"I had a what now?!"

The neurologist I was finally referred to was Dr. Benavente who I was scheduled to see at the Stroke Prevention Clinic at VGH yesterday.

First thing I am handed is a clipboard with paperwork to fill out and this brochure from the Heart and Stroke Foundation. This made me laugh and tear up just a wee bit at the same time. I'm thinking "I had a what now?" and "why do they look so happy?" and "I had a what now?" and "open brochure and read it girl". And my handy dandy mantra to calm me down "breathe..."

And without further ado, here's all the medical jargony details of what my head has been through lately, summarized to the best of my ability from the notes I took during my appointment.

First of all, my aneurysms are fusiform, and these rarely rupture so surgery is not usually ever needed. Great! So happy they are not saccular which have a bigger risk of rupturing and definetly require treatment.

He said there is likely no chance of my aneurysms ever bursting, though when I pressed him on what could happen if they did (since it is possible), he said it would be paralysis or some other scary outcome, as they are at the base of my brain where it joins the spinal cord (below the skull cap). But they are the kind of thing you can be born with and live a long and healthy life with, so I just told him I'm gonna hold him to that "there is no worry of them rupturing" and now you all know where to find him if he's wrong. ;P

Try relaxing while waiting 30 min
next to a poster like this. Ischemic.

He and the neurosurgeon (Dr Gooderham) believe the new headaches I began experiencing in February have likely been due to Reversable Cerebral Vasoconstriction Syndrome (RCVS). Apparently there are a cluster of diagnoses, such as the onset of my 'migranous vasospasm' that are lumped under one syndrome, with various causes but a temporary change in blood flow as a common symptom. Mine likely due to an increase in my blood pressure combined with my migraine, post-concussive and pituitary history.

Add in my potential for blood clotting and an irregular heart rate and we have the perfect storm which led to a Transient Ischemic Attack (TIA). Otherwise known as a mini-stroke.

Yay! More freakin acronyms for me to try to remember and learn all about. Joy.

Keep calm and carry on. Ha!

But really - joy! I have not suffered from a brain bleed, or any apparent neurological damage, and the aneurysms I have happen to be the kind that rarely burst so surgery on my cranium is not needed. And I was in a stroke prevention clinic, which means I am receiving care to help keep me here. Joy.

This is serious business and a sign it was time for me to make changes in my life to reduce stress, and I'm glad that I already have. I'm on track to avoiding a genuine brain attack. It's scary to read all this stuff warning me I'm in danger of another stroke (still in shock I had the first one and thankful it was a mini), but reassuring because it is all about lowering my risk of that ever happening again. Who needs roller coasters when your brain gives you this up and down loop-dy-loop existence?

So now what? Dr. B has prescribed another calcium channel blocker that should prevent the headaches from starting, since it's obvious the pain relievers don't work to stop pain once it starts, as well as aid in reducing my blood pressure. ahhhh. Great idea! Within a month I should notice a difference and be back to the migraines, and other headaches I'm used to living with.

The follow ups in my future are with my family doc at the end of June, Dr. B in 3 months and a visit with Dr. G and an MRI screening next spring. Other appointments as needed.

I am already working on my list of new questions to ask the docs when I see them next, so if any of this has questions popping up for you, please feel free to share them with me and I will add them to my list.

Should I experience any bad symptoms such as weakness in limbs, trouble speaking, vision problems, any new head pains I can't identify or another explosive pain and/or dizziness, I need to head straight to ER to have checked out. This is a good choice for everyone actually. If any of you experience a sudden onset of these symptoms you should probably get yourself to the ER too...you could be having a stroke! Better to be safe than sorry.

Another tip of the hat to our public health care system (a big reason we are not destitude from medical bills!) and a moment to draw your attention to the Canadian Health Coalition campaign to #Stand4Medicare and implement a new health accord for Canada.  Did you know the federal health accord expired and negotiations between the federal and provincial governments have stalled? Visit healthcoalition.ca to learn more, sign petition, and find other ways to take action to stand up for our national health care system today!

Now that I am deeply aware of the severity of my blood pressure and risk for full on stroke, I'm gonna turn those odds around! Time for a cleanse and continued focus on health. Keep on keeping on with that deep breathing, relaxing, having fun, and enjoying life stuff. Hugs a plenty! :D

wake up for @ positive kat

Celebrating her 8th with
rainy day fun at Playland. :)

It's been almost two months since my exciting hospital experience and for the most part I'm feeling fine. Would love more days with no head pain, but otherwise all my focus on stress reduction and a health first attitude has gone well for me so far.

For a few weeks it was hard to shake the feeling of being a walking time bomb. I have kind of felt that way at times in the past (potential for blood clotting, pituitary lesion, messed up kidneys, etc...crap, that makes me feel old when I list ailments that way! gotta remember I'm healthy in many ways too, lol) but last month made it feel really, really REAL.

Every task had me thinking "is it safe to do this?" or "is this gonna be the day something explodes inside?" and I was afraid of everything. Not a lot. Just enough that deep breathing was something I was doing constantly to calm down. Ok, a lot. Enough time has now passed, and clearly I'm still here, so the edge has come off those feelings for the most part.

