H day plus 7 ~ Dare I Hope?

Hubs been through it this last week for sure. The condition over the last week when it was top scale pain and lesions and leaks is now less pain (but still kills) less lesioned skin if that's possible and less leaks over the last two days.

The pain still practically floors hubs. We had a bit of time out down town to see the rally. And although hubs was stoic throughout our sojourn, back home he paid for it. No sleep due to high pain levels again. That takes its toll on any loving soul!

Plus 7 is today. The next self injection. I was very impressed with hubs just actually getting on with it stabbing his thigh just like that! By all accounts that bloody hurt.

I am amazed. I asked hubs what he thought having to self inject. How he felt about it. Hubs just says to me it's gotta be done. Me? I analyse everything. Think too much i guess.

But i will say i think today is better than yesterday. And yesterday better than the day before. Before that though hubs life was pretty shite.

Maybe it's too soon to even think like this but i can't help it cos am always hoping and praying and thinking as i watch my hubs struggle with it all . . But is this step down of HS in recent days remission of the stage hubs has been struggling with this last year or . . . Is the Humira starting to have its wicked way with my hubs immune system?

Under his arms have lost their redness and he can lift them.

Lift them high!

The leaking is less. Not stopped. Just less.

Hubs can lie on his side in bed which means the swellings are a little less and the pain is a little less and the lesions are a little less vicious!

HS is horrible shite. It's a vicious trashy head freken skin condition where sufferers will try anything from skin grafts to smoking pot for relief.

I actually don't care if my hubs relief is from Humira or its naturally backing off so long as he has some peace for himself. Maybe just maybe that long over due time is imminent.

Good night and take care of you.

X

HS stands for Horrible Shite. . Why me? Why now?

We are now 4 days post Humira double loaded injections. And hubs is suffering. Not from the meds. From the HS throwing itself into some kind of mad overdrive cos hubs dared to try and kill it off.

Pain and lesions with more pain and lesions on top and then some. Never seen my hubs so floored. HS is horrible Shite. So the one thing on hubs mind is to ask himself why me and why now? In between the pain and the wounds you would also ask yourself this but there ain't no answers. It just is.

The Day After HUMIRA D DAY. . .

We never expected a miraculous cure!  Never expected things to feel great immediately!  We never expected the emotional fall out between us after the injections!!

The nurse was lovely and great and early for the appointment.  My hubs the perfect student in learning how to stab this injection into his leg for the next 12 weeks at least.  He had to have two; the nurse called it a "loading" dose.  I watched fascinated as eventually once all checks were done and the nurse felt hubs was pretty clear what he was about to do, when hubs placed the injection pen at the 90 degree angle over his thigh, thumb poised... Then he just pushed..... Pop and hiss.  The noise of the needle and medication being dispensed. 

Wow, I was totally shocked and then realised I couldn’t watch again and made for the door to go get tissue in case the injection area should bleed (good excuse I thought).  I was expecting hubs to have completed the second pen push when I came back into the room to witness the next one that I had actually tried to avoid!

What a shock it is to see your loved one receive anything like this.  It was all so civilised yet brutal.  The first one didn’t hurt so much hubs said, but the second one, in the other thigh must of caught a muscle or something because hubs swore when he did that one!!!

And the brutal emotional fall out through the day showed its toll when we picked and pushed each other verbally to the point of an unnecessary argument.  FFS, we are best mates and lovers and hubs and wife.  Both of us drained from the stress and the waiting game we have had to play these last few months.

Leading up to all this, the lesions and lumps have got worse, hubs is feeling the pain of this horrible condition at a level that is flooring him most days.  His stubborn streak and need to work providing him with a headspace that’s all over the place, concentration shot to bits.

Hubs apologising to me for putting ME through it?  Excuse me, but who is the sufferer here hubs – YOU!  So don’t say sorry to me, am here for you I say!

So, we aint expecting miracles.  Especially when a boil burst today (the day after the injection).  How can you expect much more than what you are currently experiencing.  You can’t imagine another zone yet.  You can only wait, watch and see.

Later we are going to take pictures.  We want to record what the skin is like now and hope that in a couple of weeks, we will see a big difference.  By that time it will be 2 weeks after D DAY.

Today, hubs is still floored.  Pain killers really don’t work. 

Yesterday there were lots of tears, lots of why me’s and lots of FFSs. 

Today there is acceptance of the now. 

SKIN - Synonyms: noun. hide - rind - leather - peel - shell - pelt - husk - fell. Verb. flay - peel - strip - shell - bark

What do ya do when ya see a spot?   Or inflammation from a bikini wax?  Or a razor rash?  Or just a rash?  Stick a bit of cream on it?  Stick a plaster on it?  How big a plaster do you think you would need to cover your arm pits and your private bits?  Would you wear one for years and years?  Would you tell anyone????

