Sixteen weeks on.

!!!Yipeeee !!!! another decent nights sleep again last night, only woke up once between 11.45 and 7.15 am so a good 7 hours sleep, I could get used to this. won't be falling asleep on the sofa today then.

Queen Alexandra Hospital

It does not seem like 16 weeks ago that I was taken to the A&E Department at Queen Alexandra hospital at Cosham, Near Portsmouth and kept in. This was on Easter Sunday and is a day I will never forget,  I had been Diagnosed in Dec 2010 with a Cup and Spill stomach after having swallowing problems since the November, and after having an Endoscopy in the Dec, and was put on a course of Medication "Omoprazole" which although,helped did not make a lot of difference. I had a Barium Swallow on the 31st April which resulted in a exchange of views between the Hospital and the GP.

Southampton General Hospital

On the Tuesday I was visited by the Neurologist who said that he needed to do a couple of tests one being a EMG which he could do at QA and a Muscle Biopsy which he wanted to do at Southampton. At this point I had lost a lot of weight going from 13 stone to 8.5 stone and could not swallow solid foods so was not eating, I was put onto a 10 hour feed every day via a Gastro Nasal Tube.

I had the EMG Test on the wednesday and on Friday 29th April at 3.00 am I was transfered to the Henry Graveson Unit at Southampton General Hospital.

I was at Southampton General until the 13th May when I was transferred back to QA. While at Southampton I went through a series of Tests and Scans Including Ultra Sound , CT Scans, MRI Scans, Deep Body Scans, Pulmory tests,  Heart Echo Scans, blood tests, X-Rays and also the muscle Biopsy, I was diagnosed  at the end as having Dermatomyositis. I was still on the 10 hour Gastro Nasal tube, for feeding.

I was back at QA until the 23rd May when I was sent home under a re-enablement care plan. and the Gastro Nasal tube was removed and I was on a puree diet.

I have progressed a lot since the initial diagnosis, although still on a puree diet, swallowing is improving very slightly, My weight is now up to 10 Stone, and they are sorting the medication, at the moment I am on 30 mg Prednisolone  daily plus 30 mg Methotrexate on a Friday, along with daily doses of Vitamin B Compound. Thiamin, Calci Chew, and a weekly Folic Acid tablet. I still have trouble walking any distance or for any length of time so still need wheelchair when I go out, and also still cannot raise arms much above the shoulder, but I can manage most things myself given time and patience (although still need a daily carer to come in) so all in all things are changing for the better. I am back to see the consultant tomorrow so hopefully Prednisolone will be reduced again.

I still have a Dietician, Speech Therapist, Physiotherapist, Neurologist involved in my care and treatment along with my GP and also have a daily care package and weekly visits from the District Nurse team. I have a Hospital Profile bed installed at home.

The Wedding.
I received the first wedding photo of the happy couple today so thought I would include it on todays blog, My Niece Jodie married Dave Yesterday and they are off to Tuscany today on Honeymoon.