I would say the emotional toll of the experience was really what I have been recovering from. Every hug shared with me as I got out and about again was a "thankful you're alive" kind of hug, which had me grateful that so many people care about me, and upset that so many people were so worried about me.

I still get weepy at times, especially when people ask about the things I don't have answers to. Friends and family (like sister-in-law who's a doctor) have given me a list of questions for when I get to see a neurologist who can answer them. (Like: "is there a chance there was bleeding on the brain in my explosion headache, but the blood was absorbed over 5 weeks between the pain and the scans?"; and: "what are they gonna do with those things so they don't rupture on you one day?")

The wait to see another neurologist is almost over though. When I was in hospital, the neurosurgeon, neurologist and my family doctor were all referring me to a neurologist that specializes in aneurysms and post concussive issues. Turns out he's not taking new patients (though they may still try to get me in one day). Plan B was to see the neurologist who I saw back when the lesion on my pituitary was found, but she's not able to see me until like November. When I said it would significantly reduce my stress and concern if I could see someone sooner, plus my doc is worried that the pains in my head are still there, so I was then referred to another guy who was able to see me June 26 (the day before my birthday so was hoping for the gift of good news)...but when he saw my file he figured it was a waste of time to see him and he referred me to a neurologist in the Stroke Prevention clinic. And I will see this doc tomorrow! Funny how my waits seem to go from long-way-in-the-future to NOW.

This whole experience has amplified my gratitude for every day. Truly a wake up call that has had me feeling like I'd been given a second chance with life, even though I didn't almost die. (Totally a weird feeling to be honest.) Lying in a hospital bed for 2 days, waiting for a potential brain surgery that may or may not: a) kill me, b) leave me brain damaged, c) have me recovering for up to a year or d) who knows?; kinda left me reflecting on whether I had any regrets...things I would be really sad to not have accomplished before checking out of this world.

As the song goes "Regrets, I've had a few", but for the most part I have a life that makes me really happy and I am blessed with an abundance of good people in my world. And "I did it my way" ;) 
And not that I feel I've wasted much of my time on this earth, but I had taken it for granted that I still had lots of time to finish more of the things I want to do in life, and now I have focus for what I want to do with my time.

When reflecting on what volunteer responsibilities to let go of, I decided I would remove all hats (except for things that are specific tasks, like doing our monthly rotation on the compost for our co-op, and finishing tasks I started in preperation for our Celebrate Mt Pleasant Days event on June 7th which is gonna be so much fun!) and just give myself permission to take a year off and put my spare energy to use on continued healing and finding better balance.

It has been a benefit and a curse to have very few hours at work in April and May. Money stress makes me worry, but I know we'll be ok in the long run, so falling a bit behind on bills could be worse. Remember to breathe.

I've used my free time for plenty of reflection, meditation, stretching (want to get to some yoga classes with neighbour friends, but doing some moves I learned way back in prenatal yoga), going for walks in the woods with friends and their dogs, going for long walks all day on my own (just cuz I love walking), a bunch of garden therapy getting some food growing on our patio, great hangouts with friends and lots and lots of writing! Also enjoyed flashbacks to the past looking at old photos (like before digital times old) which reminded me I have had a good life so far. Plenty of ups and downs, full of challenges that have shaped my character, and many people I've had fun adventures with. Lucky girl!

 

I'm very glad I still have time to enjoy the ride of life...tho can't ride on rides anymore. My thrill seeking, adrenaline rush days are behind me. At least I can say 'been there, done that' for lots of coasters and even jumps from high places! While spending a day at Playland for Sasha's birthday I found that the swings, ferris wheel and the Pirate ship are my thrill rides now, lol. ;)

My focus on stability is a challenge and trying to land some stable employment is my biggest stress. I hope to end up full time at Britannia one day, but sitting around waiting for that is hard for me. So I have also spent time on my resume and cover letters to apply for work elsewhere. Not a lot of options out there that appeal to me, but I have exceptional people skills, learn fast, and have a diverse range of work/volunter exprience that will land me somewhere good one of these days!

Until work is worked out, I'll keep focusing on more fun with friends and finishing creative projects I need to complete. A while back I chose to let go of the full documentary idea for the Educate Me Project, but now I'm going to make some short films by breaking out ideas from the feature length project.
I'm very excited to get to work on the first which will be ready for production soon with the tagline "If governments are going to run public education like its a game, let's turn it into a game we can win."

Also going to keep using the filmmaking skills I've acquired to work with Sasha on her Sashaland Productions, and we have two projects we're going to finish together down the road. 

I'm practicing my music and have songs to sing, so I might conquer a fear and find a stage to sing them on for my birthday. And trying to learn German in hopes of being conversational before our potential trip to Germany/UK in the fall. I love having things to look forward to and nothing beats an epic family adventure! :)

This blog will still be home to things I want to share with friends and family like updates on health and good times. (this blog has evolved since it started as a way to share pics and info for those far away about my pregnancy and birth of our baby...who now is 8 and very capable of sharing her own stories) Otherwise, I am now gonna put my creative energy into @positivekat with writing, filming, and making music. All this I'm gonna share thru my new Saucy Side Productions site.

Now you're up to date on life with me. More news to come after I see the neurologist. Thanks to all you faboo folks for all the positive energy you continue to give me! :)