If it was infected cos you picked a bit....    Would you see the doctor?...... “Excuse me doc I couldn’t help it but I picked this spot and now it's pretty damn sore so can you fix it Dr Bob?” 

If you had a mole that went manky (northern phrase) would you see a doctor?  Of course you would but seeing a doctor about a boil on your ass or in your arm pit is not top of the day's agenda is it?

Your skin is one of your most important organs.  Imagine when it's not worked like you expected....  Imagine if you found a problem where you least expected in a part of your body where you least want it.... Would you tell someone?  Would you tell the doctor?

We are all warned about skin cancer which is completely right because I am one of those molely people that needs to stay on guard being a bit gingery and porcelain skinned!!!  But alot of people think skin cancer wouldn’t happen because we are not exactly a tropical country.    “Malignant melanoma is the 5th most common cancer in the UK (2010), accounting for 4% of all new cases. Malignant melanoma is the 6th most common cancer among men in the UK, accounting for 4% of all new cases of cancer in males. It is also the 6th most common cancer among women in the UK, responsible for 4% of all new cases of cancer in females.  In 2010, there were 12,818 new cases of malignant melanoma in the UK (Table 1.1): 6,201 (48%) in men and 6,617 (52%) in women, giving a male: female ratio of around 10:11.1-4 The crude incidence rate shows that there are around 20 new malignant melanoma cases for every 100,000 males in the UK and around 21 for every 100,000 females.”  (Source http://info.cancerresearchuk.org/cancerstats/types/skin/incidence/uk-skin-cancer-incidence-statistics).  We are getting better ish... at telling a doc we have a problem Bat Man!

But does anyone warn the general population about other skin conditions that are so serious but not morbid you need immediate medical intervention?  I am not talking eczema or psoriasis or anything like it (I am an eczema sufferer).  I am talking about skin conditions that are beating the medical establishment at their game.  Stuff they aint figured out yet.  I know there is lots of horrible things out there so my gain here is purely biased because I want a cure for this horrendous cruel condition.  Unless you have the net and the time to research it's unlikely you would have an immediate diagnosis.  This condition is not diagnosed by bloods or other body samples.  It's viewed... By a doctor... When you go see him or her!!!

I implore you to see a doctor if you find ANYTHING wrong with your skin.  See it as an investment in your future health... See it as an investment in your future emotional well being. 

Having bad skin on your face is enough to send any human into a bit of a daily melt down if you cannot control it. 

Having skin that leaks and ruptures in parts of your body you want your partner to stroke and kiss and love is enough to send ya just a bit crazy that you got so friggin unlucky to have the condition in the first place. 

The condition is Hidradenitis Suppurativa and is a skin disease that most commonly affects areas bearing apocrine sweat glands or sebaceous glands, such as the underarms, breasts, inner thighs, groin and buttocks.  See your doctor and stop messing around with time.

Now for your information should you still not be asleep.......

The human skin is the outer covering of the body. In humans, it is the largest organ of the integumentary system. The skin has multiple layers of ectodermal tissue and guards the underlying muscles, bones, ligaments and internal organs.  Human skin is similar to that of most other mammals, except that it is not protected by a pelt. Though nearly all human skin is covered with hair follicles, it appears hairless. There are two general types of skin, hairy and glabrous skin.  The adjective cutaneous literally means "of the skin" (from Latin cutis, skin).  Because it interfaces with the environment, skin plays a key role in protecting the body against pathogens and excessive water loss.   Its other functions are insulation, temperature regulation, sensation, synthesis of vitamin D, and the protection of vitamin B folates. Severely damaged skin will try to heal by forming scar tissue. This is often discoloured and depigmented.  In humans, skin pigmentation varies among populations, and skin type can range from dry to oily. Such skin variety provides a rich and diverse habitat for bacteria which number roughly at 1000 species from 19 phyla.   (Source http://en.wikipedia.org/wiki/Skin)

SUNDAY TXT

Sunday about 5.34am "GMG love you xxx"

Sunday about 7.45 am "GMH love you more Alsx xxx hows u? x"

We didn't wake up too well.  I was a complete loon about 2 months about two months ago and broke my ankle.  NOT drunkenly so! I wish.  Simply stepped out the work van and caught it on the kerb and bam.  Plaster cast for six weeks.  It didn't bloody help!!! lol.  My man, running round after me when he is already at about 90 with the pain and the lesions but too stubborn and to loving me to not.

Sunday about 9.45 am "Wake up, made you milky coffee... xxx Alsx"

First conversation is how did we sleep. Hubs knows I was well uncomfortable cos I cant put the ankle anywhere even though the cast is off it still kills.  Likely cos I don't actually stop to rest it but you know what it's like with work.  You just do it.

