I haven’t posted anything on here for a while as I’ve been too busy floundering around in a sea of bureaucracy in my efforts to get a temporary vaccine mandate exemption. I explained my situation to my GP by email, i.e. that I had been taking an MS drug which had the effect of lowering my lymphocyte count to levels that would prevent the vaccine from producing any immune response. I explained that I had stopped taking the drug a few weeks earlier and it would take six weeks to clear my system before I could have my first vaccination and that it was recommended that I wait six weeks after that that to have the second.
My GP’s response was as follows:
“We are not involved in the vaccine exemption process but I note that patients on Fingolimod can safely be Covid vaccinated but require a third dose for primary immunisation.”
Clearly he hadn’t read either my email or the medical notes that had been sent to him by my neurologist. Thankfully another doctor at the same practice was able to read and comprehend my situation and I will be forever grateful to her for stepping in and preparing my application for a temporary exemption which was eventually granted. I even got a personally addressed letter from Ashley Bloomfield!
I work for myself so I was never in danger of being mandated out of a job, but for a while there I wasn’t able to the visit places I usually would and I’m glad that situation didn’t last too long in my case. This is the reason why I am against mandates – for the black and white, no-exceptions approach that seems to pervade the officialdom behind this whole Covid system. I feel for people who might not have been fortunate enough to be granted an exemption and found themselves in a situation not of their own choosing that resulted in their losing their jobs because of it. Or for the poor souls who had a bad reaction to the first vaccine but were unable to be exempted from getting a second. I also imagine that there would be a lot of people with auto-immune diseases among the vaccine hesitant who were either forced to get vaccinated or remain unvaccinated.
Anyway, my own story has a happy ending. I had my first Astrazeneca dose a couple of weeks before Christmas and my second at the end of January with no complications or side-effects. The advice is to wait for the full six months before getting a booster but I’m hoping that all this jabbing and mandating will be a thing of the past by then.
Then something happened that put what now seem like petty worries completely in the shade. My darling little six-month-old grand-daughter who had problems since birth and has had to feed through a nasogastric tube ever since, had an operation at Christchurch Hospital which complicated her condition and she had to be airlifted to Starship Hospital where she has been ever since.
Strangely enough on the day she was transferred I too was at Christchurch Hospital having an appointment with my neurologist about starting on a different DMT (disease modifying therapy), Ocrelizumab. After having a really enlightening chat about my condition and possible side effects with my Neurologist, I agreed to go ahead with it and went away feeling a little nervous about having to have the infusion but confident that all would be well.
Knowing that my daughter and granddaughter were in the hospital I went to see them after my appointment. What a very different experience they had been having! I won’t go into any of this here, other than to say I was massively relieved to hear that they were transferring her to Starship Children’s Hospital in Auckland that afternoon.
That was on 18 February and she is still there. When she arrived she was heavily sedated and was on a ventilator. Thankfully my daughter’s father was able to fly up to Auckland to be with them and they have been staying at his sister’s house while this lovely little family have gone through several heart-breaking failed attempts to extubate her and then had to reintubate her again.
A couple of weeks after their arrival my daughter tested positive for Covid – I believe there was an outbreak at Starship at about the time they arrived. This just seemed to be yet another obstacle thrown in their path but there was nothing else she could do but isolate for the required number of days.
Meanwhile I wasn’t feeling very much help at all. I looked after their dog for a couple of days but that wasn’t really a great success as he’s a BIG dog and I’m obviously unable to take him out for any exercise. I would love to have been able to jump on a flight to Auckland but that isn’t a simple matter when you have MS plus I had this infusion coming up. The only thing that I felt I needed to do was to keep busy and keep my mind from going down negative pathways.
Thankfully an opportunity arrived for me to do this. Many years ago (more years than I care to remember) I started making up stories to entertain my son who had a toy polar bear whom he called Baby Julia. A few years later I committed them to paper and set them to verse. “Baby Julia” became Maisey Morley, named after a little white dog my son owned called Maisey and my son’s middle name, Morley which is a family name on his father’s side. My sister, who lives in the UK, is a very good artist and we tend to think alike so I asked her if she’d do some illustrations for me. Probably due to being bored witless with the Covid lockdown, I was thrilled when she said YES. So this is how it came about that the first of these stories has recently been published by Nightingale Books (an imprint of Pegasus Publishing) and is called Maisey Morley’s First Christmas.
Maisey Morley’s website can be found here.
Anyone who has ever written a book will know that a lot of the marketing activity is the responsibility of the author, particularly in these days where a social media presence is so vital. The NZ Society of Authors were looking for promotional videos of authors reading their work at the time, so we decided to use a glove puppet of Maisey and make our own video. Not only is Anne a great illustrator, she is also a good seamstress and video editor! The video which we made for this promotion can be viewed by clicking on the below picture …
And another one below for Pegasus Publishers …
Then on Monday 07 March,I forced myself out of bed at 5:00am and got the shuttle to the hospital for my infusion. This whole procedure went so much better than I imagined. I had even applied (and got) a mask exemption in case I was stuck for the five or six hours feeling unable to breathe and panicky. Nothing could have further from reality. The infusion did make me feel uncontrollably tired but I was able to drive home, after which I slept for a solid nine and half hours!
It is now Wednesday 09 March and my granddaughter has just been successfully extubated and is looking rosy-cheeked and ready for mischief. Her parents are looking so very happy and relieved too. I’m not surprised – I’ve only given a very summarized account here of the horrendous journey they’ve all been through! Although she may not yet be completely out of the woods, an important step along her road to recovery has been taken. I must say that today is a very happy day and one that I will remember forever!
5 thoughts on “Exemptions, Extubations, Advertisements and Infusions”
Great article, Claire, and beautifully written 🙂
I’m so pleased everything’s now going well with your beautiful grandbaby. Give Kate my love for being such a courageous mother for her wee family, it’s not easy xx
Will do xxx
Hi Claire, what a journey you have been on. I hope little Eta is doing well again now!!!!! And I wonder how your Disease Modifying therapy went??? I read this ages ago but really not keeping up any more but have been thinking about you. Love Sue
You’ve been on my mind too – must get together soon!
Many thanks for your post. I hope your granddaughter is doing well still.
I was somewhat taken aback by the Fingolimod medication you are on as it is such a mouthful of a word. I thought I would have a look at its chemistry. I see it is essentially neuro-toxic so question how it can be of any use.
The vaccines, if they contain anything at all, will also be neuro-toxic as I have checked the ingredients as far as possible.
My own body was affected by neuro-toxins via sodium nitrite (E250) in bacon I ate which let to the much more toxic nitro-samines so I suffered the facial palsy I now have on the left side of my face, although it only came after about 8 years of eating the bacon, not realising what I was doing to myself.
It has made me very tired although things are improving as I seek to detox. The wretched NHS misdiagnosed me with a cancer and gave me immuno-therapy which I stopped after 9 sessions once I worked out what was actually wrong with me (no thanks to the doctors). I now suspect the therapy may well have damaged my pituitary gland as there is now an imbalance between the pituitary and the thyroid.