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.
Hello everyone I hope your all doing well. I just wanted to give you an update on the book I mentioned I was reading and I do not have my final decision on it yet. I have to follow the protocol first. Its hard though it is basically wanting you to do the complete Paleo Diet. Eating all raw foods. People will argue there are good things about it and yes there is, but the food sucks bottom line. I am working on it though if it does work for me obviously id stick to it for life. So far I have cut out Sugar, Dairy and Gluten. It has been a month and so far I have no relief at all nothing. But there is still a long way to go so I will keep you updated. I am sure like the book mentions it can be one thing. I just need to find my trigger. So far no luck but I will do this until hopefully I find it.
Last Saturday My Hidradenitis suppurativa was out of control. It gave me a fever of 104 degrees. That was the highest I have ever had. I just got out of the hospital after a five day stay. I was pumped antibiotics through ivs. Now things are calm and I am home, but I have to say this is getting very hard to handle. The older I get the worse this is getting. I met with 3 doctors and a surgeon. Nothing they can do. My HS is so bad it is literally making me bed ridden. I will not give up!!!!!
This morning was extremely painful. This picture is of bandages from my right but cheek. I have to change these constantly during huge flairs like this. I Went to the Dr. Yesterday and he has me on 5 antibiotics a day for a while. He is allowing me 4, 10mg percocets a day as well as 12 advil a day. Hopefully I can have the pain dialed in soon cause this sucls right now. On a good not weight loss is coming along well the Dr. was very happy to see that. Thanks again everyone for checking my blog. And for everyone with HS stay strong my friends!!
Hello everyone. No significant changes since my last post. Actually things are pretty much exactly the same. 2014 was a rough year hopefully 2015 is less painful. I know I am late but happy new year to everyone and thank you all again for sharing your stories and comments. Remember us with HS are not alone.
Wow I had a huge week this week on Tuesday morning December 13th I was rushed to the hospital for the huge growth cyst on my groin. On Wednesday the performed surgery to remove the cyst and clean out the infected area. The surgery took nearly two hours things were so bad. The cyst was on the left side of my groin and grew to the size of a baseball, but then it started leaking into my groin and my groin swelled HUGE. You can see a few pictures in the picture section. This was serious so painful I thought I was going to die. The Dr. Told me I was very close to losing my testicles. He said if I waited another day I would have. I was hospitalized util Friday night. From Tuesday through Friday I was on an IV of antibiotics. I did not sleep the whole week the pain was so bad. It is Sunday now and I am at home feeling much better. The groin in packed with gauze and i have medical home care taking care of the wound for the next 7 days. I mus say out of the 23 years i have suffered with HS this was the worst i literally thought I was going to die!