It only seems appropriate that I end the year with a blog entry.
I open by thanking my family and friends for their on going, unwavering love and support.
Without my John and our children I would be hopeless.
Without my Mom I would be lost.
Without my fellow monster fighter Holly I would be insane.
Without my regular check-ins from a number of incredible women I would be lonely. I would start listing them but then I would forget someone and feel dreadful. You know who you are.
Without my Wednesday "meeting of the minds" I would forget how to laugh. I already miss Nutcracker rehearsals for that extra time we get to spend together and the women I don't see on Wednesdays. Maybe you should all just show up at the studio anyways ;)
Without my Facebook friends and community(s) I would be bored, uneducated and dull.
Thank you.
2012 has been an incredible year.
Our children have grown, matured and are becoming some of the most amazing people I know.
Amy is fabulous. I was so proud of her during the Nutcracker and the kindness she showed towards the little dancers. While some of the older girls largely ignored the littles, Amy was always present and willing to help and encourage. To have other parents comment on how wonderful she is makes this Momma very proud. Shine on smart girl.
B has made a complete transformation since his heart surgery in March. Most notably he is growing. He has grew 1 1/4" in the past two months. He continues to try hard at school even though its challenging. He has formed some amazing friendships and is truly one of the most caring boys I know. This just proves once again that gender, labels and diagnoses do not define a persons character.
Dana is our brave song bird. Never silent and extremely resilient, Dana is turning into a very strong and confident young lady. She has an amazing memory which comes in handy for me. She is always available for a hug and is very intuitive about what each member of our five needs. I have to work extra hard to make sure she gets what she needs in return.
John has proven to me over and over again that I chose well so many, many years ago. Almost twenty three years if you are counting.
2013 will bring more obstacles and difficulties.
We can already see them and around them.
With each challenge there will be further growth, rewards and fresh outlooks.
We are looking forward to continuing expansion on our farm.
I'm starting the vision board today... I NEED a plan that I can see!
I am looking forward to learning more and spending time with more like minded families.
We are taking more control of our health individually and as a family. I am the expert on me and mine. Our expanding team is going to have to check their egos. I'm sure I will share much about that as January rolls on.
Farewell 2012.
Welcome 2013.
Monday 31 December 2012
Sunday 23 December 2012
Happy 18 months to me and holiday wrap up.
Yesterday I received a message from a friend of a friend.
It was completely unexpected that he even remembered but totally awesome that someone gets it.
It read, "Happy surviving 18 months of shit getting real."
December 22nd was not only my totally fantastic husbands John's 40th Birthday (HAPPY BIRTHDAY!!!) but also the monster and my 18 month post Gamma anniversary.
John and I finished our Christmas shopping in the morning. The kids made cupcakes for their Dad while we were out. The monster and I celebrated during the afternoon with ear plugs, ice, Tylenol and a nap (read small coma). John made his own Birthday dinner because I'm a lousy wife, mother and human when the monster is winning. Johns Dad visited for celebratory cupcakes and coffee in the evening. Coffee finally killed the headache and silenced the monster before bed so life is good again this morning.
So whats the big deal with 18 months you ask?
When I signed up for this adventure I was told 100 different things but two are highlighted:
Our entire family is officially on Holidays until January 7th. A well deserved break for John who has not stopped moving in months (maybe years). Though there is no such thing as a real vacation when you live on a farm, we will definitely be moving in a much slower pace.
Our family has many goals for 2013 and I am hoping to get some of the vision on paper very soon.
Everything seems more real when it's on paper.
A working work plan, a dream board, a wish list, a Pinterest Board ...
It may read a little like this;
xo
It was completely unexpected that he even remembered but totally awesome that someone gets it.
It read, "Happy surviving 18 months of shit getting real."
December 22nd was not only my totally fantastic husbands John's 40th Birthday (HAPPY BIRTHDAY!!!) but also the monster and my 18 month post Gamma anniversary.
John and I finished our Christmas shopping in the morning. The kids made cupcakes for their Dad while we were out. The monster and I celebrated during the afternoon with ear plugs, ice, Tylenol and a nap (read small coma). John made his own Birthday dinner because I'm a lousy wife, mother and human when the monster is winning. Johns Dad visited for celebratory cupcakes and coffee in the evening. Coffee finally killed the headache and silenced the monster before bed so life is good again this morning.
So whats the big deal with 18 months you ask?
When I signed up for this adventure I was told 100 different things but two are highlighted:
- At 18 months radiation becomes the most active and is working the hardest. I'm assuming that also means that side effects will be working just as hard. So far that assumption is accurate.
- I have an 80% chance the AVM will occlude by three years therefore18 months also marks the half way mark to goal of being AVM free.
Our entire family is officially on Holidays until January 7th. A well deserved break for John who has not stopped moving in months (maybe years). Though there is no such thing as a real vacation when you live on a farm, we will definitely be moving in a much slower pace.
Our family has many goals for 2013 and I am hoping to get some of the vision on paper very soon.
Everything seems more real when it's on paper.
A working work plan, a dream board, a wish list, a Pinterest Board ...
It may read a little like this;
- Design and build a green house - the trusses are already here. Fishy, fishy, fishy to be incorporated.
- Design and build a big barn - the trusses are already here. Moo, baa, lalala
- Re-fence and electrify the pasture - the fence and wire are already here.
- Decide where the new chicken coop is going to be - permanently. And really decide what type of hens I want to live there. I change my mind on both daily. cluck, cluck, cluck and cock-a-doodle-doo
- Turkeys.... gobble, gobble. gobble.
- Secure some more weaners for early spring. oink, oink, oink.
- Design an orchard that includes more bee hives. buzzzzzzzz
xo
Monday 5 November 2012
Whats on my mind?
If you really know me you will know I have very strong opinions. Having a brain injury, as a result of Gamma not the AVM, hasn't changed that. However, now my filter is bent and slightly broken so I'm not as tactful as I once was. Does it bother me? Occasionally. Other times not at all. Some people need to be shook into reality about me, us and whats going on in our community and beyond.
I have recently discovered that some people also assume, since I have a brain injury, I must also be crazy or no longer intelligent. For the record that is false. (Well maybe I'm a little crazy with genetics and all. We embrace it). I'm still very knowledgeable but sometimes it's harder to process what I want to say and communicate effectively. I can write though. Here I am.
If I can accurately predict my future I will say you are going to see a lot less public acting on my part. I am tired of pretending all is well when it is not. What you won't see is me posting about it on Facebook. I will still continue to be very active on our BLACKberry Fields fan page and share information. I love our farming community; it really is my happy place. I will still use FB messenger to communicate with my friends. I will still participate with private groups I belong to.
However, I will not be sharing what I'm up to, how I'm doing or the universal question "What's on my mind?". Facebook enables people to pretend they are actively involved with each other based solely on daily (sometimes hourly) status updates. I am guilty as well. I have decided I need more.
I intend to be much more active on this blog. It will be unfiltered so if you really want to know whats on my mind this is where you will need to look. Keep in mind before you subscribe the following user tips:
PS - I also love Pinterest so I hang out there frequently.
I have recently discovered that some people also assume, since I have a brain injury, I must also be crazy or no longer intelligent. For the record that is false. (Well maybe I'm a little crazy with genetics and all. We embrace it). I'm still very knowledgeable but sometimes it's harder to process what I want to say and communicate effectively. I can write though. Here I am.
If I can accurately predict my future I will say you are going to see a lot less public acting on my part. I am tired of pretending all is well when it is not. What you won't see is me posting about it on Facebook. I will still continue to be very active on our BLACKberry Fields fan page and share information. I love our farming community; it really is my happy place. I will still use FB messenger to communicate with my friends. I will still participate with private groups I belong to.
However, I will not be sharing what I'm up to, how I'm doing or the universal question "What's on my mind?". Facebook enables people to pretend they are actively involved with each other based solely on daily (sometimes hourly) status updates. I am guilty as well. I have decided I need more.
I intend to be much more active on this blog. It will be unfiltered so if you really want to know whats on my mind this is where you will need to look. Keep in mind before you subscribe the following user tips:
- I will run this blog like a monarchy where I reign as queen. You can comment your opinions as you wish but I will have the last say. (Refer to my last post about writing my truth.)
- I will write about gender bias and feminism because it is very important to me.
- I will write opinion pieces about parenting because that is what I know.
- I will write about farming and sustainability because that is where we are going.
- I will write about what I really think about the medical community and you may not like it or want to hear it... It will give you something to think about and then you can seek your own truth.
- I will write about my history and how I got to be who I am.
- I may ramble because sometimes that's whats happening in my head.
PS - I also love Pinterest so I hang out there frequently.
Saturday 3 November 2012
Before we go any further...
Everything I write belongs to me.
I own it.
Whether it be my thoughts, feelings, perspective, my opinion or other wise, it is my reality.
It's not open for debate.
It's my story.
How you interrupt my words it is up to you.
How it makes you feel isn't about me.
It's about you.
Your story.
Your feelings.
If something I have written makes you uncomfortable, ask yourself why.
I don't write to hurt others.
I write to give a voice to my truth.
It is my outlet.
More and more often I find myself censoring my words.
I feel like I can't be authentic in my own space.
Today that stops.
I have acknowledged repeatedly on this blog and in person how grateful I am to those who have loved and supported us this past couple of years.
Many relationships and friendships have forged and solidified. We are very fortunate indeed.
To have people question my gratitude is annoying in the very least.
