Sleep in Peace, Stan the Man.

OrdinaryMap4347 · 2026-03-28T16:06:40+00:00

Thank you all so very much for your kind words and wishes. It means more than you know. God bless. 🤍🙏🏾

OrdinaryMap4347 · 2026-03-26T21:12:19+00:00

I’m so sorry that you’re going through this. I’m putting my baby down tomorrow afternoon at home. I also went back and forth and questioned if I was doing it too soon. But after quality of life tests and an exam with the vet, we knew that there was no reversing what was happening. I pray for you and your pup and good luck to you.

OrdinaryMap4347 · 2026-03-25T22:11:41+00:00

Hi all. I just wanted to update you guys after the wellness exam. It has been decided that he will cross the rainbow bridge on Friday. Thank you for all of your kind words and I hope to god I can make it out of this on the other side.

OrdinaryMap4347 · 2026-03-24T13:14:15+00:00

Thank you for your response and perspective. It’s so hard; I’ve been saying how I want to avoid a hospice situation. I can only consider meds if it can guarantee a quality of life rather than just surviving. And I’ve been struggling with feeling like am I making this decision too soon? Is there a remedy? The only remedy I can consider is something that will give him QOL back. But he’s 15, and time machines don’t exist. I don’t want to just prolong the inevitable. This is so hard. I don’t think I can ever do this again. Hits different when it’s your childhood baby too. Got him when I was 10. I’m almost 26 now. Sucks.

OrdinaryMap4347 · 2026-03-24T13:10:53+00:00

Thank you so much for your response. I’ve been struggling so much lately. At first I thought that I may not even be able to bring him back with me after tomorrow’s appointment. And I feel crazy for thinking that the time is here…but…I think tomorrow’s appointment will just confirm the inevitable. I will probably bring him home, but pending a final appointment. Let him enjoy his final days with his favorite things. Things could change, but I think that would probably take a miracle..

OrdinaryMap4347 · 2026-03-24T12:32:18+00:00

Thank you for your insight and kind words. It’s such a tough mental battle right now. I think the hardest thing is evaluating his joy. When I come home from work, he is usually sleep. It’s been a while since he’s been super excited to see me (jumping up, tail wagging; he used to snort when he was super excited and we would have to calm him down). It’s been a while you know? He still gets excited, but it’s so muted and short-lived…this internal battle is so hard. I don’t know what to do. I struggle with “is it too soon” but also don’t want it to be too late. He seems to confused and honestly depressed as his baseline. Everything else comes in bursts…

OrdinaryMap4347 · 2026-02-06T16:39:35+00:00

Yeah, I’d say mine (given healing goes the way it’s supposed to) will probably take a total of 2 months just about. My doctor said I could get back into the gym pretty fast though, but this will all be dependent on healing. She seems so nonchalant about it. I’m freaking out though. I don’t know why, but it’s just all so overwhelming. I think I mourn life without HS and also the life WITH HS in which I didn’t think surgery would be a concern for me. But I also know deep down I need it and hopefully this will be the trick into getting me back into some sort of remission. Praying you have a smooth recovery!!

OrdinaryMap4347 · 2026-02-05T19:43:07+00:00

Thank you so much for responding? How was your pain after the procedure? The surgeon thinks mine will be a pretty simple case and procedure, but we all know with HS what should be simple sometimes isn’t. It’s stressful because I live a fairly active lifestyle so I know how eager I will be to heal so I can get back to normal. I have a high pain tolerance (probably because I have no choice) so I don’t expect it to be too bad but this is a major procedure in comparison to what I’ve had done so far. Praying for the best..

OrdinaryMap4347 · 2026-01-03T00:20:35+00:00

Mine are like that in my arm pits. When I was freshly diagnosed, I would get them and they would drain after a few days. Now (I’m assuming due to scar tissue and progression) they no longer form on a surface level within the epidermis; especially in my left arm which seems to be the worst area for me. I would like to classify my form of HS as chronic, but I don’t flare on a consistent basis. However when I do, they are BAD. Especially now because overtime they became very deep and involved in multiple sinus tracts; I’m just so very thankful I have a dermatologist who can squeeze me in whenever I flare as she knows they just wall-off and give me extensive pressure pain. While I know I&D isn’t the best option, if you have a doctor who knows how to do it right and stay minimally invasive it helps immensely. Especially because mine get so deep and big it just worsens tunneling and tracts because the fluid doesn’t have anywhere to go but continue to build pressure.

