Category: Brain Aneurysm

8 Years And Counting

Published on by heiditea2 Comments

20141004-230625.jpgI say it every year around this time but Happy Annie-versary to me! 8 years ago today I suffered a ruptured brain aneurysm at home. I believe I was guided by God’s hand to go into the ER when I did. I KNEW it was something I had never experienced before and wanted to get it checked out because it scared me. I was only vaguely aware of the term aneurysm because a cousin had one coiled a few years earlier. I had no idea just how serious it was for her and just how my life, and my family’s life, would be changed.

No, I wasn’t sent to Boston for my surgery. My particular aneurysm was a good candidate for the relatively new procedure called coiling. What I know NOW, but didn’t know then, is that the rather large, 1/2″ diameter brain aneurysm is actually sitting on my optic nerve and the head of neurology was nervous about doing the more invasive procedure of a craniotomy and clipping (which I just went through with my un-ruptured aneurysm). Thankfully the staff right here in Maine at Maine Medical Center were more than capable of handling that procedure and are now in 2014 even MORE prepared to handle all of the new treatments available.

16 coils and four additional coils, a stent, a craniotomy, and now a metal clip, and here I still am. It was a frustrating recovery in 2006 and I am now meeting, and hopefully assisting, recent survivors at our brain aneurysm support group. We’re all lucky. We survived.

I’ve given up asking “why did I survive” and why didn’t Dave’s niece Kim or my sister Dori survive their ruptures. There is no answer. God had other plans I guess.

I mentioned to my mother earlier in the week that I had finished the first round of layouts for the ENTIRE catalog for next year’s book. Ironically, 8 years ago, I remembered celebrating that milestone and one or two days later, the brain aneurysm ruptured. I’m still working just as hard, still stressing just as much, but a little bit more tired this year because my UN-ruptured brain aneurysm was clipped in January. One of the side effects from THAT surgery is when I’m overly tired, my left eye lid gets droopy and even though it doesn’t look it, I feel like my brain and skull are swollen when I’ve worked too hard. Yes, I still push myself. It’s my job, it’s my responsibility. I do have limits though….you’d think I would have learned that 8 years ago. LOL

I still don’t eat as well as I should and I don’t get enough exercise. Perhaps that part of my brain that activates motivation has changed. Who knows, but I’m here. No special celebration today, just making home made chili in the crockpot, working on the catalog (yes, on the weekend!) and hanging out with my Maine Man and my kitty cats. That’s more than I was doing eight years ago in ICU.

If I’m able to help any other survivors and help spread the word about the symptoms and treatments of these silent killers, then I’m hopefully turning something bad into a more positive thing. There are days I don’t want to talk about brain aneurysms. There are days I don’t want to think about them, but I can’t get away from them. That’s the sad truth. So, I’m trying to make the best of it and try to help others LIVE in whatever way they’re able to. They are a part of my everyday living.

For those of you still struggling, you’re not alone and things will get better with time. Just treat yourself right, enjoy life, and celebrate the people around you. You just never know.

20141004-225151.jpg

Photo taken on my first walk outside after craniotomy in January this year.

2014 KAT-Walk & Karo-5K

Published on by heiditea3 Comments

It was chilly for September, even for Maine, and the winds weren’t exactly relaxing but the annual KAT-Walk & Karo-5K held last Saturday was a terrific success! At one point I said the words “My heart is full” to myself after looking out at the many, many people filtering in throughout the brisk morning.

Team Nolan over 160 strong!Over 600 people attended the walk and run this year. We’ve never had that many. Granted there was a busload of school kids and we certainly can’t expect, or rely, on those exact people to attend the following years, but it was great to have that kind of show of support.

To me it never really is about the money raised, but the physical show of support seen on the day of the event. You can’t get that warm fuzzy feeling from a check. You can’t share a hug with a credit card charge. And you can’t feel the sense of accomplishment after finishing the run or walk from a $10 dollar bill.

That being said, we DID raise over $30,000 this year! We are also very proud that the “Maine’s KAT-Walk & Karo-5K Chair of Research” was one of eleven research grants totaling $230,000 awarded at The 8th Annual Brain Aneurysm Foundation Research Grant Awards Symposium. The event was held on Thursday, September 11, 2014, in Miami, Florida.

Our 2014 Chair of Research was awarded to Koji Hosaka, PhD, Dept. Neurosurgery, University of Florida. He is working on identifying proteins that can be coated to the miniature coils used in the repair of Brain Aneurysms. It is anticipated that these compounds will be effective to promote healing and shorten recovery times and complications.

Now, back to those warm, fuzzy feelings. Every year, I’m always struck by the people who show up to support someone who has lost someone or to support another survivor. In fact, at our monthly support group, instead of saying “caregiver”, we voluntarily started calling them “supporters”, which I like much better. There are also many people who attend from out of state.

Two such supporters and fellow brain aneurysm survivors, I had met previously and was honored they came to our event. One was from Florida, via Pennsylvania and the other from New Hampshire.

It was nice to actually walk with someone this time! Lori is a walking miracle surviving multiple brain surgeries & a stroke. With the help of her service dog Tober and her husband Ralph, we were a great walking team and they kept me on stride for probably my best time ever. Yes, I was sore and tired afterwards, but I needed to keep up.

