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12/14/2011 12:12 PM

New member, male, hope to get to know all of you.

RedSoxSalem
Posts: 44
Member

Hey there guys. You can call me Salem. I live in Indiana, and am an avid boston sports fan. I also suffer from HS. While I like to think my case is bad, it's nothing like some of those horror stories on the internet. But, I'm unlucky enough to pretty much have at least one flare up at all times. I generally get about a day of rest with no painful sores about every other month. The rest of the year, though, is slowly sitting on the toilet, avoiding sitting on one, and having to sit awkwardly on the couch to avoid hurting one.

I'm a guy, first off. Which as this disease (from what I've read) strikes mostly women I'm sure I'm in a minority here. My wife is VERY understanding of my condition, although she doesn't actually know what it is. I only recently found out what it was a few months ago. Up until then, I was going with what a doctor told me a few years ago about them being ruptured blood vessels that had turned into boils. Boy, was that doctor an idiot. He's been wrong about two of my diagnoses now, and I have not seen him since.

I'm very into sports, politics, and debate. While I do not believe, I am very spiritual and love discussing religions. I am a smoker, and I have read everywhere how that's worse for it, but frankly smoking is about the only thing that makes it bearable now days. I get a real bad one and can just sit down, relax with a nice American Spirit and forget about it. I am also a larger fellow. I weigh just under 350 pounds (used to weigh more than that, but got pneumonia a few months ago and lost about 30 pounds during the process of that). My wife, who weighs around 100, looks so silly standing next to the goliath that is me. Buut, I'm no more than a big teddy bear.

I hope to get to know all of you, and be at least semi-regular around here. Share my life stories about HS, and some not about it. Sorry for all the real life information, but I think coming here and saying I have HS is a bit redundant. I want you to know ME too.

If anyone has any questions, I'd be happy to answer them. But outside of that, Go Sox and let's talk some HS.

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12/14/2011 06:49 PM
Chayanne
Chayanne  
Posts: 12
Member

Welcome to the group! I have joined this group not too long ago too. I think you will like it here. I am in a couple of other groups on MDJ, and have found a new family here. I welcome you with open arms and hope we can be as a family to you too!

12/15/2011 09:52 PM
RedSoxSalem
Posts: 44
Member

Thank you for the warm welcome.

12/16/2011 12:05 PM
4angels
 
Posts: 3
New Member

Hi there Salem, I'm new to the group also as a parent of a child with HS (I suspect that I may have it too but have yet to be diagnosed) I hope you will meet lots of new friends on here to help and support you through this truly awful disease. Well done you for joining and sharing your story Smile Sam (mum of Aimee)

12/16/2011 09:00 PM
RedSoxSalem
Posts: 44
Member

Hey Sam! How old is Aimee? You should definitely have them join support groups like this. Just knowing I can come on here is already helping me mentally. Hell, it gave me the strength to finally tell my wife what exactly it is that causes me to bleed all over the bed sometimes. I felt a bit silly since she kinda just said "Oh? That's cool that you know now." and moved the conversation. I was worried she would think it was gross or something, and that's exactly the kind of effect this disease has on you.

I hope you too get new friends not only for yourself, but for Aimee. None of us have to do this alone.


12/17/2011 08:57 AM
oregonnative
oregonnative  
Posts: 5766
Group Leader

Salem and Sam,

A warm WELCOME to our little family!! Smile

Salem, it is so good to see a new man on the block. Maybe some of the other guys will come out of their shells if they see an active member here. You are right about HS effecting more women than men, but I believe there are way more men who suffer from this sucky condition than we realize. I think they are just more reluctant to share what is wrong, even with their spouses or family, it seems now.

Just wanted to tell you how much I admire your openness and generosity of sharing. It will help a lot of others in time. I just know it will!

@ Sam, I also am wondering how old your daughter is. If she is a teenager, hope she will also join in. We have many younger members whom she would have a lot in common with, if that's the case. Thanks for joining in and welcoming newbies too!! Always so nice, especially when us old fogey stogeys are under the weather. Tongue

O.K. I saw in the next thread that your daughter is 15, Sam. Smile

Again, welcome to the group. Smile

Karen

Post edited by: oregonnative, at: 12/17/2011 09:00 AM


12/17/2011 09:16 AM
RedSoxSalem
Posts: 44
Member

Hey Karen! I hope to achieve the same too. I'm not the only man on the planet with this disease, and just like you said maybe more will be more open knowing that there is at least an active guy already on here talking about his issues.

I too, Sam, hope your daughter joins in. Just being a member of this group has already helped me.


12/29/2011 11:47 AM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

Hello Salem! W00t My name is Candace and I am a 27 yr old female from Oklahoma. I am so glad that you joined our little family (and the same to you too Sam & Chayanne!)

I have not been able to get onto our group recently but am working to improve this area. I am suffering a really angry alien currently on my bum (this is a new area my HS decided to move to, I usually suffer on both sides of my groin...ugh) but that is not excuse to stay away for as long as I have! I usually check in from work... but a few months ago I got a new co-worker and let's just say that it stole all of my free-time away. Sad Regardless, I am ready to jump back into action in full swing! Tongue

I am thrilled to hear that you were recently correctly diagnosed, because we all know how annoying/embarrassing/self-destructive it is for so many doctor's to feed you incorrect information and you are left feeling helpess & "dirty." But-- you are not alone & we have all faced those battles and it really helps to have this army HS family right behind you! Grin

I am also pleased that you have a great, supportive wife who understands, if not what HS is, she knows that it's not something you can prevent or from anything that you did to yourself. My husband is very supportive and can physically see my pain level from the facial expressions I make when I wake up in the morning. This lets him know ahead of time if it's going to be a "good" easy day or a "bad" rough and painful day for me. It helps just having his support & care!

Anyway, so nice to meet you and I do hope that we get to learn more about each other and all of our daily battles through life with this horrible disease. At least we are NOT alone. Laughing <3 Candace


01/03/2012 06:36 PM
RedSoxSalem
Posts: 44
Member

Hey Candace. Just now saw your reply to my post. I couldn't be more glad that I joined. I've already gained so much confidence about my HS just from this group. This week I intend to post something on FaceBook informing everyone I know about HS, why it is that I can't really leave the house as much as they can, and why I sometimes walk the way I do.

Speaking of walking the way I do, my wife often jokes about the awkward penguin walk I do when I get really bad flare ups on my inner thighs. It's little jesting like that that helps me not take this so seriously and think of it as some sort of cancer that will kill me, and instead remember it's really just a skin disorder right now. That all things considered I'm quite healthy. I couldn't suggest more that everyone here do their best to joke with themselves about it too. It really helps take a load off.


01/05/2012 11:36 AM
CanFizzle
CanFizzle  
Posts: 1476
Group Leader

Salem, I completely relate to needing to make fun of HS as a coping mechanism. I personally feel like I am walking like a bow-legged cowboy that just rode across the plains for days without rest- crooked and stiff haha! Silly

I think laughter is one of the best medicine for people who suffer like us!Without it, HS can easily suck you into depression and it's very difficult to dig yourself back out. It's really helpful that you have a supportive wife that will care & laugh with you! My husband is the best support system I have, and he always does his best to make me laugh- even when I do not want to! Laughing But, staying jolly and positive are one thing that (most of the time) keep me going day-to-day. When you are completely down for weeks on end, it's hard to imagine the good things... but I at least have some dogs that I can love on and that brightens anything! Well, I look forward to hearing from you again soon & hope you are having a pain-free day (so at least one of us is!) HAHA! W00t <3 Candace

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