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  

Week five and six stab wounds!

Well, I have not really posted about the Humira. Mainly because hubs has been floored by more infections and more lesions and more pain. Enough to really wonder if anything is working.

But in my hubs words. Overall things are better. Leaking is less but even when it's less it's still getting him down because he still has the lesions draining. You try not to hope too high in case it doesn't work but secretly or sub consciously you hope and expect and you really have to keep on focus that actually, things have improved. Just cos it ain't blasted it out your life don't mean it's not starting to work.

Pain is still pain. Lesions on lesions are the problem and the pains are deeper somehow. To the point the nerves around the lesions are now giving hubs shooting pains for which he had to go to the doctor to get yet more tablets.

Then there are the side effects and the thought that this time of year hubs could catch a cold off a grand kid or a mate and that could floor him because Humira messes with the immune system.

Side effects of the year have to be the nausea and abdominal pains there 247. Waking in the night from the pain only to get the nausea back. Then there is the ear ache.  Then his sinuses are playing up when they shouldn't.

It seems to me that hubs pain is higher than ever. The walking stick is back out again. Hubs feels that's him giving in but the way i see it it's about feeling able to do stuff.  Then the doctor signed him off work so that has messed with his head big time because it's not for a couple of weeks. It's for two MONTHS!  My Big Strong Man that he has always been means he feels totally knocked down.

Then there is the emotional fall out. Although there were no guarantees given, with Humira being a trial for HS, it doesn't stop a person believing that this could be the one thing that turns back the clock. Yeah you try to keep it in your mind it may not work but your mind has other ideas so when hubs experiences all I have written above he feels a huge sense of injustice. The tears have fallen on many occasions this last few weeks. Hubs soul is weaker from the physical battering his body has received and had to consume to only live another day with HS.

Where's my head at in all this you may wonder?

Well. . . . When I see my hubs go through the HS conditions and the side effects of medication and his tears and humility . . .  I could lament my little lot. . . I could moan an awful lot but it's not actually in my nature (hubs star that he is saying Yeah Right O lol). . . I could scream and cry forever . . . But i won't.

So. All my head or my mind can do is crawl up my ass and stay out of my way so that I can be practical, stay strong and keep the faith. It's the least I can do whilst wishing I could do so much more.

Look after you. X

You are beautiful

Could i love you more? Yes. Cos everyday proves that i do.

I knew you had "something" going on when we met. Little did i know what my future hubs and me had in store.

But would i change a thing? Yes. I would wish this shite HS would do one. Yeah there has always been health issues. Always been doctors. Hospital appointments. Ups and downs. But i am there. Ain't my hubs been there for me? This year a bloody broken ankle. That nearly put him over the edge and watching that ain't been bliss. Had cervical cancer 3 years ago. Was he there? Bloody yes he was. Lost a baby. Was he there? Yes is your answer.

My hubs is my rock.  Met him through family. Out in a club. Kinda sliding doors moment. A story we love. But I know what i wanted the moment i saw you my darling hubs. So many aspects of you attracted me.

Your laughter. Your crazy bad jokes i hear over and over again. The same old same old is still new today. The way you can have a dig somehow that actually don't insult anyone cos it's the way you tell em!

Your profile. Your face is amazing. Your body profile is sexy as ever. Don't care about the scars. Don't care what's coming out of you.

Only care you know i love you. Only care you know you are precious. Only care you know you are amazing.

The moment we met we both have said how our lives changed intrinsically. How we meshed. How right we are. Yes we had a life before. Yes we got history. Real life history encompassing kids and grand kids and life and death.

So bloody what. My hubs has HS.

So fuck HS. And. Sorry. But fuck em all. My hubs is my world. My universe. My out of this world.  We are always gonna build on our world. Always gonna move on and hopefully up.

Hubs. Everything. Always.

Alsx xxx

Not as much hell as you are going thru . . .

Hubs says he is putting me through hell. . . But i reckon he has his own style of hell going on and there is not a damn thing i can do about it. Except be there to listen and comfort and maybe comment.

I listen. I hear. Is there a difference? Probably. But i don't just have my ears open. My eyes are often wide open and take it all in and my eyes help me when maybe i just didn't hear it right or listen properly. My eyes tell me when HS is being horrible shite. And i guess my eyes are wide open when i see what hell my hubs happens to be going through at any one moment in the day. I don't always need to hear or listen cos i can see it and YES my eyes have heard it all and still hubs is having the best of hellish times.

I comfort. Do i? Do i really comfort? Defining Comfort. A sense of physical or psychological ease. Is that me? Can i generate that? I think i do in my own way but i can't see how because all i see is hubs internal and external struggle with the HS. Maybe i am hubs comfort zone now. I am the only one close enough to hear and see what hubs goes through each and every day.

