This morning I woke up to a comment on my Seven Month Anniversary post. It was from a man named Greg, who had the same condition as me. He had surgery by Dr. Spetzler seven months ago. I just emailed him10 minutes ago, so we haven't connected yet. But, I have to admit, I cyber stalked him. I was trying to find him on Facebook to add him to the brain stem surgery support group and instead I ended up finding his wife's blog.
This man is a miracle. Like me, Greg and his wife took to writing a blog to update others on his condition. Like me, they are honest about it all; the good and the bad. I am inspired by him. I have not been granted permission from Greg to share his story yet. So, I am not really sure why I am writing. I don't have much to say.
Actually, yes I do. Receiving his comment on my post was an amazing birthday present. To find yet another person, from Iowa even, that has my condition is a Godsend. It makes me hopeful that we all are helping put a spotlight on our condition so more people, especially doctors, can be informed. We are shining our lights even in our time of despair.
Even though you do not know Greg, I ask that you pray for him and his family. They have all endured so much since September 2013 and could use every thought and prayer given to them.
Lastly, if you want to give me a belated birthday present today, go out and do something nice for someone. It doesn't have to be anything extravagant; a simple compliment to another will do. We all have it in our power to make this crazy world a little bit better.
Go out and shine your light today.
Saturday, May 31, 2014
Sunday, May 25, 2014
Seven Month Anniversary
It has been seven months since I had my stroke. It would be easy to assume that time would just crawl since I am impatient with the speed of my recovery. But, to be honest, the last seven months have been the fastest of my entire life. There was a lot to keep me busy: rehabilitation and recovery, the holidays, my pregnancy and delivery of Myah, and the onset of summer. It is only going to get busier and life is only going to go faster. I have to constantly remind myself to stop and open my eyes to the beauty in my life.
As with last months update, I feel my recovery slowing down. I continue to make small improvements, but they would not be noticeable to all of you. The greatest difference this month has been with the way that I feel. The stiffness and heaviness on my left side has improved slightly. The most noticeable change is that I no longer experience tingling or increased stiffness when I exercise, tire, or have Patrick rub my feet or neck. (Yes, he is AMAZING!) It all stays the same which is incredibly positive.
My sensation is still diluted. I have been wearing flip flops since the weather changed and it was challenging the first few days to keep it on my left foot. I had to remind myself to flex my toes because my toes couldn't sense on their own if they were flexing or not. I also tried on heels for the first time to prepare myself for wedding season. It felt like I was walking on stilts since the sensation is decreased in my foot, ankle, and knee. My gait is now normal with my flip flops since I have been wearing them often. I hope that with practice I can train my leg to stabilize in heels. Because of my decreased sensation, it is still difficult to run because my leg feels so heavy. It feels like it doesn't bend at the knee as much as my right leg; in actuality, it really does. Plus, it feels 20 pounds heavier than my right leg. As a result, I feel like I am limping and dragging my leg all at the same time as I run.
My fine motor function in my left hand is still improving. My hand is stiff, but it doesn't stop me from doing anything. All I need at times is just a little bit of extra time. I have actually begun typing my posts. I still have to delete much more often than I used to, but it really doesn't take me that much longer. The strength in my hand and wrist is also improving. I did 12 lb. bicep curls the other day which I was very proud of. That is a far cry from what I used to pull, but my wrist was stable and my fingers did not struggle to grip the weight. I will get there. I just have to stay patient.
I had an eye appointment on the 19th. My right eye is still off center slightly (40 degree misalignment) and I still have double vision without my prism. My double vision improved slightly but not enough to go down in prism strength. They did give me a 15 strength to take home since I do not have another appointment until August. We spent most of the appointment discussing eye muscle surgery to re-center my eye and correct my double vision. I will know more specifics on that after the August appointment.
I have begun to exercise again. No, I am not in NLXF yet, but I have gotten on the elliptical, taken some long walks, and strength trained a little. I honestly believe it has helped relieve some of my stiffness. I have also began using Young Living Aroma Life essential oil to help alleviate my stiffness. I rub 3 drops of it at the base of my skull once a day. I have only been using it for a week so I am not sure if it is helping. But, I know it won't hurt me so I figure I don't have anything to lose.
