sorry not been around in a while. Life took over from the computer!
Well now have official diagnosis....again...of Lupus with overlap rhuematoid and fibromyalgia. maybe even mixed connective tissue.
I am starting on Methotrexate on Sunday Evening...David is away for the weekend so I thought it was probably sensible not to start on something with potentially yukky side effects when home alone wih the kids.
I have some underlying probs that mean I have to have weekly blood tests whilst taking it and living with children who colonise pseudomonas means I also have to be very careful about possible infection but then we are very careful with handwashing and disinfecting anyway because we don;t want to pass that around at the best of times!
the four weeks I have been taking the pred at 20 mg has given me a lot of relief and although still having significant pain I have not felt sick with pain constantly as I was, nor am I passing out...So I am now hoping that reducing the steroids and starting the metho will get similar control and maybe I can refind the parenting skills I seem to have lost.
Meanwhile the chidlren have all had appointments in the last 3 weeks that have unveiled big issues...Jonathan has lost the vision in his left eye from a retinal tear...too late do anything about it...he has severe myopia and the risks for his other eye are huge...jonathan has down Syndrome and is severely impaired cognitively so coping with loss in vision is not going to be easy for him. He lives for his Videos and colouring,
Rosie's epilepsy is really troublesome right now and she has develiopped a reaction to one of her drugs...now waiting for neurologist to get back to us with change plans.
Eve's scoliosis has progressed from 22 degrees to 30 degrees over the summer and she is now facing spinal surgery...not a good prospect as her breathing is impeded by the twist in her thorasic spine and her chest suffered badly from the last aneasthetic.
Joshua's vision has now dropped to a level that registers him officially as partially sighted.....he is a child of normal inteligence in mainstream school and the LEA are being difficult about assessing his needs. He is due to move to secondary school next year... Wish they didn;t have to grow up! So much easier to keep them safe when they are little!
Planning a girlie weekend with Christina and Eve as Rosie is in respite and David has taken Joshua to Thruxton for the TOCA Racing...We have Jonathan too but he is keen to go look round TOys R Us which is what Christina wants to do!!! It is lovely having a little girl who likes to go looking without needing to buy!!!!
Hugs
Well now have official diagnosis....again...of Lupus with overlap rhuematoid and fibromyalgia. maybe even mixed connective tissue.
I am starting on Methotrexate on Sunday Evening...David is away for the weekend so I thought it was probably sensible not to start on something with potentially yukky side effects when home alone wih the kids.
I have some underlying probs that mean I have to have weekly blood tests whilst taking it and living with children who colonise pseudomonas means I also have to be very careful about possible infection but then we are very careful with handwashing and disinfecting anyway because we don;t want to pass that around at the best of times!
the four weeks I have been taking the pred at 20 mg has given me a lot of relief and although still having significant pain I have not felt sick with pain constantly as I was, nor am I passing out...So I am now hoping that reducing the steroids and starting the metho will get similar control and maybe I can refind the parenting skills I seem to have lost.
Meanwhile the chidlren have all had appointments in the last 3 weeks that have unveiled big issues...Jonathan has lost the vision in his left eye from a retinal tear...too late do anything about it...he has severe myopia and the risks for his other eye are huge...jonathan has down Syndrome and is severely impaired cognitively so coping with loss in vision is not going to be easy for him. He lives for his Videos and colouring,
Rosie's epilepsy is really troublesome right now and she has develiopped a reaction to one of her drugs...now waiting for neurologist to get back to us with change plans.
Eve's scoliosis has progressed from 22 degrees to 30 degrees over the summer and she is now facing spinal surgery...not a good prospect as her breathing is impeded by the twist in her thorasic spine and her chest suffered badly from the last aneasthetic.
Joshua's vision has now dropped to a level that registers him officially as partially sighted.....he is a child of normal inteligence in mainstream school and the LEA are being difficult about assessing his needs. He is due to move to secondary school next year... Wish they didn;t have to grow up! So much easier to keep them safe when they are little!
Planning a girlie weekend with Christina and Eve as Rosie is in respite and David has taken Joshua to Thruxton for the TOCA Racing...We have Jonathan too but he is keen to go look round TOys R Us which is what Christina wants to do!!! It is lovely having a little girl who likes to go looking without needing to buy!!!!
Hugs
