this is a grumpy bitchy venting nuclear mushroom cloud post. no happy bluebirds or squirrels today.
i have Hidradenitis Suppurativa (hs for short). i have had it for over 4 years. basically it means i get nasty painful boils all over my body, mostly my breasts, bottom, groin and arm pits. this disease affects about 1-2% of the population and has no cure. initially i was treated for a few spots on my pits. more for vanity since i was wearing a sleeveless bridesmaids dress and didn't want the creeping crud showing. but 4 years later it has become debilitating and quite possibly life threatening. in the past week i have had huge boils on my breast, my crotch, and a string of them lining both sides of my ass crack (for lack of a better description.) i spent the past week sleeping on the sofa since sleeping on my back aggravated the boils on my butt but i couldn't sleep on my front since the ones on my boob hurt.
last week was my yearly gyno visit (oh joy). i hate going cos every year the CNP always finds something wrong with me - last year it was my sugar/BP, the year before that i had to lose weight (and we know how well that went) and the year before that i thought i had a lump in my breast but it was nothing but i still got badgered for it. this year, it was the fucking carbuncle on the boob that led the CNP to refer me to the local breast health center because they couldn't guarantee that it WASN'T cancer and since they didn't know what it was they wanted me to have an ultrasound.
now, i'm 34 and i know i'm well within the age limit of getting breast cancer, but it's still scary to hear "we want to rule out anything but you might have cancer". so i had my ultrasound last thursday and indeed the fluid on my breast is from the boil, but they want to biopsy it anyway to make sure. i had that appointment today (and it was indeed PAINFUL). now i have to go back in 3 weeks for a mammogram to make sure that my spots truly are just HS and not cancer.
this disease sucks. it's ugly as sin. it's painful. IT HAS NO CURE. i should be grateful that the boils aren't visible like on my face or something but it's just as bad when it hurts to sit or walk or move my arms. some days i walk like i have a load in my pants becos the ones on my crotch or ass hurt so bad. i must be an anomoly becos NO ONE has ever seen a case as severe as mine. i've had derms document it with photos. i've had cortisone shots to alleviate the inflammation (which helps except i'd need shots every day since i get a new one always). this disease reminds me of the centralia mine fire. it tunnels underneath my skin and pops out with ugly painful swollen lesions. and they never go away entirely. a boil will get engorged then go away and then come back again. THEY NEVER GO AWAY.
i'm done seeing my derms at GMC. they keep me on antibiotics and panoxyl (which didn't help and gave me systemic yeast infection but that's another story...) i got an appointment with a local derm for JUNE, and finally a doc down at hershey for AUGUST. i realize that there are others out there with more serious skin problems than mine but damn if this disease doesn't make me feel like shit and on top of everything else HURTS.
this has been such a shitty week. i hope this one is better.
i have Hidradenitis Suppurativa (hs for short). i have had it for over 4 years. basically it means i get nasty painful boils all over my body, mostly my breasts, bottom, groin and arm pits. this disease affects about 1-2% of the population and has no cure. initially i was treated for a few spots on my pits. more for vanity since i was wearing a sleeveless bridesmaids dress and didn't want the creeping crud showing. but 4 years later it has become debilitating and quite possibly life threatening. in the past week i have had huge boils on my breast, my crotch, and a string of them lining both sides of my ass crack (for lack of a better description.) i spent the past week sleeping on the sofa since sleeping on my back aggravated the boils on my butt but i couldn't sleep on my front since the ones on my boob hurt.
last week was my yearly gyno visit (oh joy). i hate going cos every year the CNP always finds something wrong with me - last year it was my sugar/BP, the year before that i had to lose weight (and we know how well that went) and the year before that i thought i had a lump in my breast but it was nothing but i still got badgered for it. this year, it was the fucking carbuncle on the boob that led the CNP to refer me to the local breast health center because they couldn't guarantee that it WASN'T cancer and since they didn't know what it was they wanted me to have an ultrasound.
now, i'm 34 and i know i'm well within the age limit of getting breast cancer, but it's still scary to hear "we want to rule out anything but you might have cancer". so i had my ultrasound last thursday and indeed the fluid on my breast is from the boil, but they want to biopsy it anyway to make sure. i had that appointment today (and it was indeed PAINFUL). now i have to go back in 3 weeks for a mammogram to make sure that my spots truly are just HS and not cancer.
this disease sucks. it's ugly as sin. it's painful. IT HAS NO CURE. i should be grateful that the boils aren't visible like on my face or something but it's just as bad when it hurts to sit or walk or move my arms. some days i walk like i have a load in my pants becos the ones on my crotch or ass hurt so bad. i must be an anomoly becos NO ONE has ever seen a case as severe as mine. i've had derms document it with photos. i've had cortisone shots to alleviate the inflammation (which helps except i'd need shots every day since i get a new one always). this disease reminds me of the centralia mine fire. it tunnels underneath my skin and pops out with ugly painful swollen lesions. and they never go away entirely. a boil will get engorged then go away and then come back again. THEY NEVER GO AWAY.
i'm done seeing my derms at GMC. they keep me on antibiotics and panoxyl (which didn't help and gave me systemic yeast infection but that's another story...) i got an appointment with a local derm for JUNE, and finally a doc down at hershey for AUGUST. i realize that there are others out there with more serious skin problems than mine but damn if this disease doesn't make me feel like shit and on top of everything else HURTS.
this has been such a shitty week. i hope this one is better.
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