Progress to Report

Elizabeth
Thankful for Every Day!

Tuesday, March 1, 2011

Let me just start by saying, "Life is good!! Really good."I continue to be grateful for how good I'm doing especially considering where we were almost three months ago. We are thankful for all that I can do and continue to work on all the things I can't do yet... or can't do well yet. I have been in rehab for just over a month and for the most part it is going well. I am meeting/exceeding lots of goals and that is something that makes me very happy, especially because my #1 goal is to take care of Jack. I had missed him so much while I was in the hospital and even at home when I wasn't strong enough to pick him up. Well, I can pick him up now and I have been able to do so for about two weeks... huge accomplishment!!! and I feel like I'm getting my boy back. (tears of joy!!!) I got to take care of him by myself last Tuesday afternoon for the first time since surgery/stroke and it was like bliss. I got to feel "normal" again. Thrilling! He's also starting to know that I can do more too. He'll ask me to pick him up now, but he knows to be gentle and to help me when I ask him. He says, "Mama has an owwe on her head", and then he taps my head gently if I'm holding him. It's so precious. Sometimes when I'm carrying him I will ask him to help me by holding on and he does...sometimes I just ask him because it's so cute how he wants to help me and I love his tight squeezes. :)

A few nights ago was another first. John was reading him books and putting him to bed, then he was rocking him like we always do. Normally Jack will request a certain song for you to sing to him and John thought he was requesting a new song, but it turned out he was saying, "I NEED Mama". Of course, I couldn't be any happier to fulfill his request until I figured out he was just playing us for more delay time. As soon as I got in his room to rock him and John left the room he said," I NEED Dada." My ego was instantly deflated ;)  So the short story is that I'm doing lots more with Jack and I'm super happy about it.

As for rehab, I said for the "most part" it's going well and by that I mean occupational therapy and physical therapy are going well. Speech therapy... not so much. Speech therapy is the one area that has the least objective criteria, so maybe it's also more difficult to note progress, but according to John and myself there is much progress to be made.

Emotional Recovery

Elizabeth
Thankful for Every Day!

Wednesday, September 7, 2011

As I embark on the ninth month of recovery it is finally the time to refine my focus on my emotional recovery. After all, I am hoping for a complete recovery in terms of body, mind, and  spirit..whole person/being recovery.  My physical:body recovery has been amazing. My cognitive:mind recovery has been slower...but none the less amazing too. I'm getting there one baby step at a time. My emotional:spirit recovery is only beginning. Ahhh...how daunting??? This whole process has been so beyond challenging both mentally and physically. And there is one big giant piece left in my recovery. The lucky thing is I get to do it.. I'm alive...after all this I can do anything! I am a very emotional person, and no this is not a result of my brain injury...it is who I am at my core, it's a big part of what defines me, and I am very glad that my emotional side was not lost with everything else. I have always been this way and hope to always be this way. I think being emotional is a very good thing. All of this brain stuff has definitely impacted my ability to process my emotions as they came though. I was so afraid of getting depressed that I chose to put all the scary, sad emotions aside and only focus on the tasks that were going to yield me recovery in the measurable sense. I couldn't handle all of the emotion associated with agreeing to have my head cut open, all the risks associated with that, and the intense focus that was required for maximum recovery. It was really hard to be all messed up and fully aware of all my deficits. The whole experience was very humbling and I was determined to not let it be crumbling. The months leading up to my surgery were grueling as I tried to accept what might be and plan accordingly. I was petrified only to find out after surgery that the unimaginable had in fact happened. I thought many times: O' God...help me be ready for this!!! As much as I wanted to be prepared...one can never be ready for this. So as panic set in, I checked the emotion and got down to work...,"Send me to rehab...I'll figure the rest out later".

Mystery Solved!

Elizabeth
Thankful for Every Day!