Disappointing and yet very predictable at best.
If we haven't accepted every offer of support and help there is a reason.
Don't question it. Don't try to make me feel ungrateful.
I know who I am, what I need and when I need it.
Thursday 11 October 2012
The house on the hill
Recently a good friend asked me if we ever thought about moving. It's a good question.
We live rather rural. We have neighbours but most of them are seasonal. The closest, some what adequate, grocery store is at least 15 minutes away. The kids go to school and participate in dance and karate 30 minutes away. Shopping and a wider variety of recreational opportunities are an hours drive. My team of doctors just a three hour road trip.
Still, the answer was pretty simple. No.
Later on, as always, I reflected.
Why not move?
Would our life not be so much simpler if we lived closer to the village? a city?
I would no longer be so isolated.
I would regain some independence.
I could walk everywhere and not depend on others to drive me.
I would be closer to my family and have more access to my friends.
I could take a taxi to the grocery store and local medical appointments.
John would have far less responsibility and burden.
Same question. Same answer - no.
We would be miserable!
When John and I moved in together, 17 years ago, we began designing floor plans for the house we would someday build. A lot of thought, time, energy and dreams went into those tentative plans.
Nine years later the foundation was poured. Today its our reality, our home.
The land we built on is a mix of pasture and forest. It borders on a a quiet road, more pasture and a large beaver pond. Today we are still designing floor plans. This time for green houses, bunkies and barns. We dream about gardens, aquaponics and turkeys. We talk endlessly about sustainability and homesteading. Of leaving something behind for future generations. BLACKberry Fields.
Pretty picture isn't it?
Even prior to getting sick I claimed to be born in the wrong century. I love nothing more than hanging laundry on the clothes line, reading a great book, finding a great new recipe and digging in the garden. I lose time daily watching the chickens and talking to the pigs. The place is slower but there is still plenty to do. Lots to keep my brain active and body alive.
I don't deny that moving would make life more convenient sometimes.
However, I don't think we could ever trade quality of life for convenience.
I have probably said it here before but for the first time I feel like we are living very authentically.
I am only as isolated as I want or need to be.
I am still very independent but I have to be more creative in order to achieve it.
Even if I lived in town I wouldn't be able to walk everywhere unless I had a shadow. It's not safe for me to travel solo in the event I lose the use of my leg or my sight.
I have close friends that live near by. We also have a steady stream of people who visit our little farm to purchase eggs and visit the animals.
Family can find me.
John willingly gets us everywhere we need to go.
We have learned to ask for help when we need to.
This is what real looks like.
We live rather rural. We have neighbours but most of them are seasonal. The closest, some what adequate, grocery store is at least 15 minutes away. The kids go to school and participate in dance and karate 30 minutes away. Shopping and a wider variety of recreational opportunities are an hours drive. My team of doctors just a three hour road trip.
Still, the answer was pretty simple. No.
Later on, as always, I reflected.
Why not move?
Would our life not be so much simpler if we lived closer to the village? a city?
I would no longer be so isolated.
I would regain some independence.
I could walk everywhere and not depend on others to drive me.
I would be closer to my family and have more access to my friends.
I could take a taxi to the grocery store and local medical appointments.
John would have far less responsibility and burden.
Same question. Same answer - no.
We would be miserable!
When John and I moved in together, 17 years ago, we began designing floor plans for the house we would someday build. A lot of thought, time, energy and dreams went into those tentative plans.
Nine years later the foundation was poured. Today its our reality, our home.
The land we built on is a mix of pasture and forest. It borders on a a quiet road, more pasture and a large beaver pond. Today we are still designing floor plans. This time for green houses, bunkies and barns. We dream about gardens, aquaponics and turkeys. We talk endlessly about sustainability and homesteading. Of leaving something behind for future generations. BLACKberry Fields.
Pretty picture isn't it?
Even prior to getting sick I claimed to be born in the wrong century. I love nothing more than hanging laundry on the clothes line, reading a great book, finding a great new recipe and digging in the garden. I lose time daily watching the chickens and talking to the pigs. The place is slower but there is still plenty to do. Lots to keep my brain active and body alive.
I don't deny that moving would make life more convenient sometimes.
However, I don't think we could ever trade quality of life for convenience.
I have probably said it here before but for the first time I feel like we are living very authentically.
I am only as isolated as I want or need to be.
I am still very independent but I have to be more creative in order to achieve it.
Even if I lived in town I wouldn't be able to walk everywhere unless I had a shadow. It's not safe for me to travel solo in the event I lose the use of my leg or my sight.
I have close friends that live near by. We also have a steady stream of people who visit our little farm to purchase eggs and visit the animals.
Family can find me.
John willingly gets us everywhere we need to go.
We have learned to ask for help when we need to.
This is what real looks like.
Tuesday 9 October 2012
If you love me...
If you love me...
- See beyond the humor and sarcasm.
- Be kind to me. I'm very sensitive.
- Listen to me even when I am hard to understand. I'm still intelligent.
- Don't assume anything. You really have no idea unless you are also Monster fighting.
- Please don't compare your experience with mine. This is like nothing you have ever experienced and it can not be compared to other diseases or disorders. When you do that it devalues your experience and mine. (I may be repeating myself)
- Know that I am not a text book case study. Nothing that you have read is even remotely close. I am real. My journey is unique to me.
- Don't pretend you understand when you don't. Ask me questions.
- Be patient. I can tell when you are not and it hurts my feelings.
- Respect my choices even when you don't agree with them.
- Support me without conditions or a timeline.
- Love me even when I am not very lovable.
- Be my friend and remember I can still be yours.
- Acknowledge I have limitations but I try very hard. Everyday.
- Remember who I once was. I do.
- Respect who I am now.
- Note I am trying.
- Try harder.
- Be a good friend. I can still listen.
- Be patient and respectful of your feelings.
- Try and control my frustration and anger.
- Try extra hard to think before I speak (or type).
- Recognize this is scary and challenging for you too.
- Acknowledge you are doing your best.
- Love you back.
Monday 8 October 2012
Falling into Fall - Literally
Our children have been back to school for about six weeks. Everyone is settling nicely into their new schools, classrooms, activities and routines. I miss their company but I welcome the silence. It's the first time since becoming a parent I was happy to see my children return to school and it broke my heart to admit it, especially out loud.
During the past six weeks I could have written several blog posts but not one of them would have been nice. I have heard myself say several times recently that if I don't remain angry then I will start to cry. If I start to cry I may never stop. It's a short fall.
Did you know I spend all day most days alone but its not safe for me to be alone in public?
For a woman who is fiercely independent that is huge.
My brain to mouth filter is broken. I swear more than a pirate and say what ever, when ever it comes to mind. My friends accept that and therefore me. Our children definitely have a more colourful vocabulary but are quick to scold me when required. At times I am insensitive and unkind to the people I love the most. I hope they know that is not my intent, ever.
I apologize (kind of) to the well meaning family member who called and claimed she thought of me often during the past 2 years of zero contact. I'm glad she was strong enough to accept my response through my blind rage. I hope she shared my thoughts with other members of the family. Two things will happen as a result. I will stop receiving unwanted, guilt dripping telephone calls (too little way too late) and John will start getting the support he so desperately needs and deserves.
** PSA - for anyone who loves someone who is suffering the worse possible thing you can do is tell them you think about them all the time but then never act on those thoughts. Send a text, email, pick up the phone, tell them you love them - do something. **
I continue to wander from symptom to side effect aimlessly. Daily seizure activity is normal despite my high dosage of anti-convulsants. No answers to why or how much longer this will go on are forth coming. If I ever do have a stroke I will probably never recognize it for what it is because my face and arm are always numb. The clinic where I received treatment for my AVM appear to be uninterested in my new limitations and abilities. As long as their treatment plan is on track they are pleased. In an effort to preserve my remaining sanity I have asked my family physician to advocate on my behalf. Maybe yet another opinion is required.
We have also been in touch with Sick Kids Hospital and a Specialist there will be taking the lead on HHT testing for our entire family. I'm tired of waiting for answers but the thought of further trips to the hospital is exhausting. The thought of more testing, procedures and the 50% possibility of both the girls also having this terrible disorder leaves me paralyzed with fear.
John's mother has recently been diagnosed with brain cancer and has been scheduled for a craniotomy and followed by full brain radiation starting next week. Once again my husband will sit alone in a hospital waiting for neurosurgeons and radiologists to determine fate of a woman he loves.
It doesn't seem fare that one man should carry such burden. He is the strongest man I know. I am grateful everyday he is mine. Despite more than a year full of frustration, grief and hardship he still carries on without complaint. He has accomplished so much professionally and here on our farm. I am so very proud of him.
** John's Mother passed away exactly two months post diagnosis and 1 month after having the tumor removed from her brain. (1/1/13)
During the past six weeks I could have written several blog posts but not one of them would have been nice. I have heard myself say several times recently that if I don't remain angry then I will start to cry. If I start to cry I may never stop. It's a short fall.
Did you know I spend all day most days alone but its not safe for me to be alone in public?
For a woman who is fiercely independent that is huge.
My brain to mouth filter is broken. I swear more than a pirate and say what ever, when ever it comes to mind. My friends accept that and therefore me. Our children definitely have a more colourful vocabulary but are quick to scold me when required. At times I am insensitive and unkind to the people I love the most. I hope they know that is not my intent, ever.