I am at the point in my recovery where a stranger would never know I had a stroke. After speaking to me and making eye contact, they would probably notice my off-centered eye and prism on my lens. But, for the most part, I don't even think most people notice it. I am still self-conscious about it though. I am so mad that I am. I had a stroke in my brainstem while pregnant, delivered a healthy baby, and take care of four kids daily. I should be proud of myself and rock whatever deficits I have. Unfortunately, that is easier to say than do.
I don't feel sick because all of my deficits are just annoyances at this point. But, I don't feel normal. Why? Being normal to me means that I am able to do everything I used to do or the restrictions that I have are made by choice. I am forced to wear glasses because my double vision cannot be corrected with contacts. I HATE wearing glasses. Wearing glasses is out of my control and it is the number one reason why I do not feel normal. They are also a constant, scary reminder of what happened to me. On top of that, I cannot exercise how I used to. My body, nor my confidence, is ready for NLXF. That is a choice I am making so even though it makes me sad, it doesn't frustrate me. Being unable to run is extremely discouraging. Yes, I can't run to lose weight, but even more depressing is that I can't run with my children. I can't play ball with them, play tag, give them underdogs on the swings, or teach them how to ride their bikes. I watch Patrick do all of this with them and I just pray and pray the entire time that I will get to that point again one day.
I still have many goals to reach in my recovery. It is my hope that prayer and patience will continue to serve me well as I heal.
Cheers to another month that I have beaten my stroke!
As with last months update, I feel my recovery slowing down. I continue to make small improvements, but they would not be noticeable to all of you. The greatest difference this month has been with the way that I feel. The stiffness and heaviness on my left side has improved slightly. The most noticeable change is that I no longer experience tingling or increased stiffness when I exercise, tire, or have Patrick rub my feet or neck. (Yes, he is AMAZING!) It all stays the same which is incredibly positive.
My sensation is still diluted. I have been wearing flip flops since the weather changed and it was challenging the first few days to keep it on my left foot. I had to remind myself to flex my toes because my toes couldn't sense on their own if they were flexing or not. I also tried on heels for the first time to prepare myself for wedding season. It felt like I was walking on stilts since the sensation is decreased in my foot, ankle, and knee. My gait is now normal with my flip flops since I have been wearing them often. I hope that with practice I can train my leg to stabilize in heels. Because of my decreased sensation, it is still difficult to run because my leg feels so heavy. It feels like it doesn't bend at the knee as much as my right leg; in actuality, it really does. Plus, it feels 20 pounds heavier than my right leg. As a result, I feel like I am limping and dragging my leg all at the same time as I run.
My fine motor function in my left hand is still improving. My hand is stiff, but it doesn't stop me from doing anything. All I need at times is just a little bit of extra time. I have actually begun typing my posts. I still have to delete much more often than I used to, but it really doesn't take me that much longer. The strength in my hand and wrist is also improving. I did 12 lb. bicep curls the other day which I was very proud of. That is a far cry from what I used to pull, but my wrist was stable and my fingers did not struggle to grip the weight. I will get there. I just have to stay patient.
I had an eye appointment on the 19th. My right eye is still off center slightly (40 degree misalignment) and I still have double vision without my prism. My double vision improved slightly but not enough to go down in prism strength. They did give me a 15 strength to take home since I do not have another appointment until August. We spent most of the appointment discussing eye muscle surgery to re-center my eye and correct my double vision. I will know more specifics on that after the August appointment.
I have begun to exercise again. No, I am not in NLXF yet, but I have gotten on the elliptical, taken some long walks, and strength trained a little. I honestly believe it has helped relieve some of my stiffness. I have also began using Young Living Aroma Life essential oil to help alleviate my stiffness. I rub 3 drops of it at the base of my skull once a day. I have only been using it for a week so I am not sure if it is helping. But, I know it won't hurt me so I figure I don't have anything to lose.
I am at the point in my recovery where a stranger would never know I had a stroke. After speaking to me and making eye contact, they would probably notice my off-centered eye and prism on my lens. But, for the most part, I don't even think most people notice it. I am still self-conscious about it though. I am so mad that I am. I had a stroke in my brainstem while pregnant, delivered a healthy baby, and take care of four kids daily. I should be proud of myself and rock whatever deficits I have. Unfortunately, that is easier to say than do.
