Sunday, April 5, 2009

My Own Reality Show

I've been getting ready the last few days for an event coming up in my life. On Tuesday I'm going to be a guest in the Epilepsy Unit, and my stay will be 5-7 days. I've already told my husband that the Easter Bunny is going to need to find me there!

I will have electrodes attached to my head during the entire stay in order to a continuous EEG. It's quite a process! I went in search of scarf yesterday, and Jerry and I managed to find a bright pink one with some rhinstones here and there. You see, I have been through this before, and my head is not a pretty sight with all those wires and glue. It's pretty important that I have something over my head. This time I'll be sure to bring my soft pillow, too, because sleeping isn't very easy either with wires attached on the head! ;)

If you haven't figured it out by now, I have epilepsy. Since February 3, 1977. As far as illnesses/conditions goes, this has been okay - really! I was blessed to have been put on a good medication and be seizure free for 21 years. I went through 6 years of some bumps and difficult times. What I need to say about those years - 1998 to 2004 - is that even though they were hard and yucky and filled with seizures, they made me stronger. They made me happier for what I have in the moment, and they made me realize that there is no time to take one moment for granted.

In 2004, I was implanted with a medical device called a Vagus Nerve Stimulater - VNS. It was a last ditch effort before brain surgery. I had had all the testing done for brain surgery - and WOW - what testing that was! One test put half my brain to sleep at a time and testing each side of my brain while I was awake. Weird huh? During another doctors had to insert long needles into my cheekbones to map something in my brain (Yes, I was awake. Yes, it hurt.) Anyway, there were so many, many tests!! But my doctor (who I always say was sent by God) asked if I wanted to try the VNS before brain surgery.

Let's see...brain surgery or metal in chest...I decided on the VNS, of course!

And it has worked so well for me! After the doc got it adjusted (and you can hardly hear it in my voice),I stopped having seizures. But last year they started again, and now it's time to do something again. And this time they are accompanied by nagging memory loss, difficulty remembering words, and bad headaches.

I thought when I went into the doctor last week that she would adjust my VNS or bump up my medicine. She surprised and saddened me when she told me that I had to go into the hospital. But I've had this long enough to know that there is no quick fix. So I get to be attached to wires so that I am electrically monitored and then I'll also be video monitored. Thus my own reality show - LOL!!

I'm taking a leave of absence from CTMH for a few months in order to get everything straightened out. I do plan on enlistening some help, however, and having some kind of small Open House in May. I want everyone to get their new Idea Book! It's such a good one!! You'll get a postcard and e-mail from me when I've set a date.

I hope this helps you understand a little a little! You know I just don't tell people that I have epilepsy because 1) it's been a part of who I am for so long that it's second nature to me!, 2) it's not a weakness or hindrance, and 3) it just plain doesn't come up!

There is a great new star-studded website - http://www.talkaboutit.org that gives a lot of information. I hope I've helped you understand my situation a little!

15 comments:

Linda said...

Very well written!
We have a lot going on in our household right now too, but if there is anything that I can do to help you - let me know.

Michelle said...

Wow--so brave of you to share about this. I hope all goes well. I'll be keeping you and your family in my thoughts and prayers. If you need any help, please let me know!

Jillene Moen said...

Brenda,
I am so sad for you that you have to go through all of this scarey medical stuff. I pray for strength for you and Jerry and Shane and wisdom for your fabulous Dr. to guide you through this with as little pain as possible. I will pray for you.
Thank you for the beautiful card & Memorial for my Dad's memory, how kind of you with all you have going on to remember my Dad's passing.
Hoping the Easter Bunny will still find you and that you can still eat chocolate through all this! What a brave woman you are Brenda.
Jillene

Barb said...

Brenda,
I am so sorry that this is happening to you again... I hope that these tests bring about a smart new (and pain free) way to put those mean old seizures to rest! Sending hugs, thoughts and prayers! Barb

Karen said...

You are a ray of sunshine, Brenda. You have a way of lighting up the room just as your smile lights up your face. I hope this storm cloud passes quickly and you are able to dive into the fun things life holds for you. You're in my prayers, love, Karen

Chris Szczechowski said...

Brenda
I will be praying for you and your family as you go through this difficult time. I have a sister with epilepsy that has multiple seizures a month, it is quite a blessing that you have been able to stop this aweful illness. I pray you will be able to have your medication adjusted or be able to have a procedure to help rid you of these horrible seizures. I will be thinking of you and please know you will be in my thoughts and prayers. I know you have an amazing family, keep them close to you and take this time for you and them!! Sending hugs your way~ Chris Szczechowski

Creatively Yours, Karen said...

Brenda,
You sound like a very strong woman and this will be another one of those trials that will strengthen and stretch you once again. I will say a prayer for you that the test will reveal exactly what you need, so you can get back to living again.
If the bunny doesn't find you we'll have to have a talk with your hubby. Tell him your CTMH sis' are watchting *wink*. Stay strong!
Hugs,
Karen

Anonymous said...

Brenda,
What strength you have. I am sorry you have to go through this. You will be in my thoughts and prayers. Hang in there.
K

Sharon said...

Brenda,

My thoughts and prayers are with you during this process. My son was diangnosed with a seizure disorder in 2nd grade and we've been down this road, but not to your extent. Fortunately for us his seizures are of the absence variety and not the tonic/clonic. He has had learning difficulties and has issues with memory etc. He recently had to up his meds too.

Know that God is watching over you and I'm sure He will see you through this.

Best of wishes from my family to you and yours.

Sharon Hansen

Jenny-May said...

Brenda,

Know that you are in my thoughts and prayers during this time.

Jenny-May

Theresa K said...

Brenda.... ditto to all the above. I have a 20 year old son who started having seizures when he was 11 1/2. Then his sister who was 1 1/2 years younger started to have them also. She is now 19. So I have two who have seizures and know how hard it is: the tests, the episodes that come on suddenly and the way the whole deal can upset the entire family.
My daughter is on a lot less meds and is stable right now for about a year. My son, though still has trouble, has had his meds increase so many times. He is currently on 3 meds for seizures alone, plus medication for depression and to help him concentrate. So that is a handful in the morning and another in the evening!
It is amazing how much strength I gain from reading or talking with someone else who has seizures. Please know that your sharing about your seizures is a blessing to those of us who need to know we are not alone.
I don't have seizures, but every time one of my children do, I feel such a range of emotions. Fear, sadness, pain, anger.... But knowing we are not alone softens these emotions and brings us courage! Please keep sharing because in your trials, we are blessed! Thank you so much. Hugs from us to you, Theresa

Anonymous said...

Hoping for the best for you!

Brenda said...

Thank you all for your thoughts, wishes, and prayers. You have no idea what it means to me - I am touched so deeply.

For those of you that have shared stories of how epilepsy has touched your life, I am honored that you would share with me! At some point I will be in touch with you personally...

Off to the hospital now. I'm looking forward to updating you with GOOD news in a week!

Karen said...

Miss Brenda, I am so sorry you are going through this. But, knowing the strong and positive person you are, I just know things will be OK. I truly believe our attitude and belief that we will be well affects our health so much. I will keep you in my prayers this week and I'll look forward to checking back on you next week to hear how you are doing! -Karen Pedersen

Anonymous said...

Brenda
I am sorry to hear that your health has got worse laterly - I am sending you prayers, wishes and hugs. It was so fun meeting you on the cruise and I am praying and hopeing for a speedy recovery for you. Sending love to you and your family - Kind regards Sara x :O)