Well, hubs has had a night with phone games so he doesn't put the telly on to wake me.  Apparently, I said OH MY GOD in the night but then snuggled back down.

Pain meds are crap.  Unless you have something like morphine type meds or cannabis not much else works.  Hubs dont wanna do it.  Why should he? HS is shit.

Sunday about 12.15 pm and hubs gone into work to sort out machinery. Yeah it's Sunday but we are self employed.  "On way to tesco, want anything my darling?xxx"

Sunday about 12.25 pm "Aw fanx gorgeous but am cool Alsx xxx"

Sunday about 13.24pm "Got some cool stuff xxx".  Oh my, he's been gone an hour or so.  It's all very local.  Means he is struggling to walk.

Sunday about 13.29pm "You are cool stuff sweet cheeks Alsx xxx"

We got buffet!!!  It's what we like, when we cant be arsed to cook.  Tescos finest range fairly good.  Yesterday I made avocado and bacon with spring onions, fresh bread and cesar salad.  Take ten minutes on me crap ankle.

Today we want it again less the A & B!  Stubborn hubs puts it together.  Gorgeous plate of food to put any event to shame.  We have had a lazy day.  Hubs been into work twice to change machines regardless of the pain and swellings he has found over the last few days and refuses to let me do anything.  When he finished he had a VRB.  Why not?  Really, WTFN?  I joined him later and it's been chilled.

Yesterday we got over the service with the meds of a "nurse within two days" with a YEAH F*CKING RIGHT attitude we are building knowing it will be now Wednesday next week before he can touch the new meds.

I didn't tell you about Friday.  End of a BIG day.  I wanted to take up a minor invite for tea time drinks but I knew hubs would be in extreme pain and uncomfortable.  But we need people.  We need normality.  We eventually went after a long stupid "I don't want you in pain and uncomfortable so lets go home" and "but you wanna go".  Fairly more said, we went, it was ok, hubs said so but he has well paid for it.

Back to Sunday.

15.45pm " Love you horny xxx"

You got text is the conversation across the settees!!! Why?  Because my phone wont bloody well sound on receiving a text so my hubs is reduced to telling me he did!!!! LOL

"Thank you for my lovely txt!! Food was amazeballs!! Thank you!! Fancy strwbs & crm?"

"Fancy somthing! xx!"

Everything and everyone has a place in life.  It doesn't mean it's right.  Or wrong.  Just is.

Tomorrow is another day.  One we already know is going to be hard.

Life goes on.......... on.......on.......o...n..... and ITS SUNDAY

x

W T F

I just think when you get told one thing, that one thing should happen.  NOT, its not happening (unless a tornado is involved).  NOT, um, er, did you not understand the one thing I may have told you ACTUALLY could be something I DID NOT EXPLAIN right!!!  Not, I was expecting you to deal with me the way you said you would, but then hey?? You didn't!!

I think when you get so far down a road you become fairly blinkered.  It can go one way or another.  You either: -
1. Expect to be let down cos you always do get let down so grumble grumble grumble.
2. You expect exactly what you were told would happen (it doesn't so where does the emotional explosion go??).

Yesterday D DAY was brilliant.  Today, D DAY is a bit like Z day but with complete and utter friggin oh bloody-hell-ness.  The nurse DID not call.  The nurse got CHASED.  The nurse should call ISH within two days of D DAY, but it may well be Monday.

So me...... HS wife, I want the nurse to stab my hubs with the meds and get the F on with it.  I guess hubs does too......... 

But it's been a W T F day.  Forget D DAY.  It's WTF day. 

Hubs been a tad itchy on the sarcastic side and HS wife is a tad "whatever".  I should explain something.  I swear by evening primrose and for one reason or another I been off them for a couple of weeks after years of taking it.  I know it makes a difference.  So D DAY (yesterday) I started them again.  But I know I should of not had a break.  Saying that.... hubs is a tad done in with the pain, and the lesions and the pain and the gawd damn friggin pain and it shows in his day and the evening primrose should be on tap!!!

This week, he went home from work to "rest".... Yeah right, a bit of hoovering here and a bit of cleaning there cos hubs cant rest.  Oh boy did that kill him!!!!   Moaned groaned, hated being home, hated "giving in".  HS wife is being the wife she should be and thinking cant let hubs give in no matter what....

SO today.... Hubs says wanna go home to bed.....  HS wife says, no no keep me company at work (we work together --- self employed).   Oh boy did I get that wrong when I said to hubs, hey you said you didn't wanna give in so I said stay with me.... Turned that round to "oh so it's not my company you want" to HS wife's chagrin...... and THAT pretty much sums up the W T F day.

I love being with my hubs.  I love working with him, chilling with him, loving him.  I want him forever in any shape and in any shape I will love him forever.

