Could I really be this unlucky?

dibdab

Great to hear that the steroids are doing their stuff- and if you need the sleepers why not- coping strategies are individual.

Enjoy your haircut- it always makes me feel cheerier being pampered- maybe a massage would be nice or a facial?

Sending bucket loads more hugs coming your way.
Deb x

thistlegirl

Today has been tough, I haven't felt this wiped in weeks. it took me hours to get out of bed and I have only just managed to have a bath- and I am a wee bit grumpy too.
I did manage to make a veggie stew (thank god for the slow cooker) but it took me an hour to cut the veggies and my hip joint was agony half way through- it hasn't hurt like that for a long time, I hope it isn't a sign of things to come now my body is empty of abatacept

Debbie- nothing to apologize for you silly lady :roll:

Kentishlady- I have long, naturally brown,very curly hair, it has taken me 30 years to get it to behave I ain't messing with the style! Though the colour has changed frequently over the years, I may make the red a bit more vibrant this time

Sw- I have been drinking more today and I think that is helping. Been filling up a jug with lemon water and keeping it beside me, of course peeing tons too but hey it gets me off the couch.

Dibdab- ohh massage, I like your thinking :P

Feeling better after "talking" to you guys, thanks again

Jenny

DebbieT

(((((Jenny)))))

I think ure entitled to have a wiped out & grumpy day huni. Uve kept positive for so long you've gotta let ureself just sit & chill wen ure body n mind is calling for it!!

I'm having some lazy days this week, I refuse to feel guilty so ud better not

Big, soft hugs.xxxx

frogmorton

Hi Jenny

I too have to apologise for being neglectful of your thread :oops: .

You are doing so well though I am seriously impressed and so so pleased you can see the lumps shrinking.

Sleeplessness is one of the hardest things to cope with I agree and if you felt a wee bit grumpy yesterday I am not at all surprised :? Good healthy veggie stew - yes thank heaven for slow cookers.

I hope the hip is behaving better today?

Take care now

Sending ((())) and strength

Love

Toni xxx

thistlegirl

Thanks frog but no apology needed. :roll:

Yes the hip seems ok now, not sure what it is/was. It was the longest I have stood in a while as I have been couch potato girl a of the time recently. I took some pain killers and rested. The things was the pain, it was right in the joint where bone meets bone. I haven't had it that bad for ages.
All my joints are doing incredibly well for 30+ years of JRA but each xray shows a little but more wear. Trying to stay away from the what ifs but:

High dose of steroids 60mg for 8 weeks at least - I am on Calcichew but will check with GP that it is enough
No treatment for JRA- is the steroid doing everything that the infusion does or just masking things?
When I finish the steroids how long will I be off steroids and not on JRA treatment- I have an appointment with my rhumatologist start of November. My Hematologist was going to talk to her about looking at alternatives but options are restricted as I have worked through the majority.

I slept well last night on a tablet and after a slow start today I was improved. Lets see what tomorrow brings :?

Jenny

stickywicket

thistlegirl wrote:

No treatment for JRA- is the steroid doing everything that the infusion does or just masking things?
When I finish the steroids how long will I be off steroids and not on JRA treatment- I have an appointment with my rhumatologist start of November.

My understanding is that steroids only mask things and don't do the job that the anti-tnfs do. However, my own experience was that the arthritis side of things didn't get any worse while I was off my DMARDS. You have your rheumatology appointment in a few weeks and I think that will be the time and place to wonder about these things as, whatever we say, the rheumatologist might feel differently

phoenixoxo

Hi Jenny,

That's good news about your hip and I hope it's still okay. I find that a spate of activity following a lot of rest can result in a lot of pain, so I try to pace myself even though that's frustrating.

As for the 'what-ifs', it's a good idea to check with your GP about your calcium intake and I hope you'll have an answer shortly. The other questions might have to wait until November, unless you feel it's worth trying to get in touch with your rheumatologist in the meantime, via the secretary or rheumatology nurse, or perhaps via your GP :?:

Best wishes,
Phee

thistlegirl

Thanks guys, as I said I don't allow my head to go there very often but it is good to get your feedback.

I will start another question for docs sheet. I will write them down then try to forget about them until I am with the docs again.

I think I need to reboot operation keep busy again to keep my brain in check. I am waiting on some wool arriving to start a Cardi for my friends wee one for Christmas- NB DO NOT ask a 6 year old girl for input on design unless you are ready for some interesting ideas. Last time she was round it changed from a purple ballet short cardi with red flowers.. ..to one sleeve red, one pink with contrasting flowers and now extra long length so she can have one each of the buttons she found as the 2 on the ballet cardi wasn't enough apparently :roll:
I will try to sort out the pattern tomorrow to see how big I can make it from the amount of wool I am getting then I will sort the flowers- Different coloured sleeves are not happening unless I get very very short on wool

It is tablet night again tonight-last night was rubbish with me seeing every hour at least but as it only alternative nights I could still function for the middle of today after a slow start

(((((Hugs all round you lovely people again)))))

Jenny

destiny0321

((((((((((for you )))))))))))))
sending hugs your way you are doing an amazing job you will have bad days but keep your chin up & keep smiling.
you are an amazing person, glad your dad ok.
thinking of you always. destiny

stickywicket

I hope the sleeping pill helped last night, Jenny, and you didn't end up with lurid dreams of multicoloured cardigans. It could have been worse. My 4 yr old grandson would probably have asked you to knit him an Iron Man outfit

dibdab

Just some more hugs coming your way (((((((((((((( ))))))))))))))).

When my twins (now 28) were small they used to say they needed to have their cuddle box filled- an image I still smile at- so maybe as adults we need to fill our cuddle boxes too!

