Well, after the 'weekend from hell' not just the night, I have emailed my rheumy telling him how I am and asking him to reply. He will. Always does. So sorry you still have not found relief. Prayers going up that you will soon!
In the morning I will call my GP, same deal. And also try to find somewhere for Neve to go so I can rest...which is the major problem here, I need rest when I flare like this and you just don't get that with a six year old. So there are several families I know at who school who may be prepared to help out plus I will talk to the Principal and the chaplain and see how they can help with that.
The rest I am leaving for God to sort out because I just can't. I spent the afternoon crying in pain and asking "what to do?". Honestly, I have no idea.
Neve is now asleep. I am going to eat and then will hopefully get some sleep through this pain.
So I am taking what action I can and leaving the rest to powers greater than mine.
Love and hugs to you all.
(((((((((((((((cordy))))))))))
Rest is the best solution for now. We both know how hard that is given the situation but grab it when you can. I have had to learn that the laundry can wait the dishes can sit in the sink. When Nathan goes down, I go down. Even if it just to read a book.
Check in when you can. We are all supporting you...even if it is from great distances.
I really hope you get some relief soon. I don't know how I missed your "Hell Night" post, but I just read it. Bless you, my heart goes out to you.
Let us know what those medical geniuses come up with!!
Have you tried a pain management dr? That is who I see for the nerve blocks. I really truly am anti pain med as much as possible since it is the two of us...plus I get hyper to the point of not sleeping for days. Kinda defeats the purpose. Anyway, they could help you manage this until you rheumy has a better solution. Also, have you ever had a TENS unit? I know I am asking you a ton of questions but I want this to be fixed!!
UPDATE:
Cords has asked if I could fill you in on whats happening..
She just dosent have the strength to be repeating at the moment, she is in a bad way.
In Cords words.
Lovely family from the school who know us quite well are taking Neve for the
next two weeks.
Done and if I need more they will do more.
Just that makes me feel so much better.
School principal and chaplain contacted.
Rheumy and GP contacted and going to consult.
Thinking they won't put me in
hospital as I am more comfy at home.
---------------------------
My rheumy has been
emailing me with questions, but I don't have any decisive action from them yet,
I will.
I feel so relieved not
having to worry about my angel. This is a good family. It means I can really
rest and not have to be thinking if she is okay. That is huge.
Such an awful place she
is going too, they have a dog, cows, chickens, motorbikes and a horse. It will
be tough. Lol.
Yes, I am still laughing,
just, but still.
That's all I have to date other than what is above.
Just having her daughter in safe hands will help her greatly.
rest ... peace... and healing to you, Cordelia......Well Neve is on holidays with friends now.
Cordelia is doing it tough at home and sounded like someone does when at the end of their rope.
Bloody miserable.
The docs have upped the pred to 75mg and await to see if that is going to give her some relief.
No doubt there is more happening and I'm sure that if Cords fingers get working you will hear finer details.
I'm just a bloke so forgive the man type rundown.
Hi Cords, Thank God for little mercy's, I am so glad you have finally got some help, now you need a carer, lobby your local member when you are strong enough, you may be able to get help through blue care, or the church, try anyone you can think of, the local govt have a carer system , people like us qualify for 1.5 hours a fortnight, every little bit helps, I get them to do my big jobs, the floors, toilets, shower etc, you would get more time thru being on your own. Best of luck, hope your party went well and hope you are on the up soon. I reckon the Orencia has blown you out, I hope your'e rheumy can think of something else. Love Janie.XX
OOps, before I get my jewels knocked out.
A carer was mentioned and she has a friend that is looking into what can be done.
Cords, get the fingers working, I can't remember everything, I'm a bloke you see.
Stephen you are great!!!!!!! HUgs Janie.XX
Hope you're feeling better soon Cord. Bodak - your jewels knocked out, I needed a chuckle, thanks.
I'm so glad you have friends taking care of Neve .. I hope you get a chance to feel better and very quickly!!