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.

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