009 :: Still kickin'!

Apparently it's been 1.5 years since I've been here.. So much has happened, but sadly, not much has changed in regards to HS.

In the last quarter of 2013, I began seeing an actual dermatologist, who has been amazing so far, it's just a shame that nothing is really working. He had me on "Dapsone" for a little while, then "Methotrexate." Currently and for the last couple of months, he's had me on "Imuran" which is an immunosuppressant. 

Now that we're heading into Summer, getting a very realistic idea of how this drug is working (or not working) for me. For starters, I'm still covered in HS flareups. If that wasn't bad enough, lets throw a few colds in the mix. Yup! I've had two colds this month! 

The first one was around the ~9th or so of December. That one wasn't overly bad, except for the fact that it triggered my asthma to go into overdrive. I'd asked my parents to take me to hospital as I couldn't breathe, barely around the corner from the hospital I noticed that I was breathing a bit better (probably from resting in the car, not moving around etc which was sending me s.o.b), so they turned around and took me to the medical center treatment rooms instead. (Ironically, half way to the medical center, I started struggling to breathe again, HAH!) Spent a few hours at the treatment rooms getting o2sats and the like checked, temperature, few doses of ventolin nebs, prednisone, symbicort. o2sats were around the ~80 mark when I got there, and around the ~97 mark when I left.

The second one - ohboy. Thanks Santa! Just what I wanted for Christmas! ANOTHER freaking cold. EXCEPT. This one was WAY worse than the first one. This cold (still have it) has been utterly chaotic. Throat, Nose, Ears - the whole lot, aches, pains, headache. I saw a doctor at the medical center on Boxing Day, and he wanted a blood test to check white blood cell counts etc. Possibly thinks the immunosuppressants are messing around with me. I think they sure are. I'm 84% certain that if I wasn't on them, I would never of had TWO freaking colds in Summer!

Colds aside, still no real progress on the HS side of things. Still getting flare ups, still feeling like utter crap, and emotionally drained from it all. I'm counting down the days until late June 2015! I joined a health fund in June this year, in the hopes of getting surgery done to well, remove the sweat glands and hopefully eradicate some of the current HS areas. As far as I know, there is a 1 year waiting period for pre-existing conditions, a $450- one time excess each year that the hospital cover is used, and something about because I went with HCF, there should be little to no out of pocket expenses surgery wise, when using a participating doctor? Probably time I start doing more thorough research into that, to be more prepared.

So that pretty much sums up my life in a nutshell right now. Horrible drugs, Horrible colds, Horrible HS lesions, and anxiously awaiting going under the knife to cut the HS away!

008 :: Must.. blog.. more

Boobie monsters. No longer just one, but now TWO. One on each freaking side.   One settles down, the other flares up, and vice versa. Boobs are meant to be fun, not hell :(

General asshat Surgeon

Saw a douchey doctor, who criticised me for wearing a bandaid on a lesion that was in the icky "slow draining" stage. I had been out of the house for 5-7hrs at this point, and needed something to well, keep it from seeping into my bra/clothes, and the asshat scolds me for using a freaking bandaid.

Then the asshat continues to insult me, telling me "ITS NOT HS. IT'S A STAPH INFECTION" first off, I'm quite sure (MIGHT be wrong, but i can't be assed googling) that staph infections contain bacteria. I've had a few swabs taken and sent off for testing, which came back with a result of "no bacteria found"

After telling him that this is ruining my life (seriously, i'm emotionally screwed up with a screwy head) he starts blabbing on about how all through uni he had hives, but he's clear now. How does this relate to me? you had hives? rightio... You don't have these monsters covering ALL of your body, you're not in agony most days, you don't have something that can hold you back from getting out of bed, because it's too painful.

When he was done blabbing on about all of that, he had me practically strip down so he could see it all. That was embarrassing as hell. Let's go back to my screwy head... I fear intimacy, I fear having to strip down and be exposed for someone to look at my body. It's hard enough getting involved with someone sexually with the lights turned off, let alone stripping down infront of an asshat doctor. Regardless, I did it. I hated every second of it, and I was bawling my eyes out, becuase I'm so ashamed of my body. I know it's not my fault that I look like this, but I can't help it. Screwy head! 