I don't feel sick because all of my deficits are just annoyances at this point. But, I don't feel normal. Why? Being normal to me means that I am able to do everything I used to do or the restrictions that I have are made by choice. I am forced to wear glasses because my double vision cannot be corrected with contacts. I HATE wearing glasses. Wearing glasses is out of my control and it is the number one reason why I do not feel normal. They are also a constant, scary reminder of what happened to me. On top of that, I cannot exercise how I used to. My body, nor my confidence, is ready for NLXF. That is a choice I am making so even though it makes me sad, it doesn't frustrate me. Being unable to run is extremely discouraging. Yes, I can't run to lose weight, but even more depressing is that I can't run with my children. I can't play ball with them, play tag, give them underdogs on the swings, or teach them how to ride their bikes. I watch Patrick do all of this with them and I just pray and pray the entire time that I will get to that point again one day.
I still have many goals to reach in my recovery. It is my hope that prayer and patience will continue to serve me well as I heal.
Cheers to another month that I have beaten my stroke!
CFHS Graduation
Cedar Falls High School graduation was last weekend. I was unfortunately unable to attend. During the day I was receiving many messages that my journey had been mentioned. I taped the ceremony and watched it as soon as I could.
This in an excerpt of the speech that my friend and co-worker, Charlie, gave. I mentioned Charlie in my "I WILL Dream" blog post. His speech was about how each department in our school offered the kids valuable knowledge and advice for their future. This is the portion where he mentioned my journey. Just a heads up: there is a bit of an echo because we used our iPad to video it as it played on the TV.
I teared up as I watched it. I couldn't believe that he was talking about me. I think I could say, "I had a stroke." a million times a day for the rest of my life and it would still never sink in. Not to mention everything else that has happened or changed as a result of it. I was so honored that Charlie even thought of me and used the opportunity to impact the students with my motto. My heart was so full of a variety of emotions that it could have burst.
Thank you Charlie. I will cherish this forever.
This in an excerpt of the speech that my friend and co-worker, Charlie, gave. I mentioned Charlie in my "I WILL Dream" blog post. His speech was about how each department in our school offered the kids valuable knowledge and advice for their future. This is the portion where he mentioned my journey. Just a heads up: there is a bit of an echo because we used our iPad to video it as it played on the TV.
I teared up as I watched it. I couldn't believe that he was talking about me. I think I could say, "I had a stroke." a million times a day for the rest of my life and it would still never sink in. Not to mention everything else that has happened or changed as a result of it. I was so honored that Charlie even thought of me and used the opportunity to impact the students with my motto. My heart was so full of a variety of emotions that it could have burst.
Thank you Charlie. I will cherish this forever.
Tuesday, May 20, 2014
Happy Birthday Patrick!
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| Happy 33rd Birthday Daddy! |
I am struggling because my blog post is not about me
today. It is about my husband, Patrick. It is his 33rd birthday today
and I want this post to celebrate how amazing he is. I want this post
to be perfect.
Patrick and I have been together since September of
2001. That is a lot of birthdays, anniversaries, and Father's Days.
After awhile it becomes harder and harder to buy gifts for each other
that the other person actually needs or wants. The last seven months
have taught me that it is not about buying gifts. The greatest gift you
can give another person is telling them how you feel about them. Patrick, this is my gift to you.
Patrick,
When I sat down to
write this I didn't want it to be a repeat of anything that I had
written before. I asked myself "What is one word that I would use to
describe Patrick?" It was my idea to pick a word and explain why I
chose it. The problem: I cannot just pick one word. I would think of
one and then think, "but he is also this word too." I think that says a
lot about the type of person you are. I, as well as your family and
friends, all know this about you. My idea kind of evolved as a result.
Not only did I pick a word, but I asked many of your family and
friends to pick a word too. It could be a serious or humorous word; it was their choice. You are loved by many and I hope by reading
these you will understand how much. But first, a little message from your daughters.
Strong (Jamie Smith): I chose this word because I
know it is not one you would choose to describe yourself. You, my love,
have been through more in 33 years than most go through in an entire
lifetime. Still, you NEVER put yourself first. In my opinion, that
takes more strength than anything. You are strong. You make me strong.
All-Star: Puddy is an all-star husband and an all-star dad of the year. I know that if I ever needed a listening ear or words of advice, Puddy would be someone I would confide in. He's been like a dad figure for me but in his eyes he likes to think he is more of a "big brother." Keep being a one of a kind all-star.
