Happy 5 month brainaversary!!
WOW! can't believe it's been five months already! And at the same time I can't believe it's only been five months!
Here is an update on my recovery thus far and the future of my brain.
I continue to be in physical therapy twice a week, every week.
But, my therapy doesn't stop there.... I work at a summer camp so my
therapy extends to the camp grounds. I am always walking, up and down
hills, on rocky roads, bumpy grass patches, up and down stairs... you
name it....
Every week there is still such a progression from the previous week.
The first week of camp I mastered walking up and down stairs, without
holding onto the handrail! Second week, I mastered carrying a child and
balancing on my own two feet! Last week, for the first time, while
walking forward, holding 4 kids hands (that's progress in and of
itself...) I turned around and looked behind me, continuing to walk
straight. It's crazy that that seems like such a simple task, but that's
something I have not been able to do for the last 5 months!
This
week I had the biggest milestone, I think, since I got off the walker
and then the cane.... This week for the first time in 5 months... I
RAN!!!! It was like I was a perfectly healthy normal 22 year old, just
running like I'm supposed to do. The feeling I got afterward was
unexplainable!
Another big milestone for the week, I jumped this
week, both of my feet... off the ground at the same time... and landing... both
feet down at the same time.... without falling!! Jumping is still kinda
tricky for me and I look like a three year old when I do, but hey, it's
in the right direction.
Now, onto my brain's future. 30% of the
AVM is still chillin in there... so that's an issue.... My parents,
neurosurgeon and I all agreed that it is important that we wait for my
full recovery before we go for more brain surgery. So, we will be
discussing possible future brain surgeries in another 6 months from now.
Monday, July 23, 2012
Thursday, May 31, 2012
"Whether you believe you can or believe you can't, you're probably right."
When I started Queens College in the fall of 2009, I dreamed of the day I would walk down my graduation aisle. On February 23rd, 2012, everything changed.
We didn't know the severity of my situation until a few days later. On February 28th, I was talking to the nurses and doctors about how I was graduating in May and couldn't wait to walk down the aisle without my walker or a cane. They didn't want to give me false hope, so they broke the news to me-- "May is really soon, if you will be able to walk down the aisle, you would be using a walker-- a cane at best... maybe you will be able to walk down your wedding aisle without any aids..." I answered, "May IS really soon, but I will walk down my graduation aisle, I promise."
Well, it is now May 31st and I am officially a college graduate! I woke up this morning, did my hair and make-up, put on my dress, cap, gown, and put on my HIGH HEEL shoes. I went to campus at 8 o'clock and stood on line for 1 hour before I began to walk down the aisle, by myself, no walker, no cane, no one holding me, just me-- almost as if I was back to normal.
After the school wide graduation we broke into our departmental graduations. For whatever reason, of the 11 graduates in my program, I was the only one to stay for this ceremony. They announced my department, and called my name and I climbed the 6 stairs to get onto the stage, walked across the stage, shook 3 peoples hands, posed for a picture and walked back down 6 stairs. It was a dream come true.
Most peoples families were crying because they were happy to see their loved ones achieve such a milestone in their lives. My family was crying because today, I achieved two milestones in my life. And I couldn't feel more blessed.
We didn't know the severity of my situation until a few days later. On February 28th, I was talking to the nurses and doctors about how I was graduating in May and couldn't wait to walk down the aisle without my walker or a cane. They didn't want to give me false hope, so they broke the news to me-- "May is really soon, if you will be able to walk down the aisle, you would be using a walker-- a cane at best... maybe you will be able to walk down your wedding aisle without any aids..." I answered, "May IS really soon, but I will walk down my graduation aisle, I promise."
Well, it is now May 31st and I am officially a college graduate! I woke up this morning, did my hair and make-up, put on my dress, cap, gown, and put on my HIGH HEEL shoes. I went to campus at 8 o'clock and stood on line for 1 hour before I began to walk down the aisle, by myself, no walker, no cane, no one holding me, just me-- almost as if I was back to normal.
After the school wide graduation we broke into our departmental graduations. For whatever reason, of the 11 graduates in my program, I was the only one to stay for this ceremony. They announced my department, and called my name and I climbed the 6 stairs to get onto the stage, walked across the stage, shook 3 peoples hands, posed for a picture and walked back down 6 stairs. It was a dream come true.
Most peoples families were crying because they were happy to see their loved ones achieve such a milestone in their lives. My family was crying because today, I achieved two milestones in my life. And I couldn't feel more blessed.
"We make a living by what we get, but we make a life by what we give."
I just wanted to thank every single person who has helped me raise money for The Aneurysm and AVM Foundation. I sent in a donation of $500 to TAAF and I could not have done it without each and everyone of you who donated! Through the fundraiser we were able to raise AVM awareness and help the foundation and I could not be more thankful.
Thank you from the bottom of my heart!
Thank you from the bottom of my heart!
Monday, April 23, 2012
"The worst disability is a bad attitude." — Michael Muir
So, today is my two month brainaversary!
