Wednesday, April 10, 2013
NOTE: I hope what I say in this post makes any sense - it has been a long day. Missed therapy so I had to take an extra long walk that has worn me out, yet I cannot sleep. But I thank The Lord nonetheless!!!
I have gotten many e-mails from folks going through hard times. Preparing for brain surgery, preparing their child for brain surgery, medications are not working, having too many seizures, having trouble sleeping, issues with health insurance, losing their jobs, relationships falling apart due to having a partner that dislikes their condition, and so on. I will continue to pray for The Lord to help you all through these times. I know they are hard.
We may not have gone through the exact same things but we have both definitely experienced those periods of the rough waves hitting our ship in Galilee. I think that many times those waves never truly get stopped by Jesus, as He often wants us to trust Him and lay down by his side until the storm calms. Anyhow, if we asked Jesus to calm the storm (and if He did calm it) could truly block something He may want us to see, strengthen by, or a gift of the ability to help others that are struggling with what we are as well.
Saturday, March 9, 2013
As promised, here are EpilepsyBlogger's (Mandy's) pictures from the two week hospital stay. These are the photos after her brain surgery... Very emotional. Mandy ended up getting her left hippocampus removed entirely, part of her left occipital, and part of her left temporal lobe removed. Due to this, her ability to read is going to need a lot of therapy, yet she can still write with no problem whatsoever. Mandy also has tons of issues remembering names of people, restaurants, animals, foods, etc. Mandy also has issues with her vision due to the brain surgery... So therapy is going to be difficult as Mandy is healing for the next few years.
But guess what? Mandy, who regularly had at least 30 seizures each day has had NONE whatsoever since brain surgery!!! So although there will be a few years of her brain healing, she will be nothing but thankful to no longer have seizures!!! Be sure to donate what you can to help Mandy out now that she is out of surgery. The family & friends of Mandy are uniting to raise money to help her battle against epilepsy. Thank you for your support and CLICK HERE TO READ MORE about how you can help!
|Mandy's father Andrew, waiting for her to wake up after brain surgery so he could find out if she was okay. Very stressful and emotional.|
|Mandy's mother holding her hand for hours while she slept. Yvonne was also very stressful that she wasn't waking up yet.|
|After brain surgery Mandy slept literally 24 hours on end... Didn't wake up as fast as everyone had hoped. Family waited in the hospital with her regardless of her sleeping. They wanted to be there just in case she decided to wake up the first day.|
|Mandy and her mother the day after brain surgery... So happy!|
|Mandy finally woke up a day after brain surgery and hugged her daddy!|
|Mandy showing her bruises from her daily shots on her tummy. Those shots unfortunately made her gain weight!|
|Mandy getting bandages and staples removed two days after surgery.|
|Left: Mandy's nurse Janice |
Middle: Mandy, awake on the day after her final brain surgery
Right: Dr. Papa (Mandy's brain surgeon)
|Mandy's gorgeous head!|
Wednesday, February 27, 2013
Today was the bedside mapping test... Totally insane!!! I did get electrocuted a bit in the face, and that hurt really bad. But I didn't mind because it was an awesome experience that I am truly blessed just to have been able to experience. I actually had an out-of-body experience and although I was laying down, I found myself actually looking down at my own body!!! The doctors doing the mapping found that to be so interesting and got rather excited about that result. This has happened before near the onset of some seizures, but it was weird because I felt so much more awake and I could see myself much more clearly. What an amazing experience! My doctors completed this mapping using different machines with signals. Here is a page that explains mapping a little more in depth: http://www.epilepsy.com/epilepsy/surgery_brainmap Note that my mapping was done in my hospital room and not on the operation table. I'm not sure why this out-of-body experience is intriguing me so much, but I can't get it out of my mind. Such a crazy thing to feel!!! Something I will definitely always remember and I am very excited to have been able to go through these tests and learn just how powerful the human brain really truly is. The mapping itself truly makes me want to do work like these doctors in the future. Whether it be the same old art therapy for Epilepsy patients that I originally wanted to pursue, or maybe even get into the actual medical field! Anyhow, this hospital stay has been insane. I am so happy to have made it through this far. I've had a handful of "Oh crap - is this normal?" moments both during the in-depth EEG and the mapping exercises. I felt like the doctors couldn't give the straightest answers or explanations to me until an hour or two after the mapping was finished. Altogether, the testing lasted about 4.5 hours - didn't feel like it, but that's what the clock showed! I also found out that my doctors are familiar with many of the blogging doctors, including the beloved Lance Fogan, Clinical Professor of Neurology at the David Geffen School of Medicine, UCLA. One of my doctors actually remembers going out for Chinese food with him when she was back at UCLA. Lance Fogan is an awesome guy with plenty of amazing knowledge to share, so be sure to check out his website if you haven't already! http://lancefogan.com/ My brain surgery is tomorrow at 7:00am, so please keep me in your prayers because I truly need it. My surgeon explained that I have a 50% chance of losing 100% seizures... THIS IS GOOOD... GREAT NEWS!!! However, I am estimated to lose ability to read slightly and I am estimated to be unable to remember lists. But I am not going to claim these changes because the good Lord is going to carry me through this journey, just as He did this entire last week. And for now I need to eat some dinner and get some rest as my thinking is a little slow and worn from the mapping.