Big Brother: He's the big brother I never had...always watching out for me, offering advice, and like Olaf, ready with warm hugs, LOL! The guy has his priorities right...Faith, Family and Friends. Hard to
find people like that in today's world. Cool thing about Puddy...the
line between friend and family are blurred. He makes his friends feel
like part of his family.
Brother: Might not seen eye to eye all the time growing up but like family I know he would be there.
Brother: Might not seen eye to eye all the time growing up but like family I know he would be there.
Perseverance: His back has been up against the wall a few times with life's challenges. He continues to fight. Happy Birthday Pud! Love, Tom
Caring: He is so loving as a husband and I definitely envy you Jamie for finding such a wonderful kind man that treats you so well! The first time I saw Patrick was when I was in the daycare at NLXF and he came in and hugged the girls so tight and you could tell how much they were loved by their dad and how much they loved him. Then I met both of you and from that minute on I wished that someday I could have such an amazing bond and such a loving family! Patrick is such an amazing father to those girls and also a great friend who is always trying to help everyone out anyway he can! He definitely needs the spotlight turned on him on his birthday! He definitely deserves it!
Caring: He is so loving as a husband and I definitely envy you Jamie for finding such a wonderful kind man that treats you so well! The first time I saw Patrick was when I was in the daycare at NLXF and he came in and hugged the girls so tight and you could tell how much they were loved by their dad and how much they loved him. Then I met both of you and from that minute on I wished that someday I could have such an amazing bond and such a loving family! Patrick is such an amazing father to those girls and also a great friend who is always trying to help everyone out anyway he can! He definitely needs the spotlight turned on him on his birthday! He definitely deserves it!
Gracious: Patrick,
I have had the privilege of knowing you for two years and have been
able to witness you as a husband to Jamie and as a dad to 4 darling
little ladies. One word never does a person justice, but when I think
about who you are as a person and who you are in my life I would say you
are one of the most GRACIOUS [Respectful. Compassionate. Kind.] men I
know. It is rare that people welcome you into their family the way your
family has. You protect me like a dad and give me a hard time like a
friend. You treat your wife with a beautiful love & respect that
isn't common these days and you are a fantastic dad! Thank you for
letting me be a part of your family! Have the happiest of birthdays
P.Smith! -KK
Genuine and Gentle: He loves big. Once you become friends with him you're basically family. Family is his top priority - he would do anything for his girls.
Genuine: He is one of the most sincere people I know. He is genuinely nice to everyone and never puts on a front. I especially love hearing him talk about you and the girls or reading his posts about your family because they are a true depiction of just how genuine he is; he isn't just professing his love for all of his Smith ladies on special occasions like birthdays and anniversaries; rather, he does it on a frequent basis which tells me that he means every word he says/writes about you! He isn't afraid to wear his heart on his sleeve and I think that's awesome!
Genuine: He is one of the most sincere people I know. He is genuinely nice to everyone and never puts on a front. I especially love hearing him talk about you and the girls or reading his posts about your family because they are a true depiction of just how genuine he is; he isn't just professing his love for all of his Smith ladies on special occasions like birthdays and anniversaries; rather, he does it on a frequent basis which tells me that he means every word he says/writes about you! He isn't afraid to wear his heart on his sleeve and I think that's awesome!
Selfless: He puts others' needs in front of his own. He is always making sure
everyone is taken care of. That makes him a great friend and an even
better husband and father.
OPPORTUNISTIC: "exploiting chances offered by immediate circumstances without
reference to a general plan or moral principle."
Patrick has gone through more by the age 33 than many people his age. He
doesn't endure these challenges, he is better because of them. This
isn't by chance, it is by choice. He hasn't simply found a strong
support group, he has created one.
Attentive: I am extremely impressed with how he has
handled everything in the last 6 months. It appears to me as if he is
quite mindful of all 5 of his girls and does his very best to be there
for you guys.
Sincere: He is one of those people who truly wants to know how you're doing when he asks. He's not looking for 'surface talk' - he is so thoughtful in always asking/caring about others' jobs, family, life, etc. I think that's why we all became friends so quickly - who wouldn't want to hang around someone so genuine! His sincerity is infectious and we're so glad to call him friend!