Hope today is a positive one in your world- be gentle with yourself.

Deb x

ouchpotato

Deb...that is such a lovely image - the cuddle box! I have found though that my cuddle box has got bigger and bigger as I've got older!

jenny, I think you're dealing with this in such an incredible way! This is why they say women are like tea bags...you don't know how strong we are until we're in hot water (or something like that!) I'm not on the forum that often lately, but I think about you often.

x

dreamdaisy

You are on a far bigger rollercoaster than the arthritis version, so yes, you will swoop into the depths and haul yourself back to the heights because that is what you do. Accept the depths when they come, don't fight them because they are there for a reason (although I've never worked out exactly what ) and remember we're here, OK? I don't for one moment pretend to understand what you are going through but I offer whatever support I can. DD

DebbieT

(((((Jenny)))))) xxx

thistlegirl

Well today has been blah. My brain does not seem to want to engage today so I have been dozing and watching rubbish TV.
I did manage to start looking at cardigans online but just chucked them all on my Pinterest board (online pin board that links the images to the websites you found them on-all kept online so saves on downloading images) My brain is not up to sorting out the final pattern yet but tomorrows another day.
I find it so hard when my brain doesn't work- it is the one part of my body that has been reliable and I like using it

Good to hear from you Ouch, I hope your life is nice and boring at the moment? you deserve it- have you managed any writing?

Love the idea of the cuddle box too

Jenny

purpleowl

Hi Jenny, I'm fairly new on the forum and I have just caught up with your thread. I would like to add my best wishes and I really hope you have a better day tomorrow. I'll be thinking of you.
Take care of yourself,

Trish xx

frogmorton

Hi Jenny

I was just popping in to see how you are doing at the moment. and to make sure you know I am still thinking of you.

Well-done for starting to look at cardigans - so you didn't make a decision - you made a start.

Take care love and ((()))

Toni xxx

stickywicket

frogmorton wrote:

Well-done for starting to look at cardigans - so you didn't make a decision - you made a start.

Isn't she great? I shall remember that one. I like it

Annieboo87

Hi jenny,

Im fairly new to this site and have just read through your posts and just wanted to say. Your an amazing strong young woman and to remember this when you are having a bad day. I feel so humbled and in a way like i know you now.

Big hugs sent your way, take care x

phoenixoxo

Hi Jenny,

Sorry yesterday was a bit rubbish. Toni's right, though – you definitely made a start on the cardigan project!

Hope you're feeling a bit better today

Best wishes,
Phee

Toots

Just popping by to give you some hugs Jenny x

I'm glad to see you're keeping busy (although not always of the enjoyable variety!) and that things are moving along.

Re the knitting - are you a member of Ravelry? More than enough there to keep your mind occupied ;-) x

DebbieT

Hi Jenny,

I hope the past couple of days have been easier huni.

I used to knit 25 years ago, then I gave birth & haven't put myself thru it again I made a cardi & a matinee jacket ... Wot a Mum I was at 17!!

I think knitting is an art & I'm not an artist

Big hugs.xxx

Annieboo87

Every credit to you debbie bet v v little 17 year olds could say that now

thistlegirl

Hi guys, still feeling blah, off to the GP in the morning to see if there is anything can be done, or maybe I just had it really good for the first month? I don't know but I don't like it either

Toots, yes to the ravelry, I normally start there but the Artist is me never sticks to a pattern.

Debbie- You do make me laugh. Though from what I have witnessed from my sister there isn't much time for knitting and stuff-sleeping and eating is her challenge at the moment! Wow 17, well done you!

I started knitting about 6 years ago when a friend got pregnant and have found it keeps me sane when I can't get off the couch. So far my hands have behaved themselves mostly, and it lets me feel I am achieving something when my body decides otherwise.

Monday night I ordered some supplies to do some fused glass work at home after being on a course when waiting for diagnosis and they arrived today. It took me forever to get it ordered as my brain was not helping but I now have phase 2 of operation keep busy ready to go. Less brain involved in this than knitting but more risk-my hands looked like I had been fighting with wild cats after the course :roll:

I stayed at my sisters last night which is great for keeping me busy but the baby was not happy so more work than I signed up for shall we say.
But it felt good to be useful, played Lego with my nephew from the couch and even had the baby in a sling for a while- the only place she would settle away from her mum, and so much more comfy for me then holding her in my arms.
I wish I could do more but not at the moment. My Nephew is 3 1/2 years old, he is used to me taking medicine for Arthur and having sore bits so not crawling around with him etc. He saw me taking all my steroids today for the first time and asked about them and I told him they were new medicine from the doctor to help me feel better, he paused looked at me and said "then you will be able to play with me in my rocket(tent) and we will have a big surprise!" Oh, if only I do the painting, reading and sit still games, he has lots of other people for the active stuff!

Think I will try for an early night tonight and see what happens, I made my appointment for 9:20am tomorrow at the doctor- I plead momentary insanity for this as there is no other excuse....of to set lots of alarms on my phone, listen to the relaxation track and no tablet tonight so she can see me in all my glory in the morning.

If anyone see's a brain floating round send it my way please,

Jenny

dibdab

Hi there,

Would gladly share the little brain I have, but lack of sleep leaves it sadly lacking :?

Really hope the gp visit is a productive one for you.

It's great to hear that you had good times with the family- aren't young children refreshing- so simple and direct in their responses- I spent 30 years teaching little people before the RA pushed me into early retirement in March, and I think it's the conversations that I miss most.

Just a few more gentle hugs coming your way ((((((((((((( ))))))))))))))))))).

Deb x