Many of you probably don't know that I have a neurodegenerative illness that has left me unable to work since May, in constant but invisible pain, and mostly confined to a wheelchair.
On the 24 May 2017 I had 2 blackouts within an hour. The day before I'd had to take off work due to a severe migraine. Michael, my partner was at work, and I of course downplayed what had happened. He convinced me to get an Uber to hospital. I was admitted after 5 hours in the ED with excruciating head pain. Initially doctors thought I'd suffered a stroke.
Since then I have been admitted to numerous hospitals in Melbourne with neurological symptoms and extreme pain. I'm now often restricted to a wheelchair, and sometimes can't speak or think properly. Humiliatingly I've also lost control of my bladder most of the time.
Michael has been with me every step of the way, taking days off work to chauffeur me around Melbourne, lift me in and out of the wheelchair/bed/car/couch, cook every meal and deliver it, cut my fingernails, brush my hair, shower and dress me.... I know I couldn't have gotten this far without him, or my parents and sister who have also cared for me.
I have several brain lesions and demylination, which is damage to the covering of my brain nerves - this showed up on my MRIs.
My lumbar puncture results had white blood cells indicating meningitis or some other chronic inflammatory infection of my brain.
In July a PET scan showed up a Level II lymph node in my neck, so I had surgery to get this removed. Fortunately it was 'reactive but inconclusive',meaning I don't have lymphoma or sarcoidosis in that node, but it had some kind of infection.
After this I was able to try immunosuppressant therapy, aka steroids, in the hope that this might help. At this point it was thought I might have either MS (multiple sclerosis) or neurosarcoidosis. Unfortunately I had an adverse reaction and was weaned off them within a fortnight (after gaining around 8kg!).
Most recently, in September 2017, I was able to get into a consultant neurologist. His opinion, is that my MRIs do not look like MS, and that the demylination might not be as bad as originally thought!
This is a huge win! BUT of course there's a big downside as well - his recommendation to my regular neurologist is to have a brain biopsy done.
There are high risks associated with this, as it will affect the left side of my body - my dominant side.
I'm currently only being treated with drugs to help with pain and inflammation. Michael tells me that I'm improving at the moment - this means that I'm able to get out of bed on my own, and spend a few hours of the day doing something other than sitting or lying down on the couch. The fatigue, muscle pain and head pain is constant.
Hopefully I'll soon get a referral to a pain specialist, but that referral relies on being closer to a diagnosis.
It seems crazy that only a few months ago (that I don't really remember) I was happily at work full-time with a great career ahead of me. Having been off-work for 5 months, I have burnt through the savings I had built up that I was hoping to put down as a house deposit, and have no income coming in. Because my condition has been severe, but unable to be diagnosed I have had so many expensive consultations, scans, blood tests and other tests done for any additional insight into my disease, and have many more to go.
One of the hardest things is that so far I've been unable to claim any sickness or disability benefits from the government because I do not have a diagnosis.
I am asking for your assistance to get me and my amazing partner Michael through this.
These donations will go towards specialist appointments, radiology & pathology testing, medical equipment, medication, and daily living expenses.
I also need help at home with things like cleaning, cooking and shopping as I can't get around by myself.
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