Sincere: He is one of those people who truly wants to know how you're doing when he asks. He's not looking for 'surface talk' - he is so thoughtful in always asking/caring about others' jobs, family, life, etc. I think that's why we all became friends so quickly - who wouldn't want to hang around someone so genuine! His sincerity is infectious and we're so glad to call him friend!
Big-Hearted: From the time he told me I was great the way I was to the guy who played football with my boys
in the Dome without getting tired or complaining. They still talk about
that guy! Always looking out for others.
Friendly: Seems simple, but it's refreshing to meet someone who is genuinely friendly.
It really can make someone's day.
Can't pick one!: Thoughtful, caring, struggling golfer:-)
One of the best human beings I know.
Passive-Agressive: Passive when it comes to cardio.
Aggressive when it comes to relaxing and having a beer. :-)
Driven By Love: We can talk him into anything if you can tug on his heart strings.
Strong when you are weak, brave when you are scared, and humble when you are victorious! And every now and then a little shitfaced at Christmas! ;-) Ali
Best BABY brother EVER! Not to mention watching him be the BEST Husband and Daddy to his girls! LOYAL and ETERNALLY GRATEFUL TO ALL! MOM has been with him, Jamie, the girls, all of us...always....I know that Mom always told Dad that he had to make sure Mom's baby was take care of always. I know Mom has been with Patrick every step of the way. After all, Patrick is namesaked after the both of them (Patrick Robert-Patricia-Mom and Robert-Dad). I just had to speak on behalf of Mom and Dad. My brothers and I know we have the BEST Baby Brother God could have ever gave us....blessed to watch him be the BEST to his wife, his girls, family and friends. Love always and forever, Your Sis
Motivator, Inspirational, Twelve
Sincerely grateful
Best BABY brother EVER! Not to mention watching him be the BEST Husband and Daddy to his girls! LOYAL and ETERNALLY GRATEFUL TO ALL! MOM has been with him, Jamie, the girls, all of us...always....I know that Mom always told Dad that he had to make sure Mom's baby was take care of always. I know Mom has been with Patrick every step of the way. After all, Patrick is namesaked after the both of them (Patrick Robert-Patricia-Mom and Robert-Dad). I just had to speak on behalf of Mom and Dad. My brothers and I know we have the BEST Baby Brother God could have ever gave us....blessed to watch him be the BEST to his wife, his girls, family and friends. Love always and forever, Your Sis
Motivator, Inspirational, Twelve
Sincerely grateful
Loyal (x2)
Dedicated to Friendship
Dedicated to helping and caring about everyone around him.
Golden Retriever
Genuine
Friday, May 16, 2014
Meet Sara
A few weeks ago I wrote a blog post called, Shine Your Light. It was in response to an email I had received from a mother of a woman who has the same condition I do. I have been in frequent communication with her daughter ever since.
Meeting her has been a Godsend for me. She lives in Des Moines, Iowa which is very close to where I live. How bananas is that? As you can imagine, our conversations are about some pretty heavy material that I think leave us both spinning and comforted all at the same time. It is so easy to talk to her. I can write one sentence and without needing to explain it, she immediately understands every underlying emotion, fear, struggle, and worry that accompanies it. It is freeing in a way to be able to really honestly express everything without needing to worry about how it is affecting the person your speaking to. There is nothing she doesn't understand because she is living it too.
I tell people all the time that I began this blog with ultimately two goals in mind. I wanted it to serve as a lasting journal of my recovery for my family and I and hoped that it would help someone else with my condition. I am not sure if people even read my blog, but that doesn't matter. All that matters is that I have helped one person. If I had not chosen to share my story publicly I would not have ever been able to help anyone.
Please meet Sara. She is beautiful inside and out. She is 29 years old and living with a cavernoma malformation in her brainstem. Her CM bled for the first time in February 2014. The exact location of her CM inside the brainstem is still unknown due to some blood residue left around the area. She will be having a second MRI in the upcoming weeks that will provide more clarity. She sent her scans to Dr. Spetzler who recommended surgery and gave her a positive prognosis for her recovery after surgery. On Monday she went to Mayo for a second opinion and met with Dr. Lanzino. He told her to wait to see if it bleeds again and asked her to get another MRI so he could have a clearer picture of the area. So, she is left with the agonizing decision to have surgery or wait it out. The amount of decisions and gravity that they each hold when determining to have surgery are overwhelming and life altering. Needless to say, Sara has jumped on the wacky roller coaster I have been riding for the last seven months.
