Jun 4, 2014

"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

Jun 2, 2014

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! :)

Apr 14, 2014

Concussions, a Lesion and 2 Aneurysms oh my!

This week I had a stay in hospital for a couple of days because of 2 aneurysms found in a recent CT scan. The experience has left many friends and family with questions as to why I was there and what is in store for the future of my noggin. Though I shared some quick updates while I was in the hospital, I wasn't able to share many details or answer any questions. So this post is for all of the folks who care to know the full story...not so easily squeezed into a facebook update. ;)

To understand the present I will start with a quick recap of the history of issues with my head due to many concussions and a wonky pituitary. The pituitary problem was discovered about 15 years ago when I was suffering all kinds of weird symptoms that had my doctor concerned I may have MS, so she had me booked for an MRI. The first MRI showed there was nothing wrong with my grey matter so MS was not the cause, but they made me come back next day for another as they had seen something else they wanted to focus on. The second MRI showed something wrong with my pituitary gland but the neurologist wasn't sure if it was a lesion or tumour, so I was booked for another six months later to see if there was any growth of the spot.

Once I knew the concern was my pituitary I did some research on what the heck that gland actually does, and when I found out it controls all the hormones in my body I decided being on birth control pills, which play with your hormones to prevent pregnancy, probably wasn't a good idea so I stopped taking them. This alone caused many of my symptoms to subside and things got better. After the 3rd MRI showed it was not a tumour on my pituitary, it was determined that the lesion was not a threat to me (certainly not worth the risk of surgery to do anything about it) and I would have to live with it. Stress causes it to flame up a bit which wreaks a little havoc on me, but self awareness and stress management helped me get along just fine once I understood what was going on in my head and its impacts on my body overall.

The tales of the many blows to my head are a whole post on their own (and really these stories are funnier told in person with all of my dramatic gesturing heheh), but one of the worst was the last one almost 7 years ago while we were on strike. I was trying to get Sasha to sleep in my arms as this was back in the days she still needed naps, and I sat down in my camping chair, which unfortunatly was placed too close to the corner of a large concrete planter. When I sat down the back of my head coned right on the corner of the planter causing those around me to say "it sounds like your head just cracked open!". Sometime between then and now I found I had actually cracked my skull a bit that day!

I still have post concussive issues, but like the pituitary problem, once I know what is wrong and how to manage it I'm able to live with it. What else can one do?

Towards the end of February I started having a whole new feeling in my head I wasn't used to. And a few days later I had an explosive pain in the centre of my head that almost debilitated me. It happened while giving a presentation with my fellow PAC members to our school board, who are planning to cut the inner city funding to our community school that helps children in so many working poor families in our neighbourhood. Anyone who knows me is aware of my passion for strong neighbourhood public schools for all, and having my daughters school face negative consequences made the fight to protect them even more personal. Sasha has friends that would be hungry at school if not for our breakfast and lunch program, and who would struggle so much without the extra staff and supports our school is able to offer with the inner city funding. The changes are scary for people we care about, so even though I have experience speaking to the board, this time was actually a bit stressful I suppose. And that stress, on top of months that have had me stressed from work instability, financial worry, trying to juggle too many volunteer hats and falling behind on my list of tasks led to the sudden tension spasm explosion in my mind.

Thankfully, I have learned it was not a genuine bursting, or I might not be around to tell this tale. Clearly I AM still here, so you already know this story has a happy ending. :)

Because of my history of cronic head pain for whatever reason, once we were done with our presentation I simply went home. I skipped the Co-op Board meeting I was supposed to go to next and went to bed early. Figured I should take it easy like any other time my head is suffering. After a while I noticed that weird throbbing that was unfamiliar to me was not going anywhere and had become fairly intense, so I finally went to the doctor to make sure this new sensation was documented.

She was concerned about the explosive pain I had which is often a sign of stroke, and told me she was gonna send me for a CT scan to find out what might have caused it. The scan was scheduled for about 3 weeks later, so I figured if the medical world wasn't too concerned about rushing me in, and I was still functioning ok after so long, it was likely no big deal. Continue with taking it easy, skip a meeting here and a social event there and all should be good.

I went for the scan on Tuesday afternoon (5 1/2 wks after the explosion in my head). Tuesday evening after Sasha was in bed I got a call from my doctor. The scan had found 2 aneurysms in my head and she was going to speak to a neurosurgeon in the morning to see what should be done! I spent that evening reading up on brain aneurysms to find that there are many procedures used to deal with them depending on where they are located in the brain, and not all procedures require surgery. Got a little freaked out at the range of recovery times, and also from scary consequences of aneurysms bursting which significantly reduce your chance of survival, and if you survive increases your chances of permanent brain damage.

I fell asleep that night thanking my body for breathing.

By lunch time the next day I called her and said I wanted to know what was going on, and it turned out the neurosurgeon she had been trying to reach was out of town til Friday. She called me right back after she contacted another at VGH who wanted me to go to the ER right away and get admitted so they could assess the situation. Kinda scared me that things were moving so fast now.