I apologize (kind of) to the well meaning family member who called and claimed she thought of me often during the past 2 years of zero contact. I'm glad she was strong enough to accept my response through my blind rage. I hope she shared my thoughts with other members of the family. Two things will happen as a result. I will stop receiving unwanted, guilt dripping telephone calls (too little way too late) and John will start getting the support he so desperately needs and deserves.
** PSA - for anyone who loves someone who is suffering the worse possible thing you can do is tell them you think about them all the time but then never act on those thoughts. Send a text, email, pick up the phone, tell them you love them - do something. **
I continue to wander from symptom to side effect aimlessly. Daily seizure activity is normal despite my high dosage of anti-convulsants. No answers to why or how much longer this will go on are forth coming. If I ever do have a stroke I will probably never recognize it for what it is because my face and arm are always numb. The clinic where I received treatment for my AVM appear to be uninterested in my new limitations and abilities. As long as their treatment plan is on track they are pleased. In an effort to preserve my remaining sanity I have asked my family physician to advocate on my behalf. Maybe yet another opinion is required.
We have also been in touch with Sick Kids Hospital and a Specialist there will be taking the lead on HHT testing for our entire family. I'm tired of waiting for answers but the thought of further trips to the hospital is exhausting. The thought of more testing, procedures and the 50% possibility of both the girls also having this terrible disorder leaves me paralyzed with fear.
John's mother has recently been diagnosed with brain cancer and has been scheduled for a craniotomy and followed by full brain radiation starting next week. Once again my husband will sit alone in a hospital waiting for neurosurgeons and radiologists to determine fate of a woman he loves.
It doesn't seem fare that one man should carry such burden. He is the strongest man I know. I am grateful everyday he is mine. Despite more than a year full of frustration, grief and hardship he still carries on without complaint. He has accomplished so much professionally and here on our farm. I am so very proud of him.
** John's Mother passed away exactly two months post diagnosis and 1 month after having the tumor removed from her brain. (1/1/13)
Saturday 11 August 2012
Coping Techniques - AVM Style
My family is pretty open. We talk, a lot, about everything.
There are no secrets on the hill; been there, done that and do not wish to repeat the experience.
John and I have been living with my monster, aka AVM, for about 20 months; 14 post Gamma. Our children, extended family and friends about 18 months. We still have a long ways to go.
I can't always hide how I'm feeling physically because sometimes it is obvious, despite my excellent acting ability. We talk about my symptoms and side effects regularly. We have plans in place in the event of an emergency.
What we haven't talked about much is how it's effecting them.
Obviously there has been an impact. I know longer drive so I can't always be or get to where we need/want to be. I know longer work so there is less income. It also means that John is working more. I am home all the time and that has pros and cons. I can't always be mentally or physically available to them like I have been or would like to be. When they are in school it is less noticeable. We compensate and juggle the best we can but we are not always successful. There is lots of planning and little spontaneity.
So this week I took an opportunity to find out whats going on with them. How they are really feeling. What came out was they are afraid. Afraid I will have a stroke, afraid I will die, afraid of more change, afraid we will have no money, afraid of the unknown. I'm afraid too.
What also became evident was how they are coping with their fears.
Humor was at the top of the list closely followed by sarcasm. That makes sense considering that's exactly how John and I are coping. I personally feel that this is a great coping skill. When life doesn't make sense and there are no answers joke about it. It can't hurt.
Avoidance - Admittedly our children missed a lot of school last year. Some days it was just easier for them to be home. I understand because I sometimes avoid social situations as well. D chose not to participate in some of her favourite extra curricular activities. At the time we accepted it but now I realize that she was avoiding people. D and I are often alone together in public. We often get stopped and people want to know the ins and outs of my medical status. They often ask personal questions and I often respond. She was tired of it and opted out.
Physical Symptoms - It's hard to ignore the physical symptoms that keep popping up. B and I both have very rare serious disorders. When my family complains about headaches, chest pains, stomach aches, etc etc we have to listen. We also have so much more work to do when it comes to further medical testing. My job is to put their mind at ease. Headaches could be from lack of sleep or not drinking enough water. Chest pains could be feeling worried or anxious about something.
Emotional Responses - Fear often manifests it self by change in appetite, sleep disruption, frustration and anger. We are all, at times, a little angry. Let face it; this sucks. It's how we deal with the anger that's important. Yelling, name calling, bull dozing, rudeness, poor attitude is all shut down pretty quickly. My experience is that a physical activity is required to get rid of some of the negative energy. Yes I have three Karate brown belts living with me. Case in point.
After thinking about it I compiled a list of techniques that we are using to help our children cope with their fears. At no time do I under mind their fear or tell them not to be afraid. This is scary.
- We still social story almost everything. It's a useful techniques for all children not just the exceptional. If they know what to expect it makes the situation easier.
- We encourage them to talk to us or each other about how they are feeling.
- We have regular medical check ups to reassure they are in good health. We listen to their physical complaints and concerns. We will be following up with gentic testing.
- We eat well and encourage lots of physical activity.
- We try and maintain a routine. Everyone has regular chores and responsibilities.
- We have down time to play and relax.
- We spend more time enjoying our community and appreciating what's in our own neighbourhood.
- We talk about being brave and "full of awesome".
- We have asked for help from friends, family, doctors, teachers and social supports when we have needed it.
- We offer reassurance when ever we can.
- Above all we love and accept each other, even when it's hard.
There are no secrets on the hill; been there, done that and do not wish to repeat the experience.
John and I have been living with my monster, aka AVM, for about 20 months; 14 post Gamma. Our children, extended family and friends about 18 months. We still have a long ways to go.
I can't always hide how I'm feeling physically because sometimes it is obvious, despite my excellent acting ability. We talk about my symptoms and side effects regularly. We have plans in place in the event of an emergency.
What we haven't talked about much is how it's effecting them.
Obviously there has been an impact. I know longer drive so I can't always be or get to where we need/want to be. I know longer work so there is less income. It also means that John is working more. I am home all the time and that has pros and cons. I can't always be mentally or physically available to them like I have been or would like to be. When they are in school it is less noticeable. We compensate and juggle the best we can but we are not always successful. There is lots of planning and little spontaneity.
So this week I took an opportunity to find out whats going on with them. How they are really feeling. What came out was they are afraid. Afraid I will have a stroke, afraid I will die, afraid of more change, afraid we will have no money, afraid of the unknown. I'm afraid too.
What also became evident was how they are coping with their fears.
Humor was at the top of the list closely followed by sarcasm. That makes sense considering that's exactly how John and I are coping. I personally feel that this is a great coping skill. When life doesn't make sense and there are no answers joke about it. It can't hurt.
Avoidance - Admittedly our children missed a lot of school last year. Some days it was just easier for them to be home. I understand because I sometimes avoid social situations as well. D chose not to participate in some of her favourite extra curricular activities. At the time we accepted it but now I realize that she was avoiding people. D and I are often alone together in public. We often get stopped and people want to know the ins and outs of my medical status. They often ask personal questions and I often respond. She was tired of it and opted out.
Physical Symptoms - It's hard to ignore the physical symptoms that keep popping up. B and I both have very rare serious disorders. When my family complains about headaches, chest pains, stomach aches, etc etc we have to listen. We also have so much more work to do when it comes to further medical testing. My job is to put their mind at ease. Headaches could be from lack of sleep or not drinking enough water. Chest pains could be feeling worried or anxious about something.
Emotional Responses - Fear often manifests it self by change in appetite, sleep disruption, frustration and anger. We are all, at times, a little angry. Let face it; this sucks. It's how we deal with the anger that's important. Yelling, name calling, bull dozing, rudeness, poor attitude is all shut down pretty quickly. My experience is that a physical activity is required to get rid of some of the negative energy. Yes I have three Karate brown belts living with me. Case in point.
After thinking about it I compiled a list of techniques that we are using to help our children cope with their fears. At no time do I under mind their fear or tell them not to be afraid. This is scary.
- We still social story almost everything. It's a useful techniques for all children not just the exceptional. If they know what to expect it makes the situation easier.
- We encourage them to talk to us or each other about how they are feeling.
- We have regular medical check ups to reassure they are in good health. We listen to their physical complaints and concerns. We will be following up with gentic testing.
- We eat well and encourage lots of physical activity.
- We try and maintain a routine. Everyone has regular chores and responsibilities.
- We have down time to play and relax.
- We spend more time enjoying our community and appreciating what's in our own neighbourhood.
- We talk about being brave and "full of awesome".
- We have asked for help from friends, family, doctors, teachers and social supports when we have needed it.
- We offer reassurance when ever we can.
- Above all we love and accept each other, even when it's hard.
Friday 3 August 2012
Stages of Grief - The AVM Edition
I spoke with my friend Angie on the phone last night. I enjoy talking to her. She always makes me feel like my opinion and thoughts matter. That I am valued and important to her.
We chatted about family, her current work project (very exciting) and as always food, farming and sustainability. When our conversation rolled around to my current state of health she asked me an important question. "Are you angry?" Nobody ever asks me how I "feel" emotionally. Everyone wants information about my side effects. Like they have something to compare them too??
I am sure most people are familiar with the stages of grief. I think that is how I can best explain what I feel. Keep in mind that its not a brief visit to each step. I am constantly climbing up and down through the stages because that's my life.
Denial - What AVM? What brain surgery?