Here is Sara's story, written by her personally.
Meeting her has been a Godsend for me. She lives in Des Moines, Iowa which is very close to where I live. How bananas is that? As you can imagine, our conversations are about some pretty heavy material that I think leave us both spinning and comforted all at the same time. It is so easy to talk to her. I can write one sentence and without needing to explain it, she immediately understands every underlying emotion, fear, struggle, and worry that accompanies it. It is freeing in a way to be able to really honestly express everything without needing to worry about how it is affecting the person your speaking to. There is nothing she doesn't understand because she is living it too.
I tell people all the time that I began this blog with ultimately two goals in mind. I wanted it to serve as a lasting journal of my recovery for my family and I and hoped that it would help someone else with my condition. I am not sure if people even read my blog, but that doesn't matter. All that matters is that I have helped one person. If I had not chosen to share my story publicly I would not have ever been able to help anyone.
Please meet Sara. She is beautiful inside and out. She is 29 years old and living with a cavernoma malformation in her brainstem. Her CM bled for the first time in February 2014. The exact location of her CM inside the brainstem is still unknown due to some blood residue left around the area. She will be having a second MRI in the upcoming weeks that will provide more clarity. She sent her scans to Dr. Spetzler who recommended surgery and gave her a positive prognosis for her recovery after surgery. On Monday she went to Mayo for a second opinion and met with Dr. Lanzino. He told her to wait to see if it bleeds again and asked her to get another MRI so he could have a clearer picture of the area. So, she is left with the agonizing decision to have surgery or wait it out. The amount of decisions and gravity that they each hold when determining to have surgery are overwhelming and life altering. Needless to say, Sara has jumped on the wacky roller coaster I have been riding for the last seven months.Here is Sara's story, written by her personally.
A few days before Valentines Day I noticed that my right foot was kind of numb. I didn’t think too much of it and would just make comments here and there to my husband about my stupid foot falling asleep. After a few days of this the numbness progressed up to my lower leg, and then my entire leg and then the next day I noticed my arm was numb until it went all the way up to the back of my scalp on the right side.
I went and saw my family doctor and she didn’t think too much of it. She told me I was the big puzzler of the day and said it wasn’t anything I should be worried about. I’ve had a vitamin B12 deficiency in the past and she thought that may be the cause so they did some blood work and sent me on my way. They called with my results on a Monday and said my blood work came back fine and that the numbness would likely go away in one to two weeks, but if it didn’t then I should come back in. That Wednesday afternoon while I was at work I noticed something a bit strange with my vision. I started to panic a bit and asked one of my co-workers/friend to take me to the Emergency Room. My husband met me there and right away we got a CT scan that revealed I had some kind of tumor or formation on the left side of my brainstem. At that time the doctor called it a meningioma. We were in absolute shock.
I was then taken in an ambulance to Mercy hospital downtown Des Moines while my husband followed in his car. When I got there it was pretty late at night (maybe 9 or 10) and right away they had me get another CT scan, but this time with the contrast in my IV. Within the half hour to an hour it took to get to the downtown hospital and get another test the bleeding had grown. Based on that they decided to put me in the ICU for the night. The next morning I had an MRI that revealed it was a cavernous malformation with a 1 cm bleed. They kept me in the ICU for another night and had me get an angiogram the next day to confirm it was a cavernoma. The neurosurgeon told us that I’ve had the cavernoma my whole life and it went almost 30 years without bleeding and could go another 30 before it would bleed again, if at all. He also told me that my symptoms should subside within 2-4 weeks and I could go back to work in 1-2 weeks.
We were of course ecstatic to hear this. We really liked the neurosurgeon and were very impressed by the staff at the hospital, but unfortunately they had only seen a couple cases like mine and didn’t know just how long it was going to take for me to heal. Once I got home after three days in the hospital things went downhill. My numbness got significantly worse. When trying to explain how it felt I would say that I felt like if I fell into a pool my right side would sink to the bottom because it felt like a ton of bricks. My vision got much worse and within a week I was seeing double. I also had facial drooping on the left side of my face and had some difficulty swallowing for a brief time. The very worst point was close to 2 weeks after I got home from the hospital. I experienced the first migraine of my life. I was in bed with my head throbbing. It was so bad I was getting physically ill.
