2/19/2020 2 Comments Putting an End to the Pity Party.
Last Thursday I saw my neurologist. While I have had a LOT of improvement with many symptoms, and some of the lesions have become less inflamed- they have not gone away and are unlikely to fully resolve. That was that. It was confirmed I am at my new "baseline", and now is the time to figure out my next step. My neurologist acknowledged my knack for persevering, and staying as positive as I am through all of this. Truly, the news that I may not recover more made me pretty devastated, because my personal expectations are high. I anticipated (hoped for) a lot more recovery by now and am grasping at anything that makes me feel slightly more "normal", or gives me any sense of accomplishment. What ARE lesions, anyway? "In multiple sclerosis (MS), the body mistakenly attacks the protective layer around the nerves in the brain and spinal cord (also known as myelin). These damaged areas are called plaques or lesions. ... However, lesions tend to happen more in people with relapsing MS." This is what my brain MRI looked like in July 2019:What does my MRI look like, now?The latest scan was done without IV contrast medium (Gadolinium) and does not show all the inflammation, but you can see many of the current active lesions. So, what does it all mean?Much of the damage has turned into scar tissue. This means that while I still may recover slightly over time, it is unlikely that symptoms of this episode will fully disappear. Something you may notice quite quickly is that I am very upfront and honest, possibly to a bit of a fault. My joke has always been that "I don't lie, my memory is too poor for that." I'm being entirely honest when I say that the past 6 months have really, really sucked. What have my days or weeks looked like lately? Rest. Rest. Appointment. Rest. Sprinkle on a little bit of sadness and a lot of self defeat, but also pepper in moments of reflection, triumph, and celebration. Hard lesson I have had to accept... The resting often does not feel conducive to productivity, but without taking these breaks we surely break down. Sometimes when things aren't going smoothly with life, health, love or business, we can be extra hard on ourselves and less likely to make time for self care. Not making time for the things that bring mental peace or physical comfort, is the fastest way to absolutely crush your productivity. It is very important to remember that taking breaks is not the same as failing, or falling off track. Self care is different for everyone. It doesn't have to be fancy face masks, and sparkling bath bombs from Lush. Self care can also be as simple as playing Super Mario bros. for half an hour (or 3 days straight, which I may have done while recovering from a flu). Do something to let your mind stop beating itself up, and just relax! Pace yourself.
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January 18, 2008 |
When I was given the news, I remember just folding into myself and being embraced by my mum. We were barely out of the hospital, just about to reach the parking lot, and this news hit us like a ton of bricks.
With teary eyes and while still very spacey from Ativan I was given for the MRI, I turned to my mum and said,"Go big or go home, right?" We laughed, and I knew I was going to be alright.
With teary eyes and while still very spacey from Ativan I was given for the MRI, I turned to my mum and said,"Go big or go home, right?" We laughed, and I knew I was going to be alright.
I always acknowledge this day, and reflect on things I love and am grateful for.
Sure, circumstances in my life may have not been totally ideal over the past 12 years... but I have done so many things in such a short time, and am proud of that!
Here are a few photos from along the way:
These are some of the first photos or moments I thought of as I typed this post, and this is only a glimpse at some of the things I've done, or overcome.
These are some of the first photos or moments I thought of as I typed this post, and this is only a glimpse at some of the things I've done, or overcome.
Celebrating the fact that I can currently walk, see, talk, hear and taste. My sensation is still a little funny, but there are little improvements day by day. Feeling grateful, proud, determined and confident that I'll be back to thriving soon enough.
Thank you for all of your love and support along the way!
Thank you for all of your love and support along the way!
Fiona ♥
Well that's something I never thought I'd actually say...
Some of the things I've been through will make you say, "What the $#*&!?" But, I'll try to not dump it all on you at once, and perhaps you can relate to some of it. People have suggested I launch a blog for more than half my life. Now I'm at a point where it makes a little more sense to do it. So I'm just going to go for it, and dive deep, because that's the way I roll.
Here we go...
When you are at risk of losing everything due to circumstances entirely out of your control, it forces you into doing a very objective review of how you're living, what is most important, and who is most important. At my worst, when my brain could barely generate or piece together coherent thoughts, all I could think of was my family, my art, my home, my garden and my gecko, Leroy.
This year I spent my 30th birthday on life support, struggling to survive. Now I am home, and rebuilding. I am determined to nourish the things that are most valuable to me, because that's what life is all about.
To start the journey of unraveling what went on, why, and where I'm at now, stay tuned!
In this blog expect to read posts about health and wellness, multiple sclerosis (MS) and some other bizarre conditions ("Can you spell your diagnosis for me, again?"), baking (gluten free recipes!), houseplant care, DIY projects, and all things art related (painting, photography, illustration, modeling, makeup art, creative directing for photo shoots) and much more!
This year I spent my 30th birthday on life support, struggling to survive. Now I am home, and rebuilding. I am determined to nourish the things that are most valuable to me, because that's what life is all about.
To start the journey of unraveling what went on, why, and where I'm at now, stay tuned!
In this blog expect to read posts about health and wellness, multiple sclerosis (MS) and some other bizarre conditions ("Can you spell your diagnosis for me, again?"), baking (gluten free recipes!), houseplant care, DIY projects, and all things art related (painting, photography, illustration, modeling, makeup art, creative directing for photo shoots) and much more!