Denial is a useful coping technique especially in public but it is not terribly sustainable. I am a terrific actress. I can pretend all is well when I need to. Most of the time my body and brain won't betray me. I'm well medicated when the event calls for it. Denial is usually very short lived because I can't ignore reality more than an evening.
Anger - Why me? Why now? What if?
Am I angry? Yes. All the time? No. It ebbs and flows. It is often hormone driven. I will always wonder what if I never knew? What if I had never had surgery? How life would be different if ....
I get angry with the medical community for playing down the severity and risks associated with my AVM and treatment. I get angry at myself for acting in fear. I get angry at friends and family who either pretend nothing has changed or offer false hope.
Bargaining - Dear God...
My relationship with God is private but I will say I speak to him much more often these days.
Depression - Why bother? I give up!
It would be very easy for me to slip into a very dark place. I stand on the edge of it often. My family has a long history of poor mental health. It would be a very short step to disconnect from the world. I am already isolated and have lost my freedom and independence.
I am fortunate that I am very self aware. I am able to pull myself back because I understand that it's completely normal to be sad, regretful and fear of the unknown. Experiencing and really feeling these emotions are how you get to the final stage of grief.
Acceptance - It's going to be okay. I will make the most of each day.
I can confidently say I am getting use to my new normal. Do I wish it was different? Absolutely, but there is more peace now. I really do enjoy having a farm. If I hadn't been diagnosed we wouldn't be here - yet. I do not miss my previous job, but I do miss the people. I have a deeper appreciation for my community and my role in it than I did before. I value my relationships with friends and family more.
Acceptance doesn't mean I have to love it. It just means that I can accept the reality of the situation and have the courage to move forward.
We chatted about family, her current work project (very exciting) and as always food, farming and sustainability. When our conversation rolled around to my current state of health she asked me an important question. "Are you angry?" Nobody ever asks me how I "feel" emotionally. Everyone wants information about my side effects. Like they have something to compare them too??
I am sure most people are familiar with the stages of grief. I think that is how I can best explain what I feel. Keep in mind that its not a brief visit to each step. I am constantly climbing up and down through the stages because that's my life.
Denial - What AVM? What brain surgery?
Denial is a useful coping technique especially in public but it is not terribly sustainable. I am a terrific actress. I can pretend all is well when I need to. Most of the time my body and brain won't betray me. I'm well medicated when the event calls for it. Denial is usually very short lived because I can't ignore reality more than an evening.
Anger - Why me? Why now? What if?
Am I angry? Yes. All the time? No. It ebbs and flows. It is often hormone driven. I will always wonder what if I never knew? What if I had never had surgery? How life would be different if ....
I get angry with the medical community for playing down the severity and risks associated with my AVM and treatment. I get angry at myself for acting in fear. I get angry at friends and family who either pretend nothing has changed or offer false hope.
Bargaining - Dear God...
My relationship with God is private but I will say I speak to him much more often these days.
Depression - Why bother? I give up!
It would be very easy for me to slip into a very dark place. I stand on the edge of it often. My family has a long history of poor mental health. It would be a very short step to disconnect from the world. I am already isolated and have lost my freedom and independence.
I am fortunate that I am very self aware. I am able to pull myself back because I understand that it's completely normal to be sad, regretful and fear of the unknown. Experiencing and really feeling these emotions are how you get to the final stage of grief.
Acceptance - It's going to be okay. I will make the most of each day.
I can confidently say I am getting use to my new normal. Do I wish it was different? Absolutely, but there is more peace now. I really do enjoy having a farm. If I hadn't been diagnosed we wouldn't be here - yet. I do not miss my previous job, but I do miss the people. I have a deeper appreciation for my community and my role in it than I did before. I value my relationships with friends and family more.
Acceptance doesn't mean I have to love it. It just means that I can accept the reality of the situation and have the courage to move forward.
Friday 20 July 2012
Dropping an acronym and other medical news...
Wednesday was clinic day for both Brenden and I. I had postponed both of our appointments to July to help ease some of the craziness surrounding the previous month. John and I have the trip down to a fine science as our confidence grows regularly travelling to, around and from Toronto. Who knew?
This week we are pleased to share that B is no longer a heart patient. Ablation surgery has been considered a success and the chance of an accessory pathway in his heart reoccurring now, four months post op, is extremely rare. He will have an ECG at the one year mark to confirm but at this point we can confidently say he no longer has Wolffe Parkinson White Syndrome. Thus dropping WPW from the long list of acronyms that follow our names.
It has been absolutely amazing to watch this young man change before our eyes. He has become so much more active, strong and confident since surgery. We are very proud of him. We celebrated with a cake.
My Neurology appointment marked my one year anniversary of Gamma Knife Surgery. Dr. S was positively beaming when he seen me. As I'm sure I have mentioned before the goal of Gamma is to destroy the AVM. It appears to be working therefore the clinic can claim success. The draining vein is occluding and eventually will seal off completely destroying the AVM. When the AVM dies my risk of stroke diminishes. That's the good news but it's hard to get too excited about that when my quality of life has been altered significantly.
When I asked the countless questions on my mind I always received a variety of the same response.
"I don't know...."
Why am I losing my vision in my left eye?
Why am I still having so many seizures (daily in varying degrees)?
Why are they changing from partial focal to absent?
Why are the seizures starting to cross the mid line?
If the avm is starting to occlude then why can I still hear it?
Why am I still experiencing asphasia? (communication problem NOT intelligence)
Why do I have episodes of muscle weakness and loss mobility on my right side?
When will it start to get better???
"I don't know." Dr. S
Is there going to be permanent brain damage? Sadly, yes from radiation. Approximately 1 cm around the AVM in my left frontal lobe. How significant, we don't know. Once brain cells die they can not regenerate; it's forever. Yet the brain has an amazing ability to make accommodations. Will the seizures ever stop? We don't know, hopefully. We are optimistic that they will be better controlled by medication eventually.
In the mean time I have been instructed to keep in touch via email and to control my environment to help diminish the severity of my symptoms. There was no discussion about getting my drivers license back. For those who keep telling me to be optimistic about that I'm asking you to start being realistic. Will I be looking for a new job anytime in the near future? No.
Next step:
Genetic testing for HHT.
But first I am going to enjoy the summer with our children.
This week we are pleased to share that B is no longer a heart patient. Ablation surgery has been considered a success and the chance of an accessory pathway in his heart reoccurring now, four months post op, is extremely rare. He will have an ECG at the one year mark to confirm but at this point we can confidently say he no longer has Wolffe Parkinson White Syndrome. Thus dropping WPW from the long list of acronyms that follow our names.
It has been absolutely amazing to watch this young man change before our eyes. He has become so much more active, strong and confident since surgery. We are very proud of him. We celebrated with a cake.
My Neurology appointment marked my one year anniversary of Gamma Knife Surgery. Dr. S was positively beaming when he seen me. As I'm sure I have mentioned before the goal of Gamma is to destroy the AVM. It appears to be working therefore the clinic can claim success. The draining vein is occluding and eventually will seal off completely destroying the AVM. When the AVM dies my risk of stroke diminishes. That's the good news but it's hard to get too excited about that when my quality of life has been altered significantly.
When I asked the countless questions on my mind I always received a variety of the same response.
"I don't know...."
Why am I losing my vision in my left eye?
Why am I still having so many seizures (daily in varying degrees)?
Why are they changing from partial focal to absent?
Why are the seizures starting to cross the mid line?
If the avm is starting to occlude then why can I still hear it?
Why am I still experiencing asphasia? (communication problem NOT intelligence)
Why do I have episodes of muscle weakness and loss mobility on my right side?
When will it start to get better???
"I don't know." Dr. S
Is there going to be permanent brain damage? Sadly, yes from radiation. Approximately 1 cm around the AVM in my left frontal lobe. How significant, we don't know. Once brain cells die they can not regenerate; it's forever. Yet the brain has an amazing ability to make accommodations. Will the seizures ever stop? We don't know, hopefully. We are optimistic that they will be better controlled by medication eventually.
In the mean time I have been instructed to keep in touch via email and to control my environment to help diminish the severity of my symptoms. There was no discussion about getting my drivers license back. For those who keep telling me to be optimistic about that I'm asking you to start being realistic. Will I be looking for a new job anytime in the near future? No.
Next step:
Genetic testing for HHT.
But first I am going to enjoy the summer with our children.
Thursday 28 June 2012
June Highlights
So it isn't a secret to most that I was not looking forward to the month of June.
June tends to be rather busy here and every other household who has school age children.
I have personally been dreading it since about April.
Why schools pack in every possible opportunity into the last four weeks baffles me.
Don't get me wrong, I'm glad our children have gotten to experience so many wonderful class trips and extra special days but why not try spreading them out through the year.
We can fly kites in October. Visit Ottawa in May. Make scrapbooks all year long.
But look here it is the end of the month and we all survived.
John knew it was possible and I need to learn to never doubt him.
I will be starting July in spoon deprivation but I am optimistic.
I can now release the breath I have been holding.
Here are our highlights...
June tends to be rather busy here and every other household who has school age children.
I have personally been dreading it since about April.
Why schools pack in every possible opportunity into the last four weeks baffles me.
Don't get me wrong, I'm glad our children have gotten to experience so many wonderful class trips and extra special days but why not try spreading them out through the year.
We can fly kites in October. Visit Ottawa in May. Make scrapbooks all year long.
But look here it is the end of the month and we all survived.
John knew it was possible and I need to learn to never doubt him.