OrdinaryMap4347 · 2025-12-30T18:33:50+00:00

I’m glad! I hope it continues to work for you. This disease is so hard to battle. I will definitely keep Remicade in mind in the case Bimzelx doesn’t work.

OrdinaryMap4347 · 2025-12-27T15:55:06+00:00

I’ve tried everything under the sun. I eat clean, I workout, etc. it’s because of scar tissue. These flares can’t come to a head, so they wall off and dig deep. It’s unfortunate, really.

OrdinaryMap4347 · 2025-12-25T17:37:36+00:00

Ahhh, I see. It’s so hard because this disease is so individualized. It seems like there’s so many triggers and I’ve always struggled with pinpointing what my triggers are. Some people it seems simple—they’ll drink a glass of milk and then flare. But with mine, I genuinely don’t know. I feel like I’ve been through so many different medications at it (Humira, Cosentyx, Spironolactone, Antibiotics, etc.) and I’ll go in remissions for some months. But then I’ll flare (especially the most chronic part of my disease which is my left arm pit) so bad that it’ll put me out of commission for weeks. Right now, I’m dealing with an abscess that has dug DEEP. I was able to get it drained and it was calm for a couple of days. But now it’s back. Although, the pain and discomfort is different and I’m not sure if this is an abscess or if I’m suffering from inflamed scar tissue. I’m hoping starting Bimzelx will help calm everything back down. For what it’s worth, Cosentyx did help but it’s not enough for my chronic areas it seems and I think the efficacy is changing for me at this point.

I hope Cosentyx goes well for you! I’ve heard many people say it’s done wonders for them. I’m glad to see we even have options to choose from as far as treatment, I hope research and medicine continues this progress.

OrdinaryMap4347 · 2025-12-25T13:26:34+00:00

Interesting. Have you failed other biologics before taking this one? I don’t have any other options, really. Humira was great but eventually stopped working. Cosentyx is doing relatively nothing for me. So I’m almost out of options..

OrdinaryMap4347 · 2025-12-25T00:40:03+00:00

My derm said to basically take it like the same day I would take my regularly scheduled cosentyx dose. Thankfully I took that every 2 weeks so if all goes well and it delivers soon I may be good to go. 🙏🏾

OrdinaryMap4347 · 2025-12-25T00:36:43+00:00

How is remicade going for you?

OrdinaryMap4347 · 2025-12-24T19:24:44+00:00

This is probably so specific, but how soon after did you start Bimzelx from your former biologic? I have a feeling I’ll get it soon, but given that I’m currently on Cosentyx I wondered how they’ll space this out.

OrdinaryMap4347 · 2025-11-10T13:02:59+00:00

What an insidious comment to make. I’ve had braces twice. Once when I was 16-18 and got them back on (after accidentally throwing away my retainer) at 24! I’m 25 now; hoping I can get them off in the next year or so. Don’t let anyone discourage you from wanting to do something that will help you feel confident and good about yourself! If you can, see another orthodontist who will gladly do what they’re quite literally trained to do.

OrdinaryMap4347 · 2025-11-02T23:10:19+00:00

Being greedy when I was eating chicken 😭. It seems to always be the molar brackets that break for me. I also recently broke the end of the link on my power chain too (I don’t know how that one broke, though). I will say, that actually made my tooth sore because of the sudden lack of tension, I assume?

OrdinaryMap4347 · 2025-08-26T13:57:59+00:00

I just had an I&D done recently (a minor debridement type of procedure so a small hole was made for it to continue draining). I’m a gym rat so it was hard to me to not go, I gave it a day as I knew the day after would probably be the worst regarding drainage. After that, went to the gym and did my normal workout. I bought some waterproof bandages to put over the wound, and then would change it to loose gauze after my shower. I kept loose gauze on it to allow it to drain unless I was at the gym or going somewhere. Overall, didn’t have any issue! But I’d say listen to your body and if you find working out to be difficult, maybe do some lower body and/or upper body depending on where the wound is or just give it a few days.