The hardest thing was feeling so alone and so helpless. The doctor’s nurse and physicians assistant kept telling me to call them if I had more/worsening symptoms, but every time I called they would just tell me that there was really nothing they could do because they couldn’t do surgery due to the location and that was really the only solution. It’s an all or nothing thing, either you have brain surgery or do nothing at all. So to myself I kept thinking “then why do you keep telling me to call you if I have more symptoms."
Anyway, they did set me up with an appointment to see an ophthalmologist, which is where I received my first prism. I remember not being able to contain the smile on my face when he put that prism up to my eye and I could see one image again. At that point in time the Ophthalmologist thought that my eye would eventually heal on its own. We were told I had a 75% chance of it going back to normal without surgery. Again, we were very happy to hear this. A few weeks later I noticed my prism wasn’t working as well so we went back to the Ophthalmologist and discovered my eye had gotten significantly worse. It went from a 10-15 degree turn to a 35 degree turn in toward my nose. At that point the doctor said it would not heal on its own and I would need surgery in 6-9 months to get it corrected. That was hard news to take, but I had to keep remembering that while I was struggling getting around and HATED the way I looked, it was temporary and could eventually be fixed.
From there we continued doing lots and lots of research. My mom has been such a blessing, spending night after night researching and tagging different articles about cavernous malformations. My mom had found something online regarding the Barrow Neurological Institute and saw they had a 2nd opinion program where you could submit your scans and pay $100 to get a 2nd opinion. We thought, why not? We assumed this would give us confirmation that indeed, surgery was not the way to go for this condition. Boy were we wrong. I had a full blown panic attack while at work when I received the recommendation from Dr. Spetzler telling me I should have surgery. Everything I had heard and read up until that point had said surgery was not an option at this point in time and yet this doctor was telling me I should have this scary surgery.
After receiving that opinion we decided to make an appointment at the Mayo Clinic with Dr. Lanzino to try to work everything out and to help us decide what we should do. We of course continued researching surgery and surgical outcomes to aid us in making this decision. Over time my numbness started getting a bit better. I was able to write a little bit more and my typing speed picked up. I also started walking a bit better on my own, wasn’t limping and didn’t need someone to hold on to. I had more problems with my prism so we were thinking finally, it’s starting to improve, however, when we went back to the Ophthalmologist we discovered that my eye had gotten worse again. I’m now at a 40 for my prism, which is as high as they go.
We went to Mayo on Monday to meet with Dr. Lanzino. While we haven’t received his official opinion because he wants me to get another MRI to see the exact location of the cavernoma before he does or does not recommend surgery, he made it pretty clear that he would not do surgery at this time. My cavernoma is located in the middle of the brainstem so he would have to cut through healthy tissue to get to it, which could cause me permanent damage. He suggested waiting to see if I have another bleed and then if I did look into doing surgery at that time in hopes that the cavernoma would come to the surface and make it safer to resect.
So that’s where we are. We haven’t made our official decision yet, but hope to very soon.
I pray for you everyday Sara! God bless you and your wonderful husband!
Friday, May 2, 2014
I WILL Dream
I threw myself quite the pity party on Wednesday. I am not ashamed of it. I think I deserve to have moments of weakness and vulnerability after everything I have been through. Especially considering everything that could still await me in my future. BUT, I refuse to have these days without coming out of them wiser and stronger on the other side.
Pity is a special kind of poison. It's like a nasty cold. You wake up one morning and you feel a little under the weather. As the day goes on, you slowly get worse and worse until you are knocked completely on the butt by it. That was my day on Wednesday. I was up with Myah a lot during the night and I let my mind wander. I let my fears creep in to the point that by the end of the day I had convinced myself that another bleed and surgery were imminent in the near future. The end result; all my dreams were going to be shattered. Like I said, pity, especially self-pity, is a poison.
My blog post sparked quite the response from my family and my friends. On one hand, it was somewhat embarrassing for everyone to know that I was having a weak moment. On the other hand, I am not sure if I would have made it through the day without everyone. I do feel like I need to reassure everyone that even though I have these moments and are open about them, please do not count me out. I am one tough cookie and I have a pretty good grasp on my feelings and emotions. I still remember the day I checked out of New Aldaya and them asking me if I ever had feelings of depression, etc. After they left the room, Patrick turned to me and said, "They have no idea who they are talking to, do they?" I just laughed. The point is, I got this. Please don't doubt me.
