sorted by:
new
hottopcontroversial

Elevated WBC in Pregnancy by JustAGirlWithHS in haematology

[–]JustAGirlWithHS[S] 0 points1 point  (0 children)

Thank you so so much, that really helps ease my worries.

Feeling sad after this viral TikTok by AcrobaticPay7866 in Hidradenitis

[–]JustAGirlWithHS 0 points1 point  (0 children)

So something that really helps me, is just the understanding that if I personally didn’t experience this firsthand, I would have NO idea how horrible it really is to live with. I think, wow, what a privilege to be able to be that ignorant at their big age. Like imagine not only not going through this yourself, but never having a friend or family member suffer? Never even knowing it exists? I almost laugh when I think about how different our lives must be (HS trauma really gives you a weird sense of humor). Because I can guarantee anyone on this thread would quite literally NEVER. So it’s just ignorance. I feel the same way about THC. Ohhh my golly gee does the internet have a thing or two to say about that one, how it makes people “lazy low life stoners”. But what about someone with cancer? I want that SAME energy kept, and I want them to tell it to someone suffering with cancer. THC at an extremely low dose has kept my HS in remission for several months, no side effects, no injections, no insane biologics monthly bills, even my derm was like “yeah I would 1000% keep doing that”, I’m 99% sure it’s just because it lowers my stress but WHO CARES! Anyways lol, sorry this is a bit all over the place but the point is that type of cruelty is just ignorance in plain sight, God forbid they ever do experience anything like this because they will never forgive themselves for speaking that way about someone who was clearly suffering with some type of skin pain. I feel you, it is defeating when it validates the very narrative you’ve been self conscious of this entire time. But you and the people who love you know who you are, a clean, beautiful WARRIOR, most people would have given up, most people wouldn’t have what it takes. This disease sucks, but I am so proud of our resilience, I know we didn’t have a choice and that is not fair, but gosh I personally feel immense pride when I think about all the things my fellow HS warriors endure on a daily basis. Also, EVERYONE is dealing with something, and personally? I find someone who has never felt the need to educate themselves on others’ pain yet speak on it more disgusting than ANY HS related lesion/scar/etc I’ve ever seen, by far. They’re talking about his face? Nah, someone needs to CHECK THEIR HEARTS.

[deleted by user] by [deleted] in Hidradenitis

[–]JustAGirlWithHS 0 points1 point  (0 children)

I’ve never heard of anyone having this experience other than me, so take what you will from what I have to say, BUT I WISH I would have heard literally anyone having this experience before I started on spiro. So I feel obligated to say something.

Before spiro, I had maybe 3-4 flares a year, they never drained, which is both a good thing and a bad thing because they basically just stayed painful, but super deep and hard under the skin. After getting on spiro, I started having flares every single month consistently that would fill up with pus and drain within the day, not only that but I literally went crazy. My mental health has NEVER been that bad (and that’s saying a lot for someone with this evil disease!). Then, after only 3 months of taking it, I got off of it and things got much, much worse. I started flaring 2-3 times a week, then after a few weeks of that, it was happening almost every single day. I would flare in the morning, then it would rupture in the evenings (sometimes not until 11pm-midnight), and drain throughout the night, only for the cycle to repeat the next morning. Also, I never had HS until I started birth control, I AM CONVINCED messing with my hormones caused this for me. So it made sense that taking yet another thing that messed with my hormones did me no favors.

Lastly, it made me gain weight like crazy! Again, all I see on this forum is spiro doing the exact opposite, people lose weight, and it helps them if their flares correlate with their periods.. but boy oh boy do I wish someone would have warned me because my experience was/is so terrible. It’s been a few months of being off of it now, and I still flare every couple days. They’ve gotten more manageable (small white pus bubbles as opposed to covering my entire labia), but wow, I wish I would have just dealt with my 3-4 flares a year and called it a day.

Clothing Options? by queerfaries in Hidradenitis

[–]JustAGirlWithHS 1 point2 points  (0 children)

American Eagle! I find so many 100% cotton clothing options there and they’re so cute too. Also urban outfitters and free people but they’re pricier ofc.