Wednesday, January 5, 2011

HI all,

For those of you wondering, we finally have an answer as to WHY I suffered a stroke during surgery. We had speculated but didn't really know why, until I spoke with Dr. Spetzler yesterday. I had seen Dr. Spetzler on many occasions while I was in the hospital, but I wasn't thinking clearly enough to ask the right questions at the time, once in rehab I did start to question WHY even though I knew there was the risk of stoke prior to surgery and answers as to what happened were not going to change the outcome or my overwhelming joy of getting this thing out of my head... but I still wanted to know... and now I do know. To explain what happened I should probably start at the beginning.

As it turns out my cavernous angioma was in a very difficult location, in the middle of my brain in the insular cortex right next to the right basal ganglia.... a place most neurosurgeons don't ever want to go. I knew this from the very beginning when the first neurologist read my first MRI 8/31/09  and told me," You have a very small cavernous angioma (CM)... something you were born with in the middle of your brain... it's nothing to worry about and you better hope you never need it out because they will not be able to get it out without causing you a lot of problems." She proceeded to tell me that lots of people(statistics show1 in 100-300) have cavernous angiomas and according to this first doctor they NEVER cause anyone any problems(sooo not true!!!!). I asked her if my complaints(dizziness, eye problems(can't see moving objects), and a strange feeling of being "out of it" that comes and goes 20-30 times a day(later determined to be partial seizures) were related to my CM... she told me ,"NO, this is an incidental finding... nothing to worry about and it's not causing your problems. You probably have an inner ear infection" and she sent me on my way with a prescription for sea-sick medicine which did nothing to resolve my complaints.

The Best Therapy I Ever Had... JACK!

Elizabeth
Thankful for Every Day!

Tuesday, June 28, 2011

It's amazing how little things just all of a sudden make perfect sense. Jack is a very busy little boy and caring for him has been a bit of a challenge since... well... probably forever, but since surgery it has been a huge challenge for me to take care of him by myself. He's really heavy, busy, and has way more energy than I do.  Last Friday I had a special therapy session that involved grocery shopping with Jack and my speech therapist. She wanted to see how I could manage him and finding all the stuff on my list. Jack was on his best best behavior which made it look easier than normal but it was a success, achievement, accomplishment none the less. I got almost everything on the list and I was able to attend to Jack's needs simultaneously. I forgot to ask the checker for postage stamps... checking out is the hardest part...Jack's done by then, I have to manage the money..and a lot is going on at the end. So, I did really well and I was happy with my ability to manage multiple things at the same time. My speech therapist said that she thinks if I could manage all of what I did that she thinks I'm ready to drive... so that's a BIG deal. I still need to do the driver's evaluation and maybe a class, but being cognitively prepared to drive is a huge accomplishment. As I was thinking about it the only way I think I'm getting there is by practicing attention and multitasking constantly while watching Jack. He is an extra busy boy and that is exactly what I needed to get better. Watching him is the perfect therapy...in every way. He pushes me to my limit every day... and I WANT to rise to the occasion..so I do. At first I was too weak to lift him, so I practiced my weights a million times a day, many times even late at night when I was so tired I thought I was going to drop dead,  trying to get strong enough to lift him. Holding and lifting him was something I wanted so badly... it just HAD to happen....and it did! Jack was my personal physical therapy exercise and motivation. Also, I think reading to kids is really important and Jack loves books, so it was a perfect match to improve my tone, intonation, and prosody, by reading to him with passion. Who wouldn't strive to emote dramatically when your "therapist/sweet little boy" is hanging on every word with the excitement and glee of a two year old? I could hardly wait to read Thomas and the Great Race for the zillionth time with more excitement than any time previously. This was the best speech therapy in town! Same deal for attention and multitasking...which were huge deficits for me post stroke. Jack is always on the move...trying to get into everything and anything. Attention is a full-time requirement and no therapy would have been this demanding. Watching him has been difficult but so super rewarding in every way. Point is Jack is exactly what I needed and I feel so blessed to be his mom. So now I know why I got a wild boy...because that's exactly what I needed!!