I will be starting July in spoon deprivation but I am optimistic.
I can now release the breath I have been holding.
Here are our highlights...
Building BLACKberry Fields and John Black Carpentry
Amy preforms in the Heritage Ballet Spring Recital
Dana at her first Track and Field Meet in Haliburton
Amy and Brenden receive their brown belts in Karate
Amy on the low ropes at Pinecrest YMCA camp
Brenden visits our nations capital
Dana visits Settlers Village
Brenden Graduates the DARE program at JDHES
Amy Graduates grade 8 from JDHES
Dana's last day ever at SBES
This family welcomes the summer holidays...
PS if you are not familar with The Spoon Theory click the link above. It will help you understand what it really feels like to live with an invisible illness.
Friday 22 June 2012
The story we tell ourselves...
"We are each the story we tell ourselves."
I'm not sure when I first heard that sentence but it rings true to me in so many ways.
If a person tells them self the same mantra over and over again,
it becomes their truth and the story they tell others.
If I tell myself I am ill then I live like I am ill.
If I tell myself to live to the best of my ability,
I have a much more positive outlook each day.
I remember much of my past and I am living my present.
Sometimes I am told stories of my youth by others.
I always find it interesting to listen to their recollection of shared experiences.
Our different perceptions of childhood and high school.
I am lucky because John shares many of my memories.
If someone makes a statement that doesn't mesh with my memory,
John can often fill in the holes or help clarify their personal spin.
As our daughter leaves behind elementary school and enters high school,
I am reminded of my own personal history and the transition from little to big.
Some friendships, that were important in public school, solidified in high school.
While others were left behind. Some with regret and others with a sigh of relief.
Boys who once were coveted and fought over were forgotten.
Others boys, who were largely unnoticed or unknown, became exciting and intriguing.
New friendships were forged based on common interests and beliefs.
Past problems and disagreements were largely forgotten for they no longer held relevance.
As I grew older and presumably wiser I began to treasure the people who were important to me.
People who treated me like my goals, dreams and beliefs were important to them.
I let go of the people who no longer felt connected to. Not with malice just a farewell.
I have been very blessed with so many wonderful friendships over my lifetime.
Some brief, some permanent but all important for the lessons they taught me.
I recently had dinner with some of my favourite families.
We each come from completely different places but connect perfectly.
Together we can laugh, talk, debate and genuinely enjoy each other.
Children, health, food, community and friendship bring and keep us together.
Each of us telling a similar story.
I'm not sure when I first heard that sentence but it rings true to me in so many ways.
If a person tells them self the same mantra over and over again,
it becomes their truth and the story they tell others.
If I tell myself I am ill then I live like I am ill.
If I tell myself to live to the best of my ability,
I have a much more positive outlook each day.
I remember much of my past and I am living my present.
Sometimes I am told stories of my youth by others.
I always find it interesting to listen to their recollection of shared experiences.
Our different perceptions of childhood and high school.
I am lucky because John shares many of my memories.
If someone makes a statement that doesn't mesh with my memory,
John can often fill in the holes or help clarify their personal spin.
As our daughter leaves behind elementary school and enters high school,
I am reminded of my own personal history and the transition from little to big.
Some friendships, that were important in public school, solidified in high school.
While others were left behind. Some with regret and others with a sigh of relief.
Boys who once were coveted and fought over were forgotten.
Others boys, who were largely unnoticed or unknown, became exciting and intriguing.
New friendships were forged based on common interests and beliefs.
Past problems and disagreements were largely forgotten for they no longer held relevance.
As I grew older and presumably wiser I began to treasure the people who were important to me.
People who treated me like my goals, dreams and beliefs were important to them.
I let go of the people who no longer felt connected to. Not with malice just a farewell.
I have been very blessed with so many wonderful friendships over my lifetime.
Some brief, some permanent but all important for the lessons they taught me.
I recently had dinner with some of my favourite families.
We each come from completely different places but connect perfectly.
Together we can laugh, talk, debate and genuinely enjoy each other.
Children, health, food, community and friendship bring and keep us together.
Each of us telling a similar story.
Monday 18 June 2012
Balance - Stephanie VS The Monster
There is so much I want to do. There is so much I need to do.
We are building our farm, BLACKberry Fields much quicker than I ever imagined.
The timing was right and we have to go with it.
I am organizing and reorganizing a household with three very busy children.
The month of June has been absolutely insane. Maybe thats why I feel like I am struggling so much.
I am trying to help John with his ever growing business, John Black Carpentry
I try but sometimes I'm not very successful or helpful.
When I work hard and complete tasks it gives me a great sense of accomplishment.
My soul and spirit needs that. My sanity needs that.
After several days of success I can be guaranteed several days of forced rest.
Balance
My monster has its own, very different agenda.
It likes to keep me awake with a constant woosh in my head.
If it doesn't get my attention right away it only gets louder.
It limits the use of my right arm and sometime leg so even small tasks take so much longer.
At times it makes it difficult to read, focus or string a sentence together.
Sometimes I can hear a person talking but I don't comprehend the words or their meaning; as if they are speaking in a different language.
It is a constant dull ache on the left side and sharp stabbing pains the right side of my brain.
Just when I think the monster is at rest is rattles my body with a seizure or quite literally knocks me out for a few hours.
Balance
This week is my one year anniversary of Gamma Knife Surgery. Yesterday I had another MRI to get some good images of the AVM/Monster. We are looking to see if the edema has dissipated and at the integrity of the vessels running to and from the AVM. Regardless of what the images show and the prognosis, I know how I feel. I'm just looking for the balance.
Friday 18 May 2012
Living history
In 1993 I was a first year college student in Peterborough. John and I had been dating for almost four years. Most weeks we would return to the Highlands driving on a less traveled route through a small village, Mount Pleasant. On the very first trip through this wee town I instantly fell in love with the breath taking view, the fields, the trees and the rolling hills. I wanted to live there.
Over the next couple of years I had become friends with a young woman who lived with her parents on a small hobby farm on the out skirts of the same city. Though I had never spent a day on a farm before I really enjoyed this little piece of heaven.
Ducks and chickens chased bugs. Sheep chewed lazily on grass. Goats climbed and chewed just about everything. This family grew and ate their own fruit and vegetables. They pasture raised their own meat. At the time I remember feeling envy and awe. It became a dream - something to aspire too - someday.
Fast forward to 2003...
John and I had been married for six years. We had two children and one on the way. We had sold our tiny house and needed a place to live - immediately. John built me my house on the hill. Not the same hill but this one was way better. Now, everyday I am surrounded with a similar beauty I had loved and longed for 10 years prior.
When we chose to build here we talked farming. In the future. We had the land but with both of us working and three children under five we severely lacked time, energy and resources.
We lived vicariously through John's parents who were returning to their roots and building a small farm. Every time we visited we enjoyed a trip to the barn to see the sheep, goats and chickens. In the summer their cattle would graze in our pasture.
As our children grew we decided it would be manageable to have a few chickens. And so our farm began.
BLACKberry Fields - Present day...
As I have mentioned before I knew the day the tractor rolled into the yard there was know turning back. Our dreams were becoming a reality and much quicker than we ever believed.
Today we have 20 laying hens and a rooster who wander the yard and 30 more on the way. Thirty other chickens will be raised for meat. Four piglets arrived last week. They are being pasture raised for their meat. A trio of lambs will arrive next week to help with the grass cutting and be sold in the fall. Two bee hives are being relocated here to expand their pollen source and provide us with honey. We are in the process of securing a cow or two.
The vegetable garden just keeps getting bigger and bigger. John will till it again tonight so I can begin to plant it this weekend. I will care for the plants through out the summer. Together we will harvest and preserve our crops.
Over the past three months John has rarely stopped moving. He works full time as a carpenter then comes home and continues to work at any number of tasks here on our farm. With the help of our oldest daughter, Amy, they have placed countless fence posts and strung hundreds of feet of fencing. As I am limited in my ability, the task of building our family farm has fallen largely on him. So with this post I want to thank him for making my, our, dreams a reality. I am grateful everyday to be sharing this amazing experience with you, our children and the friends who join us along the way. xo
Sending much love and gratitude from my piece of heaven here on the hill.
Steph xo
Over the next couple of years I had become friends with a young woman who lived with her parents on a small hobby farm on the out skirts of the same city. Though I had never spent a day on a farm before I really enjoyed this little piece of heaven.
Ducks and chickens chased bugs. Sheep chewed lazily on grass. Goats climbed and chewed just about everything. This family grew and ate their own fruit and vegetables. They pasture raised their own meat. At the time I remember feeling envy and awe. It became a dream - something to aspire too - someday.
Fast forward to 2003...
John and I had been married for six years. We had two children and one on the way. We had sold our tiny house and needed a place to live - immediately. John built me my house on the hill. Not the same hill but this one was way better. Now, everyday I am surrounded with a similar beauty I had loved and longed for 10 years prior.
 |
| Summer 2005 |
We lived vicariously through John's parents who were returning to their roots and building a small farm. Every time we visited we enjoyed a trip to the barn to see the sheep, goats and chickens. In the summer their cattle would graze in our pasture.
As our children grew we decided it would be manageable to have a few chickens. And so our farm began.
