Stop and Visit

Each year of our KAT-Walk and Karo-5K I have been at the tent representing the Maine Brain Aneurysm Awareness committee, only leaving it to help other volunteers if needed or if I am participating in the walk itself. Before, during, and after the event, we try to provide people with support, information, and education about brain aneurysms.

SURVIVORS:
If you’re a survivor, like I am, we encourage you to make yourself known at the event by stopping by our tent to say “hello” and to sign in. Each year we’re very encouraged to meet new survivors as well as those who survived an aneurysm many years ago and choose our event to celebrate the fact they survived. We are also very aware some survivors don’t want to draw attention to themselves or make a ‘big deal” out of it, but it IS a big deal. Brain aneurysms kill too many and if you survived a rupture or were lucky enough to have your aneurysm treated before it ruptures, then you’re very worthy of attention at our event.

Please stop by, say “hello”, and sign in. Not only is it a wonderful feeling to know you’re not alone, but seeing, and getting to know another survivor can give newly diagnosed or treated survivors a tremendous amount of encouragement and comfort.

NEWLY DIAGNOSED
As our Brain Aneurysm Support group continues to draw new members, we’re also very aware there may be patients who have been newly diagnosed with a brain aneurysm. Hearing those words can be extremely frightening, especially if one has no idea what an aneurysm is. It’s only AFTER you’ve been diagnosed and seen at the doctor’s office that the questions seem to present themselves.

At our Brain Aneurysm Awareness tent we can provide you with informational booklets and brochures to help you on your journey. The types of brain aneurysms, different treatments, and what to expect after treatments are all part of the learning process when you begin your brain aneurysm journey.

Also at the tent you’ll meet other survivors who can help answer some of your non-medical questions and hopefully ease some of your fears.

THE WALL OF HONOR
Two years ago we started the Wall of Honor where families can place the name of a loved one who has been lost to an aneurysm or the name of a survivor.

If we are aware a survivor is registered for the walk or run, we try to have their name pre-printed and placed on the wall prior to the event, but each year we meet new survivors and we welcome you to visit the tent, write your name on one of the colorful sneaker stickers, and place your name on the board. You survived…you deserve a place of honor.

Wall of Honor

If you’ve been unfortunate to have lost a loved one or friend to a ruptured brain aneurysm, we also welcome and encourage you to remember them with a place on our wall. As with the survivors, if we know family members of one who was lost are registered for the walk or run, we try to honor their memory with a pre-printed sneaker sticker on the board, but if you’re new to the walk and want to honor your lost loved one, please stop by the tent, write their name on a sneaker sticker and proudly place it on the wall to honor their memory.

We try to keep it to one sneaker per survivor or loved one. If the name you’re looking for is already ON the board, we have seen other family members and friends taking pictures with the sneaker with their name on it. The Wall of Honor has become an emotional place for some and a proud place for others. A true brain aneurysm community develops on the day of the event and it gives one hope, comfort, and encouragement.

 

SUPPORT COMMUNITY
Next to our Brain Aneurysm Awareness tent we will have a tent set up for the Maine Brain Aneurysm Support Group.  For those who are unable to participate in the events, we welcome you to rest here and enjoy the festivities with other survivors and family members.

 

Clipping a Brain Aneurysm

Dave and I both admitted to each other on the drive to Portland that we were both scared last night. We were scared something would go wrong during surgery and I would not be the same afterwards. As a result I would regret making the decision. Well…as it turns out it was one of the best decisions I’ve ever made.

We also both admitted our fears were completely resolved when Dr. Ecker walked into to the pre-op prep room and explained the procedure again. He just oozes confidence. Hower, he mentioned the size and location of the incision and THAT was news. He told us in September the size of the location he opened the skull, but not the size of the skin incision. THAT was much larger and something Dave and I should have though about but never did.

They quickly put me under when I got into operating room, so I didn’t get much of a chance to see either doctor or explore this operating theatre. Previously I had only been in radiology.

The actual procedure only took about and hour and a half instead of the 4-5 hours we were warned about.

I woke up to Dave standing over me and I was already correcting him and Dr. Ecker told me it was a huge success and they he able to place the clip in a perfect spot. He also informed me that the top of the aneurysm was very thin walled…we may have dodged a bullet with this one.

I was taken to the lovely 6o8 neuro ward. The staff is great…the atmosphere is not. I got no sleep and then became very nauseous over night as well. Twas a long night.

My head was hurting pretty bad and my jaw was quite painful. I learned the next morning they had to cut my jaw muscle. Goody!

I also got the first look at my incision. Wow! It’s big and ugly with 53 stitches in the outer skin.

Clipping Day has Arrived!

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So, here I am at 5 a.m. ready to head down to the hospital for my brain aneurysm clipping today. I have my Care Bear (part of my “Get-Better-Bear” collection) who is wearing the angel necklace made and given to me by Kim.

I know there are two (Kim & Dori), now three (Rhonda), very special angels watching over me today. Wish me luck! And hopefully I’ll be posting more blog entries soon.

Soul Searching

As I have been psyching myself up the last three months for my surgery on the 16th, a sudden and tragic event almost put a stop to the whole process. On January 2nd, I lost my older sister Rhonda to cardiac arrest. I am now an only child and my niece has lost both of her parents in her young lifetime. Only 19 months ago, I lost my other sister Dori. Just too soon…..

My familyThankfully we all spent a joyful, family Christmas together in New York. I’m so glad I went home, but it doesn’t make it any easier.

After some soul searching, and with the prodding and support from my mother and niece, I am going to go ahead with the surgery. I suppose one can grieve just as easily during recovery. I already have the time slated off from work. I was most worried about putting my family through more stress, but they have assured me that wanted me to take care of ME and move on. Let’s hope that’s the case for all of us.

So, it will be with a heavy heart that I go into my surgery next week. Hoping that this procedure will prevent putting my family through more pain further down the road and Dave and I can continue to LIVE life and enjoy it. As we’re both so well aware…life can be very short. It can be very unfair and it can be a wonderful, beautiful thing as well.

Keep those prayers coming. We’re all going to need them.