See the original article:

The Best Therapy I Ever Had... JACK!

in

Thankful for Every Day!

So True

Elizabeth
Thankful for Every Day!

Monday, February 2, 2015

I can totally relate to this! This is so me when I get too tired, except I would never say I don't need a nap. What a smart big brother!!!


Standard YouTube License @ America's Funniest Home Videos

See the original article:

So True

in

Thankful for Every Day!

Tackling Fatigue

Elizabeth
Thankful for Every Day!

Sunday, September 30, 2012

I am now a year and a half out of deep brain surgery and stroke. Fatigue is a deficit that I can not yet escape. My recovery has been excellent except for this fatigue. I HATE it!! I am constantly reading, researching, trying to figure out how to fix it...a mostly fruitless effort. But I never give up HOPE that it will get better. When? How? I have no idea, but the following outlines my latest effort.

I saw an endocrinologist to make sure there are no other medical explanations for the crippling fatigue I deal with daily. It seemed like a good idea because after brain surgery one can never be sure that something else didn't go wrong while they were in there. I also have hypothyroid (onset 4 years ago during my pregnancy) which is often a cause of fatigue, but supposedly my thyroid has remained stable according to my PCP. My opinion is that my thyroid is at least part of my fatigue problem, but I can't be sure. So, I had a full work up with the endocrinologist and there were a few issues identified. According to the tests, my thyroid was within the "normal" range and my blood sugar is low frequently. The doctor changed my thyroid to Armour and doubled the dose despite the "normal range". What do you know? I got two more hours out of the day. Previously I was awake for 4 hours twice a day, now I'm awake about 5 hours twice a day. So I think I'm heading in the right direction. My assessment is that I need more thyroid, and I need to do something about my diet to regulate my blood sugar better. I probably need to eat more frequently. Since my surgery I am less hungry, my body just doesn't seem to send the hungry message, so now I'm trying to eat at least every few hours even when I'm not hungry.

The Problem With a Rare Disease Diagnosis

Elizabeth
Thankful for Every Day!

Monday, May 18, 2015

SSTattler: Re-published May 23/2015 The Problem With a Rare Disease Diagnosis in Stroke Survivors Tattler.

Six months after the birth of my first child, I was diagnosed with a cavernous angioma. I never expected to have my life changed in so many ways. While cavernous angiomas are actually very common (one in every 500-600 people have them). They are still considered "rare" because most people that have them never know it as only about 30% of those with angiomas become symptomatic. Common onset symptoms can vary but often include:  seizures, stroke symptoms, hemorrhages, and headaches. Typically, a diagnosis only comes after an individual becomes symptomatic and has an MRI. The most common age for a diagnosis is in a person's 20-30's even though most people are born with their angiomas. Some people only have one (sporadic) or others have many/multiples (genetic).  By definition, cavernous angiomas, are abnormal clusters of blood vessels often resembling a raspberry configuration. The problem is that the lining of the blood vessels in cavernous angiomas are grossly dilated/defective, they have thin, weak walls that can leak or bleed easily. When these cavernous angiomas are in the brain and spinal cord and they bleed... They often become problematic.

Well, that's exactly what happened to me. When mine starred to bleed after my first pregnancy, I became symptomatic (dizzy, spacey, feeling weird, eyes not working right, etc). At first, I thought it was due to sleep deprivation, hormones, and everything new moms go through. By 6 months postpartum, I went to the doctors. Of course, they were sure I had postpartum depression. I insisted otherwise. No, I was not depressed but something was wrong. Eventually, I got an MRI which showed a 2.2cm cavernous angioma in the insular cortex....incidental finding....ugh!

Spreading Awareness About Cavernous Angiomas

Elizabeth
Thankful for Every Day!