BLACKberry Fields - Present day...
 |
| Tamworth weaner |
Today we have 20 laying hens and a rooster who wander the yard and 30 more on the way. Thirty other chickens will be raised for meat. Four piglets arrived last week. They are being pasture raised for their meat. A trio of lambs will arrive next week to help with the grass cutting and be sold in the fall. Two bee hives are being relocated here to expand their pollen source and provide us with honey. We are in the process of securing a cow or two.
 |
| Amy and John installing fence posts |
Sending much love and gratitude from my piece of heaven here on the hill.
Steph xo
Wednesday 2 May 2012
State of Happiness
There is one thing I know to be true.
I am responsible for my own happiness.
When I look externally I will be disappointed.
The decisions I make will determine my state of mind.
My happiness is internal.
I really don't have to look very deep to find it.
I just have to surrender to it.
Let go of the past.
Make peace with the present.
My happiness begins with John.
It always has and always will.
The home we have created together.
The hard choices we have made.
The amazing children we share.
My happiness lies in the garden, deep in the soil, amongst the flowers.
It is inside our home, in the kitchen mixed with the ingredients of a new recipe.
It's lost in the pages of a good book. Inside my imagination.
It is at my fingertips when I dream, create and make.
It is with my friends who help me remain authentic and sane.
Happiness is here, under the surface.
Somedays it's just harder to find it.
Monday 30 April 2012
Redefining my role
I have a restless soul. I am rarely at peace with myself. I would to like blame it on the monster but that would be a lie. It is simply who I am. Having so much time alone in my head just heightens my awareness. I recently find myself circling. Thinking a little too much.
Metaphorically, I have never been one to sit around and watch paint dry. I'm always ready to start the next project. I never sit back and admire my work. Relishing in success. Patience has never been my strong suit as I always continue moving forward - dreaming, planning, creating, doing.
When my babies were small I didn't just babysit. I ran a home business and a very successful community playgroup. Always needing to do a little bit more. That role led me to a career working with families.
I have volunteered countless hours, sat on boards and worked for and with several non-profit agencies. I was never just an employee though. I had to know everything. If I was going to attach my name to a position I was going to excel at it. Be an expert.
I have always been a student. In fact, this is the first time in my adult life that I have not been actively enrolled in school. No papers to write, no assignments to complete and no exams to study for. No professor to sign off on the A+.
This is also the first time in many years I have not been an employee. No time lines, deadlines or accountability. No performance appraisal to tell me I'm on the right track and doing a good job. It is a odd feeling.
As I circle inside my head I wonder if my drive, determination, need to succeed has led me to this moment. If all the hours I have invested into others in my community has taught me the skills I will need to be successful - in my recovery and here at home. If this has been the bigger plan all along?
I need to to continue to heal. My seizures are still active but strangely I am getting use to them. I budget time for them and my recovery everyday. My new normal forces me to stop - literally. Patience is a must. I can't rush recovery. The monster has it's own agenda and I'm not privy to it.
We are building a homestead and creating a plan for sustainability. There is always much work to do. Research, planning, doing...
As I continue to circle I will redefine my role... figure out who I am.
Metaphorically, I have never been one to sit around and watch paint dry. I'm always ready to start the next project. I never sit back and admire my work. Relishing in success. Patience has never been my strong suit as I always continue moving forward - dreaming, planning, creating, doing.
When my babies were small I didn't just babysit. I ran a home business and a very successful community playgroup. Always needing to do a little bit more. That role led me to a career working with families.
I have volunteered countless hours, sat on boards and worked for and with several non-profit agencies. I was never just an employee though. I had to know everything. If I was going to attach my name to a position I was going to excel at it. Be an expert.
I have always been a student. In fact, this is the first time in my adult life that I have not been actively enrolled in school. No papers to write, no assignments to complete and no exams to study for. No professor to sign off on the A+.
This is also the first time in many years I have not been an employee. No time lines, deadlines or accountability. No performance appraisal to tell me I'm on the right track and doing a good job. It is a odd feeling.
As I circle inside my head I wonder if my drive, determination, need to succeed has led me to this moment. If all the hours I have invested into others in my community has taught me the skills I will need to be successful - in my recovery and here at home. If this has been the bigger plan all along?
I need to to continue to heal. My seizures are still active but strangely I am getting use to them. I budget time for them and my recovery everyday. My new normal forces me to stop - literally. Patience is a must. I can't rush recovery. The monster has it's own agenda and I'm not privy to it.
We are building a homestead and creating a plan for sustainability. There is always much work to do. Research, planning, doing...
As I continue to circle I will redefine my role... figure out who I am.
Wednesday 25 April 2012
Letting go...work
In an attempt to gain some control in my life I need to make some changes.
I handed in my resignation at work. I didn't have to. I chose to.
I have been on a leave of absence since the monster in my brain took hold, rattling it regularly with seizures. I had planned to go back once things settled down medically but I had a moment of true clarity. I realized that as long as I had a timeline of when I was to return I was going to remain unwell.
As a Social Worker I have never left work and simply flipped the switch and forgot about every interaction I had through out the day. Maybe some do - I do not. Every person I have ever worked with has had an impact on me. I think about them, their needs, their dreams, how I and we as a community could do more. Core competencies, best practice and developmentally appropriate are a part of my regular vernacular. Talk to me sometime and you will know this to be true.
It is ridiculous to believe that while I was on a leave of absence that I stopped caring about the people I have supported. That I was unaware of what was happening in my own community. When you live and work in a small town everything is under a microscope. I didn't seek out information; it was either completely visible or brought to my attention by a concerned community member. So though I was away I continued to care, have opinions and advocate.
Now I choose to hand back that responsibility and privilege.
A reminder from my Inner Pirate...
The swelling in my brain has left me with temporary aphasia, a communication disorder.
It does not effect my intelligence.
Don't talk to me, at me or about me like I am stupid.
Furthermore, I remember what confidentiality and in confidence means and I still practice it.
I wish the same respect be extended to me.
I handed in my resignation at work. I didn't have to. I chose to.
I have been on a leave of absence since the monster in my brain took hold, rattling it regularly with seizures. I had planned to go back once things settled down medically but I had a moment of true clarity. I realized that as long as I had a timeline of when I was to return I was going to remain unwell.
As a Social Worker I have never left work and simply flipped the switch and forgot about every interaction I had through out the day. Maybe some do - I do not. Every person I have ever worked with has had an impact on me. I think about them, their needs, their dreams, how I and we as a community could do more. Core competencies, best practice and developmentally appropriate are a part of my regular vernacular. Talk to me sometime and you will know this to be true.
It is ridiculous to believe that while I was on a leave of absence that I stopped caring about the people I have supported. That I was unaware of what was happening in my own community. When you live and work in a small town everything is under a microscope. I didn't seek out information; it was either completely visible or brought to my attention by a concerned community member. So though I was away I continued to care, have opinions and advocate.
Now I choose to hand back that responsibility and privilege.
A reminder from my Inner Pirate...
The swelling in my brain has left me with temporary aphasia, a communication disorder.
It does not effect my intelligence.
Don't talk to me, at me or about me like I am stupid.
Furthermore, I remember what confidentiality and in confidence means and I still practice it.
I wish the same respect be extended to me.
Friday 13 April 2012
Next chapter please...
GUESS WHAT?
TODAY, I QUIT MY JOB!
NO REALLY; I DID IT.
AND YOU KNOW WHAT HAPPENED?
NOTHING!
AND YOU KNOW WHAT ELSE?
I'M ALREADY HAPPIER FOR IT!
END OF ANOTHER CHAPTER.
Thursday 5 April 2012
Patient update
AVM's are considered congenital, we are born this way. In extremely rare cases Hereditary Homorrhotic Telangiectasia (tel-AN-jee-eck-TAZE-ee-ya) or HHT.
In July 2011 I was referred to a doctor who researches HHT at St. Michael's Hospital in Toronto. Given I have an AVM in my brain, some unexplained deaths and other members with AVM's in my family it was deemed necessary. While at my day long appointment I had several tests searching for more AVM's in my liver, lungs, extremities and heart. Though no more AVM's were found, during a ECHO Bubble Study they found something wrong with my heart. Since then I have been under the care of a Cardiologist. For eight months I have had several tests investigating the possibility of having Cardiomyopathy.
Yesterday was results day. I am very pleased to report I do not have it. Happy dance!!!! I met with my Cardiologist and he told me that during rest the left ventricle of my heart beats at the lower end of normal. During activity it beats normal. He told me I rocked my very awful fitness challenge. You know the test where I rode a bike, sideways, breasts exposed, having an ultrasound with a cheering section present. Fun times. My heart muscles look healthy according to my MRI, the gold star in imaging. I have been discharged from his care. Deep cleansing breath.
HHT testing continues.
Next stop of the day was to spend some quality time with my Neurosurgeon. I had an appointment with Dr. S but my Neurologist Dr. C decided to join us. Wow - two members of my team giving me there undivided attention. I thought for sure I would have the answers I desperately need.
Be warned this is were I begin to struggle.
Though I am experiencing regular seizures, joint stiffness or weakness, confusion, vision loss, loss of speech etc etc etc Dr. S is thrilled. He believes that treatment is working. Maybe, just maybe, my AVM is even gone already! Of course we won't know for certain until we see my brain again in June, but maybe.
Now don't get me wrong if my AVM atrophies and is completely gone that's great. Less chance of a homorrhotic stroke. Right? But when I questioned them further about my seizures and other side effects they seemed a little puzzled. When I asked them about alternative measures to reduce or eliminate my side effects I was told to continue taking my anticonvulsants and maybe within time we could try and wean me off them and see what happens. Those would be the same anticonvulsants that are not working now.
