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Sarah Elizabeth McMillan

MA, MSW, RSW

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trusting your sight

The TTC: a blessing and a curse

Posted on February 6, 2013December 31, 2018 by Sarah E. McMillan

Empty seats inside a subway car

One of the biggest drawing features for living in Toronto is the TTC. What a scary concept, but it is true for me and it seems to be true for a lot of others as well. When people have asked me how I am enjoying life in the big city my answer usually involves something … Continue reading The TTC: a blessing and a curse

Tagged accessibility, car culture, defensive, emotional stress, Toronto, trusting your sight, ttcLeave a comment

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It doesn’t matter where it is or what it’s for - the idea of being out in the world after a major flare or surgery can be super anxiety provoking.⁣⁣ ⁣⁣ I’ve learned the hard way to start low (intensity) and go slow (duration), which isn’t easy. But I don’t think I’ve always done a great job at explaining the mental and emotional gymnastics I’ve got going on in my mind and body as I try to amp up activity levels.⁣⁣ ⁣⁣ This week I started back to work part-time after a month of being off and before that, a year of working full time without any big health related incidents. I have a number of thoughts and reflections I want to share about returning, planning for the future and how chronic illness figures into all of this. However I am feeling extra tired right now and so I hope to share more in the coming weeks. ⁣⁣ ⁣⁣ For now I’ll leave you with a photo I love from this past weekend and a quote that nicely illustrates this time in my life.. ⁣⁣ ⁣ 🚪 “In the universe, there are things that are known, and things that are unknown, and in between, there are doors.” -William Blake⁣ ⁣⁣ ⁣ #chronicillness⁣⁣ #spoonie ⁣ #flareup #recovery ⁣ #marfansyndrome #mfs⁣⁣ #connectivetissuedisorder #ctd⁣⁣ #doors

It was so nice to spend a few hours enjoying the outdoors this weekend after weeks of mostly being inside 🍂 ⁣ ⁣ #autumn⁣ #manythanks⁣ #shorthikes⁣ #chasingwaterfalls

There are times in my life where I am really hit over the head with how serious my disorder is. ⁣ ⁣ The events of the past month have been some of those times. ⁣ ⁣ I’ve almost become desensitized by the concerned/confused looks on healthcare professionals faces when they read my history or their comments about how rare my condition and co. are or how well I’m coping with all I’ve been through. To me it is the norm and after working in healthcare myself, I’m humbled by the suffering I’ve witnessed. But every now and then it really breaks through.⁣ ⁣ For some reason these deep valleys in my life with chronic illness tend to light a fire underneath me. They spur in me an intense desire to seize the day, to vision for the future, to make a difference on this planet, to live up to the lessons this illness must have been sent to teach me.⁣ ⁣ What I know is this kind of reaction can be an incredible force for perseverance and action. It is what has sustained me for so long.⁣ ⁣ What I’m learning, though, is this reaction can also be a band-aid. It covers up and pushes away the anger, the fear, the shame, the resentment and the cavernous sadness that also comes with this life.⁣ ⁣ The last few days I’ve really tried to allow myself to feel these feelings truly. To grieve the parts of me that feel unwelcome. To get to know them a little better so I can hopefully, eventually, make peace with their presence in my life. ⁣ ⁣ This is a work in progress and so am I.⁣ ⁣ #octoberwork⁣ #healthgrief⁣ #integration⁣ #allthefeels #duralectasia⁣ #csfleaks⁣ #newdiagnosis⁣ #intracranialhypotension⁣ #connectivetissuedisorder #ctd⁣ #marfansyndrome #mfs⁣ #tarlovcysts⁣

“There’s no way to fix this. It will be something you will have to manage.” My heart sunk and my stomach dropped. These were not the words I wanted to hear and he knew it.⁣⁣ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⁣⁣I had an appointment yesterday with an international expert on Tarlov cysts, dural ectasia and consequently CSF leaks. He was very kind, interested and I felt like I could really trust his words. It did make hearing this news easier.⁣⁣ ⁣⁣ Even though I knew this was likely coming, I still held out hope for some kind of medical fix. He said that even the most daring neurosurgeon in North America would not consider me a surgical candidate. Given how my DE has ballooned out and spilled into my presacral space – there is no available technique to bring it back. ⁣⁣ ⁣⁣ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ The positive news is he found evidence of a CSF leak - faint haemosiderin staining (dried blood) on my cerebellum. ⁣⁣ ⁣ Those who have struggled to find a diagnosis for their illness will understand how on earth I can say this is positive news. As he put it – this gives us evidence of the actual problem rather than guessing or trying to throw solutions at the unknown.⁣⁣ ⁣⁣ I am going to have another brain MRI in a month to see if there is more staining after my recent episode. If so I might have a new diagnosis to add to the pile: intermittent intracranial hypotension. And as for Shirley - she sadly may be here to stay.⁣⁣ ⁣⁣ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ Now back to managing. ⁣⁣ ⁣⁣ (Yep, that’s my brain. Swipe to see a gnarly image of Shirley and my DE)⁣⁣ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⁣⁣ #duralectasia⁣⁣ #csfleaks⁣⁣ #brainmri⁣⁣ #intracranialhypotension⁣⁣ #connectivetissuedisorder #ctd⁣⁣ #marfansyndrome #mfs⁣⁣ #tarlovcysts⁣⁣ #gooddaysbaddays

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