006 :: It never ends..

I'm too lazy to write alot.

I have a BRAND NEW lesion on my right inner thigh. It's been there for a few days, but I've been too lazy to type. I must upload photos at some point today when my phone is charged & I have the effort to. But the point is, for the last 4 days or so, this lesion on my inner thigh has been growing, and it fucking hurts.

It's starting to get to the point where it's hurting to walk, so fun times lay ahead. I have an appointment on Wednesday, so hopefully it buggers off before then so I can walk comfortably in peace, but know HS and how cruel it can be, I highly doubt it. Grrrrr. Stupid HS.

Perhaps I need to stick to my guns and go to hospital.. If it worsens, and it hurts alot to walk, I WILL go to hospital.

Boobie Monster is still hanging around, it's slowly starting to heal, It still has a hole that oozes pus on occasion, but it's getting there very slowly. It still doesn't look normal.. Normally when the lesion drains it's all fine and dandy. This one still looks like it's full of pus.

It's just not my month. It NEVER ends. Forever screwed :(

That is all.

005 :: FO! Boobie Monster

Boobie monster is still haunting me. It's turned into one of "those" lesions that is not going to drain itself completely and leave. It's going to take its sweet time.

So I managed to count atleast 2 layers of skin having been peeled away from the lesion, and then in the centre I noticed the pungent muck showing. I was relieved briefly, thinking that it was almost over. That I was finally going to be able to have this bugger drained. Only another HS sufferer would understand the mindset when you begin to see that yellowy/greeny coloured pus showing just under the skin, and the feeling that the end of this lesion is near. But nope, the lesion apparently has a mind of its own.

It drained a little, not much pus came out which was not normal considering its size. It wasn't until a few hours later that I realised it's one of those irritating lesions. The kind of lesion that teases you. It shows its head (pus under the skin), the cellulitis begins to disappear, but the lesion remains. Hard and lumpy, painful to touch, with a hole directly in the middle of it. Constantly leaking/weeping out pus with no intention of healing itself any time soon.

I've had lesions like this before, on my inner thigh. I know straight up, that this monsterer right here is going to scar like a bitch. As if my body was not ruined enough, I now have one more scar to dread looking forward to.

I can't bandaid it yet, the bandaids I have are way too small for this size lesion, and I really don't want to have to peel half my skin off when it's time to change the bandaid. I can't even afford to go and buy decent sized bandaids. I have $20 to my name to last me another 7 days. So it looks like I'm stuck with the boobie monster leaking, seeping, weeping all over every item of clothing I put on. Every item of clothing I put on potentially fusing with the lesion when/if it decides to close itself/heal up.

It's really not fun to have to peel clothing off a lesion where it's started to fuse. 

This disease is an absolute cunt of a thing, and I hate it. I seriously hate having HS. I would never wish this upon my worst enemy. No body should have to live with this disease. It's just unfair. I really feel that this disease has deprived me of what should be my best years. I'm only 23 years old for gods sake. I should be out in the world having a life, pain free, and enjoying it. Not purposely hiding myself away at home for fear of judgement from my peers, worrying about if I have lesions leaking through my clothing, having trouble functioning be it walking, moving my arms, sitting, etc.

Boobie Monster; Day 9 (Flash on)

It's been atleast 9 days since I first noticed you, probably even longer to be honest. 

But please;

KINDLY BUGGER OFF BOOBIE MONSTER.

You are NOT welcome on my body.

JUST LEAVE ALREADY.

004 :: Boobie Monster Day 6!

Day 6 of this horrible monster. Despite taking the anti biotics, and dosing up on Panadeine Forte, it's not helping all that much. The cellulitis part has gone down, KIND of. There is less of it, BUT I think it's more redder now, than it was before.

I didn't go to hospital, I haven't had the effort to. All I've wanted to do was just lay in bed and not move for fear of that instant sharp pain that HS brings.

The slightest touch to a lesion like this, is sharp, agonizing pain. And given the area this lesion has called home, and the effects of gravity, I'm quite rather screwed.

The two monsters on my underarm/bra line are abit better, they aren't hurting as much as this bastard is. I guess that is a start atleast... Hopefully it stays that way.

I'm not 110% certain just yet, but it looks as though I may have a copycat of this monster, on my OTHER breast, but on the outer part of the breast, not inner like this one. I'm hoping it isn't so, but I can already see some redness, and feel a lump not quite as big as this one, but still dreading it. Not to mention all the little bumps that are popping up, primarily in one of the worst places; the bra line. Oh god how I loathe bumps and lesions on the bra line. It makes it impossible to wear a bra pain free.

There is a lesion on my underwear line that is giving me grief, it popped up about 2-3 weeks ago, and then went away by itself. It seems to fill up abit like a blister, but instead of popping and going away, it doesn't pop, it just disappears. It's only tiny, about the size of a pea. It's interesting in a way, how sometimes the tiniest of lesions can be the most painful. It makes it awful to wear underwear, not to mention when "that time of the month" (or rather, quarter in my case) comes around.

All I know is...

SCREW

YOU

HIDRADENITIS

SUPPURATIVA.

Boobie Monster: Day 6!

