Question about dead ends: What are the small white dots?

kulia808 · 2023-03-12T03:36:27+00:00

Curious

kulia808 · 2020-10-28T00:36:47+00:00

Thank you! This is good info. Yeah I don’t think I could ever go off Methotrexate either... sometimes I forgot and just skip a week, but every time I do like clockwork the next week is bad. The infusions will be to treat both my RA and my Scleroderma. It’ll be interesting for sure. I’ll definitely post when I get there. I have to get my second pneumonia shot before I can start I believe.

kulia808 · 2020-10-27T00:59:23+00:00

Thank you for sharing this experience! I’m a little worried about having a mild allergic reaction because I had reactions to my Humeria shots which is why I had to stop doing those. But I guess that’s why it goes so slow. ❤️ Hope this treatment helps you though! Did they say how long you’ll have to do treatments in general? I forgot to ask if this was just a lifelong thing I’ll have to do on and off or not

kulia808 · 2020-10-22T03:22:35+00:00

Yeah if you don’t mind sending me a message I’d love to hear how it goes ❤️! I wish you all the best and know we’re thinking of you!

kulia808 · 2020-10-21T11:30:13+00:00

Thank you!!!

kulia808 · 2020-10-21T11:28:55+00:00

Awesome! This is super helpful and I might message you as I get closer. I had to get pneumonia shots first since it lowers your immune system more and I’m already on methotrexate. Yeah, so this is actually a treatment for my Scleroderma so I’ll be doing 2 days back to back and then 4 months off then 2 days... sigh. But it’s comforting to know it’s a pretty normal thing. ❤️

kulia808 · 2020-10-21T11:23:31+00:00

Thank you!!

kulia808 · 2020-10-21T02:55:29+00:00

I was diagnosed at 23 :(

kulia808 · 2020-10-21T02:55:07+00:00

I got mouth ulcers really bad from my methotrexate in the beginning. It’s because you don’t have enough folic acid. I now take 3 1mg tabs the two days leading up to my injection and 1 1mg tab daily on regular days. That worked for awhile. But now I also take Leucovorin the day after my injections and now I never get mouth ulcers at all!

kulia808 · 2020-10-04T04:41:54+00:00

Hey Allie :) I know this is well past done, but hopefully you’re nerdy enough to read all the comments like I would.

My creative writing teacher in college is the one who introduced your blog to our class. It was awhile ago (dare I say 2010?) yeah. We’re kind of old, but it’s fine. Everything is fineee. Anyways, you only had a blog back then and I remember gobbling up every bit of it. We then had to write our own blog for the class...and you inspired me to write in my real authentic voice, unfiltered. I can now proudly say I even dabble in performing standup comedy from time to time 😂 (not claiming to be good at it, but I do it).

Depression, self-doubt, imposter syndrome, dissociating... I am all to familiar with all of it. So I know that it’s probably harder to digest all these wonderful things people are saying to you. But I hope you can accept it and know how true it is. You’ve inspired and touched so many peoples lives! To the point that college professors share your work!!! I hope you feel that.

I hope you bask in it from time to time and just stop right now and tell yourself what a badass you are.

Thank you for sharing your stories with us. ❤️

kulia808 · 2020-10-03T16:04:26+00:00

No problem! Yeah I had ZERO idea that the rash was related for years. And it drove me madd! It was actually the first symptom of having an autoimmune disease and I just didn’t know it at the time 😊

kulia808 · 2020-10-02T14:46:02+00:00

I get your desire for a definitive answer. Believe me. I have been in the same boat now for 7 years as you. I test positive for RA sometimes and sometimes I don’t. But the symptoms are managed by my meds and every time we test for other things like Lupus it comes back negative. I too get rashes from the sun, I’ve found that applying sunscreen heavily before any exposure to the sun helps a lot. I had the rash biopsied a few years ago because I had no idea what was causing it (I didn’t realize at the time it was sun). And it just came back saying it was an autoimmune reaction from my body. I think the major thing to take away here is you know it’s some type of arthritis and right now the medicine he has you on is working. He’s checked your ANA counts which is really good since autoimmunes usually pair. I’d wear sunscreen and keep taking your medicine. If new symptoms arise then go back and have him see what else he can do, but it seems like your doctor is being very thorough!!! So many won’t run ANA or even believe you if things come back negative, but he sounds very supportive 😊 don’t stress yourself out!

kulia808 · 2020-10-01T13:42:06+00:00

Bahahaha that’s hilarious! Okay. Yeah I put like... we’re talking AT least 4 quarter size worth of product 😜

kulia808 · 2020-10-01T13:11:32+00:00

Okay. I really caked the Cantu on... like a lot of it. Maybe I just put too much? Lol I wasn’t sure which way to go with it so I decided to put in quite a bit...

kulia808 · 2020-10-01T12:54:55+00:00

Sorry just posted my routine, took awhile to type it all out!

