Originally Posted by bluestone
Pleased to hear your in good spirits Jay, keep up the good work
So I have just found out that my major pain in the evening is due to not taking enough meds, as I just saw the Dr and he checked my drugs chart and saw I was having 3 doses not 4 as I should of Ben having! So he's now changes it so that I'm not getting in so much pain. Tonight I had to take 'the when needed' drugs as I was so desperate for somerelief. Going to see about having an anti nausea injection tomorrow morning so I don't bring my meds up that I take.
Was pretty ill again this morning from eating before my meds but didn't take them till late as I wasn't well enough and Was really weak and so my body kind of shut down because of it and wasn't aware of anything for an hour or so. But am fully better now
Hopefully I manage to find out what is causing all my sickness soon as its making me very weak after being so now.
I hope I'm not scaring people with this all. As I'm sure I'm a unique case and its not normally this bad.
Diagnosed at 14 in '08 and i have Neurofibromatosis Tpye 1 + Neuromuscular Kyposcoliosis in the Thoraco-lumber region (T-65* L60* if what i interpret is correct).
Had surgery 08/05/14, fused C5-T12! By the wonderful and amazing, Mr Bernard. And then an Anterior Iliac Strut graft in my neck/ chest on the 05/06/14