Wednesday, February 20, 2013
So the hospital called two more times. Now I am going in at 5:30 in the morning for surgery. I decided to stay awake, write one more short post, finish packing and thank you cards. Getting so exhausted that it's not even funny, but I'd rather go into surgery tired because I won't have time to be so nervous.
Cramps are coming in more and more by the minute, so I know my period is going to start pretty much any minute now. Not happy that I'll be getting my monthly gift in the hospital during brain surgery. I am actually rather upset... But maybe that's just my hormones making me cranky?
Just got off the phone with my sweetheart. It was so hard to hang up... You know, I love him with all of my heart. And over the last few weeks I have realized that his love for me has truly grown. The way he loves and protects me is just... Unbelievable. Especially for our age and distance apart. I wish he was back at home right now, but I am thankful simply to be with him. The Lord has spoiled me with such a sweetheart.
I started to cry on the phone with him from the fear that has finally kicked in 5 hours before my first surgery. I realized this is happening TODAY. No more days to count down to. I told Rafael "Thank you for staying by my side through this. Your love has kept me so strong when I just wanted to fall apart sometimes. You're my best friend and I couldn't have done this without you". He replied saying, "Anything for you my love." Then we said our classic form of I love you that we say to each other each day and night:
"I love you," I cried.
"I love you more," Rafael whispered.
I sobbed and replied "Never."
"Always and forever." he said, bringing a smile to my face.
The boy always knows how to calm my tears. I wonder sometimes if he's an angel in disguise. Anyhow, I had to hang up because I refuse to keep him from his sleep. He has an education to achieve and I will always make sure he gets all the rest he needs to do so. So I held back my tears and said goodnight.
I am having faith that our good Lord is going to bring me through this surgery. I won't lie to anyone - I am scared out of my mind! This is no foot surgery or appendix removal. It's a brain, and it's a big deal. I contemplated chickening out, but I did a lot of thinking and a lot of praying. After that long process I realized that Epilepsy will always be a battle, but the cure we find someday is going to rely on us to be brave and make choices that don't seem so attractive.
So my sweet Epilepsy family, I am doing this for all of you. For those of you fighting Epilepsy now, and those of you who will fight Epilepsy later in the future. I am getting this surgery to help show you all that you can do it too, and that you can find success. I am claiming my healing from the Lord, and rebuking any suffering.
Death has been eating away at my brain for quite a while now with Epilepsy and making me suffer tremendously, but with our army of prayer warriors and the good Lord's blessing of an amazing brain surgeon and Epileptologist, death's meal is about to be put to an END. I love you all, and just know you are all appreciated and loved by this blogger and advocate. I may not know you personally, but I have a love in my heart and a great understanding of your suffering and I want to help you achieve your Epilepsy Success.
So please stay tuned to the blog and/or Facebook pages. My family will be updating daily and I will as well if I have the energy or feel well enough. Also, keep me in your prayers because I truly need my prayer warriors right now. Thank you for the love and support, and I am going to show you all that overcoming Epilepsy is possible with faith, love, hope and a little bravery.
"He replied, "Because you have so little faith. I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you.""
See you all soon,
P.S. - I have gotten comments and messages on Facebook regarding sending monetary donations and/or gifts to me. I was unable to reply to several due to privacy settings on Facebook. Therefore, if you would like to send a donation or gift, please e-mail MandyKrzywonski@EpilepsyBlogger.org for the mailing address.