Going on biologics

[Someonesmother]

Welllllllll, after a few weeks of silliness on my body's part, I had a call from the registrar who told me a decision has been made to put me on a biologic. won't know which one until I have had all the blood tests and see them at the clinic in Jan/Feb. Until then my friend Prednisilone will keep me company. So I will struggle on in my fatigue and pain until then. At least I get a week off over Christmas to put my feet up and do nothing! Yay

[Hidden]

I think this sounds like really good news! Hopefully you won't have same tolerance issues with Biologics as you've had with the DMARDs to date and at least you don't have to fear trying anything else over Xmas. Hopefully the Pred will hold off of the worst of the pain - it's great that you can tolerate this drug - it makes me bipolar! Txx

PS love the image!

[Someonesmother in reply to Hidden]

Hahah that woman looks like I feel except I feel like that before I start the day! I have no idea how I will go. I have intolerance to antibiotics that most people can pop no problems so I always approach anything new with caution. Sometimes it takes a few doses before my body decides Nope that's it! I have to have one specific brand of pred any others have a terrible impact on my brain and body. One had such a bad affect I ended up having a car accident and I wouldn 't take it for ages after that. I am just hoping it kicks in soon to stop the chest pain. It is Wednesday and I have struggled through the day thinking Oh god two days to go this week. hahahaha Ah well only 2 1/2 days next week and I can take a rest.

[nomoreheels]

Great news! I really hope that whatever is decided on works for you & your steroids keep you upright in the meantime.

I look like the pic except I'm in jeans & got my feet up, oh & on my tablet lol!!! Nothing like the pic really then!

[Someonesmother in reply to nomoreheels]

I am hoping it works and not too much reaction to whatever it is either. hahah it was more the feeling in the picture I was going for.

[nomoreheels in reply to Someonesmother]

I feel like she looks too, my point really but waffled on & lost it's meaning but seem to be being misunderstood, just that way out tonight sorry. Not in the right frame of mind.

[Someonesmother in reply to nomoreheels]

hahah don't be sorry, my mind is feeling a lot like that lately. Very hard at work when your brain is mush from exhaustion. I so know what you mean.

Hope you get some rest and can start to feel a bit better soon

[nomoreheels in reply to Someonesmother]

Thank you so much for your kindness someonesmother. Bit teary, not taking much!

[Someonesmother in reply to nomoreheels]

I am so sorry you feel that. Sometimes it just wears you down and a good cry can be just the thing to get it all out. I think we are very entitled to have some down time, we put up with so much and smile to the outside world because they really aren't interested when they ask how we are. Mind you it is a problem if we get too sad for too long and if I ever feel like that I will go and get some help. So far I have managed to keep my chin up and put one foot in front of the other each day. On the days I can't I go to bed and stay there for the day and pull up my shutters to the world. I hope you can start to feel less pain soon.

[nomoreheels in reply to Someonesmother]

Thanks for that. It's not so much the pain I just feel so wretched & have an assessment I have to be up at 6.30 for & all I'd like to do is as you do & stay in bed, hibernate. Just feeling sorry for myself & so not like me but I'm not good under interrogation type meetings & fear it will be like that. I hate asking for help & that's exactly what I'm doing. Never been a taker, ever. Never mind me, but thanks again. I'm sure it'll be ok, even if if doesn't go in my favour I'll get on with it & carry on.

[Someonesmother in reply to nomoreheels]

I am just like you, I am bloody minded about being independent. I had never taken help, but you know I discovered when I had a child with cancer that sometimes we do need help. Sometimes it is good to have someone who is on our side and advocating for us when we are unwell or if like me so stressed about my child. I would hate to have to go through that interrogation. I guess at some stage in the future I will have to here in Oz as they have changed the system so you have to be almost completely incapacitated and in a nursing home to be eligible for disability pension. You know what you are entitled to assistance, you have paid taxes and worked and now you need a bit of a hand. There is absolutely nothing wrong with that, so don't feel like a bludger or anything else that you may be feeling. everyone at some stage in their life needs a helping hand. I hope it went/goes well and please let us know. We are here to support one another even through the dark times when we are feeling low. Nothing is ever too silly or too bad to talk about, we need to be able to do it so we stay sane in a world full of madness.

[nomoreheels in reply to Someonesmother]

That's such a hard thing to read, I'm so sorry & trust all is now well. I suppose being an only one made me independent but you're right of course, I've paid into the system since the week after I left college so a lot of years!

Thanks for your good wishes & will be on again later to say how it went.

[Someonesmother in reply to nomoreheels]

Oh sorry I didn't want you to feel worse, it was more of a way of explaining that as a proud independent woman I never ask for help either. it is a long story and not for now, but I am sure you get what I mean. It is about putting your hand out tentatively and then accepting that human touch that is returned. People care more than you think and I am sure that there are people ready to also help you. I have read some on here ring an advice line there and get really good advice on how to deal with the assessment process. I so hope it all goes well and remember that you are not a fraud, you are actually ill and they shouldn't dismiss you. Don't be strong for them, tell it like it is and describe in detail how debilitating the disease is. Big gentle hugs and lots of good wishes for a good outcome.

[nomoreheels in reply to Someonesmother]

No, no, feeling a lot more positive this morning, think a bit if quiet wailing alone again tired me out & I read up on scoring last thing before bed which really helped. It was more about your child having cancer. Just have to be me & I'm very sore so won't need to put anything on. Feet very stiff & couldn't get off the loo as knees are my too, or reach for the basin to lever.... oo, probs too much info! but luckily h was in the bedroom waiting to help in the shower so heard me struggling! I'll be fine, just a bigger wobble than I expected yesterday. Thanks again for your kind words. Will you pm later if you have a mo? x

[Someonesmother in reply to nomoreheels]

well I am glad you are feeling better about it. Hey we are all entitled to have a wobble it is well deserved and allowed. I so know what you mean about getting up off the loo. I have the added fun at the moment of the moon boot. The toilets at work are very narrow and I am sure some people wonder what the hell I am doing in my stall when I get up and try not to rip the rather large paper holder off the wall. hahahah

it is about 6.30pm here. Why don't you PM me and if I am still awake I will respond, if not it will be tomorrow morning for me when I do. Happy to chat though.

[nomoreheels in reply to Someonesmother]

Oh, of course your glorious boot!! I can just picture you having to manoeuvre round obstacles with it... those loo roll holders are ridiculously large anyway never mind in a small cubicle ha! Are you going to dec your moon boot for Christmas? Pic please if you do lol!! Will pm you later when the house is quiet.

[Someonesmother in reply to nomoreheels]

I have kicked so many chair legs and tripped on things in the past 11 weeks. Oh well hopefully only a couple more to go in this thing. No I have so much else to do I won't have time to decorate.

[farm123]

I have had fewer issues on biologics than DMARD's and cannot tolerate MTX so fingers crossed (literally not physically) the first one they choose will work for you. Farm

[Someonesmother in reply to farm123]

Thanks Farm. I am hoping the same. and yes figuratively crossing everything. hahahah