Thus lies my frustration.
My doctors measure success by the prospect I will, in time, be AVM free. Therefore, their treatment plan was successful. Yeah them.
I measure success by the quality of life I am going to live post AVM and Gamma.
Next stop.... Naturopath. YES, it's true :)
Now that's something I truly am excited about.
Someone who will treat all of me; not just my parts.
Sending love from the hill xo
In July 2011 I was referred to a doctor who researches HHT at St. Michael's Hospital in Toronto. Given I have an AVM in my brain, some unexplained deaths and other members with AVM's in my family it was deemed necessary. While at my day long appointment I had several tests searching for more AVM's in my liver, lungs, extremities and heart. Though no more AVM's were found, during a ECHO Bubble Study they found something wrong with my heart. Since then I have been under the care of a Cardiologist. For eight months I have had several tests investigating the possibility of having Cardiomyopathy.
Yesterday was results day. I am very pleased to report I do not have it. Happy dance!!!! I met with my Cardiologist and he told me that during rest the left ventricle of my heart beats at the lower end of normal. During activity it beats normal. He told me I rocked my very awful fitness challenge. You know the test where I rode a bike, sideways, breasts exposed, having an ultrasound with a cheering section present. Fun times. My heart muscles look healthy according to my MRI, the gold star in imaging. I have been discharged from his care. Deep cleansing breath.
HHT testing continues.
Next stop of the day was to spend some quality time with my Neurosurgeon. I had an appointment with Dr. S but my Neurologist Dr. C decided to join us. Wow - two members of my team giving me there undivided attention. I thought for sure I would have the answers I desperately need.
Be warned this is were I begin to struggle.
Though I am experiencing regular seizures, joint stiffness or weakness, confusion, vision loss, loss of speech etc etc etc Dr. S is thrilled. He believes that treatment is working. Maybe, just maybe, my AVM is even gone already! Of course we won't know for certain until we see my brain again in June, but maybe.Now don't get me wrong if my AVM atrophies and is completely gone that's great. Less chance of a homorrhotic stroke. Right? But when I questioned them further about my seizures and other side effects they seemed a little puzzled. When I asked them about alternative measures to reduce or eliminate my side effects I was told to continue taking my anticonvulsants and maybe within time we could try and wean me off them and see what happens. Those would be the same anticonvulsants that are not working now.
Thus lies my frustration.
My doctors measure success by the prospect I will, in time, be AVM free. Therefore, their treatment plan was successful. Yeah them.
I measure success by the quality of life I am going to live post AVM and Gamma.
Next stop.... Naturopath. YES, it's true :)
Now that's something I truly am excited about.
Someone who will treat all of me; not just my parts.
Sending love from the hill xo
Tuesday 3 April 2012
Food frenzies and friendship
One of things I miss the most about my pre AVM/Gamma life is my ability to network at my own will. To jump in my van and visit friends, walk around head lake, go to the grocery store or even go to work. To talk to friends, family, acquaintances or colleagues face to face. To exchange information. Thank you Mark Zuckerberg for Facebook or I would be completely insane by now.
This past Sunday John and I enjoyed the company of eight other families at our monthly "Gluten Free Food Frenzy". The group was established by my friend D and her daughter this winter in an effort to "simply share knowledge and build community around the gluten-free lifestyle by hosting a monthly feast. It is a family friendly fun and fabulous free of gluten (egg, soy,dairy, peanuts and other allergens) food fest." Month to month the attendance and location varies but each of us come to enjoy fabulous food with like minded families. Not all of us have food allergies but we all share the belief in healing our bodies with good food.
Sunday morning was rough for me. I had continual focal seizures and I was exhausted. Logic said I should stay home and sleep but I chose to go. I am so glad I did.
My friends know that at times its difficult for me to string a sentence together. To focus, collect my thoughts and say what I want to say (Writing is easier. Possibly because I can continue to edit over and over). After a morning of seizures I thought I would be a disaster. I didn't plan to stay long. We were the first to arrive and one of the last to leave.
Funny thing is my comfort level with this group was so relaxed that I never struggled at all. Ok I did a little but it wasn't a complete disaster. I also knew that if I did have a seizure I was completely safe. John was by my side to translate if necessary. My friends wouldn't care if I couldn't talk, stuttered, stammered, or even drool. We had the stage ready if we needed to play charades ;)
How refreshing and rejuvenating it was to have real conversations about the things that matter to me that wasn't completely AVM related. How wonderful it is to have loving, caring, real friends, both old and new.
Thank you John for taking time away from fencing to support me. ( thanks for fencing as well)
Sending love from the hill.
This past Sunday John and I enjoyed the company of eight other families at our monthly "Gluten Free Food Frenzy". The group was established by my friend D and her daughter this winter in an effort to "simply share knowledge and build community around the gluten-free lifestyle by hosting a monthly feast. It is a family friendly fun and fabulous free of gluten (egg, soy,dairy, peanuts and other allergens) food fest." Month to month the attendance and location varies but each of us come to enjoy fabulous food with like minded families. Not all of us have food allergies but we all share the belief in healing our bodies with good food.Sunday morning was rough for me. I had continual focal seizures and I was exhausted. Logic said I should stay home and sleep but I chose to go. I am so glad I did.
My friends know that at times its difficult for me to string a sentence together. To focus, collect my thoughts and say what I want to say (Writing is easier. Possibly because I can continue to edit over and over). After a morning of seizures I thought I would be a disaster. I didn't plan to stay long. We were the first to arrive and one of the last to leave.
Funny thing is my comfort level with this group was so relaxed that I never struggled at all. Ok I did a little but it wasn't a complete disaster. I also knew that if I did have a seizure I was completely safe. John was by my side to translate if necessary. My friends wouldn't care if I couldn't talk, stuttered, stammered, or even drool. We had the stage ready if we needed to play charades ;)
How refreshing and rejuvenating it was to have real conversations about the things that matter to me that wasn't completely AVM related. How wonderful it is to have loving, caring, real friends, both old and new.
Thank you John for taking time away from fencing to support me. ( thanks for fencing as well)
Sending love from the hill.
Friday 30 March 2012
The Real Cost of Being Ill...
John and I are breathing a little easier this month. For the first time in nine months I received an income, from CPP Disability. You may recall in an earlier post about the hoops I had to jump through to get it.
Though it is not what I would be making if I was actually at work I welcome it. And I'm not too proud to accept it and my now "disabled" status.
Prior to my diagnosis, in February 2011, my position at work went from a full time with full benefits to a part time with zero benefits. Zero benefits means no Long Term Disability insurance. It also means when 15 weeks of Sick Benefits from Employment Insurance runs out there is no money left. At least for my family.
Being ill or supporting someone who is ill is mentally and emotionally draining. Doing so with no income is undescribable and extremely stressful. Stress so intense that it often causes more health problems or further complications.
Thank god we had a freezer full of meat and four credit cards to juggle our increasing debt load. We are very fortunate that friends pitched in where they could. By purchasing our eggs, jam, blankets etc. By sending us gift cards for groceries and gas. By topping up our oil tank. By giving us generous monetary gifts. We will be forever humbled and grateful for those peoples kindness. I have learned that people want to help but don't often know how. Here' s how...
I have a friend who has been fighting her own monster this past year. With her permission I share her personal (private) blog. Her story is different than mine but also similar in so many ways. I ask you to read it with an open heart and mind. Please think about her and her message. I am so proud of her and the courage it took to write so honestly. This is Daniela 's story.
Tuesday 27 March 2012
What ever happened to the holistic approach?
Given my brain is a little broken as I write this my point may not be immediately clear.
Bare with me - I have a story to tell.
I have been trying to get a hold of my Neurosurgeon for a while. Since I had my last MRI and consultation in December my seizure activity has began to pick up - again. I am experiencing frequent muscle weakness and sore joints on my right side. My AVM is on the left and the swelling effects movement, among other things, on my right. I had sent a bunch of emails, made a few calls, left some messages all of which were not responded to. The hospital where I received Gamma Knife Surgery is not the hospital my Neurosurgeon actually works at full time so sometimes it is difficult to track him down. As it turns out he was away for a few weeks. I decided not to pursue the other members of my team because they are not as familiar with my "unique case." (I now have his personal assistant's email address so I cc everything to her at her request :)
A couple of weeks ago I visited my Family Physician and had her run a bunch of blood work. She humored me but said, "you know it will all come back normal". I smiled. I requested the lab send the results to her but also to my Neurology team at Toronto Western Hospital and my Cardiologist at St. Michael's Hospital. "Normal or within normal" are her go to phrases. I no longer know anything and nothing in my life is within normal.
While at my appointment I shared with her my increase in seizure activity. She suggested that maybe I go off an anti depressant I have been taking because it may decrease the effectiveness of my anticonvulsant. Interesting. I had already independently decreased my dose from 60 to 20mg before I had surgery so stopping wasn't out of the question. Done. The doctor who originally prescribed this medication told me that with my "AVM diagnosis I have much bigger things to worry about now". I assume she meant bigger than mental illness that haunts my family at large. (Keep in mind we only have one brain).