Monday, January 16, 2012

Since being diagnosed with a cavernous angioma in September 2009, my life has changed greatly. I never really had a "cause". Many people are touched by one thing or another along their path of life and they get motivated to make that their "cause". While I had been touched by many things, no specific thing moved me like this diagnosis and all the emotional ramifications that this diagnosis created for me. In finding Angioma Alliance, I have also made dear friends that share in this dreadful diagnosis...many of them have it much harder than I do/did. I was blessed to hopefully only have one bleeding mess in my brain. Some of my friends have multiples or they have them in a location that prevents surgical treatment. For many of my friends there is no cure yet. :( I hope that will change in time, and I intend to do my part to help be a part of the cure. I have taken on trying to spread awareness about cavernous angiomas as a part of trying to better the lives of "us" afflicted with this condition.  While I...hopefully.. no longer have a cavernous angioma I will always identify with those afflicted. I have been there/done that! I understand how hard it is to live with the uncertaintly, the bleeding, the seizures, the deficits, the surgery, and the recovery.

GIANT Sigh of Relief!

Elizabeth
Thankful for Every Day!

Sunday, March 27, 2011

I had a 3 month follow-up MRI last week, and according to my local neurologist and neuro-radiologist my cavernous angioma had only been partially removed!! This is NOT what we wanted to hear. I had this scary surgery so that we could be done with cavernous angioms...done with bleeding brains...done with worrying about every headache...done with seizures.... and done with every strange neurological symptom that may arise as a result of the monster that was in my head. According to these two ladies, my latest MRI showed a small piece of the very monster we had hoped was gone forever. The problem lies in the fact that these things(cavernous angioms) are known to regrow and re-bleed (please, never again!!!) if they are not removed completely ...hence why we researched the surgeon so explicitly and why we went to Dr. Spetzler specifically. He is supposed to be one of the world's best neurosurgeons specializing in cavernous angioma resections(removals). As scary as the surgery was, and as challenging as my recovery has been, I am still ok with the whole process as long as the thing is out of my head...completely!!! I have not had very reliable MRI readings here locally though...so for the past week we tried to remain hopeful that this was just par for the course and consistent with my past experiences...Maybe the local doctors had misinterpreted the latest MRI? Yep!! Same old routine. We sent my latest MRI to Dr. Spetzler as soon as we received the bad news; and his resident called Thursday night to give us the good, very good news that my cavernous angioma has, in fact, been fully resected! Yippee!!

Attitude is Everything!

Elizabeth
Thankful for Every Day!

Sunday, September 1, 2013

Well maybe not everything, but one should never discount the power of a positive attitude. I whole heartedly believe that a big part of my miraculous recovery is attributable to my relentless positive attitude and my intentional focus on all things that are positive. Some people, especially negative people, like to discount attitude as a contributing factor in any survivor's success or lack of such in their own recovery. It's probably because they don't want to admit that their "bad"/negative attitude is preventing and/or limiting their own recovery. In reality, they should be looking for ways to foster a more positive attitude that can only possibly aid in recovery. Attitude is something that you can control and change. With so many unknowns involved in brain injury and recovery, it seems crazy to deny the possibility that bringing your most positive thoughts and attitude could aid in your recovery. I've certainly never heard of anyone ever blaming a positive attitude for a failed or unsuccessful recovery. Some survivors also don't want to or are afraid of taking ownership of or responsibility for their recovery. I think that too is a mistake. Own it, drive it, force it, will it, demand it, make it happen. If what you are doing isn't working, change it, get new therapists, try new therapies, change your thoughts.Whatever you do, stay positive and think YOU CAN change it, unless you are happy and satisfied where you are at. Many doctors and therapists are pessimistic...there is NO room for that negativity in your recovery. When you give up, start buying into the restrictions and limitations negative people place on you, or stop trying with all your heart, it's OVER!! By no means am I saying, that ALL anyone needs is a good attitude and positive thinking to recover. There are many factors(age, area damaged both how much and what part/parts, what type of damage, inherent survivor personality, motivation, ability, prior physical condition, other medical issues, medications, on and on) involved aside from one's attitude. I'm basically saying that while some things are a given and not changeable like your age. Your attitude is one factor that you CAN control and it can help or hurt you.

