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.