Hi - just a quick one to say hello, not written much for a while. and this partly to report progress made. I have been very busy with both my children being very unwell, My daughter and her Lupus and suspected Hughes having endless seizure type episodes, and severe fatigue, driving her back to bed, and my young son, similar, so all the teaching of them at home, when too ill for school. They both live with a chronic daily migraine, which is so severe in my son at times, he can't even get out of bed. I have to liaise with school daily to dot the various 'i's and keep thing smooth running and uplifted for the family.
Some progress there with more help from the school, and the local GP's and hospital being brilliant. I also had the misfortune to react twice to antibiotics, triggering head to toe psoriarisis and joint swelling.. for treatment for real flu and two chest infections, (yawn and snore) etc. This followed on from my son having flu and a chest infection, after which he went down with a dose of cellulitis. Our local paediatrician is now very up on Hughes and Lupus and bends over backwards to help us. I was also delighted as our much liked GP retired, who I fought for months in my area to be allowed to have...retired having quite obviously tidied up all our notes - which became apparent on my son's latest admission to hospital.. having gone to the surgery to collect paperwork as we dashed off for him to be admitted..I read what had been written by new doctor on the way to hospital.
There was not a single detail missing about Hughes syndrome, Systemic lupus, and my other three conditions - other medical detail regarding other family members added in etc. Compared to how we were standing institutionally wise 6 years ago...this is like being on another planet!
Meanwhile I am on a new treatment called LDN.. this is my own experiment, under a GP in Glasgow, as I am one of the unlucky people not suited to Plaquenil, I had a serious reaction, however it suits my young daughter beautifully. It appears to be suiting me and calming some things down, as being only on aspirin twice a day.. there are no drug implications for myself as there perhaps would be for others.
I am hoping with the spring on the way, that we will all pep up and plan some exciting adventures. I hope everybody is as happy and as well as they can be.
So a big welcome to any new people, and a hello to everybody else.
Mary F x