Finally settled into my temporary bed. A room with three walls,
one made of glass. I could watch the nurses at their station in the
reflection. Not very interesting, but helped me know I wasn't alone.
It was 6 hours from the time I got there to the time I was actually in a bed on the 5th floor for neurology patients. The first night I was watched like a hawk by my nurse, and was awoken every hour with the same routine: check my blood pressure, shine bright light in my eyes to make my pupils dilate, take my temperature, ask me questions like 'what's your name, where are you, whats the date', and run me through a series of tasks to check my motor skills. All these things are done to make sure I haven't suffered any neuro damage. I also wasn't allowed any food or drink so I was ready if I needed to be rushed off to surgery at any time.

A room with a view. Kept hoping to see my buddy land an
ambulance on the helipad, but the only chopper that landed
came while I was having a test done so I missed the action!
The hourly check ups continued throughout the next day, whenever I wasn't being wheeled away for a test that would help the neurosurgeons prepare a plan of action.

The day started with an xray to make sure heart and lungs looked ok for surgery. Then I had a walk about with the physiotherapist who would help me in recovery after any potential surgery. At lunchtime I was taken for an MRI. A little while later I went for the Cerebral Angiogram...this one made me nervous. Well, really it was the waiver I had to sign before going in acknowledging that I might have a stroke during the procedure that made me nervous. Ummm. Wasn't I in the hospital to prevent having a stroke?!

Once they had me on the table I started trembling and even weeping a little as the fear started kicking in. Apparently they get this reaction a lot. When they offered me something to help me relax I said 'hell ya!' in my head, but my imporing head nod and puppy dog eyes got the point across equally well. Once they gave me something to relax we moved right along.

The angiogram was one I've never had before and some have asked me what it is, so here is my summary of what was a pretty intense experience. They insert a catheter into an artery in the groin area which goes up to the arteries in your neck and uses a special dye and camera to take pictures of the blood flow in the blood vessels of the head and neck. I watched the show going on inside my veins on a giant monitor right beside of me (seriously large, the screen was almost as long as my body!) They warn you when the dye is going into each of the arteries in your neck that you will feel "some heat and some discomfort as it passes through" which translates into "there will be hot flames shooting through your head and when it goes through your eyeballs prepare for searing pain" - or maybe that's just my experience. But they were right when they told me the sensation would pass quickly, it did. And an hour and a half later the whole thing was done. Phew.

After all the tests were done it was a waiting game for the neurosurgery team to decide what, if any, treatment would be required to deal with my aneurysms. I was anxious to know which procedure would be done so I could start wrapping my head around the possible recovery time which could be anywhere from a week to over a year depending on how it goes. The neurosurgeon didn't visit me til later in the evening, and then he told me they had determined no surgical procedures would be required. Yahoo!

They had not found any evidence of a rupture, and after comparing my current scans to ones done in the past, it seems the aneurysms had been there quite a while. One from waaay back, and the second seen on the scan after my last conscussion. So I had in fact been living with these things for many years, which is quite common. You can live with an aneurysm and have no symptoms or problems ever. It's only dangerous if they rupture or are in a place in your brain where you could die or suffer brain damage if they rupture.

My little friends (for you have to embrace these kind of things if you have to live with them) are not under the skull, so if they rupture there is no danger of bleeding on the brain. There is danger of other problems if they rupture, but given their location below my skull, the danger of the surgery is not worth it at this time.

The monitor we watched hourly for
my latest blood pressure reading.
It turns out the biggest problem now is my blood pressure. It has always been 'a touch high' when tested throughout my life, but it seems its no longer in a healthy range. So I will now be taking medication to stabilize my blood pressure as it presents the biggest danger of any ruptures occuring from my aneurysms.

Yay! I get to eat again!
First meal in 2 days.
Once I was given the all clear from the neurosurgeons, the last half a day of my stay was a waiting game for the neurology team to come assess me and give their approval for me to go as well. No significant damage done so I was officially free. The main purpose for my admittance had been to fast track all the tests needed to prepare me for any surgical procedure they thought I might need. If my doctor had booked all these tests it could have been many months to come up with the answers they were able to clarify in only a day or two by having me come through the ER. All worth it in my opinion.

Now that I have a handle on the various types of pain I'm dealing with in my head, and the various impacts they have on my body overall, I know what I need to do to take better care of myself. Primarily, manage my blood pressure and do a better job of managing my stress. The clear cut instruction of "if you need to take anything to relieve pain in your head, you need to stop as much as you can and take it easy until you don't need the pain relief anymore". Also, I tend to wait til I'm in a lot of pain before taking anything to relieve it, and I've been told to not wait so long on that. Pain can cause blood pressure to spike as well. It was also made clear to me that I really don't get headaches like normal people and if not taken seriously the outcome could require more than just a few days off work to recover.