Julie has come to our walk in the past and was a huge help at the brain aneurysm awareness tent getting names and greeting other survivors. Julie has had several struggles with other medical issues including breast cancer and she remains an upbeat proponent of being your own advocate for better medical care. We had the same doctor coil our ruptured brain aneurysm in 2006 about 3 or 4 months apart in Portland, ME.

The three amigos had a grand time afterwards giggling like little girls and celebrated the day with a drink. I enjoyed their company tremendously and was thrilled they joined us and me. Again…it’s that show of support that can mean so much to so many.

The endless hours of hard work put in by so many volunteers is all worth it when we see the outpouring of support to raise awareness for brain aneurysms.. My husband, Dave, had a “To-Do” check list that had over 800 items to be completed. I know his niece Kim would be so proud of the work he is doing and would be embarrassed that an event was named after her. I also KNOW she’d flash that fabulous smile seeing the efforts put forth, and know she’s right there beside us the entire way trying to raise awareness about the silent killer that took her from us.

I believe this event would not be as organized, or look as good (flags, tents, signs, etc) without Dave putting in endless hours of contacting survivors, supporters, and sponsors. I hope people who attend realize the personal contact Dave, and other volunteers, have made to make those who attend the event feel welcomed and comforted. I seriously doubt other walks/runs have that kind of personal communication from an organizer. Not only is Dave MY biggest supporter, but he’s trying to support everyone else touched by brain aneurysms. He knows…he’s been effected in multiple ways by them and I love him for his passion and endless drive to make sure the events go off without a hitch (even checking the tides!) and it looks amazing. We actually don’t see much of each other during the event. He and I have to catch up on the day on the long drive home afterwards with the trailer loaded up with the “circus”.

I also realize the event was overwhelming for me this year. I was extremely tired after the walk. I AM just 8 months out from open brain surgery, and there was a LOT of mental and visual stimulation all day. Speaking to many people, walking, taking pictures, unpacking boxes, re-packing boxes, not much food, and being overly tired from work. It’s a shame no one FROM work was there to see the event we have worked so hard to produce and give me some support. But, I’m blessed to be included with the over 20 survivors who attended the event with THEIR supporters. I had my sister Dori and Kim on my mind and walking for them and myself was a privilege. Good for me! 🙂 It was nice to cross the finish line with someone who knew I had actually crossed the finish line and we gave each other a high five and a hug.

Trailer and car Unloaded at seaside
The trailer & car all packed up and ready to go! Trailer unloaded at Back Cove
Tents set up Dave addressing the crowd
It all turns into this! Dave addressing the crowd at start of race.
The View from Starting Line 20141004-225415.jpg
Great shot of crowd gathered at start/finish line Lori and I just crossed the finish line
20140920-232025.jpg Wall of Honor
Julie, Lori, Tober, and myself The Wall of Honor
My sister's sneaker My sneaker on the honor board
My sister’s sneaker on the wall of honor My own sneaker on the honor board

 

Stop and Visit

Published on by heiditea1 Comment

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.

 

Mixed Blessings

Published on by heiditea1 Comment

So far this year registration for the KAT-Walk and Karo 5-K run is up considerably from last year. Sadly, part of that uptick is due to a beautiful young man being taken from us by a ruptured brain aneurysm. The outpouring of support for his family from the community and his friends is tragic and wonderful all at the same time. We should all be so lucky to have that kind of comfort at such a terrible time.

We get excited when we see new faces joining us, but it may be because they recently suffered or survived so it then seems wrong to show excitement in any fashion. Reaching out to other survivors and people who have lost a loved one is very important to let them know they’re not alone and to offer support through a day that can be filled with a wide range of emotions. Thankfully the walk/run has also attracted repeat visitors and they make it an annual event to honor themselves, their loved one, or a friend who has been touched by brain aneurysms. We’re so lucky to have their show of support as well.

Monetary donations are vital in helping raise brain aneurysm awareness. I am personally thankful for the 15 people who have donated money on my fundraising page for this year’s event.

However, each year when the walk comes around, I’m always disappointed in the lack of support shown for me AT the event. In fact during my 6 months recovery in the hospital and at home after my ruptured brain aneurysm in 2006, only one co-worker visited me. And during my recovery from my clipping this past January, no one visited. One close friend visited, but only after he got over his cold! 🙂 I couldn’t afford to get sick at that point and sneezing wouldn’t have been fun. So, is it any wonder I get a little down at this time each year?

There is only so much I can do. I’m not allowed to send out one mass email to all of my co-workers anymore and I put posters up in all three locations and lay brochures out. Oh, well. I just need to get over it already. Or perhaps I’m just not that likable and I have annoyed them with my brain aneurysms enough. LOL

That being said, I HAVE made friends that do attend the walk. They’ve been made mostly through the event and they always come anyway, not to support me in general. There are two other survivors who I have been in contact with for many years and I know I can always count on them in some fashion. One is from NH and the other is from FL and will again make the journey to Maine for our event. I can’t even get people IN the state to drive down to Portland for me. Entire groups of people drive or fly hundreds of miles to support their other family members and friends and that’s truly, truly wonderful for them.

My family has gotten smaller over the last couple of years, although my two sisters, Dori and Rhonda from NY never attended the event either, I now walk to honor both their memories as well as for myself because I’m a two-time survivor. Yeah, me! 🙂

Sorry…needed to vent. So lets count this as my whiny, selfish blog entry, okay? It’s my blog… I can vent if I want to, right?