Hidradenitis Suppurativa Support Group
Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...
When I first came across this board I was super excited to find out that there are so many people dealing with what I've been going through for the past couple of years. And at first it was kind of comforting. But as I was reading through other people's posts I must say I feel more sad and lonely now than when I began. I thought seeing people who are older than me who have been going through this way longer than me would bring me some type of solace, but instead all I can think about is how everyone is still in the same position as me. Nobody has broken ground. Nobody is "ok", and that really bothers me. I never wanted to look 20 years into the future and see my health in the same place, or even worse than what it is now, but thats really all I'm seeing when i'm reading other posts. I'm sorry for being such a mood killer, i've been feeling this way for some time now so I guess this is where i'm going to vent.
I got diagnosed with Crohns when I was twelve. The hs didn't start until around fifteen or so. And even then it was a lump here or there. Sometime between then and now (I'm currently 22 years old) things got really bad. I'm in and out of the hospital all the time, but not to manage my Crohns, just for my hs. The worst part about it all is that this is not a known disease. So aside from my immediate family, nobody else has any idea what I'm going through. Even doctors. I've been on antibiotics for years until I finally refused to take them anymore. The same for remicade. I was on it for years and it didn't do a thing for me. So I took it upon myself to stop showing up for the infusions. This made a lot of doctors mad. But one thing I don't like is when you insult my intelligence. Does it make sense to keep pumping chemicals into my veins that cause nothing but strange side effects? no. not only that, but since I started it things have gotten increasingly worse over the years. If you were to look into my medical files you'll come across some doctors saying that I'm "hard to deal with because I refuse to listen to orders" But I wouldn't call that "hard to deal with", I might call it common sense. If something isn't working for you, try something else.
One thing I really don't understand is doctors lack of knowledge when it comes to the condition. I get it, its not a known thing. But if you are a doctor isn't it your job to exhaust every possible option (including natural approaches) in order to make the patient feel better/ put them in remission? Especially if the patient is in the hospital 3+ times a week.
I can't explain to you all how depressed I am at times. Something about my happiness goes down with the sun each day, and at night i'm left with nothing but my thoughts. I used to pray so much, I just wanted god to heal me. Now I just think that maybe god has his mind made up you know? People say anything is possible, so maybe people like us are meant to suffer so that we can help someone else. And maybe that is a sucky way of looking at things, but it keeps me from waiting on a miracle that may never happen and forces me to just find a way to get through my day. One day at a time.
Pardon my honesty. Sometimes I don't want to live anymore. Sometimes I wish it was terminal, I wish it came with a deadline. I never wanted to think like this. I've always been the one uplifting other people. I'm the one people come to when they need advice or some words of encouragement. But what happens once the advisor needs advice? Who do I go to? It gets incredibly hard listening to my friends babble on about their problems. I must say, I'm jealous of their problems because the problems that they have aren't real. Its always an easy fix for them. I always want to tell them to go find something real to complain about because as far as I'm concerned, if you're young and you have your health there is nothing that you can't figure out. Meanwhile I'm studying for university finals from a hospital bed and you can't make it to class because you're tired? I'm young, sick and pissed off. Everything hurts all the time and I've gotten too comfortable with taking 7-9 tramadol a night just to get me out of my thoughts and into a drug induced sleep. Only to wake up and do it all over again once night comes. I'm 22 and I feel 59.
Like I said, sorry to be a bummer. Everybody here seems so positive, and I look up to you all for it. I'm just sick and tired of being sick and tired. And I guess I needed to vent. Thanks for listening.
- e
I got diagnosed with Crohns when I was twelve. The hs didn't start until around fifteen or so. And even then it was a lump here or there. Sometime between then and now (I'm currently 22 years old) things got really bad. I'm in and out of the hospital all the time, but not to manage my Crohns, just for my hs. The worst part about it all is that this is not a known disease. So aside from my immediate family, nobody else has any idea what I'm going through. Even doctors. I've been on antibiotics for years until I finally refused to take them anymore. The same for remicade. I was on it for years and it didn't do a thing for me. So I took it upon myself to stop showing up for the infusions. This made a lot of doctors mad. But one thing I don't like is when you insult my intelligence. Does it make sense to keep pumping chemicals into my veins that cause nothing but strange side effects? no. not only that, but since I started it things have gotten increasingly worse over the years. If you were to look into my medical files you'll come across some doctors saying that I'm "hard to deal with because I refuse to listen to orders" But I wouldn't call that "hard to deal with", I might call it common sense. If something isn't working for you, try something else.
One thing I really don't understand is doctors lack of knowledge when it comes to the condition. I get it, its not a known thing. But if you are a doctor isn't it your job to exhaust every possible option (including natural approaches) in order to make the patient feel better/ put them in remission? Especially if the patient is in the hospital 3+ times a week.
I can't explain to you all how depressed I am at times. Something about my happiness goes down with the sun each day, and at night i'm left with nothing but my thoughts. I used to pray so much, I just wanted god to heal me. Now I just think that maybe god has his mind made up you know? People say anything is possible, so maybe people like us are meant to suffer so that we can help someone else. And maybe that is a sucky way of looking at things, but it keeps me from waiting on a miracle that may never happen and forces me to just find a way to get through my day. One day at a time.
Pardon my honesty. Sometimes I don't want to live anymore. Sometimes I wish it was terminal, I wish it came with a deadline. I never wanted to think like this. I've always been the one uplifting other people. I'm the one people come to when they need advice or some words of encouragement. But what happens once the advisor needs advice? Who do I go to? It gets incredibly hard listening to my friends babble on about their problems. I must say, I'm jealous of their problems because the problems that they have aren't real. Its always an easy fix for them. I always want to tell them to go find something real to complain about because as far as I'm concerned, if you're young and you have your health there is nothing that you can't figure out. Meanwhile I'm studying for university finals from a hospital bed and you can't make it to class because you're tired? I'm young, sick and pissed off. Everything hurts all the time and I've gotten too comfortable with taking 7-9 tramadol a night just to get me out of my thoughts and into a drug induced sleep. Only to wake up and do it all over again once night comes. I'm 22 and I feel 59.
Like I said, sorry to be a bummer. Everybody here seems so positive, and I look up to you all for it. I'm just sick and tired of being sick and tired. And I guess I needed to vent. Thanks for listening.
- e
- e