"I thought that love was science fiction
Until I saw you today
Now that love is my addiction
I've thrown all my books away"
Until I saw you today
Now that love is my addiction
I've thrown all my books away"
The Divinyls
It's alive! It has been about 5 months since my last blog post and I don't know where that time has gone. Sucked into a black hole and gone forever....until I work out how to bend time and live it in an alternative dimension. You may think I have lost my marbles or you may think I have been reading too much Stephen Hawkings and the like. String theories, quantum physics etc...Maybe it's a bit of both...
Around the time of my last blog I started taking interferon injections at home. What a clusterf*ck that turned out to be! I experienced terrible side-effects that seemed to get worse as time went on. I suffered horrible fatigue, constant headaches, muscle and joint pain, frequent fevers and hyper-sweats - and that's just a few of them. It was not the treatment for me. After a particularly bad night following an injection I decided to quit them cold-turkey. I don't think it's recommended to do this but I told my doctor I couldn't do it anymore so I just stopped. Since then I have felt AMAZING. It turns out that the old drug (Rituximab) was actually still suppressing my immune system so I am a little frustrated that I had to go through 5 months of hell for nothing! I've had a couple of hospital visits with weird symptoms recently but generally I am feeling pretty good.
Having said that, my B cells are now recovering from the Rituximab and I can't have it anymore because of my allergic reaction last time. My neuro and I have been debating, arguing and stalemating on what drug I should go on next. I am now actually 'unprotected' from MS activity at the moment and that is not ideal. I have a choice between two drugs that I am terrified of and I am going through somewhat of an existential crisis. Do I not take anything (apart from eating VAST amounts of colourful vegies and liver - yes, liver) and risk another bad relapse OR risk feeling great? My neuro is confident the next one will be bad. Do I take the 1 in 1000 to 1 in 10,000 risk of getting an irreversible brain infection and take Tysabri? Do I risk the varied side-effects of general immuno-suppression (including blindness, hair loss and heart problems) and take Fingolimod? These are my only real options. My doc thinks I can't afford to NOT take a treatment. It's a rock and a hard place. I keep hoping for some kind of devine sign from the universe but then I remember that the universe doesn't have an opinion and really doesn't give a shit. I'm just in it. I wouldn't mind living in an alternative reality right now! It's all Science Fiction - or Non-Fiction in this case. The decision is practically impossible to make so I am giving it TIME. What that will do I don't know. I have about 3 weeks before I have to start on a treatment and after I get the myriad tests results back I will hopefully be closer to a decision. BLAH. It's horrid and sometimes I just want to swap my skin with someone else! Not to make a skin-coat like Buffalo Bill, just, you know, to be someone else. There are many redeeming qualities I possess as a person, I'm sure of it, but MS takes up too much of my mental and physical stamina sometimes I just want a break. My need for escape has had some positive effects on my creativity though. I have been sketching again and playing with my violin (still badly). And the author in me wants to write a tome. The chef in me wants to feed the world crazy vegetable concoctions. Maybe I should whip out my wig collection and just pretend to be someone else today. I have a Chrissy Amphlett wig, a Morticia and a hot pink bob - ala Julia Roberts in Pretty Woman. Oh, and a Robert Plant! I think I'll be Robert today. This gives me a nice segue to THE SONG. Science Fiction is a great tune (and relevant as my life often feels like one long sci-fi episode) - Chrissy Amphlett was even greater.
Chrissy Amphlett died last week after a prolonged battle with Multiple Sclerosis and Breast Cancer. It has absolutely broken my heart. I have idolised her for decades. I LOVED HER. I was a mental fan of hers from a young age. She was just so rockin and cool and untouchable to me. She lived down the road from my parent's place when I was in high school and I have fond memories of stalking Chrissy down the aisles of the local supermarket with my big sister beside me. She would always wear oversized dark sunglasses and big furry collars. She seemed to float rather than walk and she made grocery shopping look tres cool. She was very gracious because she didn't seem to mind two giggly teenage girls shadowing her every move - and we thought we were so inconspicuous! My Dad went to her house to give her a quote for some French polishing and he was pretty chuffed to tell us all that she was flirting outrageously with him. We all humoured him and said' "sure she did, Dad!" She appealed to everyone. My mum loved her too, despite Dad's wild imagination. It is tragic to lose such a talented, incredible person who was so integral to Australian rocknroll. And she was young. I was going to write her a letter last year (my first ever 'fan letter' to anyone) but I procrastinated and now I regret never getting around to it. I would've said thank you for sharing her voice and songs, for the inspiration (and dance moves/pouts) and for showing me how to face scary health issues with stoicism, dignity and optimism.
RCK'N'FKN'RLL, Chrissy.
