FACEBOOK - Do or Die

Friday (day before yesterday) ..... Hubs posts on his own wall in FB .......   "Friends, have heard the gossip. This is how it is. I have a condition called Hidradenitis Suppurativa, google it if you like. This is we have not been been around. I am now regerstered disabled and sometimes have to walk with a stick. Its hard for me to go from being "normal" to the way this condition affects Ali, myself, family and friends that knowabout this. In advance friends thank you for your understanding, We will be out and about soon, PHEW -))"

B response:- Does the condition stop you from buying the beer when you get up here
Hubs response:- about as much as it stops you mate lol
B response:- Ffs its gonna be a sober night then lol joking aside .............

SEE........... we are normal!  Hubs is NORMAL!  I am NORMAL.

What is it about FB that allows you to bare all and its great!!!  I OFFICIALLY love face book today.

Today:  Hubs says on his own wall "Well would you believe it, Thank you for the response to my last post. This condition is more common than people think. In fact 2 people are now going to the doctor with the right information as a result of my post.
In myself i feel like a huge weight has been lifted off me and can start again, stick and all lol. thank you everyone -)))"  ..............How many "likes"???????

Can you believe those two people where so local to us that we have had drinks together or at a do or whatever!!!

HS is global and local but it isn't so bloody VOCAL is it?????

Because people who suffer are crippled by embarrassment for the most.  Crippled by pain.  Crippled by some form of shitty inner crazyness this condition causes because they feel so alone.

My response to original FB post hubs did on a closed site "Let me tell you all something. When this happened last night. The tears where from relief. The emotional down was completely necessary. The "out" had been thought about for a good old long time. The discussions made over a few drinkies, in the car, at work.... It was do or die!!! Tell me, why the hell should anyone hide from such a terrible condition? This is the 21st century and as a people we accept so much more awfulness and horribleness in life and around us with what we see in the news etc we are kind of immune to it all. HS is in the 21st century. If I have learnt anything from being part of this group its a realisation that we are not alone and we as a team and individuals are accepted with no lies, no messing and no limitations to our thoughts and fears."

Had quite a few likes so far and a few comments.

AND this particular comment which I for one believe sums everything up.... "And if they are true friends it will make no difference apart from the fact that they will be there for you and more understanding when you cant be there xxxxxx"

I have used this blog to do a couple of things.
1. Vent my own feelings and thoughts.
2. Document Humira treatment hubs is receiving.

So here is the documentation of the treatment so far.

Basically hubs needs something else.  Yes the condition has receded a bit.  A BIT.  Not a lot.  A BIT.

The condition itself is still holding his body to ransom.  He needs anti biotics to fight the infections.  We have agreed that hubs will go get them this week.

I am happy he is using the stick.  He bloody needs it.  However, I am not happy with the pain levels he is experiencing.  I am NOT happy HS still is prevalent in his body.

Humira IS helping.  I have researched my shite.  There were two ways it would work.  One was within a couple of weeks.  Well we have seen that but HS has still got a hold on him.  So I guess the other is the other way.  At about 8 weeks.  And we are at 7 weeks 8 injections.  The other way was 8 or 9 weeks later we totally see the difference so that isn't gonna be right now.

There is no doubt HS is one hell of a "mf" (another friends words lol). But.  AND it's a big BUT.  Someone, somewhere, is gonna break the spell.  Yeah I would like to think that a post on Facebook would do it.  I would like to think this blog would do it. 

Well, I'd like to think alot of things but it don't actually matter what I think.

I just know what me and hubs and a few special people think.

Today is another day.

Tomorrow tomorrow
I love ya tomorrow
you're always a day away

Look after you

"Look After You"

If I don't say this now I will surely break
As I'm leaving the one I want to take
Forget the urgency but hurry up and wait
My heart has started to separate

Oh, oh, oh
Oh, oh, oh
Be my baby
Oh, oh, oh
Oh, oh, oh
Oh, oh, oh
Be my baby
I'll look after you

There now, steady love, so few come and don't go
Will you, won't you be the one I'll always know?
When I'm losing my control, the city spins around
You're the only one who knows, you slow it down

Oh, oh, oh
Oh, oh, oh
Be my baby
Oh, oh, oh
Oh, oh, oh
Oh, oh, oh
Be my baby
I'll look after you
And I'll look after you

If ever there was a doubt
My love she leans into me
This most assuredly counts
She says most assuredly

Oh, oh, oh
Oh, oh, oh
Be my baby
I'll look after you
(After you)
Oh, oh, oh
Oh, oh, oh
Be my baby
Oh, oh, oh

It's always have and never hold
You've begun to feel like home
What's mine is yours to leave or take
What's mine is yours to make your own

Oh, oh, oh
Oh, oh, oh
Be my baby
Oh, oh, oh

Oh, oh, oh
Oh, oh, oh
Be my baby
Oh, oh, oh

Oh, oh, oh
Oh, oh, oh
Be my baby
Oh, oh, oh