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,...
I take so many pills a day, get infusions, am on anti depressants for this severe depression i've had since this condition and on top of that im anemic so I have to get iron infusions because of that. I am truly exhausted. I'm 22 years old and every day is one big blur. Every doctor tells me something different. To be honest it feels like everyone is just guessing. I went to the doctor this morning and they want to start me on chemo therapy within the next two weeks along with one other medication that I forgot the name of. The the chemo is called 6mp.
Has anybody had this medication and have seen progress with their health. I don't like to jump into things. Especially more medication. I'm tired of medication and i'm tired of nobody knowing what to do with me. I need help and nobody seems to have the answer. I'm constantly asking god what did I do wrong? what do you want me to do? It's been over a decade and I feel like i'm at the end of my life. And yet my life refuses to slow down for just a second to give me time to catch up. My anxiety is at a new high. I have no idea what to do or what to believe in anymore. I don't even know why I'm writing this. I guess I just want to put this out there to people who may understand.
-e
Has anybody had this medication and have seen progress with their health. I don't like to jump into things. Especially more medication. I'm tired of medication and i'm tired of nobody knowing what to do with me. I need help and nobody seems to have the answer. I'm constantly asking god what did I do wrong? what do you want me to do? It's been over a decade and I feel like i'm at the end of my life. And yet my life refuses to slow down for just a second to give me time to catch up. My anxiety is at a new high. I have no idea what to do or what to believe in anymore. I don't even know why I'm writing this. I guess I just want to put this out there to people who may understand.
-e
I have heard about chemo for HS but know of no one who has done it. Obviously you are in stage 3 for it to be that desperate. My friend here sister joyce recommend the HS Institue of Ohio. You may want to mssg her here. She has a lot of knowledge.
Also, please know that if you need to vent or whatever this is the best place to do it :) We are all going through the same thing. Just please have hope that one day things will get better and try to be positive. Don't let HS take that away from you too! I also recommend researching on the internet. I don't care what people say, that's where I found a name to a lot of my health issues including HS.....but it wasn't for a dr I never would have known I was diabetic until I was prob in a coma or dead. Use your judgement :)
My opinion - I haven't any qualifications here - is that if I were a doctor, I might give careful consideration to just how much a role microbes might be playing in present symptoms, and how much that carefully selected antibiotics might give similar results to chemo, without so much potential for side-effects.
I'm sure you're not just imagining it that a lot of doctors are just guessing when it comes to HS, I think that is its nature is that its a complicated disease and difficult to understand - I guess that's the bad news that goes with the good news that it's not in the biggest hurry to be rid of me altogether?
I think a lot of us have probably gotten that impression that professionals are often just guessing, and I think I'd be even more sure that a lot of us have been through the other things you're going through also. (I know I've asked myself more than once what I did to rouse the anger of the Powers That Be). :-)
I like to believe that research may have already given us most of what we need to know to understand HS, and now it just needs people to sort out the pieces and put the puzzle together - that may even be us patients before its doctors.