I comment. Perhaps not always the comments hubs wants to hear but we are way past ignoring the obvious. Let's just say that as far as HS is concerned i am as well read on the subject anyone can be because that's how i deal with things. For me information is everything. And information is all i got in my back up plan to listen, comfort and comment.

Look after you. X

Ps 2nd week and third Humira injection was Wednesday. But in the last 7 days HS is back with a vengeance after hubs had some respite from bloody high pain and less leaks to right now when the pain killers are not even touching the sides and new lesions have appeared. My comment? It's too early to know if the Humira is going to help and too soon after the combination anti biotics finished to know if they helped either. For hubs though HS and new treatment has dragged his emotional self over the coals and all i can do now is listen and comfort.

Dear Diary

The day before the last injection we let down our best friends again cos hubs so rough from the pain and even though the lesions were draining less they are still open wounds. We are lucky to have such understanding mates who pray for hubs instead of saying yeah. They send us hugs and ask how we doing and they look forward to the evening we will join them again.

The day after the injection hubs was late taking pain killers simply cos he didn't feel in pain. My words are bloody take them please. Just cover all bases! He did. And said he was glad because within the hour of moving around the pain kicked him down again. Hubs asks me to look at the areas because he can feel something "different"! Well i couldn't see anything different. Just the same old reason why my man is in so much pain. Soreness. Redness. Skin splits. Leaking. Swelling. But i also see that it's less. Still a lot. But less!

Even though hubs still mad with pain and exhaustion he takes me to the pub so i can do open mic.  I practised loads 5 new songs to do and we been badgered by the organizer chap to come along but i said to hubs only when you are better. Well. Hubs wasn't better. He was suffering from guilt cos we ain't been anywhere in awhile. We had a good night. Songs did well. I was blazing with the good vibes i got. But oh boy did hubs feel it getting home and the next day.

Next day. Friday. Big day at work. Always is. Short on staff and big pressures. Hubs drives and i supervise and help put things straight. But the day so awful cos hubs hadn't rested the night before so the work day by 3 pm we said enough was enough. Thank god we have help and could call it a day. But no grand daughter tonight as just couldn't cope.

Saturday. Hubs says again he can feel something on one bum cheek, would i just look. Well. Well. HS is a freakin fighter! Another lesion. Round and ripped already. Looks like one ring of skin inside another like a double bubble. I take a picture to go with the others. This one is different. Really different.  It's really deep and i can see hubs is already feeling it along with all the other wounds. You can see why HS is so special at sharing it's nastyness with its sufferers. Feeling a bit out my depth here.

We are both out of our depth. Both pissed off at different levels, all levels, any bloody level because at every turn HS is in our lives. It does feel like HS has a life of its own. Its own need to survive but it's not a specific entity like a tumor or a growth. It doesn't need to grasp onto your insides to live. Its a condition where something in the body is not working right and may never work right again. So you just live with it.

Things had got better lately. Yeah. . . HS bloody well has its claws in my hubs but I believe Humira is trying to kick HS's butt! That's because the last few days have been so up and down its like HS is getting a right warrior kicking but it's kicking right back from the look of things. But we go buy some feel good lamb and have roast lamb sandwiches! Totally lovely and we had a lovely chilled night . . . Ish.

So it's Sunday today. In between the leaking that's started again and the hot flashes and flushes and the pain hubs is holding up. We have been into work and done a collection from a new client. New business is great even on a Sunday. But the new lesion is all ready to leave a scar or maybe erupt. Hubs says that area is a dull throbbing ache! He has been getting nausea and shooting pains and twinges that contracts for weeks. But lately this kind of nerve pain (my opinion of what they appear to be) is taking a big hold over long periods.  So today after the bit of work we go treat ourselves to roast beef for tonight! It's in the oven now! Waiting to be demolished so I hope hubs appetite holds up against the pain he is in right now.

Monday. How weird. My hubs can categorically say things are better but the HS is still being brutal. Shooting pains still giving it large and i think i am beginning to get used to watching hubs jump which is also disconcerting for me. Although i will never get used to seeing him well up with hard emotion when the going gets tough on such a regular basis which is sometimes hourly let alone daily. I will never get used to hubs breaking down just when i think he is calm or comfortable.

Because the bottom line Dear Diary is he ain't calm. He ain't comfortable. It's not just the damn lesions. Or the damn leaking. Or the damn soreness in places no man wants his wife to see and document for future reference. Or even the damn new stuff popping up on him now! Its the damn human style nuclear emotional fallout that can take a person down. Down so deep it's cruel.

So for now
Dearest Dear Diary. I am not comfortable and in hubs own words i am not happy to watch this totally uncompromising uncomfortable (note the sarcastic understatement) heart breaking condition take my hubs down just when we have got so far. I am convinced Humira will kick HS's ass in the long run. We just still got to keep in the running and try to stay above it.

Take care of you cos tomorrow is another day.

X

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.