What did I learn? My dreams have already come true. I have a husband that is so supportive and thoughtful. He carries the world on his shoulders without even blinking an eye and loves me no matter what kind of day I am having. I have four beautiful, healthy daughters that are the light of my life. As if that isn't already enough, I have family and friends that would literally drop everything on a dime to come help me in my times of need. My dreams have already come true.
I cannot live in the "what if's." I would like to quote part of an email that my good friend and co-worker, Jane, wrote me on Wednesday. She was explaining to me through her personal experience that I still dream and will always dream and to never let the "what if's" stop me. Jane is THE strongest woman I know and a daily inspiration to me. Jane, I hope you are okay with me quoting you. These words were just too perfect and right on to try to claim them as my own thoughts. Too late now if you're not! ;-)
I have never stopped dreaming. Dreaming is what got me through the night of my stroke and the rehabilitation journey I am on. I received another email from my co-worker and friend, Charlie, who is THE most wise person I know. Once again I cannot claim these words as my own. Charlie, I hope you don't mind, but I had to add this because these words just clicked for me.
I WILL DREAM.
Pity is a special kind of poison. It's like a nasty cold. You wake up one morning and you feel a little under the weather. As the day goes on, you slowly get worse and worse until you are knocked completely on the butt by it. That was my day on Wednesday. I was up with Myah a lot during the night and I let my mind wander. I let my fears creep in to the point that by the end of the day I had convinced myself that another bleed and surgery were imminent in the near future. The end result; all my dreams were going to be shattered. Like I said, pity, especially self-pity, is a poison.
My blog post sparked quite the response from my family and my friends. On one hand, it was somewhat embarrassing for everyone to know that I was having a weak moment. On the other hand, I am not sure if I would have made it through the day without everyone. I do feel like I need to reassure everyone that even though I have these moments and are open about them, please do not count me out. I am one tough cookie and I have a pretty good grasp on my feelings and emotions. I still remember the day I checked out of New Aldaya and them asking me if I ever had feelings of depression, etc. After they left the room, Patrick turned to me and said, "They have no idea who they are talking to, do they?" I just laughed. The point is, I got this. Please don't doubt me.
What did I learn? My dreams have already come true. I have a husband that is so supportive and thoughtful. He carries the world on his shoulders without even blinking an eye and loves me no matter what kind of day I am having. I have four beautiful, healthy daughters that are the light of my life. As if that isn't already enough, I have family and friends that would literally drop everything on a dime to come help me in my times of need. My dreams have already come true.
I cannot live in the "what if's." I would like to quote part of an email that my good friend and co-worker, Jane, wrote me on Wednesday. She was explaining to me through her personal experience that I still dream and will always dream and to never let the "what if's" stop me. Jane is THE strongest woman I know and a daily inspiration to me. Jane, I hope you are okay with me quoting you. These words were just too perfect and right on to try to claim them as my own thoughts. Too late now if you're not! ;-)
How right on is this woman? This single email brought me back folks. It made me wake up and gain some perspective."Nothing but my own doubts stop me. I can dream. I need to dream. Don't go to the "what if." You didn't live that way before. Don't live that way now. If we let every frightful thing govern us thinking "what if" we would never move forward. My normal is not the same any more. It never will be. My normal changed when I got married, when I had kids, when I ............. I'm not sure what "normal" is any more. Normal is what we make it. Normal is comfortable. That will come again. It will."
I have never stopped dreaming. Dreaming is what got me through the night of my stroke and the rehabilitation journey I am on. I received another email from my co-worker and friend, Charlie, who is THE most wise person I know. Once again I cannot claim these words as my own. Charlie, I hope you don't mind, but I had to add this because these words just clicked for me.
"The ability to dream is a gift nobody can take from us. Don't relinquish it simply because dreams and plans may not come to pass. Even though your medical risks are real, it is also true that dreams can, and do, shatter for any one of us. Focusing on the present and dreaming about the future are not mutually exclusive. You can do both. If one dream doesn't materialize, a new one can arise to replace it."My dreams give me hope. I know I am still dreaming because I still have that hope today. Yes, my future and the dreams I had six months ago may look a little different, but I can still dream. But, no one can take my ability to dream away except for myself. I can still dream big.
I WILL DREAM.
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