I can't believe it I just did this huge post and it didn't work.
Saw my Specialist today Dr. H-S and had a chest X-ray and sputum test, X-Ray shows no changes since December but sputum test will be back in a few days. I told David I felt unwell - sore, muscles, joints, increased difficulty breathing and stronger feelings of depression.
So my blood work was good, for someone with an autoimmune disease.
I also, asked David about these hard little lumps that have cropped up on my arms, legs, chest and top of my shoulders. I expected him to say they were part of the disease but low and behold, he said they were the beginning of skin cancer. Apparently, being immune compromised brings out these due to our teenage or early 20's times of laying in the sun. So I'm off to the GP to look at either a cream or maybe other treatment. He said not to worry. Easy for him!
I am also going back to the Psychologist as I am trying as hard as I can to fight these feelings of anxiety due to the lack of support from my family.
David has met my mum and he thinks she's great but that was because she spent a lot of time with me during my nine month hospital stay. I did tell David she was a different from the person he had meet and he was astonished that she had not been to visit me in a year. I live in the east suburbs of Brisbane and she lives in the west suburbs.
LilDreamer I asked David about whether he consults with Dr. V and he said they did in my case as Phillip had consulted him whilst I was in hospital as it was a life and death situation. Apparently, David was Dr. V's Regristrar and Phillip is the more senior but their specialties are different. I said I thought he was the Guru of ASS and he said he might be but Phillip was extremely good at his job and if you were to be hospitalised then he may be asked to consult.
He thanked me for saying he was the Guru.
So rested assured you are in great hands. David just told me that you have only been newly diagnosed and unfortunately, with this disease you must be patient.
Now everyone I told my lovely Doc today that we were on RareShare and the acronym we use is ASS, it was hilarious as he laughed and was also horrified at the same time. He can be an extremely serious person and he is also a very intelligent person but his comment was "can't you use a term more dignified, especially due to the severity of the disease" I just laughed and said I think we all see the funny side.
I hope you are all feeling a little better than yesterday.
Lisa