If you or anyone you know is struggling with a negative attitude especially while faced with a health crisis....look for help asap. There is tons of research on the benefits of positive thinking and an optimistic attitude. There are also tons of ways to change your thought patterns.

The Problem With a Rare Disease Diagnosis

Monday, May 18, 2015

Elizabeth
Thankful for Every Day!

Six months after the birth of my first child, I was diagnosed with a cavernous angioma. I never expected to have my life changed in so many ways. While cavernous angiomas are actually very common (one in every 500-600 people have them). They are still considered "rare" because most people that have them never know it as only about 30% of those with angiomas become symptomatic. Common onset symptoms can vary but often include:  seizures, stroke symptoms, hemorrhages, and headaches. Typically, a diagnosis only comes after an individual becomes symptomatic and has an MRI. The most common age for a diagnosis is in a person's 20-30's even though most people are born with their angiomas. Some people only have one (sporadic) or others have many/multiples (genetic).  By definition, cavernous angiomas, are abnormal clusters of blood vessels often resembling a raspberry configuration. The problem is that the lining of the blood vessels in cavernous angiomas are grossly dilated/defective, they have thin, weak walls that can leak or bleed easily. When these cavernous angiomas are in the brain and spinal cord and they bleed... They often become problematic.

Well, that's exactly what happened to me. When mine starred to bleed after my first pregnancy, I became symptomatic (dizzy, spacey, feeling weird, eyes not working right, etc). At first, I thought it was due to sleep deprivation, hormones, and everything new moms go through. By 6 months postpartum, I went to the doctors. Of course, they were sure I had postpartum depression. I insisted otherwise. No, I was not depressed but something was wrong. Eventually, I got an MRI which showed a 2.2cm cavernous angioma in the insular cortex....incidental finding....ugh!

Laid-Back Admin: Please say Welcome to Elizabeth

Dr. Beagle C. Cranium
Stroke Survivors Tattler

Hi SSTattler et al,

      Please say Welcome Elizabeth to be a new Guest Blogger for Stroke Survivors Tattler.  She had “...large bleeding cavernous angioma from a deep part of her brain” and she will tell the details, both positive and negative, in her blog -  Thankful for Every Day!. As well take a look at Angioma Alliance - "Angioma Alliance is an organization by and for those affected by cavernous angiomas and their loved ones, health professionals, and researchers...”.

Below is her biography and a copy in About Us and the ▶ Guest Bloggers Index.

Welcome Elizabeth,

Dr. Beagle C. Cranium
Stroke Survivors Tattler

SSTattler Blogger - Elizabeth

Elizabeth
Thankful for Every Day!

• I originally started in my blog, Thankful for Every Day!, in November 2010 just prior to having a major brain surgery to remove a large bleeding cavernous angioma from a deep part of my brain. 
• You can best understand the gravity of our experience by reading the first several entries.
• Nov 2010-Dec 2010 - I wrote the first one and my sweet, adoring husband, John, wrote the next several (while I was too sick to do much of anything) that documented surgery, immediate recovery, and our reaction to the surgery complication that was revealed 2 days after surgery. 
• This recovery process has been difficult but we are making it. 
• We appreciate all the kind words of encouragement we have received and we would like to thank everyone that has participated in helping us along this difficult journey. 
• Please ask a real professional, or probably several. :) I hope to be able to help at least one person along the challenging road of brain surgery and recovery. 
• Also, if you have any questions about my personal experience, please leave them as a comment or contact me directly at thankfulforeveryday@yahoo.com and I will respond although I am not a doctor and this is not a replacement for medical care or advise. 
• Please see my site of course - Thankful for Every Day!