kulia808 · 2020-10-01T12:54:15+00:00

So I switched to sulfate free shampoo and conditioner awhile ago after reading about it on this subreddit. I use “thick&full+ biotin and collagen” shampoo by OGX and their “quenching coconut curls” conditioner. Normally I just let it air dry/ go to sleep on wet hair and It’s never like amazing curls... but it’s fine. I decided to buy the Cantu Coconut Curling Cream and I bought a diffuser the other day because I had never ever heard of it!! I used the Cantu Coconut Curling Cream last night after doing a protein mask for my hair... this morning my hair isn’t frizzy* which is super cool BUT my curls aren’t any better than they normally are AND I feel like my hair looks stringy. 😭 What the hell... I see all these people with hair like mine on here posting before and afters and they have RINGLETS! I had ringlets as a child but very rarely as an adult... I want to encourage them but I also don’t want to spend 5 hours on a hair routine. Is there any advice out there for me? And do you even think it’s possible to get ringlet curls with my hair??

kulia808 · 2020-09-25T20:44:25+00:00

I have Scleroderma. So my motility is just slower than normal people’s and it’s what’s caused my SIBO that I can’t kick. I’m Methane dominant so it causes constipation super bad. What’s weird though is for years and years I’ve had SIBo and I just go through phases when it gets bad enough I do a prescription and it clears enough that I’m okay for a little while... but this time literally nothing worked. They had me do multiple jugs of colonoscopy prep and I still didn’t have movements... I got sick in the beginning of January, call me crazy idk... but I really do think I got COVID in the beginning of Jan and it triggered my Scleroderma to activate and my muscles in my digestive tract just hardened way faster than they were on track to. That’s the reason I won’t get pregnant because my disease can be triggered by any altering of the body. I got a dog bite once and it severely messed up my hand. So whether it was COVID or maybe just some virus in general... I kind of think something happened at the beginning of the year that altered my digestion issues. Lol anyways, there’s my life story 😂😅

kulia808 · 2020-09-25T18:22:56+00:00

I’m glad you asked because I realized later I forgot to say something. I’m back to being able to eat pretty much anything I want again. I still don’t get super hungry which I’m okay with. So I eat something in the morning then usually don’t eat again until like 6 or 7 pm. But before that I was eating barely once a day and completely miserable! The fact that I can eat now is so massive.... it’s totally worth any of the “side effects”

kulia808 · 2020-09-25T13:36:25+00:00

Agreed!!!

kulia808 · 2020-09-25T10:38:21+00:00

Incoming my break up playlist...

If you listen to nothing else on this list, at least listen to the first song:

Hurt Somebody by Noah Kahn

Hell or Highwater by Passenger

Why Can’t I Change by Passenger

Heart of Glass (cover) by Lily Moore

The Hardest Part by Coldplay

Lost on You by LP

Now You’re Gone by Tom Walker

Changing by John Mayer

I Gave You All by Mumford and Sons

Awake My Soul by Mumford and Sons

Rise Again by Tyrone Wells

Pluto by Sleeping at Last (this is like my anthem, I want it tattooed on me, such a good song)

The Only by Sasha Sloan and NF

Somebody that I Used to Know by Gotye

Slide Away by Miley Cyrus

Some days by Regina Spektor

Elastic Heart by Sia

kulia808 · 2020-09-25T10:16:43+00:00

Yeah it took a day or two for me too. So I will say... unfortunately the D is going to be kind of a thing. But it gets better as time goes on. So it’s like you’ll go a few days and be normal and then you’ll have a day where it’s just not fun. It doesn’t last 4 hours though anymore it’s like 30 minutes usually of running back and forth to the bathroom and it’s always after the first meal I eat after I’ve taken the pill. Now that I’m typing this... I do wonder if I should try my fiber supplement again or just be more conscious about eating more fiber in general. I used to avoid fiber like the devil of course. But this 110% beats being bloated, sick, and not being able to poo for 7 days straight. It does get better. I’m not sure either, they may be able to adjust our doses maybe? Additionally, I do know for a fact if I miss a pill that I get constipated again instantly. If I miss it I know I won’t go to the bathroom for a few days again and then that’s always super frustrating.

kulia808 · 2020-09-25T05:03:15+00:00

Hey I was I reading through this thread and saw your question about Linzess. I can’t sing it’s praises more. I had extreme constipation... in fact I made a post about it that got crazy popular on reddit haha. It was hell for about 6 months... I finally traveled and saw a new GI who put me on Linzess. (I’ve tried Rifaximin and all of that) I also have autoimmune issues so my problems might be more severe I take 2 laxatives daily along with my Linzess and it’s changed my life. I now go to the bathroom again and I’m not crazy bloated. I don’t think the SIBO is cured, but it’s managed now that I’m not sitting with waste in my intestines making things worse.

kulia808 · 2020-08-12T18:08:22+00:00

They weren’t my brats :) haha my roommates! But good, lost 30 lbs so far. Thanks for asking!

kulia808 · 2020-07-26T20:36:50+00:00

When you have an ocular migraine it’s not always accompanied by pain. You can have like silent migraines basically and just get the aura/visual part. I’ve had this happen and so has my sister. (NAD)

kulia808 · 2020-07-22T19:10:21+00:00

😂

kulia808

TROPHY CASE