I have improved so much in the last 2 months. Right after surgery I couldn't stand on my own, and now, two months later, I have graduated my walker and am bound to my cane for long distances and uneven surfaces. I am in out patient physical therapy at a center one hour a day twice a week and every day I improve tremendously. I can now walk around my apartment or around one floor of my house upstate without the cane or anything! I still have a hard time with stairs but they get easier with time. I also have a hard time balancing if the lights are off, and at the end of the day, or when I am tired. But I am working on all of these things... On a FANTASTIC note, I RODE MY BIKE ALL BY MYSELF AGAIN!!!!!! (slowly, and only around the col-de-sac in front of my house.... but it is still a HUGE step!)
At some point in May, I will be going for an MRI to decide on the next step, and I will update accordingly.
On a different note, I have decided that when I am all better, I will run the NYC half marathon. I spoke with many of my friends and family about this as well as my physical therapists and they have all been very supportive. I started using the treadmill at 1.5 speed for 30 minutes as a start to my training, I have since moved up to 1.8 speed for 45 minutes. I was working and will continue to work with my physical therapist to build up all the muscles I need to be able to run this marathon. I hope to also run a 5K before December as a practice or prep for my half marathon which will *hopefully* be in March.... so keep your schedules free!! :-)
I have improved so much in the last 2 months. Right after surgery I couldn't stand on my own, and now, two months later, I have graduated my walker and am bound to my cane for long distances and uneven surfaces. I am in out patient physical therapy at a center one hour a day twice a week and every day I improve tremendously. I can now walk around my apartment or around one floor of my house upstate without the cane or anything! I still have a hard time with stairs but they get easier with time. I also have a hard time balancing if the lights are off, and at the end of the day, or when I am tired. But I am working on all of these things... On a FANTASTIC note, I RODE MY BIKE ALL BY MYSELF AGAIN!!!!!! (slowly, and only around the col-de-sac in front of my house.... but it is still a HUGE step!)
At some point in May, I will be going for an MRI to decide on the next step, and I will update accordingly.
On a different note, I have decided that when I am all better, I will run the NYC half marathon. I spoke with many of my friends and family about this as well as my physical therapists and they have all been very supportive. I started using the treadmill at 1.5 speed for 30 minutes as a start to my training, I have since moved up to 1.8 speed for 45 minutes. I was working and will continue to work with my physical therapist to build up all the muscles I need to be able to run this marathon. I hope to also run a 5K before December as a practice or prep for my half marathon which will *hopefully* be in March.... so keep your schedules free!! :-)
Wednesday, March 14, 2012
You never know how strong you are until being strong is the only choice you have!
So, since my last update from the ICU, a lot has changed.
As most of you know, there was a bit of a hiccup during surgery and I had to spend 2 weeks in the hospital, 1 week in rehab re-learning to walk.
During this surgery the doctors found that my AVM which we thought was 1.5 cm, was actually 2.5 cm. They also found that my AVM which we thought had 1 feeder, actually had 2 feeders. Both of these findings made this surgery more difficult than expected.
After I woke up from my surgery, my doctors and nurses told me that I was great and they were talking about sending me home earlier than expected. Until, it came time for me to stand up and walk to the bathroom. I sat up in bed, but when I stood up, my knees buckled and I fell to the floor-- the nurses caught me. It was at that point they realized something was off. There was an unforeseen circumstance that no one was prepared for. They sent me for an MRI and found that since they had done this procedure in the cerebellum (the center for balance) I had swelling and one of the feeders that was feeding the AVM was also feeding part of the cerebellum, so when they plug that up, it messed up my balance, therefore affecting my ability to walk.
I spent a week in intense rehab therapy in the hospital. There they worked with me for 3 hours a day minimum with occupational and physical therapy. During this week I went from not being able to stand on my own, to walking with a walker all by myself. I even began to practice with just a cane.
I am back home now, but still using the walker, and cane. I am getting a lot better each day and pushing myself to the limit everyday to get back to perfect. I have home therapy coming to my house to work with me until I am good enough to be an out patient and go to a physical therapy facility. The doctor told me that he was very impressed with my progress. My attitude, motivation and age are all working in my favor to speed up this arduous recovery.
I met with my neurosurgeon yesterday and we decided that we will not rush to the next surgery. I will continue to recover and in May I will have an MRI which will give us an idea of how the AVM healed from this last surgery, and that will give us an idea of how we will proceed on to the next surgery.
Now that my AVM was knocked down from 2.5 cm to 1-1.5cm, the options for the next surgery are:
Gamma knife: radiation therapy. Basically its laser tag in my brain to burn away the rest of the AVM. It is an out patient procedure, but the effects of the laser won't be complete for 3 years. So that's annoying.
Embollization: glue treatment. The same thing I had done this last time.
Or there is the option to just watch it. I would then live with the AVM but go back periodically for MRIs to make sure it hasn't grown. So with this option, I will lead a normal life and have no limitations, but I will always have this AVM in the back of my head (figuratively and literally).
