Category: Recovery

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?

I Remember

Published on by heiditea2 Comments

As my six month anniversary of my brain aneurysm clipping arrives, I ran across the notes I took at my first followup appointment with the surgeon. I scribbled that the “bone has to heal”. I keep forgetting the bone will heal around the screws and plates holding the bone flap secure. The last several weeks, I have “felt” my brain/head/nerves when I lay at a flatter level in bed. It’s not painful, it’s just not a pleasant sensation. So I have added another pillow and that helps.

On Neurosurgery.com from Australia, there was this question: Does the bone heal back into the skull?  In most cases yes, but in some people it can re-absorb to a degree then you will have a depression in your skull.

I must be one of the “some people” statistic. I notice the depression and can feel it and Dave has noticed it, but unless I point it out to people I don’t think they know it’s there. So I should stop pointing it out, right? LOL Hey, I had a hole cut into my head and 53 stitches. It MAY just leave a scar, right?

I know things are continuing to heal. The scalp is still numb, but it appears to be getting some feeling back now. My short strands of hair that were shaved at the incision are now growing a tick longer and annoying the hell out of me! We’ll see if I can hold out one more month then get it all cut short for the rest of the summer.

I THINK I’m starting to get some energy back. Granted, I haven’t really DONE much of anything. I’m getting chubby, but I’m rested. That’s good isn’t it? I’m up for a full physical next week and have to get some lab work done this week. We’ll see how my numbers look.

Overall I’m doing well. I’m listening to my body and when I need to sleep, I sleep. At least I try to. The main reason I had this procedure done was so I can continue living and that’s what I’m trying to do…one month at a time. I must remember I am still recovering and must remember my head/skull/brain is still healing. My brain bling is firmly in place.

Chatty Cathy

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We had another brain aneurysm support group meeting in Portland. The turnout was not as good as in previous months and we’re sure it’s because of the beautiful weather we were having. There were only two of us for quite some time, then we learned the speaker had to cancel due to a death in the family. Now what?

Finally a few more people showed up and a decision to simply have an open forum of discussion was agreed upon. There were 21 at last month’s meeting and this month was about half that at 11. There were four survivors and 3 care givers, two mental health care givers, Dave’s sister Nancy, our own medical person from the hospital and a reporter. I knew there was a possibility the reporter would be there to write a story, so we were very pleased when a few more people showed up.

As it turns out, it was probably one of the best group sessions the reporter could have attended because there WASN’T a speaker. We spoke freely, asked questions of one another and shared frustrations, fears, and our collective “brain bling” because the four survivors in the group were craniotomy & clipping recipients. It was a wonderful hour and 15 minutes of sharing and in some cases educational for a few.

I seemed to think I was overly talkative when I thought about it afterwards. I think because the reporter WAS there, I wanted to make sure some of the efforts of our group and our events were brought to attention as well as some of my own personal experience. And perhaps I did a bit too much. Probably the reason the reporter never spoke to me personally about my experience…I blabbed about it the whole meeting. LOL I was the only one she didn’t seem to speak with afterwards. I guess I gave her enough info…and then some, or my story just wasn’t that intriguing.

It was nice to speak up and out. I don’t get the opportunity very much, other than in this blog, and I never know who is, and isn’t reading my blog because they rarely make themselves known to me. I enjoyed knowing I could speak freely and have people understand some of what I was talking about. I hope I didn’t do too much or interrupt. Listening is the most important thing you can do at a support group meeting. It’s why we’re there…to lend support and allow people to speak. I just spoke…and spoke…and spoke. So I apologize if I ran over anyone. Chatty Cathy can be powerful!