003 :: Insult to injury

As if it wasn't alredy bad enough having that insane bastard of a lesion on my breast, now I've got these two little buggers on my left underarm. They may be tiny, about the size of a 5 cent coin, but they are driving me crazy.

I saw a doctor, not my doctor from childhood, but the "first available" who just so happens to be the normal back up doctor I see. It's just easier to see him within 5-10 minutes of being at the doctors office, as opposed to waiting up to 3 hours to see my childhood doctor. It's at the same clinic atleast.

He gave me a prescription for Cilex (cephalexin) 3 times daily, and Panadeine Forte. 

Now I normally have trouble taking anti biotics, especially 3 times a day. I'm forgetful. I don't always remember when I'm supposed to take them, or if I haven't taken them. It just slips my mind. I'm doing okayish so far, I think I've only forgotten 2 doses at most. But I'm trying!

The Panadeine forte on the other hand, is doing barely anything. I'm still sore. All it does is make me sleepy, and if I do manage to sleep from taking the panadeine forte, I'm out cold. There is nothing that will wake me up. So perhaps in a way that helps with the pain, BUT... Am I meant to sleep for 24 hours a day, just to avoid the pain? Is that really helping?

He also gave me a doctor, referring me to wherever I choose to go (Yeah, he doesn't put in a doctors name, or whatever when referring - I don't think thats a good thing?) but it was for hospital. So after looking back now on the photo I uploaded a few days ago of my boobie issue, perhaps it is time to go to hospital. I just don't have the effort to get there. It's such a hassle, having to strap on a bra, and then go out in public, in pain, not able to cup the monster on my breast to stop it from hurting, for fear of looking like a pervert. Not to mention the fact that he's advised me to avoid my local hospital, and travel to one in a town about 15 minutes (driving) over. I don't drive! Gahhh!

The reason he told me to avoid my local hospital, is after I mentioned to him the last time I went to hospital for HS. I was 19 or 20, with a letter from a doctor advising the hospital to perform surgery and give me IV anti biotics. The doctor at the hospital then turned me away with a prescription for anti biotic tablets. 

The first thing I learnt from my visit to the doctor, is that I made a mistake in accepting the doctors treatment. I should have spoken up, made a huge fuss, and demanded that they actually read the letter I had brought with me.

The second thing I learnt, was that my local hospital is not all that great, in terms of treating patients, and the available resources. The hospital in which he advised me to go to instead, has more resources, facilities, and a dermatology clinic (I think he said that, will need to look it up). So heres hoping if I do go there, that it's bulk billing, because being on centrelink, and spending majority of my money on bills, there is no way in hell I could afford to see a dermatologist, even if I only had to pay the portion that medicare doesn't reimburse.

My first concern with going to hospital is, how? Do I just rock up at emergency? Is there somewhere else I'm meant to go? I've only ever been to hospital 3 times. The first time was when I got turned away and given the anti biotic tablets. The second time and third time was for asthma, when I was struggling to breathe. 

Intoducing the bastards under my arm!

002 :: Boobie Monster

Wow, I thought it was horrible having a lesion on my inner thighs or my butt cheeks, How wrong I was. At least with lesions in those areas I could attempt to control some of the pain by cupping the lesion when sitting down, laying down, etc to position myself where it won't hurt so much. 

Right now, I'm sitting here with a lesion on my breast that feels about the size of a walnut in its shell, brand new, welcomed itself onto my body within the last 24 hours and insane inflammation. It's so red and I can feel the heat coming off it when I hold my hand 1cm away from the skin. 

I can feel the full weight of my breast taunting the lesion, it hurts. It really freaking hurts. I seriously feel like going to the kitchen, grabbing a knife, and cutting the lesion out myself. But it's only just the beginning. It's still only a red lump, all I can do is wait for it to fill up with that disgusting smelling putrid pus, and for the skin over top of the lesion to thin out so it can finally be drained, or pop itself. 

There is just nothing.. I.. can.. do. It's not fair, to have to feel this powerless to my own body. How am I supposed to live a normal life, when there are days that I can't even wear a bra, or underwear. I don't like going out in public without a bra or underwear on, but with booked appointments for things such as centrelink, job service provider, and others; I'm forced to. I'm forced to throw on a bra or underwear, that rubs against and irritates any lesions I have. I'm forced to be out in public, walking, moving around like a "normal" person, whilst I have up to several lesions at once causing me grief. I'm forced to keep a straight face, and keep it concealed from those I come in contact with that I'm in freaking pain. 

There is only a handful of people in my personal life that know about my HS, Only about 2-3 of my friends. I haven't told my family. It's not easy to. It's not exactly something you want the world to know. Not to mention, it gets hard to tell someone when you all of a sudden break down crying. Maybe some day I'll have the guts to tell them, but I highly doubt it. It's not easy having to hide it all in the back of my mind, and not have many people to talk to about it, but it sure beats having to open up to family and friends that I have this disgusting son of a bitch disease.

I'm getting away from what I logged on to vent about, and this further thinking is well, the tears are starting. Only really wanted to bitch about this lesion giving me grief, and the lack of options I have to help ease the pain. I can't support it with bandaids, dressings etc. I can't "cup" the lesion 24/7 especially in public or I'll look like a perve. I can't even take panadeine forte, as it doesnt do anything for the pain. All I can do is wait and come here to whinge.