This condition is more commonly referred to as HS since its a mouthful to say and usually gets heads cocked to the side when repeated. This condition is something I wouldn't wish on my worst enemy, its that bad. I get frustrated with doctors when they refer to it as an acne issue. Its far from acne. It involves the sweat glands. In common terminology, basically when your glands (which we have hundreds if not thousands throughout your body that sweat all of the time) fill up with toxins and bacterias, can't process them any longer and rupture out of the body. The initial appearance may resemble a boil starting, but to someone who has it, we know whats going on under the surface to make that appearance and we know whats to come. Because you sweat all of the time, the fear of heat of any kind is very real. I sit in my home constantly regulated between summer and winter at 68 degrees. Even then, its not enough to stop it. You have to move and clean which causes you to sweat, which OUCH! causes horrible things to happen to your body. Someone with this needs an awesome support system considering the quality of their life is being greatly effected. I have been told that unless the constant, never really goes away infection doesn't kill me, or the constant open wounds don't cause a horrible cancer and kill me, then I could live to be a 100 with this. I never know what to pray for. I am constantly on antibiotics which after a while, start to lose their effectiveness. Yeah! =) I say that sarcastically. These lesions/ruptures when they occur effect your hoo hoo, your inner legs, your butt, under your arms, your breasts if your a woman, basically anything that controls your mobility. So it ALWAYS hurts to move at all. The pain feels like when it first starts and swells like someone is cutting you with a dull pair of scissors. Then when the rupture is in full bloom, you may be able to a I&D yourself if your clever, but sometimes require outpatient, your totally awake feeling everything operation, well because Dr.'s typically have never felt this and don't understand that this procedure feels like battery acid being poured on your skin. The lovely infectious drainage that comes out feels like acid to the skin, oh and smells to high heaven. Because your flesh and skin is basically rotting and decaying at this point, no matter how much you bathe, you always have a foul odor about you. The only way I can compare is, the smell of death, like a dead body. Then because after dealing with this after a few years, the antibiotics that have kept you alive up until this point, start to lose effectiveness from excessive use, you now require grueling, painful, surgeries. Because this is not a well known condition, you are usually the surgeon's guinea pig. This is fun because he usually f**k's up. Then you are in more pain and infection than you started with. Oh, and because of chronic infection, the surgery site always opens up, which means "years" of healing literally because now you have to heal from an operation like you never were stitched up. Have I excited you yet? Then you have the embarrassing lesions that always seem to make themselves known to the people around you. You would think people would be sympathetic. WRONG!! They immediately go into denial because no one wants to think about dealing with that or they immediately become scared that you are contagious with that Step B infection, you know the flesh eating one that scared everyone in the 80's like the swine flu does now. I haven't got to the best part yet. You are usually left by doctors to deal with the constant pain yourself. If you are lucky enough to find one that will actually give you pain medicine when you need it, which is basically all of the time, then you immediately get accused from everyone you know as being a "addict". That you should learn to cope with all of this with your own free will because you know "mind is over matter". As if willing this away and doing a few sit ups will take care of your problem. Gee! I had no idea. Is that all I had to do? The lack of compassion and sympathy with this condition starts at the doctors and trickles down to your home. Most often people relate to health issues in time. There is always a beginning and an end to just about anything that is a serious as this one. They know what to expect typically. After a significant time period of dealing with this, they get tired and move on, leaving you with greater expectations than what you can handle and the irony is, with time this conditions worsens but doesn't end. Its usually then when you turn to strangers waiting in doctors office with you for a glimpse of sympathetic reaction. This condition you will find is often misdiagnosed with doctors and misunderstood by people. There are no magical miracles waiting around the corner. The only hope you can cling to is that you have a good doctor that diagnoses you correctly at an early stage. Hence to avoid years of agony. The earlier it gets treated, the greater chance of remisssion. If it has a chance to fester and develop intelligent sinus tracking, you are less likely to get any relief for it. That is the cold hearted facts about it. I personally would rather know the truth and what to expect, rather than have smoke blown up my behind. Now the one upside you have (and you really have to look at it as one to mentally make it thru, if you can call it one) is that you do qualify for social security irregardless of your age. I recieved my first check within 30 days of the application with no denials. I was only 30. In a system that normally denies most people even chronic cancer patients, for them to say yuppers! first time, that is saying alot about the condition. That tells you how bad it is. Now there are some great online support groups that you can join. Some of the groups may be large enough in certain areas because of certain industrial exposures causing a high population of sufferers, that actually have the occassional "meet up". Now if your lucky enough to be close to a group that does that, thats great. Because at least then you have the fortunate experience of meeting other people vs. just conversing online with them (face to face conversations makes the situation "real" in your head vs. someone just saying they "get it"). Seeing someone else that is suffering and seeing their battle scars and making that comparison and sharing ideas of certain things that helped with the condition or educates you on what to expect realistically, helps with the mental struggle with this disease. HS affects so much more than just your glands. It causes so much infection that eventually your immune system becomes fragmented, leaving you vulnerable to every germ that someone coughs in your direction or leaves behind on a shopping cart. As you can tell by this blog, it also compramises your mental well being, making you bitter, edgey, and depressed because of multiple reasons (i.e.; PAIN and the fact that your brain still works, you still have the same wants and desires for yourself in life either with a family, or for work, but your body does not allow to follow through with these desires) Anyone would be depressed. There are ways to adjust and somehow you do find the strength to smile occassionally and somewhere between all the road blocks you encounter, you do establish coping skills that work for you.Reply Follow This Thread Stop Following This Thread Flag this Discussion
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