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.
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