Some things, like work instability, are out of my control. But other things, like my task list from volunteer responsibilities, are within my control. So now I'm reflecting on what I can let go of to give myself more time to take care of me. More quality time and less responsibility. My problem is that I really enjoy being involved in the communities I live and work in...so these are not easy choices for me. How do I stay involved without overdoing it?

Along with the new blood pressure medications, it may alleviate some concern for you to know that my cranium will continue to be monitored over time. I will be referred to a new neurologist who I will see somewhat regularly, and in one year I will go back to VGH to have the same tests done I had while in hospital. Though I am not super keen to do the cerebral angiogram again and hope that won't be necessary!

I've always been a person full of gratitude for the bounty of good in my life, but now that gratitude is seriously overflowing. This experience really solidified that we are surrounded by an amazing community of family, friends and neighbours who fill my life with an ridiculous abundance of happy, and which has always kept me afloat when I start to sink from bouts of depression. I learned a long time ago that friends are the best life preservers you can have. And whatever comes our way we are not alone to face the challenges...that makes stres reduction soooooooooooo much easier! :)

Serious gratitude to all of you that lifted my spirit while I was trying not to be terrified, and for supporting Mark and Sasha by bringing them food, offering to run errands and take care of them, so I never had a worry for them while I worried about myself. Words just can't express how full of gratitude I really am.

I also have to mention my gratitude to all the nurses and staff that took great care of me while I was in for my short stay at Vancouver General Hospital, and my gratitude that as a Canadian I was able to go through all of this medical mayhem over the years without fear of not being able to afford the care I needed. I can't even imagine the stress this would put on families who live in countries that don't provide full health care for all of its citizens. We've got a good thing going in this country - Stop messing with it Harper!!

So there you have it folks. My cranium keeps taking a licking but it hasn't knocked me out yet! I was already doing many things right to take care of myself before this experience, and now my blood pressure has given me something new to work on. It'll be a few more days til my body gets used to being on the new meds so I'm taking it very easy in the next while to adjust to it. But I still have much to do in this life of mine and I will continue to live to the fullest that I can handle every day...while allowing myself to have days doing nothing more often too. That's not going to be as hard for me now as it used to be. ;)

I promise to keep taking good care of myself so I can be around to share hugaroos with all of you for many years to come.
:D xo

Nov 14, 2013

Banana Goes Visiting

A few months ago we spent a weekend at grandmas and we had some fun with filming in her backyard. Sasha wanted to create something starring her fave monkey Banana, so we gathered footage of him making his way here, there and everywhere.

Once I finally got around to editing the randomness into a bit of a story sequence, we created a quick script and recorded the voice over. A little more tweaking and here we go:

Banana Goes Visiting. A Sashaland Production! :)

The process was a little bit backwards trying to piece things together, but we learned a lot trying to work together on this quick and easy piece to practise with.

Now she is busy writing scripts for plays and movies she can make with her friends. I shared with her that one lesson I've learned while trying to develop skills to create a documentary, is that editing is much easier if you know what you're filming first! lol

Jun 16, 2013

Song for a Cloudy Day

While we walk to school, or anywhere actually, Sasha often makes up songs as we go. She is really good at off the cuff rhymes and melodies. However, we never remember them.

"Sunshine Song" is one easy little ditty she wrote when she was about 4 years old that stuck, and we sing that often. I should post that one one day...but here are the lyrics:
Sunshine sunshine
Shine in the morning
Sunshine sunshine
Shine at lunch time
Sunshine sunshine
Shine in the afternoon
Sunshine sunshine
Now you set

The other day it was a particularly cloudy morning, so naturally the song she started making up was a cloudy day song.

This time there was one line in particular that totally embedded itself in my head. As I walked to work after dropping her off the tune repeated in my mind over and over. Then a follow up line came to mind. I shared the 2 line combo with her when I picked her up and we determined we had a nice chorus for a song!

We have many musical friends in our life and I thought it might be fun to invite them to help her finish a song. I asked her if she would like to try a collaborative music project with some fellow creative folks who can add a line and continue building on the tune she started. She thought that was a great idea!

So, here's what we've got so far with our "Song for a Cloudy Day":

Sasha's line that started it all is:
Yes, there are grey clouds over the city
and it's about to rain

My addition was:
but when you live in a rainforest
why bother to complain

We welcome all of you to add a line, create a verse, show us how to play this tune on the guitar (for me) or piano (for her), funk it up, rock it up...play with it however you feel inspired to and then share your contribution with us! :)

Then I'm going to compile all the bits we receive from folks to edit the final "Song for a Cloudy Day" video with Sasha for her to share. I will work with her through the editing process so she can learn from it, and also share her own amazing and imaginative ideas.

Sasha says she will share updates on what she learns on her blog, and if you want to play along with us on this collaborative musical adventure, here's the link:

(July 25 - noticed that Mark has added a new verse on Sasha's blog. Now it's your turn!)