full steam ahead

lucymum

just had a total sink or swim few days, we were refered to a new team in Newcastle this week and managed to get a last moment appointment. When we got there the staff were so nice and kind. They looked at her history and could see that she had been suffering for a long time, they said there were joints which were in remission at the moment but that had obviously been damaged in the past. This made me so sad and angry that in our last 5 years of fighting and no- one seemed to belive my oor little one was suffering.
All of a sudden the dr. was on the phone and talking about coming in for steriod treatment! Of course i agreed!!! Then she said lovely there is a slot tomorrow Lucy will be taken down to theater in the morning so will need to come onto the ward as soon as you can get her stuff!!! I could not belive it, were they telling me I had a slot for the same day???? YES !!!
I came home packed and returned with Lucy, who yesturday had steriod injected into almost 30 joints!!! She was as brave as she could be, scared but brave!!!!!

She got home last night, and although she feels sore, we were told that in the next few days she should be more flexable!!!She is on steriods for 2 weeks then they want to see us for a chall and asessments with physio. They are so nice and said they Will never let her suffer again. They want to continue the MTX orally for now but will be changing it to injections once they have asessed her!!!
FINALLY AFTER 5 YEARS SOME ONE CARES!!!!

I hope you are all doing well x x x

shannonsmum

Hi Hun,

I am pleased to hear that after 5 years someone is finally stepping up and helping Lucy. It makes me so angry, we had a fight to get the medical people to believe us, we took shannon to A &E and to our dr but no one would commit to anything, they just keep pushing us away then when we did get her seen her body just shut down and she was admitted for treatment, was told it was touch and go for a while and we were almost made to feel guilty for not taking her sooner!! its a joke.

Its tough to see them go through what she had the other day, but hopefully she will be more mobile now so thats a good thing.

I dread every week shannon has the mtx injection as she HATES them and finds it so tough but I will say since she is on them her Arther is much more in control. I hope Lucy is ok, hugs all round.

Take Care
Love
Sam
xx

lucymum wrote:

just had a total sink or swim few days, we were refered to a new team in Newcastle this week and managed to get a last moment appointment. When we got there the staff were so nice and kind. They looked at her history and could see that she had been suffering for a long time, they said there were joints which were in remission at the moment but that had obviously been damaged in the past. This made me so sad and angry that in our last 5 years of fighting and no- one seemed to belive my oor little one was suffering.
All of a sudden the dr. was on the phone and talking about coming in for steriod treatment! Of course i agreed!!! Then she said lovely there is a slot tomorrow Lucy will be taken down to theater in the morning so will need to come onto the ward as soon as you can get her stuff!!! I could not belive it, were they telling me I had a slot for the same day???? YES !!!
I came home packed and returned with Lucy, who yesturday had steriod injected into almost 30 joints!!! She was as brave as she could be, scared but brave!!!!!

She got home last night, and although she feels sore, we were told that in the next few days she should be more flexable!!!She is on steriods for 2 weeks then they want to see us for a chall and asessments with physio. They are so nice and said they Will never let her suffer again. They want to continue the MTX orally for now but will be changing it to injections once they have asessed her!!!
FINALLY AFTER 5 YEARS SOME ONE CARES!!!!

I hope you are all doing well x x x

illihor

Aww this is fantastic news I'm so happy for you. I hope he steroids help her and she finally gets some relief from the pain which will then send your emotions in a totally new direction and you find yourself crying over the simple things in life they haven't been able to fo in months/years. Hugs I'm so happy you have been listened to

michelle