MRI and Lumbar Puncture on World Lupus Day

10 May 2017
Can you believe after a 45 minute MRI brain then a break another 20 minute MRI brain with contrast, then the LP and Dr says I will try not making promises. Difficult when you on cortisone. Really sweet Dr speaks me through the whole process and can't access fluid, but he touched a nerve and I had two shocks down my left leg. He decided we best abort. Now I am lying here and we going for round two in the morning with an Anaesthetist. So local is working off and I am going to take my oxy's and night meds. The only thing each time someone moves near me, sleeping pills or not I am wide awake. Night ops sucks, it's like buzzing bees around one every few hours. But I love the staff at my hospital, from the Cleaning staff to the Nurses and Drs. They make me feel so welcome and special. I might not be in the same ward each time, but they will always pop their heads in for a quick hello, hugs with broad smiles. Not the ideal way to spend World Lupus Day, but the concern and love I received after they heard the LP was not a success, is making me lying here with a big Cheshire Cat Smile. Of course my visit from Roy my husband and my daughter Hannah, who had just finished at hockey match less than 1km away and they drew the match against a school known for having tough girls. Her happy face made my day and that Roy sat with me all day (working of course ) and he got to watch H play hockey as a bonus at 5pm. Missing my son Lance though but he lives in the Southern Suburbs and has started a part time job while studying, so virtual hugs will have to do. Happy family - Happy Mother!!!!
10 MAY WORLD LUPUS DAY
This Silent Disease needs a Voice.
Go online and Educate yourself to understand.

I am HOME

I wanted to say Honey I am home, but seriously, come now!!! I must apologise when the techno Gremlins decided to attack my Blog. I was so …. annoyed rather an appropriate PG word. I left it for days, then months and it became years. I had people check if I had popped my clogs. No I did not die, obviously. I have been through so much, how do I find the way of explaining it all. Small steps my new decision. My eyesight comes and goes, so there will no longer be long tedious ramblings. Short and sweet tidbits. Never mind eyes, my tremors are so bad that my poor computer mouse must think, if it had a brain, this user has serious problems. So the latest. I had a 13 day stint in hospital before Easter, CRP – Inflammation levels decided it needed to misbehave, so had an all mighty Lupus flare. The usual three day intravenous cortisone pulse did not work, when you go in with a reading of (seriously can’t remember, so sedated) and after pulse it goes up to 80 and not down. So my friend cortisone is deserting me. I had a nerve testing done on Friday last week because I can’t feel my toes, had an ingrown toe nail and was none the wiser, it was serious. The surgeon when in my little hospital stint gave me a bit of a banter scolding and said “If you had come a week later, you would have been minus a toe”. Me, of course had to answer and said, “Gee it would have been great if I had some feeling in my toe, but my lupus flare and being a tad worried about my numb toes, saved me from being a toeless wonder”. I had an operation to remove the toenail and infection and I am wearing slip slops, slip slops. My feet never ever, allowed slip slops on my feet. The little thingy that goes between your toe, freaks me out, but no, no other shoe will do because I have to have it bandaged to protect my toe so that I do not hurt it, because I can’t feel it. So I look I like I had a major operation. This better heal, because winter is coming and yes, I do not leave the house often, but damn I hate cold feet. I am booked in for an MRI of the Brain and a Lumbar Puncture tomorrow 10 May 2017. So that my Neurologist can check to see why I am having headaches from hell and blurred eye vision and have any of you ever heard of your eye nerves that tilt to the side, not uncommon at all, it just makes it difficult for Ophthalmologists and Neurologists to obtain accurate pressure readings. Of course mine will be tilted. Now this took me a few hours to type, when words are jumbled and you are no longer seeing straight, that’s when you call it quits.