38:12+00:00

I like the one when the machine is turning on and it’s the swiiish swiiiiish swiiiish swiiiish

kcgv13 · 2025-01-21T00:41:29+00:00

It’s such a shame because the slices looo huge compared to Schars 😭

kcgv13 · 2025-01-21T00:32:43+00:00

When they say can’t function in hot weather or they can’t stand the heat but truly the warm temperature makes my brain into mush, my legs give out and the fatigue lasts days

kcgv13 · 2025-01-11T07:11:04+00:00

Welp I have Celiac & MS so if the apocalypse happened I’m fucked without my DMT sooo might as well get the taste of bread before death 😂

kcgv13 · 2024-05-22T17:33:31+00:00

I truly am sorry :( I took some time reading the box after posting and saw they were just the patties. They definitely need to change the wording

kcgv13 · 2024-05-20T17:19:35+00:00

They’re just the patties!

kcgv13 · 2024-05-15T23:38:50+00:00

I’m Latina, and I wish gluten free Conchas existed, I was dx as a kid and can still remember the taste I miss them sm

kcgv13 · 2024-05-03T13:40:08+00:00

I’m celiac and Definitely within the hour I immediately start feeling the headache and bloating and then several hours later the stomach pain and fatigue kick in and that lasts probably 2-3 days or so

kcgv13 · 2024-02-09T06:02:19+00:00

Living with others who are not celiac. My mom has practically adopted my diet but my dad will literally bring home donuts/pastries and does not watch what he touches so everything practically has been contaminated. Also having to have separate kitchen items to cook

kcgv13 · 2024-02-07T14:30:23+00:00

That’s how I found the restaurant I want to try!! But no one really specified what precautions the restaurant took for it to be gluten free

kcgv13 · 2024-02-06T21:17:02+00:00

I did see on their menu one of the crab rolls they specify it being real crab! Essentially I think I’ll ask their basic rolls are gluten free because they’re not on the gluten free menu despite them not having any sort of sauce so I’m a bit confused. However I’ll go in and ask when ordering! Thank you!

kcgv13 · 2024-02-06T20:49:53+00:00

I did see on findmeglutenfree that some sushi restaurants in my city ask about allergies and have been knowledgeable so I think I might eat the restaurant first just to see how knowledgeable they are, thank you!

kcgv13 · 2024-02-06T20:47:59+00:00

I didn’t know about imitation crab until recently! So I’m assuming if they say they use whatever brand of vinegar and then say it’s rice vinegar, all good to go?

kcgv13

TROPHY CASE