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)
Monday, 8 October 2012
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.
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