He still stuck to his so called professional opinion that it's not HS. i personally feel he needs to go back to university, or actually look into the freaking disease, but whatever! told me to use combine dressing and phisohex to bathe in which doesnt freaking work and to make an appointment to go back in two weeks. I opted not to go back, becuase there was no point, he's clearly set in his ways, i'm better off doctor shopping and find one that actually has a freaking clue.

can't remember if I bitched about it before, but I was actually given the referral to see this asshat doctor to have the lesion (boobie monster #1) incised, drained, cleaned & packed with gauze. By the time I actually got to see the asshat doctor, the lesion had kind of healed. The time of receiving the referral it was a huge open hole, the time of seeing the asshat doctor it had healed, but had just filled up and started draining slowly again. Basically, it was just a huge waste of time, resulting in me going home to bawl my eyes out yet again, and getting drunk for the first time in years.

I was livid by the time I got home, the first thing I did was crawl into bed and just cry. I cried my heart out for about 30-45 minutes. I had a couple glasses of vodka to take the edge off and calm me down, which ended up turning into half-3/4 of the bottle!

Skin robot Specialist

I saw a robotic doctor a few weeks ago. I got the referral for this woman the same time that I got the referral for the general asshat surgeon. I had a friend take me to the appointment, and come in with me, as I was advised by the doctor referring me to this woman, that she was very.. blunt? that was an understatement. She was a freaking robot! Even my friend thought so!

We got in the waiting room, and waited for about 20 minutes or so before seeing her. Was literally in this womans office for 5 minutes. Yet another waste of time.

She asked a bunch of questions, and barely gave an opportunity for a response. I mentioned HS to her, and again like the asshat, she turned it down pretty quick. Didn't give an explanation why. She looked at the lesion that has been giving me grief (boobie monster #1) and started writing crap down on one of those labwork sheets, to send me off to have swabs/blood etc taken. All I wanted was a referral to the local hospitals dermatologist clinic, but all I got was another waste of time!

When we got out of there, my friend had no idea what to say, she was stunned at the robot doctor. I don't blame her! I'm glad she came in with me though, this doctor was quite... arrogant, and to relay the experience with others, you would not believe it. But I got a witness! Thankfully this robot doctor was bulk billing, so I didn't waste any money, just time.

Laser Hair Removal!

I had my first round of laser hair removal on the brazillian/buttocks area recently. It's been recommended to help with HS, and lesions and stuff. Wasn't cheap, it set me back $128, but if it helps in any way, then I guess it's money well spent every 6 weeks. It didn't hurt so much, I was expecting it to hurt alot on areas that had scars / flareups etc. The only areas that really hurt, was 10-12 pulses of the laser on the vaginal lips, other than that, it was relatively pain free.

007 :: Return with a vengeance

I have had zero effort this week, barely even in the mood to make a blog entry right now, but I need to. I need to keep blogging for my own personal records. 

Boobie Monster, which I thought was going away, has not. I should have known, I knew it didnt fully drain, it's "that" kind of lesion that, well, wants to take its sweet time, inflict as much agony as it can. 

I noticed it about 36-48 hours ago, it looked like this:

It hurt, it was worse than before, It hurt to wear a bra, it hurt NOT to wear a bra, the only way I could ease the pain was to sit there, with my hand cupping my breast, keeping pressure off it. It was very hot to touch and extremely tender, with the inflammation/cellulitis covering JUST the lesion itself.

I took a couple of panadeine fortes and went to sleep it off. I woke up several times throughout the night, which is uncommon when I take panadeine forte, normally it knocks me out cold. I didn't wake up because I wanted to though, I woke up because during my sleep I kept rolling over onto my stomach causing excruciating pain to wake me up.

Eventually when I did get out of bed, it felt different. I found that during my sleep it had decided to drain a little, end result:

Not the greatest photos, but the freaking lesion drained whilst I was sleeping. I don't think it's over yet though, I think this lesion is going to take me for atleast another ride. It's been what, 3 weeks so far? ugh.

After all of that, THIS is what it looks like now:

EXACTLY like I said to the psychologist lady. I told her about this lesion when it started about 2-3 weeks ago. I told her that have a feeling this lesion is going to be one of "those" lesions that turns into a massive hole missing from the skin, and scars as such. 

The cellulitis has come back, so not sure what to do about that, it seems the first round of anti biotics did not do a great deal. 

I'm at my wits end with HS. I don't know what to do. I was going to go to hospital on Monday, if it was still like the first photo, but now I'm not sure seeing as it's decided to pop AGAIN, for the SECOND freaking time. Is it time to go to hospital? or should I just leave it be. 

What I do know for sure, is I'm going to grab all of these photos and edit them with the date they were taken, etc. I'm going to keep a physical "photo album". Something I can keep in a handbag or something, that way the next time somebody in an appointment - be it a doctor, employment provider, centrelink, etc asks me about HS, I can just whack it out and show them. None of them seem to understand, nor really care. Their skin compared to mine is perfect.