Last fall I was referred to a Cardiologist because my Geneticist accidentally stumbled upon "something very wrong" with my heart while looking for more AVM's in my heart and lungs. Not vascular (AVM), not electrical (like B) but muscular. The left ventricle was beating 50% slower than it should be. New problem unrelated to everything else. Really? Unrelated?! I have learned that when you look for something you may actually find it or something completely unexpected. I have had four different tests on my heart over the past six months. The Cardiologist has been wonderful but he too believes my AVM is more important than anything else at this moment. I will finally hear the results and prognosis on April 4th. Sigh... I have so many questions... What caused this? How long has it been going on? Does this explain why I don't recognize my own body?
Since I am already making the trip to Toronto to see my Cardiologist I decided to touch base with my Neurosurgeon - one more time. I sent him a quick email to let him know I would be in Toronto on the fourth which happens to be his clinic day. I reminded him of my previous emails, the increased seizure activity and told him I was no longer taking Prozac. Within minutes he responded. "Prozac is known to cause seizures. Please discontinue and come see me on the fourth." Interesting! It's never been a secret I was taking this medication. Nor has it been a secret that I have regular seizures. So why the AHA moment now?
I would like nothing more to hand over my medical files for the past 15 years to an eager medical student and say. "Here! This is a list of symptoms and though they may seem unrelated I feel like everything is connected. I am of one body and mind. Please do not treat a part of me. Treat me as a whole."
Bare with me - I have a story to tell.
I have been trying to get a hold of my Neurosurgeon for a while. Since I had my last MRI and consultation in December my seizure activity has began to pick up - again. I am experiencing frequent muscle weakness and sore joints on my right side. My AVM is on the left and the swelling effects movement, among other things, on my right. I had sent a bunch of emails, made a few calls, left some messages all of which were not responded to. The hospital where I received Gamma Knife Surgery is not the hospital my Neurosurgeon actually works at full time so sometimes it is difficult to track him down. As it turns out he was away for a few weeks. I decided not to pursue the other members of my team because they are not as familiar with my "unique case." (I now have his personal assistant's email address so I cc everything to her at her request :)
A couple of weeks ago I visited my Family Physician and had her run a bunch of blood work. She humored me but said, "you know it will all come back normal". I smiled. I requested the lab send the results to her but also to my Neurology team at Toronto Western Hospital and my Cardiologist at St. Michael's Hospital. "Normal or within normal" are her go to phrases. I no longer know anything and nothing in my life is within normal.
While at my appointment I shared with her my increase in seizure activity. She suggested that maybe I go off an anti depressant I have been taking because it may decrease the effectiveness of my anticonvulsant. Interesting. I had already independently decreased my dose from 60 to 20mg before I had surgery so stopping wasn't out of the question. Done. The doctor who originally prescribed this medication told me that with my "AVM diagnosis I have much bigger things to worry about now". I assume she meant bigger than mental illness that haunts my family at large. (Keep in mind we only have one brain).
Last fall I was referred to a Cardiologist because my Geneticist accidentally stumbled upon "something very wrong" with my heart while looking for more AVM's in my heart and lungs. Not vascular (AVM), not electrical (like B) but muscular. The left ventricle was beating 50% slower than it should be. New problem unrelated to everything else. Really? Unrelated?! I have learned that when you look for something you may actually find it or something completely unexpected. I have had four different tests on my heart over the past six months. The Cardiologist has been wonderful but he too believes my AVM is more important than anything else at this moment. I will finally hear the results and prognosis on April 4th. Sigh... I have so many questions... What caused this? How long has it been going on? Does this explain why I don't recognize my own body?
Since I am already making the trip to Toronto to see my Cardiologist I decided to touch base with my Neurosurgeon - one more time. I sent him a quick email to let him know I would be in Toronto on the fourth which happens to be his clinic day. I reminded him of my previous emails, the increased seizure activity and told him I was no longer taking Prozac. Within minutes he responded. "Prozac is known to cause seizures. Please discontinue and come see me on the fourth." Interesting! It's never been a secret I was taking this medication. Nor has it been a secret that I have regular seizures. So why the AHA moment now?
I would like nothing more to hand over my medical files for the past 15 years to an eager medical student and say. "Here! This is a list of symptoms and though they may seem unrelated I feel like everything is connected. I am of one body and mind. Please do not treat a part of me. Treat me as a whole."
Building BLACKberry Fields
John, our three children and I have lived in the house we built on the hill for just over 8 years. For over 10 years we have dreamed of a farm. To build something sustainable that can be passed down through out generations to come. We often tell people we were born in the wrong century.
We named the land BLACKberry Fields because it's a spin on our family name and the blackberries that grow wild throughout the field and along the tree line.
This spring is the start of something big. We are turning dreams into goals and working towards achieving them.
A lot of fresh fertilizer was spread.
We named the land BLACKberry Fields because it's a spin on our family name and the blackberries that grow wild throughout the field and along the tree line.
This spring is the start of something big. We are turning dreams into goals and working towards achieving them.
Last fall we hired a local contractor to expand our vegetable garden. It is roughly 10 times larger than previous years. We will grow enough for us, our neighbours and to participate in our local farmers market.
A lot of fresh fertilizer was spread.
We inherited Grandpa McKelvey's tractor and started drilling holes for fence posts.
We have purchased lots of fence and we still need more.
Might as well do it right the first time and save headaches later.
Might as well do it right the first time and save headaches later.
Seeds were carefully selected, ordered, planted and are beginning to grow.
I have spent countless hours researching what animals are the best fit for our land. By the end of April four Tamworth weaners, only six weeks old, will move to the hill. Their job will be to help root up more land for next years crops. No need to hire someone this year.
courtesy of google images
We are expanding our egg layers. They will have their new home moved here at the end of May. The area will give them plenty of space to hunt for bugs but will also be fenced to better protect them from the sneaky fox. Mr. Roo and "his girls" will have a new home for their chicks. We will also be raising our own fryers (meat birds) this year.
The pasture still needs to be prepared for cattle to graze. In past years other farmers have used our land. This year a couple of the cattle will be our own.
And if all goes according to plan we may even see a goat or two ;)
Tuesday 20 March 2012
After Ablation...
While laying on a small couch around 2am watching B sleep I was suddenly surprised with how tall he was. Really surprised. When did he get so big? I knew he was growing because he just got new shoes and they were two sizes bigger than the ones purchased in October. Plus every time he sees his Grandma Janet he measures himself against her; its like a right of passage to surpass her 5' status. But as he lay in his hospital bed, softly snoring, hooked to an IV pole, ECG and various other machines he was suddenly a young man and not our wee boy anymore.
Over the past five days I have marveled at his quiet confidence and extreme bravery. No matter what information he was given he listened politely and absorbed what he was hearing. Even when the news was a dose of harsh reality he remained calm and optimistic. He asked questions to help himself (us)better understand what was happening and why. When ever he was asked if he would like to participate in a research study to help other children he eagerly agreed. Where did my anxious bundle of energy go? The boy who bounced non stop through out an entire school year?
John and I couldn't be more proud of B and we are so very relieved that this part of the journey is over.
So what now....
The accessory pathway was found on the left side of his heart and repaired. He was monitored closely and received Heparin for about 18 hours to prevent clotting. He is sore, tired and glad to be home. He will continue to take Aspirin for the next three months. The risk of the Aspirin causing a bleed in his brain AVM is very low therefore a must to prevent blood clots in his heart. In June B will have another ECG and his Cardiologist will make further recommendations. As it stands in this moment, his broken heart has been mended.
John and I both want to thank you for the tremendous amount of ongoing support we have received. We are extremely blessed to have such great friends and family behind us.
Sending much love from the hill and
Happy Spring :)
Over the past five days I have marveled at his quiet confidence and extreme bravery. No matter what information he was given he listened politely and absorbed what he was hearing. Even when the news was a dose of harsh reality he remained calm and optimistic. He asked questions to help himself (us)better understand what was happening and why. When ever he was asked if he would like to participate in a research study to help other children he eagerly agreed. Where did my anxious bundle of energy go? The boy who bounced non stop through out an entire school year?
John and I couldn't be more proud of B and we are so very relieved that this part of the journey is over.
So what now....The accessory pathway was found on the left side of his heart and repaired. He was monitored closely and received Heparin for about 18 hours to prevent clotting. He is sore, tired and glad to be home. He will continue to take Aspirin for the next three months. The risk of the Aspirin causing a bleed in his brain AVM is very low therefore a must to prevent blood clots in his heart. In June B will have another ECG and his Cardiologist will make further recommendations. As it stands in this moment, his broken heart has been mended.
John and I both want to thank you for the tremendous amount of ongoing support we have received. We are extremely blessed to have such great friends and family behind us.
Sending much love from the hill and
Happy Spring :)
Sunday 11 March 2012
The Count Down
The count down has begun.
We have waited for months.
Now I wish there was a little more time.
In one week B is going to have his broken heart mended.
We are told the procedure will take four to five hours.
They will first find the accessory pathway, then repair it.
B's doctor reports great success. I have faith in him and the hospital.
However, we have the added complication of HHT. The unknown.
The likelihood of having to use a blood thinner is 50% depending on which side of the heart the problem lies. That means the risk of a bleed in his brain is lower.
The Neurologist gave his approval.
I have never been more afraid in my entire life.
Fear makes you to do lots of things.
You reassess and reevaluate. You question everything. You prioritize.
You take stalk of where you are, where you are going and who is coming for the ride.
You make choices in the best interest of you and yours.
Choices that not everyone will understand or respect.
I am making peace with that.
I am going to put my blog to bed for the week.
I am going to focus on whats truly important to me.
My family of five. Our health and happiness.
The future.
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