HS has consumed 2/3 of my life.

As you know living with HS is one of the worst things possible. The pain is constant. In the last week I spent 4 days in the hospital. I am now 46 now my HS started when I was 15. Enough is enough. I talked to someone from Harvard they said they are working on a cure for HS bur have nothing yet. Man I wish someone would find something in my life time. We with HS have zero quality of life. im truly sick of being looked at or even feeling like a loser because of this disease.

Working with HS stage 3 is impossible. I try so hard but I just cant do it. I’ve tried earning money by doing educational videos on youtube about HS. It was working ok for a year or so then youtube changed the advertising rules now my videos are deemed inappropriate for advertisers. Its ok to put videos up of killing people but trying to help others with illness is not ok. So my point that was money taken from me again. I was reaching millions of people and will continue to do so. I just wish I could have kept the income from commercials.

When you have HS no one takes you serious not even medical professionals. They just assume its no bog deal. Kinda like acne or something. The pain is a 10 always non stop. Just this year I was kicked out of my brothers home for according to him using him. I was very sick the last year and he basically said I was a leech. I literally had no where to go. Thank god my best friends mom was willing to rent me a room. But its sad my own brother does not even trust me with how sick I am. Needless to say I was heart broken. So far 2018 has been the hardest year in my life with HS. It just keeps getting worse. I recently lost nearly 100 pounds and again my HS is worse.

If you guys have any ideas how to earn some extra income im all ears. I need to earn some so I can go to the Mayo Clinic and get myself back on track. Right now my life is miserable. I have no family to count on they dont think im telling the truth. I have 135 videos that they never watched once. They think because I look normal im not sick. Its so frustrating having no one. This disease ruined my whole life. I tried to make it in life and I did. I had a great company that made ton of money but then I got to sick to run it. Of course that’s when everyone walked away when the money dried up.

I’m never going to give up. Now i’m just in this alone. No family back up, very little friends even trust me anymore. Perfect example when I was in the hospital for surgery the other day not one person came to visit, not one. And it was a very serious surgery to remove HS from my privates. Not one person could take 15 minutes to visit me. And I am always the guy who helps everyone. Because I understand illness. I know pain. But no one ever takes HS seriously. I know they get tired of hearing about it on my facebook or whatever. So I stopped and only post on my blogs or in groups where other HS friends will understand.

Through my facebook HS pages i get tons of emails daily asking for advice and I love helping others. People that are new to the disease or just need to vent I will always be there for them. I just wish I could find a way to earn money. Maybe write a book on the facts of HS? There is nothing out besides BS scam books, etc. Ugh just so frustrated.

 

 

HS on my finger?

This was about ten days ago I ended up in the ER. They lanced it for me. Wow the pain was crazy. This is not where I usually get my HS but it happened and it sucks. It is looking way better now but very raw. But there is good news. The dr. gave me Cephalexin. I took 4 a day for 10 days along with 1 a day of doxycycline. WOW all of my areas are the calmest they have been in a year. They just ended today, but My regular Dr. gave me 10 days more for as soon as they start to flair again. I am sure they will flair soon but now I know something for a fact that will calm them down. So again talk to your Dr. about this. I also have been prescribed morphine for the chronic pain. So we will see how that works. A week without pain would be amazing!

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Day 5!

This is day 5 waiting for the thing to break. I think it is about 2 or 3 days away from that. You can see all the scarring under my arm. These things are ruining my skin and it sucks. The bad thing about hs like this is, is that it is to small go to the hospital as it is not ready to be cut. So you basically have to deal with the pain until it breaks. And this one is in a bad spot when your arm touched your body. I just hope it is gone by the 4th of July!DSC03221

PAIN! hidradenitis suppurativa, the pain never ends!

Some seriously bad pain today. Today it is located at my waist line and it SUCKS! Monday the 24th I am going too a new Dr. Hopefully this one has a clue. Like I mentioned a few post ago this is the worst pain ever and I am going through advil like candy. So hopefully he will give me something stronger.