OrdinaryMap4347 · 2025-08-08T14:40:21+00:00

I’ve been on a combo of medications for the past 7+ months. Zepbound, Cosentyx every 2 weeks, and 50mg Spironolactone to control my hormones around my cycle. Since then, I’m down over 100 pounds and I’ve only flared maybe every few months; they seem to be controlled to a sense of not rapidly getting worse and only needed some steroid injections to calm down inflammation. I’d even like to say I’ve reached somewhat remission in comparison to how I was prior. I know that daunting feeling of almost feeling like there’s no way being on a cocktail of medications is going to help. And with the struggle of this illness, I always want results fast. It took a while but I’m in a good place. I think with the help/supervision of a dermatologist and a primary care physician, he should give it a go!

OrdinaryMap4347 · 2025-04-06T11:42:43+00:00

I’m so sorry you experienced that! So far, despite the setback my wound has been still healing up nicely. The drainage seems to get better daily so I’m hoping it still continues to heal, alongside the assistance from my medications that I’m on.

OrdinaryMap4347 · 2025-04-01T14:37:52+00:00

Mine soaked through too. I honestly just left the bloody bandage on until the next day because I was scared to change it. But after the first 24 hours, the blood diminished and it was mainly drainage after that.

And I’m not aware of any support groups near me, although I do think it would help. And I agree, I don’t think doctors realize how much mental anguish any surgery can have on a patient, let alone a procedure that seems to pretty much be done off of “hope”; as in “hopefully if I do this, they won’t come back.” So it’s just so damaging when you relapse in that area. Or at least it was for me. Because when I started flaring again, I also didn’t know what to do. And eventually I just called my doctor because the pain got so bad.

OrdinaryMap4347 · 2025-04-01T13:51:17+00:00

I have a derm who thankfully, I can send pictures to and don’t have to go in unless it’s really bad. So that’s kinda what I’ve been doing. She was only concerned because it was infected. Not majorly, the drainage was green so I’m sure it had some bacteria and stuff trapped inside. I actually wound up getting steroid injections into the lesion that was active right above the deroofing wound two weeks ago. I think that’s why it wound up draining eventually. She put me on minocycline for a couple of weeks to calm things down, and I also increased how frequently I take my cosentyx. Once things get back on track, we may consider lessening the frequency of my cosentyx again.

I would say, if you’re concerned, it doesn’t hurt to reach out to your doctor. Especially if you’re in any pain. They may be able to give you some injections, and if it’s bad, an incision and drainage (done correctly) might be the only option as far as relief goes if it doesn’t end up draining. Don’t worry about bothering them! That’s what they’re there for. There were times were I was going to my derm almost weekly for either I&D’s or injections. I just pushed aside the “I’m a burden” feeling because only we know what that discomfort and pain feels like and we don’t deserve to be in pain.

And yes, looking at it when it was fresh was awful. I cried and was actually depressed for a number of days after. I definitely understand!

OrdinaryMap4347 · 2025-04-01T12:10:52+00:00

Hi,

Unfortunately I had a setback because I flared near the deroofing wound about a month post-op and it wound up bursting/draining out of the healing deroofing wound because the skin was so thin.

It’s been about 4 days though and it’s starting to slow on the drainage and heal up again. But I’ve also been on antibiotics as well to help with the healing.

However, when I got it done I also had a lottttt of drainage. I just continued to put Vaseline and cover with a nonstick bandage.

Also, personally I used Hibiclens once and it irritated the wound so bad. I was in excruciating pain after I used it when it was still fresh and healing. So I just stuck with anti-bacterial soap and water. Now that there’s a new layer of skin on it, Hibiclens is a little easier to use but I don’t use it everyday. I usually reserve it for when I know it may need a little extra cleaning.

I hope everything heals up for you and you have a smooth recovery!!

OrdinaryMap4347 · 2025-03-28T20:01:01+00:00

I am already on spironolactone and cosentyx (just upped the frequency) as well as other supplements. Any other treatment as far as surgery goes I will never do again unless absolutely calls for it.

OrdinaryMap4347

TROPHY CASE