I don't wanna see many more W T F days.  I always know they will be there in the future cos they have been there in the past in abundance.  We will deal with it.  We will be here.  Same WTF but different day. 

So enjoy your WTF days...  Learn from it, have a beer or a voddie and start again tomorrow.

xxx

BTW.... hubs wants you to know, we are sorted... we are chilling...(but reading it back to him he's like oh you just want "them" to know (bloody bugger)).   Couple of voddies and red bull and voddies and tango and a bit of a chat, a bit of a laugh, bit of food......  Tomorrow is another day.

xxx

D DAY is Humira Day - looking to the future, here is the past

Hi.  I am Ali.  A fairly normal British housewife, ma and joint business woman.  I am happily married forever.  My man has suffered though.  He has a shit condition called Hidradenitis Suppurativa.  Look it up on wiki or use this link http://en.wikipedia.org/wiki/Hidradenitis_suppurativa, it will tell you what you need to know.  I won’t be posting horrible pictures.  I won’t be posting medical journals.  I'm using this to let off a bit of steam, to tell our story.  I welcome comments good or bad, but please don’t troll me.

Yes it's D Day! Why?  Well today is the day I hope we look forward to kicking this condition in the butt, excuse the pun (which you will get when you read up on this horrible disease)!

Today, finally, my hubs gets the meds that may just put it into remission.  It may give him TB too, but bearing in mind the pain, the lesions, the pus, the scars, and double that again, it’s a chance we are willing to take.

History.  2007, I met hubs.  He had HS but didn’t know it because it was embarrassing where it hits the body and didn’t have a name but it did have a stage and that was around 1/2.

2008, Stage 3 - Hubs finally sees the doc.  Given anti biotics that bugger up the liver, but hey! And they name it but I already had it nailed because I read probably far too much.

2008/2010 It backs up to stage 1/2.  Only needing the original anti biotics.

2011 todate, Shot through from stage 1ish to severe stage 3.  No anti biotics cover it.  No pain killers help.  Severe lesions.  Severe depression and emotional turmoil.  Remember, this isn’t happening to me.  This is my hubs.  My big man who never missed a day’s work in his life, floored by this horrible unforgiving condition for which hardly any research is available and hardly any treatment tested.

Back to D Day.  It's taken 7 months to get this.  It's called Humira and the results look good.  It's taken numerous visits to the doc, a few to the specialist and a long time in-between full of pain and emotional fall out for us both.

My hubs, strong northern bloke that he is, reduced to tears by the levels of pain only morphine could take away along with his daily awareness and sleep necessary should he agree to take it.  My hubs, reduced to staying home because the condition means his skins leaks and ruins clothes.  My hubs, reduced to apologising to me for being ill and putting me through "it"!!! Who is this happening to I ask???  My job is to watch it happen and be there if I can.  That’s not always easy on the emotional psyche.  Watching someone you love in terrible pain, emotionally drained and feeling very shit on a moment by moment basis.

It's been a long time coming for us.  But there are others out there, had the condition 20 years plus with not much by way of medical intervention.  Left to get on with it.  Live a life less half.

D Day.  The meds got delivered today.  Hubs in a home care programme.  Exciting Stuff.

But it's taken its toll.  Me, strong northern bird, trying to be strong, trying not to bite, trying to just get the day done.  It's bloody hard.  We don’t fight.  We lose it over something said.  Something not worth a knat but it’s a blow hole moment we always regret.
I wish I had done this sooner. A blog!!  I wish I had had an outlet years ago to write it out, let it out.  But it’s only recently my hubs has come to terms with the condition and even joined a FB group to have a rant on.  And that’s exactly what it does, gives you a ranting post moment.  Doesn’t treat the condition, just treats the mind to an emotional outlet you can write on.  It’s brilliant.  So for me, I couldn’t write anything anywhere before then.  I could read as much as I wanted but until my hubs was ready to hear it, it stayed in my head.  When he was ready, I was careful what I told him or showed him.  No point scaring someone and worrying themselves silly when it may not happen.  Yes, it’s happened.  Stage frigging 3 and serious too.  But, I’m glad I didn’t tell him everything I had going on in my head after reading everything there was to read and digested it for a couple of years.  At least I knew what to expect.  Maybe it’s helped me, knowing what I learnt, to deal with it better as my hubs began to come to terms with it himself.  I know what he’s going through regarding pain.  I know emotionally what this is doing to him regarding work.  I know how this is effecting his own self regarding his body image.  All these things effect everyone in different ways, but the bottom line is being seriously ill with a body damaging condition is shit.

SO THIS IS D DAY!  Tomorrow, we hope to hear from the nurse on training to have the Humira injection.  The stuff I read on it shows good signs but there is not a lot available to read or I would of by now.

The reason for the blog??? If anyone is going through Hidradenitis Suppurativa as a sufferer or an emotional support, you are in the right place.