Living With Hidradenitis Suppurativa
Hello to all,
I have been living with Hidradenitis Suppurativa since 1996 but technically I wasn't diagnosed until Jan. 28,1998. I won't forget that date because it was a day after my birthday. And on, Jan. 30 I had surgery to have my Sweatglands removed from under both armpits. The last 11 1/2yrs. have been a living hell. With each year I have gotten worse. It all started with my armpits then it moved to the breasts and the last 6yrs. have been the worse of all my buttocks & groin area. The groin area has been one of the worse parts of all this for me. I have so much damage to the area that I am reluctant to date or even think about a relationship with anyone. I have also been hospitalized several times because of secondary infections I have gotten to my legs, I can't even begin to tell you the pain from that. I will tell you more about the legs issue cause most people don't understand that since that area doesn't sweat. Well its not Hidradenitis Suppurativa that infects my legs but its a secondary infection caused by HS. It starts as all flare ups do, then it gets bigger and it eats away at the skin and flesh. Eventually, a big area of my legs will have no skin. I have to go on IV antibiotics, so I am in the hospital for several days, which I am sure everyone on this site is very familiar with (IV Antibiotics). Then I am sent home for another 4 to 6 weeks on IV antibiotics. I have been through this process 7 times and I pray the seventh time was the last! I have been to so many specialist and I have loss count on how many different medications I have been on. Since being diagnosed with HS I have also been diagnosed with Degenerative Osteo Arthritis and Depression. Some doctors have said they think this condition is hereditary, which I do believe is true since my Sister has also been diagnosed with HS. I have been going through this so long and read so much about it I feel I know more than the Doctors most of the time...lol
I am unable to work because of my condition so I have been on Disability since Sept.1999. The 1st time I applied on my own without a doctors report so I was denied. Then I applied the 2nd time with my Doctors Disability report and I was approved quickly. Having that report from my doctor made the difference. Sorry to say that in recent years it seems to be harder for others with HS to get disability. If the people in the Disability offices who make the decisions could live with HS for one day when we're at our worse during a flare up I feel approval would be much easier. I feel so alone sometimes and that makes each day a struggle but I will continue to fight HS everday until the battle is won.
Hidradenitis Suppurativa is a chronic, debilitating and painful disease but it does not make us any less Human.
If there is anyone else like me who feels alone and you need someone to talk to who can understand what your going through. Please leave me a message and I will contact you with my personal email address.