There is an option of open head surgery, but myself, my parents and the doctors all agreed that that will not be in my best interest, because of the location and nature of my AVM.
As always, if you have ANY questions please don't hesitate to ask!!
Thank you again to every single person who has been supporting me, praying, texting, messaging, reaching out in any way and helping me (and my family) through these last few weeks, each of you is helping me take one more step to a full recovery!!! <3
As most of you know, there was a bit of a hiccup during surgery and I had to spend 2 weeks in the hospital, 1 week in rehab re-learning to walk.
During this surgery the doctors found that my AVM which we thought was 1.5 cm, was actually 2.5 cm. They also found that my AVM which we thought had 1 feeder, actually had 2 feeders. Both of these findings made this surgery more difficult than expected.
After I woke up from my surgery, my doctors and nurses told me that I was great and they were talking about sending me home earlier than expected. Until, it came time for me to stand up and walk to the bathroom. I sat up in bed, but when I stood up, my knees buckled and I fell to the floor-- the nurses caught me. It was at that point they realized something was off. There was an unforeseen circumstance that no one was prepared for. They sent me for an MRI and found that since they had done this procedure in the cerebellum (the center for balance) I had swelling and one of the feeders that was feeding the AVM was also feeding part of the cerebellum, so when they plug that up, it messed up my balance, therefore affecting my ability to walk.
I spent a week in intense rehab therapy in the hospital. There they worked with me for 3 hours a day minimum with occupational and physical therapy. During this week I went from not being able to stand on my own, to walking with a walker all by myself. I even began to practice with just a cane.
I am back home now, but still using the walker, and cane. I am getting a lot better each day and pushing myself to the limit everyday to get back to perfect. I have home therapy coming to my house to work with me until I am good enough to be an out patient and go to a physical therapy facility. The doctor told me that he was very impressed with my progress. My attitude, motivation and age are all working in my favor to speed up this arduous recovery.
I met with my neurosurgeon yesterday and we decided that we will not rush to the next surgery. I will continue to recover and in May I will have an MRI which will give us an idea of how the AVM healed from this last surgery, and that will give us an idea of how we will proceed on to the next surgery.
Now that my AVM was knocked down from 2.5 cm to 1-1.5cm, the options for the next surgery are:
Gamma knife: radiation therapy. Basically its laser tag in my brain to burn away the rest of the AVM. It is an out patient procedure, but the effects of the laser won't be complete for 3 years. So that's annoying.
Embollization: glue treatment. The same thing I had done this last time.
Or there is the option to just watch it. I would then live with the AVM but go back periodically for MRIs to make sure it hasn't grown. So with this option, I will lead a normal life and have no limitations, but I will always have this AVM in the back of my head (figuratively and literally).
There is an option of open head surgery, but myself, my parents and the doctors all agreed that that will not be in my best interest, because of the location and nature of my AVM.
As always, if you have ANY questions please don't hesitate to ask!!
Thank you again to every single person who has been supporting me, praying, texting, messaging, reaching out in any way and helping me (and my family) through these last few weeks, each of you is helping me take one more step to a full recovery!!! <3
Friday, February 24, 2012
Update from recovery
Yesterday, at 8am I had my embolization. The procedure was successful in that there were no complications, however, it was unsuccessful in that they were only able to seal up some of my AVM. They knocked it down but they didnt knock it out, it did shrink near my brain stem. I am in ICU recovering now. My side effects are dizziness and headaches. The doctors and nurses told me I am recovering well! So, thats good!! Meanwhile, they took out my IVs and I am sitting up on my own now. The doctors thought I could leave the ICU this afternoon but since I am dizzy and off-balance, they are moving me to a unit called step-down. Its basically a less intense ICU. Visiting is more lax there, so thats good. After 1 night there I will be reassessed and then either leave tomorow night or Sunday. So what's going to be with me? My doctor wants to give me a couple of months for my condition to stabilize and then we will discuss how to close off the rest. Thank you all for your support!! Thank you to everyone who donated towards TAAF to raise awareness and help find a diagnostic tool for early detection. I especially want to thank my sister Amy for all of her help in raising money for the cause!
Monday, February 20, 2012
Together, we can raise AVM awareness!!
By the age of 20, only about .1% has NOT bled-- that means that 99.9% of people with AVMs will hemorrhage by the age of 20! Every year, the odds of bleeding go up 3-4%.
Since my diagnosis I have discovered a fantastic website, www.TAAFonline.org . TAAF stands for The Aneurysm and AVM Foundation.
This organization is researching AVMs and aneurysms in order to find early detection, before they hemorrhage. This foundation also organizes an annual awareness walk.
I am currently selling these bracelets all proceeds will be donated to TAAF. (on one side they say: "RAISE AVM AWARENESS", the other side: "WWW.TAAFONLINE.ORG"-- band is black; font is teal.)
I am accepting any donations for TAAF, but for a donation of 5 dollars, or more, you will receive a bracelet.
Please contact me if you are interested in making a donation.
Thank you all for your support!
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