That really angers me. When people bitch and moan about having a pimple. Oh, so you have a pimple? BIG FREAKING DEAL, I have HS. I would MUCH rather have pimples than HS. Infact as I say to everyone who knows about my HS, I'd much rather have freaking aids.

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.

001 :: Introduction to a vent blog!

What better place to vent on the internet, than my very own anonymous blog.

I'm a 23 year old female, who has been suffering at Hidradenitis Suppurativa's merciless claws since I was 15/16. But it doesn't stop there. Lets throw Poly Cystic Ovarian Syndrome (diagnosed) and potentially even Endometriosis (not diagnosed) in the mix.

My life, is not that of a normal persons. As many others with HS would know, most days involve tender-to-touch lumps and bumps, some of which fill with a mixture of pus and blood. These "monsters" as I've grown to name them are scattered across my body, affecting various areas that include but not limited to:

- Arm pits

- Just below the arm pits

- Under the breasts and around the nipples

- Top of the pubic area, meeting the bottom of the stomach area

- Butt cheeks, and the bottom of the butt cheeks.

- Inner thighs

- Bikini line

These are of course not the only areas that HS can affect, these are simply the areas that I am affected *so far*. There seems to be no where this disease won't go. I've once had a monster on the back of my knee, thankfully only the one time. And I've also conversed with a young girl who has HS monsters covering the back of her neck. 

In a way, I am grateful that my HS has not progressed that far, but just knowing the fact that some people are affected on their necks and faces is horrifyingly scary. It's horrible enough having it in the current places it is in, which thankfully can be covered up, without having to worry about it spreading to places in which are not so easy to cover up.

Let's go back a few years. 

I was roughly 15-16 when I first noticed the lesions on my body, I had no idea what they were, it was only a few under my arm pits at that time, and I assumed it wasn't anything major (how wrong I was, hah) I thought it was just a rash, or a reaction to something. So I left it be. 

I can't remember exactly when it got worse, but I can remember the first time I ever went to see a doctor to get help. It was in 2008. I was 19 years old, and I had a lesion on my right inner thigh that was making it very difficult for me to walk. I had rung my best friend up to take me to a doctor, so we went and saw her doctor. He had no idea what it was (No doctor seems to, apparently). He said the lesion was too big for him to drain, so he had written me a letter to go to hospital to have surgery to drain it, and IV anti biotics.
So off to the hospital I went, with the referral from the GP I had just seen. I was in agony, it hurt to walk, it hurt to sit, it hurt to sit. No matter what I did, it was painful. After waiting and waiting, I finally got in to see the Doctor at the hospital. I presented my letter, and after a quick 10 minute visit, which including revealing my inner thigh for the doctor to gawk at, I was sent home with a prescription for anti biotic tablets, and the doctor's diagnosis was "cellulitis"  

I had a freaking letter, from a freaking doctor, who made it very freaking clear, in said freaking letter, that surgery and IV anti biotics was in order. I was in freaking pain. But no, this asshat at the hospital sent me home, no surgery, no IV anti biotics, just a prescription for anti biotic tablets. This, is the night where any faith I had for doctors, went out the window. I gave up on doctors, this night. I very rarely saw doctors from this night on wards, as I felt let down by the medical profession. I felt like I was just another signature on a piece of paper for a medicare billing... Just another number on a paycheck to a doctor who couldn't give a stuff.

I've been to the doctors a few times in the last 3-4 months, and have heard back the standard "WASH WITH ANTIBACTERIAL SOAP" and "HERE, TAKE SOME ANTI BIOTICS" also, "HERE IS SOME PANADEINE FORTE" It doesn't work. The anti biotics help only a little bit, but they don't clear up the HS, because it's not an every day infection. It's a for-the-rest-of-your-life infection! And the panadeine forte, oh, don't get me started. It's lost it's effect on me! The pain is STILL there. The panadeine forte does NOTHING for the pain. Special anti bacterial soap, same thing. DOES NOTHING. And the depression? Well, that's still there. 

But there has to be something they can do? Nope. Very little. There is no cure available for this absolute jerk of a disease. Just one day at a time of pain. Today it could be pain in my arm pits, tomorrow it will be in my inner thighs. There is no end to HS. There just seems to be no light at the end of the tunnel. 

That is why I'm here, starting a blog just for myself. I want to make atleast one post a week, hopefully more if I feel up to it. I want to document each and every nasty monster that invades my body. I want to vent, when I'm having a bad day, even if no one is reading this, but just for my own personal need to get it off my chest. For when I can't talk to anyone and need to just cry it out, and stop myself from doing something I'd most likely regret, and for when I want to save particular photos of monsters to a particular day to keep track of my HS.